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

Jon's 2-16 reply to Felix O's 2-12     cures, meds, thanks, e-mail addresses & more
 
Tom S 2-16     wireless keyboards & more
 
Paul M's 2-16 reply to Ben B's 2-15     starting Coreg, heart rate
 
Paul M 2-16     healed heart, kidney problems & more
 
Bill D's 2-16 reply to Pat E's 2-15     lots of company, CHF info & more
 
Bill D's 2-16 reply to Tina's 2-15     heart weirdness
 
Bill D's 2-16 reply to Ben B's 2-15     anxiety-relieving drugs experience
 
Bill D's 2-16 reply to Jay Q's 2-15     stunt peeing & more
 
John Len 2-16     TMLR study & angina relief
 
Paul M's 2-16 reply to Jay Q's 2-15     bathroom goin's on
 
LeeAnn D's 2-16 reply to Tom S' 2-15     turning yellow, hot tubs & more
 
LeeAnn D's 2-16 reply to Chuck L's 2-15     you are still you & more
 
Ed ? 2-16     SSD came through & more
 
Gwen S 2-16     awful periods, Coreg dose & start-up
 
Bill K 2-16     intro
 
Pat L 2-17     doctor dissatisfaction sets in - need help
 
Lee R's 2-17 reply to Mercer Sherman's 2-15     welcome, look around - lots of help here
 
Lee R's 2-17 reply to Chuck Lewis' 2-15     don't blame yourself, jump in & learn
 
Lee R's 2-17 reply to Arlene B's 2-15     love some recipes, welcome, info & more
 
Lee R's 2-17 reply to Pat E's 2-15     welcome, meds, exercise & more
 
Bill K's 2-17 reply to Ben B's 2-15     starting Coreg in different situations
 
Pat E 2-17     coping, state of mind
 
Cindy McCrackan 2-17     update, support, coping & more
 
Jon 2-17     seeking sender of bio with no name
 
Kay 2-17     thanks & have diabetes question
 
LeeAnn D 2-17     shades of yellow were harmless & more
 
LeeAnn D's 2-17 reply to Bill D's 2-12     low EFs and lifestyles
 
Mark E's 2-17 reply to Bill K's 2-16     different Versed experience & question
 
Jon's 2-17 reply to Ben B's 2-15     cardiac index
 
Tom S' 2-18 reply to LeeAnn D's 2-17     skin color & more
 
Jenny 2-18     medical terms & support group questions
 
Jon's 2-18 reply to Jenny's 2-18     support groups & medspeak
 
Trav 2-18     SSD & emotional state questions
 
Muriel 2-18     update
 
Chase 2-18     can Coreg sub for Cordarone?
 
Jon's 2-18 reply to Chase's 2-18     I hadn't heard of it - anyone?
 
Brenda H 2-18     Tina & LeeAnn D
 
Ginger's 2-18 reply to Chuck's 2-15     coping, loved ones & more
 
Jennifer R 2-18     update, second opinion & more
 
Pete E's 2-18 reply to Ben B's 2-15     Coreg start-up
 
Pete E's 2-18 reply to Brenda H's 2-13     hot tubs and heart longevity
 
Bill D's 2-19 reply to Jennifer B's 2-15     venous congestion
 
Ruthie A's 2-18 reply to Pat L's 2-17     procedure of changing doctors
 
Heather S' 2-19 reply to Bill D's 2-16     update, tests, questions & more
 
Sharon J W 2-19     visual disturbance questions
 
Jon's 2-19 reply to Sharon J W's 2-19     visual disturbance possibilities
 
Margie's 2-19 reply to Pat L's 2-17     chest pain, Coreg, update
 
Lisa H 2-19     now have diabetes too! questions
 
Phyllis 2-19     Coreg dose & heart rate questions
 
Pete's 2-19 reply to Tina's 2-15     feeling my heart beat strongly
 
Brenda H 2-19     hot tubs, hearts, & God
 
Jon 2-19     seek volunteer with a Web page
 
Pat E's 2-19 reply to Lisa H's 2-19     coping with diabetes & CHF
 
Deb L 2-19     intro, anyone else in this boat?
 
Rosamond Sanderson's 2-19 reply to Heather S' 2-19     having trouble e-mailing Heather
 
Mark S 2-19     intro, support groups & more
 
Ginger 2-19     multiple illness page
 
Jon 2-19     Web page offers & prayer request
 
Tina 2-20     low white cell count & more
 
Brenda H 2-20     beta-blockers & more
 
Ginger's 2-20 reply to Mark S' 2-19     understanding, support groups & more
 
Chuck N 2-20     work or Disability dilemma - seek advice
 
Jon 2-21     some questions from my own doc
 
Heather S' 2-21 reply to Rosamond S' 2-19     e-mail away! & more
 
Ben B's 2-21 reply to Chuck N's 2-20     Disability, working, jobs & more
 
Ben B's 2-21 reply to Tina's 2-19     white blood cell counts
 
Bill D's 2-21 reply to Trav's 2-18     depression, docs & more
 
Bill D 2-21     Mark & Rosamond, welcome
 
Bill D's 2-21 reply to Sharon J W's 2-19     vision disturbances & mini-strokes
 
Bill D's 2-21 reply to Chuck N's 2-20     doctors, education, SSD & more
 
Roger C's 2-21 reply to Brenda H's 2-20     a-fib can prevent Coreg use
 
Staci H's 2-21 reply to Brenda H's 2-20     my asthma prevents Coreg use & more
 
Ben B 2-22     typo
 
Sharon J W's 2-22 reply to Bill D's 2-21     vision disturbance, input & more
 
Robin W's 2-22 reply to Chuck N's 2-20     CHF, work, and Disability
 
Tom S' 2-22 reply to Sharon J W's 2-19     visual disturbances
 
Will W 2-22     update, transplant & more
 
Sigmund B 2-22     Url of interest
 
Dave A 2-22     drug therapy, caths, getting scared & more
 
Jon 2-22     prayer request
 
Julie S 2-22     intro
 
Mark S 2-22     posting, Disability news & more
 
Liz J 2-22     Nancy (CNAN) died
 
Linda O 2-23     to Gregg & Jon
 
Claire F's 2-23 reply to Ruthie A's 2-15     coping, swallowing, familial DCM & more
 
Candy's 2-23 reply to Chuck N's 2-20     work, Disability & more
 
Roz S' 2-23 reply to Ginger's 2-20     chat room thanks
 
Jon 2-23     update
 
Ginger's 2-24 reply to Roz S' 2-23     e-mail, chats & more
 
Al M 2-24     intro, drug trial & more
 
Mark S' 2-24 reply to Ginger's 2-20     other forum
 
Luc D 2-24     Nancy, chest pains & more
 
Terry 2-24     CHF & enlarged heart, seek others
 
Margie F 2-24     question for those with ICDs
 
Ginger 2-24     emergency contacts & multiple illnesses
 
Jon's 2-24 reply to Ginger's 2-24     emergency contacts & multiple illnesses
 
Keisha T 2-25     this site, coping & more
 
Unknown 2-25     dry eyes & heart meds question
 
Dede G 2-25     What is DCM?
 
Ginger 2-25     emergency contacts page
 
Brenda H 2-25     BP questions & more
 
Bill D's 2-25 reply to Terry's 2-24     CHF info
 
Bill D's 2-25 reply to Al M's 2-24     CHF & transplant info, questions & more
 
Carol O's 12-25 reply to Liz J's 2-22     remembering Nancy
 
Paul M's 2-25 reply to Terry's 2-24     CHF info, docs, meds & more
 
James L's 2-25 reply to Tina's 2-15     heart pounding possibility
 
Linda ? 2-25     pneumonia - prayer request
 
Heather S 2-27     Urls of possible interest
 
James L 2-27     chest pain & cramping questions
 
Al M 2-27     beta-blocker trial & more
 
Jon's 2-27 reply to Al M's 2-27     drug name question
 
Ben B's 2-27 reply to Brenda H's 2-25     BP terms and readings
 
Brenda H's 2-27 reply to Linda ?'s 2-25     coping!
 
Rick M's 2-27 reply to Brenda H's 2-25     BP readings, machines & more
 
Arlene B 2-27     recipes, addresses & pooters
 
Joy R 2-27     seek others on inotropes for CHF
 
Jon's 2-27 reply to Joy R's 2-27     for all Class 4 CHFers who can't get a transplant
 
Barb M 2-27     Debakey VAD on news show
 
Jon's 2-27 reply to Barb M's 2-27     Debakey VAD
 
Tina ? 2-27     just out of the hospital
 
Bill D's 2-27 reply to Unknown's 2-25     meds & side effects
 
Bill D's 2-27 reply to Keisha's 2-25     transplant teams, insurance & more
 
David ? 2-27     seek comments from Coreg users
 
Chuck N 2-27     thank you & more
 
John Rice 2-27     30, sick, and scared - seek insights
 
Linda ? 2-27     very large thank you & more
 
Howard ? 2-27     think I may have CHF, but,...
 
Don ? 2-27     do I still have CHF?
 
George M 2-27     update & thank you for info
 
Lynn D's 2-28 reply to James L's 2-27     chest pain possibility
 
Al ? 2-28     knees pain & meds question
 
Al M's 2-28 reply to Jon's 2-27     drug trial(s)
 
Jon's 2-28 reply to Al M's 2-28     drug trial(s)
 
Linda O's 2-28 reply to Linda ?'s 2-25     coping
 
Ben B 2-28     disabilty & job security question
 
Al M's 2-28 reply to Brenda H's 2-25     BP machines
 
Gus R's 2-28 reply to John Rice's 2-27     cardioversion, CHF, meds & more
 
Roz S' 2-28 reply to John Rice's 2-27     cardioversion, CHF & more
 
Joe's 2-28 reply to George M's 2-27     weightlifting & vitamin E
 
Jon's 2-28 reply to Joe's 2-28     weightlifting & vitamin E
 
Jay Q's 2-28 reply to Howard ?'s 2-27     enlarged hearts & docs
 
Liz J 2-28     thank you all & more
 
Jon 2-28     chat time info requested
 
Rick M 2-28     The Manual
 
Roger H's 2-28 reply to James L's 2-27     chest pain possibility
 
Steve 2-28     SSD problems
 
Bill D's 2-28 reply to David ?'s 2-27     Read The Manual & more
 
Nancy Williams 2-28     transplant experience & more
 
Joy R's 2-28 reply to David's 2-27     Coreg for CHF
 
Joy R's 2-28 reply to John R's 2-27     unfairness, coping & more
 
Helen ? 2-28     seek answers
 
Karen K's 2-28 reply to Don's 2-27     CHF, meds, coping & update
 
Virginia R's 2-28 reply to Al M's 2-27     doctor questions
 
Bill D's 2-28 reply to Don ?'s 2-27     CHF info, questions
 
Bill D's 2-28 reply to Howard ?'s 2-27     CHF info
 
Bill D's 2-28 reply to John Rice's 2-27     finding CHF info, coping & more
 
John Rice 2-28     more info, keeping busy & more
 
Roger C 2-28     update, Disability, & more
 
Al M's 2-28 reply to Steve ?'s 2-28     Disability conundrums & more


Jon's February 16 reply to Felix O's February 12, 1999 - Hi everyone, Posts are gonna be erratic for a while, since my sleep pattern is still screwed up and I ran into some major technical problems yesterday which ate up all my time - literally all night and more. I'm about to go to sleep now, so posts will go up, well, whenever,...
     Felix, I talked to my CHF cardiologist about your questions. He confirmed what I thought and also what another CHF cardiologist from the Cleveland Clinic had said. Yes, DCM can recur and often does. CHF is often the result. Staying on an ACE inhibitor at the very least, and possibly a beta-blocker as well, might be wise. Maintaining a low sodium diet is also a good idea, as is regular structured exercise. I want to stress that my doc has treated a lot of CHFers and has seen this scenario himself with some of them. In his opinion, it is possible that doctors who advise "former" CHFers to drop all meds don't have enough experience to know any better. So, if a doc says to drop all your meds and act normal, I would seek another opinion. If your doc seems too cautious to you, feel free to seek another opinion also but be careful not to let your desires interfere with your reality. DCM can recur. Of course, Doc Porter is the first to admit that there are lots of differing opinions out there in the medical community. Best of luck to you - I wish you many years of feeling good - no kidding.
     I am changing ISPs again. <g> I have put it off too long as it is. Earthlink's service overall has sunk into the toilet in my city and is nearly unusable now. I am spending over an hour a night fiddling with it trying to maintain a connection and I don't have the time or energy for that. It's Prodigy this time - we'll see how long this lasts. <G> My pages have been changed and I hope I didn't miss anything. If you spot dead links or wrong addresses, please let me know.
     Finally, I want to thank everyone on the support mailing list. You may not think you do much or you may at times think some people's problems are trivial but I can say with absolute certainty that your prayers and messages have made a huge difference in some people's lives and you should be proud of your efforts, no matter how small you think they are. Thank you, and thank you again. Well, I'm off to try sleep one more time. Back soon, but not too soon, I hope! :-)
PS. This new keyboard is driving me crazy! Jon.


Tom S, February 16, 1999 - Hi, There are a couple of things that might make life easier for those who find using a mouse and a keyboard to be exhausting, which sounds funny but is quite true for someone living with acute CHF. I use a "tablet" instead of a mouse because it has a penlike device that requires less effort to use than a standard mouse. While I use a Summagraphics tablet (primarily because I already had a couple), there is a wireless version sold under the Wacom brand name. They come in various sizes and price ranges. The second device is a wireless, infrared keyboard. This allows you to sit back and relax and type instead of leaning over a desk or a table. The keyboards now sell for about $70 and are worth it if you need to be reclining, like I do, when working at the computer.


