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

Joseph P's 1-16 reply to Richard M's 1-15     it was an EPS that I had
Paul M 1-16     Reglan-related problems - warning
Cindy H 1-16     seek info on right-sided heart failure
Shirley's 1-16 reply to Donna's 1-15     thanks, hoping for the best
Shirley's 1-16 reply to Steve's 1-15     thanks, hoping for the best
Paul C 1-16     just diagnosed - what's going on?!
Tom 1-16     home Coumadin blood test machine
Gino's 1-16 reply to John W's 1-14     valsartan in patients already taking CHF drugs
Jon 1-16     CHF chat now hosted once a week
Bill C 1-16     prayer request for my 6 month old daughter
Debbie's 1-17 reply to Bill C's 1-16     prayers for your daughter & more
Vee's 1-17 reply to Autumn's 1-11     hydralazine experience & more
Ruthie A 1-17     sores under tongue from nitro - help!
Ginger 1-17     questions about "functional chest pain" & more
Nancy S' 1-17 reply to Cindy H's 1-16     low BP, no blockages experience
Jon 1-18     page updates, anyone want in this survey? & more
Davida S' 1-18 reply to Bill C's 1-16     keep your faith
Pat M's 1-18 reply to Autumn's 1-11     hydralazine and isosorbide experience
Shirley's 1-18 reply to Bill C's 1-16     we'll pray for you
Loretta D 1-19     has anyone with CHF had weight loss surgury?
Joseph P's 1-19 reply to Cindy H's 1-16     what is right-sided heart failure?
Jack D's 1-21 reply to Joseph P's 1-19     right-sided heart failure Urls
Jamie 1-21     seek info on Acorn heart wrap
Joseph P's 1-21 reply to Ginger's 1-17     my experience
John's 1-21 reply to Loretta D's 1-19     daughter's weight-loss surgery experience
John's 1-21 reply to Ruthie A's 1-17     nitro use experience
Joe 1-21     seek info on drug called Natrecor
Norma 1-21     does anyone take hawthorne? & more
Autumn's 1-21 reply to Vee's 1-17     meds, neuropathy & more
Doris R 1-21     finally got my SSD!
Sharon 1-21     fainting - when to go to the doc?
Jon 1-24     I'm back
Karen F 1-24     heart month
Davida S' 1-24 reply to Sharon S' 1-21     lightheadedness & more
Michael S' 1-24 reply to Sharon S' 1-21     lightheadedness, exercise risk? & more
Jon's 1-24 reply to Michael S' 1-24     exercise risk & more
Cindy 1-25     EKG changes worry me
Jon's 1-25 reply to Cindy's 1-25     EKG changes
Michael S 1-25     corrections to my last post
Joe S' 1-25 reply to Michael S' 1-24     exercise, life style & more
Paul B 1-26     are these meds at the right dose? & more
Joe S 1-26     certain physical exertion hard on me, ideas?
Jon's 1-26 reply to Joe S' 1-26     possibilities
Shirley 1-26     to Maxine about pacemaker info
Stephanie's 1-26 reply to Joe S' 1-26     possibilities
Jon 1-26     page updates
Mary 1-28     problems using hands & sitting - questions
Amelia 1-28     update, broke my foot
Ralph's 1-28 reply to Sharon's 1-21     Coreg problems
Jon's 1-28 reply to Ralph's 1-28     some points to ponder
Nikos K 1-28     some CHF questions & about this site
Jon's 1-28 reply to Nikos K's 1-28     about this site's sponsorship/status
Mary Lou's 1-29 reply to Autumn's 1-21     peripheral neuropathy experience
Sabrina 1-29     does anyone have trouble sleeping?
Dawn 1-29     seek solutions to arthritis pain
Ralph H's 1-29 reply to Jon's 1-28     PCPs, paying for drugs, pooters & more
Jon's 1-29 reply to Ralph H's 1-29     PCPs, drug costs, dealing with HMOs
Joe S' 1-29 reply to Jon's 1-28     seek valve replacement experience
Frank Smith's 1-29 reply to Mary Lou's 1-29     peripheral neuropathy pain
Walter K's 1-29 reply to Mary Lou's 1-29     peripheral neuropathy - neurontin questions
Norma's 1-29 reply to Ralph H's 1-29     hawthorne and heart failure
Henry 1-30     seek info on VA application, policy
Ruthie A's 1-30 reply to Walter K's 1-29     good neurontin experience
Jon's 1-30 reply to Walter K's 1-29     offbeat neurontin experience
Ralph H's 1-20 reply to Jon's 1-29     does anyone get off meds? & more
Jon's 1-30 reply to Ralph H's 1-30     going off meds, doctors misdiagnosing CHFers

Joseph P's January 16 reply to Richard M's January 15, 2002 - Hi Richard, It's me again. The test that was run on me was called an EP study, which is an electrophysiology test that determined if I needed an ICD. What they did was a cath on my left side in a vein and run leads to my heart and do a series of shocks to see how my heart reacted. Well, it did everything the doctor said it would do, which was life-threatening to me so he implanted an ICD but I still have a-fib, which I'm sure he will correct. God bless, Joseph P.

