The paperwork never ends The Archives
April 16-31, 1999 Archive Index CHFpatients.com

Jill M 4-16     what about Aldactone side effects?
 
Jon's 4-16 reply to Jill M's 4-16     at low dose, I have none
 
El 4-16     arrhythmia scare, questions
 
Jack's 4-16 reply to Robert F's 4-14     drug names
 
Jack's 4-16 reply to Chuck's 4-15     what is normal, anyway?
 
Ann Chambers' 4-16 reply to Angie H's 4-14     intro, docs, meds, questions
 
Tom S' 4-16 reply to Bill D's 4-14     drawing comparisons
 
John Len 4-16     HMOs, Medicare, fair practices & more
 
Sara 4-16     update, self-adjusting meds, questions
 
Bill D's 4-16 reply to Chuck's 4-15     welcome, info, some questions
 
Bill D's 4-16 reply to Ruth's 4-15     welcome, see a doc, get info & more
 
Bill D's 4-16 reply to Maggie S' 4-15     welcome aboard
 
Paul M's 4-16 reply to Chuck's 4-15     recovering from cardiomyopathy
 
Paul M's 4-16 reply to Ruth's 4-15     water retention, doctors & more
 
Russell B 4-16     just found this site - thank you
 
Candy's 4-16 reply to Ruth's 4-15     water retention, doctors & more
 
Joy R's 4-16 reply to Heather S' 4-15     humor, coping suggestions, questions & more
 
Jim H 4-16     correction to last post
 
Ben B's 4-16 reply to John B's 4-14     endothelin/TNF question
 
Jon's 4-16     Sara, Jack, Ben B, John Len & more
 
Angie H's 4-17 reply to Ruth's 4-15     having trouble with your e-mail address
 
Rosamond S' 4-17 reply to Ruth's 4-15     having trouble with your e-mail address
 
Sara's 4-17 reply to Jon's 4-16     Norpace & brand name drugs
 
Paul M's 4-17 reply to Sara's 4-16     echocardiograms, doctors & more
 
Staci H's 4-17 reply to Jill M's 4-16     Aldactone in low doses & side effects
 
Tom S 4-17     mothers in law and anecdotal evidence
 
Ginger's 4-17 reply to Sara's 4-16     narcotics, CHF & chat
 
Al M's 4-17 reply to Jon's 4-16     writing your legislators
 
Jon 4-17     lost a day's posts
 
Debbie F 4-17     intro, coping with CHF & more
 
Doris 4-17     intro, will I recover? & more
 
Angie H's 4-17 reply to Ruth's 4-15     hypothyroidism & CHF
 
Ben B 4-17     anti-rejection drugs question
 
Bill D's 4-17 reply to Ann Chambers' 4-16     welcome, CHF info
 
Bill D's 4-17 reply to Sara's 4-16     echos, back trouble, weight & diuretics
 
Bill D's 4-17 reply to Russell B's 4-16     welcome, CHF info
 
Christine 4-18     update, questions - Coreg, soy lecithin & more
 
Jon's 4-18 reply to Christine's 4-18     soy lecithin
 
Brenda George 4-18     intro, seek pen-pal & more
 
Gaile C 4-18     to Ruth, lousy doctor? & more
 
Jim H 4-18     metoprolol questions
 
Jack's 4-18 reply to Doris' 4-17     the Mayo Clinic diet
 
Phyllis' 4-20 reply to Ben B's 4-17     anti-rejection drugs cost
 
Angie H 4-20     meds, getting to sleep questions & more
 
Jon's 4-20 reply to Angie H's 4-20     meds & getting to sleep
 
John Len's 4-20 reply to Christine's 4-18     soy lecithin & more
 
Lori Pearson 4-20     update - married now!
 
Paul M's 4-20 reply to Christine's 4-18     diabetes experience
 
Jack's 4-20 reply to Christine's 4-18     lecithin
 
Bill D's 4-20 reply to Doris' 4-17     welcome, The Manual, weight & more
 
Bill D's 4-20 reply to Debbie's 4-17     welcome, finding info & more
 
John 4-20     my experience with new diet for diabetes
 
Anne M 4-20     seek amiodarone experiences
 
Christine's 4-20 reply to Jon's 4-18     seeking lecithin info
 
Jon's 4-20 reply to Christine's 4-20     finding lecithin info
 
Al M's 4-20 reply to Ben B's 4-16     beta-blockers & TNF in CHF
 
Julia H 4-20     postpartum cardiomyopathy questions
 
Lee R's 4-20 reply to El's 4-16     lightheadedness, rhythm problems, Urls & more
 
Lee R 4-20     Ron update & need help from those with ICDs
 
Will W 4-20     transplant donors always needed
 
Renee P 4-20     antidepressant meds questions 
 
Robin W 4-20     SSD/Medicare questions & update
 
Jana B 4-20     weird stomach feeling & Coreg - questions
 
Jon's 4-20 reply to Jana B's 4-20     weird stomach feeling & Coreg
 
Sara's 4-21 reply to Anne's 4-20     meds
 
Sara's 4-21 reply to Julia H's 4-20     stress echo tests & more
 
Bob 4-21     interested in experiences
 
Bill D 4-21     hey Regina!
 
Bobby Farish's 4-21 reply to Renee P's 4-20     antidepressant meds
 
Lee R's 4-21 reply to Will W's 4-20     thanks for the reminder
 
Lee R's 4-21 reply to Renee P's 4-20     antidepressant meds
 
Lee R's 4-21 reply to Jana B's 4-20     Coreg, quality of life & more
 
Jana B 4-21     stopped all my meds, faith, transplant & more
 
Jon's 4-21 reply to Jana B's 4-21     personal examination & more
 
Ginger 4-21     antidepressants, meds, Bobby & more
 
Pat L's 4-21 reply to Jana B's 4-20     stomach weirdness & Coreg
 
El R 4-21     new docs, update, ICDs, EPS & more
 
Jon's 4-21 reply to El R's 4-21     ICDs & CHF
 
Louise N's 4-21 reply to Renee P's 4-20     antidepressants
 
Louise N's 4-21 reply to Jana B's 4-20     stomach weirdness & Coreg
 
Louise N's 4-21 reply to Bob's 4-20     welcome, CHF info & more
 
Brenda H 4-21     glad to be back & more
 
Lori P 4-21     also have new e-mail address
 
Jamie S' 4-21 reply to Renee P's 4-20     antidepressant meds & more
 
John Len's 4-21 reply to John ?'s 4-20     high protein diet
 
Jennifer 4-21     intro, how'd you find me? heart questions
 
Marion G's 4-21 reply to Bobby F's 4-21     meds & sex drive, echo question
 
Roger C's 4-21 reply to Jana B's 4-21     experience with stopping meds
 
Robin W's 4-21 reply to Jana B's 4-21     stopping meds, quality of life
 
Robin W's 4-21 reply to Sara's 4-16     narcotics for pain & CHF
 
Robin W 4-21     update, SSD, e-mail & more
 
Milo K 4-22     sadness vs depression, meds question
 
Paul M's 4-22 reply to John ?'s 4-20     diabetic diets
 
Jana B's 4-22 reply to Jon's 4-21     healing & more
 
Jon's 4-22 reply to Jana B's 4-22     God
 
Renee M 4-22     Coreg & blood sugars, diabetes onset & more
 
El R 4-22     ICD & anesthesia questions
 
Barbara R 4-22     low sodium book
 
Cindy's 4-22 reply to Ginger's 4-21     antidepressants, heart sounds
 
Louise N's 4-22 reply to Jennifer ?'s 4-21     welcome, CHF info & more
 
Will W's 4-22 reply to Jana B's 4-21     taking or stopping meds
 
Julie Kendall 4-22     God's healing & more
 
Virginia R's 4-22 reply to Bobby F's 4-21     Paxil side effects & solutions
 
Connie D 4-22     just diagnosed, intro & question
 
Sarah F's 4-22 reply to John ?'s 4-20     diets, blood sugars, ketones & more
 
Renee M 4-22     antidepressant meds, book recommendation
 
Milo K 4-22     prostate massage - it wasn't funny & more
 
Milo K's 4-22 reply to Dina Rice's 3-25     update, meds, claudication & more
 
Hope M's 4-22 reply to Renee M's 4-22     Coreg & diabetes
 
Hope M 4-23     test results, discouraged
 
Jon's 4-23 reply to Cindy's 4-22     heart sounds
 
Marvin B 4-23     loss of taste - ACE inhibitor?
 
Jana B's 4-23 reply to Jon's 4-22     choice of words & more
 
Jon's 4-23 reply to Jana B's 4-23     editing & word choices
 
John B's 4-24 reply to John Len's 4-21     protein rich diet
 
El R 4-24     how do I deal with my neighbor's ideas?
 
Christy M's 4-24 reply to El R's 4-22     ICD implant experience
 
Leland Y 4-24     intro
 
Jan P 4-24     EF, ACE inhibitors & Coreg questions
 
John Len's 4-24 reply to Connie D's 4-22     only one extremity swelling
 
Chase's 4-24 reply to El R's 4-22     doctor questions, also transplant news
 
Jon 4-24     valid e-mail address is now required
 
Virginia R's 4-24 reply to Milo K's 4-22     right heart cath questions & more
 
Jon's 4-24 reply to Virginia R's 4-24     right heart cath
 
Kim S 4-24     SSD denial came, have questions
 
Jon's 4-24 reply to Kim S' 4-24     SSD, denials, what they mean
 
Ben B's 4-24 reply to Hope M's 4-22     importance of EF measurements
 
Hope M's 4-24 reply to Bobby F's 4-22     med to offset Paxil side effect
 
Sara ? 4-24     changed e-mail address & more
 
Marion G 4-24     CoQ10 questions
 
Robin W's 4-24 reply to El R's 4-22     anesthesia & more
 
Roger C's 4-24 reply to Connie D's 4-22     one extremity swelling
 
Roger C's 4-24 reply to Hope M's 4-23     we are in the same boat
 
Sara ?'s 4-24 reply to Milo K's 4-22     Cordarone
 
Sara ?'s 4-24 reply to Cindy's 4-22     Cordarone & more
 
Mina K 4-24     update, evaluation, aerobics & more
 
Claudia 4-24     intro, have several questions
 
Bob 4-25     CoQ10 and amiodarone questions
 
Virginia R's 4-25 reply to Jon's 4-24     cath & meds info & questions
 
Jon's 4-25 reply to Virginia R's 4-25     am also interested, new cath methods
 
Lori P 4-25     vision & dizziness episode, have questions
 
Bill D's 4-25 reply to Jan P's 4-24     meds dose changes
 
Muriel's 4-26 reply to Connie D's 4-22     swelling, coping
 
Muriel's 4-26 reply to Lori P's 4-25     vision disturbances, coping
 
Linda O 4-26     to Virginia, stomach problems
 
Bobby F's 4-26 reply to Virginia R's 4-24     cath experience
 
Jon's 4-26 reply to Bobby F's 4-26     cath question
 
Ann ? 4-26     dobutamine questions
 
Jon's 4-26 reply to Ann ?'s 4-26     dobutamine info
 
Virginia R 4-26     update, Bill, Prinivil & more
 
Heather S 4-26     update, my heart is well! & more
 
Hope M's 4-26 reply to Lori P's 4-25     digoxin possibility, iron & anemia
 
Ruth P's 4-26 reply to Lori P's 4-25     anemia from bypass, update, Ginger & more
 
Candy's 4-26 reply to Connie D's 4-22     one extremity swelling
 
Theo 4-26     ACE inhibitors
 
Sharon J W's 4-28 reply to El R's 4-22     look & feel of pacers & ICDs
 
Al M's 4-28 reply to Jon's 4-26     caths, TNF, weight & more
 
Jon's 4-28 reply to Al M's 4-28     TNF & beta-blocker confusion & more
 
Sara ? 4-28     update, meds question
 
Ben B's 4-28 reply to Jon's 4-26     caths
 
Hope M's 4-28 reply to Muriel's 4-25     sharing illness info with family & more
 
Sara's 4-28 reply to Heather S' 4-26     congrats, update & more
 
Robin W 4-28     update on hospital admit
 
Bobby F's 4-28 reply to Jon's 4-26     caths, CHF book & more
 
Helen O 4-28     intro, history, weight problem, questions
 
Jon's 4-28 reply to Helen O's 4-28     weight problems
 
Lori P 4-28     update on my dizziness & more
 
Maggie S 4-28     update, thanks & more
 
Robert F 4-28     Natrecor for CHF & the FDA
 
Renee M's 4-28 reply to Kim S' 4-24     setbacks on the SSD road
 
Renee M's 4-29 reply to Marvin B's 4-23     ACE inhibitors & loss of taste
 
Virginia R 4-29     update & meds questions
 
Renee M's 4-29 reply to Ann's 4-26     dobutamine experience
 
Robin W 4-29     caths
 
Jon 4-29     caths
 
Carolann 4-29     sleep apnea, foot injury, questions
 
Deb L's 4-29 reply to Sharon J W's 4-28     pacemaker locations
 
Paul M's 4-29 reply to Hope M's 4-28     I think you should tell them
 
Paul M 4-29     back in the saddle, vacation, questions
 
Noel 4-29     LVAD trial questions & more
 
Milo K 4-29     grin a little
 
Jon 4-30     been a bit tired
 
Luc D 4-30     hi all!
 
Jana B 4-30     update - staying busy
 
Louise N's 4-30 reply to Jon's 4-29     painless caths, remembering & more
 
Mike W 4-30     seek northern NJ doc or clinic
 
Ginger's 4-30 reply to Hope M's 4-28     telling children about your illness
 
Ben B's 4-30 reply to Jon's 4-29     weight, diets, sodium & more
 
Sara ?'s 4-30 reply to Virginia R's 4-24     cardiac arrest
 
Dennis F 4-30     maybe I have CHF, BP questions & more
 
Hope M's 4-30 reply to Paul M's 4-29     telling children about illness & more
 
Brian H 4-30     can enlarged hearts become "normal?"
 
Tom S' 4-30 reply to Jon's 4-29     painless caths
 
El R 4-30     upcoming EPS, heart rhythm
 
Jon 4-30     mailing list problems


Jill M, April 16, 1999 - Hi, I am an old regular, with a new question. My cardiologist has decided to add Aldactone to my daily regimen. I have just read a rather horrific list of side effects, and would like to know which ones, if any, those who take it have experienced. I remember Jon saying he was starting it last year. My EF has plummeted rather dramatically - from 42 to 26 - but I don't think I feel any different. jillm@iafrica.com


Jon's April 16 reply to Jill M's April 16, 1999 - Hi Jill, If he's adding it to reduce mortality rather than as a diuretic, as my doc did, the dose should be low - around 25mg daily. At that dose, I have felt zero side effects. Jon.


El, April 16, 1999 - Hi, I had a little episode last week. I was just sitting still, talking on the phone, and got real light headed. The room was spinning and I thought I would pass out. It lasted about 2 minutes. When I relayed this to my doctor, I was told I needed to have an arrhythmia work-up. He wants me to see an arrhythmia specialist. I will be surprised if we have one of those in town. What I have learned about it so far is a little scary. I think this is my second episode of this. I have an appointment next Tuesday with a doctor in town to whom my doctor referred me. He said I could not wait until I get down to LA to see him. Any info about this would be greatly appreciated. El.


Jack's April 16 reply to Robert F's April 14, 1999 - Hi Bobby, You asked about Zestril and Coreg mentioning that yours were different than other people's. The generic name for Zestril is lisinopril and the brand names are Acerbon, Alapril, Carace, Cipril, Coric, Linvas, Lipril, Lisipril, Lisoril, Lispril, Listril, Noperten, Novatec, Prinil, Prinivil, Prinvil, Tensopril, Vivatec and Zestril. The active ingredient is identical no matter what the brand name is. The same is true for all generic drugs. Buying the drug that uses the true chemical name does not mean that you are getting an inferior or even a different product but buying the brand name guarantees that you will pay more. The inactive ingredients used to make tablets and capsules large enough for you to handle may be different but those can vary from batch to batch within a brand name. The fillers are basic pharmaceutical powders chosen to be chemically inert and anti-allergic and don't change the quality or the potency of the drugs they are mixed with. Coreg is called Coreg in the United States and I don't believe it has been on the market long enough for different companies to be allowed to make it. Just remember when someone refers to a generic drug, it is exactly the same chemical compound as the brand name. When someone gives you a substitute you are getting something entirely different than what you were prescribed and it could cause you major problems. Jack. maddjak@hotmail.com


Jack's April 16 reply to Chuck's April 15, 1999 - Hi Chuck, Normal is a pretty hard thing to put your finger on. I've known a few people in my life who considered themselves to be normal but that was just their opinion. Nobody else seemed to agree with them. I'm happy being just as far from normal as I can possibly get but if you are wanting to know if you can be yourself, of course you can, even if you have to be a slower verson of yourself, but ven that's not written in stone. maddjak@hotmail.com


Ann Chamber's April 16 reply to Angie H's April 14, 1999 - Hi Angie, I have DCM and CHF, too. I just found this site and I am a believer that it is a Godsend. I need people to talk to about this. No one believes me when I am not feeling good. My EF is 30%. My husband is supportive and my children are scared if I show any weakness. Are there any good hospitals or specialists in the Missouri area? I feel like I am slowly wasting away and I am only 31 years old. I am on Coumadin, Lasix, prinivil and Zoloft. If anyone knows of any places or just want to talk, e-mail me. You can also IM on AOL using my buddy name RugRatADC. Thanks for a great site! dacadcannann@yahoo.com


Tom S' April 16 reply to Bill D's April 14, 1999 - Hi Bill, Longevity comparisons are often inaccurate and may promote false hope. There are a lot of folks walking around with enlarged hearts who have lived long and prospered, as my TV friend Spock would say. There is probably an equal number, if not more, of folks with the same condition that are already dead and buried. Some folks will live to a ripe old age, defying the odds. However, I belive the number of those afflicted with this disease who succumb at an early age far exceeds those that do not.