Paul M's February 16 reply to Ben B's February 15, 1999 - Hi Ben, When I started Coreg, I was started at home. Of course, my BP was elevated and my resting heart rate was 136! They even stopped cardiac rehab on me with that heart rate. I guess the doc saw no concerns in bottoming out with my HR/BP since it was so high in the first place. paulmcferrin@worldnet.att.net


Paul M, February 16, 1999 - Hi folks, I'm going to say this v-e-r-y q-u-i-e-t-l-y so the whole world will not hear me and come crashing down upon me. The cardiologist thinks I'm cured of DCM and it must have been caused by a virus that has passed. Yes! PTL! He is now backing me off Coreg. However, my problems are not over. I'm still on more Lasix than I was when I had DCM and my PCP has added yet a thiazide diuretic to my Lasix. What's going on? Possibly renal problems caused by my diabetes. Further tests will hopefully be done after my PCP gets the letter from my cardiologist stating that my water problem is definitely not heart-related. My cardiac echo indicated normal heart with EF 50+. That's one echo and 2 stress MUGAs since May indicating my heart is normal! Paul M, healed DCM, age 51. paulmcferrin@worldnet.att.net


Bill D's February 16 reply to Pat E's February 15, 1999 - Hi Pat, Welcome to our leaky old boat! You know we have a lot of company; Almost 5 million diagnosed and probably a couple of million more who aren't! If you promise to help us keep bailing, we'll make you one of the crew. Other than reading messages on the forums, have you found all the information in Jon's Site Index? What is your ejection fraction? You seem to be getting most of the meds we are, plus the ones for your diabetes. We have lots of members with both. Bill. billdog@gate.net


Bill D's February 16 reply to Tina ?'s February 15, 1999 - Hi Tina, Some of us experience the same thing you do. They are not palpitations. It feels as if your heart is beating so hard it should be visible from the outside! Jon's doctor came the closest in describing it. He said our hearts were large enough they were bumping into our other organs, perhaps our lungs, our esophagus, or our diaphragm. Sure makes a racket, doesn't it! <G> Bill. billdog@gate.net


Bill D's February 16 reply to Ben B's February 15, 1999 - Hi Ben, A number of us are hooked on benzodiazepines. I've been taking them for sleep for almost 10 years! When I was in the hospital, they weren't giving me enough and I went into clinical depression - Black Depression. It was awful. I tore out my IVs and fought 2 nurses and a security guard to get out! I was the only guy on record who called 911 from inside the hospital! They are all alike, no matter what. Valium, Restoril, you name it. I mix them up to get enough of them. Don't take them. Don't get hooked! Bill. billdog@gate.net


Bill D's February 16 reply to Jay Q's February 15, 1999 - Hi Jay, I enjoyed your story about following "Pam's Peeing Procedure." <g> I'd try it myself but a couple of years ago a urologist gave me a Roto-Rooter job. Since then I haven't been able to pee at all sitting down! Not only that, but "Oscar" wants to pee in multiple directions! Rosie complained so much I said, "Here, you try to aim it!" She missed the pot entirely! I went out and bought a big funnel. Peace at last! <g> Bill. billdog@gate.net


John Len, February 16, 1999 - Hi all, Jon, I for one have had the transmyocardial laser revascularization (wow, a keyboard full) surgery plus one bypass about 1½ or 2 years ago. I posted a couple of months ago. While it didn't make me a spring chicken, I no longer have angina and feel like I may make it a few more years or so, especially if I can lose some of this weight. The doctors may not see any difference between the medicated group and the TMLR group but I sure can (talking about heart info mailing list mailing). John Len a_lenny6@hotmail.com
 
Jon's Note: Yeah, I didn't understand their interpretation of the numbers, either. It seemed pretty successful to me


Paul M's February 16 reply to Jay Q's February 15, 1999 - Hey Jay, My wife says that is what bathroom locks are for! <g> That way, she won't know you are trying to kill yourself. paulmcferrin@worldnet.att.net


LeeAnn D's February 16 reply to Tom S' February 15, 1999 - Hi Tom, Thanks for the advice. The whites of my eyes weren't yellow, just red! I did call the doc and have an appointment tomorrow to get my billiruben checked. I did look up RX meds through Links, and jaundice is listed for both beta-blockers and furosemide. Believe me, my thoughts are ranging from, "Is my liver shutting down?" to "Am I eating too many veggies?" I'll let you all know. About the big hot tub debate, my rule of thumb is to get out if I start getting sweaty. I loved relaxing in the hot tub at the hotel while getting a transplant evaluation. Those tests definitely stress you out! LeeAnn in Phoenix, age 38, with DCM. ddavis1057@aol.com


LeeAnn D's February 16 reply to Chuck L's February 15, 1999 - Hi Chuck, Believe me, we all know how you feel! A lot of us have taken good care of our bodies just to have a virus attack our heart or have damage done from pregnancy or just the ever-so-common idiopathic diagnosis. Just remember, your wife-to-be is getting into the same thing now that she was before. Your diagnosis isn't going to change her true feelings for you. After the shock wears off, and it does, you'll see you are still the same health conscious athletic person you've always been. There's a ton of information here, if you haven't already discovered it, and some great people. LeeAnn in Phoenix, age 38, DCM. ddavis1057@aol.com


Ed ?, February 16, 1999 - Hi, Just a simple praise report. My application from date of submission to approval notice worked out to be just under 30 days! I spent 7 weeks, through the fog and confusion of medications, pain and dizziness but followed recommendations to prepare in advance: get medical records, do careful write-ups and get the letter Jon recommends from the doctor stating in no uncertain terms that I am unable to do any type of work at all, now or in the future, etc. God is good. He saw me through, with the help of my wife, doctor and local Social Security office. The turn-around time was super. It doesn't always take so long. I hope this is an encouragement to others. Thanks for your really good information, Jon.


Gwen S, February 16, 1999 - Hi, The first part of this is for the ladies. Every time I have my period, my CHF is extremely bad. I am able to keep stable the rest of the month, but when that time comes, I know I will be in bed until it is over. I am wanting the doctor to do a hysterectomy, but he doesn't want me under for the hour and a half it will take to do the surgery. They are now talking about doing a uterine ablation, whatever that is. While on my period, I can gain as much as 20 pounds. I was wondering if any of the women were experiencing some of the same effects as me. I have tried the birth control pill and am now on depoprover. My gynecologist is now wanting to put me on both together to see if it helps. My EF has gone from 17 to 28, and I am working my way up in doseage of Coreg. I am now taking a little over 21mg twice a day and will probably be increased to 25mg this Wednesday. I now feel a lot better. The doctor started me on Coreg at home, but he started me out on ½ of a 3.125mg tablet twice a day. We have slowly worked my way up. I could not tolerate the doubling of the dose like is recommended, but now that we are going slowly, I am doing fine. So if you experience problems, ask your doctor if you can go to a lower dose and slowly ease up. I now increase 3.125mg twice a day every 2-3 weeks and will hopefully reach my max soon. My cardiologis is telling me my max should be between 25-37.5mg twice daily. Sorry for going on so long. Gwen, age 33 and EF of 28. Gwenddot@aol.com


Bill K, February 16, 1999 - Hi, I'm a 50 year old dilated cardiomyopathy patient. Eleven months ago, I was diagnosed with the condition. My first cardiologist ran the isotope stress tests, nuclear tests, echocardiogram and a cardiac cath. Result: EF was stated at 30, then later revised to 20. I was also told I had intra-ventricular clots and was started on Coumadin. After nearly killing me with Coumadin (in conjuction with gout medication - also a blood thinner), my wife was told by my doctor that I would be a transplant candidate in 3-5 years! Time to find another opinion. I went to the cardiomyopathy practice at the Cleveland Clinic and had another echocardiogram. My EF was shown to be 30 and no clots. Bye bye, Coumadin, hello Coreg and Vasotec.
     Well, it's 11 months later, I take 100mg Coreg a day and 20mg of Vasotec. Two weeks ago, my echo showed an EF of 50 and my heart function was normal in all categories. I will continue on Coreg for at least a year and I have finally started to exercise again to lose the 30 pounds I need to lose. By the way, when having a cardiac cath, you might want to request Versed as your sedative. It is great and you have no memory of the procedure, although you are conscious during it. bkell@erienet.net


Pat L, February 17, 1999 - Hi Jon and everyone, I went to my cardiologist yesterday and told him that in addition to constant PVCs I am having, I have had several recent episodes of chest pain on exertion, including one Sunday night that was very scary. He became aware of the PVCs while listening to my heart with his stethoscope. He had an EKG, cardiac output test, and echo done and came back and said that while there were some subtle changes, he would prefer to not change any meds, or add any. I said what about the chest pain? He said, in essence, I shouldn't be having any because I don't have any evidence of coronary artery disease, so he would not know what would cause this! I am so disgusted with this doctor. I don't know the proper procedure for getting a different doctor. Should I just make an appointment with a new doctor, and contact the old doctor's office to have records forwarded or what? I would prefer to switch to a whole different group. Can anybody give me feedback? Pat L. patlat@yahoo.com


Lee R's February 17 reply to Mercer Sherman's February 15, 1999 - Hi Mercer, We're glad that you wrote and while I know little of Crohn's Disease, perhaps one of our other members will be able to compare notes with you. If you check back in the Archives, you'll find some good stories. Some will make you laugh, some will make you cry. But we're a family of some good folks! Keep in touch. Lee. LeeRoush@aol.com


Lee R's February 17 reply to Chuck Lewis' February 15, 1999 - Hi Chuck, Don't be beating yourself up about the CHF. It seems there are so many causes. You can read up - all 200+ pages here - and learn a lot, but the most important thing is that you will find friends and some great people who will help you through thick and thin. If you learn all you can, take your meds, and exercise under a cardiologist's care, you can last a long time. Hey, at least you know about the supplements, so we may be writing to you for some good advice! Bestest to you and your fiance. Lee. LeeRoush@aol.com


Lee R's February 17 reply to Arlene B's February 15, 1999 - Hi Arlene and welcome to Jon's. We can sure use some good creative low sodium recipes. My e-mail is below, and thanks. I do pretty good with the salt, but I do like my sweets, especially in the winter when I guess the SAD syndrome hits. Although this year in NJ the weather has been warm, so I've been a pretty happy camper. Jon also has some good recipes, check out the Site Index. Keep in touch with us and let us know about your condition, meds, etc. Lee, EF 29%, age 59 - wish that was reversed! Bestest. LeeRoush@aol.com


Lee R's February 17 reply to Pat E's February 15, 1999 - Hi Pat, And we are happy that you posted! It sounds like you are doing all the right things, although I am not familiar with all of your meds as I have only cardiomyopathy and a few little arrhythmias here and there. About the exercise, how about 5 minutes 2 or 3 times a day, but please check first with your cardiologist. Sometimes they will send you to cardiac rehab and I found that extremely helpful. Congratulations on the 38 years of marriage. You obviously discovered right away what a great site this is and how much Jon and the others have done to help us out. Congrats on the weight loss - not an easy accomplishment. Keep in touch and prayers are with you. Lee. LeeRoush@aol.com


Bill K's February 17 reply to Ben B's February 15, 1999 - Hi, I started Coreg at home for the first dose and subsequent upgrades to 100mg per day. It is a good idea to schedule your first dose on a weekend when you are not doing anything. Relax, watch TV but don't plan on doing anything, you won't feel like it. In my case, 6½mg to 12½mg didn't have much effect. From 12 1/2 mg to 25mg caused me to be pretty non-functional for 2 days. 25-50mg, and 50-100mg, I was zonked out for 2 days each, but adjusted to pretty much a normal existence. I have worked a normal job throughout my Coreg treatment. The only side effect is that I don't get the adrenalin surge when I need it in a competitive situation while playing tennis. After beating a local internist in a competitive tennis match, he remarked that he didn't believe I was on such a high dosage. He even went so far as to call my cardiologist to check it out. The next time we played and he lost again, he suggested that he might start taking Coreg <G> if it would improve his tennis game. Coreg affects different people differently, check your blood pressure before and after taking it, rest and take it easy. If it affects you differently, call your doctor immediately. I highly recommend that you find a specialist in cardiomyopathy. They are hard to find but well worth it. They are current on all the latest studies and treatments. My cardiomyopathy doctor (part of a 7 doctor cardiomyopathy group) is worth his weight in gold. bkell@erienet.net


Pat E, February 17, 1999 - Hi, Until my heart attack, I never realized how precious life was. Here's a quote from my favorite Book and some prose to go along with it. "My days are swifter than a weaver's shuttle." Job 7:6 NIV. I don't who wrote this prose but it was true for me. "Moments come and go...sunshine and golden laughter...pale grey days and rain...and mostly I do not recognize them for what they are...My life." Wishing you all the best in Christ.


Cindy McCrackan, February 17, 1999 - Hi all, It's been awhile since I've posted, but I've been keeping up with reading the posts. Thought I would check in, now that my six-month anniversary of being diagnosed with DCM/CHF is looming within a few days. As the Grateful Dead said, "What a long, strange trip it's been." I'm happy to still be among the living and adjusting to this altered existence. I've just started Coreg and my side effects seem to be a kind of high-strungness - tolerable though. I'm also on Lanoxin, Capoten, Lasix, Norvasc, Celexa, Klonopin, lots of vitamins and CoQ10. I walk for exercise, have lost about 35lbs, and hope to lose about 35 more. Everyone tells me how great I look, and I've stopped feeling like coming back with a witty retort about being on the "death diet." I now just smile and thank them. Through this site, I met 2 local ladies, and we meet as an informal support group. This has been extremely gratifying. I no longer work as a Clinical Counselor, rather I substitute teach grades K-8, part-time. The rest of the time I devote to doctor's appointments, volunteering and taking care of my family. It's been a rough road for us financially. My husband now works 2 jobs to keep us solvent but we do what we must. One really neat thing that happened though, is there is much more spontaneous affection amongst family and friends. This illness has brought us much closer together, and for that, I'm grateful beyond words. A warm welcome to all the newcomers to the site, a big hello to the veterans, and a big thank you to Jon for providing this invaluable resource. Warm regards, Cindy McCrackan, age 39, EF 25. cleighmc@aol.com


Jon, February 17, 1999 - Hi, Whoever sent me a bio and has an e-mail address of KChase7053@aol.com please send me your name. A bio with no name doesn't quite make it. ;-) Thanks, Jon.


Kay, February 17, 1999 - Hi Friends, Jon and Gus, just a post to thank each of you for your input to my question. I have a new problem now as a diabetic. This has been since starting on Coreg. I don't know if that's what did it or not. Has anyone else had this problem and does it go away? Kay. Jon, I hope your sleep problem has improved. I started my Coreg at home.


LeeAnn D, February 17, 1999 - Hi everyone, In case anyone is checking on me, my yellow skin is from carotin - my liver is fine! Yea! My doc laughed and didn't charge me or my insurance company anything. He did say it's better to be careful. I do think I'll ease up a little on the yellow/orange/red veggies until I get my regular ghostly white complexion back! I've been laughing pretty hard at the pee posts. I have some good laugh-till-you-wet-your-pants stories, but I'll save them for another forum. LeeAnn from Phoenix, DCM. ddavis1057@aol.com


LeeAnn D's February 17 reply to Bill D's February 12, 1999 - Hey Bill, I asked my doc today if he had any other patients who lead a normal life with EFs as low as mine. First he said, "Sure," then after a minute, "Well, not that many but you're doing great, and EF doesn't matter nearly as much as how you feel." I know with my EF of 12 (that's hard to type) I still lift a 30lb baby, well toddler, in and out of his high chair, car seats, crib, grocery carts, etc, among other mommy things. I know if I don't at least get a little better, this won't last long, and at that point I'll be happy to veg in front of the computer - with kids on my lap, of course! ddavis1057@aol.com


Mark E's February 17 reply to Bill K's February 16, 1999 - Hi, I had a cardiac cath a few weeks ago and had Versed. I agree it felt great and I was very tense before the Versed. However, I can remember the details of the test very well and have no sense at all that I have forgotten anything. I knew what was going on, I just didn't care much. Which reaction is most common with this drug, does anyone know? There is no reason to suffer through a test when Versed is offered. Mark3797@aol.com


Jon's February 17 reply to Ben B's February 15, 1999 - Hi Ben, Here is my own doc's quick version explanation of cardiac index. Doc Porter says:

     Cardiac index is a means of adjusting the cardiac output for the size of the individual. A 7 liter cardiac output would mean one thing for Shaquille O'Neal and another thing for you. Both of you would feel ok with a cardiac index of 3.6 at rest, however. The cardiac index is the cardiac output divided by the body surface area in square meters. You (Jon) are probably about 1.8 square meters. A cardiac index of less than 2.5 is considered significantly reduced at rest.