Paul M, January 16, 2002 - Hello Fellow CHFers, I have a true story to tell you about a drug called Reglan. Some of you that have diabetes might be taking this for gastroperesis (partial paralysis of the stomach). For several year I was taking Propulsid. I had no problems tolerating it despite all the cautions before the FDA had it taken off the market. My PCP then put me on Reglan and I went through one awful year. I had extreme difficulty sleeping, was sexually impotent, and had no sex drive. I was a completely different person and had bouts of depression. Sounds familiar, does it? My heart was checked by echocardiogram again but found no problems. I even had my gallbladder removed but it didn't solve the problem.
     My PCP finally sent me off to a specialist for the sexual problem. He was willing to blame my diabetes for it but just in case, he ran some blood tests. My prolactin (luteotropin) level was about 130 (normal high is 18) and my progesterone was in the toilet. I was then scheduled for an MRI looking for a growth on the pituitary gland that might be causing my problems.
     While waiting, my wife surfed the Internet for prolactinoma and discovered 3 drugs that can cause the same symptoms without the growth. One of then was Reglan! We started comparing notes and discovered that my symptoms began just 2 months after I was switched to Reglan. My symptoms started out mild at first. I took myself off Reglan and in 1 1/2 weeks - when I saw my endocrinologist about this problem - my prolactin level had dropped to almost normal. I'm normal again and sleeping like a baby.
     Just about every drug that you take has side effects. With some people these side effects are not present and in others it can knock them for a loop. Reglan had sexual impotence listed as a side effect but what about my other symptoms like depression and lack of sleep? They were not listed.
     Several years ago I had PCP who was not good at all. He thought he knew everything and could treat everyone. In the end, he really misdiagnosed me as having gastroperesis, which started this whole train of Propulsid and Reglan. If he had sent me to a gastrointestinal specialist, I might have been properly diagnosed as having rings in my esophagus - that were removed during an outpatient procedure.
     My advice to those patients who are taking Reglan and having sexual dysfunction, sleeping problems, or bouts of depression, is to talk to your PCP about running a hormone panel on you. Doctors are so eager to blame such problems on just being part of "normal" CHF. Once you've had CHF, doctors are sometimes eager to put the blame of current problems onto your heart. So off I go for another echocardiogram just to find out I'm still normal. Well, I guess it's too late to say I'll keep this short. <g>

Cindy H, January 16, 2002 - Hi, I am looking for a good resource on right-sided CHF. I am 44 and was just diagnosed. The catch is that I don't have high BP, high cholesterol, or any other predisposing conditions. I want to read more about my diagnosis. I hope you can shed some light. Thanks.

Shirley's January 16 reply to Donna's January 15, 2002 - Hi, It looks as though I won't have any new information before your husband has his procedure since he goes in the 28th and I go in the 31st. God bless you both. If you have time after the procedure, let me know how things are going and I'll do the same.

Shirley's January 16 reply to Steve's January 15, 2002 - Hi Steve, Thanks so much for taking the time to answer my note. Your letter is very encouraging. I have some testing to do on the 31st and will be randomized on the 1st. Do you also have the defibrillator? My EF went from 25 to 12% in the past year so I could definitely use some help. I'll write after my randomization. God bless.

Paul C, January 16, 2002 - Hi, I am 39 years old. On December 28, my eyesight went askew (vertigo?) so I went to the emergency room. While doing an EKG, which I've never had one of before, they discovered a left bundle branch block. I went to a cardiologist, who did a DIMPS test. They concluded that I might have some arterial blockage and set me up for a heart cath and possible angioplasty last Friday. During the cath they ruled out blockages since my arteries were fine. They did however say I had a weakened heart muscle and severe dilated cardiomyopathy. They say my ejection fraction is somewhere between 20 and 25%. Now they are talking about installing a biventricular pacemaker. Needless to say my head is spinning from the news and all the info I have found online. I am currently on 3.125mg Coreg, 0.25mg Digitek, and 5mg Prinivil. Can anyone offer any advice on what the is happening? As the song says, it's the end of the world as we know it and I feel fine!

Tom, January 16, 2002 - Hi, This is an Url I think would be of great interest to those of you who have to go through monthly or even more frequent PT (INR) "blood letting" for the test. Those of you on Coumadin will know what I mean. See

Gino's January 16 reply to John W's January 14, 2002 - Ciao John, About the combination of ARB plus ACE 1 inhibitor, it does not seem to work well in CHF patients who take also beta-blockers. This is the result of a post hoc analysis of Valheft trial:

We evaluated the long-term effects of adding the ARB valsartan to standard CHF therapy. A total of 5010 patients with class 2, class 3, or class 4 CHF were randomly assigned to take 160 mg valsartan or placebo twice daily. Primary outcomes were mortality and the combined mortality and morbidity [risk of cardiac arrest with resuscitation, hospitalization for heart failure, or receiving IV therapy for at least 4 hours].
     Overall mortality was similar in the 2 groups. Incidence of the combined endpoint, however, was 13.2% lower in the valsartan group than with placebo, mainly because of fewer patients hospitalized for heart failure (455 or18.2%) in the placebo group versus 346 or 13.8% in the valsartan group. Valsartan Patients also saw significant improvements in heart class, ejection fraction, signs and symptoms of heart failure, and quality of life compared to placebo. In a post hoc analysis in subgroups of those already taking ACE inhibitors or beta-blockers at study start, valsartan had a favorable effect in patients taking neither of these drugs, or just one of these drugs. However, valsartan had an adverse effect in patients already taking both an ACE inhibitor and a beta-blocker.
     Conclusions: Valsartan significantly reduces the combined endpoint of mortality and morbidity. Valsartan improves signs and symptoms in CHF patients when added to existing therapy. However, the observation of an adverse effect on mortality and morbidity in the subgroup taking valsartan, an ACE inhibitor, and a beta-blocker, raises concern about the potential safety of this specific combination.
Source: N Engl J Med 2001 Dec 6;345(23):1667-75
Title: A randomized trial of the angiotensin-receptor blocker valsartan in chronic heart failure.
Authors: Cohn JN, Tognoni G; Valsartan Heart Failure Trial Investigators.

