The paperwork never ends The Archives
June 1-15, 1999 Archive Index CHFpatients.com

Cecil C's 6-1 reply to Helen O's 5-30     try getting in The Zone
 
Hope M 6-1     update, limited motion exercise question
 
Al M 6-1     newspaper article about drug trials
 
Ben B 6-1     lower EFs & feeling worse, artificial hearts, questions
 
Linda O's 6-1 reply to Bobby F's 5-30     Bobby F, Helen O, LeeAnn D
 
Freddie B 6-1     death in the family
 
Diana 6-1     intro, chest pain questions
 
Bobby F 6-1     piece by Erma Bombeck
 
Julie Swanberg 6-2     low BP-sodium intake question
 
Pat L 6-2     update, stress echo, meds & more
 
Bill D's 6-2 reply to Diana's 6-1     heartburn possibility
 
Kim S 6-2     salt substitute questions
 
Susan P 6-2     valve surgery update, prayer request & more
 
Fred 6-2     intro, frustration & helpless feeling & more
 
Chuck S 6-2     fluids restriction question
 
Pat L 6-2     post correction
 
Roger G's 6-2 reply to Rick M's 5-30     think positive
 
Roger G 6-2     it's hard to keep up
 
Jon 6-3     need Webtv help, hospital choice
 
Pat D's 6-3 reply to Pat L's 6-2     Norvasc experience
 
Peggy C 6-3     glad to be back & more
 
Jana B's 6-3 reply to Bill D's 6-2     Bill, antacids, Helen, Pat, Coreg
 
Jan P's 6-3 reply to Pat L's 6-2     Coreg experience & more
 
John Len 6-3     Medicare HMO dropping me, equipment questions
 
Jon's 6-3 reply to John Len's 6-3     leasing vs buying equipment
 
John Len's 6-3 reply to Jon's 6-3     Medicare, HMOs & more
 
Jon's 6-3 reply to John Len's 6-3     medical equipment, Medicare & more
 
Pat D 6-4     health insurance medi-gap questions
 
LeeAnn D's 6-4 reply to Kim's 6-2     salt substitutes
 
Fred 6-4     thanks, dizziness, pacemaker need, attitude & more
 
Jon's 6-4 reply to Fred's 6-4     dizziness, lightheadedness & more
 
Joy R 6-4     update, thanks & more
 
Pat L 6-4     thanks, HMO CHF program & more
 
Betty 6-4     ACE inhibitor question, update & more
 
Tom S 6-7     am I missing any SSD benefits? & more
 
Claudia S 6-7     thanks, update, enlarged heart questions & more
 
Sammie 6-7     intro, questions
 
Jon's 6-7 reply to Sammie's 6-7     some answers, but not all
 
Joy R's 6-7 reply to Fred's 6-4     lightheadedness & more
 
Roman G 6-7     EF accuracy & retirement questions, & more
 
Leland Y 6-7     keep your head up
 
Linda O 6-7     stomach problems questions
 
Jon's 6-7 reply to Linda O's 6-7     stomach problems
 
Sharon J W 6-7     seek name of med - starts with M
 
Bobby F 6-7     poem
 
Renee M's 6-7 reply to Ed's 5-30     SSD timing
 
Renee M's 6-7 reply to Kim S' 6-2     salt substitutes
 
Jack 6-7     salt substitutes
 
Doris R' 6-7 reply to Claudia S' 6-7     meds, coping, energy & more
 
Doris R' 6-7 reply to Sammie's 6-7     grapes versus wine & heart health
 
Tandy K 6-7     lightheadedness questions
 
Rick M 6-7     salt subsitutes, sharpness needed
 
Phyllis A's 6-7 reply to Joy R's 6-7     thanks for the info
 
Jennifer's 6-8 reply to Sharon J W's 6-7     meds starting with M
 
Robert A's 6-8 reply to Tom S' 6-7     tax reductions for disability
 
Tom S 6-8     doctors, fatigue with heart problems
 
Linda O's 6-8 reply to Jon's 6-7     stomach problems & solutions
 
Jon's 6-8 reply to Linda O's 6-8     stomach problems & solutions
 
Al M's 6-8 reply to Pat D's 6-4     Medicare plan problems & possibilities
 
Christine D 6-10     hi, alternative therapy & more
 
Pat L's 6-10 reply to Tom S' 6-8     Coreg dose, breathing & more
 
Lou's 6-10 reply to Sharon J W's 6-7     metaprolol? Webtv
 
Bill D's 6-10 reply to Al M's 6-8     buying health insurance
 
Della R's 6-10 reply to Jon's 6-7     horse puckey & laughter
 
LeeAnn D's 6-10 reply to Sammie's 6-7     flying & oxygen, headaches & more
 
LeeAnn D's 6-10 reply to Claudia's 6-7     meds, timing, dizziness & more
 
Amelia 6-10     family history, low EF, meds question
 
Jack 6-10     importance of your medical records
 
Doug K's 6-10 reply to Tom S' 6-8     doctors' comments & more
 
Sara's 6-10 reply to Sammie's 6-7     PAs, taxes, Medicare & medigap
 
Phyllis W 6-10     heat & humidity question
 
John Len 6-10     disability & taxes, & more
 
Leland Y 6-10     diet, cholesterol, blood sugars & more
 
Jon 6-12     patience please
 
Lynn D's 6-12 reply to Phyllis' 6-10     heat & humidity
 
Linda O's 6-12 reply to Phyllis' 6-10     heat & humidity
 
Joe D's 6-12 reply to Phyllis A's 6-7     tingling & numbness in extremities
 
Karen K 6-12     update, PA qualifications & more
 
Cindy's 6-12 reply to Phyllis' 6-10     heat & humidity
 
Ginger 6-12     I have a sick sister, chats
 
Ben B's 6-12 reply to Roman G's 6-7     EF measurement
 
Pat D's 6-12 reply to Sammi's 6-7     PA qualifications
 
LeeAnn D's 6-12 reply to Jack's 6-10     doctors, lies, & stomach walls
 
LeeAnn D 6-12     CHF moms - an attitude adjuster
 
Susie 6-12     dobutamine, uncertainty
 
Joe Stevenson's 6-12 reply to Fred's 6-2     diagnosis, symptoms questions & more
 
John Len's 6-12 reply to Jack's 6-10     internal metal
 
Rosamond S' 6-12 reply to Phyllis' 6-10     heat & humidity
 
Robert Farish's 6-12 reply to Tandy K's 6-7     also to Phyllis W, stomach problems
 
Robert Farish 6-12     be happy
 
Bill D's 6-12 reply to Karen K's 6-12     sounds good!
 
Jack's 6-12 reply to LeeAnn D's 6-12     those "metal" objects, doctors
 
John Len 6-13     Medicare & diabetic "equipment"
 
Dee K 6-13     intro, COPD & CHF, questions
 
Lori's 6-13 reply to Phyllis A's 6-7     tingling in the extremities question
 
Jana B 6-13     BP & Cozaar questions, PAs
 
Gatha E's 6-13 reply to LeeAnn D's 6-12     massage as an attitude booster
 
Joy R's 6-13 reply to Susie T's 6-12     dobutamine use
 
Ruth P 6-13     to Rosamond & Jack
 
John Len 6-13     tingling of the extremities
 
Helen O's 6-13 reply to Phyllis W's 6-10     hot days and water temperature
 
Tom S' 6-15 reply to Lori's 6-13     tingling in extremities
 
Bill D's 6-15 reply to Joe S' 6-12     magnesium
 
Jon's 6-15 reply to Bill D's 6-15     magnesium
 
Pat ? 6-15     information request
 
Phyllis A's 6-15 reply to Lori's 6-7     pacemaker questions, meds changes
 
Will W 6-15     hope & faith
 
Claudia S 6-15     sweats questions


Cecil C's June 1 reply to Helen O's May 30, 1999 - Hi Helen, Get a copy of "The Zone" by Dr Barry Sears. If you follow it religiously, it will help melt the weight off as well as increase your energy level substantially. I cannot say enough good things about what good following this dietary regime has done for me. Every time I stray, I pay the price but it is very easy to get back into The Zone with the very next meal. Understand that Dr. Sears' basic concept is food is like a drug. There are good drugs and bad drugs but too much of a good drug can damage us just as much as bad drugs. The key is to balance our food intake just as we do our medicines. Cecil3744@aol.com


Hope M, June 1, 1999 - Hi, I'm still here but not too much. My ankle surgery went well and the doctor says to lay down and keep my ankle elevated above my heart as much as possible. It only takes a few minutes of having my foot down to have my toes get pudgy. So I'm leaning back on the computer chair and have my leg up on the desk as I type. I've been wondering about lack of exercise with this routine. Can anyone e-mail me with some in-bed-lying-on-your-back-with-your-foot-elevated-on-four-pillows exercises that are ok for CHF? I'll have this cast on for 8 weeks! I do hop around with a walker a little everyday on my sprained left ankle, out of necessity, to get to the bathroom, wash my hair over the kitchen sink and wash in general. It wears me out! Thanks. Hope. mcneils@ibm.net


Al M, June 1, 1999 - Hi, A friend clipped from the San Francisco Chronicle an article attributed to the New York Times, entitled "Drug firm money for recruiting subjects gives doctors split loyalty." Apparently, drug trials done by research universities are not at fault but doctors who are in private practice are getting finder's fees for recruiting people into drug trials by the pharmacuetical compies wishing to sell the drug.
     Mentioned in the article was a 64 year old man who was encouraged by his personal physician to participate in a study of a new drug to shrink enlarged prostates. The man in question was not afflicted with this particular problem but the doc said it might prevent future problems so he agreed. The doctor got $1,610 from a drug company. Doctors who recruit the most for the study get to have their names added to the article or published report, which they don't even have to write, since it too is prepared by the drug company. The fellow mentioned above should not have been admitted because of a previous condition; he had been admitted to a hospital a year earlier with chronic slow heart rate. This ought to have kept him out of the study but the doctor said that his heart rate was only midly slow. The drug company granted the exemption, not knowing about the time he was in the hospital. A few weeks into the test, the patient complained of fatigue and the personal doc dismissed the complaints as emotional. Within a few weeks, the patient asked to be dropped from the study. Days later he was hospitalized and given a pacemaker.
     Drug companies and their contractors offer large payments to doctors, nurses and other medical staff to recruit patients. Docs who do the best job get their name on an article. Testing companies use doctors as clinical investigators regardless of their specialty. Many docs conducting drug research have limited experience as clinical investigators. One company paid docs $3,600 for each enrollment of a migraine drug. Another paid $1,100 for a new birth control pill. Another drug manufacturer paid $4,581 for a new hormone replacement drug for women. The article says a doctor who watches his expenses can easily make between $500,000 and a million dollars a year.
     I'm in a NIH sponsered trial, that is being run through the VA hospitals but if I were told by my personal doctor that I "ought to get into a trial," I believe I would ask him or her "Uh, how much are they paying you to recruit me?" Maybe you could work out a split. Stay healthy, dudes and dudettes. Al M. ajmiii@web-access.net
 
Jon's Note: Info on the article mentioned here went out in a mailing earlier. The mailing list is a good way to get miscellaneous heart info.