     Man, I love doctors who answer e-mail questions the next day, ya know! Gino and Doc Porter are both great a help to me/us. Jon.


Tom S' February 18 reply to LeeAnn D's February 17, 1999 - Hi, I'm glad to hear it was only the Bugs Bunny in you that produced the fine far eastern glow to your epidermis. I'm also very happy to hear that the doc threw you a freebie to ameliorate your, and our, fears of the worst. I have a little Popeye in me and just for kicks, I down a package of frozen spinach - after it has been cooked - with lots of real butter on it. I won't mention the salt because Jon would have a hissy fit. Speaking of P stories, for some strange reason, my wife got to potty train son number 2, who was a diligent, brilliant student of her technique. To this day (he is now 24), he can't figure out why he has to tear a wad of toilet tissue off the roll before he flushes. Go figure.


Jenny, February 18, 1999 - Hello, I am 46 and was diagnosed with CHF at Easter last year.The doctor said I have a condition called diastolic dysfuntion. I really don't know what that means. Does anyone else have that problem? I would love to be part of the support group so if someone could let me know when you meet and time, I will be there to talk and be able to listen. Thanks for now. Valsgalno1@aol.com


Jon's February 18 reply to Jenny's February 18, 1999 - Hi Jenny, The support group is spread out in 3 ways - this set of message boards, the chat room, and e-mail. All are powerful tools for gathering both information and support. The Chat room has 3 scheduled meetings every week with times listed on that page. You can also e-mail people to meet you there at a certain time and just jump in and use it as long as you like. It's always there. Diastolic dysfunction can be deciphered using the Medspeak page. Diastole is the part of the heart beat when the ventricle chambers relax and fill with blood. Dysfunction means impaired, reduced, or incorrect functioning of an organ. So your heart is functioning at a reduced level during that part of the heart beat cycle when the ventricles should be relaxing and filling with blood. Details should be forthcoming from your doctor - give him a nudge and see if he won't give you some plain English answers. Welcome to Jon's Place. Jon.


Trav, February 18, 1999 - Hi, I have read this forum several times but never posted. I need some advice please. I am a 45 year old male. Between 1992 and 1994, I had 5 heart attacks, 2 open heart surgeries, 7 total by-passes and I forgot how many caths. I left work in November of 1996 due to major depression brought on by the pressures of work and heart history. I was receiving long term Disability from my employer but this month, they are stopping payment. I have applied for SSD this month (and will be turned down for sure).
     How do I convince my cardiologist to consider my emotional state when rating me for Disibility? He sees only the black and white of the EKG and bases his scale on that. I am a firm believer that there is a correlation between your heart and your head. Advice is much appreciated and needed. Thanks. tkey@mindspring.com


Muriel, February 18, 1999 - Hello everyone, I haven't felt much like talking lately. Thanks to all of you who have kept me from going under with their loving words and jokes aplenty. I lost Ned 4 months ago, Monday, February 15. Even though we did everything we could to prepare me for this, the paperwork has added agony to the grief. Those of you who have lost a loved one, please get a copy of "Widow to Widow" by Genevieve Davis Ginsburg, Fisher Books. It doesn't alleviate the grief, but you learn that what is happening (and plenty does) is not uncommon, and it helps you understand the crazy things you do.
     My systolic blood pressure remains high especially at night and early morning (160-180), while diastolic runs about 60-80. The doctor put me on 5mg Plendil daily for about 6 weeks and then added 2.5mg in the evening to no avail. My BP goes up and down like a yo-yo. I am still on 20mg furosemide, 0.625mg Estropipate, 2.5mg medrooxyprogesterone and two tablets daily of 40mg Avandia (rosiglitazone) for diabetes II. I have been on Avandia for research for 2 years and am beginning the third year. I have about 90-95 blood sugar. It is going on market this fall.
     I walk two to three miles 4 to 5 times a week but I am a tortoise because I have breathing problems if I walk very fast. My ankles still swell at night but the swelling goes down by morning. I have headache and nausea from the Plendil and I am not supposed to eat grapefruit an hour before or two hours after a meal, yet the doctor insists I continue this medication. In the evening and at night, my left elbow, left leg and ankle are painful and sometimes my heart. I still have bowel problems with a pain in my left side like a severe menstrual cramp (I'm long past that). I donšt add salt to my cooking and avoid most salty foods. I am trying to find recipes for one, but I hate to eat although I have only lost 12 pounds and hold onto every pound like glue. I only can use a blood pressure medication for a couple of years and they become ineffective, so I have a long list of past medications. The doctor says my aortic valve is fine. Oh, I have begun to take Ned's 30mg CoQ10 daily.
     I now take 2 Bilberry herb tablets daily for macular degeneration. I have the dry type which is holding its own, but 3 cousins have already lost their sight when it changed to the wet type. The doctor tells me the heart is no problem, but blood pressure. Except for the aortic valve, I guess I'm not ready to join you folks except to still keep up with you and add my prayers for you. Having taken care of Ned for so long, I do understand the confusion, the hurt, the pain, the fear, and the desire to live all of you have. Any time you need me to listen to you, my mail line is open.
     I have become a volunteer Ombudsman at a nursing home near my home. I hope I can help the patients there, especially those who have no one who ever comes to see them. Some of them follow me around when I go there. They need someone to talk with. Also, some of the employees are more careful of their treatment of these patients when someone knows what goes on. Much love. Muriel. wldwdflwr@aol.com


Chase, February 18, 1999 - Hi all, Has any one out there gone from Cordorone to Coreg? If so, did it work for the better? I have been on Cordorone for 3 years. The doc at the Cleveland Clinic is thinking about the change, although she says there are no long term studies. Any opinions on the switch? I understand Coreg is also a beta-blocker. Thanks! Chase G. cmgleg@aol.com


Jon's February 18 reply to Chase's February 18, 1999 - Hi Chase, I have never heard of Coreg substituting for Cordarone. Cordarone is a strong anti-arrhythmia med and Coreg is a beta-blocker, which also vasodilates through alpha blocking. Although Coreg can help reduce PVCs and possibly a-fib to some extent, it isn't anywhere near the potency of Cordarone in fighting arrhythmia. Has anyone else heard of this? The input here always educates me as well as those asking the questions. Jon.


Brenda H, February 18, 1999 - Hi Tina, About the congestive heart failure with peripartum, most do experience it. Without my feet and ankles swelling, I would have had no idea something was wrong. I just had a baby so I thought it was normal to not have as much energy or to be winded. If you had to go on Lasix, or had any of those symptoms, I'd say you did? A lot of doctors don't like to use those words because let's face it, heart failure is scary. I hope that helps. LeeAnn, I'm so glad you're ok, and it was nothing serious! Hang in there. Brenda. Hansonfoxi@aol.com


Ginger's February 18 reply to Chuck's February 15, 1999 - Hiya Chuck, Welcome to Jon's. What you are saying is the same thing all of us have felt - disbelief that this could happen to us. A lot of us never heard of this till we got it but don't lose faith or hope, some of us do improve. We learn to live our lives just a little bit slower, ok, maybe a lot slower in some cases. You can have your wife read the other section, the one for loved ones with this. It may help her to understand what you are going through. Anyhow, we are here for you. Just let us know if we can help. That goes for the rest of all you newbies too. We do have a live chat times a week. Times and days are posted on the chat page. Stay well, ya'll. Hugs, Ginger. mystery@laker.net


Jennifer R, February 18, 1999 - Hello everybody, I have been reading a lot lately. I just got the results of my echo last week and it isn't any better than before. I feel pretty good, though. I just really thought that I had improved so it was a bummer. I have 3 months left, they say, until the cut-off to know if I will recover completely or not. I am going to another specialist in the big city of Indianapolis. I hope he can tell me something more. I guess I will let you know what he says. I go in 3 weeks. Talk to you all soon. Jennifer, EF 40%. JRobi87102@aol.com


Pete E's February 18 reply to Ben B's February 15, 1999 - Hi Ben, I have to agree with Jon that Coreg should be started under supervision. I did not have much trouble, although there was, and still is, a drop in my BP 1½ hours after my dose. My clinic requires patients to stay under observation for 1½ hours every time the dose is increased. They have a couple of patients who had problems. Although rare, better safe then sorry. After all, most of what we discuss here is rare. Pete E, EF 25. Peiden@skypoint.com


Pete E's February 18 reply to Brenda H's February 13, 1999 - Hi, I have to put my 1½ ¢ worth into the hot tub debate. My docs recommended staying away from even swimming pools and baths because the change in body temperature can cause stress on the heart. They stated that I may not feel anything during the soak, but any extra stress on the heart could take some time off it's useful life. Just another viewpoint. Pete E, EF 25. Peiden@skypoint.com


Bill D's February 19 reply to Jennifer B's February 15, 1999 - Hi Jennifer, I was patiently waiting for somebody to answer your question as to what venous congestion was, but maybe nobody knew! I read scads of articles that had those words in it but none of them explained what it was. It must have something to do with how many red and white corpuscles are floating along in the liquid in your veins. <g> One article recommended leeches! How about asking your doctor or calling his nurse to find out? Then maybe you'll tell us! Bill. billdog@gate.net


Ruthie A's February 19 reply to Pat L's February 17, 1999 - Hi Pat, Since I am in the process of finding another doctor myself, I thought I would share how I am going about it. First of all, I am in the habit of keeping an up to date copy of all my medical records. I just ask the office girls to copy the latest entries every so often. I called the large hospitals in town for referrals and I am going to talk to several doctors in the next few weeks. Since I am looking for a PCP, I need to ask what experience he has with CHF patients and under what conditions does he refer to specialists, among other things. You can do the same with a cardiologist. Just write down what questions you want to ask and then take notes of each doctor's answer. You will soon be able to get an idea of what's available and with whom you would be willing to work. The consultation fees may or may not be covered by your insurance, so it may be prudent to check with your provider first.
     Then, when you have made your choice, as I am about to do, just make a regular appointment and bring your medical records with you. The office staff will be so impressed that they will gladly copy your copies and then give them back to you. They will also like it that they won't have to send for them. Then just don't go back to your old doctor. You can call the appointment secretary and say that you have changed physicians if you wish. Just remember that the doctors work for you and not you for them. Does this help? Ruthie A. rlaba@mindspring.com


Heather S' February 19 reply to Bill D's February 16, 1999 - Greetings everyone, Bill, from reading your last posts, you would be well advised to stay away from Australia. If you were a horse, they would simply take you out in a paddock and shoot you! I made my breathlessly anticipated visit to the lung clinic and they didn't want me; No beds. Is that a problem in the States? I am now booked in for a full week of tests towards the end of April, so to all those thoughtful friends who sent me advice on surviving a catheter test intact, thank you. The procedure has just been delayed slightly and several more tests promised. One is a sleep test, which seems a popular one amongst CHFers, and another is like a catheter where they look behind the heart and pass a tube or whatever down the trachea to get there. Could someone tell me what that one is called? I am having my fun with well-meaning friends and relatives. The matriarch of the family arrived with assorted cousins and their family at the weekend, bearing gifts and get well sentiments. A couple of days later, I had a phone call from another branch of the family. "I just knew Aunty Dot was measuring me up for a coffin," I exploded. Now my sister is flying over to spend a week! I love them all dearly but good grief, I almost feel as if I'm obligated to die so as not to let them down! My best wishes to you all. rock@net-tech.com.au
 
Jon's Note: That test may be a TEE or trans-esophageal echocardiogram. Bill, don't let Rosie read this one - she might get ideas. <G>


Sharon J W, February 19, 1999 - Hi everyone, I really get a lot out of the posts. What's with the visual disturbances? I had one yesterday that was so bad I could barely make it to the bedroom. My BP machine couldn't get a reading for over 5 minutes. When I could get the reading, it was my usual 94/45. I had a very brief distortion in my right eye at the store today, but sitting down for a few minutes cleared it up. My doctors dismisss it. I had it last summer before being diagnosed, but I know it's due to poor circulation. Any one else experience this? God bless! sjw49@yahoo.com


Jon's February 19 reply to Sharon J W's February 19, 1999 - Hi Sharon, Besides seeing an ophthamologist for possible eye problems, you should ask your cardiologist to check your digoxin level, which requires strict timing in relation to last meal eaten for accurate results. Digoxin is famous for causing visual disturbances, many involving color distortion. Also, please be aware that migraines produce nasty visual effects and can involve improper circulation. You can have migraines, even severe ones, without ever getting a headache. A neurologist can diagnose and treat that. Jon.


Margie's February 19 reply to Pat L's February 17, 1999 - Hi Pat, This I do know, you can have ichemic heart disease which would cause chest pain, even with clean arteries - because I do. I had a congenital heart defect. Insufficient bood supply to the heart muscle will cause pain. Also, I took Coreg at home and from what I've read here at Jon's sites, my doctors are pretty up on all the best treatments. The only side effects I had was that I was real tired, but then I'm tired a lot anyway. I have a stress test again tomorrow to see if I will be allowed to start cardiac rehab. MFisher238@aol.com


Lisa H, February 19, 1999 - Hi everyone, It has been a long time since I posted or chatted but I still read every day. Things seemed to go pretty good after my pacemaker trauma last June, that is, until Tuesday. I have been diagnosed as diabetic on top of everything else. I know several people on this site have diabetes and I was just wondering if this will complicate the CHF or arrhythmia. I am kind of overwhelmed by doing the new diet and blood checks, not to mention the addition of more medication. I guess I'll be waiting for something else to go wrong all the time now. My husband's news of a major pay raise couldn't even lift my spirits. We wanted to celebrate but chose not to go out to a restaurant for fear of eating the wrong thing! I know things will probably get better but until then, can anyone give me suggestions on any and everything. I'd appreciate it. Lisa. wthall53@aol.com


Phyllis, February 19, 1999 - Hi, I would like to know how high a dosage of Coreg other people are on. I tried the highest dosage (25mg twice a day, I think) and couldn't handle it. One of my cardiologists tried to increase it again but the other one says no. Also, does anyone else's heart seem to be faster when you first get up in the morning? pwatjen@vincennes.net


Pete's February 19 reply to Tina's February 15, 1999 - Hi Tina, I can also feel my heart beat quite often, rather strong at times, even to the point of down right annoying. At first, I thought this may have been a problem but just as yours, my doctor also told me it is nothing to worry about. Well, I'm 26 now and still kicking! BouncdRealityChk@aol.com


Brenda H, February 19, 1999 - Well, I guess I made quite a debate about the use of hot tubs. I think myself I'll pass on it if there's any risk. :o) The one I was in was 106°, too hot. I think it's supposed to be about 102. Anyway, thanks for all your replies! I think the more I go to church and get closer to God, the less I'm afraid to die, whenever that may be. It has also given me the courage to fight this thing. He's great! Thank you, thank you, thank you Jon, you're wonderful! May God bless us all. Hansonfoxi@aol.com


Jon, February 19, 1999 - Hi everyone, For those of you who have, or are starting, Web pages of your own, I have a suggestion. An accurate list of people's names who have multiple health conditions and their e-mail addresses might benefit a lot of people. It would be a very simple page, just listing for instance, those who have diabetes and CHF, arrhythmia and CHF, etc and so on. No fancy graphics or applets or anything, just straight forward stuff. I simply cannot keep up another page which requires constant updating, but thought I would ask if someone wants to give it a try. I could even make the page for you if you want, and you could just do the updating. Please think about it. Jon.