John Len, April 16, 1999 - Hi, I have just come back from a meeting with a representive of my HMO, which I joined as soon as it came out and offered by Medicare. Since then, they have taken over all the hospitals in this area, most of the health care providers and the health equipment companies.They claim that Medicare is not paying enough per person under the plan and the are going up on our premiums, co-payments and giving less service. They also claim that Medicare is only paying about half of the national average to this area per patient on HMOs. Being diabetic, with CHF, sleep apnea and a few other problems, no other supplemental health plan would take us. The idea is to either unload the high cost items (us), and keep only the young and healthy. Whatever happened to anti-trust laws? John. a_lenny6@hotmail.com


Sara, April 16, 1999 - Hello everyone, I wondered if anyone takes narcotics for pain. I have severe disc disease with vertebrae slipping in my spine. The doctor says not sleeping because of pain is too stressful on the heart but I am afraid it will weaken my heart more. Secondly, I am going home to Maryland and asked my doc here in Florida what to expect and how often should I be seen and how often an echo should be done to see if I am improving. He said once a month for doctor visits and echos weren't needed anymore since the first reading was enough to tell them how much my heart was damaged and that was it. I gained 5lbs in one week and he didn't say anything but in your posts, I noticed a lot of you adjust your own meds. Should I take more Lasix? I was on 40mg daily butmy BP went down too low and he cut me back to 20mg. I would love to hear from anyone with info. My EF is 25 and I have arrhythmia. He didn't mention rehab. Is that for everyone? Prayers to all. Sara. sunny33904@aol.com


Bill D's April 16 reply to Chuck's April 15, 1999 - Hi Chuck, Welcome to Jon's Place! Our forum is mostly composed of patients who have congestive heart failure and most of us haven't had strokes. We know that some things can cause them, like atrial fibrillation. Apparently the blood pools in the atrium and clots can form there. We take medications to prevent that. I would guess that how much damage was done by that "minor" stroke determines whether you can return to "normal." I assume you're talking about recovering from the stroke. If you're talking about returning to normal from CHF, you'd better click on Site Index at the top of this page and read "The Manual" to start educating yourself. What did you mean your heart is strong, 42.5 on the scale? We talk in ejection fractions and they can't be measured as close as that. Please read up and come back to us. Bill. billdog@gate.net


Bill D's April 16 reply to Ruth's April 15, 1999 - Hi Ruth, I think you need more than a place to share your miseries. You need to talk with a cardiologist, right now! To heck with what you weigh. I'll bet a lot of it is water and you need to get it off. Ruth, welcome to Jon's Place! In addition to the forums, Jon has compiled over 200 pages and links to information you should know about CHF. On the top of this page, click on Site Index. You'll find information about congestive heart failure, it's medications, medical procedures, tests and the reason they do them, what diet and exercise programs should be, information on the newest experimental drugs and procedures and how we try to cope with CHF. You really need to know those things! Bill. billdog@gate.net


Bill D's April 16 reply to Maggie S' April 15, 1999 - Hi Maggie, Welcome to Jon's Place! Isn't it surprising that we don't hear much about CHF? More of Americans die of it than die of cancer. Five million of us have it. Be sure to see all the info on CHF that Jon has hidden under Site Index at the top of this page. You seem to be on the standard medications and you could help give advice to patients who just found out. Bill. billdog@gate.net


Paul M's April 16 reply to Chuck's April 15, 1999 - Hi Chuck, For persons diagnosed with DCM, here are the chances: 1/3 will get worse leading to a transplant or death, 1/3 will stabilize at their present condition (with neds), and 1/3 will get better, possibly to recovery. I would hope that the more modern meds will change these percentages somewhat but until we get some new numbers, this is all I have to share. You only have a 33% chance of getting better. On the bright side, no one knows which group they will be in, so it's important to treat DCM aggressively and hope you are one of the lucky ones. Persons with DCM will usually find out which group they are in within 2 years of being diagnosed. My recovery from DCM took about 18 months and today I have normal heart function. paulmcferrin@worldnet.att.net


Paul M's April 16 reply to Ruth's April 15, 1999 - Hi Ruth, Having excess water in your system can have a snowball effect. With excess water, your heart has to work harder. This working harder can lead to more CHF symptoms such as SOB and fatigue. It also leads to additional water buildup at a faster rate. You really need to get the water under control and see your doctor. Possibly he can put you on a different diuretic that will minimize your depression side effect. There are a number of diuretics available. If you are holding water, this could be the cause of your putting on weight. If your doc keeps hounding you about your weight and is not treating your water problem, then get another doctor. Being overweight is not an excuse for a doctor to not treat you. You are paying him to treat you so get something for your money. paulmcferrin@worldnet.att.net


Russell B's April 16, 1999 - Hi, I just stumbled onto this site by mistake. It was one of the few mistakes I've made that really turned out good. I have learned more about CHF from this site than I have from any source since I was diagnosed with it 3 years ago. Doctors are absolutely necessary for treatment but are a very poor source of information. I can't thank you enough for sharing this information. Russell B. rab.lock@sympatico.ca


Candy's April 16 reply to Ruth's April 15, 1999 - Hi Ruth, Hasn't your doctor told you what you have, or run any tests to determine your diagnosis? If you have been retaining fluids for several years, there must be some problem. I don't think Lasix has those side effects. For heaven sake, go back to a doctor and tell him to check out your heart closer. It sounds like you need a new doctor. GrPota@aol.com


Jim H, April 16, 1999 - Hi everyone, I just want to correct a mistake I made on my last post. I did not have 2 valve replacements, I had the mitral valve replaced and the tricuspid valve repaired. I hope everyone is feeling well today. I feel pretty good myself so far. I'm sorry about the mistake. I don't think any of us need for things to be worse than they are, do we? Take care all and God bless all of you. Talk with you soon. Jim. Bubba2ha@aol.com


Joy R's April 16 reply to Heather S' April 15, 1999 - Hi Heather, I enjoyed reading your posts and how you can have humor even when you have to struggle daily. I will keep you and your family in my prayers. I have IV tubing I carry around also and it is a catch all. I've tried wearing it on my back, on my hip, and an IV pole but no situation is perfect and I am forever catching it on furniture doors and even the dog. So I can imagine you have sore ears as mine pulls on stitching holding a double cathether in place in my chest. I find if I tape the tubing and then put a safety pin in the tape, I can tape it to my clothing so the pull is on the clothing where it is pinned, not the hole in my chest that stays so sore. Maybe you could try that with the O2 tubing so the pull wouldn't be on your ears. With my O2, I find that my nose is what gets so sore and dry from using it, to the point where the tissues just end up bleeding and I don't use O2 all the time like you do. Do you have a lot of trouble with that or does anyone have any ideas what makes that better? I do use humified O2 and that does help a little. I hope all goes well for you in the hospital. Joy R. wapalaremi@aol.com


Ben B's April 16 reply to John B's April 14, 1999 - Hi, Do you know if endothelins are the same thing as TNF, or similar? My medical dictionary only refers to endothelium and cancer of the endothelium. Anybody know anything about this?


Jon, April 16, 1999 - Hi, My wife took a generic form of Norpace for awhile and had all kinds of problems. Her electrophysiologist switched her to the brand name version and her problems disappeared. He said this is not uncommon. I took a generic form of a common narcotic for a while but had little luck; the brand name of the same drug did the trick. Generics are supposed to be exact replicas of brand name drugs but this is often not quite true. I usually try a generic version of a new drug first if possible and if all is well, I stick with it. If not, I switch to the brand name and see how it goes.
     John Len, anti-trust laws do not currently apply to HMOs and other health insurance companies. This is something I write to my Senators about since it causes much woe. Because of this, health insurers can dictate most contract terms to those with whom they contract - hopspitals, clinics and individual doctors. This leaves many patients out in the cold. We often blame the hospital or clinic for this but they are bound by contractual agreements with insurers and they do not have sufficient clout to obtain more favorable terms for themselves or their patients. Until health insurers are brought under the same legal code as the rest of America's businesses, this will only get worse. Medscape has an interesting doctors' discussion about this.
     For what it's worth, Medicare has once again cut their re-imbursement rates, placing them far below actual cost in many instances. A record number of healthcare groups (hospital owning corporations) are dropping Medicare contracts or not renewing them in 1998-1999. A crisis is in the making - very quietly - but legislators allow HFCA and other government bureacracies to have their way at the expense of patients across this country. Write your legislators and be sure you have registered to vote before doing so, if you really want to effect any changes in this system.
     Sara, Some people here do self-adjust their meds but most of us consult with our doctors about it first. I talk to my CHF doc via e-mail. Most CHF specialists will explain to their patients the need to watch for edema (swelling from water retention), how to spot it and when to briefly increase their diuretics to keep it from getting out of control. Talk to your doctor about this since it can screw up your potassium and magnesium levels, which need to be compensated for with slow release prescription potassium and possibly magnesium supplements as well. Don't just stop taking a drug or change the dose without consulting your doctor by phone or e-mail, if not in person.
     Joy R, I use a salt water (saline) nasal spray to keep the inside of my nose and sinuses moist when using oxygen. This is over the counter stuff, which my doctor suggested I use. It works well.
     Ben B, the two are not the same. According to some of the medical dictionaries I went to from my Links page, endothelin is "any of a group of polypeptides that are powerful vasoconstrictors." TNF is "a protein that is produced by monocytes and macrophages in response especially to endotoxins and that activates white blood cells and has anticancer activity." The Merriam-Webster medical dictionary available through my Links page is very good. Jon.


Angie H's April 17 reply to Ruth's April 16, 1999 - Hi, Ruth, I read your post and tried to send you an e-mail but it kept coming back to me. I have a similar situation as you and would like to e-mail you. When you read this, please mail me and I will get back to you. GABAT3@aol.com


Rosamond S' April 17 reply to Ruth's April 15, 1999 - Dear Ruth, You do sound desperate and I would love to e-mail you with any insights I might have that might help. Your e-mail address did not respond. It makes me angry that you have been so alone in dealing with your medical problems. I'm so glad you found this site. Be sure and read The Manual and all the other gold-lodes of information. It will give you ammunition to deal with your next complete physical. Feel free to write if you like. Hang in there, Ruth. Roz S. Rwarriston@aol.com


Sara's April 17 reply to Jon's April 16, 1999 - Hi Jon, Thanks for the info regarding adjusting meds. Regarding your wife taking Norpace, I have been on Norpace 400mg daily for 5 years. My doctors highly recommend brand names but when l was diagnosed with DCM/CHF 5 weeks ago the cardiologist took me off that and put me on cordarone. He felt it would help my left ventricular dysfunction better and incidently both cordarone and zestril (which I also take) have terrible side effects that can throw you into a spin but my doctor said to not read about it since I need to take both these meds. Wishing you and your family well. God bless you and all of those with "sick" hearts. Sara. sunny33904@aol.com


Paul M's April 17 reply to Sara's April 16, 1999 - Hi Sara, I think your doc is wrong about using an echocardiogram to only make initial diagnosis. How is he going to know whether you are responding to treatments? They can't make that judgement based upon how we feel. We can be felling fine while clinically we are going downhill, possiblly causing more damage. Or we we can fell lousy all the time and our condition can be stable. Go figure. I would think that a minimum number of echoes would be one every 1-2 years. That's a minimum. If your doc is going to stick to his guns on this issue, then maybe a new doctor is in order. paulmcferrin@worldnet.att.net


Staci H's April 17 reply to Jill M's April 16, 1999 - Hi Jill, I was put on 25mg of Aldactone back in February and have not noticed any side effects either. How much are you taking? Wishing you the best of luck! quirki98@aol.com


Tom S, April 17, 1999 - Hi, I had a call from my dear ol' mother-in-law concerning her state of health and other family matters. My mother in law lives a good 8 hours to the north in another state, so our contact is minimal. Ironically my mother in law, a heavy, overweight sextiginarian was leveled by DCM and CHF about 6 months before I pooped out with the same thing, now 4 years ago. Ironically, she barely skipped a beat with all her bad habits, including smoking, an occasional snort on the whisky jug, and ingestion of mass quantities of cholesterol laden goodies. Despite all this, she continues to huff along like the little train that could. It's folks like her who blow the mortality curve all to heck, and wind up on Bill D's stories of extraordinary survival tales from the CHF crypt.


Ginger's April 17 reply to Sara's April 16, 1999 - Hiya Sara, I take narcotics and have been off and on for a year, inclufing a lot of them recently. I take Vicodin and Percacet. Right now I am off them. I had epidural steriod injections for the pain and so far they are helping. I was worried about being on narcotics too. My doc told me they wouldn't affect my heart condition and I trust him. I hope this helps. All those that are new and want to talk, come to our chats. Hugs, Ginger. mystery@laker.net


Al M's April 17 reply to Jon's April 16, 1999 - Hi, If you want to write your legislators, you can find info on how to reach them at http://thomas.loc.gov/. This gives listings of all things related to Congress at the national level, the House of Representatives and the Senate. There are the names of the representatives, their e--ail addresses, mailing addresses, phone numbers and home page Urls. Committees and sub-committees are shown, with the bills they are considering and thier members. If you are unsure of your representative, there is a box where you type in your zip code and street address, and your representative is identified.
     Other useful pages are http://www.ahcpr.gov/. that search and http://www.hhs.gov. If you would like the Url of a page which will humorously guide you in writing letters to your elected officials, drop me an e-mail and I'll pass that on to you. Al M. ajmiii@web-access.net


Jon, April 17, 1999 - Hi everyone, I lost all the posts from 4-10-99 so if you see the gap in The Archives, you'll know it was unintentional. I'm not sure how I managed it. There was a big white space in my source document, so I had data there at one time but it never got properly saved. Probably sleep deprivation. Jon.


Debbie F, April 17, 1999 - Hi, I stumbled across this site by mistake and I'm glad I did! It was great to be able to read what others have written. While doing that, it seems like you're reading about yourself. I was diagnosed with cardiomyopathy and CHF 3 years ago. I had a viral infection during my last pregancy and the result was cardiomyopathy. My EF is 30-35%. I'm currently on Coreg, Lanoxin, Vasotec, Lasix, and potassium. I also experience, SOB, extreme tiredness, and cannot lay flat to sleep. I try to rest as much as possible but with 4 children, sometimes that's just wishful thinking! Anyone who would like to talk can e-mail me. Thanks for listening. Debbie F. Pezzer@aol.com


Doris, April 17, 1999 - Hello all, Thank you Jon, this is my first visit to this page and I am already learning a lot. I was diagnosed with DCM/CHF in August of 1998. I am 47 years old and live with my husband and my soon to be 4 years old daughter - my menopause baby! I am on: 25mg Coreg, Vasotec, nitroglycerine, Coumadin, furosemide, K-Dur, and nitrolingual for emergencies. In August, I was told my EF was 10%. Is that possible? Did I misunderstand? It was my hope that I would get better. I feel better since Coreg but I was in hope of recovery. Is that not possible without a transplant? Each time I see my doctor, usually once a month, he puts off referring me to Loma Linda by 3 months, so I believed I was getting better and that recovery was possible. Also, I need to lose about 50lbs. Can you tell me if a diet I got from friends called the New Mayo Clinic Diet is on the level? They claim this diet is given to heart patients needing to lose weight fast for bypass surgery. I am unable to exercise right now but that is one of my goals. I still do my own cooking and looking after my little one but I need more energy. I hope the weight loss will help. I am looking forward to any helpful replies or advice. Thank you, Doris. RoughGoing@aol.com


Angie H's April 17 reply to Ruth's April 15, 1999 - Hi Ruth, I have hypothyroidism too. I have had it for the past 8 years. I have been to so many doctors for this condition and have just recently - last month - gotten my TSH level normal. As a matter of fact, the same day I found out my TSH level was normal, I found out that I have CHF. I have had a fluid retention problem for as long as I have had hypothyroidism. The doctors automatically tell you that the fluid is a result of your thyroid. About 6 months ago, I was slowly getting worse and they still told me the same thing. I kept insisting that there was more to it than that and more to what I was feeling than being overweight. They finally listened and did some tests on my heart. Then the big news of "You have CHF." So my advice to you is, don't just settle for what the doctor says. You know your body and how you feel. Be persistent and if they don't want to do anything, find another doctor. They are just like us, only human and they do overlook things and make mistakes, unfortunately. My doctor told me when I was diagnosed with CHF, that it more than likely came from my hypothyroidism. If you would like to talk further, just post a note or e-mail me. Good luck to you. Gabat3@aol.com


Ben B, April 17, 1999 - Hi, I have heard that anti-rejection drugs for transplants cost anywhere from $20,000 to $30,000 a year. Is this true? Is this true for transplant of any organ? How can anybody afford this, on top of a transplant operation, and all the aftercare? Do insurance companies actually pay for this stuff? I'm just curious if anybody knows or could steer me somewhere.


Bill D's April 17 reply to Ann Chambers' April 16, 1999 - Hi Ann, Welcome to Jon's Place! In addition to the forums, Jon has gathered over 200 pages and links to information you should know about CHF! On the top of this page, click on Site Index. You'll find information about CHF medications, medical procedures, tests and the reason they do them, what diet and exercise programs should be, information on the newest experimental drugs and procedures and how we try to cope with CHF. Many of us print out "The Manual" to show folks who don't understand how we can look so well and still be sick. Bill. billdog@gate.net


Bill D's April 17 reply to Sara's April 16, 1999 - Hi Sara, I'm concerned your doctor said you wouldn't need any more echos done. I didn't understand whether you meant of your back or of your heart. Most of us get an echo for our heart at least once a year. I have had a fusion operation on my back. They welded 3 of my vertebra together. I still had occasional problems trying to dance the Limbo but it was a lot better. Now that I've lost a lot of weight, the problems disappeared. Do you weigh yourself in your birthday suit every morning before breakfast? How much weight do you gain from day to day? Tell your doctor that before you adjust your diuretics. Bill. billdog@gate.net


Bill D's April 17 reply to Russell B's April 16, 1999 - Hi Russell, I'm glad you found us. The more you learn about CHF, the more you can understand why doctors don't have time to tell you about it. They would have to sit down and spend all day to cover just part of what you'll learn at Jon's Place. Welcome, Russell. It's nice to have you around! Bill. billdog@gate.net


Christine, April 18, 1999 - Hi, I have not written recently since I was having some anxious times, I could not lie down flat for the cardic stress test. I tried 3 times but had to come home very upset and I have never been like this before. Then my mail order vitamins arrived, with the CoQ10, which I started to take and noticed a calmness. You won't believe this but I underwent the test without any problems. I was feeling very claustrophobic previously but this time I was able to handle it. I think the CoQ helped. Has anyone had this kind of problem? I believe my EF is 53%. I should be seeing my doctor any day. Will they still put me on Coreg at this percentage? Curently I am on 25mg Cozaar twice a day and 10mg Mevecor. I am an insulin dependent diabetic and was told by my doctor that this could mess up my sugars - especially could give me low sugars - has anyone had this problem?
     My problem is blocked arteries which are too small to do anything about so they just want to put me on medication to extend my life a little. I have read that soy lecithin is very good for clearing up the arteries and that it acts like a flush. What do you think? Has anyone tried this? I have taken about 2 tablespoons a day with my oatmeal or with some baked zucchini bread. I sprinkle it on top. It does make me feel good but if it is really doing what is said, I have no way of knowing. Well folks, I do hope you can pass along some insight on my questions since I have herbalists swearing by the soy lecithin. Thank you and I will be looking forward to your e-mail. Aloha and God bless to you as we all hang along in these times with one another. Christine, age 48. Chrisd1950@aol.com


Jon's April 18 reply to Christine's April 18, 1999 - Hi Christine, About the soy lecithin, it doesn't do an actual "flush" of your arteries but if it is making you feel better and as long as you research it and are sure it won't harm you, I say why not take it? Just remember not to overdo it, okay? Jon.


