The paperwork never ends The Archives
March 16-31, 2002 Archive Index

Tom P's 3-16 reply to Billy's 3-10     getting on with life while alive
Gino's 3-16 reply to Marlito's 3-11     do life style changes help?
Valerie R 3-16     pacemaker experience & some questions
Marlito's 3-16 reply to Jon's 3-11     I do need to reduce sodium intake
Marsha H 3-16     are there reliable weight scales?
Kaye 3-16     seek Kerlone-related CHF experiences
Steve Hansen 3-16     don't give up hope!
Valerie R 3-16     seek pacemaker experiences & more
LaRae Townsend's 3-17 reply to Steve Hansen's 3-16     what Coreg dose do you take?
Doreen 3-17     dropping EF - seek Coreg experiences
Carolyn C's 3-17 reply to Tony T's 3-3     allergy and sensitivity resource
Noel 3-17     heart transplant & Demadex questions
Tom S' 3-18 reply to Steve Hansen's 3-16     different CHFers react differently
Steve Hansen's 3-18 reply to LaRae Townsend's 3-17     my views on getting better
Jon's 3-18 reply to Steve Hansen's 3-18     this is not so cut and dried
Anita C's 3-18 reply to Noel's 3-17     my transplant experience
Ben B's 3-18 reply to Tom S' 3-18     which posts and more
Ingrid 3-18     my exercise experience
Myrtle C 3-18     bending is huge problem - any ideas?
Al's 3-18 reply to Billy's 3-10     I'd suggest looking into a heart transplant
Hal 3-18     how do I lose weight?
Jill M 3-18     pharmacy error - what do you think?
Tom S' 3-18 reply to Ben B's 3-18     surprising deaths
Cecil 3-19     seek amiodarone experiences
Jon 3-19     mailing about exercise
Joseph P's 3-19 reply to Cecil's 3-19     amiodarone experience
Tracey C 3-19     my exercise experience
Sharon P's 3-19 reply to Cecil's 3-19     cutting pills in half
Paul Davis 3-19     seek glutamine info
Pauline 3-19     heart anatomy questions & more
Bruce Weir 3-20     is my diuretic working well enough? & more
Sajid 3-20     seek info to help my dad
Cat 3-20     herbal supplements question
Joseph P's 3-20 reply to Sajid's 3-20     maybe someone can help
Valerie R's 3-21 reply to Bruce Weir's 3-20     diuretics, diet, fluid retention
Joanne R's 3-21 reply to Cat's 3-20     natural remedies
Joe S 3-21     exercise conundrum
Jon's 3-21 reply to Joe S' 3-21     exercise recommendations
Tom 3-22     diuretic experience
Jon 3-22     diuretic suggestion
Bill 3-22     early, elective retirement questions
Joseph P's 3-22 reply to Bill's 3-22     COBRA health insurance
Ben B's 3-22 reply to Bill's 3-22     disabilty, health insurance
Jacky 3-22     question about catching your breath
Anita S 3-22     seek EPS experiences
Tom S 3-22     seek heart size & recovery info
Joe S' 3-22 reply to Jon's 3-21     my doc won't say
Jon 3-24     mailing list, weight loss
Valerie R 3-24     doing well, then - wham!
Vickie's 3-24 reply to Anita's 3-22     EPS experience
Joseph P's 3-24 reply to Anita's 3-22     EPS experience
Larry's 3-24 reply to Jon's 3-22     please give a reference
Valerie R's 3-25 reply to Jon's 3-24     seek flash pumonary edema experiences
Joyce 3-25     does anyone else get hot flashes?
Don Grande's 3-25 reply to Jon's 3-22     labeling on my Lasix Rx
Ruthie A's 3-25 reply to Valerie R's 3-24     flash pulmonary edema
Valerie R's 3-25 reply to Ruthie A's 3-25     flash pulmonary edema
Mel's 3-25 reply to Joyce's 3-25     sweats
Mel G's 3-25 reply to Valerie R's 3-25     flash pulmonary edema
Betty's 3-25 reply to Joyce's 3-25     sweats
Jon 3-26     mailings, Ticket to Work program
David Wilson 3-26     has anyone had weight reduction surgery?
Valerie R's 3-26 reply to Al's 3-19     why a heart transplant?
Betty 3-26     CHF doctors and edema questions
Jon's 3-26 reply to Betty's 3-26     CHF doctors and edema
Karen K 3-27     Lasix and spironolactone comments
Anita C's 3-27 reply to Valerie R's 3-26     making decision to transplant
Jon's 3-27 reply to Anita C's 3-27     making decision to transplant
Barbara J 3-27     liver pain
Jon's 3-27 reply to Barbara J's 3-27     about that liver
Emil's 3-27 reply to Jon's 3-26     donating, sick of being sick
Jon's 3-27 reply to Emil's 3-27     donating, being sick of being sick
Betty's 3-27 reply to Jon's 3-26     edema, CHF specialists
Jill M's 3-27 reply to Valerie R's 3-26     why no Coreg? and more
Clara D 3-27     need help keeping good low-sodium cheese available
Mide 3-27     how do I gain weight? need EPS info
Natalie K's 3-28 reply to Betty's 3-25     hot flashes, low-sodium cheese
Chris' 3-28 reply to Bruce Weir's 3-20     retaining fluid in various locations
Valerie R's 3-28 reply to Jill M's 3-27     meds changes
Valerie R's 3-28 reply to Mide's 3-27     trying to gain weight
Joe S' 3-28 reply to Chris' 3-28     retaining fluid
Joseph P's 3-28 reply to David Wilson's 3-26     how did Coreg give you diabetes?
Tom 3-28     a heart failure specialist is the way to go
Sheryl C's 3-28 reply to Betty's 3-25     sweats could indicate diabetes
Mide 3-29     pregnancy and CHF question
Jon's 3-29 reply to Mide's 3-29     pregnancy and CHF
Jim T 3-29     seek hospice info
Bev T 3-29     keeping the sweats away
Susan 3-29     EF going way up then down - anyone else?
Mel G's 3-31 reply to Natalie K's 3-28     the sweats
Mel G's 3-31 reply to Susan's 3-29     some encouragement
Lori K 3-31     has anyone had these symptoms? & more
Valerie R's 3-31 reply to Lori K's 3-31     Boost/Coumadin warning, muscle loss
Kary Warren 3-31     seek CHF doc in Oklahoma
Karen K's 3-31 reply to Lori K's 3-31     Boost/Coumadin note

Tom P's March 16 reply to Billy's March 10, 2003 - Hi, I was hospitalized last April for CHF. Prior to that I was healthy as an ox, and perhaps as thick-headed. I have wrestled with this statistical "death sentencing" and now ignore it as much as possible. It's quality, not quantity. Whatever time you are blessed with, hold it precious. Shower the people you love with love, including yourself! Sometimes I have just let myself go in tears and felt great healing. Above all, let the sting of this fierce grace deepen your relationship with God. Shine on, Tom P.

Gino's March 16 reply to Marlito's March 11, 2003 - Hi Marlito, Of course you need some diuretics, but as Jon has added in his note, you must control (and possibly reduce) the amount of fluid and sodium in your diet first. Many times this simple rule lets heart failure patients reduce diuretic dose - or in your case the need to use 2 types of diuretics - needed to control edema and consequently, the risk of electrolyte imbalance and symptoms linked to high doses of diuretics. Have spoken about this with your doctor? Ciao.

Valerie R, March 16, 2003 - Hi everyone, I had mentioned that after 7 years, a cold sent me to Club Med. My cardiologist was out of town for the first several days and lots of changes were done with my meds. I was put on a sticter low-sodium diet and I had the Medtronics Insync ICD and pacer put in.
     I was fine in December and January after being in the hospital but in February I had serious problems. I had SOB almost all the time. I couldn't walk more than 4 feet without needing to stop. I couldn't sleep, not even on pillows; I had to sit up. My doctor agreed we needed to see if any changes made were causing this, and he said the easiest was the pacemaker. The pacer guy came out, said the third wire had not been working and changed it so my heart beats on its own. My cardiologist said that if my heart slows down a great deal, it will kick in but for now my heart is on its own, with its 15% EF.
     What I want to say is that within 24 hours I felt 95% better! I sleep like a log at night and am back to teaching my 8th graders. I still have a nasty cough at night that sometimes makes me SOB for a short while and I feel like I need to build some stamina. It's so wonderful to feel this good and I'm really frightened of ever going through that again, although I expect I will. I'm not even too upset that 80% of my wardrobe is too big for me. I'm down to 91-1/2 lbs and all my slacks fall off! I've gone from a Petite 6 to a 2 or 4.
     I would be interested in knowing if anyone else has had this experience with a pacer, or any suggestions on how to put on weight with a low-sodium diet! Valerie.