Pat E's February 19 reply to Lisa H's February 19, 1999 - Hi Lisa, I had a heart attack last summer and was diagnosed with CHF shortly after. I had been an uncontrolled diabetic for 20+ years. The heart attack was a life changing event. The 2 most important changes I made for myself was to eat six 250-calorie meals a day and test my blood sugar level 4-5 times a day. This has allowed me to control my blood suger and lose weight. My food plan is 1500 calories a day. Yours may be 1200, 1800, etc. The main thing to remember is 6 small meals a day. It also helps to remember that there is nothing you can't eat, just things you choose not to eat. A bite of your husband's pie savored slowly is just as good as the whole piece. Remember you are not on a diet, the food skills you develop now, you will use the rest of your life. I hope this will help you. Good luck and God bless you.


Deb L, February 19, 1999 - Hi, I am new to this site so here goes. I am a 43 year old who had a VSD repair in 1957, my first pacemaker implant in 1964 and am on my 8th or 9th pacemaker - I have lost track. My heart is now enlarged and I am on an ACE inhibitor. I am wondering if there are any more of us out there who had original holes repaired, ran into heart block, have pacemakers and now enlarged hearts. dlake@kawartha.net


Rosamond Sanderson's February 19 reply to Heather S' February 19, 1999 - Hi, As a newcomer to this infuriating, blessed computer, I have attempted unsuccesfully to communicate with Heather in Australia. This old woman, who because of age and whose children are grown, now has time to straighten out priorities, serenely. I love the spunky Aussie and would like to write her. This therefore, is simply a test to see if I can get through and have permission to e-mail. Thanks, Rosamond S. RWarriston@aol.com


Mark S, February 19, 1999 - Hi, This is my first attempt to use a computer to communicate. I was diagnosed with CHF in May. My EF is 15%. I am currently taking Lanoxin, Demadex, Zestril, Coreg and Coumadin. My condition pretty much follows what I have read with good days, bad days and so on, but I am still learning. I live in the Cleveland area and feel pretty good with the treatment I have received here. My doctor is currently trying to put togeather a support group at the local hospital. I sure hope he succeeds as most persons I talk to have no idea what I am feeling, especially my soon to be ex-wife! Thanks to everyone for someone to talk and listen.


Ginger, February 19, 1999 - Hiya's, I voluntered to make the Web page for names and e-mail addresses of those of us with multiple health conditions. So those of you who have this and want to be on the list for other people to be able to find you easier, please e-mail me your name, and what your multiple conditions are, along with your e-mail address. My e-mail is mystery@laker.net. Cya's at chat. Hugs, Ginger. Mystery@laker.net


Jon, February 19, 1999 - Hi everyone, I handed off the new page idea to Ginger - first come, first serve in this case. To everyone who volunteered, a big thank you and also please don't just fade away - e-mail Ginger and see if any division of labor is possible, possibly even a page devoted to each combination of illnesses with links to specific info and what have you. That is entirely up to each of you but hey, we've accumulated a lot of combined information and experience here - why not share it all as much as possible? If I didn't think big, this place wouldn't have blossomed, so think big, too!
     I also request your prayers for my family. Linda has surgery the 23rd and Linz has taken a turn for the worse. We'll know more next week, when the extensive lab work is done. Thanks, Jon.


Tina, February 19, 1999 - Hi everyone, I was just told by my docor that I have a low white blood cell count and that it could be due to Lasix, but I am only on 20mg. I don't know what is causing this but I go to the doctor's Monday. I will keep everyone posted.


Brenda H, February 20, 1999 - Hi, Am I the only one not on Coreg, or a beta-blocker, besides Tina? I'm really starting to think I should be on it. Jon, so sorry about your daughter, I wish you the best. Thanks, Brenda, age 31 with EF of 25% - wish mine was switched too! Hansonfoxi@aol.com


Ginger's February 20 reply to Mark S' February 19, 1999 - Hiya Mark, You can bet we know what you're talking about. This is the best support group you'll ever find. I hope your doctor does get one together for you, though. In the meantime, we are here, and we definitely understand. Have your wife read the other section, The loved ones forum. She will find support and answers there too. Hugs, Ginger. mystery@laker.net


Chuck N, February 20, 1999 - Hi, I've been reading posts to this site on and off since November of 1997 but have never posted. I was originally diagnosed with CHF the month before, after a trip to the hospital that I still don't understand completely. They thought I was having a heart attack and it turned out they discovered CHF by heart cath with estimated EF of 46%. Then 2 months later, a MUGA said it was 40%. I was put on 20mg of Monopril and 6.25mg of Coreg. Last December, I had another MUGA that gave my EF at 31%. My original cardiologist had said to think of this disease as getting struck by lighting and that not to think about it and take this pill for a year and then come back and see him. After reading posts throughout the year, I decided I wanted a new cardiologist. I saw one at the end of December who seems much better.
     I work an extremely stressful job that demands about 70 to 80 hours a week with constant interruptions and demands for something right away. I have always worried about my ability to continue this line of work since learning about CHF. My PCP however, told me, "Don't change anything for a while." I went to a counselor last winter who asked me why I was holding on to this position. I told him what my PCP was saying and he just shook his head - two very different perspectives. I held on over the year but have realised that I feel a lot worse now with good days and bad days; more bad days than good days. I notice that I am unable to work the long hours I used to work. I simply wear out. I have already had to let go of large parts of the job but have desperately been trying to hold on to what I can.
     After the last MUGA, I felt like I needed a leave of absence. Especially since the second cardiologist recommended slowly increasing my monopril to 80mg, after which my Coreg would increase. I asked this guy about a leave while I adjust to the medications. He said, "No, hold onto whatever sick leave you have." My PCP agreed with me about taking some time off but also lectured me about a recent transplant case where a bishop had administered his diocese from his bedside. The implication was that I should be able to continue what would be left of my former position and follow this guy's example. I then decided I needed more information. After surfing the Net, I found a clinic that specializes in CHF located near family, where I could get another opinion. After one visit, they changed my whole drug regimen, adding digoxin and a diuretic. They found that I am retaining fluid in my abdomen. No one else has noticed this, always worrying about my ankles and legs.
     Sorry to be rambling on so but here's my biggest concern: Work. I feel I can't do what I used to and get well. The clinic here said I should consider a short term disability, maybe more. I know I cannot do the exercise regimen they want me to do, prepare the correct diet, deal with medications and continue a shortened version of my previous position. It simply demands many late nights and weekend hours that I physically can't give it anymore. Should I look at this as a short term disability thing, or really push for full disability at this time? What are other people's opinions about this? I can always get another job that is much less stressful. My wife and I have discussed that possibility and she's looking in this area. What do you all think? I don't like the way this illness has been going so far and know I need to do something. Any comments and advice would be most appreciated. ruthlin@hctc.net


Jon, February 21, 1999 - Hi everyone, My CHF doc, Doc Porter is interested in the opinions of a fine group of CHFers and since I just happen to know such a group,... <g> He is very interested in your answers to the following questions. Please send me the answers by e-mailing me. Just list them 1, 2, 3, 4. You do not have to include your e-mail address or name if you don't want to.

  1. Would you like your doctor to have an interactive Web page for his patients?
  2. What features would you most like to see on such pages?
  3. Would you like him to include a secure page for doctor/patient confidential information exchange?
  4. If you are unsure of Web page security, would you like to have a secure system for e-mailing your doctor? (at no charge to you)

     Thanks for answering - the more answers I can give him, the better he can use the info. He is at a computer seminar right now. A very forward looking fellow, he is. We communicate regularly by e-mail and that is how I get some of my prescriptions called in. :-) Jon.


Heather S' February 21 reply to Rosamond S' February 19, 1999 - Dear Rosamond, You can come again. Anyone willing to pay me such lavish compliments (even if patently exaggerated), is very welcome to e-mail me. If you can't get me at rock@net-tech.com.au, try rowe_patricia16@hotmail.com. By the way, it is surely amazing how quickly you can grasp a few essentials of computering if you are really motivated. Thanks to Jon, and with a wee bit of help from my family, I have learned to research, to e-mail, to forward attachments and to become addicted to forums! All I ever did before was write letters and poems on MS Word. My big fella has just taken a week off work, and I started experiencing serious computer withdrawal symptoms. My prayers for Jon's wife and daughter, and may God bless us one and all. Heather.


Ben B's February 21 reply to Chuck N's February 20, 1999 - Hi Chuck, I know exactly your dilemna. I like my job, and having to go on Disability was really a disappointment to me. I am now on short term Disability (4½ months so far), which in my state lasts up to a year. The problem is that when I was working, I felt like I couldn't hack it and now that I'm off, I feel like I can work almost every day. What I am doing is playing it by ear, but applying for everything as if I am going on permanent Disability. Under STD, I get 2/3 of my pay. The same for LTD from my company, which I am in the process of applying for now. I have also started the SSD process. This is mainly for Medicare, in case I need it. I'm covering all the bases. Then, after I'm all approved and everything, I can try trial work periods if I feel up to it. My EF has risen from 10 to 35 but I still feel about the same. I was working 50+ hours a week, plus travel. My company has me on a long term medical leave and are so far, willing to work with me. I would sure change jobs if I were you. Good luck. Ben B.


Ben B's February 21 reply to Tina's February 19, 1999 - Hi Tina, My white blood cell count has also been all over the place. Mainly high, but with a low leucocyte percentage, which made me think I was going to die soon because of one of the studies I read on the Web site. I'm not worried so much now because I know that many medications can affect this, including ACE inhibitors and diuretics (according to my Pill Book). My doctors all know about this, and they don't seem too overly concerned. Ben B. bdbrinkman@juno.com
 
Jon's Note: I thought leucocytes were white blood cells (?)


Bill D's February 21 reply to Trav's February 18, 1999 - Hi Trav, You didn't say whether you have CHF. I believe all of us who are on SSD got there because of it. Depression is another cup of tea. Cardiologists aren't going to hazard a guess because they feel they'd be getting into a psychologist's turf. Are you seeing one? What's he say? I think I'm safe in saying all us CHFers have bouts of depression. I don't seem as bothered anymore, reading posts from people who are much worse off than I am. Still, I've had my moments. I tore out all my tubes one day while in the hospital and got in a fight with 2 nice nurses and a big security guy - I wanted out of there! I still hold the record of being the only patient who called 911 from inside the hospital. The cops showed up and everybody was embarrassed except me. <g> Bill. billdog@gate.net


Bill D, February 21, 1999 - Hi Mark and Rosamond, Welcome to Jon's Place! In addition to the forums, Jon has compiled over 200 pages and links to information you should know about CHF. On the top of this page, click on Site Index. Start by reading The Manual. You'll find information about CHF medications, medical procedures, tests and the reason they do them, what diet and exercise programs should be, information on the newest experimental drugs and procedures and how we try to cope with CHF. We're glad you found us! Bill. billdog@gate.net


Bill D's February 21 reply to Sharon J W's February 19, 1999 - Hi Sharon, I have had a couple of visual disturbances too. In each instance, only one eye was affected and it only lasted for a few minutes. It was like a gray fog had gathered and the only vision left was down a tunnel in the center. Much later, my cardiologist said I had a couple of TIAs (mini-strokes). Does that description sound like what you had? Bill. billdog@gate.net


Bill D's February 21 reply to Chuck N's February 20, 1999 - Hi Chuck, I think you better change your PCP and the faster, the better! He should be referring you to a cardiologist and not trying to treat you himself. The second thing you should do is go up to the top of this page and click on Site Index. Start by reading The Manual. Take a look at Who's Who and compare their medications to yours. You must educate yourself. Your ignorance is killing you. See what Jon says about getting SSD. Bill. billdog@gate.net


Roger C's February 21 reply to Brenda H's February 20, 1999 - Hi Brenda, There are some people like me who can't do the Coreg thing due to being in atrial fib all the time. Coreg makes my blood pressure and pulse do strange things. Thanks, Roger C. rdconnel@bellsouth.net


Staci H's February 21 reply to Brenda H's February 20, 1999 - Hi Brenda, You and Tina are not alone! I am not on Coreg or any other beta-blocker either. I cannot go on them because I have asthma. I am hopeful that there will be another medication that will be used in the future that will do the wonderful things for CHFrs that Coreg has done and continues to do. Keep your chin up. :) Jon, you and your family are in my prayers. Thank you for all your hard work! Staci, DCM, EF 38, from Oklahoma. quirki98@aol.com


Ben B, February 22, 1999 - Hi, Jon, I meant to write "lymphocyte percentage." Ben B


Sharon J W's February 22 reply to Bill D's February 21, 1999 - Hi, Thanks for the input. My visual distortion is zig-zag, starting on the side and eventually the whole line of vision, making it impossible to see. After Jon's input (my digoxin level is fine), I recalled my opthamologist telling me years ago that I had a form of migraine. I had forgotten that and it had actually disappeared. I will get a neuro consult. I know how dangerous high BP can be but it's the pits having it go down to 80/30. I'm concerned that I won't be able to increase my ACE inhibitors when the time comes. Oh well, no one of us chooses our symptoms. I wish us all rainbows, despite our rain. sjw49@yahoo.com


Robin W's February 22 reply to Chuck N's February 20, 1999 - Hi Chuck, I can relate to your confusion on what to do about work. The first time I was diagnosed with cancer, I thought there was no way I would be able to work and I went on Disability. After adjusting to the routine, I found I could work and wanted to. Since your meds have been adjusted, I would suggest short term Disability. Don't count yourself out yet. After being diagnosed with CHF in 1992 and put on appropriate meds, I worked 4 more years before having to go on SSD. I know if I had given up my job right away, I would have regretted it. But, you know you and I'm sure you'll make the choice that is best for you. Robin W, EF 8%. jwilson@nb.com


Tom S' February 22 reply to Sharon J W's February 19, 1999 - Hi, For several years I also have had visual disturbances and recently asked my cardiologist about it. After describing what occurs, he said it was an "eye migraine headache" although there is absolutely no pain associated with the onset of their brief and only occasional occurrence. Mine basically manifest themselves as a flickering in the center of vision, usually in one eye only. I have had occurrences of bi-ocular migraines but that is usually very rare. The flickering then starts moving out in a circle with a definite pattern to it of a jagged edge that flickers between white and black. The flickering ultimately obliterates vision in one or both eyes and may take upwards of a half hour to subside. In some of the old Indian cave art, there is a duplicate of what I experience and that's what got me curious about it. I also thought they had to do with heart or vascular disease, but my doctor reassured me it had nothing to do with the circulatory system, oxygen starvation to the brain, or onset of stroke. In fact, my cardiologist (who is all of 30 years old) said he experiences the same exact phenomena and is the picture of youthful health. I hope my experience helps alleviate some fears for you.