Brenda George, April 18, 1999 - Hi, I have been reading all the articles posted. I am interested in the differences of treatment between the USA and New Zealand. I was born with congenital aortic stenosis in 1955. I had my aortic valve replaced in 1973 with a homograph valve. I have kept reasonably well and also have epilepsy and asthma. I started to have arrhythmia in the 1980s. Last year I was diagnosed with CHF and told I will need my valve replaced again in the next 2 years. One medication that I had a lot of trouble with was accupril. I developed a severe cough and breathlessness. I was unable to lie down or say more than one sentence without breathlessness. I am now taking Adalat (nifedipine - a calcium channel blocker), sotolol, slow K and furosemide. I am 43 years old and am married. I have two daughters aged 18 and 21. I am looking for an e-mail friend who also has heart problems and work family responsibilites. Last year I completed a Bachelor of Social Science degree and am now working on a Master in Social Work. I work as a Community Development worker for 30 hours a week. I find if I keep a fairly unstressful life, I keep well. However, this has not always been possible. I look forward to hearing from you. Brenda. b.e.george@inet.net.nz


Gaile C, April 18, 1999 - Hi all, Ruth, I want to share (briefly) how I ended up with CHF in hopes it won't happen to you. I was treated for high blood pressure by a general practitioner from the age of 16 (that's right!) to ageS 40. At age 40, he did my first EKG. It was abnormal with LBBB. He told me not to worry and said that I was probably born with it. He never referred me to a cardiologist. I felt fine then, so I continued with him. Then it all went downhill fast. At age 42, my ankles began to swell to grapefruit size. I was short of breath just vacuuming the house or walking up one flight of stairs. I kept gaining weight, especially in my abdomen. The doctor gave me a prescription for "Job's support hose" for my ankles and told me to lose weight. Finally, the extreme fatigue set in and I got my medical file from him and took myself to a cardiologist. Echocardiograms revealed DCM and class 3 CHF with an EF of 25%. One month of heart monitoring revealed tachycardia. My heart rate was rarely below 95, even in sleep! Ruth, heed the warning signs now and get yourself to a cardiologist ASAP. Had I trusted my own instincts and acted sooner, I might not be in the boat I'm in now.
     I have a question for everyone. I am going to type a word I have never seen come up in the posts - medical malpractice. What do you think? I believe my GP was negligent in not referring me to a cardiologist with my first abnormal EKG, then the swollen ankles, shortness of breath and extreme fatigue - all classic symptoms of CHF. Also, my cardiologist believes my DCM was caused by tachycardia that was left untreated for 26 years. The blood pressure meds I was on did not lower my heart rate. My GP was aware of my elevated heart rate but did nothing about it. What do you all think? I have never filed a lawsuit against anyone in my life and do not relish the idea of doing so now. I would like payment of my medical expenses, past, present and future.
     PS. Please answer by e-mail, not by post. Thanks! gailec@netscape.net


Jim H, April 18, 1999 - Hi everyone, I would like to know if anyone has had a bad effect from metoprolol. I am not convinced it didn't play a part in my lung disease. It was the last med they put me on when I left the hospital. Soon after that, I started having breathing problems. The doctor says meds did not cause it, but I am not sure. If anyone has any info on this, please let me know. E-mail me if you can. Thanks and God bless. Jim. Bubba2ha@aol.com


Jack's April 18 reply to Doris' April 17, 1999 - Hello Doris, You asked about the Mayo Clinic Diet. Well, to use the words of the Mayo Clinic, "There is no Mayo Clinic Diet." It's an urban legend. Here is the Mayo Clinic web site at http://www.mayoclinic.com/invoke.cfm?objectid=8E199485-EB00-418B-B6BF8BED83C675E7 explaining it. Any good diet will allow you to lose weight. Any scam involving dubious food groups or diet aids will further damage your already shaky health. Eat sensibly and eat less. That's the only thing that works safely. Jack. maddjak@hotmail.com


Phyllis' April 20 reply to Ben B's April 17, 1999 - Hi, There are some organizations that help with the cost of tranplants for the needy. One of them is National Transplant Assistance Fund at http://www.libertynet.org/_txfund/, also at 800-642-8399. There is also the Organ Transplant Fund at http://www.otf.org/ and also at 800-489-3863. I think that some insurances help pay the cost of drugs. I think my insurance will help with the medication and they pay quite a bit on the actual transplant. I hope this has been of some help to you. pwatjen@vincennes.net


Angie H, April 20, 1999 - Hi everyone, I have a couple of questions. I keep reading so much about Coreg and it seems that most CHFers are taking this drug. I am currently taking Diovan and Demadex. I was diagnosed in March, 1999. I have had a few tests and am due to go Wednesday of this week for a MUGA. Is there anyone out there who is taking this medication besides me? I am kind of skeptical at this point about my doctors but I am going to hang in there for a little while longer. I work in the medical profession, so I know that if you are unsatisfied, go somehwere else. Also, my doctor took me out of work for 2 weeks and I have been out a week now. Since being out, I have had no swelling at all. I feel that they will send me back next week and I know physically, I am not able to perform my job. I work in a hospital with bedridden geriatric patients. When I do the least little thing, I get shortness of breath. Also, I was wondering if anyone knows if not being able to sleep is a symptom of CHF? I have not been sleeping well this week and I have never had problems sleeping. Thanks for listening and I would appreciate your answers if anyone has any. Gabat3@aol.com


Jon's April 20 reply to Angie H's April 20, 1999 - Hi Angie, Diovan is an ACE 2 inhibitor and Demadex is a diuretic. Both are eminently suitable for a CHFer's treatment. Coreg is a beta-blocker and you should ask your doctor about beta-blocker therapy to see what he thinks. I have had serious getting-to-sleep problems ever since getting CHF. When I build up a really bad sleep deficit, I take sleeping pills (10mg Ambien) prescribed by my internist. They help a lot but I no longer take them every night to prevent tolerance from developing. Jon.


John Len's April 20 reply to Christine's April 18, 1999 - Hi Christine, Before I had my first bypass, I tried soy lecithin. I got it by the quart bottle. I also went on the omega-3 fish oil plan and walked up to 5 miles a day. After all that, I still had my first 4 way bypass. The good news is that after 10 years, I'm still here and kicking. :-) John. a_lenny6@hotmail.com


Lori Pearson, April 20, 1999 - Hello everyone, Just a quick note to spread the happy news: Yesterday was our wedding day and everything went great! I felt great, only 2 weeks after my open heart surgery and proved the doctors wrong. Hehe! I just wanted to let you all know. :-) lwilson@cdsinet.net
 
Jon's Note: Congratulations!


Paul M's April 20 reply to Christine's April 18, 1999 - Hi Christine, My experience is taking heart medicines is exactly the opposite of your doctor's claim. I'm insulin dependent and was under reasonable control. When I went to the ER with CHF, they started me on several meds (see my bio). While in the hospital, my blood sugars went wacko, to the high side. To get my sugar levels back under control, it took at least one month to stablize at more than double my original insulin dose. Now that I'm off my heart meds, my insulin needs are beginning to "slowly" become less, although I am opting for better sugar control. paulmcferrin@worldnet.att.net


Jack's April 20 reply to Christine's April 18, 1999 - Hi Christine, Lecithin is used in food processing and is also a major component in food for aquatic animals. It's used to make mayonaisse and lot's of other foods. Lecithin will do nothing for your arteries. It is used as an emulsifier which keeps substances in suspension to remain in suspension and not separate. Herbalists can be dangerous and if you follow their advice, you might put yourself at risk. They push alleged remedies that either work counter to your prescription medicine, enhance your prescription medicine or just waste your money. Herbs should be used to season food. Sick people should stay away from them and if you are not sick, what is the point of taking medicine? Jack. maddjak@hotmail.com


Bill D's April 20 reply to Doris' April 17, 1999 - Hi Doris, Welcome to Jon's Place. Yes, your EF could well be 10%. Please read The Manual. It will give you an idea of just how serious an EF of 10% is. Print it out for your husband. You must lose that extra 50 pounds to take the extra burden off your heart. Click on Site Index at the top of this page. There's lots of information there that you should know! The more you know, the better chance you have to live! You need to get by on the heart you have as long as you can. Bill. billdog@gate.net


Bill D's April 20 reply to Debbie's April 17, 1999 - Hi Debbie, We're glad you stumbled across us too. Welcome to Jon's Place. Please go to the top of this pace and click on Site Index! Jon has a wealth of information on CHF for you. You might start by reading "The Manual." Don't forget to go to "Who's Who." Many of have bios and pictures there! There's far more here than just the forums! Bill. billdog@gate.net


John ?, April 20, 1999 - Hi, For my fellow diabetics with CHF; 5 weeks ago, I started on a high protein, low carb diet. Three interesting things happended. My diabetes has all but disappeared. I have already cut my dose of glucophage and glyburide in half, and still am running under 100 on my glucose test. My cholestoral seems to be falling. It was 250 and is now 213. Unfortunately, I am not losing much weight - the whole reason I am on the diet - just 4-6lbs. I have thus far been under 40 grams of carbs a day. That means lots of meat, fish, and poultry. Cheese is also ok but almost no other kinds of foods except in very miniscule quantities. It's a meat lover's dream diet. Both my cardiologist and my diabetes doctors looked at the diet and said it was ok by them but of course, you should check with your doctor before you try it. I am amazed at the effect on my diabetes and plan to stay on it for that reason alone. I do believe I could lose weight on it too, if I could cut the 20oz steaks in halves or quarters and go from 2 egg/2 eggbeater (four "eggs") omelettes. That's my next goal, to lose weight with it. jbott4015@aol.com
 
Jon's Note: Just a reminder to beware of cheese - it's very high sodium, for the most part


Anne M, April 20, 1999 - Greetings everyone, I've been keeping in touch with all of you by checking here daily. I hope someone can help me with some information. In addition to Vasotec, digoxin, potassium, Lasix and CoQ10, I have just been put on amiodarone, as well as slowly coming off clonidine. The clonidine was started in the hospital after a bad rebound from coming quickly off a trial of moxonidine. Then it turned out that I am allergic to the clonidine, so I had to have prednisone to control the side effects. Fortunately, I can get off the clonidine and hopefully the amiodarone will pick up where it leaves off. I understand all the potential side effects but would really appreciate any feedback from those of you who have been taking amiodarone yourself. The business of turning a lovely shade of blue from exposure to the sun doesn't thrill me! I look forward to hearing from anyone with information. Thanks, Anne. cmeda@istar.ca


Christine's April 20 reply to Jon's April 18, 1999 - Aloha and thanks for your reply. I guess that is the the best bet we can go by; if anything is working for you, do it, but in moderation. I am still very interested to know if anyone has been able to find out any more information on the lecithin flush and if they have been able to prove that it did what it is supposed to do. I guess it would be nice if anyone has heard or knows where I can find more information on this subject. I would like to look into it. It seems to be exciting because as I said, I have no surgical option per my cardiologist. Do I need to get a second opinion? Thanks again and I hope to hear from anyone who can give me some insight into this. Aloha, Christine. chrisd1950@aol.com


Jon's April 20 reply to Christine's April 20, 1999 - Hi Christine, Always get a second opinion - this is your life! Have you used the Links page to find good places to search for lecithin info? There is also a link there to an herbal information site. You need to stretch your Internet legs and the Links page is a great place to start. Jon.


Al M's April 20 reply to Ben B's April 16, 1999 - Hi Ben, I don't know if this will be helpful or not. It is an excerpt from an e-mail from a friend of mine who now teaches at the University of New Mexico. I met him as one of the doctors who was involved with the BEST trial that I am in. He's a doctor of pharmacology. The Dr. Murray he refers to is David Murray, the doctor running the BEST trail at the University of Texas in San Antonio. The excerpt is in reference to what the BEST study is trying to show. TNF is mentioned as well as a new study.

     "What we are testing is whether or not bucindolol (a beta-blocker) leads to a reduction in levels of TNF-alpha (tumor necrosis factor a). We know a couple of things: 1) TNF levels are higher in patients with CHF than people without CHF; 2) TNF has been shown to depress the heart's pumping capability. If beta-blockers do improve CHF, we do not know the full reason as to how they do it. So Dr. Murray's study is trying to determine if levels of TNF are lowered in patients who receive beta-blocker therapy. Now even if the levels of TNF are lowered in the group of patients on beta-blockers, you cannot prove cause and effect. Elevated TNF levels may merely be a marker of advanced or deteriorating heart function and as you improve the function of the heart, the levels are lowered (therefore an indirect relationship to beta-blocker therapy). Having said all that, we are starting a study soon of a bio-engineered compound that binds up the circulating TNF in the blood. Preliminary studies with the compound have demonstrated an improvement in the heart's pumping ability and an improvement in symptoms. So it will be interesting to see how that study and Dr. Murray's study play out."

     I hope that is of interest to you and beta-blocker users. Good health. Al M. ajmiii@web-access.net


Julia H, April 20, 1999 - Hi, I was recently diagnosed with postpartum cardiomyopathy and my EF is 48%. Thanks to all who recommended Florida Heart Group. I like Dr. Finkle. I am going in for a stress echo in a few weeks. I never heard of this type of test before but I swear that's what they said. Any idea what to expect? With an EF this high, I still have SOB, chest pain and fatigue at times. Why is that? I am not yet on meds. Do you think I will be? Should I start taking CoQ10 or wait to ask my doc about this? Is there anyone else out there with postpartum cardiomyopathy? If so, have you been advised not to get pregnant again? Thanks, Julie. Juliahenry@aol.com


Lee R's April 20 reply to El's April 16, 1999 - Hi El, I am a little behind reading the posts but wanted to get in touch with you regarding light-headedness. I had the same problem and my cardiologist referred me to a specialist, too. These specialists are electrophysiologists who are cardiologists, but with extra training in EP Studies and are Board certified. I know it is scary but your doctor is right on top of things. Jon has some pages on arrhythmias and also ICDs, which is a little device they implant in case you are having nasty arrhythmias. It is like having an emergency room in your chest. I'm not saying you need one, only that it should be checked out. I've had an ICD since July of 1998 and it's done a great job for me. There are also some pages at my site on arrhythmias and some links to find more information. The URL is www.heart-help.net/. Feel free to write to me, or some of the others here at Jon's Place who also have had these problems. Let us know how your test goes. Bestest, Lee. LeeRoush@aol.com


Lee R, April 20, 1999 - Hi Friends, A thank you to all, for your thoughts and prayers for my husband. Ron's colon surgery went well and it looks like the cancer has been caught in time. We will know definitely when the pathology reports are completed. He's resting at home now and getting a bit grouchy, so I know he is doing ok! <G>
     To all you ICDers out there, I really need your help. I am trying to get together some information for people who need ICDs, or need to go through an EP Study. Any experiences, particularly about that first "shock to the system" would be really helpful to those who are wondering what the experience of being zapped really feels like. One of my friends had "it" in the shower! Now she takes baths. If you are willing to be on a support list, that would be great, too. This is your chance to share those great zap stories! Thanks for your time in doing this to help others. LeeRoush@aol.com


Will W, April 20, 1999 - Hi all, It has been a while since I posted but I read everyday. I thought I would pass on some information you may like to hear. We went to a heart transplant recipient's dinner last weekend, put together by the transplant hospital for all those who have received hearts from them. This is the 15th year this dinner has taken place. At the end of the evening, they give out sweatshirts with a logo and the number of the transplant that you have. I am number 266 and was transplanted on December 19, 1996. The last transplant at this hospital was done in March of 1999 and is number 297. That is a period of 21/4 years and tells you of the shortage of transplant donors. One of my friends there has been waiting, in the hospital, for one year, as of April 1st. Please try to get people to sign donor cards and to convince the relatives of donors that this is what they want done. There are many people who are potential donors but the family refuses to release them. There was one person who became a first at the dinner. He first received a heart in 1988, then after rejection got another in 1994 and still another in 1998. There are several who have received a second transplant but he is the first to have 3 transplants. He is one of those people who have the "normal" qualifications for most people. I hope I keep this one as long as I need it! Good luck to everyone. Stay well. heart266@tco.net


Renee P, April 20, 1999 - Hi, A quick question. My doctor wants to put me on an antidepressiant. Is anyone else on anything? I was on something for a month after my last back surgery but it made me feel like Jeckle and Hyde. I can't remember the name but I do know I didn't like it! Would this drug help me or just be another pill to buy? Any info and side effects would help me make the decision. Thanks, Renee P, age and EF 42. heartdwn@newnorth.net


Robin W, April 20, 1999 - Hi all, I'm gearing up this week for my Club Med stay, set to begin next Wednesday, 4/28. I've been busy getting a lot of little things done and tying up loose ends. I was wondering if anyone else has experienced an SSD problem I'm having. I was contacted in November about whether I wanted Medicare Part B or not. I sent it back saying no. Starting with my December check, they began taking out the premium anyway. I called in February and they said sometimes it takes a few months for them to catch up. Well, here it is April and they are still taking out the $45 something per month. I called today and they told me they did have me down as denying coverage and were not taking out the premium. I got my checkbook and did the math and all my deposits since December were $45 and some change less than they were supposed to be. She claimed she could not access the numbers of the the amounts that were deposited at my bank. I was told that I could get the records from my bank and they would have to be taken to my local SS office or copies could be mailed to that office. Any other suggestions how to handle this? It seems strange to me that they know how much I get each month but cannot see a record of the exact deposits. Oh well, if necessary I'll just have to make a trip to the bank. Take care everyone, talk to you soon. Robin W, EF 8%, age 31. I notice we have another Robin now. I'll always use my last initial so as not to confuse us. jwilson@nb.com


Jana B, April 20, 1999 - Hi, When I was on Coreg at 6.25mg, I did ok but now I get this weird upset stomach. I am hoping someone else can help me put it into words so I can explain it to my doctors. What it feels like (kind of) is like I am full or starving, I haven't decided which. When I eat, no matter what and no matter how small the portion, I get this upset stomach. It feels like I am stuffed if I even eat half a banana. If I don't eat, I feel sick too. It is a miserable feeling. I am at the full 50mg of Coreg now and I am also wondering if any of you have had a doctor drop you back down to a level that is more tolerable. I felt really good at 6.25mg with no stomach problems and had all kinds of energy but now I am just plain sick and quite honestly, I would rather go off the meds and die than be this miserable and tired all the time. There is no quality to life right now. I was hoping I could drop back to 6.25mg and still get beneficial effects from the Coreg. Jbyers4u@aol.com


Jon's April 20 reply to Jana B's April 20, 1999 - Hi Jana, I also had that fullness whenever I ate, no matter how little, but I thought it had to do with my weight gain. I dropped my Coreg from 50mg twice a day to 25mg twice a day and the feeling has not hit me since. I have lost only 2 pounds since, so that isn't enough to make such a change. Maybe it was the Coreg (or something else entirely). I never even considered Coreg as a culprit and still don't know if that's what it was. I just thought I would tell you about it since you brought it up as a possible side effect. My stomach also got hard to the touch whenever I had this feeling. Jon.