Ciao, Gino. (e-mail address withheld by Jon)

Jon, January 16, 2002 - Hi everyone, I have been updating pages so fast I forgot to keep track so I could post the changes. I did go through all the links on the Transplant and main Links pages, though - I do remember that much. ;-)
     Andrea has agreed to host a chat once a week so I have made the changes in the chat page. If anyone else wants to host a chat, just let me know and send me a bio so people can get a sense of who you are.
     Also, I don't know who may be intersted but you can now send a health-type e-card to your friends or relatives through my site. Just see the link near the top of the page. Jon.

Bill C, January 16, 2002 - Hi everyone, It has been awhile since I posted, although I try to keep up with posts. I developed DCM in 1995 but I am stable and still doing okay. My wife developed heart failure in July during the 31st week of her pregnancy. She is now stable, though not 100%.
     The ER doc told us our child was dead but I prayed like never before and the Lord told me to lay my head on her stomach and believe in Him. Rachel Renee is now almost 6 months old. She has heart failure caused by a ventricular septal defect and is taking digoxin, Lasix and Aldactone. She is to have open heart surgery February 5 to close the hole in her heart. I would request prayers for her from you guys. Thanks Jon, for your hard work, Bill C.

Debbie's January 17 reply to Bill C's January 16, 2002 - Hi Bill, You have my prayers and positive thoughts for your baby girl, and also for you and your wife. My family has encountered numerous medical problems for many years, including my brother who was born with a heart defect (hole in heart). He had surgery at a young age too. He is now 49 years old. Prayers are answered. My best to you and yours, Debbie.

Vee's January 17 reply to Autumn's January 11, 2002 - Hi Autumn, I take hydralazine too. When I read your post, I called the pharmacist and she told me that hydralazine can cause peripheral neuropathies by interfering with the body's use of pyridoxine (vitamin B6). Are you taking a vitamin B supplement? I had stopped taking vitamins but after reading your post I went out and bought some B vitamins. Some of your neurological symptoms sound more related to spinal nerves and causes rather than peripheral ones. I didn't think peripheral neuritis from medication side effects would typically progress to problems such as bowel/bladder control or breathing difficulties. Does your neurologist think that stopping the hydralazine would significantly delay or reverse progression?
     I started hydralazine because my blood pressure was still spiraling out of control despite taking all the usual CHF meds. I couldn't tolerate a high dose so they added a nitroglycerin patch and I am doing fine with that. Have you tried other vasodilators such as Isordil or nitroglycerin? How large is your hydralazine dose?
     I think you should definitely get those second opinions as soon as possible and find a cardiologist who is willing to work with you neurologist to find some acceptable compromises!

Ruthie A, January 17, 2002 - Hello to all, Even though I am one of the "old timers" I have run up against a new one. When I take a nitro tablet or two for chest pain, I develop sores under my tongue. They start out as an irritation, then develop into canker-type sores. Has anyone else had this problem? Is there a way to prevent these sores? Any help will be appreciated more than you know. :-( Ruthie A.

Ginger, January 17, 2002 - Hi, I got this from a friend and hope maybe someone has an answer to it or some advice.

     I have a couple of questions that have gone on, one for 5 years. I was told after a Cardiolite study 5 years ago that I had to slow down because I was at high risk of Sudden Cardiac Death. I just received some additional info because I need unrelated surgery. I was told I have 'functional chest pain with vasospasms'. What does this mean?. I also had a trip to the ER in late November, though my EKG had always been normal. My BP has increased over the last 5 to 6 years but it was 120 over 40 and I had an abnormal EKG. The ER staff released me, saying that the tests were not bad enough to admit me. Thank you.

Thanks, and hugs and prayers, Ginger.

Nancy S' January 17 reply to Cindy H's January 16, 2002 - Hi Cindy, I have left-sided failure but I also do not have any blockages or high cholesterol and my BP is very low. I have problems taking some of the meds because of it. I just had an ICD implanted in October and my blood pressure is up since then. The lowest it went was 88/44 and now it's running about 110/50 most of the time. Good luck with your treatment. They can do amazing things now, Nancy.

Jon, January 18, 2002 - Hi everyone, All the links on the Nutrient Stew pages have been updated. Also, more information on taurine and L-carnitine has been added to the nutrients page there. Paul M and Jim T have updated their bios, and Andrea has a new one up.
     Is anyone else interested in participating in a survey by a CHF specialist? It would be just for CHF patients on Coreg who have improved numbers since taking Coreg but who still don't feel much better. Let me know by e-mail. I just need a working e-mail address and a first name with last initial for now.
     Also, if anyone has a CHF specialist they like, why not ask him to list his practice here? Thanks, Jon.

Davida S' January 18 reply to Bill C's January 16, 2002 - Hi Bill, My prayers are with you. Hold on to your faith.

Pat M's January 18 reply to Autumn's January 11, 2002 - Hi Autumn, I take hydralazine and isorbide 3 times per day in addition to my CHF and Lotensin meds to keep my blood pressure down. The only effect I notice is that I take a nap for 20 to 30 minutes after taking them, and then I'm okay. Otherwise I become dizzy and lightheaded. I hope this helps. It sounds like you might need to check your symptoms out with your doctor. God bless, Pat M.

Shirley's January 18 reply to Bill C's January 16, 2002 - Hi Bill, I just wanted you to know that your family is in my prayers, especially your daughter. My friends and I will especially pray on February 5th for the surgeon also. God bless, Shirley.