Will W, February 22, 1999 - Hi everyone, I haven't posted for some time, but I read "The Beat" every day. I am glad to see that there are a lot of new faces finding this site. Thanks to Jon, the information here is very, very helpful for those who are devastated when learning of this condition that may end their lives much sooner that they expected, but if you walk across the street and a car sends you flying into the next county, it is a sudden ending anyway, right? We have learned to live each day at a time and to thank God for the good days and ask for His help on the bad days.
     I am going into my third year after transplant and am doing great. I am beginning to really feel as if I might be able to really get back into doing some of the things I enjoyed before CHF. I will be celebrating my third birthday this month that I probably would not have celebrated without the transplant. I went to San Francisco in December for my second annual physical. It was to be a 2 day testing. The first day went fine, all the tests done and instructions for the right heart cath to be done on Tuesday. I went to the hospital bright and early. When I got there, I thought I was early because it was so dark in the waiting room. Then I was told that someone had hit a main electical switch and had shut down most of the Bay Area's electric supply! I waited until 1 PM and then was told to go home and they would re-schedule for another time. Talk about a long wait at the doctor's! I returned last week and do not have to go back for another biopsy for 6 months. That is the longest time you can go without having a biopsy. Now all I have to do is to keep from getting hit by that car!
     For those who have not done so lately, I strongly urge you to look into the Who's Who section and read Wanda Brewer's account of her transplant experience. I only wish I were able to write as great an account of my own as she has done. For those looking down the road to transplant, it is must reading. Great job, Wanda! Jon, my prayers are with you and your family. Thanks for all the help you are giving to the people in this forum. Will. heart266@tco.net


Sigmund B, February 22, 1999 - Hi friends, I just ran across an Url that may be useful. It contains an index of health-related websites, but of more interest, a look at what's in the works now and in the future. Covering a variety of diseases, including cardiac problems, you can access the site at http://future.newsday.com/. Thanks again Jon, for your faithful efforts for us CHF sufferers and I pray that you and your family make speedy recoveries. Sig B. sbegun@hoflink.com


Dave A, February 22, 1999 - Hi, I was spouting off about Coreg and Cordarone. I had an EPS in January and they started me on Cordarone to control the arrhythmia. When the Cordarone was started, the doc cut my Lanoxin and Coumadin doses in half because the Cordarone doubles their effect. There's also a problem with Coreg cuz both Cordarone and Coreg lower your heart rate, sometimes significantly, and potentially to dangerous levels. My docs didn't adjust my Coreg. I'm still taking 25mg daily but they've postponed increasing it as we had planned.
     I'm also being monitored pretty closely; on an event heart monitor to track my HR as well as the arrhythmias and weekly bloodwork to watch the drug levels and test for liver function, and also pulmonary testing. Cordarone (amiodarone) has some pretty serious side effects (potentially). I suppose the other option is an implant but that wouldn't alleviate (reduce) the symptoms like the drug therapy does. Oh well, so it goes. Say a prayer for me. I'll be at the Cleveland Clinic the end of this week for 2 more days of testing. Being scared is new to me. I was diagnosed with DCM/CHF in 12/97. My EF has been less than15% and holding. I've been through 3 caths this past year and haven't been too terribly anxious but this time I'm getting a bit nervous. I suppose nobody looks forward to this stuff but I've never been afraid before. Being with the folks at CCF is the only reassuring part of it all. Nothing ever bothered me before but I'm feeling that when they come at me again, I'm gonna freak. Oh well, so it goes. The other option don't look so good. Who am I kidding, the other option is certainly painless but is so final. I guess I'm not ready to begin pushing up daisies yet. Thanks for letting me ramble. Later, Dave.


Jon, February 22, 1999 - Hi everyone, Linda has surgery at 8AM Tuesday morning. Please remember her, and Linz and me, in your prayers. Thanks, Jon.


Julie S, February 22, 1999 - Hi Everybody! I was diagnosed with CHF a month ago after my second heart attack. My EF is 20%. I'm taking Lanoxin, Vasotec and Furosemide. I've been reading everything I can get my hands on. I've been going to cardiac rehab for a week now and it has made a difference in my energy level already! As a single mother of three, depression is my worst symptom at this time. My blood pressure has always been low, and now I get very excited if it reaches 100/60. I want to treat this disease aggressively but I think I may be somewhat restricted since my blood pressure is so low already. I can't imagine my doctor prescribing a beta-blocker, maybe someday. I already intend to ask him about CoQ10 and Coreg. I'm sooo glad there are others out there who are going through this with me. I'm using my mom's computer today. I only have access at work and don't know when I'll get back. I'll check back when I'm visiting mom again.
 
Jon's Note: Beware Coreg - it's primary action is beta-blocking. See the Coreg page


Mark S, February 22, 1999 - Hi, What a great feeling seeing response to my first attempt on this forum. I just had some great news - I got approved for Disability and will start getting payments in March. Things are looking up. Now that I don't work, I have lots of time, so if anyone is in the Cleveland area getting tests or anything, and would like some company, just let me know. I wil post my e-mail address at a later time.


Liz J, February 22, 1999 - Hi Jon, I just got some bad news about Nancy (CNAN). She died Friday the 19th. She posted to the group while I was in the hospital. We e-mailed each other almost every day and we were hoping to meet when I got stronger. I will miss her but I know she is in God's hands. Liz J. EJa83911@aol.com


Linda O, February 23, 1999 - Hi all, Gregg, you e-mailed me about my study. I too feel lucky to get to do this and feel like I am getting good and constant care that maybe would have otherwise been a little stretched out and maybe haphazard. I have no symptoms or changes, so I think I am on the placebo. The nurses in my cardiology clinic in Lincoln, Nebraska wanted me to have the ICD implant. I think the amiodorane must be helpful or they would not have stopped your study early. Did you have any unusual or different symptoms while you were in the study? Jon, Please be strong and hang in there. It seems that we all are taking turns right now. Kiss your girls and tell them we are praying for them. Linda O, age 59, EF 26. norvalo@clarinda.heartland.net


Claire F's February 23 reply to Ruthie A's February 15, 1999 - Hi, I recently started using a computer at work and read the site for the first time. I was diagnosed with DCM and CHF 6 years ago. The prognosis was guarded as 2 of my siblings had already passed away from DCM. The diagnosis was initially missed despite classic symptoms for women (passing out). I proceeded with a planned pregnancy and was diagnosed midway. The pregnancy did not cause my DCM, although it did not help. A review of all my echoes showed an EF of 40% two years prior to my diagnosis and it was 25% at diagnosis. My goal at the time of my son's birth, was to make it to his first birthday. Well, he is now 6 years old. My EF is between 45% and 50%. Along the way, we lost the first child in my son's generation. Two others have been diagnosed. They were all diagnosed as they hit puberty. So far, my son is the only one unscathed. He hasn't hit puberty yet.
     I started reviewing the site, hoping to find someone with the odd peripheral symptoms that I have. I was shocked to find such a person the first time I looked. I have swallowing problems, not just slow passing of food, sometimes my whole esophogeal system decides to take a vacation. On 3 occasions, my epiglottis spasmed and totally blocked my airway (similar to when food gets lodged). When it is at its worse, my digestive muscles no longer contract with normal motility and relax. This sends whatever food is supposed to be down, up. Now doctors have responded to the symptoms in a whole spectrum, from saying it is the enlarged heart pressing, to it is psychological. These problems are not directly correlated with cardiac symptoms. They are in that they are worse with greater fatigue, but they also can be present when my heart is happy. I think it is an overall smooth muscle syndrome.
     Also, to Lee Ann D, the mother of the toddler, been there, done that. I gave up on considering myself the normal parent after having passed out on a flight of stairs while carrying my son. As soon as he learned to talk, he clearly stated fast food french fries were french fries no salt and ones from home were french fries. One thing we started doing was using electric mobility scooters. If you are willing to deal with the stares, life is easier motorized. Once he started walking, I started using a walker with a seat. That way when he wanted to be pushed/carried, he just sat on the walker (it was on wheels) and I always had a place to sit when I became tired. I still use the walker for myself whenever I run errands. On really bad days (which have become infrequent), I still use the motorized scooters. Life is easier motorized. I now even have a conventional bicycle that has an accessory motor that kicks on with a button when I hit hills.


Candy's February 23 reply to Chuck N's February 20, 1999 - Hi, In my opinion I'd look at it as a short term disability thing. Does your place of employment have a long term disablity plan? Also, I believe that it's a law where a work place having a work force of 50 employees or more have to to follow the family leave act. This allows a person to take 12 weeks per year off because of illness without the threat of eliminating your position or laying you off. Of course, you have to use paid time off as part of the time off. When you run out of paid time off, it will be unpaid off. My PCP wasn't going to back Disability because she said it was the specialist's job. They are backing me. I give you a lot of credit for attempting to work what you used to but your first priority is to take care of yourself. CMPotila@aol.com


Roz S' February 23 reply to Ginger's February 20, 1999 - Hi Ginger, I didn't know how to address a note to you and all those fellow travelers I met in your Chat Room Saturday evening. My computer crashed before I had time to thank you all for a warm welcome and wish you a correctly proper good night. RWarriston@aol.com


Jon, February 23, 1999 - Hi guys, Linda's surgery went extremely well and she is doing much better than expected, even. Full credit goes to the man who holds her in His hands. He paid special attention to her safety due to all the prayers sent on her behalf and I thank you all. I'm pooped and then some, so I am turning in. Back tomorrow, and again, we thank you. Jon.


Ginger's February 24 reply to Roz S' February 23, 1999 - Hiya Roz, We understand when people get bumped offline. It happens to all of us at one time or another. It was very nice to meet you too. If you need my e-mail address so you can write, it will be at the end of this note. Hi to all you newbies, too. Come to our chats - it's our chat room, not my chat room. <G>. Chats have gotten pretty good. We talk about anything and everything that anyone wants to talk about. Jon, our prayers are with your wife this morning, and you and Linz as well. Stay well, y'all. Hugs, Ginger. mystery@laker.net


Al M, February 24, 1999 - Howdy, When you e-mail from Texas, I understand that messages travel faster with the appropriate greeting. I recently discovered Jon's site from my doctor pharm D and friend, and I read with interest the many posts. I've never posted anything, anywhere before, so here goes.
     I noted that a number of folks are taking Cordarone. My first cardio-quack put me on that. I was in a-fib and knew nothing of CHF. About a year later I moved to Texas (San Antonio) and ended up with a pretty good cardio-dude. By then, my skin was a purple tinge - that being a side effect of Cordarone. The first guy also had me on Varapamil. The new guy said I was a transplant candidate and referred me to UT Medical School in San Antonio, where I got real lucky and ran into my guys, the pharm D and a cardio-genius, Doc David Murray. After exploring all the pluses and minuses of transplant, I said nuts to the thing. I didn't want to trade one illness for another. At that point, Doctor Murray mentioned a phase 3 clinical trial. They were testing a mega-dose beta-blocker that already had FDA approval for other things, an older beta-blocker, not Coreg.
     My EF was about 19 or 20 on MUGA. I was diagnosed as an early Class 4 on the magic scale for transplants. They took me off Cordarone. I was getting all the side effects and none of the benefits. They took me off Verapamil, saying it is contra-indicated in CHF. Of course, I'm doing a bunch of other meds: 5mg Coumadin 5 days/week and 2.5mg other two days, 20mg Vasotec daily, 0.25mg lanoxin daily, 160mg furosemide daily, 50mg spironolactone daily (not for diuretic, more for potassium retention) and 40mg Lescol daily and the magic pill for the test. That was 15 months ago. I got lucky and got the real deal pill, obviously, because now I'm a mid-level Class 2 person, my heart and liver have shrunk to normal sizes and I do not have breathing problems.
     The study is called BEST, nice name, but while it may be the best, they mean something else. Of major concern to me and probably others, Coreg may work for some, mostly those with BPs high enough to tolerate it, while this older drug in mega-dose (I take 200mg/day) works for you if your BP is low. Mine is from 80-90 over 48-60 pretty much all the time. I don't know if the symptom is common, but I dropped from 200 to about 135 in 7 or so months before I got in the program. People I had not seen in several months were asking me in hushed tones if I had cancer. Apparently, a side benefit of this drug is it stimulates the heart to produce the proteins that encourage weight retention and gain. I'm now back up to about 210, but wish it had stopped around 185! They are now looking at this as a drug to give to folks with AIDS and cancer to help them retain muscle mass and improve immune response - benefits, apparently everywhere.
     Ask your cardio-people about the BEST study or call your local VA hospital, although that can be a nightmare dealing with the people who answer the phone. It may be something to look into. I'm amazed at the difference in me. Being new at this posting thing, I don't know the manners, but if anyone wishes to e-mail me, I'd be more than happy to answer anything I can. Since I don't sleep a lot anymore, I'm liable to be on most any time. Regards and good luck. Al M. ajmiii@web-access.net


Mark S' February 24 reply to Ginger's February 20, 1999 - Hi Ginger, Thanks for the advice for my wife. However, I was unable to locate the forum you mentioned. Then I also realized that I don't really care what she thinks. However, I do know someone who should read that, so help me out here. Waiting for your reply and you have a great day!