Sara's April 21 reply to Anne's April 20, 1999 - Hi Anne, I have been on amiodarone (brand name Cordarone) for 3 weeks and so far I haven't turned blue. Being in Florida, I can't avoid the sun. I have ventricular dysfunction with arrhythmia, an EF of 25, DCM and CHF. I take Zestril and Lasix. The only new problems I am having are headaches, my stomach (can't describe it - just weird) but these meds are new to me. My doctor started me one at a time and it's either an accumulation or the amiodarone. Good luck, Sara. sunny33904@aol.com


Sara's April 21 reply to Julia H's April 20, 1999 - Hi Julia, Regarding a stress echo test, which I had for the first time in March, when I was diagnosed with CHF. I have had cardiomyopathy for years. I have never had the 2 together, so it must be pretty new finding this procedure more effective. You get wired, then the echocardiogram is done, (all in the same room), then you do the stress test, then you get back on the table as fast as you can for another echo. Usually 2 doctors and a nurse are with you and you will get the results as soon as the test is completed. This test is very effective. It shows the heart at rest and at exercise together. I belong to the Florida Heart Group in Fort Meyers, too. Is this the same heart group you are talking about? Good luck, Sara. sunny33904@aol.com


Bob, April 21, 1999 - Hi, I discovered I had CHF 5 years ago but have just discovered this forum. I am interested in what others have experienced. hermit@gte.net


Bill D, April 21, 1999 - Hey Regina,Yoohoo! Why haven't you called me? I'm in the phone book. We drove around your community looking for you! There are just too many houses! Bill. billdog@gate.net


Bobby Farish's April 21 reply to Renee P's April 20, 1999 - Hi Renee, I was put on an antidepressant called Paxil. I felt that it was working ok until, for the first time since my marriage, I couldn't perform. At 47 years of age, I was really worried that I had reached that age of being impotent a lot earlier. After several attempts, my wife suggested looking up my medications and side effects on the Internet. Well, one of the side effects was exactly that. Needless to say, I threw that bottle as far in the field as I could get it. I haven't gotten anything new yet as I'm trying to handle depression in another way and that's trying to stay busy and keep my mind occupied. Nonetheless, there are others that I'm sure that your doctor could recommend, so if you're in need of something, I'd sure give him a call. Just don't get Paxil! lfwcor@washingtonnc.com


Lee R's April 21 reply to Will W's April 20, 1999 - Hi Will, or should I say #266. That sounds like a good number! I just wanted to say hi to you and hope you keep in touch. You reminded us of an important issue - organ donation. Take care, Lee. LeeRoush@aol.com


Lee R's April 21 reply to Renee P's April 20, 1999 - Hi Renee, I wanted to let you know that I am on an antidepressant - Prozac - and the side effects were minimal for me. It would take the drug awhile to take effect, probably 3 to 4 weeks. All I can say is that for me, it works well. You mentioned that your doctor wants to put you on it, but do you feel you need it? If so, you might want to try. Be careful; some anti-depressants are not good for heart patients. Take care. Bestest, Lee. LeeRoush@aol.com


Lee R's April 21 reply to Jana B's April 20, 1999 - Hi Jana, The words, "There is no quality to life right now" really struck me in your post. That is really the bottom line and while Coreg is great for CHFers, it is not worth feeling miserable over. I can't take the stuff because of asthma and the depression that sets in. I've tried several different beta-blockers. So, I am at least happy that I can take Ace inhibitors. Talk to your doctor and let us know how you are doing. Bestest, Lee. LeeRoush@aol.com


Jana B, April 21, 1999 - Hi, I stopped all my meds today. I felt so good! Then I decided I was being stupid, so I took all my night time drugs including Coreg but I only took 6.25mg. Now I am wondering what I am going to tell the doctors at UCLA. One of the criteria to get a transplant is you must be able to stick to the medicine regiment. It's not that I can't stick to it, I can. I just want a quality to my life and these meds are affecting me so negatively. I told my cousin today that God is healing me and these meds are killing me. I know that some of you don't believe that God can heal me as you mentioned in your e-mails to me but I believe He can and I am not losing my faith in Him. JByers4u@aol.com


Jon's April 21 reply to Jana B's April 21, 1999 - Hi Jana, I'm not a disbeliever, by a long shot. :-) I do not question your faith, but for what it's worth, here are my thoughts. Are you following God's schedule for your life, or yours? It sounds to me like you acted on a whim, and God doesn't indulge in whims. That's why we can always trust Him. The Holy Spirit leads those who wear the new man in many ways, but we always know when we are being led, and must beware not to lead ourselves - a sure recipe for disaster. <g> Learn all that you can about God's healing of men. That includes, of course, a lot of prayer and going into the Bible in a way most never do - studying every single mention of healing in the Bible, memorizing them, and pondering the relationship those men and women had with the Lord, the reasons they were healed - or not healed. Define your relationship with God and healing may well be in your future. Leave that relationship vague and it's not likely. Our God is not confined to what people think He can or cannot do, so disregard anyone who says He cannot do this or that. The only things He cannot do are those that are contrary to His nature - lying, for instance. Still, many requests for healing have been refused, including that of Paul - 3 times. Learning and carrying out God's will for our life is the most important thing, whether it includes the deeds we desire or not.
     About those medicine regimens; I don't think it's a matter of whether you can follow the meds regimen. It's a matter of whether or not you will. It's a very good question - not everyone will. You need to very closely examine your expectations of post-transplant quality of life, Jana. If you have a certain expectation and you will not comply with doctor's orders if your life's quality falls below that, maybe you should reconsider transplant. The meds you are on now often lower our energy level and have other side effects but without them, your life may be "better" for awhile but it will certainly be briefer. That's your call to make. It's time to put away childish things and stay the course, whichever course you decide to follow. Know that you are not alone. It's a choice we all have to make. Jon.


Ginger, April 21, 1999 - Hiya's, I want to jump in here for a minute on the subject of anti-depressants. I just got put on Wellbutrin yesterday. I'm supposed to start it this morning. Here I sit, scared to take it because I have no idea what it will make me feel like when mixed with our other meds. I know the doctor said it was ok, blah, blah blah. The bottom line is new drugs I have to take scare me, no matter what they are anymore. I was feeling sort of alone in my depression but I can see from the posts that I am far from it. Bobby, I like your idea of fighting it by staying busy. I hope it works for you. It did for me for about a month. Then last week, I caved in to it and moped for about a week till I got tired of being miserable. We will see how the Wellbutrin goes. Stay well, ya'll, and cya's at chat. Yep, depressed or not , chat goes on. <g> Hugs, Ginger. mystery@laker.net


Pat L's April 21 reply to Jana B's April 20, 1999 - Hi Jana, I have been experiencing a similar problem with my stomach. For me, this does not occur with breakfast but does occur as soon as I start lunch or a morning snack. It feels like a bloating sensation. Whatever I eat or drink feels like it just stays there for the rest of the day. I have reported this to my former cardiologist. I will see my new cardiologist tomorrow and mention it to him. I had not associated it with Coreg. I am on 25mg twice a day. Pat. patlat@yahoo.com


El R, April 21, 1999 - Hi, I met a new doctor here in Las Vegas, and am pleased to say he was very nice. He is already working with my doctor in Los Angeles and they are mutually managing several patients awaiting transplants. This works out great for me, as I can let my doctor in Los Angeles manage the cardiomyopathy and the doctor here manage the arrhythmia stuff. The fact that they will work together means everything to me. I am going to have the EP study done, hopefully next week, and then most likely will receive an implanted defibrillator the following day. I talked with my LA doctor's nurse about this and she told me she wished all their CHF patients could have defibrillators. She explained that they don't ussually lose their cardiomyopathy patients as a result of their hearts failing. She says they can treat that and if they cannot, then they can get a transplant. The patients they do lose, they lose because of arrythmias, where it happens in their sleep or they are unable to get help quickly enough to be rescusitated. She advised me that the defibrillator should be looked at as an insurance policy. This makes me feel very secure in the new doctor's plan of treatment.
     This new doctor was involved in getting the legislature changed here to allow for all the hotels and casinos to have defibrillators on the premises. I like his way of thinking. The big plus is that he didn't try to defend or excuse the botched heart biopsy I had. He explained that the reason I felt such pain was due to poor technique and the fact that they were taking too big of bites of the heart muscle. This is a real first. He discussed this without asking who did it, and he believed me. When I told him that the muscle had been perforated and that I bled into the pericardium, he said, "Yes, I know, that is why it hurt so badly." He knew as soon as I described the situation what had gone wrong and that it was wrong. What a big change from the last guy I saw here who told me they must have forgotten about the problems when they dictated it, rather than believing and admitting they had goofed up. The fact that this new doctor was straight with me about this made him trustworthy for me. El R.


Jon's April 21 reply to El R's April 21, 1999 - Hi El, Congratulations on finding an upfront doc - ain't it sweet? <g> For those with potentially lethal arrhythmia, an ICD is an invaluable insurance policy and should be received ASAP. Just to avoid a rash of CHFers asking me if they should have an ICD because of their heart failure though, I must say that the nurse who spoke to you was wrong. Recent studies show that ICDs have little or no benefit for CHFers without current arrhythmia so not all CHFers should get an ICD. (I think I sent out a couple of articles on the mailing list about this or put them on the ICDs & More page) Jon.


Louise N's April 21 reply to Renee P's April 20, 1999 - Hi Renee, I have been on antidepressants for quite awhile. While there can be some side effects, if you really need them, they can be the beginning of light at the end of the tunnel. Every drug has some side effects that affect everyone differently but because someone else has that side effect does not make the drug bad. It is only that person's experience with that particular drug. There are now dozens of antidepressants on the market which have different side effect profiles. One can surely be found to be effective for you. I have worked with doctors and with a pharmaceutical company for the last 20 years and the misconceptions about some drugs is mindbogglingly ignorant. Depression is not a character defect.
     Clinical depression has now been proven to be a chemical imbalance that can be triggered by life events such as a heart condition and they need to be treated as the medical condition they are. They are not happy pills, they will not change your personality, but they do help people to cope, sometimes with an optimism that was not there before and if there is anything we CHFer's need is hope that we will have a future.
     Another piece of advice is you wouldn't go to a foot doctor for your heart, so by the same token, an opinion by a psychiatrist or psychopharmacologist is preferable to a non-specialist because something as simple as the time of day you take a medication can mean the difference if you have side effects or not. Most cardiologists, internists and family doctors are not aware of the precision these drugs need, to be prescribed properly. Good luck. Louise N, age 53 and EF 10. confuzed45@worldnet.att.net


Louise N's April 21 reply to Jana B's April 20, 1999 - Hi, I had the same stomach problems that you and Jon had. I helped alleviate some of that with papaya enzyme. The highest dose of Coreg I can tolerate is 12.5mg twice a day but the difference it has made in my quality of life allows me to tolerate some side effects. It sometimes takes a while to adjust to a new dose but 50mg a day just might be too much for you. confuzed45@worldnet.att.net


Louise N's April 21 reply to Bob's April 20, 1999 - Hi Bob, Welcome to Jon's Place! This is the place to be to get information on our condition from the people who live it. In addition to the forums, Jon has compiled over 200 pages and links to information you should know about CHF. On the top of this page, click on Site Index. You'll find information about CHF medications, medical procedures, tests and the reason they do them, what diet and exercise programs should be, information on the newest experimental drugs and procedures and how we try to cope with CHF. confuzed45@worldnet.att.net


Brenda H, April 21, 1999 - Hi, I've been missing you guys! My computer kept freezing up on me. It was so frustrating, but I'm glad to be back. Welcome to all the newcomers. We love questions. I'm doing pretty well. My next echo is in one month and I can't wait! Lori, a big congratulations! That is so neat. I'm so happy for you. Brenda H, age 31, EF 25. Hansonfoxi@aol.com


Lori P, April 21, 1999 - Hi (I was Lori W but am now Lori P), I have a new e-mail address: lpearson@cdsinet.net


Jamie S' April 21 reply to Renee P's April 20, 1999 - Hi, I was on Zoloft for a few months and starting out, it seemed to work. It could have been my power of suggestion but after a few months it didn't seem to be working so we increased it. That just made me anxious. So I decided to stop taking it because I saw no difference between who I was before and who I was still. So I started working with my PCP and he has been excellent. I have been on 20mg Paxil at night and even thought I never thought I had sleep problems but it has helped my sleep. I forget who said it affected his libido but select serotonin affecting drugs can decrease libido. Hitting a home run isn't a problem, it's getting to the game that is affected. Renee, the Dr. Jekyl and Mr Hyde thing is what I have been going through but I have since started on ortho-tricycline birth control pills and I am even-keeled again. See if you can pick up on a cycle of emotions before your cycle. If you'd like to e-mail, me feel free. Jamie. JamieDan@prodigy.net


John Len's April 21 reply to John ?'s April 20, 1999 - Hi John, Without going to my med books, doesn't a high protein diet produce a lot of ketones, which in itself can be less than good for you? John L. a_lenny6@hotmail.com


Jennifer ?, April 21, 1999 - Hello, I just discovered this place (actually, you discovered me) and I must say wow! I didn't know there were so many of us! I've been living with DCM for just over 2 years now. My meds are Accupril and metoprolol. I just started with the metoprolol due to palpitations and extra beats. It seems to make me very tired. My EF is 40-45%. I'm impressed at how knowledgable you all are. I must admit I haven't researched my condition that much and have put my trust in my cardiologist. I have some questions. What are PVCs? Because I have cardiomyopathy, does that mean I have CHF? Is there any link between cardiomyopathy and hypoglycemia? I'd also like to know how you found me. I got a newsletter from Heartbeats but I don't know how they got my e-mail. I hope to join you in the chat room soon! Jen. Jeniko@sprint.ca


Marion G's April 21 reply to Bobby F's April 21, 1999 - Hi Bobby, Being impotent is a common side effect of some antidepressants. I am female but was on Prozac for a while. My sex drive disappeared altogether. I couldn't have cared less if I never had sex again. When we did have sex, I enjoyed it but I sure wasn't the initiator. My poor husband was going for sainthood at the time. I finally went to the doctor and he switched my medication to Zoloft. What a difference. The old me is back. Before I was diagnosed with CHF, sex had become difficult, mostly because I was out of breath all the time and I couldn't lay down. Then after diagnosis I had a problem with orgasm. I asked my doctor if meds could affect this and he said he didn't think so. So I kind of tried to not worry, which would make it worse. Now everything is back to normal. Depression is a pretty serious illness in itself and you might mention the sexual side effects to your doctor and request a change of meds.
     I have been feeling rather poorly lately and finally went to the cardiologist. He did another echo and the results were the same as the last one. So now my Lasix is up to 160mg twice a day and Vasotec to 20mg twice a day, along with all the others. I still get short of breath and like many others with IDCM and CHF, I don't understand how I can have echos that don't change and generally feel worse. Does anyone have any answers for this? Thanks, Marion. MGodzik@aol.com


Roger C's April 21 reply to Jana B's April 21, 1999 - Hi Jana, I just wanted to relay a personal experience with stopping all of my meds a while back. I ended up in the hospital with CHF. This was the first time I had been told I was in congestive heart failure. I am one of the people who can't take Coreg because it makes my pulse and blood pressure do some awful strange things. Maybe this is your problem. Talk to your doctor about it. I haven't posted here in a while but I try to read everything posted. Be well! Roger C. rdconnel@bellsouth.net


Robin W's April 21 reply to Jana B's April 21, 1999 - Hi Jana, I read your post about stopping your meds with much sympathy. It is hard for me to understand some of the side effects many of you suffer because I have been lucky enough to be very drug tolerant. Nothing really bothers me except, and I know this will sound crazy, 800mg prescription tablets of Motrin. I can take 4 Advil with no problem, but the prescription sets my stomach off! Anyway, back on topic, please follow your regimen. If your side effects are seriously affecting your quality of life, tell your doctor and make him listen. Please don't jeopardize your chances for a life saving transplant. We want to keep you around! Robin W, EF 8%, age 31. jwilson@nb.com


Robin W's April 21 reply to Sara's April 16, 1999 - Hi Sara, I just wanted to let you know I have been on narcotics for pain since 1993. My pelvic bone was damaged, like my hips, from chemotherapy. My hips were replaced, my pelvic bone of course, can't be. They have not caused any problems with my CHF that I am aware of. If you would like to e-mail me about specific drugs and doses, feel free. Robin W, EF 8%, age 31. jwilson@nb.com


Robin W, April 21, 1999 - Hi, I just wanted to let everyone know that my SSD problem has been resolved. When I spoke with them, they said a Medicare Part A card had been mailed to me on 4/14. I asked if it was possible that along with that card was the correction for Part B. The answer of course, was no. Well, the correction was included in that correspondence and a deposit made to my bank. I found this out when I went to the bank to get a record of my deposits. Also, next week I will start to use another e-mail address when I am in the hospital. I will send it along as soon as I get it. To everyone I correspond with, I am not ignoring you, just been busy. I'm sure you'll be hearing from me Way Too Much starting 4/28! Robin W, EF 8%, age 31. jwilson@nb.com


Milo K, April 22, 1999 - Hi, Merck's Manual, page 20 states: "Feeling sad when contemplating the end of life is a natural response, but this sadness is not depression." The above statement from Mercks proves I am in error. I made a mistake and got sadness and depression mixed up.
     I read someplace of a new drug passed by the FDA that is similar to Cordarone. Does anyone know the name of it? Milo. via paulmcferrin@worldnet.att.net
 
Jon's Note: Pacerone, maybe?