Ben B, June 1, 1999 - Hi, I have a theory about why people don't feel much better when their EF goes up. Since this is usually in conjunction with a decreased heart size, it is possible that the EF, which represents a percentage of the preload volume, can go up but if that preload volume is smaller because of a smaller heart, then less actual blood is getting pumped around. In fact, pumping less blood per stroke is one of the advertised effects of Coreg. Better for the heart but worse for the way one feels. I think this is because if the heart has a lot of complex chemistry about it, and is much more than just a pump, how can they possibly ever make an artificial heart, and why are they bothering? Does this sound logical to anyone else? bdbrinkman@juno.com


Linda O's June 1 reply to Bobby F's May 30, 1999 - Hi Bobby, I tried to e-mail you for a copy of your $20 message, it was great. I would like to send it to my e-mail friends if you don't mind. Helen O, I understand so very much where you are and if you just hang in there it will come off. My problem is it comes right back on and then I really feel upset. Good luck, could it be some of your medicine? I know, I'm always looking for an excuse. <G> LeeAnn, I tried to e-mail you and tell you how happy I am for you. Hang right in there and give us more good news down the road. I wanted to ask you about the gel CoQ10. I would like to know more about it. Thank you. Linda O. norvalo@clarinda.heartland.net


Freddie B, June 1, 1999 - Hi, My wife's father passed away this morning at about 6:20 AM. He had multiple medical problems that he could not overcome. This is a little rough on my wife because on June 6, 1998, her mother died. So she has lost both parents in one year. Thanks to all the wonderful people at Jon's place. Freddie. fgbatten@ibm.net


Diana, June 1, 1999 - Hi, I am new to this site so perhaps have simply not seen my problem. Bear with me. I had a triple bypass 9 months ago. I am 46 years old. I've had a heart attack with full cardiac arrest and have an implanted stent due to right artery collapse. About 2 months after the surgery, I noticed it "hurt, ached" whenever I took a deep breath but my lungs were clear. I mentioned this to my doctors but they shrugged it off. One even said it was pain from scar tissue from the operation. It has increased in severity with time. They treat me like a hypochondriac.
     I am now at a point where there is a constant dull ache in my chest, particularly on the left side, that I am constantly aware of even when purposely holding my breath to see if it'll go away. Sometimes when I inhale, the pain is very sharp but usually it just hurts. Some days are worse than others. Is this part of CHF? Is there anything I can do about it? What is it? A well meaning friend suggested it is evidence that my lungs are becoming saturated with fluids and that's why it hurts. Are they right? I'd truly appreciate anything you can tell me. You can post a reply or e-mail me directly. Many thanks! dimi8@aol.com


Bobby F, June 1, 1999 - Hi, This is "If I had my life to live over" by Erma Bombeck:

lfwcor@washingtonnc.com


Julie Swanberg, June 2, 1999 - Hi, I haven't written in awhile but I try to read the entries weekly. I was diagnosed with CHF in January after my second heart attack; I never knew I had even one! I have always had low blood pressure but since the heart attacks, it is even lower. Sometimes when I exercise my blood pressure may go as high as 90/58 but usually it is around 80/54. Tomorrow I go for my last Coreg titration. When they bumped me up to 12.5mg twice daily, my BP was 72/48. I have a local cardiologist but I've also seen a CHF specialist (Marc Silver) and after my CPX test, he diagnosed me as having mild CHF even though my EF is 20. One day recently I was feeling more tired than usual. I went out for lunch with some co-workers and went overboard on my sodium. I felt great for the rest of the day! Has anyone else with low blood pressure and beta-blockers experienced this? Since I retain very little fluid, do you think a little extra sodium on "down" days might be okay? My cardiologist said to just not add salt to my food and the specialist said to restrict myself to 2g per day. Please let me know if anyone has dealt with this issue before. Thanks for all the great information and encouragement! JSwan2406@aol.com


Pat L, June 2, 1999 - Hi Jon and all, I have been going to a new cardiologist; he had a MUGA done a few weeks ago and my EF had gone up to 53! I did tell him I still felt very fatigued and short of breath, and so he scheduled a stress echo for last Thursday. First they did an echo lying down, then they got me up on a treadmill and got my heart rate up to 157, then put me back on the gurney and did another echo. Today I saw the doc again. He said the resting echo showed that my EF was about 45 and that my heart was functioning fairly normally at rest, however when they got my heart rate up high, my heart function did not improve to meet the extra demand. In fact, it did not change at all, and today he did explain all this in a way so that I understand why I have not felt better as my EF has gone up. He has taken me off Vasotec and put me on Zestril, added Aldactone to the mix and will have me taper off Coreg completely for 2 weeks to see what happens. Then he might prescribe Lopressor, or I think he said Nordac, but I may have mixed that up. Thanks for all the support. Pat L. patlat@yahoo.com


Bill D's June 2 reply to Diana's June 1, 1999 - Hi Diana, This may sound stupid, but the symptoms you describe are the same as when you have heartburn. Do the pains seem to happen more frequently when you're lying down? How about after you have had a meal? Don't laugh. Heartburn and acid reflux are serious. You can die from the stuff. Drugs like Prevacid and Prilosec cost $100 for just 30 pills and they are selling like hotcakes! See whether TUMS helps a little. The pain from heartburn is just under your sternum. Bill D. billdog@gate.net


Kim S, June 2, 1999 - Hi everyone, What is the consensus concerning the use of salt substitutes, ocassionally? Now that summer is on its way, I love to eat corn on the cob but with salt! I've solved the butter dilemma by using a nonfat sodium-free butter spray. Any comments would be appreciated. lalakimmie@aol.com


Susan P, June 2, 1999 - Hi Friends, I haven't posted for quite a while - I have a bad heart and sometimes I just don't get as much done as I would like to. <G> In early April I started really slowing down. All my get up and go was completely gone! My atrial flutter was really giving me fits (it was back again). The dox tested me, tried new meds and zapped me 3 times to no avail. They finally decided I needed a valve job. I tried to put the surgery off until I completed a big project at work but when my blood pressure hit 92/56, I decided the dox were probably right so I told them (on Monday) that I would have the surgery whenever they could schedule me in. They picked Thursday of the same week (April 29). These guys don't believe in procrastination!
     I got 2 new CarboMedics Prosthetic Heart Valve Implants (Aortic and Mitral - complete with a warranty registration card!). I spent a week in St. Vincent Hospital in Indianapolis and 3 weeks resting at the home of my loving dance partner, even though dancing is out of the question for now. I'm finally home and back at my computer. Things happened so fast that I didn't have a chance to let you know what was on my hectic schedule. The good Lord took care of me again. He's been doing that on a regular basis my whole life. I am blessed.
     I got over-medicated with Coumadin right after surgery and was pretty depressed, sleeping 18 hours a day. The dox say I can start driving next week. That's when I'm going to start rehab 3 times a week. I need to get back to work and dancing ASAP. Unfortunately, my heart is still in A-fib and the dox only give me a 1 in 10 chance of it ever beating at a normal, steady pace. All prayers, fond wishes and gentle hopes for a normal heart rythum would be greatly appreciated. Anybody out there who is facing this surgery is welcome to contact me and I'll answer your questions. I will say that open heart surgery has come a long way since my first valve job in 1973. They are really getting a lot better at it. fulpower@fulpower.com


Fred, June 2, 1999 - Hello, My name is Fred. I just found this site about 10 minutes ago. I have had CHF since December of 1993 and in the last year it has gotten much worse. During the last few months I have constant dizziness and some confusion 24 hours a day. I feel so bad I just go sit on the front porch and wait for a drive-by shooting. I am 66 years old and insured by an HMO. I am very mad about the way I get treated. It is obvious that nothing is going to be done except to prescribe more drugs that mask the symptoms but nothing to help with the well being of my life. I stay home all the time except when I need to go to the grocery store or doctor's office. I live alone and suddenly have problems caring for myself. Two of my daughters came over today. They mowed the lawn and brought food. I felt so helpless. I never thought I would be in this condition. Thanks for listining. Anyone wishing to respond can do so at my e-mail address. I must quit now and rest. My brain shuts down after only a few minutes of work so I can't do much. I do hope this letter makes sense. Sometimes I don't. Fred. frken66@earthlink.net


Chuck S, June 2, 1999 - Hi, I'm curious. I have CHF and am on a low sodium diet with liquid restriction of 48 ounces, more or less. I just read an alternative medicine report and it says the fluid should be distilled water only as orange juice, diet-coke or pepsi, milk-shakes, decaf-coffee and other things aren't absorbed the same as water and actually help to keep the blood thicker and more susceptible to stokes. Can anyone advise whether they have heard anything similar? My doctor doesn't seem to care as long as I restrict my liquid intake and he even says milk-shakes (at about 250mg sodium) are great lunches since they don't count as liquid at all. Is anyone knowledgeable about this? cwsigerson@aol.com
 
Jon's Note: My doc makes me count soup as fluid, so I can't imagine milkshakes not being counted. I like your doc's version! (but don't know if I'd trust it)


Pat L, June 2, 1999 - Hi all, I just read my own post of June 2 and really was way off that the doc might have me take Nordac. It's actually Norvasc. I guess it was the heat and humidity that fried my brain, what's left of it after these drugs I take. <LOL> Does anybody have any info on Norvasc? Pat L. patlat@yahoo.com
 
Jon's Note: Probably my mistake - my fingers stumble a lot when handling double-spacing. <g>


Roger G's June 2 reply to Rick M's May 30, 1999 - Ditto. Every echo is better. Have positive thoughts always. You can do better. I know you can. rg2@prodigy.net


Roger G, June 2, 1999 - Hey all, I have been out of touch for a while. There's just been too much happening. I have been working on the road, trying to raise a 2 year old boy. Whew! I ended up in the hospital last Saturday with shortness of breath and swollen feet, nothing a little IV Lasix couldn't take care of but not fun. I guess I just need to remember to rest once in a while. I wish you all the best. RG. rg2@prodigy.net


Jon, June 3, 1999 - Hi, If anyone out there uses Webtv, please take a moment to e-mail Paula at Cooker225@webtv.net. She cannot get this page to load and I have no idea what Webtv is like or how to help her. Thanks!
     Back to the "hospital choice during an ambulance ride" question briefly: I have received replies from all the EMTs, EMT trainers and supervisors I wrote. They sent me their states' laws or applicable regulations and also their training on the issue. They agree that it is strictly a locale issue, with some services following their own regulations and other services obeying state legislation. The consensus is that if you can talk coherently to the EMT, they will take you to the hospital of your choice. If you cannot speak coherently to the EMT, they will take you to the nearest hospital unless you have an obvious condition requiring a specific local hospital's facilities (such as serious burns requiring a specialized burn unit). Our letters, wallet cards and registration with 911 services regarding hospital choice probably don't mean a thing if we can't speak to that EMT, guys. Jon.