Marlito's March 16 reply to Jon's March 11, 2003 - Hi, I agree the main culprit in my case is sodium intake. I will work harder on that! I have restarted one mg Bumex BID but my weight is still going up.

Marsha H, March 16, 2003 - Hi, I have been weighing every day faithfully since I first found this site. Most of the time, it is stable or down a bit, but some days I have shown a gain of 8 pounds. Both my doc and I suspect the problem is actually in my little bathroom scales, which are lithium (lifetime) battery-operated. I would like to have scales that I can trust. Are there reliable products out there that are not the expensive balance type?
Jon's note: I have had very consistent results with the Taylor scales, where you stand on the glass surface set into the chromed U-shaped frame

Kaye, March 16, 2003 - Hi, I recently experienced a CHF episode, which my doctors attributed to a complication of the drug Kerlone. Does anyone have experience or info regarding heart failure triggered by this drug? It is normally used for hypertension, but my neurologist prescribed it to me for migraine headache prevention. Eight days into the treatment, my CHF occurred.

Steve Hansen, March 16, 2003 - Hi, Four years ago I was diagnosed with CHF. I had an EF of 18 to 20%, and a very large heart. "Heart transplant or death" is what the doctor said. I refused to believe and started walking immediately after getting out of the hospital, starting with less than 1/2 mile and slowly working my way up.
     My EF is now in the mid to high 50s and my resting heart rate is in the 30s and 40s, depending on how much Coreg I'm taking. I walk with a 30 lb pack for 5 to 10 miles most days. I have done a 3-day, 75-mile backpacking trip in the Sierras, and last September I backpacked the 200+ miles of the John Muir Trail in 14 days, crossing 14 passes over 11,000 feet in altitude and reaching the summit of Mount Whitney at over 14,450 feet.
     I have worked very hard to get where I am. I have walked through kidney failure, gout, and a lot of pain but now I can outwalk most people half my age. I'm 40 now and I plan on going adventure racing in the near future. Yes, I do have a lot of energy but I am not special. If I can do it, others can too, so don't give up hope! Great web site, Jon! Thank you for all the time and effort you put into it.

Valerie R, March 16, 2003 - Hi, Since I did my last post stating how much better I feel now that my Medtronic Insync pacemaker has been turned down to allow my heart to work on its own, I've been doing some reading on "pacemaker syndrome" but it is not as clear to me as the writing on this site. I do have a lead going to my left ventricle but the pacer checker told me it was not working. Only the right one is working.
     I go back to the surgeon on April 2nd. I fear he is going to want to go back in and try to place that left lead again. He spent 3-1/2 hours on it last time. Some of the articles on this syndrome say that leads on both sides are needed to prevent the syndrome and since my left wasn't working, this may be cause of all my fatigue and SOB.
     The trouble is that I don't want anymore procedures at this point. I feel good and am of the opinion that "if it ain't broke, don't fix it." I'd appreciate opinions and knowing if any of you have had this. Valerie.

LaRae Townsend's March 17 reply to Steve Hansen's March 16, 2003 - Hi, Your post was interesting to me because I have just started taking Coreg and feel much stronger. I have had many heart problems but it seems that CHF is my biggest problem now. Could you post what amount of Coreg you are taking in order for you to be able to walk such marathon walks? I am hoping that as I am able to increase my Coreg dose that I will feel even better, perhaps enough to start a walking program that will help prolong my life.

Doreen, March 17, 2003 - Hi, Eleven years ago I was diagnosed with familial cardiomyopathy - without symptoms - and I was told that I wasn't even a class one. My EF was around 48%. I was put on Vasotec right away. My EF went as high as 55% and then over the 11 years gradually declined down to 44%. I see my doctor every 3 months, try to watch my sodium intake and keep my weight down. Initially I tried to walk as much as I could, later switching to an exercise bicycle. I have generally felt good except for fatigue.
     A little over a year ago, my cardiologist decided to put me on Coreg (gradually). He said that this was recommended treatment now for patients in the Class one catagory of cardiomyopathy. He said it should keep me healthier longer. Well, I had my yearly MUGA a year later and my EF had gone from 44% to 37%. He had no explanation other than my condition was progressing. He suggested that I see a heart failure specialist, who changed my Vasotec from 10mg twice daily to 10mg in the morning and 15mg in the evening. My Coreg was not changed. I am still on 12.5mg twice daily. Another MUGA last month showed my EF at only 38%. I still have not experienced CHF, but am extremely tired.
     What I would like to know is why did I go from 44 to 38 in one year? He just says that this is the nature of the disease. Has anyone else experienced this? I am wondering if Coreg had anything to do with it. Should I have been put on it so early? I would appreciate any feedback.

Carolyn C's March 17 reply to Tony T's March 3, 2003 - Hi, Like you Tony, I have multiple medication allergies and so have stopped ACE inhibitors and Coreg. The docs - not my cardiologist - tried to make me out to be a mental case. Coreg increased my heart failure. I am extremely environmentallly sensitive and was diagnosed with cardiomyopathy after inhaling cement sealant and carpet fumes at work.
     Anyhow Tony, go to the chemical injury information network. They are the clearinghouse for environmental problems. They publish the Toxic Times and have been extremely helpful to me.

Noel, March 17, 2003 - Hello Jon and others, I am wondering how long it usually takes to get listed for a heart transplant after one has had all required tests and procedures completed? I completed all that was required of me on February 14, 2003 and have not been listed or notified that I'm not listed as of this time. Also, I have finally convinced my doctors to try to replace Lasix with Demadex but am waiting to receive the prescription in the mail. Are there any side effects to be careful of with Demadex? Thanks for all the help and interesting input from everybody. God bless you all.

Tom S' March 18 reply to Steve Hansen's March 16, 2003 - Hi, For the past 7 years I have been wrestling with CHF and find myself in a losing battle regardless of what I do. I am constantly amazed at how some people try to make CHF a one size fits all disease. It is far from that and what is sauce for the goose is not necessarily sauce for the gander when it comes to recovery or even methods of recovery.
     You found a regimen of brisk walking, hiking, etc., with a heavy load on your back to be your salvation from CHF. That really is nice for you but could well be a death sentence for someone else. All too often on this web site I have read of the death of a poster who decided to "fight the odds" and keep working at previous employment or continue with life's activities on an almost "normal" basis despite their low EFs.
     I got kicked pretty hard when I tried to do such normal things as taking my kids to church, or scout meetings, or even attending adult meetings, cooking, running normal household errands and shopping. I was slowly killing myself; not improving my health in any way shape or form. I have a greatly enlarged heart with an EF in the teens. That was verified again during my most recent week-long stay in the hospital - my first in 7 years.
     I think any endorsement of stressing the body physically, when one is suffering from CHF, should come from a doctor. I also question how an enlarged heart can be reduced without some form of surgery or appropriate prescription drug use, if it was that enlarged in the first place as verified by a heart catheterization.

Steve Hansen's March 18 reply to LaRae Townsend's March 17, 2003 - Hi, I take between 25mg and 50mg depending on my activity level. When I know I'm going to push really hard I take 50mg. Otherwise I go back and forth between 25 and 37.5mg, depending on how I'm feeling. I take more Coreg when I notice I'm anxious or having palpitations. I wasn't put on coreg until one month after getting out of the hospital and by then I was walking one to 2 miles a day. I worked my way up to 50mg and by that time I was walking 2 to 3 miles a day. I was sleeping about 14 to 20 hours a day the first 6 months or so. It seemed that all I did was walk, sleep, eat, and sleep. As time went on, it got better and I got stronger. Most doctors don't explain that the leg muscles are partly resposible for pumping your blood back uphill to the heart so strong leg muscles can overcome a weakened heart. Because my legs muscles are very efficient, my heart doesn't have to work hard for me to get around. I learned everything I could about my condition. My walking was the most important task and everything else came second. I walked every day I could, bumping the amount of time I spent on the trail up as I went along. I used to look like death by the time I got home from my walks. Now, most days I try to walk for 2 to 3 hours with my pack, and I come home feeling like I could run for miles if called upon to do so. Of course, my family was key. Their love and help - taking care of me when I couldn't and giving me the freedom to make the time to walk made the difference.