Paul M's April 22 reply to John ?'s April 20, 1999 - Hi John, I've always been told by hospital dieticians that diabetics should limit calories from protiens to 15% of their total caloric intake. The reason for this is that it puts less load on your kidneys and long term diabetics have kidney problems later in life. Your testimony is amazing! I'm just surprised that your doctor said it was okay. Good luck with your health. paulmcferrin@worldnet.att.net


Jana B's April 22 reply to Jon's April 21, 1999 - Hi, I have received real confirmation of a healing from God. I know a lot of you will think I am nuts to say that but it is true and too long to go into here on this forum. You are absolutely right in me doing things on a whim rather than waiting on God, or the meds to level out. I am taking the Coreg but at lower doses. You have to understand I have never seen the same cardiologist twice! I have an HMO and they keep sending me from one to another. I can't pick who or how often I want to see a cardiologist. I have to wait on a referral for each appointment. I hate that! I am hoping when I go to UCLA, they will take over my care. I know from reading my Insurance manual that they can do that and I am going to ask for it. I have thought long and hard about whether or not I even want a transplant and I am not so sure I do. I haven't seen enough information on the after-effects of transplant to make an educated decision yet. I prefer quality to quantity in my life. I was sleeping 16 hours a day most days, when on high dose of Coreg. My legs were weak, my hands were weak and then the stomach problem started, not to mention acne, which could all be related to something else. All the symptoms you have all mentioned since my post on stomach problems were exactly as I was having them.
     I never asked God for a healing. I asked Him to have His will in my life. He is who confirmed a healing to me and even what I would do after the healing. I know I sound like I've gone off the deep end but if what He has revealed to me comes to pass, a lot of people are going to be surprised and witnessed to. Right now, my faith in God is all I have, regarding my heart. I respect everyone's views, just as you are doing mine but I think some people will be surprised. God has a plan for me and like they say He's not done with me yet. Jbyers4u@aol.com


Jon's April 22 reply to Jana B's April 21, 1999 - Hi Jana, First, by respect, I meant I was careful not to imply that you never read the Bible, since some Christians take offense at that (especially if they don't <g>). God causes miracles every day. I know this for a fact. The problem is that instead of just looking at and listening to what He does, we often rationalize and interpret what He tells us and what He shows us. We don't really listen (I include myself). Now, please don't get upset, but look at what you wrote. You said "if what He has revealed to me comes to pass...," God's word always does what he sets it out to do, without fail. Isaiah 55:11, "So shall my word be that goeth forth out of my mouth: it shall not return unto me void, but it shall accomplish that which I please, and it shall prosper in the thing whereto I sent it." If God revealed it, it will happen. Just be sure "it" is what you think it is. Strengthen your faith, so that God may indeed work His will in and through you. Feel free to e-mail me anytime. :-). Jon.


Renee M, April 22, 1999 - Hi to all, I hope everyone is doing well. I am interested to see if anyone with normal blood sugars took Coreg and became diabetic. I never had a problem with my sugar levels prior to Coreg. I take 25mg twice a day. Diabetes runs in my family and my doctors don't think it's the Coreg. I had many of the symptoms of diabetes after about 6 months on Coreg. I am currently being treated with diet and oral medication and my sugars are under control. It may be coincidence that I developed diabetes at about the same age as my mother (age 47), but I still wonder about the Coreg. I can't discontinue the Coreg because this is the first drug in 5 years to get my blood pressure and heart rate under control. I guess the bottom line is to keep the sugars under control, no matter what the cause. Thanks, Renee M. Auntonay@aol.com


El R, April 22, 1999 - Hi, I am still waiting for word from the doctor's office. This procedure is being complicated by the fact that I had a TRAM free flap (Trans Rectus Abdominal Muscle flap) in 1992, where a big hunk of my abdomen was harvested and used to reconstruct breasts, sort of <g>, complete with a new blood supply and lots of microvascular work. This means the implanting of the defibrillator has to be coordinated with a plastic surgeon to help navigate through my chest since things are not where they used to be. <lol> The doctor is concerned with things like where the pectoral muscles are now, where the new blood supply is and where it is hooked up. He is concerned , thankfully, with trying to maintain aesthetically what they have already done.
     Can anyone tell me where the incision is normally made? Is the implanted device visually obvious, once in place? Is it comfortable? Can you feel it there? To make it just a bit more complicated, I have requested my favorite anesthesiologist. Last time I "went under" with him, I awoke as if from a nap, with no nausea, no struggling through the fog. I think he is great. He also reads to me while I am under. I type up what I want him to read and I strongly believe this helps me. Generally it is stuff like, "you will wake very gently, with no nausea, you will feel little pain, you will heal very quickly and regain your strength as you heal." I started this at the time I had the flap, as it was a 12 hour surgery and I had a history of reacting badly to anesthesia. That time I had a lengthy bit to be read, given the long surgery time frame, complete with imagery about floating in the water with dolphins. Amazingly, I awoke after 12 hours or so very easily and with no nausea. I have requested being read to ever since, and sad to say, I have utilized it many times but hey, it works for me. The doctor likes to think it is the drugs he uses and I think it is the reading but he finally aggreed that it could be a combination of both. Now some other anesthesia guys here are starting to talk to their patients as they go under and coming back up. Does anyone else have any experience with this? El.


Barbara R, April 22, 1999 - Hi, I found a new book in the library where I work. The name of the book is "What to Eat if You have Heart Disease" (Nutritional Therapy for the Prevention and Treatment of Cardiovascular Disease) by Contemporary Books, 1998. The authors are Maureen Keane and Daniella Chace. This book has a chart on some hidden sources of sodium and a chart on ingredients that contain sodium. The cost is $l4.95. Some of you might find this book interesting and helpful. Barbara.


Cindy's April 22 reply to Ginger's April 21, 1999 - Hi Ginger, and those of you who have gone through, or have questions about using an antidepressant. Ginger, I just started Wellbutrin, after not doing well on Celexa and Serzone. Serzone had me slurring my words, walking into walls and I couldn't hold a thought for more than 30 seconds. Celexa had no effect at all in relief of my depression. I am optimistic about Wellbutrin, since so far there have been no side effects. It seems that as with our other meds, sometimes fine-tuning must be done before the right one is found. On another topic, my heart failure doc, after listening to my chest, said I have no heart failure sounds and then ordered up a Vo2 stress test. I was too dumbfounded to ask her what she meant by "heart failure sounds." Can anyone clue me in? Thanks, and take care, Cindy. cleighmc@aol.com


Cindy ?, April 22, 1999 - Hi all, I have some info about a trial fro CHFers in the Chicago area that I'd like to pass along. It involves testing amiodarone vs an internal defibrillator. I believe that people with arrhythmia are the folks who might be interested. I heard about this through a cardiologist who mistakenly thought I had arrhythmia. He noted that the internal defibrillators were of no cost to the participants. Contact Dr. Dave Wilbur at (773) 702-5820 for more info. Best, Cindy. cleighmc@aol.com


Louise N's April 22 reply to Jennifer ?'s April 21, 1999 - Hi Jennifer, Welcome to Jon's Place. I don't know how you found us, but the important thing is that you did. I'm sure someone will let you know how that happened. In addition to the forums, Jon has compiled over 200 pages and links to information you should know about CHF. Knowledge is power. On the top of this page, click on Site Index. You'll find information about CHF medications, medical procedures, tests and the reason they do them, what diet and exercise programs should be, information on the newest experimental drugs and procedures, and how we try to cope with CHF and DCM. confuzed45@worldnet.att.net


Will W's April 22 reply to Jana B's April 21, 1999 - Hi, Jana, I read your post and it reminded me of the story they told me after my transplant. One of the receipients after awhile decided that he felt so great with his new heart that he decided he didn't need the medications. Besides, they were expensive, so he stopped taking them. He had a farm and continued doing what he wanted to do. Everything seemed to be going great. One day he didn't come in from the field for dinner. When they found him, he had a massive rejection and that was that. Even if you feel that God will heal you, remember you have to do your part, too. Will. heart266@tco.net


Julie Kendall, April 22, 1999 - Hi, I hope I can find the words right now to express my feelings. God does heal! Right now, I claim total healing, yet I'm still struggling with medications and an exhausted heart. About one year into my heart failure, I was able to have a sweet Christian lady and her husband pray with me for my healing. I had such a peace come over me I knew that second that it was a done deal. I started to search the scriptures, like Jon mentioned, and to my amazement, over much time (it's an ongoing process) God began to heal me. The amazing part is that my healing is a far greater healing, a spiritual healing. I began to remember past wrongs with people I needed to make right, things I needed to change about myself, hurts I needed to forgive, on and on. The list doesn't seem to want to end. Thank God he loved me enough to give me this time. Maybe when I get all these things ironed out, I will have that fully functioning heart back again but I have needed this time to spiritual heal. I love him so much! His ways are perfect. So, hang in there, our God is sooo big! jkendall@gorge.net


Virginia R's April 22 reply to Bobby F's April 21, 1999 - Hi Bobby, Paxil does create performance problems in some persons. However, there is a medication that counteracts the effects. The worst part is asking the doctor for it. The medication is taken about 30 minutes before you plan to do anything. Sure, it takes some of the spontanaeity out but the tenderness the two of you can share during this time period can be truly wonderful. Some people find that taking the pill 15 minutes before is more effective. Paxil is usually a good medication for depression with few side effects. At least there is an anecdote for "the side effect." Also, some people's bodies overcome the side effect after prolonged use of Paxil. I wish you well. giniroberts@hotmail.com


Connie D, April 22, 1999 - Hi Jon and whoever reads this out there, Today I was diagnosed with heart failure. It sounded pretty scary when my doctor said that but I have been in and out of CCU in a Denver hospital for almost 2 years, beginning with unnecessary gall bladder surgery. had to grin when I read your story, Jon. I have spent the afternoon reading this site and am thankful the good Lord led me here. I'm a 47 year old minister's wife, mother of 3. I entered the realm of grandmotherhood 15 months ago and it is incredible! Anyway, this dear site has already perked me up and given me lots of info (and questions.) I have a question. My left foot, ankle and leg are quite swollen but not my right ones. My husband thinks if I really had CHF, both legs would be swollen. Does anybody have any thoughts or experience with this? Well, I appreciate your time. Love, Connie D. grandmaconnie@hotmail.com


Sarah F's April 22 reply to John ?'s April 20, 1999 - Hi, I struggled for a year after starting on Coreg to get my sugar back to less that 150 daily. Finally, with the threat of insulin, I was referred to a dietician for instruction to control my sugar better through diet. She put me on a high protein, low carbohydrate diet which was designed for my problem. Since then I have been singing the praises of the high protein, low carb diet. My sugar is below 135 daily and I have lost 12 pounds since February 23,1999.
     The difference is that I am on a very conservative diet. It limits protein to 3oz lean meat or cheese at lunch and a palm sized serving of meat in the evening. It keeps carbohydrates to 180 per day. I am amazed at how well it works. It is kind of a low fat and carbohydrate diet. One tip I received was to use regular salad dressings because the fat free ones load up on spices, carbohydrates and sodium to replace the fat. It is basically a diebetic exchange diet with some alterations. She said that the meat is limited enough not to worry about ketones. I really miss my fast and tasty pasta meals but it's worth it. Good luck, John. Sarah. sajn43@prodigy.net


Renee M, April 22, 1999 - Hi, I have read the posts from many of you about antidepressants. I am taking Zoloft, too, and it's working very well for me. I had a very bad attitude about antidepressants until I read the book, "When Words Are Not Enough," by Valerie Raskin, MD. Not only does she talk about antidepressants and their specific uses but there is a section in the book specifically about individual medications, their uses and side effects. They are also grouped by type. If one med is working but causing side effects, sometimes another in the same group or a different dose will work. I did not realize how many different antidepressants there were! If you really need an antidepressant, don't be afraid to take one. It can make a world of difference in your life! Informing ourselves is the only way to make sure we get the best treatment for our illnesses. Good wishes to everyone. Renee M. Auntonay@aol.com


Milo K, April 22, 1999 - Hi, Sending snail mail is not as fast as e-mail, so I will not be able to answer posts. I'll write things I consider important to the forum. If a post is important to me and has no time element, I will reply. Years ago, I began to experience pain in my testicles when I took my morning walk. Because the pain increased, I went to my PCP, who in turn referred me to a urologist. After many tests, nothing seemed wrong. After much thought, I deduced that I had a psychosomatic illness. A part of me wanted me to walk and another part of me said no. What to do? Take a pain pill and cover up the problem, only to have another psychosomatic problem in later life? I decided on no meds and to deal with the problem head on. Which part of me will win? I walked no matter how serious the pain got. After a while the pain became less intense and was gone. I won over my problem.
     The mind is capable of many things. If we suffer a very tramatic experience, we can shut it out by forgeting everything, even who we are. The brain has ways of saving us from mental anguish. If we don't want to accept something, change the subject. That's an easy one. A doctor may tell a person that he will never walk again, due to an injury. The person says, "The heck I won't" and he does.
     How does a phobia protect us from mental anguish? Let's take agoraphobia; If I find life too difficult, I can develop a phobia that restricts life, perhaps to keep me in the confines of my home. As soon as I try to leave the house, I am struck with panic. Agoraphobia can protect me from life beyond my control and although not normal, it may be a good thing. I think all phobias are protective and we have them for as long as we need them.
     Now, back to the urologist. The nurse informs me that the doctor wants to do a massage of my prostate and I should take all my clothes off except shoes and socks. Now, I have had digital rectal exams for cancer and I had a prostate massage from my primary - not bad. The urologist had quite a different idea. In he walks, rubber gloves, KY jelly, and all. Next thing I know, I am told to bend over the exam table and he proceeded. It did not take me long to know what his idea of a massage was. I haven't had so much pain in a long time. It seems that my prostate was plugged. Well, it isn't plugged anymore. He then informed me I did not have an infection, so my prostatitis requires frequent ejaculation. Well now, that didn't seem too bad. I hope my wife survives the ordeal. This is for a healthy prostate. Such is life. Milo. via paulmcferrin@worldnet.att.net


Milo K's April 22 reply to Dina Rice's March 25, 1999 - Hi, I did not get the defibrillator. My other health plan said meds first, so I had to go to the physiology lab. Of 6 or 7 medications available, only 2 were available to me because of my other ailments. He did a cath but instead of a dye being injected, the medications were. The first one killed me. I flat-lined. This guy could speed up or slow down my heart. He created a tachycardia and then released the med. That killed me. Next time he used Cordarone and I did not flat-line but I could not handle the side effects. I am currently on nothing for ventricular tachycardia. It would not a bad way to go. I'll be 74 on May 4th. I am pleased you liked the picture of us, and thanks for the compliment, but I have to be careful. She can be a tiger, and now and then I have to run for cover.
     On a different note, intermittent claudication is a diabetic complication that causes problems walking because of damaged blood vessels and nerves in the calves of the leg. After a short walk, the calf muscle becomes very tired and is near cramp. The person stops until the cramp threat is gone and then walking is resumed. A person with a low EF can experience the same thing due to lack of blood to the calf muscle.
     My second health plan does not cover MUSE so I called the Medicare people and found it to be refundable, but I expect limitations. The cost is $106 for 6 applications. I am waiting for a form so I can enclose the prescription and receipt on just what is covered. I will pass the info along when I receive it. The same medication for MUSE can be injected by needle if desired. Milo. via paulmcferrin@worldnet.att.net


Hope M's April 22 reply to Renee M's April 22, 1999 - Hi Renee, I tried Coreg for a few months. I can't put my finger on the literature for the doctor from the pharmaceutical company that accompanies the Coreg samples, but I'm certain I recall that for people with diabetes, Coreg can cause changes in insulin requirements. I bet you can find that same Coreg information on the Internet. You said you didn't start out with diabetes, but maybe it was lurking in the background and Coreg was enough to make it occur in you. Hope. mcneils@ibm.net
 
Jon's Note: Prescribing info is available through my Coreg page. Use the links beside the page title


Hope M, April 23, 1999 - Hi, Today I got the results of a MUGA I had done last month. My EF was 26%, down from the 40% the cardiologist had approximated from the echo I had last fall. I feel discouraged, but it does explain my lack of energy. A little history - I had my mitral valve replaced in 1994 and my left ventricle is enlarged and dysfunctional. Hope. mcneils@ibm.net


Jon's April 23 reply to Cindy's April 22, 1999 - Hi Cindy, Usually we CHFers have an S3 and an S4 (see the FAQ). These are "extra" heart sounds that come from a heart not beating in a completely healthy fashion, although children can have an S3 with a healthy heart. There is controversy over what causes these sounds and no one knows for sure. I gotta tell you, my cardiologist places a lot of faith in his stethescope and I'm not sure what all else they hear through that thing. <g> Jon.


Marvin B, April 23, 1999 - Hi, I have a question. Jon's mailing on 4-8 had an article on ACE inhibitors and the RAS, which stated one of the rare side effects was loss of taste. I am taking 20mg Accupril along with all of my other medications and have lost obout 90% of my taste. Has anyone else had this problem? For a person who used to love to cook and eat, and now I could care less about food. Everything tastes like mush or shoe leather. I can still taste some sweetness and very sour foodstuff. I read all the posts but seldom write. Keep the faith. Marvin B. bigbo@3lefties.com


Jana B's April 23 reply to Jon's April 22, 1999 - Hi, Just one more thing and I promise I won't mention this again! <g> First of all, Jon, I understand totally what you are saying and take no offense to it. This is how I learn! I did however, go to my Bible today and look up healing, something I hadn't done before. Yes, I do read my bible. <g> Julie talked of spirtual healing. God showed me right in the beginning that I had some real spiritual issues I needed to take care of. I have overcome those and am working on others. As for me saying if God heals me, I caught that too, and as I was writing it, didn't want to use that word. The if was for lack of reference. Make no mistake there is no doubt in my mind He is going to heal me. I also want to say thank you for editing and correcting the spelling errors of ours when we post here, but it is making me lazy! <g> I make a mistake and say to myself, "Oh, Jon'll fix it!" Thanks everyone, for the encouragement here and in personal e-mail. I have learned so much here medically and spiritually. Jana. Jbyers4u@aol.com


Jon's April 23 reply to Jana B's April 23, 1999 - Hi Jana, "When" would be a good word to use instead of "if." Text-only communication is very hard to do effectively and one must choose words very carefully to convey the mesage you want conveyed. Otherwise, the message person B reads may not be the message person A thinks he sent.
     One of several prime reasons I edit posts, including spelling and grammar, is that I have to stay interested. I am not the sort of person to read message boards, ever. That may sound strange coming from the creator of a set of message boards, but it is completely true. If I don't give myself a reason to do so, I won't read anyone's messages, none at all, which makes it kind of tough both to put them into HTML and to answer them. <g> That was one of only 2 reasons I had for editing posts to start with. If you get too lazy, I'll send your posts back for more polishing! Jon.