Loretta D, January 19, 2002 - Hi, I have been considering the possibility of having weight loss surgery. I have CHF with an EF of 40%, obstructive sleep apnea, and weigh 360 pounds. I am 52 years old and cannot lose weight. Has anyone else with heart problems had this kind of surgery? If so, I would like to hear your thoughts. I really depend upon this group for so much. Thanks.

Joseph P's January 19 reply to Cindy H's January 16, 2002 - Hi Cindy, I guess there are many ways to look at or refer to something but what is right-sided CHF? Could you tell me what that may be?

Jack D's January 21 reply to Joseph P's January 19, 2002 - Hi Joseph, This should answer all your questions about right-sided CHF: Take your pick.

Jamie, January 21, 2002 - Hi, Does anyone know anything about the Acorn procedure where they put a sock-like mesh around the heart? The doctors are recommending this for me. Thanks.

Joseph P's January 21 reply to Ginger's January 17, 2002 - Hi Ginger, I went to an electrophysiologist who checked me for a lot of things, and sudden death was one of the things he tested for. He implanted an ICD to help prevent this. From what I under stand about this, for me it was that the electrical pathways stood a good chance of separating and could cause my death.

John's January 21 reply to Loretta D's January 19, 2002 - Hi, My 39 year old daughter had the stomach-stapling and intestinal bypass surgery a few months ago. She has no heart problems. As a result of the surgery and a whole string of botched-up doctor and hospital goofs, she literally almost died. She is now in slow recovery, but it can happen.

John's January 21 reply to Ruthie A's January 17, 2002 - Hi Ruthie,When I was using nitro regularly I went to the nitro spray and long-acting nitro pills.The spray is more expensive but has a much longer shelf life than the pills.

Joe, January 21, 2002 - Hi all, Is anyone familiar with an IV drug called Natrecor? My doctor wants me to take part in a 12 week study in the hospital once a week. I have an EF of 20% and also have ARDS. Any info appreciated. Thanks, Joe.

Norma, January 21, 2002 - Hi, I take 200 mg of Hawthorne, plus 230mg CoQl0, as well as a multivitamin, 400 IU Vitamin E, and 500mg Vitamin C. I also take digoxin (Lanoxin), Aldactone (spironolactone), and furosemide. I was diagnosed in l998 with CHF but since then my cardiologist says I have cardiomyopathy. My EF was l9 but is now 27%. I also feel better but doctors still tell me gloom and doom, and urge Coreg or heart transplant. My blood pressure has always been low, so I think Coreg would be a mistake. Is anyone else taking Hawthorne? Thank you for letting me join in this question/answer forum. I am a new computer user - one week - so pleased to hear from you all!

Autumn's January 21 reply to Vee's January 17, 2002 - Hi Vee, I have been taking both a multiple vitamin and a B-complex vitamin for the past year. It helped for awhile but then my neuropathy progressed anyway. My physiatrist (nerve and muscle doctor) says this is "a very bad disease" and as it progresses, it affects the fibers controlling muscles, bowel, and other organs, although it may or may not continue to progress to those levels. She said it is not from my back problems. The doctors do not seem willing to work with each other coordinating my meds. The cardiologist wants me on hydrazaline and the physiatrist goes along. Until I can get a second opinion, I have titrated down to half my usual dose of hydrazaline and my neuropathy is not as bad. My peripheral nerves were already damaged from a gas leak accident years ago, so I was more susceptable. I appreciate your response very much, Autumn.

Doris R, January 21, 2002 - Hello Jon and all of you at The Beat! I would like to report, after being diagnosed in August of 1998 and applying for Social Security in October of 1998, that I was finally approved and began receiving my Social Security in December of 2001. I just wanted to say keep at it, pray for the peace of God, and you'll out live the red tape. My credit is a mess but at least now I can keep my very patient and wonderfully kind doctor and purchase my meds! I bid you kindness, joy, love and happiness, Doris R.

Sharon, January 21, 2002 - Hi All, I hope the holidays left you all well. I am writing with a dizziness/fainting issue. I have DCM, CHF and an EF of 30%. I just had my meds changed. I was already taking amiodarone (Cordarone), Zestril, and wellbutrin. Now I am also taking Coreg and Aldactone. I was out of the Coreg for 2 days, and started it and the Aldactone again on Saturday afternoon. I had taken 2 doses when I fell from dizziness yesterday, Sunday afternoon. I don't think I went completely out and I had just stood up from the computer. Normally dizziness from standing passes quickly but I did not feel well for about 15 to 20 minutes. Now I know that dizziness is listed as a side effect on most drugs I am taking and that standing up suddenly also does this. Being Sunday, I did not go in to the doc's but I am wondering if I should have gone in to the hospital. They always say to come in if there are certain symptoms, but people, we get those all the time, right? So my question is, to those who are a little experienced with this, how do you know it is bad enough to go in? What are your signals? Thank you all for being here!

Jon, January 24, 2002 - Hi everyone, I'm sorry for the gap in coverage, so to speak. My e-mail server died (caught on fire) and apparently I lost all the posts and messages sent to me for almost 2 days. I am still trying to get everything set back up in working order (configured) with my web host. So it goes, running a site on the cheap. <g> Jon.