Pat D's June 3 reply to Pat L's June 2, 1999 - Hi Pat L, I'm Pat, too. I just wanted to tell you that I've been on Norvasc for over a year. It is primarily an antihypertensive. If I'm not mistaken, it's a calcium channel blocker. I was started on 15mg a day but after a few months, I started having pretty severe swelling in my ankles. I assumed it was from my heart but when I called my doctor's office, the nurse said it was probably too much Norvasc, so I cut back to 10mg a day and that eliminated most of the swelling in my ankles. Other than that, I've had no problems with it at all. I take it in combination with several other medications and so far they've kept me pretty stable. Anyway, I just thought you would like to have this information. If you have any questions, e-mail me. Pat D. patj98@yahoo.com


Peggy C, June 3, 1999 - Hi, I have not been on for a long time. I had some software and hardware trouble but I am back. I have been on Coreg for over a year. As a whole, I feel good most of the time. Oh, I know I am still ill with CHF. My EF is 20% but if I don't try to overdo, I can go shopping and out to movies. I still have those days I just can't do anything but it is worth it to have soom good days. So to you who are haveing trouble feeling better, keep it up. Oh it is so good to be back on the site. Love in the Lord, Peggy C. pycarter@earthlink.net


Jana B's June 3 reply to Bill D's June 2, 1999 - Hi Bill, I can't take antacids with my meds, so you guys should check with your doc before doing so. There may be an interaction. Also Helen, a church here is having a weight control class and the concept is, "eat when you are hungry" - wait for your stomach to growl, something I haven't heard in awhile. <lol> Pat, I wasn't able to tolerate Coreg at high doses but once you find a dose that is good for you, it works, so don't be afraid to try it! JByers4u@aol.com


Jan P's June 3 reply to Pat L's June 2, 1999 - Hello everyone, Pat, it appears you and I are in the same boat. When doctors took me off Coreg for 3 days, my mind cleared up and my SOB, fatigue and lightheadedness decreased. They put me back on Coreg, then titrated it up to a level where these symptoms were minimized. My doctors are a heart transplant team. They have had 100% bad experiences taking people completely off Coreg after they responded positively to it. People lose their gains and when put back on Coreg never rise to their previous EF level. I will have a MUGA in 2 months to see if I lost anything by reducing the dose. Good luck, keep us posted as to how you are responding to medication changes. Bye, Jan. jan.peterson@usa.net


John Len, June 3, 1999 - Hi, For the legal eagles, I am among the hoards of SSD recipients which Medicare has been paying my HMO to take care of. We have to pay a fee and deductibles. My HMO has decided to dump us at contract renewal time in 2000. My HMO has always insisted on leasing my durable medical equipment - oxygen generator and bi-pap machine. They refused to buy them for me. My question is, were they obligated to buy them under Medicare or was the leasing legal? The bottom line is once they dump us, I will have no bi-pap and no oxygen generator. I sure can't afford to buy them on a Social Security check. To add insult to injury, the leasing company is also owned by my HMO and they bought out another outfit in New England and got the used equipment in the buyout. Thus, the reason they insisted on leasing instead of buying. Newspapers, Senators and local politicians don't seem to care. I have been on the plan for about 8 years or since Medicare started the plan. John. a_lenny6@hotmail.com


Jon's June 3 reply to John Len's June 3, 1999 - Hi John, The leasing is legal and normal. I don't know whether the connection between HMO and home health company is legitimate. 95% of their home health equipment is leased rather than purchased from the company that supplies my own oxygen generator. Having avoided the HMO route myself, I don't know much about it. As a potentially dumb question, wouldn't Medicare have to provide the equipment, since I assume you will revert to their standard plan once the HMO's contract is up? Jon.


John Len's June 3 reply to Jon's June 3, 1999 - Hi Jon, The whole thing started when Medicare started cutting corners and reducing fees to the HMOs.While I will agree there is a lot of waste in the medical field, the end result is the HMO's idea of cutting the waste is to get rid of the most costly patients, namely those on Medicare, disabled, old and feeble, and just keep the cream of the crop. Incidentally, Medicare pays in my area of Virginia only about half of what they pay in places such as New York City and other areas, even though the medical costs are nearly as high here. We have a very large population of military retirees. My assets, while not large, are too large to go on Medicaid so that's out and frankly I would rather be dead than go through my last day in total misery. As it is, my total income is from Medicare. If I didn't own my own house, I would not make it now.
     Medicare would indeed have to buy my equipment for me. Unfortunately, with my bi-pap machine costing between 4 and 5 thousand and then needing the oxygen generator, and I would have to pay a 20% co-payment, it will still run up there. John. a_lenny6@hotmail.com


Jon's June 3 reply to John Len's June 3, 1999 - Hi John, The whole field is a mess, no doubt about it. Still, you won't lose your Medicare because you're out of the HMO. You need to make 2 phone calls to start with: one to the company which leases your medical equipment. Even though they are affiliated with the HMO, they probably bill Medicare for you, for such leases, HMO coverage or not. Call them and find out whether or not they will in fact bill Medicare for you if you either choose another Medicare HMO, or go to Medicare coverage in another form.
     Second, call Social Security about what steps you need to take now to make sure your Medicare coverage doesn't falter when the HMO's contract with them runs out. A good online source of phone numbers and possible options is Medicare's official site. You can get Virginia-specific information about Medicare information sources here. If that Url doesn't work, let me know.
     Don't despair over lack of coverage or losing your medical equipment. You will almost certainly keep it, but you need to get yourself on a different Medicare option, and contact that home health care equipment company. Medicare will probably lease the equipment just like the HMO did - that's standard practice in many areas. So they may not buy it, which means you won't have to come up with a chunk of money all at once. This particular home health equipment company probably isn't the only game in town, so you'll be able to switch if you need to in order to get leased equipment rather than having Medicare purchase it. Jon.


Pat D, June 4, 1999 - Hi, I hope someone can give me some good advice or point me in the right direction. I currently have Medicare as secondary coverage and my husband's group insurance as primary, which is a PPO, so most of my medical expenses are paid. However, my husband is wanting to retire. The problem is that Medicare doesn't pay for prescriptions and I take a ton of medication. He spoke with an insurance broker who told him you have to purchase a medigap policy within 6 months of qualifying for Medicare, or you can't get it. Are there any good individual policies available for people with pre-existing conditions that also cover medication? I'm really getting anxious about this issue. I don't think I'd last too long without my medications. I'm sure some of us have dealt with this situation, so any guidance will be greatly appreciated. Pat D. patj98@yahoo.com


LeeAnn D's June 4 reply to Kim's June 2, 1999 - Hi Kim, After being on a low sodium diet for about a year now, I can't imagine wanting salt on my corn. It's so good without it! Anyway, I still crave dill pickles sometimes. Most salt substitutes are potassium chloride. I take 10meq of K-dur and the instructions say not to use salt substitutes. I think some other heart medications also can be interfered with if you use potassium chloride. Your pharmacist will be able to tell you with your specific meds. LeeAnn, DCM, EF 30. ddavis1057@aol.com


Fred, June 4, 1999 - Hi, I posted on June 2 for the first time. I have been very surprised by all the replies I received. Thank all of you. You do help. I think I left the wrong impression about myself. Most of you think I am drepessed because I have CHF. I didn't mean to give that impression at all. I made my peace with God and CHF a long time ago and accepted the outcome. What is bothering me is the constant ( for 10 months now) dizziness and the feeling that I am going to throw up all the time. Medicine has been changed many times and dosages adjusted and nothing has helped. My doctors and I fight every time I go because they have to limit themselves to what they can tell me so I don't know exactly what I need help with.
     I do know from other sources that I need a pacemaker to regulate my heart beat. It beats when and how it wants to, and the beats are not in rhythm so a beat does not necessarily mean it's pumping blood. My pulse ofter runs 10-30. It appears to be a simple matter of my brain not getting enough blood to stay awake on. I am trying some new medicine since Tuesday and I have slight relief. Maybe it will get better. My beef is the dizziness all the time. I can take, and have for 6 years, the fact that I have CHF and it is a death sentence. No problem being dead. The problem is dying. I am not depressed, I am just frustrated that for 10 months, I have been unable to have a clear head for even one day. I found out yesterday that my doctor is moving to another office and may already be there. He didn't inform me. Maybe he thinks he can lose me. <g> I was considering that anyway. I hope I have cleared up things some. When my brain is foggy, as it is all the time, it's hard to get things right. I am ok. I think I just wanted to vent. Again, thanks to the page for being here and again thanks for all your letters and encourgment. Fred. frken66@earthlink.net


Jon's June 4 reply to Fred's June 4, 1999 - Hi Fred, Are you dizzy or lightheaded? There are medical definitions at the Medspeak page. Lightheadedness can come from too low a volume of blood in your body, often due to too much diuretic. Coreg can cause either lightheadedness or dizziness, and some people get lightheaded on certain ACE inhibitors. If your pulse rate is dropping into the 10 to 30 range and this is not being caused by meds dropping your heart rate and blood pressure, you should see an electrophysiologist to be sure you don't have a serious heart rhythm disturbance. Also, if your current doc has known about your symptoms for 10 months and you're no better, it is probably time for another opinion! You might want to get your lung function checked to be on the safe side, as well. Keep us posted. Jon.