John B's April 24 reply to John Len's April 21, 1999 - Hi John, My source of the protein diet are The Protein Power diet and Dr. Barry Sanders, the Zone Diet. In the tapes enclosed with the Protein Power diet, Myths and Misinformation about Protein adaquate diets, they claim ketones are not at all a problem. They explain why but I don't remember their explanation and I already gave away my protein diet stuff to another friend who is diabetic and wants to try this diet. What surprised me was the cholesterol drop, with all the meat cheese and eggs I fully expected cholesterol to be a big problem but so far it has improved. I am now down about 12 pounds on this diet and my diabetes is a very stable 70 to 100 on half the glucophage and glyburide I was taking prior to going on the diet. jbott4015@aol.com


El R, April 24, 1999 - Hi, This is not a big deal at all but I wondered if others have had similar experiences. The other day I had a neighbor, who hasn't a clue what is wrong with my heart and only knows I am dealing with some stuff, tell me that all I needed to do was to get myself to a holistic doctor and I wouldn't ever need a new heart; I could be cured if I just changed my diet. She had a brother-in-law that "needed a new heart and he did this, and now he is just fine and doesn't need a new heart, blah, blah, blah." She did not know why he needed a heart or anything about what his problem was. "He just had a bad heart and now it is cured." It made me really angry and I didn't know how to respond. I just said I had a lot of faith in my medical doctor and she said, "Well, they only know about medical stuff." Any suggestions, other than hiding when I see her outside? <G>


Christy M's April 24 reply to El R's April 22, 1999 - Hi, Regarding ICD placement: I had an ICD implanted March 22, 1999. My doctor wanted to implant it in my non-dominant front shoulder, in my case, my left side. It sits just below the collarbone and the incision is about 2 to 2 1/2 inches in length. Since my implant is so recent, it is visible as a small lump to the eye, if I were ever to don a bikini, swimsuit or other scanty clothes! Some of that is residual swelling that I'm told will go away. Yes, I can feel the ICD as I move around. Initially I was very aware of it but that sensation is decreasing over time. My ICD is my greatest gift of life. It's my "Emergency Room in my Chest." I'm delighted that I have it and take great comfort in the fact that it's there to do it's job when it's needed. I hope that you can also take comfort from it after the implant. Feel free to e-mail me if you have further questions. breeZip@hotmail.com


Leland Y, April 24, 1999 - Greetings, March 10 was a dark day, darker still by March 12. That was the day I was told about my CHF. I have been home from the hospital now for all of 6 weeks and it's not so bad after all, since I am being treated like a king. I call it my vacation. I thank all my friends, neighbors and relatives for their offers of help and diet foods and recipes. It's very reassuring there are so many friends to lean on. My daughters, Tracy and Laureen, and their families come from San Diego on the weekends. Lily, my wife, has taken a 12 week leave of absence from work. My son Mike, brings fresh strawberries every weekend. Karen and her son JP from Reno, and Marty, my son, spent 3 weeks here to help out. What I really need is someone to come here to help us eat all the food!
     I have cereal and fruits for breakfast, with an occasional piece of dry toast thrown in for good measure. I have more fruits for lunch, with lots of salads. So far, Lily has made 2 large pots of jook (rice porridge). My sister Lucy made a big pot of Chinese soup, with foo jok (soy product), bok gwo, hung dao (exotic Chinese nuts) and black mushrooms (Shiitake). Bok choy with noodles are quite frequent without soy sauce. Dinner consists of less than 2oz of meat, usually broiled fish and white rice and very little beef or pork, even though I am allowed to eat these delicacies. So far, my weight is holding steady at 145lbs with the home scale, but 152lbs at the doctor's office. So, everything is in control.
     I am sitting up more now, trying to catch up on e-mail. I get to walk for 5 minutes 3 times a day. I have been reading a lot lately, since all the relatives invariably bring something (bless their hearts). My latest novel is Tom Clancy's Balance of Power. The biggest amout of material to read, so far, is from Jon's The Beat Goes On. Right now, I can't wait to go outside and mulch my roses. My son Martin, is a physiologist, specializing in cardiac rehab. He has written up a whole program for me to follow. Six weeks have passed and I have to say that God has really been good to me. The love that I have described above did not just happened by chance.
     My meds are: 40mg furosemide twice a day, 40mg lisinopril, 90meq KCl 3 times a day, 6 SlowMag, 0.125mg digoxin every day with 0.125mg more on Mpnmday, Wednesday and Friday, 1.25mg warfarin, 1mg lorazepam at bedtime, 25mg amitriptyline at bedtime. Luv and salutations to all. Leland. LLYEE@prodigy.net


Jan P, April 24, 1999 - Hello everyone, I have an ACE inhibitor question. It has been mentioned that ACE inhibitors should be taken at larger doses for heart failure. What is considered a larger dose? What are the doses that some of you are on? I was on 5mg of Prinivil for 2 years. Now I am on 20mg. One of my doctors wanted me on 40mg a day. I am a little confused about this. After 2 years on 50mg of Coreg daily, I am now on 18.5mg and will probably go to 25mg daily. My EF went from 15% to 63% over the past 2 years but I did not have any quality of life and spent about half of each day laying down and had continual brain fog. Now the doctors (transplant team) would like to see if I can maintain my gains on less Coreg. I know it is taking a chance because their experience with people going off Coreg has been that they end up with an EF similar to what they started with. jan.peterson@usa.net


John Len's April 24 reply to Connie D's April 22, 1999 - Hi Connie D, I'm sorry to say, but I only have one ankle and foot swelling at this time. The other one is ok at this time. John. a_lenny6@hotmail.com


Chase's April 24 reply to El R's April 22, 1999 - Hello all, El, I would appreciate the name of your doctor in Las vegas and his hospital. I frequent there now and then. It's always good to know the better docs. To all others, this may be old hat but an article in the newspaper tells of using bone marrow from a donor to stop rejection. The effect was most dramatic in heart and lung transplants. As an example, rejection of new hearts occurred in 38% of cases when marrow also was transplanted, compared with 82% of cases without marrow. Chase G. cmgleg@aol.com


Jon, April 24, 1999 - Hello to all, I now require an e-mail address for posting to the message boards. If you want, you can get a free e-mail address from Yahoo, Geocities, Hotmail, Excite, USA Net and about 3,000 other places. Otherwise, you can use the filters in your e-mail client to avoid messages you don't want. From those on AOL, I need a complete e-mail address, including the aol.com at the end. Thank you. Jon.


Virginia R's April 24 reply to Milo K's April 22, 1999 - Hi Milo, You said that you flat-lined when the doctor gave you different medicines, immediately after your heart was catheterized? Somebody please answer this question for me. This sounds like what they would do with my father, who has left and right sided heart failure. How did they bring you back? As you were awake during the cath, were you aware of what was going on? Maybe this is what they call the Swan-Ganz treatment versus procedure? How common is this risk? I read here and at other sites as well, that this is debated for its use since some patients die within 30 days of the procedure. The argument being of course, that only the sickest of patients would be given this, so the results would be skewed. As Dad has a clot on the left side and failure as well in the right, I'm assuming that my Dad would now fit this category of "one of the sickest." Am I overreacting? giniroberts@hotmail.com


Jon's April 24 reply to Virginia P's April 24, 1999 - Hi, I am confused. Milo's experience sounds a lot like an EPS to me, where they try medications while they have you cathed to see what is the most effective treatment for your induced arrhythmia. EPS is done through a cath entering the groin.
     The use of the Swan-Ganz catheter as a standard diagnostic tool is indeed being questioned. The Swan-Ganz catheter is put into the large blood vessel in the neck and advanced into the right side of the heart to the pulmonary artery. It measures pulmonary pressure there. I confess that I don't quite follow you, though. Over-reacting to what? Jon.


Kim S, April 24, 1999 - Hi everyone, As some of you may remember, I was diagnosed with PPCM almost 9 months ago with an EF of 10-15%. A 6 month follow-up echo showed an EF of 40%. I had a 9 month follow-up echo the other day and I haven't improved any. I also had a Holter monitor done and am awaiting the results. I submitted a post awhile ago about SSD and I got many responses. I just heard today that I was denied. The letter angered me, saying, "You have experienced heart problems. However, following a recovery period, you should be able to work." My question is what do they consider recover and when? It also stated "although you are not able to do any of the work you have done during the past 15 years, there are other kinds of work you should be able to do." I am a registered nurse and my doctor has said that I may never be able to go back to the physical and emotional demands of nursing. Please someone give me some advice, I'm ready to pull my hair out over this. Thanks! Lalakimmie@aol.com


Jon's April 24 reply to Kim S' April 24, 1999 - Hi Kim, What you got was a standard form letter from Social Security. They don't tailor their reply to each case, they just pick the appropriate form letter, like most businesses do, so don't take it personally. <g> I had an EF of 13% when I got the same denial in the same words. This is a standard denial and if you want to pursue Disability as an option, you have to follow the standard course. Personally, I recommend getting an attorney at this point but you can file the next step yourself if you so choose. SSD is for people who cannot work at all and that applies to any job, not the one you made a career of. If I could reliably work 30 to 40+ hours a week making web sites, they would take away my Disability, even though I went to night school for 4 years and spent 8,000 hours in on the job training to learn my trade skills. Even though I can make simple web sites, I am totally unreliable from day to day, since some days I am completely incapable of doing anything. That is what you will have to get them to admit, that you cannot work at all, not that you cannot work as a nurse. Jon.


Ben B's April 24 reply to Hope M's April 22, 1999 - Hi, I just got the results of my last echo. On the good side, it showed my heart had shrunk significantly, going from severe 4-chamber dilation to mild 2-chamber dilation. However, it showed my EF to be 25%. My first echo, a year and a half ago, showed it to be 15%. Six months ago I had a cath showing 35%. This is just to say that since I still basically feel the same, I don't think it pays to worry that much about EF. I don't think they can measure it that accurately and it seems to change all the time. bdbrinkman@juno.com


Hope M's April 24 reply to Bobby F's April 21, 1999 - Hi, The medication Virginia is referring to is a prescription antihistamine. The brand name is Periactin and the generic name is cyproheptadine hydrochloride. It works for about 50% of the people who take it, who are experiencing sexual dysfunction with SSRIs. It is very inexpensive and if it works for you, it's great. It has, in addition to antihisimine properties, antiserotonin properties. As with any antihistamine, it may make you sleepy, so don't wait too long after taking it. Don't be embarrassed to ask your doctor for a prescription. Hope. mcneils@ibm.net


Sara ?, April 24, 1999 - Hi, I hope everyone is staying well. My e-mail address has changed but only in the numbers from sunny33904 to sunny20853. I lost everything leaving Florida and had a hard time getting back to this site and re-doing addresses. Well, at least it kept me busy from thinking of how bad I feel. I have a doctor's appointment on Monday, the 26, and I guess at that time they may put me on Coreg. I am having trouble with meds now. Amidorone seemed to be doing it's job at first but now I seem to be having arrhythmia again. Hang in there, all. Thanks for all the wonderful help and support. Sara. sunny20853@aol.com


Marion G, April 24, 1999 - Hi, After reading some of the bios, I noticed that some take CoQ10. I'm thinking of starting it. I figure it can't hurt but I'd like some feedback on the subject, like how much is the recommended dose, how long before a difference is felt and things like that. I work with a friend whose dad has been taking it for awhile. He had a triple bypass done and she said she thinks he looks better than he has in a long time. Anyway, any insight anyone can send my way will be appreciated. Mgodzik@aol.com


Robin W's April 24 reply to El R's April 22, 1999 - Hi, I like your idea of having the anesthesiologist read to you. It certainly can't hurt. As for the drug aspect, do you know what drug they used on you? Early on I learned of a drug that caused me to wake up wonderfully. I have no nausea, lightheadedness, nothing. The problem is I can never remember the name! It is an IV med that is white like milk. The anesthesia guys always tell me just to ask for milk of amnesia. Robin W, EF 8%, age 31. jwilson@nb.com
 
Jon's Note: Be sure the surgeon doesn't mind. Never upset the surgeon before the surgery!


Roger C's April 24 reply to Connie D's April 22, 1999 - Hi Connie D, I have noticed that my right leg shows the swelling and puffyness a lot sooner than my left. Be well! Roger C. rdconnel@bellsouth.net


Roger C's April 24 reply to Hope M's April 23, 1999 - Hi, It sounds like you have much of the same things wrong with your heart as I have with mine. Be well! Roger C. rdconnel@bellsouth.net


Sara ?'s April 24 reply to Milo K's April 22, 1999 - Hi Milo, Cordarone is the brand name for an anti-arrhythmic drug, pacerone is the generic name and amiodarone is the chemical name. I am on Cordarone and it has worked for a few weeks but something is happening and I am trying to figure it out but I think it's not doing the trick. Good luck. Sara. sunny20853@aol.com


Sara ?'s April 24 reply to Cindy's April 22, 1999 - Hi Cindy, I don't know how new Cordarone (amiodarone) for arrhythmia is, but my doc put me on it about 4 weeks ago and I don't think I am doing that well with it. I will find out for sure what is going on Monday, at my cardiac appointment. As with any drug, everyone reacts differently. I really get anxious with new meds, and with changing them, as I live alone and I hate the feeling of some of the meds. Oh well, enough of that. It's in God's hand what is to be will be. Stay well and thanks for passing on the info. Sara. sunny20853@aol.com


Mina K, April 24, 1999 - Hi, I haven't written in a while since my computer was in repair, but it's back now. I have lots of news. I had my evaluation for a heart transplant this week. I was told I was too healthy (functional) at this point but if I go downhill, I should call him and they'll continue. That's the best of all news. He did say he thinks I should try Coreg despite my being asthmatic and diabetic. By the way, my switchover to insulin from glucophage has gone really well. I am now in very good control and even dropped my second injection per day. I also am now feeling much stronger and less tired. Only on days when I really overdo it, do I feel really tired, but no edema and no weight gain. So my next move is to see the cardiomyopathy specialist at UCLA for any tweaking I might need in my meds. A local place is starting water aerobics for seniors in a couple of weeks and I'm going to try it. The evaluation doc said I should do aerobics. I can try. Best to all. Mina, age 59, EF 20. MinaKay@aol.com


Claudia, April 24, 1999 - Hi, I expect to get the diagnosis this week of CHF. I have had an echocardiogram and the right side of my heart is enlarged. I have a lot of swelling in my ankles and chest. I am taking Lasix every other day at the moment and lots of other medications, too. On the off day, I do not feel as well. I have recently been diagnosed with diabetes, asthma, and hypothyroidism. I am wondering what questions to ask the cardiologist. I am also wondering what are the best things I can do to feel better? I am 52 and all of this started when I quit smoking! Is exercise recommended? Climbing one flight of stairs is very difficult for me. I am grateful to have a place to ask these questions and appreciate any help very much. Claudia. CMSchm@aol.com


Bob, April 25, 1999 - Hi, I'm a little new to this site but have found it really helpful. I developed CHF about 5 years ago but have had 3 heart attacks previous. I also have had bypass surgery and have an inplanted defibbillator. My EF is about 18%. I do pretty well but since January, I have run into some problems. My medication has now been changed. I am not able to take beta-blockers, unfortunately. I have been on amiodarone for almost 10 years. My question for you out there is that I just heard about CoQ10 from this Website. I would like to try it but wonder if it would be compatible with the amiodarone. Thanks. hermit@gte.net


Virginia R's April 25 reply to Jon's April 24, 1999 - Hi Jon, I guess I am still confused as well. Dad will have the cath done through the vein in his neck. The doctor says the clot on his left side is too dangerous to do a cath through the groin. It is my understanding that after they do the cath, they will leave it in place and try or test different medications on my father to see how he reacts to them, in an attempt to find a medication or combo of medicines that my father's heart reacts best to. This will take place over a period of a few days, possibly 4. I panicked when I read Milo's account of flat-lining on the table. I was wondering if Milo went through the same sort of procedure that my father is scheduled for. His doctor's appointment is on Monday. I am traveling up to Dad's on Sunday the 25th. We will be in Dallas on Monday and then back home. I will check posts from Dad's house. giniroberts@hotmail.com


Jon's April 25 reply to Virginia R's April 25, 1999 - Hi Virginia, I am also interested in anyone who has had a similar experience. I have never heard of testing meds intravenously via cath outside the EPS or emergency setting. Your panic is perfectly understandable and it's often hard to remember to say everything you meant to say the way you meant to say it. I forget to all the time! <g> See this article for info on a new entry method for heart catheterization. Be sure to keep us updated if you can. Jon.


Lori P, April 25, 1999 - Hi, I have a question for you all. Last night my husband took me to the emergency room because I felt very weak and dizzy. I was seeing "fuzzy" shapes and couldn't get rid of them no matter how much I blinked. I know that sounds weird. Also, my blood pressure was quite low. They did blood tests and told me that I am anemic, probably due to being on the heart-lung bypass machine 3 weeks ago during surgery. The doctor said that when your red blood cells drop, you feel weak. I'm supposed to call my cardiologist Monday morning and talk to him about it. Has anyone else experienced this? Could it be temporary? Thank you. lpearson@cdsinet.net
 
Jon's Note: Let's see: Surgery, wedding, honeymoon all in a row, I'd be dizzy too! <LOL> Seriously, I hope it is temporary, Lori.