Jon's March 18 reply to Steve Hansen's March 18, 2003 - Hi everyone, Please do not jump into Steve's exercise ideas as stated in his post. I am very glad it helped him so much but many factors are involved, including cause and severity of heart failure, fitness level at diagnosis, distribution of muscle fiber types, other health problems you may have, your drug therapy, age, and more.
     Multiple factors go into returning blood to the heart from the lower body - called venous blood return. Rhythmic muscle activity acting on veins with the help of valves in the veins helps move blood back to the torso. This occurs during walking. The foot (planar) pump is also critical to venous blood return. Again, this comes into play during walking.
     Vein elasticity may be adversely affected in heart failure, which reduces your ability to gain maximum benefit from this effect. Gas transfer may also be adversely affected by heart failure regardless of fitness level, reducing your ability to exercise for long periods of time. A Vo2max test can help determine this. Both neurohormonal overactivation from heart failure and the blocking of that overactivation by drugs like beta-blockers can greatly affect your heart rate, breathing, and recovery during and after exercise. This all makes exercise programs widely different from one heart failure patient to the next, as Tom said.
     You definitely benefit from toning skeletal muscle in general because then the muscles act more efficiently in every regard. However, applying this in some blanket fashion to functional ability gets complicated as you start considering capillary function (they are often closed!), bypass shunts, the circulatory system during sleep and rest, the heart's actual pumping ability (hemodynamics), drug therapy, and so on. Muscle tone is very important but Steve is painting a very incomplete picture that could cause some CHFers to seriously hurt themselves.
     If you have ischemic heart disease (CAD), starting the exercise Steve describes the way he describes it could be dangerous. Please use the list of questions at the FAQ exercise page to find out from your doctor how and how much to exercise for you!
     Finally, I personally think it is absolutely nuts to vary your beta-blocker dose based on how you feel from day to day! Please do not ever do this. For reasons from blood sugar and blood pressure spikes to the up and down regulation of receptor activity (alpha and beta receptors), this is just a bad idea!
     Exercise is a vitally necessary thing for those of us with heart failure - I exercise every day. However, starting the right exercises the right way at the right time and increasing them properly is critical. Please get help from a professional familiar with the ins and outs of heart failure to get your exercise program going and to keep it going. Jon.

Anita C's March 18 reply to Noel's March 17, 2003 - Hi Noel, I underwent evaluation for a heart transplant at Wake Forest University Medical Center in Winston-Salem, North Carolina in the fall of 1999. Following the evaluation, the transplant team told me that I was a good candidate for the waiting list and that it was my choice when I wanted to be listed. As soon as I gave them the go ahead, my name was put on the list. I was very fortunate; six months later I was transplanted and am doing very well.

Ben B's March 18 reply to Tom S' March 18, 2003 - Hi Tom, Could you please direct me to some of those posts regarding CHFers who overdid it and died. I have read of people who died, but I don't recall it had to do with returning to work or walking. Just as there are people who do too much, there are also people who do too little. I thought the consensus was that in general exercise is good for CHF. I do agree it should be checked by a doctor.

Ingrid, March 18, 2003 - Hi to all the readers of this site, My comments are regarding exercise. I suffered a major MI in 1999, which left me with considerable damage, an apical aneurysm, a low EF and heart failure. As I have put on weight recently, I invested in a treadmill to try to get some regular exercise into my life.
     For 3 weeks now I have gone on the treadmill every day, gradually increasing both time and distance (I still can't do hills, though!). Yesterday - wham - 2 minutes and I just couldn't carry on because of pain in my chest, shoulder, and arm. I could have used my spray and carried on, but would this have done me any good? Today is still the same.
     I suppose the point I'm trying to make is that such is the nature of heart failure. In my case it seems to follow no patterns at all. I feel really quite good at one moment and at death's door the next. I will persevere with my treadmill but I will just appreciate that my progress may be erratic.

Myrtle C, March 18, 2003 - Hi, When I bend over to do work in the yard or house I have a problem with SOB. I get so breathless and weak that I have to quit and my brain goes numb, from lack of oxygen I suppose. My cardiologist says I am too short in the torso. That is nothing new, yet I am so limited by this. I can't do anything in the yard because I cannot squat due to knee problems and now I can't stoop down. Does anyone else have this as a problem due to CHF? Thanks for any ideas, Omie.

Al's March 18 reply to Billy's March 10, 2003 - Hi, With an EF of 15% I would recommend a heart transplant. I lived with CHF for nearly 10 years and my EF for the last two years was 8%. Since my heart/kidney transplant on January 2, 2003, I have an EF of 70 and endurance I have not had in many years. I am 67 and my recovery has been nothing less than remarkable. If any of you have questions regarding transplant, I would be happy to try and answer them. God bless all of you who are living with CHF.
Jon's note: It's sure a tough call. I had an EF of 13% when diagnosed, turned down a transplant and 8 years later have an EF of 40%. Your offer is generous and I hope some talk to you

Hal, March 18, 2003 - Hi gang, I'm the annoying guy who is always whining about the financial aspects of "sudden" retirement. Not today, however. The subject and the very real and deadly problem is being overweight. I'm a 54 year young white male standing 6 feet tall. I look and feel great at 180 lbs. The problem is that to stay at 180 I must have a very physically demanding job. I'm too lazy to exercise - I gotta be paid. Anyhow, at diagnosis on January 19, 2001, I was 275 lbs - edema city. Taking 80mg Lasix a day reduced me to 215 in one month. That's 2 lbs a day of fluid reduction. Of course I was feeling pretty good about that situation.The docs reduced my Lasix to 40mg every other day and I remained in the 215 to 220 lb neighborhood for 20 months.
     I should mention here that my diet is fruit, vegetables, grain, and chicken as natural as I can find them with no pizza, fast food or processed food. Shortly after starting my regimen of 3.125mg Coreg twice daily the weight started to creep up, slowly at first and then rather quickly. Between Labor Day weekend and today I have gained 20lbs. Everything being equal: Same diet, same amount of activity, etc.
     I'm worried that this weight is going to kill me sooner than later. My sister is hollering at me to try a straight Atkins diet to shed the lbs. It's hard for me to eat bacon and eggs with an EF of 15%, ya know? I gotta tell ya that of the 6 or 7 doctors I've seen so far not one has had a clue regarding nutrition. Wild, huh? Like diet has nothing to do with health and well being, while in reality it has everything to do with it. Go figure.
     I guess what I'm gassing about is what's the best way for me or any of us fatties to lose 50lbs without dropping dead in the process? I eat properly and either walk or ride my bike every morning except on those days when the drugs keeping me alive make me too dizzy and nauseous to do so. Help.
Jon's note: I've lost 19 lbs of fat on Atkins' so far.

Jill M, March 18, 2003 - Hi, I've been taking ramipril (Altace, an ACE inhibitor) for my CHF and DCM for many years - before this drug was approved in the USA - along with the other standard CHF meds.
     For about a week, since I got my new supply of meds, I've been feeling awful: vomiting, weight loss, palpitations, dizziness, inability to stay awake, etc. Tonight I checked all the containers and found that instead of my 5mg twice a day of Altace I've been taking 2.5mg. Apart from trying to sue the socks off my pharmacist tomorrow, I've been checking the web sites and can't find anything about withdrawal symptoms. Has anyone else experienced this? Is it just long-term use that has precipitated this?
     I took my usual dose tonight and hope to feel better in the morning. Since I live alone, I called a friend to check on me in the mornings to make sure I was still alive since I felt so dreadful. Do I have case against the pharmacist? He appears to be past retirement age, but is the onus on me to check the labels? Any thoughts are welcome. Jill M in the southern hemisphere.