Joy R, June 4, 1999 - Hi, I know all the EMS talk is old now but I wanted to give you an update and my experience with them. On May 26, after feeling worse than usual, I collapsed at home and I was alone. The IV infusion delivery was scheduled for that morning and when I didn't answer the door, they came in and found me and called EMS. In our area, we have The vial of life, which is filled out with your medical history, medicines, doctors, and hospital of choice, and also family members to call. The Vial is registered with the EMS and when they respond, they know to look for one. They are kept in the top shelf of the refrigerator door. So even though I couldn't respond, before we even got to the hospital, my cardiologist had been called, the ER department had my complete history and they notified my family members that I was going to the emergency room. I was really impressed with the whole system.
     I got out of the hospital on June 2. It is wonderful to be home again. This time was really bad for me. I had a hard time coming out of it but I could almost feel strength from my friends as I lay there. It seems that Medicare was going to cut off my supply of hyperalimentation but the doctor is trying to keep it for me, stating that home infusion is cheaper than staying in the hospital. So we are going to fight Medicare to keep it. I also had more bad news. I had been feeling so much worse, I even posted about it one day about a month ago, and now we know why. It seems that along with my dyfunctional heart, I have lung involvement also. I was blaming the horrible lightheadness and tingling in my extremities to my meds but it turns out I have lost some lung function and I am not expelling my CO2 normally. Except for anti-anxiety meds, there is nothing else except O2 for this. They also told me that that by just talking, my heart would jump up 30 to 40 beats immediately. So I am trying not to talk as much and save my air for breathing. Fortunately, I have a wheelchair, so will maybeI can get out of the house when I improve a little more. I want to thank you for your prayers and e-mail, they mean so much to me. Joy. wapalaremi@home.com


Pat L, June 4, 1999 - Hi all, Thanks for all the feedback about Norvasc and lowering my Coreg. I am on one dose of 12.5mg Coreg a day now, and already my heart rate at rest is up to 79. In March, I switched to a different Medicare HMO in order to see a cardiologist who participated in the new plan and not my old one. Yesterday the nurse/case-manager of the new HMO called me to see how I was doing and said the HMO is starting a CHF program for members and would I be interested in participating? I was speechless at first, then enthusiastic, but this is a first for me; an HMO that is proactive to this degree! A different nurse/case-manager will call me with the details soon. It sounds like an educational type of program. I already have a good education about CHF from reading Jon's forum! Pat. patlat@yahoo.com


Betty, June 4, 1999 - Hi everyone, I went to the doctor (General Practioner) on Tuesday afternoon and he increased my ACE (benazephril) to 40mg twice a day. I wondered if anyone knew if this was a high dose or not. My blood pressure was down to 110 over 70, which to me was not high, but he wanted it to go lower. We also discussed beta-blockers and we are going to wait until I see the cardiologist in August to discuss putting me on the combination ACE/beta-blocker I read about in an e-mail from Jon. I keep all of you in my prayers! eswerda@ucsd.edu


Tom S, June 7, 1999 - Hi, Since the onset of my CHF, I have been lightheaded and at first was very concious of it, but after my doctor told me the difference between being dizzy (the room spinning around) and being lightheaded (room stays in one place, but feel like you are going to faint) I have all but ignored the feeling. Currently, I take a daily 50mg dose of Coreg, between 160 and 320mg of Lasix, 10mg of Coumadin and Lanoxin. Not to sound terribly greedy but now a question for those folks who successfully win SSD (Social Security Disability), are there any other goodies that become available to those who have joined the ranks of the "disabled" such as cars, boats or summer homes? I figrue I would feel much better being disabled in a nice beach home located in the Sun Belt than in my shabby, marginally habitable slum dwelling in the inner city. Seriously, are there any other benefits we may be missing? I know there must be something more than the paltry bucks Uncle Sam sends out in SSD checks each month. biggerbhoy@hotmail.com


Claudia S, June 7, 1999 - Hi, First I want to thank everyone that either left posts here or e-mailed me about the cath procedure. For me, it did help me to know what to expect! I had the cath procedure yesterday and everything went as I expected, and like everyone said, laying flat is the worst part. For me that was only 4 hours, I had a plug sutured to the artery. I have no clogged arteries or veins, clean as could be. I am grateful to not have to face that surgery just now. I do have an enlarged heart, twice as big as normal, and it is only working at 15% with a slightly leaking valve, not operable. For now I appear to be one of those people that get along pretty well with the 15% EF. They have added the lowest dose of Coreg twice a day, increased my Lasix to 40mg twice a day and K-Dur 20mg once a day. They gave me a second dose of Cozaar each day. I am to stop taking Dilacor, which was my blood pressure medicine. I am still a little worried and I am wondering if there is anyone on this board who seems to just have the enlarged heart, and what their treatment is. Now I would like to try and put my family's concerns to rest for awhile. I am also afraid of losing some of my freedom now with taking the Coreg, and feeling lightheaded and wanted to drive. Again thanks to everyone that makes this such a great board, especially Jon! Claudia S. CMSchm@aol.com


Sammie, June 7, 1999 - Hi, What a wonderful site! I am chat-challenged but usually can handle bulletin boards. Two months ago I went to my HMO doctor for a quick fix for bronchitis. He flipped, ordered me to the hospital and completely destroyed my plans for the next few days. Anyway, I had a EF of 16 and a EKG that looked like Bill Clinton's polygraph. Now, I am 20 pounds lighter (thinking about a swimsuit), my BP is 110/70, I have given up running and lifting weights, and have cut out 3 nightly cocktails. I feel fine, walk 2 miiles a day, extensive garden, have my own business and care for difficult elderly parents. However, my EKG is still extremely abnormal.
     I am on Coreg, Cozaar, Digitalis, aspirin, floursine, CoQ10, Magnesium and Potassium, as well as the normal vitamins. Now for questions

  1. What are the requirements to be a PA? I seem to have been turned over to one by my cardiologist
  2. Are an increase in migraines normal? I used to have 2 a year but am having them almost biweekly now
  3. Why is alcohol a toxin in CHF but is recommended for other heart problems? Would a glass of wine a night help with the abnormal heartbeat?
  4. I am planning on going to Peru in a few months. Has anyone had problems with altitude sickness?
  5. Although I didn't tell my HMO, I have had problems like this several times in the past few years. I didn't have insurance so I let it ride. Now that I have insurance, I am a bit afraid of the "pre-existing condition" situation. Any thoughts? Thanks for the wonderful place to hang

Sammie. swool@mindspring.com


Jon's June 7 reply to Sammie's June 7, 1999 - Welcome! For the little it's worth,

  1. I plead ignorance!
  2. Maybe. Mine (diagnosed as cluster/migraines) got worse briefly after CHF diagnosis but now are much fewer. However, it is an individual thing. I was getting them several times a week
  3. Alcohol is a cardiotoxin, period - per the Merck Manual medical textbook. Those "ads" you see are talking about coronary artery disease and blood clot (stroke) prevention, not helping the heart itself. Drinking with a bad heart is a bad idea. In my personal opinion, all this "booze in small amounts is a good thing" info is horse puckey, perpetuated and paid for by the booze industry itself. End of rant
  4. Again, ignorance here
  5. If you were not seen for it by a doctor or diagnosed by a healthcare professional of any sort, you should be okay on this one

Joy R's June 7 reply to Fred's June 4, 1999 - Hi Fred, I know how awful constant lightheadness can be. I live with it also but am learning how to deal with mine better now. So many different things can influence this. What about your blood pressure? Low BP will cause lightheadness and sometimes being a little dehydrated. I found out mine was due to CO2 buildup and by using O2 more, I have a little more levelheadedness. Living in a fog is not easy, so when you find your new doctor, hopefully he will work with you to make this situation better. I also found I had to take my vasodilator at night instead of in the morning. You will probably get many other ideas from this forum. It seems that the people here care about each other. You probably need a head to toe going over, and maybe the cause will be found and your quality will improve. Joy. wapalaremi@home.com


Roman G, June 7, 1999 - Hi, I am suffering from CHF and had surgery in 1994 with 4 bypasses but now I am suffering from shortness of breath. I also had a catheterization last week and the doctor found a 15% EF, but a previous scan made on Arpil 22, 1999, showed 30%. Which is considered the most accurate? Do I need to be retired from work? I am 67 years old but my work is done sitting down all the time, in an office. Thank you for your prompt attention to this matter. Roman. AdelfaGM@aol.com


Leland Y, June 7, 1999 - Hi, The last time I washed my car was during the last week of February, 1999. I was hospitalized March 10 and diagnosed with CHF and DCM. For all those who are new to this site and need encouragement, today I washed our cars - my Previa and my wife's Accord. I am now walking up to ½ mile twice a day. So there is a rainbow at the end of the storm sometimes. There is a silver lining in every cloud, not to mention that today is one of the better weather days we have had this year in southern California. Everyone, keep up your spirits. There are people worse off than us - Kosovo, Bosnia, China, India. Leland. LLYEE@surfside.net


Linda O, June 7, 1999 - Hi all, Jon, I evidently missed the discussion about stomach problems and what seemed to be the reasons for them. Did you ever report on your trouble and the diagnosis you were going to check out? I am having more trouble with my stomach and maybe my colon. I will go Wednesday for tests on my kidneys and then maybe on to a gastroenterologist. Thanks for the info. Linda O. norvalo@clarinda.heartland.net


Jon's June 7 reply to Linda O's June 7, 1999 - Hi Linda, My personal stomach problems are all gone. I reduced my Coreg and my exercise, started eating yogurt and stopped taking most of my supplements. I have no idea if it was any of these that did the trick for me or something else entirely. Was I supposed to look up something else? I forget things easily these days. :-) Jon.


Sharon J W, June 7, 1999 - Hi all, One of the updates mentioned the name of a drug that is given to people who cannot take beta-blockers. I lost the name of it. It started with an M. I can't locate it on my own. Can anyone help? Kind thoughts to all. delwill@gateway.com


Bobby F, June 7, 1999 - lfwcor@washingtonnc.com

Have you ever watched kids
On a merry-go-round
Or listened to the rain
Slapping on the ground?
 
Ever followed a butterfly's erratic flight
Or gazed at the sun into the fading night?
You better slow down
Don't dance so fast
Time is short
The music won't last
 
Do you run through each
Day on the fly?
When you ask "How are you?"
Do you hear the reply?
 
When the day is done,
Do you lie in your bed
With the next hundred chores
Running through your head?
 
You'd better slow down
Don't dance so fast
Time is short
The music won't last
 
Ever told your child,
We'll do it tomorrow
And in your haste,
Not see his sorrow?
 