Luc D, February 24, 1999 - Dear friends, I just want to say that I am sorry to hear the very bad news about Nancy. She is gone to heaven now, let us all pray for her. I have some very bad days myself now. I have such bad chest pains they almost drive me nuts and I really don't know anymore. I have been taking more of my medications to kill the pains but they don't seem to help anymore. May God bless you all, my freinds, and may we have some better days! Luc.Deseins@ping.be


Terry, February 24, 1999 - Hi, I accidently happened upon this site while checking out my new laptop. I have an enlarged heart and CHF which may have been brought on by my apnea, slow or non-functioning thyroid or my diabetes. I have been sooo depressed. My doctor has about given me up for dead. I would like to talk to others with enlarged heart and CHF. Thank you. Terryfish@aol.com


Margie F, February 24, 1999 - Hi, I have a question for anyone with an AICD. Has anyone had trouble with their left arm? A month ago while I was sleeping, I slung my left arm out away from me. It was extremely painful. Every time I think it's healed or stopped hurting, it starts up again. Has anyone experienced this? Or did I do something out of the ordinary to it? Jon, my prayers are with you continually. Margie F, AICD, CHF, HCM, EF 20, 52 years old. MFisher238@aol.com


Ginger, February 24, 1999 - Hiya's, We ran into a situation last night that started some of us thinking. About 7 of us were in a chat and all of a sudden Pam E didn't feel right and thought she might have to go call an ambulance. So she logged off our chat. Well, we were all very worried and it dawned on the rest of us that we had no way to contact her or her family to see if she was okay. We didn't like that feeling at all. So we decided we needed to make an emergency contact page. The only way we could find was to make the page and let the people here know where to find it and join it if they want. This way it is not just out there on the Web. People would have to come here to even know it exists. So I am making the page and will post the Url for it here. There will not be a link to it on my web pages. This way we can keep it as private as we can.
     We get very close to the people here and come to care for them like family. It is so hard to know one has an emergency or is very sick and we have no way to find out if they are ok. All we are putting on the page is our name and phone number or a fax number if preferred. If you would like to be able for someone from here to contact you if they felt the need, then e-mail me your name and number for the page. By the way, Pam E is okay, :) but it was a hard time waiting to find that out. Also, for those that missed the post about multiple conditions: We have a new page where we are listing people with multiple conditions so other people can contact those who have the same conditions they do. If you have multiple conditions and want to be on the page, just e-mail me your name, e-mail address and just a list of your conditions. Chats have been going good. So all you newbies check out our posted times and come join us. Stay well, ya'll. Hugs, Ginger. mystery@laker.net


Jon's February 24 reply to Ginger's February 24, 1999 - Hi Ginger, There are options if anyone doesn't want to list their personal info on a Web page. One option to consider is having individuals hold a list of names, addresses, phone numbers, etc,... Then if you need emergency information, whoever wants it can request it from one of the "holding" persons via e-mail. If using a Web page, you might want to prevent robots from searching or indexing the page. Proper meta tags can prevent that (I can send an example). You can also assign password protection to a page if you want to, without server side info. Rather than posting the Url here, you might want to make it available by request via e-mail. I allow the heart forum pages to be indexed by robots and it won't remain secure if the Url is posted here. Also, if you want to put a form on your multiple conditions page for people to send you their info, let me know. I can point you to the free server who does my forms - they are very reliable and the HTML is easy. Jon.


Keisha T, February 25, 1999 - Wow, what a wonderful source of information. This is my second opportunity reading this Web site and I had to respond. During my first encounter with this site, I elected to read, read, read. I have learned so much. I am 33 years old and was diagnosed with CHF at the age of 31 in April, 1997. In thinking back, the symptoms presented within days of my daughter being born. I thought I was coming down with a cold, and was initially diagnosed as having bronchitis. After three days of medication and feeling no better, an x-ray of my chest revealed an enlarged heart struggling to perform. I am trying to learn all that I can. I have been depressed off and on because I have had trouble getting to the doctor, getting my meds, and getting insurance to cover me (they were trying to call it a pre-existing condition). After being diagnosed in April, 1997, I was without insurance from August of 1997 until January of 1999. God has been my keeper. I now have appointments to see my PCP, my cardiologist and my transplant specialist to get back on track. Thank you Jon, for now giving me someone to talk to. I wish I had known about this site earlier. I have so many questions and concerns and fears. I feel that my condition has worsened. I guess I'll find out soon enough. I will stay in touch. God bless and keep all of us. Thanks for listening. Kekt@ync.net


Unknown, February 25, 1999 - Hello, I have been taking furosemide for about 4 years and an ACE inhibitor (Enalapril) for about 3 years. I have been diagnozed with dry eyes. Can there be a relation between taking one of them and dry eyes? xyz@wwdg.com


Dede G, February 25, 1999 - Hi, What is DCM? hurd@value.net
 
Jon's Note: See Medspeak


Ginger, February 25, 1999 - Hiya's, It's me again. We have thought of a better way to insure privacy of this new emergency contact page. If your number is on it, you will be e-mailed the Url for it. That is the only way we can think of to keep our privacy. Hugs, Ginger. mystery@laker.net


Brenda H, February 25, 1999 - Hi, I was just at Safeway and used one of those BP machines and it said my heart rate was 90, and my BP was 140/65. Is this too high, with CHF? What do the top and bottom numbers mean? Thank you, and glad all is well, Jon. Brenda, age 31, EF 25. Hansonfoxi@aol.com


Bill D's February 25 reply to Terry's February 24, 1999 - Hi Terry, You have come to the right place. There are thousands of us here facing the same problems you face. Welcome to Jon's Place. In addition to the forums, Jon has collected over 200 pages and links to information you should know about CHF. On the top of this page, click on Site Index. After you read The Manual, you'll find information about CHF medications, medical procedures, tests and the reason they do them, what diet and exercise programs should be, information on the newest experimental drugs and procedures and how we try to cope with CHF. Terry, many of us have fired our doctors and were glad we did. You need a cardiologist who doesn't leave you feeling you've been left for dead. It makes all the difference and will save your life! Bill. billdog@gate.net


Bill D's February 25 reply to Al M's February 24, 1999 - Hi Al, Here's a big Welcome to Jon's Place. Most folks don't realize there's far more here than just reading the forums. Jon has information on every aspect concerning CHF. Had you found us sooner and clicked on Site Index at the top of this page, you would have probably realized you were dealing with a cardio-quack much sooner! You could have checked his transplant info and compared your meds with what the rest of us are taking. For a fellow who never posted anything, anywhere before, you're off to a great start. <g> (means grin) What is a "doctor pharm D and friend?" Is that one person or 3? You'll be happy to know that we have lots of company in our leaky old boat. 4.8 Million in the United States who've been diagnosed and probably a couple more million who are being treated for asthma, emphysema and other stuff. I think your beta-blocker trial is the old standby metoprolol (Lopressor). I read that the Coreg trials were the only ones where they checked out what it did for CHFers. Now they think any old beta-blocker will do as well. I'll bet that's what the trial is for. Bill. billdog@gate.net


Carol O's February 25 reply to Liz J's February 22, 1999 - Hi, I was very surprised and saddened to hear about the death of Nancy (CNAN). Nancy went out of her way last spring to write to me and give me strength to prepare for surgery on my mitral valve. I had written a note asking if anyone else with cardiomyopathy had also had mitral valve repair surgery, and Nancy immediately wrote to me and told me exactly what to expect after the surgery. Nancy really helped me prepare for this operation because she often wrote to me to let me know that it was ok to be afraid of surgery, but that she was sure I would come out of surgery very well. Nancy continued to give me encouragement for months after my surgery. I will never forget how kind Nancy was, and the strength she gave to me as I faced this operation. I am praying for Nancy and her family at this very sad time. Carol O. pinevalley@mediaone.net


Paul M's February 25 reply to Terry's February 24, 1999 - Hi Terry, Close that door to "Death's Door Club!" Don't give up right now. I will not lie to you; Most persons who have CHF due to such things as dilated cardiomyopathy do not get healed. Many do get better symptoms and longer life with proper meds. There are some who do get cured. Many typically do not know what group they are going to be in (healed vs non-healed). You've found a terrific site on CHF, with lots of information that you typically will not get from any one doctor. Take a look at The Manual. Tell us more about you, like what specifically is wrong with your heart, what meds, and start asking questions. We have lots of answers. One disclaimer: we are not doctors but we definitely know more than some of the 'bad' doctors. We can't prescribe meds but we can definitely share information, love, care, and concern. Welcome. paulmcferrin@worldnet.att.net


James L's February 25 reply to Tina's February 15, 1999 - Hi, I began hearing my heart pound, especially trying to sleep. This was a symptom that I put up with until other signs drove me to informing my doctor. The new symptoms were a brief collapse of legs and an unability to grip, also the color white on shiny cars was very irritating. The doctor rushed me to the hospital for a doppler on my carotid artery and discovered a 98% blockage. After a quick operation that reamed them out, my heart pounding stopped. It was the pulsing of the clogged artery. monies@msn.com


Linda ?, February 25, 1999 - Hi, Prayers for all and hello again. I've been battling pneumonia and believe me this is not fun. I could use your prayers, sometimes I feel as if I could just give up. lreha@webtv.net


Heather S, February 27, 1999 - Hello to all at the top of the world. I hope today brings a joyous moment to each of you. I have been asked for feedback from an Indian doctor at Dr Mani's "The Heart Beat" Healthzine at http://dencats.org/heart/register.htm. He wants to know if people would be interested in buying a book about congenital heart defects or about CAD. I steered him towards Jon's Place, but the Net is full of pitfalls, perhaps some of our people would like to check out his site and then give him some feedback also. I personally found his style great reading, neither simplistic or patronising, nor dry as powdered bones in a medical dictionary. He also answers questions. Try also http://heartdisease.miningco.com. His e-mail address is sivaraj@giasmd01.vsnl.net.in.


James L, February 27, 1999 - Hi, I have a recurring problem that neither my primary care doc or my cardiologist seem to have an answer. In time lapses of six months or a year, I would experience a very painful and scary cramp in my chest. I would gasp and puff like a wart hog near death. It felt like what I imagine a collapsed lung might feel. These attacks lasted from about 2-10 minutes and subsided when I was finally able to relax. In recent months the episodes have become more frequent, having had four frightening attacks. My cardiologist thinks they might be related to angina, one pain I have avoided in spite of a previous heart attack and CHF, but he prescribed nitro and it had no apparent effect when I struggled through the last episode. Has anyone experienced anything like this? monies@msn.com


Al M, February 27, 1999 - Hi, I posted some info on the clinical trial I'm in called BEST. I spoke with one of the people running the trial today and was told that the open enrollment stopped in December. The name of the beta-blocker being used is Bucindilol. There is, however a new trial about to start using a drug called Moxcon. It is not a beta-blocker, however they hope the results will be the same as the above test. I was told that interested folks should get in touch with a "university medical school hospital in their area" or through their doctor. The drug company calling for the test picks up all test costs. I don't know what the specs are, but it is something new on the scene. I suspect it has something to do with folks who can't, for whatever reason, tolerate beta-blockers for BP reasons. Will pass on more info if I get it. Al M. ajmiii@web-access.net


Jon's February 27 reply to Al M's February 27, 1999 - Hi, Could the drug name you are thinking of be Moxonidine? Jon.


Ben B's February 27 reply to Brenda H's February 25, 1999 - Hi, The top number (systolic) is the maximum blood pressure and is measured during the contraction of the heart. The bottom number (diastolic), is the least pressure of the vascular system, measured when the heart is relaxed. Normal is generally around 120/80. In Asian countries where they eat little sodium, people sometimes have 90/60 but here that would be considered low. The 140 value would probably be counted as a little high today, but this value particularly varies with nervousness. My pressure varies from 120/70 to 150/90 but medicine is getting it under control. Unless it gets really extreme, I'm sure your doctor is well aware of your pressure. It almost seems they throw a blood pressure cuff on you when you go to get a haircut! bdbrinman@juno.com


Brenda H's February 27 reply to Linda ?'s February 25, 1999 - Hang in there Linda, I know how you feel and most of us probably do, but it does get better, we just have to fight it. My prayers are with you, chin up and smile, be glad to be alive! I know, easier said then done. (hugs) With all the rain we're getting here in the great NorthWest I could easily get depressed, but I'm fighting it! Brenda, age 31, EF 25%. Hansonfoxi@aol.com


Rick M's February 27 reply to Brenda H's February 25, 1999 - Hi Brenda, If that reading is too high for you, I think you can get a lower one at WalMart. <G> Blood pressure is a very personal thing. I have a home machine that is fully automatic and I have played with the various readings I can get at different times of day or night, at different levels of activity. By keeping a careful record, it is possible to see the patterns of the events that cause your pressure to rise and to drop. I always suffered from the White Coat syndrome where the doctor or nurse (as long as the coat is white) taking the reading would always come up with a higher reading if they take the pressure as soon as I sit down in the office. If they wait until I'm relaxed, the reading is much lower. Try it. rearadml@iu.net


Arlene B, February 27, 1999 - Hi, To all who responded to my offer for recipes, I'm sorry I have not responded sooner. I have been very preccupied with bad leg inflammation the past 10 days. I will be sending out recipes to those who sent me US mailing addresses. To those who sent me e-mail addresses only, I must confess to being a computer illiterate. After several hours of help, I find that I still am unable to send this recipe file by e-mail, so those who want them must send me a US mailing address. Arlene. GoldysBest@aol.com


Joy R, February 27, 1999 - Hi, I am 51 and have had DCM since September of 1997. In November of 1997, I went into CHF. At the time I was put on IV Primacor and stayed on it for 4 months, going to the hospital 4 days a week. My insurance won't cover Primacor for home use so I have been on dobutamine that I infuse at home 12 hours a day for 5 days a week via my Hickman cathether. I wonder if there are others who have to infuse inotropes at home to keep out of failure. My EF is 30% on dobutamine infusions and without the IVs, I get in respiratory difficulty. My other meds are Vasotec, Coreg, Lanoxin, Lasix, Potassium and Propulsid. I would like to hear from others, especially if you have been on the IV drugs. I am worried that my time is running out since dobutamine is not a long term drug. Also I am not a candidate for transplant because I have GI problems. wapalaremi@aol.com


Jon's February 27 reply to Joy R's February 27, 1999 - Hi Joy, To you and to all those who have Class 4 CHF but cannot obtain a transplant for some reason - please see the latest article on the Implants page. It offers one possible alternative. Jon.


Barb M, February 27, 1999 - Hello to all, It's been a while since we've posted. I just wanted to see if anyone else had seen the segment on one of those news shows the other night about the new pump DeBakey is pioneering. It is called the DeBakey VAD and they have already performed 4 implants of it in Germany. They are using it to buy time for heart failure patients awaiting transplant, but are still fine tuning it for permanent use. It is hooked up to the left ventricle and gives you better blood flow to the body. They think it will be especially useful right now for people who are too weak to make it through a transplant. This helps them get a little stronger and it seems to make a lot of sense. Did you ever get that weird feeling when you see, hear or read something - like it was meant for you? Well, that is exactly how my husband and I thought while watching, like this will one day be the solution we have been looking for. My husband hates those news shows and very rarely watches them, so there must be a reason he turned that one on! Maybe it is just because that is one of our son Adam's major defects. He only had one ventricle so this makes sense for him, but we got a very weird feeling watching this. Maybe also we had been enduring a string of bad days, 5 in a row, entailing 3 missed days of school. That is the most bad days in a row ever and also the closest. His last 2 bad days were only in January. Well, he seems to have regained his old self, back to school today and finally back on reading these posts. He really enjoys some of the information. Well, sorry for rambling on. I hope this info helps someone out there. PAMorgans@aol.com


Jon's February 27 reply to Barb M's February 27, 1999 - Hi all, Due to the amount of e-mail that show is generating for me <g>, I'll address it here. Debakey invented the first usable LVAD in the 1930s and he is now in his 90s. The pump is different than other LVADs for 3 reasons - it is very small (smaller than a quarter) and very simple, without a lot of moving parts to wear out or fail. It is also cheaper to manufacture, possibly as low as $10,000. On the other hand, I read a speech at a medical device fair the other day by the CEO of the company (MicroMed technology) which bought the license for the Debakey Pump from Debakey, Noon, and NASA (who developed it). He said it would be priced competitively. That means it will be cheaper than others, but not much - just enough to make insurance companies prefer it. That may limit our choices when we need an LVAD, so let's hope that if it works, it works really well! <g> It will probably cost about $40,000. Other LVADs currently cost $50,000 to $75,000 in the USA. It is not expected to last more than 5 years without replacement and is currently being tested in calves in the USA, in Texas. The first human implant was done in Europe last November. A few Urls to check are:


Tina ?, February 27, 1999 - Hello everyone, I just came out of the hospital. I had a bad virus that made my heart rate go sky high to 140bpm and a fever. I am feeling a little better now. It also turns out that my white blood cell count was fine - that was a lab error.