Tom S' March 18 reply to Ben B's March 18, 2003 - Hi, Frankly my mind is mush and I don't remember specific names, but I do remember in particular Tom Masitti, who attempted to return to some normalcy and the shock I felt when his wife said he had died. Tom Masitti died May 26, 1998 following bypass surgery. Tom and I had communicated on a regular basis via e-mail since we had some common interests including flying sailplanes and I was very impressed by him. He told me more about what he was doing via e-mail than appears in his bio. I also remember Al from New Orleans (see his bio) who, until he finally saw the light, carried a full work load. Al died in his sleep July 7, 2000. There was another gentleman from Florida with whom I did not correspond at all but who suddenly died. He had said he was pursuing his career despite a low EF. He did not post here very much and I don't think his bio is in Who's Who
     Add to that group a couple of the ladies who have posted here, and Jon probably can remember them better than I do, and I believe the number of people is in the half dozen range. Again, I usually was very stunned by their deaths because they were all speaking so positively about their recoveries and activities, which in some cases included holding down full-time jobs. One death would be impressive to me, but I am certain there were several.

Cecil, March 19, 2003 - Hi, I am on 200mg amidarone a day and it was affecting my thyroid so my CHF doc decided to treat the thyroid with meds. The levels have gone down only slightly. Now tests show my liver enzymes are high. My CHF doc decided to cut my amidarone dose in half. Has anyone experienced any of these side affects?
          Also, has anyone had to cut the 200mg amiodarone tab in half? I have been on amidarone for 18 months. I don't think I need it but the doctor says he wants to keep me on it for now. All my heart tests come back with normal EF, around 55%.

Jon, March 19, 2003 - Hi everyone, I'll be sending out a mailing on exercise for heart failure patients later today. If you want to receive mailings, sign up at It looks like I'll be adding a new section to my current exercise page in the next few days also. ;-) Jon.

Joseph P's March 19 reply to Cecil's March 19, 2003 - Hi there, I was on amiodarone (Cordarone) for about a year. The doc I have told me it was a short term med for arrhythmias and it would cause damage to your system if kept on it very long. I was put on amiodarone after I had an ICD implanted. After a year the med was stopped and an ablation done. That worked, but something else arose and now I am on Tikosyn for the arrhythmias. God bless, Joseph P.

Tracey C, March 19, 2003 - Hi everyone, I'd like to throw in my 2¢ regarding exercise. Prior to being diagnosed 3 years ago at age 33, I rarely exercised and was 100 pounds overweight. The first week out of the hospital I could barely walk to the mailbox. With the blessing of my doctor, I have worked myself up to 12 mile bike rides and 5 mile hikes. I also regularly walk 2 to 3 miles a few times a week. I have lost 110 pounds and have increased the muscle mass in my legs. Aside from the usual fatigue, I feel better than I did pre-CHF and I attribute that to the regular exercise.
     I have also mentioned before that my 56 year old mom has CHF and has taught yoga and water aerobics for the last 20 years. She has never been on any med aside from an ACE inhibitor. Granted, my EF has never dipped below 40% and my mom's has ranged from 30 to 45% so we're not in the position that some of you are, but with a doctor's blessing I believe that exercise can do so much for you, both mentally and physically. You never would have heard those words from me pre-CHF. Back then it was: Let's order a pizza and hand me the remote. <g> Take care.

Sharon P's March 19 reply to Cecil's March 19, 2003 - Hi, My husband uses a small paint scraper with a razor blade at the end to cut my medications in half. It works much better than anything else we have tried. Blessings, Sharon P.

Paul Davis, March 19, 2003 - Hi, Does anyone here have any experience with taking glutamine supplements, or know of any research involving glutamine with CHF patients? I was wondering if this might help improve muscle building and/or exercise tolerance. Bodybuilders use it when they have been doing anaerobic exercise and it seems like CHFers probably find themselves in an anaerobic state a lot. However, I'm not eager to go mucking about with the delicate balance my body and drugs have achieved just to experiment with some new supplement. So, any ideas?

Pauline, March 19, 2003 - Hello everyone, I just underwent a cardiac cath which revealed complete blockage of a bypass graft to my circumflex artery - which the cardiologist tried unsuccessfully to open - and elevated left ventricular filling pressures. The cardiologist told me normal pressures are 10 to 12 or so, and mine are 28 to 30, which basically means I have heart failure.
     Prior to this I had severe edema of the abdomen and extremities, shortness of breath, chest pain, and dizziness. I was given IV Lasix while in the hospital, lost almost 4 liters of fluid, and now am on 80mg oral Lasix daily.
     My questions are: What exactly are ventricular filling pressures, and what does it mean if they are elevated. How does it affect the heart? Also, is there any site which details which parts of the heart are supplied by certain arteries? My doctor mentioned that the complete occlusion of the bypass graft contributed to the heart failure and I would like to know what parts of the heart are specifically affected by specific arteries. Thanks in advance for any help and thanks Jon, for this web site. Pauline.

Bruce Weir, March 20, 2003 - Hi everyone, I'm confused about water retention. I've not been aware of any sudden swellings anywhere over the last 8 months since being diagnosed with CHF. I'm flabby around the chest and belly, and my ankles have slowly changed so that now they are permanently thick but they don't seem to vary in size.
     Occasionally, about 4 times in the last 8 months, I've taken a small diuretic dose at bedtime because of slight breathing difficulties when lying down in bed, although my breathing on those occasions was okay earlier in the evening when stretched out on the settee.
     My weight is static: I can't lose any and it hovers around 176 lbs; on average rising and falling about 1 lb 3 oz each day. Once it jumped up by 3 lbs but the following morning it fell by 3lbs.
     Is my diuretic working as well as it should? I feel that I'm not losing enough fluid although I consume and lose about the same amount of fluid each day - slightly under 2 litres. Could there be a static reservoir somewhere that isn't being drained off, but daily fluid consumption is? My doctor here in France seems unconcerned.

Sajid, March 20, 2003 - Hi, My father is a heart patient and he has also undergone a surgery, but he is not feeling well now. May I know some treatments he can have in order to get well? Thank you.

Cat, March 20, 2003 - Hi, I just had an exploratory laparotomy with a bilateral salpingo-oorphorectomy. Hormone replacement therapy is out of the question for me and I was wondering if herbal supplements with black cohash and red clover are safe to use for people with DHF. I was extremely SOB and had tachycardia (160 beats per minute) last night and was wondering if the exacerbation could have been caused by the latter herbal supplements. Any input would be appreciated.

Joseph P's March 20 reply to Sajid's March 20, 2003 - Hi there, If you can be a little more specific as to what is wrong with your dad I am sure someone may be able to help you understand how to help him. Joseph P.

Valerie R's March 20 reply to Bruce Weir's March 20, 2003 - Hi, Did your doctor prescribe a diuretic for every day? Are you on a low-sodium diet and if so, how low? I don't know a whole lot about water retention, but I do know that low-sodium has one lose weight. I have lost a great deal! I am also on a daily diuretic but I plan to talk to the doctor on cutting back a little on it. I think I have really gotten the low-sodium diet down pretty well. Valerie.

Joanne R's March 20 reply to Cat's March 20, 2003 - Hi Cat, Please don't make the mistake of thinking that herbal suppliments are harmless because they are "natural." They are often very strong and may work against your best health interests. They can work for you too sometimes, but my point is that our doctors should be involved when we add anything to our complicated medical mix as CHF patients. I figure we pay way too much for medical guidance to ignore it and fly by the seat of our drawers. Be well.

Joe S, March 21, 2003 - Hi, I have told most of you on the board that changing my life style, exercising, eating right, plus fixing my aortic valve healed me. Well, in a way it did, but my biggest problem is that I am lazy and as soon as I was told I was well, I slowed down. Why do I have to cut down on salt? Why do so much exercise? Now I'm almost worse then before. I think we all need instructions in this area. How much should we do? How much should we exercise? It seems to me the ball is dropped by the medical profession. Of course, living 40 miles from town doesn't help either. Anyone's comments would be appreciated. Joe S.