Ever lost touch,
Let a good friendship die
Cause you never had time
To call and say Hi?
 
You'd better slow down
Don't dance so fast
Time is short
The music won't last
 
When you run so fast to get somewhere
You miss half the fun of getting there.
When you worry and hurry through your day,
It's like an unopened gift
Thrown away
 
Life is not a race
Do take it slower
Hear the music
Before the song is over.

Renee M's June 7 reply to Ed's May 30, 1999 - Hi Ed, I have had my share of problems with SSD. You are right, there is no rhyme or reason to the SSD process. As far as the 6 month waiting period goes, that begins from the date SS determines that you were disabled. That date may or may not be the same as your actual disability date. If SS determines your disability date to be January of 1998, by the time you get the decision from SS, your waiting time will be done and benefits will begin the next month. You usually get a separate letter regarding money; At least I did. If SS determines a later date for your disability, then it will be 6 months from that date before you get payments. I applied for SSD in August of 1994 after being disabled since March of 1994. I had to go through the whole process, including a hearing. In May of 1996, I finally received the letter saying I would get SSD. SS did go back to March of 1994. So by the time I got SSD, the waiting period was past and I got benefits in June of 1996. I also qualified for Medicare in August of 1996, since all that time had passed. Good luck. Renee M. Auntonay@aol.com


Renee M's June 7 reply to Kim S' June 2, 1999 - Hi Kim, As far as salt substitutes goes, I don't use them. I have been on a restricted salt program for 5 years. I find the salt substitutes don't really taste like salt and they don't even taste good. I have done a lot of trial and error with spices that have produced some tasty substitutes for salt. When you eliminate salt from a dish, you need to add 2-3 times as much spices to get a good flavor. I think that's why so many commercial salt-free products taste so bad! They just take out the salt and don't add anything else for flavor.
     On your corn, you might try pepper and garlic powder, just a little at first, then adjust it to your taste. It's not the same as salt but I find it tasty with the butter substitute. If you don't like garlic, try some green herbs instead. It's a matter of trying different herbs and spices to see which ones give you a flavor you like. Even if it doesn't taste like salt, as long as it tastes good, you'll enjoy your food more.
     My Dad, on the other hand, who has severe CHF, can't do without his salt substitute. If you like the salt substitutes and they don't interfere with your medications, there's no reason you can't use them occasionally. Whatever works for you to stay away from the salt is best. Have a great summer. Renee M. Auntonay@aol.com


Jack, June 7, 1999 - Hi, You've probably all found that salt substitutes may be worse for you than salt but there is a substitute out there that's okay for everybody. Durkee has what they call "sour salt." It's probably available in other brands too. It is nothing but citric acid crystals and it works great. Jack. maddjak@hotmail.com


Doris R's June 7 reply to Claudia S' June 7, 1999 - Hello Claudia, I was diagnosed in August of 1998 with Idiopathic DCM/CHF with an EF of 10%. I am 47 years old and I have a 4 year old daughter. I was told I was a candidate for heart transplant. However, my arteries and veins are as clear as can be. Upon hearing about transplant, I began to pray for complete and total recovery. God is wonderful and powerful. At my appointments, my doctor put off referring me to Loma Linda by 3 months. I am being treated with 25mg Coreg, 2.5mg Vasotec, 6.5mg nitroglycerine caps, and most recently (less than a month) 30mg CoQ10 - all twice a day. I also take K-Dur, Coumadin, and Lasix once a day. I have been on the maximum dose of Coreg for 6 months. I will see my doctor June 14 to discuss my echo. I will learn then if my EF has improved. I feel more energy since the CoQ10. I am told if my EF improves just to 20%, then it is a victory. Frankly, I was hoping for 50% or better but I have also learned here at Jon's Place that it is not your EF, it's how you feel! I have my good days and bad days. My 4 year old will start school in September. I'll have a desperately needed 6 hour break from her. I hope I have been of some use to you. E-mail me anytime. Love, Doris. RoughGoing@aol.com


Doris R's June 7 reply to Sammie's June 7, 1999 - Hi Sammie, Fresh red grapes have the same properties as red wine, and are good for the heart. That's something the wine companies don't advertise. I just wanted you to know. Love, Doris. RoughGoing@aol.com


Tandy K, June 7, 1999 - Hello All, There has been much talk of lightheadedness going around. Does this make you stumble and fall often? Brandt, my 16 month old with DCM/CHF falls a lot! Kids this age I know aren't real sure-footed but he sometimes walks like he is dizzy or off balance. He pretty much stays looking like the child abuse prevention poster child with all the bruises (nearly always head or face). Maybe he's just a little more clumsy than most but it had me wondering. Thanks and God bless. Tandy K, mom to 4 boys. kephart@crosswind.net


Rick M, June 7, 1999 - Hi, I'm with Renee M and Jack when it comes to the avoidance of salt, which I have often called, "The Most Important Action a CHFer Can Do For Himself." My sweet wife doesn't even have it in the house but boy, do we have herbs and spices! I have found that dill is extremely good on bland things like baked potatoes, along with chives and sour cream. Try green vegetables like spinach and green beans with olive oil and balsamic vinegar. You have to get some sharpness into your food or you will miss the salt so much we won't be hearing from you anymore. Jack won't agree but hot peppers and Datil Pepper sauces are very good accents to many foods. rearadml@iu.net


Phyllis A's June 7 reply to Joy R's June 7, 1999 - Hi Joy, I am also having tingling in my extremities, especially my fingers and hands. I also attributed it to my meds. I will see my cardiologist June 14th and will let him know. Thanks for the info on your post, it enlightened me. Phyllis. phylcasurv@msn.com


Jennifer's June 8 reply to Sharon J W's June 7, 1999 - Hi, Metoprolol? It's a beta-blocker. I can only take a fourth of one once a day. Jennifer. jenniferlbutler@hotmail.com


Robert A's June 8 reply to Tom S' June 7, 1999 - Hi Tom, If you are disabled here in Texas you qualify for a reduction in city, county and school taxes on your home. All that is required is proof of disability from your doctor. The tax reduction depends on the amount of disability and the tax entity. My taxes were reduced by about 80% this year. The tax office even sent a check for the previous year when I became disabled. Robert A. Ralley0822@msn.com


Tom S, June 8, 1999 - Hi, I got a kick out of the EKG that was likened to Bill Clinton's polygraph that appeared in 6/7/99 posts. I got a bigger kick out of my cardiologist today. During my six month checkup, he asked me the usual how was I feeling question, and my response was that I am fatigued most of the time. I told him I was particularly falling down fatigued after trying to do any amount of physical activity or work. His answer was that a heart condition won't cause you to feel fatigued. Boy, that sure is a surprise to me. Please tell me my doctor went to a legitimate medical school and didn't spend all those years in residency to become the quack I now perceive him to be. Give me a break, most medical texts define the classic symptoms of CHF as including fatigue. Help me, I really think this guy (doctor?) is trying to kill me with laughter. biggerbhoy@hotmail.com


Linda O's June 8 reply to Jon's June 7, 1999 - Hi, Thank you for your stomach info. Did you go to your cardiologist or just try all these things on your own? Have you started back on them and are you still stomach pain free? No need to look up anything. Linda O. norvalo@clarinda.heartland.net


Jon's June 8 reply to Linda O's June 8, 1999 - Hi Linda, I took all those steps on my own but informed my cardiologist of the exercise, meds changes. I am lucky because my CHF doc is an avid WWW user and I can e-mail him changes and he writes back each time so I know he gets the information. He is trying to take his whole CHF clinic online. I have not re-changed any of those things yet and my stomach is doing well. Jon.


Al M's June 8 reply to Pat D's June 4, 1999 - Hi Pat, Your SS Medicare question is a good one. Like you, I am on Medicare and it does not pay prescriptions. However the person you spoke with is partially correct. You have 6 months to take a supplemental plan from the date you first become elegible, but you can also do it on the anniversary date of when you became eligible. As to prescription drugs, if anyone knows of that I sure would like to learn but the only thing I know that is available is an HMO-like Medicare plan. You usually have to pay at least a deductible for prescriptions, maybe a higher premium - but - and this is the big one, you have to live in an area where they are available. There is not one in the county in which I live but there is 180 miles from here where I go for quarterly checkups. However, I cannot join that one because I do not live in that county, ergo, not available.
     Also, to echo Jon's earlier comment, if your Medicare HMO dumps you, as has happened in many locations, another company that offers Medicare supplements has to take you if you apply. That avoids the pre-existing condition business and gives continuous coverage to all. Not all insurance companies are created equally. AARP will take anyone anytime for supplemental and no pre-existing conditions. However, their premiums are very, very high. Others will accept you for non-pre-existing conditions immediately but you have to wait 6 months to be covered for pre-existing conditions, but their premiums are much lower.
     In my case, AARP at my age would take me day one for $126 per month on supplemental plan. Another company, USAA, would take me day one for everything except heart related. For that I had to wait 6 months, then they would take me no problem, with a premium of $45 per month. I elected to wait the 6 months. My suggestion, especially if you are being dropped, is to start calling other companies and finding out what your options are - now. The type of plan you are on is identical. By that I mean that if you get Plan A it will pay for the same as another Plan A. The only difference is premium and that is based on pre-existing condition and claim experience of that company. It is a thorny problem and one that should be addressed at the national level but, alas, it will mostly likely be put off yet again. Stay healthy and keep slugging. Al M. ajmiii@web-access.net
 
Jon's Note: Medscape has some interesting discussion online about these issues.