Karen F, January 24, 2002 - Hi, February is American Heart Month and every year the hospital near me gives a series of free lectures on Tuesday evenings throughout the month on different cardiac problems. These are geared for the general public and are great! This year, the first Tuesday's speaker will be my CHF specialist and the evening will be devoted to Congestive Heart Failure: what it is, living with it, and new treatments and advances. I have been to several of these February heart lectures in past years and I especially enjoyed the one on heart valve replacements the year my aortic valve was replaced for the second time. Generally there are heart-healthy munchies and mingling before the presentation, and prepared folders with educational handouts on the topic, and on general heart health, are distributed. The speaker makes his presentation from 7 to 9 PM, allowing time for audience questions. I adore my CHF doctor and am really looking forward to his presentation. I have a followup appointment scheduled with him the week after the lecture, so he will be getting critiques from me! <lol> I already have several family members interested in attending the presentation with me in order to better understand CHF and how it complicates my life. Now maybe they'll understand that I'm not lazy - just tired! Anyway, my point is to check with your local hospitals, universities, health centers and cardiologists. It is very likely there may be similar programs close to you during the month of February.

Davida S' January 24 reply to Sharon's January 21, 2002 - Hi Sharon, If you faint you should go to the doctor immediately because fainting can be a dangerous sign. Getting lightheaded can be different. If you rise slowly and wait a few seconds befor walking, it may make a difference. Avoid bending down and raising up quickly.
     Missing important meds for 2 days is not good at all. Stick to the plan and take seriously arising too quickly. You can always call your doctor's nurse and leave a message for him regarding your symptoms. If you have concerns, you should bounce them off the doctor.

Michael S' January 24 reply to Sharon's January 21, 2002 - Hi Sharon, All I know is that I was told to go to the hospital if I passed out. I have CHF with an EF of 24% at my last checkup in November of 2001. I am on amiodarone (Cordarone), digoxin (Lanoxin), 12.5mg twice a day of Coreg, candesarten, 325mg enteric aspirin, and a couple of meds for upset stomach and stopping up. My cardiologist says my dizziness is caused by not enough blood flow (orthostatic hypotension).
     Someone mentioned they were in danger of sudden death from overexertion and that is causing me some concern. I have an ICD for ventricular fibrillation (amiodorone now controls this). I could barely walk when I got out of hospital August 1 of last year. I graduated cardiac rehab the first week of September last year and was doing a consistent 2.5 mph on the treadmill for 25 minutes. My checkup with my cardiac specialist was December 4, 2001, and he told me he would see me in a year. That kind of shocked me, although I have another heart specialist that I see every 3 months to check on my implant. Currently I go to the gym 6 days a week and lift weights in moderation, and walk for 30 minutes at 3.5 mph with occasional spurts of 4.5 mph for 30 seconds. I seem to feel a lot better and my question is: In anyone's experience, am I putting myself in danger?
     One last thing. I will probably never know for sure what caused my CHF; whether it was a heart murmur when I was younger, too many ciggies, being too fat (5'8" and 396 lbs at time of heart attack), eating anything I wanted, not exercising, or what. Please beware. I had a doctor tell me that the pain in my left arm was only bursitis and not the angina I had for 9 months prior to my hospitalization. He said I did not need an EKG. He has since been appointed the head doctor of the clinic. Get a second opinion, please!
     I am sorry this is so long and will try to do better next time. Good info about life span. God be with you.

Jon's January 24 reply to Michael S' January 24, 2002 - Hi Michael, Not all - or even most - CHFers are at risk when doing normal exercising. Risk for SCD most often applies to those with hypertrophic cardiomyopathy, which is fairly rare and it may apply to CHFers with ventricular arrhythmias - these people must check with their docs before exercising. It may also apply to those CHFers who have had blockages in their coronary arteries or who have had strokes - or it may not.
     Check with your CHF doc and he'll tell you whether it is safe for you to exercise, and to what degree. My EF is up to about 50% and my Vo2max is up to at least 20. My CHF was idiopathic. My current workout is treadmill twice a week, upper body weights twice a week, and lower body weights twice a week. Ask your doc and then exercise! It is doing wonders for me. Jon.

Cindy, January 25, 2002 - Hi, Does everyone who has CHF get a lowering of the QRS? Each time I become decompensated, the voltage in my QRS complex becomes lower. Right now the voltage is really low in III, aVF, and V3, and AVL. During my first episode of CHF, the voltage in lead aVL and III lowered. Another attack brought the voltage in aVF low and last attack in addition to the ones already permanently lowered, lead V3 lowered. This lowering has made lead V3 lower than lead V2.
     Does anyone know why this occurs? Does it happen to all with CHF? Why aren't my doctors doing something? It obviously making my heart weaker and weaker. I can tell by endurance and walking and swelling. Does anyone else have copies of EKGs done when they are having an episode of worsening? Are your QRS complexes losing voltage?

Jon's January 25 reply to Cindy's January 25, 2002 - Hi Cindy, I don't think I understand your view of the relationship between changes seen on EKG and your CHF. Do you think electrical problems are worsening your CHF? Or do you think your worsening CHF is causing changes in your heart's electrical system? What do you think your doctor should be doing in response? Have you asked them to relate your EKG results to possible need for VRT therapy (pacer)? I'm sorry I don't quite follow your post but hey, I'm just a patient too. :-) Jon.

Michael S, January 25, 2002 - Hi, Just to clarify a couple of things. I should have reread my post before sending it off. I graduated cardiac rehab in November not December. I weighed 296 lbs, not 396! I am currently 209 lbs with 24 more to go. Thanks and joy to all.