Bill D's April 25 reply to Jan P's April 24, 1999 - Hi Jan, When your doctor moved you up from 5mg Prinvil to 20mg, that's considered a large dose. I don't have a clue as to why they are lowering your Coreg dose. I was having nausea problems that I traced to Coreg. Now I take 25mg in the morning and 12.5mg in the evening. Were you having any specific problems where Coreg might have been the culprit? I sleep half the day too. If brain fog means forgetting things, I'm pretty foggy too! <g> Bill. billdog@gate.net


Muriel's April 25 reply to Connie D's April 22, 1999 - Welcome Connie, You've come to the right place for help but it will take time and patience. Remember, sooner or later someone will show up with the same problem, though it may take time to get the answers. The best advice I've received is to read The Manual. You get something new each time you read it.
     I have the left swollen ankle, foot and leg, and on rare occasions, a right swollen ankle. I am a type 2 diabetic, hypertensive, and have had an aortic heart valve replacement for 5 years. The heart doctor warned me I would have swollen legs and ankles. That didn't happen until my husband suffered from the effects of CHF in 1997. I took care of him for a year and didn't continue to exercise until after his death last year. My primary care doctor tells me in a simplified way that the blood flow isn't good in my legs. I am in the process of finding a hypertensive medication and a diuretic to bring down my systolic blood pressure, but so far to no avail. I do go to the Senior Center here several times a week and exercise for an hour or more. It helps cut down on leg cramps and I have lost a little weight.
     Like you, I am searching for answers and I talk almost daily with several of the more experienced people who help me talk to my physician and ask the right questions. You didn't mention diabetes, though other things cause your legs to swell. As for your family, they cannot believe that anything can happen to Mom, so be patient with them. They are more scared than you. My husband and I had to keep going for the sake of our children but they do come through for you. Right now I have bronchial asthma and try not to scare my daughters because they all live in different states and can't really help that much since they have to earn their living and can't come running every time something goes wrong.
     This may be a test of your faith but I can say that I have seen more miracles in my life the past 2 years than I have in a lifetime and at times, it has been rough. These people at Jon's Place are part of God's miracles. Stick with us because we love you and your family, and pretty soon I think you will return it. Love to all of you. Muriel. wldwdflwr@aol.com


Muriel's April 25 reply to Lori P's April 25, 1999 - Hello, Lori, I can understand your concern. For the past year and a half, I have had the same symptoms when I get overloaded. I get swimmy headed, get blind spots going over my eyes that take about 3 to 5 minutes to pass. I have to stop what I am doing and rest until it all passes. I lost my husband in October of 1998 and the paperwork descended on me. Between the grief and the bills and the mail, I kept the folks at Jon's Place busy helping me keep my sanity. I don't use medication for this, just rest, if that's possible, and slowing down for a bit because I have enough medication with type 2 diabetes, hypertension and macular degeneration of the left eye.
     You are with a group that is going through some version of your problems, so try to stay with us and share with us and we will with you. My family and friends love me but they don't know how to deal with my problems and itıs hard to get enough time from the doctor to answer the most simple question. I've learned to take notes in with my questions and get better answers after having help from here. Keep us posted. Especially if you find anything better for the upsets. Muriel. wldwdflwr@aol.com


Linda O, April 26, 1999 - Hi all, Virginia, I am interested in the stomach problems that you mentioned. Do I need to go to The Archives or do you remember the dates that you discussed this with the forum? I am having stomach pain and it seems to migrate from the top to belly button and then lower to the bladder area. I had gallbladder surgery with the 4 little scars and it seems to be around there. I am on Coreg 50 a day and also am in a trial for amiodarone. I think I am on placebo. Linda O, age 59, EF 24. norvalo@clarinda.heartland.net


Bobby F's April 26 reply to Virginia R's April 24, 1999 - Hi Virginia, When I had my cath done 8/98, I had tubes inserted both through the groin and also the neck. He went through the neck to do a biopsy of my heart to see if there was any infection from a possible virus since mine was idiopathic. I had an IV hooked up and I asked the nurse what were they giving me for pain since I would be awake for the procedure. She replied "Valium." I told her that I would need the strongest thing that they could give me since I was a naturally nervous person and when I went to the dentist to get a tooth filled, the doctor would usually have to give me several shots before he started to drill. I would always feel the drilling after the first one so I always had to have more. She said, "Valium should do it." Well it didn't and when they started the incision in my groin, I felt it right away. I told her that they were going to have to give me something else. The doctor then instructed the nurse to give me a shot of demerol in my IV. Well, that did the trick and at that point, I didn't care what they did to me since I felt no pain. The worst part of the cath other than putting the IV in the back of my hand (that hurt and you need to ask them if they can put it in his arm instead) was lying flat on my back for 6 to 8 hours. The next morning, I woke up with bad chest pains and my wife took me immediately to the doctor, and after checking me, they decided that it was from the biopsy that they had done the previous day and that the pain would go away, and it did. Also, after going through the neck, it left a little bump on my neck, but that eventually went away too. Bobby Farish. brasswood@greenvillenc.com


Jon's April 26 reply to Bobby F's April 26, 1999 - H Bobby, I'm curious about everyone's cath experiences. Do you know how many procedures the cath lab did per year where you had yours done? I had mine at a transplant center where caths were done at high speed all day long. The reason I ask is that I had no sedatives at all and never felt a thing except for needing a bit more local in my neck at one point. I never felt the biopsies during or after the procedure. After listening to 3 years worth of cath experiences, I'm just wondering if more experienced operators make the difference. Jon.


Ann ?, April 26, 1999 - Hi, I just got out of the hospital this last Saturday and I received a 24 hour drip of dobutamine. I was reading about this drug and despite the fact that it made me feel great, I was upset when I heard that it is only given to CHF patients that are at end stage or in very serious condition. I never thought I would be in this situation. After I had the doubutrax treatment, they tried me on Coreg but my BP was too low. The doctor wants me to come back in a couple of weeks. He cut my ACE inhibitor in half and wants me to take the rest of my meds as I always have. Is there anyone out there who has experience with dobutamine treatments and exactly what are they for, if they don't make your heart any better? Thanks. dacadcannann@yahoo.com


Jon's April 26 reply to Ann ?'s April 26, 1999 - Hi Ann, I have never taken dobutamine but it is an inotrope, which is a type of drug that increases the strength with which your heart contracts, or squeezes, during each heart beat. It is given when a CHFer is "in" heart failure and probably will not get out without artificially increasing the heart's efficiency. The normal meds like Coreg and ACE inhibitors increase your heart's efficiency by reducing the load on it - they expand your blood vessels to reduce pressure and stop certain chemicals from stressing your heart. Inotropes, on the other hand, actually make your heart work harder. This is great for quality of life but it can shorten life span, and that's why it isn't given routinely. Jon.


Virginia R, April 26, 1999 - Hi all, Bill, I will ask the doctor about the Prinivil. I feel like that's the culprit for the cough. It began after they doubled his dose. They will double it again tomorrow. Jon, I expect the cath to be scheduled within the next week or two. I will try to ask the doctor more detailed questions tomorrow. This cardiologist appears to be up on the latest treatments. His name is Dr. Yancy at St. Paul's in Dallas. There was a writeup on him in the Fort Worth paper a year ago. I can't find my copy but will try to get another one and will forward any info that might be interesting. I'll keep in touch. Thank you all. giniroberts@hotmail.com


Heather S, April 26, 1999 - G'day, all you wonderful people, I am back from prison. I bet you've all forgotten me already. In spite of the fact that it is difficult to type while doing handsprings, I shall contrive. I am cured! It has to be thanks to the prayers of all my friends because my doctors (a whole swag of cardiologists) can't explain it. Let me tell you about my week. Because I was a candidate for transplant and had a weird juxataposition of conditions, I was given every conceivable heart and lung test the good doctors could dream up. I was then kept an extra day while they thought up some more. I had MUGA, cath, TEE, stress test, lung function tests, spirometry, and enough nuclear injections to start glowing in the dark. I felt nervous through the cath while I watched that screen and saw these puffs of dye coming out the end of that snake-like wiggling line and spread around the heart. The only part that hurt was when they applied physical pressure to stop up the artery after. Amazing. All this nuclear technology and they have to use a method 3 million years old to stop the bleeding. The only test I really hated was the TEE because I had to swallow a garden hose and the meds didn't take, and I kept trying to gag it up. Yuk. Nevertheless, my appetite was not impaired for lunch afterwards!
     My lungs are unmentionable but the good team of docs could find nothing wrong with my heart. The right ventricle has shrunk to normal. The right pulmonary pressures are a little variable but normal, and the ASD has vanished, yes, vanished. How can you "lose" a hole in the heart? This is their theory so far: Infection severely affected my lungs, which built up right heart pressures to unendurable. It was a question of which would blow out first. Instead of the heart or artery giving way, I blew a hole through the fosse ovale - called a cor pulmonare - which probably saved my life. Following multiple treatments, this actually healed itself (unusual) and everything went back to normal. I still have to face possible lung transplant but now will be able to choose on the basis of quality of life only instead of 12 months to life or death. Jon, may I stay? I love all you guys and gals just so much and the docs say it could happen again given the same set of conditions. They havn't even taken away the heart meds yet while they still scratch their heads. After finding this site, I didn't mind having CHF in the slightest! On a parting note, I just loved those orderlies who pushed the wheelchairs. They went sooo fast. Wheee. Heather. rock@net-tech.com.au
 
Jon's Note: Stick around - we like ya


Hope M's April 26 reply to Lori P's April 25, 1999 - Hi Lori, I had symptoms like that when my digoxin level was too high. Even though my blood test said I was in the normal level for people taking dig, it was too high for me, as evidenced by my symptoms. The doctor had me skip it for a day and then take half the dose after that. If you are anemic and the doctor wants you to take iron, ask for the time release form. It is much less likely to cause stomach problems. Been there, done that! Hope. mcneils@ibm.net


Ruth P's April 26 reply to Lori P's April 25, 1999 - Dear Lori, My husband was anemic for weeks after his bypass and valve replacement surgery. He took an iron supplement for at least one year after. His count is satisfactory now but as he is on Coumadin and it is monitored fairly often. Best wishes to you and your husband. Jon is right, even happy stress can takes its toll on us CHFers. I haven't been posting for awhile as I have been kind of tired lately. However, today was one of my good days so I was able to go to church and get the therapeutic effect of the love and music I always find there. Take care all. Ginger, I still haven't been able to get into the chat room. I will try again soon. Blessings to all. Ruth P. rpow@total.net


Candy's April 26 reply to Connie D's April 22, 1999 - Hi Connie, My right foot and ankle will swell more than my left. I have CHF and that's the sign I have to watch what I eat closer. GrPota@aol.com


Theo, April 26, 1999 - Hello everyone, I have posted a message before. It was about dry eyes in relation to the meds I was taking. I just saw there was one reaction. Thanks, Bill. I have been searching for the side effects of my meds as well. I've found some Websites which indicated dry eyes as a side effect of Vasotec and some other ACE inhibitors. I found a lot of information about ACE inhibitors and I have put my favorites on my site at http://www.angelfire.com/id/acer/indexace.html. Maybe it is of some help for some of you who are trying to find info about their ACE inhibitor. It ain't a pretty page to see but there are many copies of sites with information about side effects. I also noted that every site mentioned different side effects for the same meds. Meanwhile, I was put on Accupril and still got dry eyes. Isn't it possible that I am allergic or hypersensitive to all ACE inhibitors? I also have an irritating cough now and than, mostly in the morning, and I sweat very easily (a side effect that can be caused by an ACE inhibitor. Please, your reaction. Take care, everyone. Theo. xyz@wwdg.com
 
Jon's Note: I'm shattered - you didn't include my ACE inhibitor page! <G>


Sharon J W's April 28 reply to El R's April 22, 1999 - Hi, I am 100% paced (scary thought at times). My pacemaker is in my left side, just below the collarbone, in the same position as Christy's. I've had it 4 1/2 years and never found its looks a problem. I do strongly suggest camisole type bras for more comfort. I was always aware of it when I slept on my left side and got in the habit of hugging a pillow. I have lost 40 pounds since I got failure and it's very visible, even under light clothes. I find that it's a great year to buy a bathing suit because mallots are so popular. Frankly, I can't get too concerned with it's looks. I'm alive every second because it's there. I guess I consider it a medal of sorts. There are alternative locations, including lower torso for implant. Best wishes to all. Keep posting. sjw49@yahoo.com


Al M's April 28 reply to Jon's April 26, 1999 - Hi Jon, The doc who did mine is also in the transplant group at the university hospital. In my cath there was an "oops!" probably brought on by something I did. In my dopey state, I touched the field begun at my neck and "contaminated the field" is what the assisting physician yelled. I probably helped her choose another field to specialize in. At any rate, I ended up in ICU for 24 hours. It is unlikely they will do too many more on me.
     I have received several e-mails on the weight gain information that I posted and need to update a bit. I mentioned that my friend, the doctor of pharmacology professor, stated that TNF-a, a protein found in abundance in those with heart failure, "the TNF protein does cause weight loss and appetite suppression." The BEST study and those on Coreg found the TNF protein to be reduced in those who showed positive improvement to their hearts. A new study to test a "TNF binding compound" is to be started, to try and determine if TNF is a culprit in heart failure or just a marker of the heart's wellness. From Dr. Joe, The TNF antagonist study is called RENAISSANCE. Why, I'm not sure, unless they are implying a rebirth in the way we treat heart failure. So it may be possible that some of us may be able to be part of a "Renaissance" even if we didn't think it possible before.
     In the 7 or so years I have had this CHF thing, one of my lesser great fears has been catching the common cold and the associated congestion they typically bring on the scene. Well, after all that time, I managed to catch one, which almost immediately went to something that required antibiotics. What was prescribed was Amoxicillin, 500mg 3 times day. After 4 days on it, the cold seems to be losing. I was very much relieved to get past the old "reminders" of beginning CHF when I would sit bolt upright in bed in order to regain some normalcy in breathing. Many things like that are not forgotten. ajmiii@web-access.net


Jon's April 28 reply to Al M's April 28, 1999 - Hi, I'm honestly confused by this TNF information. The trials of TNF suppression in heart failure are well underway and have been for months at my clinic. This trial does involve an injection rather than a pill and you may be injecting a placebo, so for those who are leery of needles, this isn't the trial for you. One of the previous studies is listed at my New CHF Meds page.
     I am missing the link between beta-blockers and TNF. I think what you're saying is that the healthier your heart is, the less TNF that will be found. Is that correct? I am also confused about a"rebirth of the way we treat heart failure." The current neurohormonal model is virtually brand new and has resulted in many promising therapies, including TNF suppression. Is this already an obsolete model? I am really confused. Am I missing something or have I misread what you have said? Please help me out on this. Jon.


Sara ?, April 28, 1999 - Hi everyone, I had my follow up from Florida to Georgetown Hospital. I liked the doctor but now I am very concerned as he dropped my Lasix, upped my Zestril, wants me to continue amiodarone and added Lanoxin. My concern is he didn't seem to be too interested in the past, only of my last 6 years. I have had arrhythmia for years and both the amiodarone and Lanoxin are for arrhythmia. Has anyone had 2 drugs doing the same thing, as my arrhythmia is no worse and I didn't think about it till I got home. He also agrees with the Florida docs that I really do need a cath as I have a blockage, and with the drop in my EF from 49 to 24, he says that is the only way to try to give me more years and to be sure I am on the right meds. The heart cath will be May 5th and I have to be medicated the night before as well as that morning before going to the hospital. sunny20853@aol.com


Ben B's April 28 reply to Jon's April 26, 1999 - Hi, I do not know how many caths were done at the place I had mine but I do know they were lined up all day the day I was there, rolling us in and out. I didn't ask for it, but they gave me Versed. I didn't feel a thing but I didn't have a biopsy, so I guess that's expected. bdbrinkman@juno.com


Hope M's April 28 reply to Muriel's April 25, 1999 - Hi, You write such beautiful notes, Muriel. You are an inspiration. I haven't talked with any of my children about my lower (26%) EF, thinking that it would only scare them. They are 25, 23, 21, 17, 13, and 9. On the other hand, I need more help around the house and yard and maybe the only way to get it is to tell them. All comments welcome. Hope. mcneils@ibm.net


Sara ?'s April 28 reply to Heather S' April 26, 1999 - Hi Heather, Congratulations, what wonderful news. I will be going in for my cath on the 5th and hope I will get good news. I have to think positive in order to get through this. I was hoping this new doc (CHF specialist) would do a battery of tests to confirm what the other docs said but he agrees and I go right into a cath. Good luck to all of you. Sara. sunny20853@aol.com


Robin W, April 28, 1999 - Hi all, I just wanted to keep you updated. Due to unforseen administrative red tape (arrgghhh!), I won't be checking into the hospital until May 3 instead of April 28. It's very frustrating but hopefully this small delay will be enough for all involved to get up to speed. Thanks for letting me vent. Robin W, EF 8%, age 31. jwilson@nb.com


Bobby Farish's April 28 reply to Jon's April 26, 1999 - Hi Jon, I'm not sure exactly how many caths The East Carolina School of Medicine does on a daily basis. I would say a fair amount but probably nothing like the hospital you were at, as they mainly do bypasses, valve repair, stents for blockages and pacemakers. I'm not sure if they do many heart transplants there or not. This is the hospital where I started and it is a good one but my second opinion was at The University of North Carolina at Chapel Hill and that's where I am being treated now. It may have something to do with the amount of caths done as to the pain felt during a cath. Still, anytime a doctor is cutting on me, even if it is a small incision just for the catheter, I still want something so I'm as comfortable as possible. There is nothing wrong in asking for something for pain and I'm not ashamed to ask if I think that I may be in for some. Also a good book that is recommended for reading is, "Success With Heart Failure: Help and Hope for Those With Congestive Heart Failure" by Marc A. Silver, Jay N. Cohn. I hope everyone is doing ok and again thank you all for the kind and caring e-mails. Bobby, EF 24, praying for Robin's safe Club Med stay and quick recovery. brasswood@greenvillenc.com


Helen O, April 28, 1999 - Hi everyone, I've been meaning to do this for awhile now but there always seemed like too much else to do. I am a 25 year old college student who was diagnosed with idiopathic cardiomyopathy with an EF of 24. I was told my heart is enlarged and severely damaged. I was put on a low sodium, low saturated fat, low calorie diet. I was also put on the following meds: 20meq Potassium twice a day, 3.125mg Coreg twice a day; 0.125mg Lanoxin, 0.025mg Synthroid and 80mg Lasix once a day. I was already taking 50mg Zoloft, my birth control pill, and a 325mg iron supplement once a day. I've had a visit with the transplant people who now want me to do a stress test. They are also concerned that the cancer I had - synovial scaroma - will come back if they do the transplant and put me on the meds. The final concern they have is that I am still over 200 pounds. No matter how much I exercise or how carefully I eat, I haven't been able to lose weight. In fact, I am starting to gain. I also have been having a lot of "chest discomfort" (my doctor's words). Any help, advice, support or anything at all would help. woohoo@imap4.asu.edu


Jon's April 28 reply to Helen O's April 28, 1999 - Hi Helen, Welcome to Jon's Place. I finally started to shed some pounds but I had to drop my caloric intake 70%, that's right - 70% - to see progress. I am also on a daily exercise regimen so I was shocked at how far I had to cut back my calories just to see any progress at all. Thyroid problems may make it even tougher for you but if you go about it right and stick with your program, the weight will come off, even if you have to eat only 1/3 what you were eating a week ago. I ain't happy about the measly amounts of food, but I'm under 200 pounds for the first time in awhile. I have one positive note, though. I discovered that when you are eating very little food, it's really easy to stay on your sodium restriction. <g> Jon.