Christine D, June 10, 1999 - Hi, I have been out of touch for a while; no excuse, just the graduations from high school kept me busy. I also have CHF and have a 53% EF. I am on 25mg Cozaar twice a day and one tab Mevecor a day with a change in my nitro patch since I was having skin reactions. I looked like a cheeta so my doctor said I could take a time release capsule by mouth. It seems to give me a fuzzy feeling and seems to drop my blood pressure further. I don't have high blood pressure. So I am taking it easy, trying to adjust to it. I still go for my walks, about one or more, which is very refreshing and gives me more energy. It also helps me with my blood sugar control (I am IDD diabetic).
     I am more into herbal and alternative medicine than conventionl drugs. I have been taking cayenne pepper with Hawthorn, garlic and onion. I started out slowly and it sure does me a lot of good. I feel I can walk more without angina and it has helped the cramps in my legs from walking, related to being diabetic. I have now introduced 250mg L-Carnitine tartrate. I worked my way up from one 250mg cap to 3 right now. I will go to 4 caps a day. I take it with CoQ10. It is supposed to work with it well. Well, I cannot explain it but I am overall feeling better and I have lost weight from 184 to 169 and it does not make me feel sick. Of course to all of you who write on the board, I must impress on you the importance in diet. I shouldn't say diet, but rather life style. I have been diabetic 21 years and if I had been eating all the junk food, so to speak, I would not be around to write you. I attribute this to my daughter, who was a vegetarian from age 6 and still is, and is very healthy. I am very careful what I put into my mouth. I mostly stirfry my foods in water and to add a little taste, I sprinkle it with Braggs amino acids. I love the stuff but the key is moderation.
     I have now been reading that I should introduce some protein into my diet because your body needs it when you get older. I am 49 years old. Well, I have started to intoduce some fish and lamb, and I find it helps my blood sugars. It is very difficult but I have seen major difference. The L-Carnitine tartrate is not supposed to be good for your heart but helps you lose weight. I have tried to lose weight for almost 25 years of my life but after taking the above, it has finally worked. The most important thing is if you want to try this, is to speak with your doctor first. My doctors are in agreement that if it helps me, I should try it out, but slowly. It is surprising now that some MDs concur with alternative and herbal treatments because they themselves have had feedback from their patients.
     Take care, folks. Aloha and do what is best for you, it is your body and you take control. Chris D. Chrisd1950@aol.com


Pat L's June 10 reply to Tom S' June 8, 1999 - Hi Tom, My former cardiodoc said to me last November, "Well, I don't think your CHF is causing the shortness of breath. It must be your lungs." Today is my first day without any Coreg since May of 1997. I have been titrating down from 25mg twice a day to 12.5, then 12.5mg once a day, and now to no Coreg for 2 weeks. My new doc will see me to check my heart rate. Just my luck, I live in the great Northeast, where we hit 95° yesterday, with about 95% humidity so I can't breathe anyway! Pat. patlat@yahoo.com


Lou's June 10 reply to Sharon J W's June 7, 1999 - Hi, Could the name of the medication be Metoprolol? By the way, I am more than willing to help in any way I can with anyone on WebTV. chipalini@webtv.net


Bill D's June 10 reply to Al M's June 8, 1999 - Hi Al, There is a safer gambler's way to buy health insurance. When you find you are faced with the option of buying, one policy that costs $45 a month but has a 6-month rider for pre-existing conditions and another policy for $126 a month that covers you right away, buy both! If nothing happens for 6 months, you win. You drop the expensive policy after only paying 5 months. The 30 day grace period will cover the sixth. You keep paying the "cheap" policy. You only "lost" $630. Fortunately, you won a much bigger gamble; Had you lost, you might have faced a $100,000 medical bill! May the force stay on your side. <g> Bill D. billdog@gate.net


Della R's June 10 reply to Jon's June 7, 1999 - Now Jon, I know you must realize how good it is for the heart and soul to have a good laugh and I am here to tell you that I really loved "horse puckey", never having heard that expression until your post. I have already had several good laughs just thinking of it. I know, I know, this is a weird sense of humor, can't help myself! Tomorrow, when I think of it, I will also laugh. Thanks!
     On that note, I read this in a magazine, "Just 100 laughs will boost your heart rate and give you an aerobic workout equal to that of a 10-minute session on a rowing machine." So says William F. Fry, a professor emeritus at Stanford University School of Medicine, who performed the calculations on himself. It's also reported that adults laugh an average of 15 times a day whereas a pre-schooler laughs an average of 400 times. Keep lookin' on the bright side and take care. dellerdo@inw.net


LeeAnn D's June 10 reply to Sammie's June 7, 1999 - Hi everyone, Sammie, When I was first diagnosed about a year ago, I was in Korea and my EF was 8. Two weeks later I flew home to Phoenix and the two flights and layover of 2 hours turned out to be almost 24 hours. My physician recommended oxygen on the plane, which had to be ordered ahead of time because typically they don't carry that much. I probably used it for only about 2 hours, after I'd been in the air for maybe 10 hours. It was worth it even if it was just in case. I also get migraines but normally only maybe 1 or 2 a year. For about the first 3 to 4 months after being diagnosed and starting all the meds I was constantly getting some really bad headaches. They have definitely subsided but seem to come back if I get off schedule, like eat breakfast too late, take meds without food or late, or something. I hope this helps. Good luck. LeeAnn. ddavis1057@aol.com


LeeAnn D's June 10 reply to Claudia's June 7, 1999 - Hi Claudia, I was told when diagnosed, that my heart was more than twice its size. Initially when I was hospitalized, it went down but over the next year steadily increased about 0.25cm each appointment. That is, until April (my first annual visit), when it had dramatically improved and is now only slightly enlarged. The doctors credit Coreg which I've been on about 10 months. I also credit CoQ10 and all the prayers I get! It took me about a week each time my Coreg was raised to get used to the dizziness but you do adjust to it. Just make sure you take it with a meal. I read in one of the pharmaceutical pamphlets that its peak time is about 7 hours after you take it so if you take it at breakfast and dinner, make sure there's more than 7 hours in between. A lot of our meds make us dizzy and sometimes spacing them out helps. I take my Lasix right when I get up, then Coreg and potassium later when I eat breakfast and dinner, and my ACE inhibitor at night before bed. Check with your doc, though. By the way, a couple of docs I've seen said my heart would never shrink, but it did! LeeAnn, age 38, EF now 30. ddavis1057@aol.com


Amelia, June 10, 1999 - Hi, I was diagnosed with cardiomyopathy in December of l998 with an EF of 35. My brother has now been diagnosed with the same thing though his EF is higher than mine. My father also had CHF but was never formally diagnosed with a low EF. I have been feeling listless lately. I am on no medicine other than Mevacor for hypercholesteremia. Any ideas? arlewis@uabmc.edu.com


Jack, June 10, 1999 - Hi, This is an angry post but I need to be angry and so do you all. Get all of your medical records including your doctor's commentaries. I have found that my last doctor is a liar, and it is all documented. He is actually so stupid that he tells me one thing and expects that I can't read the report that spells it out in black and white, that what he is saying is total garbage.
     Example: My MRI came back and showed that there were metallic objects in my abdominal wall. There are several reports speaking about them. The doctor examined the MRI films and declared that the reports were wrong. I tried to get copies of the MRI films but radiology informed me that my doctor never returned them. Radiology asked him what happened to them and he said he'd look into it. When I asked him about it, he claimed he had never heard anything about them being missing. Hey, when the facts disagree with you, get rid of the evidence. I have lots of documentation because of the medical records that show he has lied about many reports. As a matter of fact, I've got so much documentation I'm thinking of getting a lawyer and seeing if I can be instrumental in ridding the medical community of this guy. Get copies of your records and read them! Jack. maddjak@hotmail.com


Doug K's June 10 reply to Tom S' June 8, 1999 - Hi Tom, I have a feeling that you will be getting many replies to your doctor's statement about fatigue not being heart related. You didn't say how long he has been your doctor, or how long he has been a doctor. Hopefully, his comment was made just to keep you from worrying about your CHF but sometimes their comments are just so ridiculous that I think they just want to see what our response is. The only other reason for a doctor making such a dumb statement would warrant looking for a new doc. Hopefully, you won't have to go to that extreme but let him know that his answer didn't make any sense to you (and us) and start looking for a possible new doctor in case you decide to switch. Good luck to ya, been there myself. dgknuth@earthlink.net


Sara's June 10 reply to Sammie's June 7, 1999 - Hi Sammie, My doctor's nurse told me that a PA, a practitioner, has had 4 years med school and some or all of an internship but they never continued their training and therefore never got a medical degree.
     Tom S, regarding property tax, here in Maryland your tax will be reduced depending on income and assets. I don't know of any county tax reduced because of disability. Regarding Medicare, medigap and HMOs, when you accept Medicare you have 6 months to choose a medigap or HMO. Once you are a member then you can change, like from an HMO to medigap or vice versa. There usually is not a waiting period once you have made a choice within the 6 months of Medicare. Medigap is a private insurance and you can go to any doctor any time without referrals and will cost from $50 to $170 a month. An HMO will let you choose from their list of doctors and you need a referral to go to specialists. The cost is what Social Security takes out plus co-payments for office visits, meds; $5-$10 for prescriptions and $15-$20 for office visits. Remember that all HMOs and medigaps are controlled by Medicare. If Medicare does not approve, the HMO or medigap will not pay. sunny20853@aol.com


Phyllis W, June 10, 1999 - Hi everyone, I hope it not as hot and humid where everyone is. I have a question concerning the heat and humidity. It has been really bad here for over a week. I was out in it a couple of times for a short period. Now I don't seem to feel like doing anything. I have more shortness of breath and very little energy, especially the longer it goes and the hotter it gets. Does anyone else have the same problems? pwatjen@vincennes.net


John Len, June 10, 1999 - Hi, Robert A is right, I haven't paid any real estate tax in about 8 years here in Virginia because of the over-65 or Disability policy of my city. You have to apply yearly, though. Also in Virginia, we do not have to pay parking meters if we have a handicapped plate or decal on the car. John. a_lenny6@hotmail.com


Leland Y, June 10, 1999 - Hi, This CHF syndrome is strange. I have followed low sodium, low fat now for 3 months, since I was stricken with DCM on March 10, 1999. The low sodium diet is working very well. Low fat intake is not hard to take. Low cholesterol is easy, since I like veggies and rice anyway but for the life of me, I cannot figure out why my cholesterol has shot up to 300, and only on a diet of NMT 4oz of meal a week. I usually have fish or chicken. As a matter of fact, my transplant cardiologist says that my albumin level shows that I have protein deficient diet, even with all the tofu and legumes I consume. Another aspect of this diet is that the hi carbohydrate diet - to make up for lost caloric intake from lack of meat and more veggies - has caused me to have high blood suger (100-120, fasting). The Coumadin clinic has asked me to watch my intake of leafy veggies because my Coumadin level still is not stablized yet, since March 20.
     Now, I am trying to step up my excercise to burn some of the carbohydrates up. I have not had a Coke, candy, sugar in my coffee and cereal, pancake syrup on waffles for over 2 weeks. It must be getting better since for now I am not as thirsty nor running to the potty as much. Has anyone else had this type of problem? My meds are lisinopril, potassium, digoxin, warfarin, CoQ10, furosemide (which may cause high blood sugar levels), carnitine, b-complex, therapeutic multivitamins, calcium and gingko. Of course, the above mentioned idiosyncrasies of CHF and diet and meds are only a minor problem to me. I just go with the flow. I am just sharing this for other CHFers. God bless everyone for posting. Leland. LLYee@surfside.net
 
Jon's Note: Sudden drop in exercise, especially if you were active before, may cause cholesterol to go sky high very quickly, regardless of diet


Jon, June 12, 1999 - Hi, I'm still here, just too tired to do much. Sorry about e-mails, I have some a week old I just haven't gotten to yet. My house persists in trying to fall apart one piece at a time and as most of you know, the joy of keeping a house in one piece on a low budget is no joy at all. <g> I am currently between waiting for some grout to set a bit so I can clean it up. I will try to update the forum later today. I gots the time, I just gots no energy. Jon.