Jon's March 21 reply to Joe S' March 21, 2003 - Hi Joe, That's why I wrote the top of the the CHF FAQ exercise page. ;-) I am in a dilemma myself on the topic. Your doctor knows your sex, age, current and probably past physical condition, how bad your heart failure is, all your other health conditions like diabetes or arthritis or CAD, and so on yet I don't. That's why I don't know how to tell any one person how to exercise. That's also why at the top of the page I mentioned, I say what I say.
     I worked in a lumber mill doing very - and I mean very - hard physical work for many years. I also lifted weights 6 days a week during that time. So my current exercise program reflects that knowledge, muscle memory and discipline; plus I have never had CAD or a heart attack or a stroke. Toss in that I got heart failure at the relatively young age of 36 and you see why my exercises may not be a good idea and why I am unwilling to tell anyone how they should exercise.
     You need to take a very specific list of written questions about exercise to your CHF doc, and make him actually answer them! I have provided my version of such a list on the page mentioned above. :-) Jon.

Tom, March 22, 2003 - Hi, I recently I experienced the pressures associated with over-volume or being waterlogged. One interesting thing I have noticed is that I shed a lot more water if I take the diuretic late evening and it acts while I am relaxing/sleeping. It is notably more than day time use when I am active at work. For what it's worth, it may help some difficult cases. Tom.

Jon, March 22, 2003 - Hi everyone, I just want to pass on a personal experience that reminded me of a medical truth that might help others. I now eat 18 meals a week, meaning that I skip breakfast 3 days a week. I noticed that on no-meal-before-taking-Lasix days my Lasix worked literally 50% better or more. I looked it up and sure enough, I had forgotten that taking Lasix within 2 hours of food - before or after but especially after - seriously reduces its effectiveness.
     I have now switched to Demadex (torsemide) with better success, since food intake has little effect on it. If you make the switch, remember that Demadex is roughly 4 times more powerful than Lasix so your dose will be 1/4 as high. Jon.

Bill, March 22, 2003 - Hi all, It's been several years since my last post. I'm 53, male, and have CAD. I had bypass surgery back in 1996 and have had very few complications until the past 6 months or so, when I was officially diagnosed with early-stage heart failure. My EF is 27% and has been constant since just after the bypass. I am on comparatively simple meds: digoxin (Lanoxin), Coumadin (warfarin), lipitor and just recently Aldactone (spironolactone).
     My question is more about the generalities of this disease than the specifics. I work full-time as a software engineer, a trade that's not noted for 40-hour weeks and low stress, but I've felt increased difficulty in keeping up with younger, abler colleagues, and pretty much for the first time, I'm considering early retirement. It would be nice to give some time and energy to charity or other public-service work while I'm still capable, as well as get back to a good exercise regimen and generally "smelling the roses"
     I have one question: Assuming one is not on disability - I think my uninterrupted and uncomplicated work history would probably disqualify me - how does a CHFer get health insurance? I don't imagine COBRA applies for someone who voluntarily leaves a job and in any event, it's only good for 18 months.
     So how do people who elect to retire early and are basically uninsurable, handle this? I haven't yet called any insurance companies for fear of the sticker shock. Best to all and it would be great to hear comments on this whole elective retirement thing. Bill.

Joseph P's March 22 reply to Bill's March 22, 2003 - Hi Bill, If you look into COBRA insurance, it says that if you have to leave work for medical reasons you can get COBRA insurance for 36 months if you can afford it. If I were you I would sign up for SSD as soon as I could. Who knows? You might be qualified for it and the med insurance that follows a favorable decision. Good luck, Joseph P.

Ben B's March 22 reply to Bill's March 22, 2003 - Hi, I am sorry I have no perfect solution for you. I was on disability for 4 years and got better. When I was thinking about getting kicked off or just leaving I was also most frightened about the loss of insurance. I researched state insurance pools and found it would cost me about $500 a month, after a 6-month waiting period. This was the best I could find.
     Fortunately, I found a great job with the government that it seems I can handle and is giving me benefits. It is all so unbelievable since at diagnosis I had a 10 to 15% EF, enlarged heart, and went into V-tach on the cath table. The EP doctor told me I would be lucky to live a couple of years. Now all my doctors tell me I am well enough to work.
     I would like to add that you probably could get disability, and it might not be such a crime to try, if only for the health benefits. I admire you for wanting to do it on your own. This is one rerason among many why I think the disability system in this country is sort of messed up. They make it so difficult if you don't want to do it the conventional way. This forces people who are willing to pay their way on everything but health insurance to go for the whole enchilada instead.

Jacky, March 22, 2003 - Hi, The doc put me on Lasix last week (thanks for the info Jon, I was taking it with food). I have no obvious edema but they seemed to be concerned about a breathing problem. I feel as if I need to catch my breath frequently and very often cannot take a deep breath, no problem with shallow breathing. This is not all the time. Does this count as SOB or are they being overly concerned? Their concern makes me worry about the breathing. Is it possible for catching your breath to become an unnecessary habit with no real physical reason? All this has made me become very aware of my breathing. The Lasix doesn't seemed to have made any difference. Jacky.

Anita S, March 22, 2003 - Hi, I don't usually post but I always read the posts every day and keep my husband up on what is going on with all of you on both sides of the forum. My husband Phil is having episodes of dizziness and passing out. His cardiologist wants him to have an EP study done to see if he needs a pacemaker. Would some of you who have had this done, or your spouse has had this, please let us know how he will feel during this test and what might happen to him? We appreciate any information that you can give us. Take care.

Tom S, March 22, 2003 - Hi, What are the typical enlargements of the heart in centimeters, and associated EF's. This also begs the question of whether or not worn out, stretched out hearts - as in acute or end stage class 4 heart failure or persons with EFs of 15% - can shrink back to normal size and be as functional as they were before CHF? In other words, can a stretched out heart muscle return to near-normal size and be as strong as it was prior to the onset of CHF? If so, how many recorded cases are there and where do I go to get the herbs, meds, voodoo, or witch doctor that will do that to my heart?

Joe S' March 22 reply to Jon's March 21, 2003 - Hi Jon, I copied everything regarding exercise and read it but my cardiologist wouldn't even tell my how well my scar was doing. All my doctors are in Nevada and they're almost scared to diagnose because of law suits. Oh well, my chiropractor answers some questions and I am doing much better. Thanks again for all your help over the years. Joe S.

Jon, March 24, 2003 - Hi everyone, I have quite a bit ready to send out on the mailing list, so if you want to receive it, just sign up at I still don't have my page about the experience with the Atkins' eating plan done but I feel kind of obligated to say that I have - very slowly - lost 22-1/2 lbs on it since autumn of 2002. I never went even close to ketosis (we use the lab test strips) but the diet has stabilized my blood sugar and so reduced my appetite that I have been able to seriously reduce the amount of food I eat without hunger or any of the old problems: mental fuzziness, extreme fatigue, emotional irritability, etc.
     To those who think not eating so much is a matter of sheer willpower or discipline, I now say, "Phooey!" I ate too much because my body was always hungry. Now, it's not always hungry and it's easy to stop after eating a proper, small portion! If you do it, though, be sure to do it exactly right and to stick with it over a long period of time without cheating! Jon.

Margaret D's March 24 reply to Ben B's March 22, 2003 - Hi, Several people referred to the medical benefits with being on disability. I was diagnosed with IDCM in June of 2002,and was approved for SSD the end of August. I know - it's incredible! I understand that I will go on Medicare after 2 years of SSD, but what are the other benefits? Am I missing something? I would really like to know since my present health insurance has a permanent rider on anything cardiac-related.

Valerie R, March 24, 2003 - Hi everyone, I had a very frightening experience this last Thursday night. I've been feeling very well, doing a good low-sodium diet and weighing 91.5 lbs every morning, but I awoke after 2 hours sleep Thursday night unable to get my breath.
     My husband called 911 and I had my first ride in an ambulance. I had a BNP of 1,700 and I believe under 100 is normal. It was called pulmonary edema but I really cleared up fast. The x-ray, according to a pulmonary specialist, showed mild CHF. I stayed in the hospital until Sunday, at 11: AM but I was fine by Friday morning.
     My cardiologist doesn't know if it is natural progression of disease or something else, like the new meds I was put on when I was in Club Med Thanksgiving. I was scared - I am scared. Eight years ago I went in at New Year's. I went in this last Thanksgiving. Friday was my birthday. Can we all skip Easter? Valerie R.
Jon's note: Flash pulmonary edema hits some CHFers regardless of how well they are doing in general. I think Karen K suffers from this too

Vickie's March 24 reply to Anita's March 22, 2003 - Hi Anita, I had an EP study done last September. I was completely asleep from intravenous sedation from the very beginning of the procedure until several hours after it was completed. Apparently I woke up a couple of times in the recovery room but have no recollection of anything from about 9:00 that morning until about 4:00 that afternoon. The test itself and the implantation of the pacer/ICD took about 2-1/2 hours. I was shocked 3 times and didn't feel a thing. It was a breeze. Good luck to you and your Phil.