Lori P, April 28, 1999 - Hello everyone, I talked to my cardiologist today about my dizzy episode and anemia. He told me to continue taking my 325mg of iron a day and also to take Vitamin C. It will help me absorb the iron better. I'd never heard of that! I go for a checkup with the surgeon next week, then my cardiologist the following week. Thank you for the helpful messages. It's helpful to have people who know what I'm going through. lpearson@cdsinet.net


Maggie S, April 28, 1999 - Hi, I was wondering if a lower dose of Coreg will also increase EF%. I am having problems and am now on 6.25mg twice daily. I am hoping to make it to the top dose of 25mg twice a day but may have to settle for less. My diagnosis is DCM/CHF, enlarged heart, mitral valve insufficiency and arrhythmia. The recent results of a holter monitor showed atrial fib plus other irregular beats. My EF is 15-25. I have been told by 2 doctors that I could be at risk for sudden cardiac death because of the arrhythmia. I had not heard of electrophysiologists previous to reading the posts on this site and intend to ask my cardiologist at my next appointment if I need to be referred to one. Thanks for all the information. I have read The Manual and Site Index, and intend to copy The Manual for my family. Maggie S. marjac@pro-ns.net


Robert F, April 28, 1999 - Hi, I follow the stock market pretty heavily and this bit of news just hit the market. The company Scios' drug Natrecor was not approved by the FDA. Here's the article:

     Scios Inc said late Tuesday that the FDA did not approve its new drug application for Natrecor for the treatment of acute episodes of CHF. According to Scios, the FDA determined that there are uncertainties about the effectiveness and safety of Natrecor and further study of the drug is necessary. "We will work closely with the FDA to define what additional clinical studies are required for approval,"' said Richard Brewer, Scios CEO. Scios said the FDA acknowledged that Natrecor reduced pulmonary capillary wedge pressure, increased cardiac output, and produced some evidence of symptomatic benefit. However, the agency said that further study is needed to define consequences, specifically as it relates to the onset of effect and the recovery from hypotension if it occurs, Scios said.

     brasswood@greenvillenc.com
 
Jon's Note: The Phase 3 study on Natrecor was a really small one. That may have been the deciding factor.


Renee M's April 28 reply to Kim S' April 24, 1999 - Hi, I worked in a hospital too, as the supervisor of Nuclear Medicine and Radiation Safety. 5 years ago when I was diagnosed with cardiomyopathy, I had an EF of 20 and the doctor gave me a poor prognosis. I received one of those form letters too, saying I could do something else and did not qualify for SSD. I had the opportunity to see my file. I could not believe that there were only lab reports, EKG and echocardiogram tests there. Where were the Muga scans and the heart cath and biopsy information? I thought they didn't have all the medical information relative to my case so I proceeded to get it myself. I resubmitted all the information and I received letter 2, which still said I could work! I saw my file again and it said I could work as a scoreboard operator. Now, there's a big demand for that in a small town! I thought, do I have to be on the operating table getting a heart transplant before they think I can't work? Jon is right, at this point, you need a lawyer who specializes in SSD claims. I did finally get SSD after 2 years, with my lawyer's help. The lawyer told me that nowadays, unless you cut off a limb, go blind or have a massive stroke, you will have to fight for it. Almost all their heart cases have had to go to hearing. It's a tedious process but don't give up because you are entitled to this benefit. You paid for it! Good luck. I'm praying for your success. Renee. Auntonay@aol.com


Renee M's April 29 reply to Marvin B's April 23, 1999 - Hi, My father has end-stage CHF. Two years ago, he was doing ok and his doctor put him on accupril. He also lost all sense of taste and had a very poor appetite as well. He became so dehydrated he was hospitalized and almost died. After discontinuing the accupril, it took him about 3 months to feel better. All his taste buds returned and he even gained a little real weight. Unless you can force yourself to eat even though food doesn't taste good, this may not be the medication for you. Renee. Auntonay@aol.com


Virginia R, April 29, 1999 - Hi, Dad's appointment went well on Monday. They increased his Prinivil. We went into the infusion room, which is a large room with geri-loungers. They hooked my father up to 2 separate machines. One gave blood pressure readings and ECG printouts, while the other machine was a non-intrusive method of reading his fluid retention, cardiac output and oxygen. It was a hydra-something or other. The nurse stated that this machine was accurate within 5% of determining correct levels as compared to a cath, if that makes any sense to some of you. I will try to ask better questions and write down what I hear next time. They first checked him to see how he was doing physically. He was "near normal" so they were able to proceed with doubling his Prinivil in the office. They gave my father his Prinivil, asked him if he wanted to watch a video since he was going to be there for awhile or did they want him to turn out the lights for him? He fell asleep right away.
     They also took a p-tine and cbc blood draw from him. He tolerated the medication very well and was released. The next step is the heart cath. They will check the pressures in his heart and may give him medication via catheter to lower or raise his pressures accordingly. Once these pressures are stabilized, they will tailor his medications orally. If dad's pressures stabilize well, he may only be in the hospital for a day. If it takes a little longer, then he will be in ICU 3-4 days while they adjust this. I have already forgotten the name of the medication they would use. The nurse named 3 possible drugs but I believe only one will be used because Dad is on Coreg. I'll really try to get better information written down next time and the name of those new machines they hook up to dad. Anyway, I feel certain we have a good doctor now.
     Monday morning, they were training a nurse from Seton's Cardiovascular Clinic in Austin while we were there and the nurses were aware of Jon's Place! <g> If you could point me in the right direction in The Archives for medicine used for pressures in the heart, I'd appreciate it. Thank you again. giniroberts@hotmail.com


Renee M's April 29 reply to Ann's April 26, 1999 - Hi, I do have some experience with dobutamine treatment with my father. I was heavily involved with his care. Three years ago, he had end-stage CHF. I didn't think anyone could hold as much fluid as he had in his lungs and body. The doctors were about ready to call it quits when one of his cardiologsts decided to do daily IV dobutamine treatments at home. Prior to this he was getting it every 6-8 hours in the hospital. He had also been separated from my mother for almost 3 months - she was also ill. They had to work him up to 14 hours without dobutamine to get him home. He was on daily dobutamine for 5 months, 3 times a week for 1 1/2 years. For the last 6 months, he has been on it once a week. I don't know how it works medically but it has done wonders for my Dad. The doctor only gave him this to get him home. No one expected him to live this long. His quality of life has vastly improved and he is able to enjoy life again, with some restrictions and lots of oral meds and oxygen. It has also helped his one kidney to function better. He has not been hospitalized since 4/97. That's pretty good for a CHFer. We are pretty certain the dobutamine made the difference, as very few changes were made in his oral meds. I hope this helps. Renee. Auntonay@aol.com


Robin W, April 29, 1999 - Hi everybody, In regards to cath experiences, I'm the biggest baby on the face of the earth when it comes to pain. The words, "You will feel a little discomfort" to me means, "It will hurt!" I have learned to request 2mg of Versed before any procedure even begins. When I am given the IV shot, I make sure they give me 2mg and not one. If the doctor or nurse gives me a hard time, I stick to my guns until they cooperate. You know yourself better than anyone else. The drugs are there for a reason. If you are too uptight and nervous, it is not only harder for you but the doctors as well. Jon, I've had my caths done at transplant hospitals where they do them all day, every day. Good luck to everybody. Robin W, EF 8%, age 31. jwilson@nb.com


Jon, April 29, 1999 - Hi all, If you think you need drugs for a procedure, there's nothing wrong with asking. I did not say or imply otherwise in my post. I wondered aloud if people having their cath done at high volume centers and by high volume operators experienced any pain. I wondered this because, as I said, I had no pain during my cath even without sedatives. Jon.


Carolann, April 29, 1999 - Hi, I went in for my sleep study last night and was diagnosed with sleep apnea. In addition, they had to give me oxygen as my O2 sats dropped. I don't go see the cardiologist for 2 weeks, when all the results of the study will be finalized. The doc was right, lack of oxygen probably caused my DCM. Now for worse news, I fell down the stairs Friday night. I ended up with a severely sprained ankle, broken foot bones and torn ligaments, which will probably require surgery. When it rains, it pours. I go to the orthopod tomorrow for further evaluation and a hard cast. Gonna try to convince him for a cast that will allow me to continue my water aerobics. Any advice on sleep apnea or oxygen? Carolann. Saphirebbw@aol.com


Deb L's April 29 reply to Sharon J W's April 28, 1999 - Hello ladies, I was reading the posts you had and thought I'd touch on them. I am 43 and have been 100% paced since I was 9! I had my first pacemaker implanted in my abdomen in 1964. I had a VSD repair in 1957 at the Mayo Clinic and ran into heart block. My heart rate was 44bpm except when I was sick and then it would go to 17 or stop completely. I grew too quickly and broke the wires! They then implanted it under my left arm. Ugh, I hated it there. At age 19, they implanted it just below my collarbone but 3 weeks after surgery, it slid into my left breast and there it sits to this day! A nice little pocket formed and I can wear a bra, a bikini (ok, not recently) and you don't see it! I am a tad lopsided but hey, now that I have CHF, that's the least of my problems! So I thought I'd just let you know that there are many different sites for pacemakers and I think I've had them all! dlake@kawartha.net


Paul M's April 29 reply to Hope M's April 28, 1999 - Hi Hope, Tell them, tell them, tell them. Yes, they will most likely encounter the same fears you went through when you were first diagnosed. Did you get over some of those fears? I think so and so will they. If they don't know, how can they understand that you really need their help at times? If I had a parent who was hiding the fact that they had heart problems and did not tell me, I'd be furious! paulmcferrin@worldnet.att.net


Paul M, April 29, 1999 - Hi folks, Just a quick update on my health. I'm on the road again! Yes, after about 6 months without a driver's license, I was able to pass the vision test without any restrictions other than glasses. My wife and I are no longer glued together everywhere we go. I'm still having weight problems and it is killing my back. I can only walk about 8-10 minutes before I have to stop. I went to my PCP today and he is concluding that my weight gain is due to the amount of insulin I'm taking. I'm taking about 150 units per day and since insulin is a growth hormone, that is a likely cause of my excess weight. He is running tests to see how much insulin my pancreas can produce. With that information, he will prescribe some oral meds to help me lower the amount of insulin I take while still being in good sugar control. By the way, my wife and I are going to Vermont soon. If anyone knows of any hot spots that one must visit, drop me a line via e-mail. We prefer land based activities. paulmcferrin@worldnet.att.net


Noel, April 29, 1999 - Dear CHF friends, I have had CHF since June of 1990 after a 4-way bypass in November of 1987. I have been on many different medications, most recently Losartan. I participated in a study of Losartan before it was approved for CHF. My question is, does anyone know of studies being done on left ventricular assist devices where one might apply for test patient status. or other heart failure assist device research which needs volunteers? I am to possibly go into another drug development study in the near future but feel I might be at the stage where I should be trying something else. I feel Coreg caused me to become diabetic and it also did not make me feel good. My doctor said that these meds weren't supposed to make us feel good but extend our lives. noel-palmer@juno.com


Milo K, April 29, 1999 - Hi, Time for some humor:
 
     Way out West, a cowboy was driving down a road, his dog riding in the back of the pickup truck, his faithful horse in the trailer behind. He failed to negotiate a curve and had a terrible accident.
     A police officer came on the scene. An animal lover, he saw the horse first. Realizing the serious nature of its injuries, he drew his service revolver and put the animal out of its misery. He found the dog and did same thing. Finally he located the cowboy, who had suffered multiple fractures, off in the weeds. "Hey, are you okay?" the cop asked. The cowboy took one look at the smoking revolver in the trooper's hand and quickly replied, "Never felt better!"
 
     A newly promoted colonel had moved into a makeshift office during the Gulf War. He was just getting unpacked, when out of the corner of his eye, he noticed a private coming his way with a toolbox. Wanting to seem important, he grabbed the phone. "Yes, General Schwarzkof, I think that's an excellent plan." He continued, "You've got my support on it. Thanks for checking with me. Let's touch base again soon, Norm. Goodbye."
     "And what can I do for you?" he asked the private. "Ahhh, I'm just here to hook up your phone," came the rather sheepish reply. Milo. via paulmcferrin@worldnet.att.net


Jon, April 30, 1999 - Hi everyone, It's been a long week around here. I am in full-blown CHF fatigue and have had problems typing even for a short while. So, the forum will be updated as I am able and when I get some energy back, I'll try to be a bit more regular. My doc says my heart is almost totally compensated - let him wear this body this week and he'd change that tune! :-) Jon.


Luc D, April 30, 1999 - Hello to you all, Yes, It's me - the Luc - from Belgium I am back again. I am glad to see that some of you are much better! There are also new people on our site and this a great to see; how much people really like us. I have also read that there are more people who have cardiomyopathy so I am not alone with this terrible disease. How do you all deal with such disease? I still have the same problems with chest pains caused by ishemia, and like some of you will know, I have to go back to the hospital for a MUGA on May 10. Let us hope they will help me out this time or I will kick some behind! We are one big family here and we must not forget this! Also, a big thank you for Jon, he keeps this wonderful site going! All the best from Luc. luc.Deseins@ping.be


Jana B, April 30, 1999 - Hi, I've felt good lately. I lowered my Coreg and today I went back to work. It was good to work again! According to my doctors, I am totally disabled. Over the weekend I planted some flowers, re-did my daughter's bedroom and even washed the van. I just wanted to update you all. Jana B, EF 21. Jbyers4u@aol.com


Louise N's April 30 reply to Jon's April 29, 1999 - Hi, I also did not have any pain involved in my 2 cardiac caths. I had expected quite a bit because my mother had 3 and carried on about them so much that I was terrified. The worst thing was the 6 hours you have to lie still afterward. My dear mother passed away at age 80 from cancer, not the heart condition (coronary artery disease) she had for 30 years. For 30 years she would put up her hand and say "If God wants" when we discussed our next meeting, which was never less than a couple of days away. If only I could hear her say again "If God wants." confuzed45@worldnet.att.net


Mike W, April 30, 1999 - Hi all, I'm a daily lurker. I know from reading all the posts that there are some northern New Jersey folks on the list. I'm looking for any recommendations for a cardiologist/CHF specialist or clinic to follow up on my treatment. My old heart doc, whom I was not too fond of anyway, moved his office and I'm a long time (30 years) anxiety/panic sufferer with severe agoraphobia so I need to find someone close by. I live in Pompton Lakes (Passaic County). I'm also umemployed and have no medical insurance but I know there is no free or even relatively cheap health insurance. I just called a local hospital clinic and found to my horror that they charge $187 per visit. I was paying $200 a visit with my cardio MD! Any info would be helpful and to keep down the noise on the forum, you can e-mail me directly at mikeyw@intercall.net


Ginger's April 30 reply to Hope M's April 28, 1999 - Hiya Hope, Your kids are almost the exact same ages as mine. I told mine I was sick but just that I had a heart condition and that there would be days when I would be tired and would need their help. It worked well for a while. I did not tell the younger ones that DCM could be fatal, they are to young to scare like that but the older ones know. If you want to talk about kids, e-mail me. Cya's at chat, ya'll. Hugs, Ginger. mystery@laker.net


Ben B's April 30 reply to Jon's April 29, 1999 - Hi, Your story about dieting and sodium reminds me of my dad. He has had CHF about 15 years now and aside from taking his meds doesn't think much about it. He has had a total of 2 echos and wouldn't know his EF if you asked him. A year ago, his legs swelled like balloons from edema. He went to the docs and weighed in at 300lbs. He went on a 1200 calorie a day diet and lost close to a hundred pounds. He paid no attention to sodium. His feet and legs are now normal size. It just goes to show it is hard to fit much sodium in 1200 calories. Of course, I do not recommend his method for anyone else. bdbrinkman@juno.com


Sara ?'s April 30 reply to Virginia R's April 24, 1999 - Hi Virginia, When I had my first heart cath, I went into cardiac arrest. The procedure was going on and I was talking to the doctors, then out I went. The next thing I remember was everyone rushing around, several nurses and doctors attending me and my chest burning with pain. That was from the paddles, so you don't have any warning, everything just stops and you don't feel anything until the little old ticker starts ticking again. Best of luck, Sara. sunny20853@aol.com


Dennis F, April 30, 1999 - Hi, I have read all the manuals and materials dealing with congestive heart failure, and am convinced that is what I have! At least, this would place a label on the multitude of symptoms I am experiencing. Most days and most of the time, I feel like I am going to die. Right now I am having one of my better moments and I feel terrible! I will be having an EF test May 3. One question: previously I had extremly high blood pressure readings. A typicial reading would be 178 over 124. Some readings would be 218 over 166. Now I have 130 over 90, or 136 over 84. What happened? After 25 years, my blood pressure has returned to normal. Is this unusual? God bless you all. Dennis. frerichs@keynet.net


Hope M's April 30 reply to Paul M's April 29, 1999 - Hi Paul and everyone who has sent me e-mail, As far as I can tell from all the experience here, the vote is 100% for letting the kids know just what is going on with my heart. I spoke with one of my cardiologists today on the phone (6 hours away by car) and he said, among a lot of other things, that when I come in to see him he will even write a note to my children and tell them that "Your mother has a serious heart condition. You can show your love by helping with the house and yard work." He also felt I should give Coreg another try, even though I had lots of side effects before. He thinks half or less than the amount I was taking might be beneficial and reduce the side effects. I'm more than a little leery when I read about people developing diabetes, though! Anyway, if everything works out with the HMO, I'll see him in May. Hope. mcneils@ibm.net


Brian H, April 30, 1999 - Hi, How can one improve the heart's pumping ability? If a heart is enlarged, can it be brought back to anything like the normal and "safe" size? bhinkley@cwcom.net


Tom S' April 30 reply to Jon's April 29, 1999 - Hi, Pain? I never felt a thing except when the cath was apparently slipped through a heart valve and I felt a corrugated edge that tickled more than anything. I never ever felt the biopsy part and wasn't even aware they had made an incision in my leg through which all the cath gear was inserted. The only drug administered orally was an over the counter Benadryl capsule. I was cathed in a high volume clinic which performed upwards of 35 heart caths a day. ijp44@hotmail.com


El R, April 30, 1999 - Hi, I am scheduled for an EP study on this next Wednesday, May 5th. If it is decided to implant the difibrillator, it will be done later that same day. I am a little nervous. I cannot wait for it to be Thursday. I have it set with my favorite anesthesia guy, and will have my reading material ready for him. I have been having funny little flutters. When I noticed this yesterday, I listened to my heart with a stethescope and it seemed like about every 5th beat there was a pause, then 2 quick ones, then the patter.


Jon, April 30, 1999 - Hi all, As of tonight, both mailing lists are on the blink. I have no idea why and neither does Prodigy. They have kindly moved me up the chain to someone who actually knows all about Internet e-mail (for real) and their own network. We are trying to figure out if a recent incorrect address addition has thrown a monkeywrench in the works or if it's my mail client or their network. Please also read the Loved Ones' forum daily in the meantime, to keep up on everyone who could use some support. Thanks. Jon.


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.

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