Lynn D's June 12 reply to Phyllis' June 10, 1999 - Hi Phyllis, You are simply reacting to the heat and humidity. I live in Atlanta. It has been extremely hot here and we have been under a smog alert for people with heart and respiratory ailments for over a week. If you get too hot one day it will take you time to catch up over the next few days. Stay inside the air conditioning. Limit errands or ask for help. I stay inside from about 11am to 3pm. Hopefully we will all get some rain and relief in the next few days. Wear cool clothing, and stay cool. lynndaniel@mindspring.com


Linda O's June 12 reply to Phyllis' June 10, 1999 - Hi Phyllis, My family doctor told me stay inside if it is above 80 degrees and below 20 in the winter. We live in Iowa where our livelihood with corn and beans have to have the humidity. I wear a mask if the wind is too cold also. I have also heard not to take really hot showers nor get in a cold pool, it affects your arteries. I guess drinking ice water or steaming hot liquid could do the same? Linda O, age 59, EF 24. norvalo@clarinda.heartland.net


Joe D's June 12 reply to Phyllis A's June 7, 1999 - Hi, Regarding tingling in the extremities, I have had this since being diagnosed with DCM (EF 35-45) over five years ago. Mine isn't due to meds as I stopped taking all meds for a period and it didn't stop. Four cardiologists, 3 neurologists, 3 psychiatrists and a handful of miscellaneous practioners haven't been able to determine the cause of the tingling and numbness. Some of the MDs attribute it to stress but they can't find a cause of the stress and don't think I have a stress problem. Please post what your cardiologist says about your tingling symtoms. Krait008@aolcom


Karen K, June 12, 1999 - Hi All, I haven't posted in a long time but have kept up with reading all of the messages. Regarding the qualifications of a PA, my brother is a PA in the state of Washington. He is a 4-year college graduate with a degree in art. He was in the Coast Guard and was one of only 2 individuals chosen to attend Duke University for PA training. He does not have a medical degree and he did not attend medical school. His training covered a 2-year period and he did not do an internship. He is now retired from the Coast Guard and employed by a geriatrician. He also works for a family practice clinic. He is required to be tested periodically in order to renew his license as a PA. Also there is some continuing education involved. I think the training for PAs is pretty much the same nationwide but the extent of their ability to prescribe medication governed by the state in which they practice.
     I am doing well. I stopped my Lasix (on doctor's orders) 9 months ago and have had no fluid retention problems. I currently take 25mg Coreg twice a day and 25mg Capoten 3 times a day. Also I'm taking 30mg of CoQ10 twice a day. I'll return to my doctor in September for a yearly checkup. I am and have been for over a year walking on the treadmill on a daily basis. I do a mile and start out at 3.3mph increasing every 1/10th of a mile up to a speed of 4mph. Lately I've started adding some incline. I feel very fortunate. I have days when I am more tired than usual but I also know that my activity level is very high and sometimes I overdo it. Just an update. Karen K. karenk@muscanet.com


Cindy's June 12 reply to Phyllis' June 10, 1999 - Hi Phyllis, In regard to your question about reacting to extreme heat and humidity, I can vouch for feeling it too. We've had 90 degree-plus weather here in the Chicago area for over a week and I've found that the most I can tolerate outside is about an hour, and that's in the pool! Even in the shade, at my son's Little League game the other day, I began to feel unwell after about 1½ hours. This is my first summer with CHF, so I didn't quite know how I'd react, but I know my doctors cautioned against extreme cold, and I'm guessing the same goes for the opposite extreme. Try to stay cool! Cindy. CLeighMc@aol.com


Ginger, June 12, 1999 - Hiya's, I might miss a few chats this next week due to having a sick sister and may not be on much. So if any of you have any problems getting to chat or with the chat room and you can't get me, you can e-mail Tom W and he will help you. Stay well ya'll and cya at chat when I can. Hugs, Ginger. mystery@laker.net


Ben B's June 12 reply to Roman G's June 7, 1999 - Hi, I believe my doctor would say your EF is somewhere between 15% and 30%. I think EF can actually change that much over a day or so, and add onto that the inaccuracy. I have read various reliabilty estimates which put MUGA and cath as pretty close in accuracy, and more accurate than echo. I read somewhere that even in optimally imaged individuals, echo is completely inaccurate up to 18% of the time. I know they use changing radioactivity measurements for MUGA, and changing radioactivity plus pressure transducer measurements for cath, but I have no idea how they tell EF in an echo, except by looking at the blood in the ventricle and ball parking it. Does anybody know how they do it? I can't see anything in those echo screens. bdbrinkman@juno.com
 
Jon's Note: They use volume readings and equations. EF = Left Ventricle End Diastolic Volume - Left Ventricle End Systolic Volume x 100, divided by Left Ventricle End Diastolic Volume (I think)


Pat D's June 12 reply to Sammi's June 7, 1999 - Hi Sammi, My daughter is studying to be a PA (Physician's Assistant). It is a separate discipline from an MD, although the training is similar. She has received 2 years of pre-med education and now must complete 2 years of medical school in order to be a licensed PA. After that, she will intern in a hospital just as a doctor does but cannot practice on her own. A PA can do many of the same things an MD can but must work under their supervision. They can perform physicals, diagnose many illnesses and prescribe medication. My own medical situation is so complex with multiple diseases that my doctor will never turn me over to a PA but for normal people (whatever that means) they may be quite adequate and of course there is always an MD reviewing their work and decisions. I hope this answers your question in that regard. Pat. patj98@yahoo.com


LeeAnn D's June 12 reply to Jack's June 10, 1999 - Hi Jack, How on earth did you get metallic objects in your abdominal wall? My doc has lied to me too. It made me upset. It was just a little lie - telling me my EF was higher than it was - but I just thought it was so condescending and my opinion of him really dropped. What can this do to you? I hope you're ok. LeeAnn, age 38. ddavis1057@aol.com


LeeAnn D, June 12, 1999 - Hey all you CHF moms, I just found something that will make you happy as a clam and give you more energy. Have a maid come in and clean your house! My husband just had this done as a gift (tax refund) and I can't believe how great I've felt for the last 3 days. My tubs and tile sparkle, my fans, cupboards, appliances, floors - everything I never want to use my limited energy doing myself got done. It was a real pick-me-up. Anyway, just thought I'd pass along my tip for the week. ddavis1057@aol.com


Susie T, June 12, 1999 - Hi, I am glad I found this site, it makes me feel better to know that maybe I'm not losing my mind, that I kept trying to pretend all of the pain and breathing problems were in my head, but it doesn't get any better ignoring it either. I get dobutamine treatments usually once a week. I think sometimes it takes more out of me than they realize but they claim they help. Yet I'm not even sure what they are for or if they are even that good for you. staylo26@bellsouth.net


Joe Stevenson's June 12 reply to Fred's June 2, 1999 - Hi, I was diagnosed with CHF about a year ago and went through all the tests. I have little artery blockage and low cholesterol. It all stems from Scarlet Fever at age 5. I am currently taking 50mg Hyzaar, 12.5mg K-Dur and 20mg furosemide. I was feeling great until about a week ago when a health food store suggested I take Magnesium, 500mg with B-6. Now I am lightheaded and dizzy all the time. What am I doing wrong? By the way, my doctors misdiagnosed me for over 10 years and kept saying that my gasping for breath, fatigue and sweating was either emphysema or bronchitis. They completely ignored my swollen ankles, legs, and stomach. It actually took a dietician to recognize all the symptoms. Any advice will be greatly appreciated. jes@stevensonlighting.com


John Len's June 12 reply to Jack's June 10, 1999 - Hi Jack, One thing you have to take into account is past surgeries. My heart x-rays always show metal because of my past bypasses. They used metal staples to block off blood vessals in the bypassed arteries and veins used for the bypasses. My heart area always lights up like a Christmas tree on x-rays from these staples. John. a_len6@hotmail.com


Rosamond Sanderson's June 12 reply to Phyllis' June 10, 1999 - Hi Phyllis, Welcome to the club. I have had trouble adjusting to hot weather most of my life, but with the advent of CHF, I have been told by my cardiologist and reminded each time by his nurse, not to go out because of the heat and humidity. I bought a treadmill so I could continue walking and have a tendency to remain in a comfortably air-conditioned room from June to October! I do a lot of reading for obvious reasons now and found the perfect verb for people like us: "aestivate," the opposite of hibernate, spending the summer in a state of dormancy! O Canada, send Philadelphia some Canadian air! RWarriston@aol.com


Robert Farish's June 12 reply to Tandy K's June 7, 1999 - Hi, First of all to Tandy concerning the lightheadedness and stumbling, I've noticed that if I stand too quickly or over-exert myself, that I feel lightheaded and so forth. So I imagine that a lot of us here experience the same thing.
     Phyllis, last week here in North Carolina, it was 101° on the lighted thermometer at the bank. Normally I can make it through the day being in the air conditioning but I decided that one of the heads of my irrigation system at my home needed replacing. Well, after about 15 minutes working on it (and my wife didn't know that I was outside), she ran me inside and finished putting on the nozzle. I've had to lay down for exhaustion for several hours during the day since last week. I am getting caught back up slowly but I can tell you and I know that there are many people on this board who were very active before taking on CHF or DCM or both. One thing is for sure and I keep telling my wife that it is so hard to let go and not do certain things that you were able to do in the past. I'm trying to learn and I hope others out there are doing the same.
     In adding to the stomach problem topic that has been mentioned earlier, I have noticed that since I overdid it that day, sometimes I feel sharp pains that run from my chest down into my stomach. They don't last long but hurt every once in awhile. I'll take a Valium and ibuprofen and it will subside. lfwcor@washingtonnc.com


Robert Farish, June 12, 1999 - lfwcor@washingtonnc.com
 
How to Be Happy
 
Don't ever stop dreaming your dreams;
they're a very essential part of you.
Do whatever you can to make them a
reality by the course you take,
the plans you make,
and all the things you do.
Don't dwell on past mistakes
leave yesterday behind you
along with any of its problems, worries, and doubts.
Do realize you can't change the past,
but just ahead is the future
and you can do something about that.
Don't try to accomplish everything at once;
life can be difficult enough
without adding frustration to the list.
Do travel one step at a time
and reach for one goal at a time.
That's the way to find out what real accomplishment is.
Don't be afraid to do the impossible,
even if others don't think you'll succeed.
Do remember that history is filled with
incredible accomplishments of those who
were foolish enough to believe.
Don't forget that there are so many
things that are wonderful, rare,
and unique about you.
And do remember that if you can search within
and find a smile
that smile will always be a reflection
of the way people feel about you!