Joe S' January 25 reply to Michael S' January 24, 2002 - Hi Michael, I think everything you talked about contributed to CHF. I did exactly the same things you did and got the same results. I even started with just a heart murmur from Scarlet Fever when I was five. Regarding exercise, 2 1/2 years ago I moved to the eastern Sierras of California and changed my entire life style, with long walks twice a day. When I first started I couldn't go more than 100 yards without resting. Now I can go the full distance and rarely have to stop. Of course some days are worse than others. At my last major check up they told me I have my CHF under control. My heart is still bad but I show no CHF symptoms. I still can't walk uphill, bend over too much, or work over my head, but other than those things I'm doing pretty well. I've even been losing some weight. Don't worry about dying due to exercise, just take it slow. Joe S.

Paul B, January 26, 2002 - Hi, My cardiologist says that I have a "touch of heart failure." My EF is 40%. He has had me on 6.25mg Coreg BID for the last year. After reading info at your site, it appears that the general treatment includes an ACE inhibitor and a higher dose of Coreg. Is this only for more advanced cases of HF or do studies indicate that I should change my meds? Thanks.
Jon's note: Hi Paul, Check out the Target Dose page and CHF Guidelines

Joe S, January 26, 2002 - Hi Jon, A few weeks ago you mentioned you built a porch or something, with little side effects. I can dig in my garden, hoe and rake, etc, and I usually don't feel bad at all and sometimes feel better. However, for the past week I've been putting in baseboard in my house and feel rotten. Could it be working on the floor, sawing, or even hammering? It seems like every time I use my hands outside of the strike zone, I feel rotten. Any ideas? Joe S.

Jon's January 26 reply to Joe S' January 26, 2002 - Hi Joe, I don't know. The work I did was not nearly as tough as building a porch and it tuckered me out pretty good for a full week afterward. Overall, though, I was pleased with the lack of serious after-effects. Your problem may not be heart function but rather your body's use of the blood/oxygen it does get from your heart. You may have physical fitness problems underlying this, or you may have endothelial dysfunction. The endothelium is the layer of cells that lines the blood vessels, and they are affected by CHF. I would talk to my doc and then work on a fitness program. If you are on one, maybe it needs changing - mine did. If not, perhaps you should get a good checkover by your heart doc, then your regular doc, to look for a cause. Jon.

Shirley, January 26, 2002 - Hi, On January10th I requested information on biventricular pacing and a companion study sponsored by the Guidant Corporation. A woman named Maxine e-mailed me about the Medtronic device and she gave me a phone number I could call for more info. Being computer illiterate, I inadvertantly erased the message. If you should see this letter Maxine, would you e-mail me one more time so I can call that number? Thanks. If anyone else has info on Medtronic's device would you please contact me? Shirley.

Stephanie's January 26 reply to Joe S' January 26, 2002 - Hi Joe, You said that you were putting in baseboard, which involves a lot of squatting, bending, and kneeling. All of these things are very difficult for me. I feel really rotten and dizzy upon rising. The doc said that it is just a part of the disease, Stephanie.

Jon, January 26, 2002 - Hi everyone, The LVAD page and the Artificial Heart page have been updated. Jon.

Mary, January 28, 2002 - Hi, Could someone tell me the feeling that you get from your heart problems? Every time I use my hands, especially grasping something, I feel a sinking feeling in my chest and then I become extremely weak. This happens when I sit down for too long also. My doctor has no idea so I am just living with it. I never sit down anymore. I know I'm lucky to be able to have no symptoms when I stand, and many people have no relief, but I really would like to figure this out. Thank you.

Amelia, January 28, 2002 - Hi everyone, It's been awhile since I posted but have been reading your posts. Well, I graduated. I have been seeing my CHF specialist just about every week since last April. My EF was 24%, and I had a-fib, an atrial septum aneurysm, and TIAs. Now I don't need to see him for 3 months. I am on 20mg Vasotec, 25mg Toprol-XL, Lasix, and Coumadin. I feel pretty good, with just the typical tireness, SOB, and that washed-out feeling. Now that I have a break from one doc, I have to see another. I had to get out in our first snow of the year, and I slipped and broke my foot. Oh well, I've got to go have some laughs in life, and it could have been worse - if someone saw me flying! After all, I do have pride in being able to walk in the snow without taking a dive. Best to all, Amelia.

Ralph's January 28 reply to Sharon's January 21, 2002 - Hi, I was diagnosed with acute CHF in April, 2000, and was prescribed many medications. My initial ejection fraction was 25% with a left ventricle diastolic size of 7.5 cm. I was prescribed the usual CHF drugs: a diuretic, ACE inhibitor, beta-blocker, digoxin. My Coreg dose was gradually raised to 25mg BID. I described many side effects to my doctor, including the feeling of hibernating after the initial dizziness went away. Within 6 months after dosing up, I had my dose reduced to 12.5mg TID. Soon after that I cut the end of my left index finger off. Weeks before doing this, I visited a psychiatrist who prescribed me Paxil because of the depression I was experiencing. When I reduced my Coreg to 12.5mg BID, I realized that this cerebral deficiency improved because I could remember telephone numbers again. I also stopped taking Paxil on the date of my injury. The injury occurred a few hours after my morning Paxil dose.
     I learned afterwards that Coreg is a beta adrenoreceptor blocking medication that works by reducing the constriction of blood vessels. I learned later Paxil constricts blood vessels in the brain. Coreg slows the heart rate but Paxil can increase the heart rate. My problem is the lack of clear description on the pharmacy hand out. I later read the package insert, which stated that a blood pressure test should have been done on the up-dose, one hour after dispensing. I was never advised by the doctors of the risks involved in taking this medication and now know that very few people get to 12.5mg BID, let alone 25mg. I think people should be aware that Coreg affects adrenalin production and will cause people in stressful situations to not focus or react normally. The doctors don't tell you this because they fear you won't take the meds. I would rather not have used a power tool.
     My doctors never advised me of the risks involve in taking the drugs, especially when I described some side effects. They kept the consult brief and emphasized the importance of staying on high doses of the medication. I now am on 25% of the prescribed dose of my meds and maintain a 55% ejection fraction. My left ventricle is 5.9cm, down from 7.5cm. My aortic root went from 3.2cm to 4.7cm and now is 4.3cm. This correlates with the drug use but I can't get a straight answer out of the doctors. The worst part of this all is now that I am educated to my condition and medications, the doctors are all treating me like a troublemaker. My idiopathic dilated cardiomyopathy - I personally believe - resulted from or was contributed to, by a prolonged malicious lawsuit against my business. No doctor will consider chronic raging stress as a factor but will give me a drug that blocks the fight or flight gland.
     I suggest anyone who is in a stressful situation that extreme caution should be observed. I also notice my tolerance of patience is limited so be careful in rush hour traffic. Do you have any information on dilated aortic root and the effects from medications?