Joseph P's March 24 reply to Anita's March 22, 2003 - Hi, For me the EP study was a walk in the park. The hospital and the doctor I had made it painless. I had the passing outs and dizzies, and the EP study determined that I needed an ICD instead of the pacemaker that I had - that was a piece of cake also. I feel great and have piece of mind that I have my paramedic with me at all times. God bless and good luck, Joseph P.

Larry's March 24 reply to Jon's March 22, 2003 - Hi, I have been taking Lasix for almost 3 years and I have never seen anything that refers to food before or after taking it. Could you give me a reference? Thanks for all your help, Larry.
Jon's note: Threlkeld DS, ed. Diuretics and Cardiovasculars, Loop Diuretics. In Facts and Comparisons Drug Information. St. Louis, MO: Facts and Comparisons, Apr 1994, 137d-8 for starters. I did not keep the references although it is in The Manual. Try taking it 2 hours before eating on an empty stomach and you'll see the difference. <g> My heart failure specialist agrees.

Valerie R's March 25 reply to Jon's March 24, 2003 - Hi Jon, Thank you for your note. No one mentioned "flash pulmonary edema." Somehow having a name for it helps. My PCP's reaction is that I must immediately get a heart transplant. Fortunately, my cardiologist is not so quick to jump into things. I wrote an e-mail to Karen K, asking if she was the one. She said she was surprised you remembered and that it happened to her 2 years ago. I feel better knowing that it might not be chronic. I have been going to bed later and later, putting it off, so to speak. Thanks again. I wish someone else who has had this would let me know. Is it rare?
Jon's note: I'm surprised I remembered too. <g> I would say it is unusual rather than rare.

Joyce, March 25, 2003 - Hi, Does anyone out there have something akin to hot flashes? I have them every night and sometimes during the day. I sweat like a running faucet. They are not related to menopause because I am too old for that. I finished that years ago. Sometimes they come 9 to 11 times a night. Thank you so much Jon, for this board.

Don Grande's March 25 reply to Jon's March 22, 2003 - Hi, I have been on furosemide since December of 1999. The label on my prescription says "take with food or milk.quot; I have tried taking it 2 hours before eating in the morning, and it is much more effective. It gets kind of discouraging, what with the misinformation, eh?
Jon's note: It should read: If stomach upset occurs, take with food or drink.

Ruthie A's March 25 reply to Valerie R's March 24, 2003 - Hi Valerie, I have had a couple of bouts with flash pulmonary edema since I was diagnosed in December, 1997. The first time it happened, my then-teenaged son thought I was dying right there in front of him. Wordlessly he climbed into bed with me and stayed there until he was reassured that I was going to be okay. We were able to catch it early as we did the second time too, but looking back on the experiences I probably should have gone to ER.
     My CHF doc gave me protocols to follow if I started to suddenly have trouble breathing. We carefully followed his instructions during the second episode and it worked. Ask your CHF doc what he wants you to do if this should happen again. Probably he will say to get to ER as fast as you can. Please don't stay home just because I did and lived to tell about it - I probably was dumb for not going to the ER. Thankfully it has been over 3 years now since that last episode and I pray it never happens again. Ruthie A.

Valerie R's March 25 reply to Ruthie A's March 25, 2003 - Hi Ruthie, Thanks for your post. I feel a little better knowing that flash pulmonary edema is not necessarily a chronic thing. I did ask my doctor about what to do and he said to get myself to an ER. Honestly, I was in a bad way, with BNP at 1,700 according to a pulmonary specialist. I had a vague flashback today (I don't remember much about the ambulance or even getting into the ER) that I was given a shot of morphine by paramedics, but I don't know if this is true. It feels like I lost about an hour. Valerie R.

Mel's March 25 reply to Joyce's March 25, 2003 - Hi Joyce, Your post reminded me that the subject of sweats has come up before. Sure enough, check Kathy's post at and my reply at among others. I don't know if anyone has determined why they are caused, but there's no doubt they happen with a few of us. I'm sure they'll disappear soon for you. Best of luck.

Mel G's March 25 reply to Valerie R's March 25, 2003 - Hi Valerie, I hope you're feeling well. I found this description of flash pulmonary edema: "... flash pulmonary edema, a life-threatening condition that occurs when fluid suddenly shifts from the pulmonary vasculature into the lung interstitium and alveoli. Pulmonary edema can be caused by pneumonia, MI, trauma, or inhalation of toxic chemicals. Most cases are caused by heart failure. Because flash pulmonary edema can lead to cardiopulmonary arrest, the priorities are to ensure adequate oxygenation of tissues and decrease myocardial workload."
     That seems to say what it is, but I haven't found anything to say why it is. I'm not sure if that will help you or not. It might be something to begin discussions with your doctor. Good luck.

Betty's March 25 reply to Joyce's March 25, 2003 - Hi Joyce, I am also having the hot flashes. I am also too old to be having them from menopause. I was hoping someone would have the answers for us. I have them especially at night. Could be my meds? I thought it was a pain pill I was taking so my doctor took me off it and for awhile I was fine but the hot flashes started back up again. I am losing a lot of sleep with this. Thanks, Betty.

Jon, March 26, 2003 - Hi everyone, The next mailing will be summaries of pretty much all trials of CHF pacemaker therapy. If you want to receive it, be sure you are signed on the mailing list at On a more personal note, if anyone has participated in the Social Security "Ticket to Work" program, please drop me a line. It looks like I may soon be looking for work; my little web site/corporation doesn't seem able to get any grants - big surprise. <g> Jon.

David Wilson, March 26, 2003 - Hi, I am thinking about having weight reduction surgery. I wondered if any other readers have any experience with weight reduction surgery. I weigh 316 lbs at 6 feet tall. I take the standard meds and it seems like Coreg has given me type 2 diabetes. It is very hard to lose weight even on a diabetic diet. I control my diabetes with diet and exercise. I walk a mile a day but it is difficult. I know I would feel better if I lost weight but watching my diet does not work. I eat a high-fiber diet per my dietician's directions. I have lost 50 pounds since I was diagnosed in August of 2000 but now I am slowly gaining. Any advice or input would be welcome.

Valerie R's March 26 reply to Al's March 19, 2003 - Hi Al, I am interested in your heart transplant and also why you told Billy he needs one. I have a PCP who is pushing me for one but my cardiologist so far, is not. I have had CHF and IDCM with an EF of 15% since 1995. I have been very well compensated and have been teaching English to 8th graders 5 hours a day - no stress - all along.
     This last Thanksgiving a cold seemed to give me SOB and I could not lie down at night. I went to the hospital and had an overhaul: ICD, new meds (Coreg, cozaar), and a stricter low-sodium diet. I did well for 2 months, then had problems again until the pacemaker part of my Medtronic unit was turned down. Then 3 weeks later I had flash pulmonary edema and had to call 911.
     Now I feel great again and I am back on my old meds - Accupril, digitek, furosemide. My PCP's point is that I could die (life expectancy 5 years). I will need to look into statistics but my point is that's a hard decision to make when I usually feel like I'm not sick at all. What do you think? I'm 60. Valerie.

Betty, March 26, 2003 - Hi Jon, I did not know that there was a difference between a cardio doc and a cardiomyopathy specalist. My doctor is a cardiologist and I have DCM with an EF of 20%. Is it possible I am seeing the wrong specalist? I see my doctor every 6 months. He seems very interested in me and I can ask him anything I want and he always answers but one question he never gives me a answer to is, that I seem to hold water in my stomach and he disagrees. Thank you, Betty.

Jon's March 26 reply to Betty's March 26, 2003 - Hi Betty, All CHF specialists are also general cardiologists but not all general cardiologists are heart failure specialists. If at least half your cardiologist's patients are heart failure patients, you're fine - but - he should well know that edema is often seen first or most in the stomach. See the edema page. Jon.