Bill D's February 27 reply to Unknown's February 25, 1999 - Hi Bashful, <g> I looked at all the side effects of furosemide and your ACE inhibitor as listed in my Mayo Clinic Pharmacist CD. Nothing about dry eyes but, if you had a dry mouth that's a symptom of your potassium geting too low! Welcome to Jon's Place. Next message maybe you'll tell us your name. <g> Bill. billdog@gate.net


Bill D's February 27 reply to Keisha's February 25, 1999 - Hi Keisha, Welcome to Jon's Place! I'm so glad you found all Jon's information that's hidden under Site Index! I was wondering how come you lost your insurance 3 months after the doctors diagnosed CHF. Those insurance company bureaucrats must get bonuses when they get out of paying claims! I think you'll find those guys on the transplant team are experts on improving your heart's performance. Many of us were so much improved we got kicked off the transplant list for years! Did you manage to get insured again? Bill. billdog@gate.net


David ?, February 27, 1999 - Hi, Has anyone taking Coreg done any good? I have DCM and CHF, and an EF that has gone from 7% to 19%. I think it's Coreg - do you? I would like to talk with someone who has this. God bless you all! pamdavy@accessatc.net


Chuck N, February 27, 1999 - Hi, Just a note to thank all the people who responded to my recent first post. It is so heartening <g> to feel the support of those who understand. I wish I had posted sooner but I think I was afraid to acknowledge that I was not getting better and admit that something had to give with my work life. I am seriously considering applying for short term disability, resting more, and waiting to see how I feel in 6 months. I believe the new clinic I have been attending is excellent. At least they specialize in CHF and make me feel important. They have given me a lot of printed information and have regular telephone contact with me. It has also been good to be close to my parents and aunt, all in their 80s. I did not mention my age in the earlier post. I am 47 and have two daughters. My best wishes to all of you. You can and do make a difference! You have touched me deeply. Chuck N, EF 31. ruthlin@hctc.net


John Rice, February 27, 1999 - Hi, I am 30 years old and have been diagnosed with an idiotopic cardiomyopathy. I also have atrial fib. I have done ok but it has just been 2 months and I am scared out of my mind. I have no stamina and I can't seem to make myself slow down sometimes. My meds are Coreg, Lasix, Vasotec, Coumadin, Cordarone and K-dur. This does not seem fair since I have always been healthy and I am so young. I would like to join you guys and be able to talk to someone who says more than how is it today, John? They are going to try to cardiovert me into a normal rhythm soon and this also scares me. I have dropped 35lbs since I was diagnosed and I think I will not last. I would appreciate any insight you may have. Thank you, John M Rice. jmrice@ipa.net


Linda ?, February 27, 1999 - Hi, and Thank you all. I was going to say that you can't know what your encouraging e-mails have meant to me. I was going to say that you can't possibly know how very low I have been but you do know. I was going to say that if I can ever help you, I will but you already know that too, so all that is left to say is Thanks. lreha@webtv.net


Howard ?, February 27, 1999 - Hi, I have been told I have an enlarged heart but possibly because I'm 79 years old, this hasn't drawn much attention, at least to date, from the medical profession. None have told me I have CHF, but if lost energy and physical stamina are any signal, I'm suspicious!


Don ?, February 27, 1999 - Hi, A year ago I was diagnosed with CHF and cardiomyopthy. My EF was around 20. Now it is better than 30 but I don't have the congestion anymore and quit taking the pee pills several months ago. Does that mean I'm not in CHF anymore?


George M, February 27, 1999 - Hi all, I just got back from my first doc visit since I left the hospital. I was told my EF was 33%. He told me I could do anything I felt like doing exercise-wise but not to work out with weights. I only have to take Zestril and Lanoxin. He told me I'd be on these forever. I go back in 6 months. I think I'll have more questions to ask by then. I wish to thank all of you for your posts as I was able to get a lot of questions to ask my doc from them. gtmurray@clover.net


Lynn D's February 28 reply to James L's February 27, 1999 - Hi James, If you are not having angina, you may be having intercostal chondritis. It's a spasm of the muscles around the ribs, especially near the heart. Some of us have the ribs over the heart sticking up farther than the ribs over the right side. It's called a displaced apex. Whenever you sit awkwardly, twist or pick up an odd sized object, it pulls on the ribs. I thought I was having a heart attack because I could barely breathe. A physical therapist can show you exercises to relieve this. We are not supposed to use anti-inflammatories like Motrin but sometimes they let you take one tablet and the pain is gone. Hope this helps. lynndaniel@mindspring.com


Al ?, February 28, 1999 - Hi, I am a CHF patient and have been for 5 years. I have experienced pain in my right knee and wondered if it could be associated with my medication. No other joints are affected. I am 64 years old and have an EF of 13. alien@means.net


Al M's February 28 reply to Jon's February 27, 1999 - Hi Jon, I have no idea if the same. I asked my trial contact specifically to spell it and she came up with Moxcon. I don't even know what Phase it will be tested. I made an assumption, probably shouldn't have, that it was Phase 3. I'll ask on Monday and report back. Also, I sort of thought that if a drug company requested the test that vast majority of time it was a new drug, whereas if NIH requested a trial it frequently was an already approved drug being tested for some other than original intended use. The Moxcon thing was requested by drug company. I may be totally off base on that assumption as well. Al M. ajmiii@web-access.net


Jon's February 28 reply to Al M's February 28, 1999 - Hi Al, I hear of so many drug trials I can't keep them straight, so I try to pin down exact drug names to avoid confusion later on my part. Many drugs are approved for one indication and then later tested and approved for another, so I can never tell if a drug is new or not by who asks. It all gets very confusing, mainly because of the sheer volume of drugs being tested for one thing or another, all the time. Jon.


Linda O's February 28 reply to Linda ?'s February 25, 1999 - Hi Linda ?, Please tune in each day and see how we all help each other with encouragement and prayer. I do know how you feel and I hate the scary and not knowing feelings too. You might like this:
     "Good Morning! This is God and I will be handling all your problems today. I will not need your help. So have a good day."
      It is something to think about. Linda O. norvalo@clarinda.heartland.net


Ben B, February 28, 1999 - Hi, I have been on short term disability for 4 1/2 months now and am applying for long term (rest of my life) disability through my company, which looks like it will approved. While on the plans, they allow me to work as much as I can and stay disabled. They have told me that with my numbers I will never be taken off this. Here's my dilemma. My job is basically doing what I'm doing right now, sitting at a computer and typing stuff like programming, database stuff, etc. My company has said I can set my own schedule, even do some at home if I want to come back. Right now, I can't honestly say that there are many days when I couldn't do this at least 4 hours, plus I like it. Now, finally, the question: I have heard that while disabled, you can't be laid off. I can't believe this is true. This would mean that once disabled, your company would have to pay your health insurance for life. This sounds impossible. During my disability, my company had 2 layoffs, which missed me. I am afraid they are trying to trick me into coming back to lay me off. Anybody ever heard that you can't be laid off while you are on disability? bdbrinkman@juno.com


Al M's February 28 reply to Brenda H's February 25, 1999 - Hi Brenda, Sometimes those automatic machines will err, particularly if you have a-fib or arrhythmia. The machine expects to hear a normal heart beat and can easily be tricked. The same happens with the automatic ones they try to use on me everytime I go for a checkup in doctor's office. They have to use the old manual BP testing on me. I've had the auto ones in drug stores imply that I was dead, with the reading being 80/13 and the little window that says "heart rate" was blank. That's not a real good sign if you otherwise felt okay at the moment. I also had an opportunity to talk with a technician who was adjusting the machine at an Eckerd's, and he said from time to time they need adjustment. Hmmm? Like when? Right after I've used it or before? Eventually, you'll sort of know what you feel like when they take a real BP and use that as something of a gauge. I had one of those home testing machines, and it had the same problem. It gave really strange readings when it did decide to give readings. Does anyone want to buy a used (slightly) home test machine? Cheap. Hang in there. Al M. ajmiii@web-access.net


Gus R's February 28 reply to John Rice's February 27, 1999 - Hi John, How is it today? We recently established that I'm nuts, but here's my 2 ¢ worth on your condition anyway. ;-) If you are just 2 months into this world, I think you can reasonably expect your outlook to improve as more time passes. Speaking for myself only, the fears and depression have lessened, even though physically I have weakened since I was diagnosed in September of 1992, at age 49. One doesn't like it any better but the "Why Me" goes away a little and one tries to establish a new life.
     I've been electrically cardioverted (zapped) a few times and found it to be a painless and simple procedure. Others here have written some frightening stories about their zappings so a few questions to your doc might be a good idea before you do it. I would have 2 main concerns and number one would be that large (about 6 inches square) pads similar to the ones used in EKGs should be used instead of the paddles. I've always had the pads and have received only slight redness where they were, which was not painful and went away in a few days. Others have written about very nasty burns from the paddles, which are perfectly acceptable in a life threatening situation, but seem inexcusable in a planned cardioversion.
     My second concern is with sedation. I asked for, and received enough (of whatever it was) joy juice that I was talking to the techs one minute and the next thing I knew it was over. Others here have written about being aware of everything. Their descriptions vary from slight pain and fear to real horror stories, so I see no excuse for it in a planned cardioversion.
     The downside of the zappings for me was that although they have always worked, the problem that caused my a-fib was still there and it always came back. Once before I got to the parking lot, with my longest a-fib free period being about 6 months. I also have something to say about one of your meds. I am not suggesting that you or your dox are doing anything wrong but think you should be aware that Cordarone has some possible nasty side effects. Jon has some information on this here and I think there is also a danger of damage to one's vision from it. My a-fib has always came and gone but has recently gotten worse (more often, for longer periods) and I am seriously considering RFA but not Cordarone. Of course we have established that I'm nuts, so don't let me influence you, because I'll probably try nothing new at all, which might be the biggest mistake of all. Best wishes, Gus R. gus13@net66.com
 
Jon's Note: Gus is no crazier than I am! Oops, no insult intended, Gus


Roz S' February 28 reply to John Rice's February 27, 1999 - Hi, As I am 75, you may want to discount information relevant to a 30 year old but I felt your fear and disbelief and thought a few words might be useful. First, I don't know if you are fearful of the cardioversion itself but if so, I have been with patients who went through the procedure. My husband's was unsuccessful but that was 32 years ago! He was pleasantly sedated and remembers the experience as "quite nice, thank you." We were disappointed that he was still in atrial fib but his cardiologist has has also had it for 15 years. Your idiopathic diagnosis probably means some blasted virus may have done this to you, which is a bummer, and you may have to take some meds the rest of your life. I have CHF and am old so that I can't really empathize completely but from my personal experience, my CHF 2 years ago left me with a depression the likes of which I had never known before. Check the literature, because antidepressives made an enormous difference in my life. I had no idea what the term "clinical depression" involved and feel that too many physicians assume it is a normal part of aging or illness. There are correlations with heart problems and you might want to bring this up with your cardiologist. I realize I have no business giving motherly advice to someone whose medical problems I do not know but I wanted to try to comfort you about the shock this must have been. Life can be hard. Hang in there John, and keep in touch. RWarriston@aol.com


Joe's February 28 reply to George M's February 27, 1999 - Hi, This is my first post to this site. Thanks Jon, for maintaining such a great resource. I was diagnosed with DCM 5 years ago, with my EF varying from 30 to 45, heart slightly enlarged and weakened left ventricle. Higher number was obtained by MUGA and now appears to be stable. My only med is Coreg for the last 5 months, plus numerous supplements and approximately 150grams protein daily and very little high glycemic index foods. I am 61 with no other health problems. I have been to 4 cardiologists, including a Cleveland Clinic cardiomyopathy specialist. I have gotten different answers regarding exercise from the four doctors. The Cleveland Clinic doc says do anything I want. My first cardiologist said do only moderate aerobic work. He knew very little about exercise, nutrition and fitness so I left him. My current doc says do anything I want except use only very light weights in any weight lifting, but doesn't appear to have any specific medical research to support this.
      Six months ago (about one month before I started Coreg), I returned to fairly heavy weight training 3 times a week (I have 45 years experience in it) and have noticed all my symptoms - PVCs, lightheadedness, shortness of breath, tiredness, paresthesia in extremities) have almost disappeared. Reasons I am doing weight training are reduction in symptoms, I think it will assist heart in circulation by keeping up muscular size in arms and legs, it greatly helps my mental health (don't know if this is due to hormonal increases or obvious physical appearance improvement), recent research indicates weight training (performed in certain manner and using sufficient resistance) increases growth hormone secretion and research indicates growth hormone increase improves DCM. My question for George M, 2/27/99 post, and anyone else with info on this, did your doctor say why no weightlifting?
     One item I want to pass along: Vitamin E is recommended by many for heart problems and prevention. I found in the literature info from Dr. Shute, who had a heart clinic in Canada in the 1950s and 60s where he treated heart problems with Vitamin E. He found that increased intake of Vitamin E (over around 200 mg/day) caused those with weak left ventricles from rheumatic fever to go into CHF. He was very cautious in using vitamin E with those patients. From his book, I don't think DCM was diagnosed at that time or it was called something else, but based on his findings I reduced my vitamin E intake to 200 mg per day. Krait008@aol.com


Jon's February 28 reply to Joe's February 28, 1999 - Hi Joe, I am way too tired today to go into it at length and I would not even post this type "refutation" because it sounds negative no matter how I phrase it, but there are other ex-lifters like myself reading, who would love to go back to it but don't want to injure their chances for longer life. Here's the short version

  1. You are only on Coreg. This indicates that you currently have no severe underlying cardiomyopathy. For whatever reason, your doctors do not fear heart failure in your case. If they did, you would also be on an ACE inhibitor at the very least. CHF now uses a 4-drug regimen for standard medical therapy. This means that your condition may be very different than that of most us here, so we should be careful not to compare apples and oranges
  2. More skeletal muscle mass increases the workload on your heart - the more skeletal muscle that must be supplied with oxygen, the more work the heart has to do to supply it. Tone is more important then size in a person with heart disease. A really weak heart may enlarge while trying to supply more oxygen to stressed muscles. This stretching of the heart's own muscle fibers allow it to contract with more force but it wears out the heart very quickly, resulting in CHF and death. Transplant patients need resistance training to build bone density - to fight the prednisone, which "wastes" bone. Cardiac muscle does not build for any reason
  3. Mental health based on appearance might be called vanity, not mental health. Sorry, but that's how I see it, and I pumped iron for 15 years myself. And when you're as ugly as me, you need all the vanity you can get. ;-) I don't think hormonal increases are necessary for mental health. At least, I am much happier now than I was when I was healthy and pumping a considerable load of iron 6 days a week, and throwing 40,000 pounds of red oak through a double roughing planer in a lumber mill every day to boot, so I don't think it is.
  4. Growth hormone for CHF has not been proven as a viable alternative to medical therapy for several reasons, even though a very small (7 patients) initial study looked promising. Please note that it was 4 IU given subcutaneously daily. I have never found reliable literature showing that the body produces this amount of pure HGH during resistance training, so I can't further address this point

     Vitamin E thins blood and that's why those with weak hearts, especially bad valves, may go into CHF when taking mega-doses. This is also a fat soluble vitamin and thus excess builds up in the body instead of being excreted. That makes mega-doses very, very dangerous. Jon.