Jon's January 28 reply to Ralph's January 28, 2002 - Hi everyone, First, I am pretty sure Ralph is sending this same letter to multiple places on the web, because this is the third time I have received the exact same message, twice by e-mail and now to the message board. I replied to his first e-mail but he never answered me.
     Just to make one point clearer, Coreg's main action is not to prevent constriction of blood vessels. It's alpha-blocking action (not its beta-blocking action) does have this effect but it is not the drug's strongest or primary action.
     To Ralph, it really sounds like your problem is with your doctors rather than your meds. While it would certainly be great if pharmacy hand outs covered everything, there is also the web, your doctor, the pharmacist himself, and the public library to learn about a drug. Hospital librarians are usually very helpful as well. However, your doctor and pharmacist should be the ones to describe and warn you of possible interactions.
     I don't really know anything about Paxil but as a journeyman cabinetmaker I know that when taking antidepressants, one should not be working in the wood shop, especially when having the kind of dizziness and mental fuzziness you describe. ;-) I think the Paxil might have been a mistake. Coreg causes depression in some people, and I think your Coreg dose maybe should have been reduced or you should have been switched to Toprol-XL before trying antidepressants; Just this non-doctor's opinion.
     Personally, I just think that many doctors don't worry about side effects until they occur, and that's why such effects are rarely mentioned beforehand to the patient. That may not be wise on their part but I personally haven't seen any trend toward doctors deliberately hiding potential side effects from patients just to make a drug more attractive, except possibly in the case of amiodarone. Maybe I'm wrong.
     I really hate playing Devil's Advocate but I guess that's what I am doing here. Lots of people get to 25mg BID of Coreg. I was up to 50mg BID for years before bringing the dose down with the cooperation of my CHF specialist after seeing my EF rise significantly. Don't get me wrong - a lot of people do get stuck at lower doses and some people can't tolerate Coreg at all, but I don't think it's accurate to say that most people never make a target dose.
     On one point I definitely agree with you, Ralph. Coreg does strongly affect the fight or flight response. When I got heavily stressed, like when a family member blew a blood vessel and I had to rush them to the ER in the middle of the night at flank speed, I had a very difficult time "coming down" from my body's physical stress response. It made me sick for about 2 or 3 hours afterward. Greatly reducing my Coreg dose has made this much better.
     To everyone, I may be a bit slow with posts for a day or three. I had to change and upload every single page on my site (both servers) to ward off Microsoft's new "smart tag" technology that threatens to really screw over every webmaster on the planet who likes his site the way it is. It wore me out. Jon.

Nikos K, January 28, 2002 - Hi everybody, I have 2 simple questions. I have DCM with an EF of about 15 to 20% and I am functional class 3. My treatment includes:

  1. carvedilol (Coreg in the USA) at 12.5 mg twice a day
  2. Aldactone at 25 mg a day
  3. Lasix at 40 mg twice a day
  4. Accupril at 5 mg twice a day
  5. An anticoagulant

My first question is, since I started Coreg (replacing sotalol, which replaced metoprolol) and added Lasix for further relief, I have been experiencing an increased amount of saliva all the time, especially after I drink or eat even limited amounts of liquid or food. It's very annoying and it becomes tiring; like the CHF fatigue was not enough. Has anyone else experienced this and if so, have you found any solutions?
     My second question is, I feel a big difference in my functional ability (mainly walking) from morning (reasonable) to evening (very tired or even exhausted). I have tried to establish whether it relates to the time I take my medication or to whether I have eaten or not, but I can't still give an answer. Any advice is most welcome.
     Last but not least I feel I have to mention the following. I may have missed somewhere in the site about the sponsors (hospitals, companies?) and the way this WWW site that I found offering critically important information is funded. Jon, please let us know how we can possibly contribute. I want to see the site flourishing and expanding, and if money is a problem some of us may have the possibility to help, even if in a limited manner. All the best to all of you from Nikos from Greece.

Jon's January 28 reply to Nikos K's January 28, 2002 - Hi Nikos, There are no sponsors except the readers themselves on occasion. I pay the bills although my web host gives me a heavily discounted rate to keep me online. I have accepted donations in the past from a couple of companies but I am not a non-proft corporation, I am just an individual. This means that the US government heavily taxes every contribution made to help run this site, making it impractical for me to accept them unless I am really desperate.
     If anyone out there is a lawyer or accountant and wants to help me incorporate as a non-profit for no charge, please let me know. I'd be delighted to do so but don't want to turn loose the necessary cash, which is very tight these days. Jon.