Bill D's June 12 reply to Karen K's June 12, 1999 - Hi Karen, You are another candidate for Wonder Woman! If I just look crosseyed at a treadmill, I get out of breath. Four miles an hour and up an incline yet! Caesar's legions marched 20 miles a day but they wouldn't have been able to catch you! <g> Glad you're doing so well. Bill D. billdog@gate.net


Jack's June 12 reply to LeeAnn D's June 12, 1999 - Hey LeeAnn, There are no metallic objects. What the MRI and ultrasound show is the hard mass that has been growing. Somebody suggested that they were metal clips put in after the biopsy and that just stuck. It's a case of what they can see on film disagreeing with their opinion so they disregard the film because their opinion is more important. Whatever it is, it is dense enough to appear like metal on the MRI. The x-rays showed that it wasn't metal but there was something abnormal near my breastbone. The ultrasound guy called them shadows and referencing the earlier report of metal clips, assumed that's what they were. Radiology recommended a CT scan to check it out further but the doctor told me the ultrasound showed everything to be normal and that he wasn't going to see me anymore.
     Two extra doctors were in for one of the examinations and they were both able to feel what I was talking about. I wonder why - it's at least 5 inches wide and 8 inches long. When they both agreed that they could feel it, it was strange the main doctor told them they were wrong and all they were feeling was normal fat. He's the boss! Again, watch 'em. They get their money whether they are competent or not. maddjak@hotmail.com


John Len, June 13, 1999 - Hi, One note on Al M's post of June 8. Medicare will pay for diabetic test equipment. That is, blood glucose meter, test strips and finger sticks. They will also pay for special custom made shoes for a diabetic with neuropathy of the feet. a_lenny6@hotmail.com


Dee K, June 13, 1999 - Hi, I have been told that I have CHF and COPD. Help! I'm overwhelmed and so is my husband. The CHF has come and gone over the past 10 or so years while I was treated for MVP. Even as a child I was told I had chronic bronchitis but now one doctor said that it wasn't curable, nor kept me on meds after the symptoms went away. Now at the age of 65 after a bout with COPD, I had a young doctor from the Texas Tech School of Medicine who happened to visit me in the hospital tell me how bad off I really am. I talked with my doctors, one heart, one lung specialist, and they admitted that no one had told me the truth. Now with 30% heart function, and lung activity so bad I'm on oxygen 24/7, where do I go from here? Thanks for being here, if for no other reason, but to have someone who understands where I'm coming from. DK1992@aol.com


Lori's June 13 reply to Phyllis A's June 7, 1999 - Hello, I just read in a medical manual that kidney trouble causes tingling in the extremities. Does anyone think this is related to CHF - that meds such as Lasix could be causing problems to the kidneys? My grandmother gets this tingling when she has to urinate. ericlori@netins.net
 
Jon's Note: See the caregiver's side for more about Lori's grandmother


Jana B, June 13, 1999 - Hi, It was a PA that diagnosed me after 6 medical doctors didn't! Some of the PAs have more experience than the doctors. They usually have been at it longer, especially if you are treated in a learning hospital or clinic. I have a question for you all. My blood pressure was out of control so they upped my Cozaar - doubled it. I am on Coreg, Cozaar, Lanoxin, Lasix, K-dur and Zestril. I took my BP today and it was 129/39 and my pulse was 59. My pulse has always been in the 120s resting, tacycardia. My question is, how about this BP, isn't it kind of low? I felt dizzy today and I am never dizzy but it passed. I had a graduation party here with 60 people and I did all the cooking. Shouldn't that have at least raised my blood pressure? How low is too low, when should I get concerned? JByers4u@aol.com


Gatha E's June 13 reply to LeeAnn D's June 12, 1999 - Hi LeeAnn, Another great way I have discovered to take some stress off and feel good is to be good to yourself and get a massage. I had heard that this was great for poor circulation, pain and tingling and I am living proof that it works. It's only been 3 days so I will have to see how long it lasts. I had an hour massage and did not get sore anywhere. They have to ask health questions and are licensed in my state of Texas. I am going to try the maid idea next! jell859855@aol.com


Joy R's June 13 reply to Susie T's June 12, 1999 - Hi Susie, I wanted to respond to your post since I also use dobutamine but I use it 5 days a week. It helps me immensely. Without it, it don't think I could survive. I am sorry you don't feel it is helping you. I think it is a little troublesome in the beginning before your body gets used to it. Without it, I have chest pressure (like someone is sitting on my chest) and a lot of shortness of breath that keeps getting worse until I start infusing again. I also sent you an e-mail. I hope you will get some improvement in your condition. I know how hard it is to live with this. Good luck to you. Joy. wapalaremi@home.com


Ruth P, June 13, 1999 - Hi all, Rosamond, I am up here in Montreal, Canada where it is in the 90s with high humidity. It was 90 in church this morning. After church we had our Sunday school picnic and everyone just sat under the trees and we cancelled the usual games. The ice cream sure tasted good, though.
     Jack, it's good to hear from you but I was worried about those so called metal objects. Now I'm more worried about what the 2 docs felt. You do have to be alert. Maybe it's time to get another first line doc. Everyone try to stay cool. Ruth P. rpow@total.net


John Len, June 13, 1999 - Hi, One of the most common causes of tingling in the extremities is neuropathy caused by diabetes, John. a_lenny6@hotmail.com


Helen O's June 13 reply to Phyllis W's June 10, 1999 - Hi, I understand about the heat, at least. I live in Phoenix, Arizona and our temperature today was 108°. Ugghhhh! I noticed about 3 weeks ago a lack of engery whenever I went outside. I have always had engery problems in the summer but it is more pronounced this summer. I try to stay indoors during the hottest part of the day but I am taking classes this summer and still trying to keep up my exercise. About the hot showers, yes they do affect your arteries by enlarging them. The cold shrinks them. Since the weather has gotten hot, I do get in the pool everyday. I have incorporated this into my daily exercise. I either swim laps (usually 3 before I get lightheaded) or jog in place in the water. woohoo@imap4.asu.edu


Tom S' June 15 reply to Lori's June 13, 1999 - Hi, Perhaps it is the drugs themselves that are producing the tingling and numbness side effects until the body adjusts to them. I have been on Lasix, Coumadin, Coreg, K-Dur (potassium), Lanoxin and Lotensin for nearly 4 years and have suffered through the tingling and numbness that so many complain about who are also on a similar drug regimen. All those particular effects have disappeared except for being lightheaded. So my guess would be that particular cadre of pharmaceuticals does induce certain side effects that we all seem to have in common. By the way, my cardiodoc has removed Coumadin from my life, and the annoying monthly and bi-monthly PTs, and I have removed myself from the annoying Lotensin. biggerbhoy@hotmail.com


Bill D's June 15 reply to Joe S' June 12, 1999 - Hi Joe, If I were you, I'd stop the magnesium. When I asked my cardiologist about supplements and CoQ10 he said, "okay, but don't take big doses of magnesium. I've heard some stories about it." I never found out what they were! I have a bottle of them that's 3 years old with just one pill gone. <g> Bill D. billdog@gate.net


Jon's June 15 reply to Bill D's June 15, 1999 - Hi Bill, The only side effect I have heard of is diarrhea. That's why Milk of Magnesia works, after all. <g> I have taken between 400mg and 1200mg a day of magnesium for well over a year with no ill effects and it seems to have completely stopped my PVCs (or they went away at the same time and never came back). If a diuretic is draining your potassium, it is almost certainly draining you of magnesium also. It takes 6 months to build up body "stores" of magnesium in your muscles. Intravenous magnesium is used in hospitals for stopping certain kinds of arrhythmia. Currently, magnesium isn't shown in my bio meds but that's only due to lack of funds. <g> See Nutrient Stew for more on magnesium. Jon.


Pat ?, June 15, 1999 - Hi, I would like any info regarding my impending bypass operation resulting from CHF. dand8460@aol.com


Phyllis A's June 15 reply to Lori's June 7, 1999 - Hi Lori, Thanks for info and e-mail. I pray that it is not affecting my kidneys because my dad is on dialysis for 6 years. I went to the doc today and my cardiologist increased my Verapamil from 240mg to 360mg twice a day. My Lasix is still 80mg twice a day but no more zaroxolyn. It depletes my potassium and magnesium, and the cardiologist is concerned about my kidneys, but he said if this doesn't work, I may have a pacemaker put in. If it gives me more freedom to walk and elevate this severe shortness of breath I am all for it. Anyone with a pacemaker, please e-mail me and let me know how well it works for you. Thanks. phylcasurv@msn.com


Will W, June 15, 1999 - Hi everybody, It's been a bit since I posted, but a bit of encouragment never hurt! I have a friend, part of our support group, who has been in the hospital for almost 14 months waiting for a heart transplant. We just received word this evening he finally received a transplant at 6:30 this morning and is doing well. There is always hope, so keep smiling and keep you faith in God. Good luck and good health to all. Will W. heart266@tco.net


Claudia S, June 15, 1999 - Hi, I have a question. When I saw my cardiologist, the first and only time so far, I asked him if profuse sweating was a symptom of cardiomyopathy or CHF. I asked because sweating had been a big part of my life for nearly 5 years. The doctor said no. It seems that I have read a few people make reference to this, and if my cardiologist does not know this, maybe I should have a different doctor? If sweating is a symptom, does anyone know why? For me, I would break out in a head sweat, exerting any energy, or stressful situation. Going on the unknown, does anyone know what medications might help this problem? Someone online did tell me to hang in there, it does get better, so I am hopeful. What I would like is to understand why it happens. I am so glad to have found this site and all the wonderful, helpful people. I hope everyone is having good days. Claudia. CMSchm@aol.com


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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