Karen K, March 27, 2003 - Hello, I just thought I would add my 2¢ regarding when one takes Lasix. I had not been told to not take it with food or to take it 2 hours before or after a meal. However, I've taken it 2 hours after breakfast the past few mornings. Jon, as far as I can tell, it certainly does make a difference. I'm not noticing any changes in my weight but I am noticing I am using the bathroom more throughout the day than I was when taking Lasix with a meal. Interesting, hmmmmm.
     I am fortunate in that I don't generally retain fluids and I am if anything, underweight. I don't keep track of how much I drink but other than a glass of juice with breakfast and milk with dinner, the only other fluids I actually drink are a number of cups of coffee. In and of itself, coffee is supposedly a diuretic. I could be getting a double dose without realizing it. I also take spironalactone but only 12.5mg every other day since my potassium is just above the limit for high.
     Interestingly, I read my medical records about a month ago and the doctor's notes indicated that "patient still wants to take spironalactone" when in fact this doctor is the one who told me, "it's not worth much as a diuretic but works for people with CHF in other ways" and suggested I remain on it. This will be discussed at my next appointment. Why he wrote that is peculiar to me. Karen.

Anita C's March 27 reply to Valerie R's March 26, 2003 - Hi Valerie, Your case sounds very much like my own. I was diagnosed with cardiomyopathy and CHF in 1991. My EF then was 22%. I functioned pretty well for 6 years, continued a full-time job, and wouldn't listen when told by my cardiologist that I would be a good candidate for a heart transplant.
     I was put on Coreg but this drug, which is so wonderful for a lot of folks, did not help me. My EF fell to 15%. However, I was still feeling pretty good I thought, although my defibrillator fired 3 times and I landed in the hospital with excessive fluid on 3 occasions. I was put on the heart transplant list during the fall of 1999. I was transplanted in April of 2000 and am doing very well 3 years later. My energy level is great.
     What I'm getting at is that this is a very personal decision. I eventually decided to go for the transplant because I didn't want to end up too sick to survive the surgery if I waited too long. My cardiologist told me that I had a window of opportunity and maybe I shouldn't pass it up. I'm grateful I didn't. I understand fully what you are going through. It is a gut-wrenching decision.

Jon's March 27 reply to Anita C's March 27, 2003 - Hi Anita, I agree with you and Valerie that this is a very individualized decision. I don't believe that in general, doctors are correct in pushing heart failure patients toward transplant as early and as hard as they so often do. I started with an EF of 13% and have also had a very low Vo2max at times but turned down heart transplant and now have an EF of 40% and a reasonable Vo2max. For most people, it is a very difficult decision indeed.
     Some - please note I say some - heart recipients become very gung-ho about the procedure because it worked well for them and that does not always sit well because we cannot hear from those for whom it did not go nearly so well. Like you, I think anyone faced with the decision who can, needs to really educate themselves about it and them make their own decision. That's the only reason I wrote such an extensive section on heart transplant for this site.
     I confess that I have no trust in the willingness of doctors to really listen anymore. Concerns that I voiced as far back as 1997 went unheeded and yet are now being accepted as solid truths because finally doctors noticed them - not because they listened to patients telling them the same things years ago. Thus I caution people constantly about this early strong urging toward transplant doctors are prone to do.
     I am sorry - this turned into a vent and in no way reflects on your post to Valerie! I need to vent as much as anyone. ;-) Jon.

Barbara J, March 27, 2003 - Hi, I had chemotherapy in 1994 which caused my cardiomyopathy. I am now having a pain in my right side which they say is caused by an enlarged liver. I was told they can't do anything about it other then painkillers. I would appreciate any feedback from others who may have had this problem.

Jon's March 27 reply to Barbara J's March 27, 2003 - Hi Barbara, The usual cause of an enlarged liver in a heart failure patient is retained fluid, called volume overload. If that is indeed the cause, you need to get a new heart failure specialist because proper treatment for your CHF would eliminate the problem. If that is not the problem, you need a second opinion because the cause needs to be addressed, not just the symptoms! Jon.

Emil's March 27 reply to Jon's March 26, 2003 - Hi, I truly don't have any extra income to help with your site. I sure wish I did. Is there anything else I could do to help? Perhaps, locating sponsors or something?
     On another note, I'm really tired of living with CHF. Every day I'm sick is another day I lost from my life. I catch myself doing all the things I'm not supposed to every day. I think sometimes I'm trying to make myself sicker so I can get closer to a transplant. I've convinced myself how much better I'll feel after my transplant, that I want it now. I'm 32 years old and living with CHF is killing me.
     I'm probably just venting. However, I think I'm at the point where my quality of life is becoming lost. Is there a point where doctors understand this and follow through with a transplant, or am I forced to live with their decision about my life?

Jon's March 27 reply to Emil's March 27, 2003 - Hi Emil, Please everyone, hang onto your money. Although donations are always helpful, this is looking at a loss of all disability income plus my Union pension and 2 of my 3 health insurances. To cover all that would require a grant for running the site that would pay me an actual salary. I have not been able to effectively present my site as important enough to merit a grant to date; healthcare concerns tend to talk nice about the site but in reality, they usually consider patient-run sites as fluff. I am a 501(3)(c) corporation, though, so I am in the category that is eligible for such grants. Hey, if anyone can get a sponsor interested, that'd be great - have them contact me.
     I can sympathize with the way you feel, Emil. I was 36 and very fit when I got heart failure and the adjustment was not easy. How long have you had CHF? Jon.

Betty's March 27 reply to Jon's March 26, 2003 - Thank you Jon for the info on CHF specialists. I intend to talk to my chiro doctor about the bloating in my stomach and will demand some answers. I feel I am the patient and I deserve the best treatment. I watch my weight every morning so feel I am safe. Again, thank you. Betty.
Jon's note: chiro doctor? about edema?

Jill M's March 27 reply to Valerie R's March 26, 2003 - Hi Valerie, I'm sorry you've been having such a hard time. I see that you don't mention Coreg as one of your meds. I know that a lot of people have problems with it, but I wonder if you've ever tried it? I am one of the lucky ones who tolerates it well. My cardiologist attributes my good health since 1997 to it. So far I haven't suffered any setbacks. I am 64 and my mother has just turned 90. Obviously I didn't inherit her heart genes; her geriatrician says her heart is good enough for her to be a donor! Jill M.

Clara D, March 27, 2003 - Hi everyone, I just learned that a low sodium cheese I use is being discontinued. This cheddar has only 8 mg sodium per oz, much lower than any other I've found, and tastes halfway decent. Perhaps some of you use it also. It's distributed by the Heluva Good Cheese Company and they told me when I placed my last order that they have only a few cases left.
     Their supplier thinks there is not enough demand for the product and has decided to discontinue it. Perhaps if they hear from enough people who want it, they will reverse their decision. Their customer service number is 1-888-611-4341 if anyone would like to call. They said they are surprised at the number of people who are upset by this news and are passing the information along to their supplier. Thanks for your help. Clara.

Mide, March 27, 2003 - Hi Everyone, I would just like to say that this site is wonderful. It gives me a lot of courage to face life as a 22 year old with CHF. Anita C's post on March 26th is especially inspiring because I was told heart transplant is the only way to go and knowing someone else has gone through all that and is still keeping strong is really amazing. I am doing pretty well now, studying and working full-time with very few bad days.
     My cardiologist wants me to have an EPS so as to know if I need a defibrillator. Could anyone tell me very detailed info about what that's all about? Also, I lost so much weight when I was diagnosed last year and I can't seem to regain any more. I mean I am really skinny. Does anyone really know diet that would make me regain some more weight and still be low-sodium? Thanks.

Natalie K's March 28 reply to Betty's March 25, 2003 - Uh-oh! Count me in with the way-post-menopausal hot flashes! Is this a trend? I am also contacting Heluva cheese with disappointment.

Chris' March 28 reply to Bruce Weir's March 20, 2003 - Hi Bruce, Although I have been on diuretics for some years because of CAD, I have only recently been diagnosed formally with heart failure. I find the diuretic seems to cope with the daily fluid problem, but like you, I feel there is a large amount of "trapped" fluid in my body mainly in my abdomen and thighs, although it does travel down to my ankles some days. It seems to move around according to the position I sleep in. I am going to ask about this when I next see my doc and hope to get some answers! If you get any first, please let me know. Bye, Chris.