Jay Q's February 28 reply to Howard 's February 27, 1999 - Hi, Howard ?, Hearts enlarge when they are overworked. Your doctor should be doing his best to uncover the cause. If he isn't willing or able, have him refer you to someone who is. Cheers, Jay Q, age 75, EF 10-15%. affinis@aol.com


Liz J, February 28, 1999 - Hi Jon, I am so glad to hear Linda's surgery went well,and she is on the road to recovery. Prayers go out to you and your family. I was going to try to answer everyone individually, of e-mail received when I had surgery. I have not been strong enough yet to answer but a Very Big Thank You to all. The love and support from this group has meant so much to me. Liz J. EJa83911@aol.com


Jon, February 28, 1999 - Hi everyone, I think I have booboos on the Australian Chat times on the chat page. If anyone from down under can give me corrected times, I would appreciate it. Jill M, maybe you could check the South African time for me, too. I thank you all, as time zones really confuse me. Jon.


Rick M, February 28, 1999 - Hi All, I'm sure you've all noticed how Bill D always advises the newbies to Read The Manual. Well, that is very good advice for new folks, but I just discovered it's not bad advice for the old veterans, as well. At age 74, I'm by no means the eldest regular at Jon's Place, but I'm old enough. <g> I can remember things that haven't even happened yet. I'm expecting a visit from some close family members so I thought it might help them if I printed out The Manual so that they could read it and understand that I'm not going get over this little thing any time soon. Anyway, I started to re-read The Manual and discovered that it was a very productive thing to do. I suspect that Jon gets in there and updates it from time to time. Try it, old friends, it's worth your time. rearadml@iu.net
 
Jon's Note: Updated it 3 times in the past month. :-)


Roger H's February 28 reply to James L's February 27, 1999 - Hi James, I know what you are talking about. I also have them and I am sure that it is a pain in the lungs. I had a collapsed lung when I was about 23 years old and the pain is similar except the pain went into my arm as well with the lung collapse. I have been having the pains since I was diagnosed with the heart problem but I also have a stomach acid problem which I take pills for and they said it was that, but I still get them and they are getting worse, stronger when I do get them. I had them when I was in the hospital on the moniter and nothing showed up and nitro didn't help either. The last time I mentioned this to my doc and cardiologist, they believed it to be muscle spasms but I am sure they are not. I will be bringing it up with my doc next time I see him and hopefully get some answers or tests done. I will let you know if I find out anything. healman@hotmail.com


Steve ?, February 28, 1999 - Hi, For those applying for SSD, let me tell you my experience. In June of 1998, I applied for SSD. I was told that there was a 6 month waiting period but since I would have no income until December, they would give me $575 a month SSI plus Medicaid. That was fine as medicines and doctor costs were running $600 a month. In December, I got my first SSD check in amount of $1,300 along with a letter telling me I would no longer be getting Medicaid because my payments wrere so high! How's that for a kick in the old behind?! Now I have to spend half my income on medicines and doctors. What a wonderful program SSD is! By the way, if you survive for 2 years on SSD, you can get Medicare. The reason for the 2 year wait is that the government figures a certain percentage of those getting SSD won't live to get the Medicare. sc243@aol.com


Bill D's February 28 reply to David ?'s February 27, 1999 - Hi David, Welcome to Jon's Place. The answer to your question is right in front of you. Either click on Site Index at the top of this page or pick "Coreg" from Jon's "Rolodex!" You'll find answers to all the questions your doctor hasn't time to answer. Then come back and ask us a hard one. <g> Bill. billdog@gate.net


Nancy Williams, February 28, 1999 - Hi, In 1986, at the age of 46, I had bypass surgery and went on with my stressful life as if nothing had even been wrong. In 1991, I had another full blown heart attack. When I woke up in the intensive care unit the next day, I was shocked when the doctor told me there was nothing that could be done except a heart transplant. I stupidly thought that he would do everything necessary when the time came that I would need the transplant. I was so wrong. He never referred me to an appropriate hospital for evaluation to be put on a transplant list. For over a year, he allowed me to just grow weaker and weaker. My ejection fraction was 14%. I lost a tremendous amount of weight. Finally in September, I called the GP who had been taking care of me and asked for another opinion. This time I took my MUGA and echo results to the new doctor in October of 1992. His first question was how did I walk into his office. His second question was how long had I been on the transplant list. I asked a silly question. "What list?" Needless to say, he was on the phone to UPMC in Pittsburgh. Within days, I was scheduled for evaluation. My first thought was that I had already wasted a year and my time was running out. Even if I did make the list, I would never live long enough to get a heart. I was nearly right.
     On December 6, 1992, I called the ambulance. I was filling with fluid and couldn't breathe. I was put into ICU on dobutamine but by now I was almost too weak to walk. Around the 14th, I had another heart attack. I had a living will that said "no artificial life supports." I was ready to die. I did not want to be a living vegetable. My loving partner overrode my wishes because the doctor explained that as long as I was on the list, there was hope. If they took me off the list, they would let me go. Each Friday, it is my understanding that decisions are made regarding who stays on the list. Someone must have put up a fight to keep me on it, because they told George that if I continued to fail they would take me off the list and life support, and let me go. This was told to him Friday the 18th. He left the hospital so he could call our families and prepare them for what might happen.
     At 2AM, Dr. Armitage came into my room, removed the respirator and informed me that they had a heart for me. They then brought a portable phone into my room for me to call George and my son. You can imagine the shock he had hearing my voice. I went into surgery at 9AM and came out close to 3PM. There was a leak in one of my arteries so I was taken back into surgery and did not come out until 2AM the following morning. Because I was so weak when I received the heart, I was in the hospital until January 14. My return to health was slow but steady. I have been so blessed because I have not had any rejection. My quality of life is great. I only wish that each person in this world could understand how important it is to say and do each thing every day as if it was to be their last day on earth. What a wonderful world this would be. God bless all of the caregivers out there and God bless all of you who are waiting. Nancy. nawggg@cobweb.net


Joy R's February 28 reply to David's February 27, 1999 - Hi, I think Coreg is the new wonder drug for CHF if you can tolerate it. It has given me more heart function and made my life more tolerable. Unfortunately I have very low blood presure so I have to take a low dose but I infuse with dobutamine, which brings my blood pressure up and keeps me in balance. It takes a little time, I think, for the drug to start making a difference but I'll bet your EF will improve and you'll feel better if you stay on it. wapalaremi@aol.com


Joy R's February 28 reply to John R's February 27, 1999 - Hi, Hang in there, it does get better after you have been on the meds for awhile. Don't worry about cardioversion, you should be medicated enought not to be aware of it. It does seem unfair to get a diagnosis like you have and be so young but I find, take it day by day, and try to stay positive. I am so much better now than when I was diagnosed in 1997. Taking the right medicines and no cigarettes have made a huge difference. Good luck to you. Wapalaemi@aol.com


Helen ?, February 28, 1999 - Hi, I have had CHF for about a year, along with diabetes, high BP and an enlarged liver. My EF is 35%. Is that good? Can I expect it to get worse? My white blood cell count is 14. Is that bad? My doctors are not any help. They just keep telling me to take another pill and see you in a couple of weeks. I hope you can lead me to some answers. I am only 37 and a mother of 3. I need some answers. labatr@aol.com


Karen K's February 28 reply to Don's February 27, 1999 - Hi Everyone, I haven't posted here for awhile and thought I'd try to respond to Don's question. Congestive heart failure is a result of cardiomyopathy that is not controlled by diet and medications. I was diagnosed with cardiomyopathy 8 years ago after I went into congestive heart failure. I am no longer in congestive heart failure and I, after over 7 years, was taken off my diuretic. Fortunately, I have not retained fluids. I do watch my salt intake very closely.
     My father died of CHF when he was in his 50s following a diagnosis of cardiomyopathy. He lived for 2 years after the original diagnosis but was never even close to being well. On the other hand, I have been fortunate in that my initial ejection fraction of 19% improved to 38% and is considered stable at this time. This, of course, means my heart is not functioning as it should but it could be worse. My original prognosis was poor but I truly believe that God wasn't ready for me yet; that he thought I still had things to tend to on earth.
     In 2 weeks, I will be flying from Iowa to sunny California. I will be there at least 3 weeks. My mother is having a hip replacement. My sister was to have been with her but my sister has been diagnosed with breast cancer, had a mastectomy, and now is receiving chemo which will be followed by a stem cell transplant. I am in the process of gathering information and have an appointment for genetic counselling as my sister's tumor had a genetic marker and my mother had a mastectomy about 20 years ago. There is some difference of opinion as to whether I will be placed on prophylactic medication or not, in part due to my cardiomyopathy. I hopefully have answered your question, Don. If not, I'm sure others will respond. Karen K. karenk@muscanet.com


Virginia R's February 28 reply to Al M's February 27, 1999 - Hi Al, Did you say you were living in Texas? Could I ask you where you met your cardioquack? I'm comparing notes for my father. I live just south of San Antonio and am wondering if your doc in SA will see my Dad. Please e-mail me. I'm eager to get some more info. Thank you. giniroberts@hotmail.com


Bill D's February 28 reply to Don ?'s February 27, 1999 - Hi Don, It's great that you are able to dispense with the diuretics and your body isn't taking on water. At 30 something ejection fraction, the underlying problem must be still there. Does your cardiologist have you on other medications? If I were you, I'd study up here at Jon's Place. Click on Site Index at the top of this page. It aint over 'til the fat lady sings! Bill. billdog@gate.net


Bill D's February 28 reply to Howard ?'s February 27, 1999 - Hello Howard Question Mark <g>, Your suspicions may be well founded. Are you seeing a cardiologist? What medications are you taking? Welcome to Jon's Place. Click on Site Index at the top of this page and you can learn all about what you have. The next time you see your doctor, your questions will show him you know your onions! He'll probably hold his head in in hands and say: "Oh No! Not another guy from Jon's Place!" Bill. billdog@gate.net


Bill D's February 28 reply to John Rice's February 27, 1999 - Hi John, Welcome to Jon's Place. We're glad to have you aboard our leaky old boat. <g> The more we learn about CHF, the longer we can live with it. The best place to learn is right here. Click on Site Index at the top of this page. You might start your education by reading The Manual. Some of us print it out for folks who don't understand (the ones who ask you, "Are you better yet?"). You'll be able to find answers to all of your questions including the ones you need to ask your doctors. You'll find many of the people who post to this forum are younger than you are, John. Most all of us were scared at first. After a while, you'll find this disease tests your patience more than your courage. Bill. billdog@gate.net


John Rice, February 28, 1999 - Hi, Thanks to everyone for the encouragement. I can tell you a little about my condition. My EF was 10 in the hospital and is now about 15. Coreg is supposed to be a wonder drug and they put me on it immediately. It has been hard taking 7 meds, I always feel something from the drugs. My doctor won't even talk about transplant because he says I am going to get better. I hope he is right. I just now have convinced myself that I am really sick and I won't be able to go back to my business. I took over my dad's company when he died and now I can't work, which is very hard. It is still running though, so at least I know I am not too important. I want you all to know that finding this place really gave me some hope and that helping people is one of my favorite things, so I will be here. jmrice@ipa.net


Roger C, February 28, 1999 - Hi everyone, I just wanted to let everyone that has to take Coumadin know that there is a ProTime Microcoagulation System out now that you can test your own blood thinner level at home. It is made by Teledyne. It is a little bit on the expensive side at $2000 but it saves me from having big bruises from when the blood tech does a number on my arm. The blood is taken from a finger stick with a lancet. It takes about 6 drops put in a miniature cup that is put on a circuit board that tests it for clotting time and INR. I had a little problem with the first reading because it was way too high. I called the help desk and was sent a calibration device and walked through the calibration on the phone.
     Also, I have been reading about people going on half and full time Disability. I just finished a year of working half-days and it got to the point where I would drive home with a knot as big as my fist in between my shoulder blades (stress related). I finally told my cardiologist I was ready to go on full Disability. I worked my last day Thursday a week ago. My manager and I had a talk about how it would give me time to do some walking and try to get my diet more on track. Be well, Roger C. rdconnel@bellsouth.net


Al M's February 28 reply to Steve ?'s February 28, 1999 - Hi Steve, It would be funny, if not sad. Another "strange" situation is let's say you manage to earn $500 in part-time work, no problem, you get to keep it. If you earn $501 in part-time work in a month, you lose all SS Disability for that period. Dumb? Or how about this one? Let's say you were fortunate enough to win a state lottery. Let's say (nice to think about) you won a one time payment of $1+ million. It makes sense you'd lose your SS Disability, however, only for the month that you received the big check. The next month, if you didn't earn $501, you go back to getting your normal SS Disability. On the qualifying for Medicare, another rather dumb situation, like what happened to me. In August of 1996, I qualified for SS Disability. That was the date they said I qualified. Naturally, I didn't get money until February of 1997. I knew about the 24 months "from disability qualification" so to confirm, I called and said "I see, so I will get Medicare in August of 1997, 24 months after I was judged disabled?" No, I was told, I would be eligible in February of 1999. No amount of argument could either make them understand or their conversation make any sense to me. We all agreed that I became eligible in August of 1996, then 6 months worth of waiting to get money. Dumb, dumb?
     Much of the problem is that SS guidlines are so out of date they frequently don't even know what treatments or ailments are floating around. The other "funny" I noticed when I got the approval, after 9 months of waiting just to be approved, was a pamphlet that explained that "re-evaluation" was necessary from time to time. In the spirit of dark humor, it said: 6 month re-evaluation - condition permanent but expected to improve, 12 month re-evaluation - condition permanent but likely to improve, 3 years - condition permanent but might improve, and the last one, my own and personal favorite - 5 year re-evaluation - condition with no hope of improvement. Yikes! Oh well, if you can't laugh at something, you've had a really bad day. Al M. ajmiii@web-access.net


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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