Valerie R's March 28 reply to Jill M's March 27, 2003 - Hi Jill, When a cold took me to Club Med for the first time in 7 years, one of the changes made was to take me off Accupril due to a cough and put me on Coreg and Cozaar, as well as implanting an ICD/pacemaker. After 2 months I was in awful shape; I was short of breath and could not lie down. The doctor had my pacemaker turned down so my heart beats on its own. That was an instant success.
     Then 3 weeks later my husband called 911 due to flash pulmonary edema that was very bad. At that time, the doctor decided to go back to my old meds to see what happened. We both think too many changes were made too abruptly. I'm hoping that if I do well, and it will take several months I think, perhaps we can gradually add Coreg as well as up the Accupril dose. Valerie.

Valerie R's March 28 reply to Mide's March 27, 2003 - Hi Mide, I'm the Valerie whom Anita wrote to, and she made me feel better too. I also have lost too much weight, although my PCP says 90 lbs is only about 15 lbs of loss and no big deal. I told her it was a big deal if one cannot wear an entire closet worth of slacks and pant suits because the pants fall off! I am on a serious search to find a way to gain weight. I will keep you posted. Valerie.

Joe S' March 28 reply to Chris' March 28, 2003 - Hi Chris, I supposedly have been all fixed with my aortic valve replaced, but I still retain fluids in my ankles a lot. The docs say it's because I sleep on the couch too much. Years ago they called it gout. It was 60 years of suffering before the docs analyzed me correctly with CHF and a bad valve. Joe S.

Joseph P's March 28 reply to David Wilson's March 26, 2003 - Hi, I also take Coreg. Just how did Coreg give you type 2 diabeties? Thanks, Joe.
Jon's note: Coreg raises blood sugar - see the Coreg page

Tom, March 28, 2003 - Hi, I read Jon's encouraging folks to seek out a CHF specialist. I'd seen many doctors and was finally okay with my general cardiologist. After a difficult month in February, I sought out a heart failure specialist at Hartford Hospital.
     After my first appointment today with Dr. Brett H. Duncan, I can only say how thrilled I was! He spend 75 minutes addressing my every question and I was shocked at his level of knowledge on everything, including studies of Hawthorn Berry Extract presently underway in Europe. After this experience I can only underscore the advantage of a CHF specialist. Again Jon, thank you for the help you continue to provide. Tom.

Sheryl C's March 28 reply to Betty's March 25, 2003 - Hi, Night sweats are also one of the symptoms of diabetes and since that seems to go hand-in-hand with CHF, be sure and have your doctor do an A1C test. Check and see if you have any of the other symptoms. Sheryl.

Mide, March 29, 2003 - Hi and thanks Valerie, for your reply. Do keep me posted, okay? Does anyone know if it's true that women with CHF find it almost impossible to give birth because of the meds they take and the extra pressure and effort being pregnant requires? I really would love to know if this is a documented fact. Thanks.

Jon's March 29 reply to Mide's March 29, 2003 - Hi Mide, Pregnancy is very dangerous for both mother and child if the mother has heart failure. ACE inhibitors must be stopped, hopefully before they damage the unborn child, thus increasing the mother's heart stress right from the start. Then, of course, the mother's heart must do a tremendous amount of work to keep up with two lives living in one body. Kidneys and lungs are also overstressed 24 hours a day for many months. It's just not a very good idea, certainly not while the potential mother's heart function is reduced. Jon.

Jim T, March 29, 2003 - Hi, I don't post much because I don't feel good at all but I read them all each day. I have been in class 4 CHF for about one and a half years now. They are now talking hospice and I don't know anything about this. I am a very hardheaded person, who dosn't like to be told anything.
     Does anybody have any pros or cons on this? I sure would like to know more before agreeing. Praise God for a good life! Jim T.

Bev T, March 29, 2003 - Hi, I have found that wearing an estrogen patch keeps me from having the sweats. I've been on it since menopause because I have a history of osteoporosis. Every time I try to go off it, I get the sweats again. Climara is my drug of choice. The patches are small and stick to the skin better. Okay, okay, I know about hormone replacement therapy and heart disease, but something will eventually get me! ;-)

Susan, March 29, 2003 - Hi, I was diagnosed with IDCM last April and was started on the usual meds. My EF was 20%. Last December I started feeling great and I had a MUGA which revealed an EF of 61%! I actually thought I was cured. My cardiologist and I decided not to change any meds and he scheduled an echo for this May. Well, beginning in February, I started really feeling bad again, even though I have not changed anything. Has anyone ever heard of this? I know my future echo won't show an EF that good in May.

Mel G's March 31 reply to Natalie K's March 28, 2003 - Hi, I just to clarify what I wrote about the sweats earlier. I am years away from being menopausal and my PCP checked my hormone levels, which are perfectly normal for a "cycling" female. So I guess that's not the answer. I think it's in the cardiac meds. We did have a comment earlier from one of the men with the same problem. I guess we'll have to keep looking for a cause.

Mel G's March 31 reply to Susan's March 29, 2003 - Hi Susan, I wanted to write to give you a little encouragement. I have felt just the way you describe. I've been surprisingly well and then had a whole string of very weak days. Without changing any meds and with no evidence of problem edema, I've been sure that my next echo or MUGA was going to show a significant decline. Then a day would come out of nowhere and amaze me with how well I could feel again. My MUGA result went from an EF of 21% to between 52 and 48 in 4 tests over the last 1-1/2 years. It gave me a pleasant shock each time!
     Every time I went in for a new test I mentally prepared myself for the "bad news" even to the extent of planning how I would talk to my husband and kids about my failing health. I am finally confident now that my results will be generally stable. I've been reassured that a few percentage points either way is not really a worry, but a consistent trend downwards would possibly indicate some changes. I have a great relationship with my cardiologist, who has kept a very close eye on me and has just told me I can wait 7 months to see him again! That was like a ticket to freedom. :-)
     I hope you'll find that your results aren't anywhere near as bad as you predict they'll be, and that you'll discover many, many good days to come. Even what seems like an endless string of bad days doesn't necessarily indicate that your heart failure is worsening. They're just days that aren't as good as the good ones! We all have them. Sometimes you can pin down a reason (too much salt, you pushed too hard one day, etc.) while sometimes there doesn't seem to be a reason.
     One thing I do know: There are CHF patients out there that feel just like you do. It's okay. In fact, it's probably lots better than you think it is. ;-)

Lori K, March 31, 2003 - Hi everyone, I have had a really bad week after contracting a flu-like illness without the fever. Does anyone know if there is a connection between CHF and the following symptoms: Intense muscle cramping, joint pain, and weakness in the muscles? I started with coughing and intestinal problems and got better for a few days, then the muscle spasms really kicked in. My electrolytes are good. My PCP thinks it is all viral. Has anyone had this happen?
     Also, as a reply to those wanting weight gain info, your doc can refer you to a dietician at the local hospital for a plan. I bought some Boost for weight gain and high-calorie protein bars for between meals. I never thought it would be hard to gain weight! I know if I could eat pizza, it would be no problem! Also I have lost muscle so if that is an issue some free weights can help, but get a plan from your doc on that. Best of luck! Thanks ahead for any help! Lori K.

Valerie R's March 31 reply to Lori K's March 31, 2003 - Hi, I think Boost is a great idea but be very careful if you are on Coumadin (warfarin). Coumadin thins the blood; vitamin K is an antidote for that and really messes up PT/INR. Boost has, depending on which you get, a lot of vitamin K.
     I have also lost muscle and my doctor told me to slowly get back on the treadmill. I am slowly doing that and I do mean slowly, no matter how good I feel. I did a whole 11 minutes today, or 0.51 miles. Valerie.

Kary Warren, March 31, 2003 - Hi, Does anyone know of a good cardiologist specializing in CHF in the state of Oklahoma?

Karen K's March 31 reply to Lori K's March 31, 2003 - Hi, Just a quick comment regarding the Boost (or Ensure, Instant Breakfast) or any other power bars. We need to closely watch how much and magnesium are in these types of supplements. High levels of each of these can cause problems with heart rate and possible fluctuation in rhthym. Karen.

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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