Mary Lou's January 29 reply to Autumn's January 21, 2002 - Hi Autumn, I have peripheral neuropathy too, but I do not take hydralazine. My PN is thought to have been caused by rheumatoid arthritis. My neurologist has prescribed 600mg Neurontin BID, 150mg Pamelor in th eevening (down from 150mg BID) plus one mg vitamin B12 (not a complex B vitamin, just B12). This was added after a blood test used to determine B12 level showed that I was deficient. Perhaps you could ask your physiatrist if this would be of benefit to your neuropathy. Be well, Mary Lou.

Sabrina, January 29, 2002 - Hi, I am a graduate student working on a project to help patients with heart problems get a good night's rest. Having trouble getting to sleep is a major complaint of patients with congestive heart failure, and my team and I really want to develop a solution to help you out. I would really appreciate it if you could please tell me any complaints you have about sleeping at night, and perhaps what techniques you use to help yourself get a good night's rest. Best wishes, Sabrina.
Jon's note: Please respond to this post by e-mail. Thanks

Dawn, January 29, 2002 - Hi everyone, I need some help. Does anyone have a relief for arthritis pain? I have had a transplant, thus most of the normal meds are not an option for me. I have it in my left hip so cardiac rehab is very painful most times. Any ideas are greatly appreciated.

Ralph H's January 29 reply to Jon's January 28, 2002 - Hi Jon, Thank you for your reply. I consulted with my fourth PCP at Bristol Park Medical group and now am told that when he listened to my heart I had an S3 that indicated my CHF was acting up. I asked him what it was and he would not elaborate. I went with my wife, file, and notebook, and was placed in an adversarial position. He said I should not have all this information and that it is only confusing me. I asked him about the normal values of the echo since my left ventricular diastolic size is now 5.9 and was almost back to normal size, depending on which normal value reading you look at. I am 6'2" and 170lbs and could not get a straight answer from him on where the normal values are determined. The PCP said "you get it off the machine." I also asked him about the one hour BP test for Coreg during dose increase and he said it is only taken at the original initiation of the dose. I asked him about hawthorne and he didn't know what it was. I requested a visit for a second opinion with a cardiologist and was denied.
     Jon, have you ever heard of anyone getting drugs free or do I just wait for liver failure down the road? I agree about the alpha receptor acting as a vasodilator and was trying to brief in that part of the discussion. I ordered the new computer two days before the finger injury and that is when I began researching the drugs. I was always told to consult your doctor. You have so much more information and I want to thank you. Remember, I am a contractor who is not very comfortable on the computer. The medical group is very prejudiced about me and labeled me as a troublemaker since I ask so many questions.
     How long has Coreg been on the market and should I be closely monitoring my BP when reducing the drug? Also, February is heart healthy month in Orange County, California. Hoag Hospital offers heart seminars at night so you might suggest that readers check their local hospital for similar activities. Ralph from Huntington Beach.

Jon's January 29 reply to Ralph H's January 29, 2002 - Hi Ralph, A lot of people are somewhat uncomfortable on the pooter - you're not alone. <g> That's why I suggest public libraries (PDRs and more), your local hospital's medical library, and local pharmacist.
     You should be able to fid a bit of information about free drugs at my Links page, and you can always search my entire site, or just parts of it. You already know your real problem - a PCP treating heart failure instead of a CHF specialist. Unfortunately, I have no idea what the best way to pressure an HMO doc into making a proper referral might be. Maybe someone who has been down that road can post some tips or ideas.
     Coreg tablets were FDA approved for CHF treatment in 1999 (September 8) but carvedilol has been around and tested since the 1980s if memory serves me. Frankly, reducing Coreg dose is not as wise as it might seem until you are really sure you understand the drug's actions and your own health situation. If you have CAD, prior MI, arrhythmia, or certain other "situations" it pays to be certain that reducing your Coreg dose will give more benefit than risk. Your heart rate and BP are almost certain to rise with reduced dose so if you want to chart them it certainly wouldn't hurt. Even though I have reduced my own Coreg dose (in full cooperation with my CHF doc), I don't recommend doing so to CHFers in general. The drug can give (and did give me) a lot of benefit, although more to some people than others. Jon.

Joe S' January 29 reply to Jon's January 28, 2002 - Hi Jon Ol' friend, I just found out why putting in that baseboard made me so fatigued. I saw my cardiologist yesterday and had an echo. Low and behold, my aortic valve has closed another 10% in one year. They finally decided I need it replaced, about time, after living with it for 58 years now. I sort of think the decision was made primarily because I have Medicare now and didn't have any insurance until 9 months ago. I have tons of questions for everyone, but the only one I can think of right now is, should I choose a pig, cow or artificial valve? By the way, my cholesterol is 123, my triglycerides are down, I have no more CHF and my heart is still strong. I still think an enlarged heart is not necessarily a bad thing. Joe S.

Frank Smith's January 29 reply to Mary Lou's January 29, 2002 - Hi all, Mary Lou, since peripheral neuropathy is such a painful (but intermittent in most cases) disease, I am wondering since you did not say, just how effective the drug therapy you use is to relieve your pain, and whether or not your pain is sufficiently constant for you to take your pills on a regular basis. My experience with this disease is that no matter what I take, nothing is effective when the damaged nerves decide to become active and excruciatingly painful. Later, Frank.

Walter K's January 29 reply to Mary Lou's January 29, 2002 - Hi Mary Lou, I have also been diagnosed with peripheral neuropathy, supposed to be of the hereditary kind though I don't remember anyone in my background having it. Anyway, going on neurontin was suggested by my CHF doc of all people, and I kicked it around with my internist. I did not start neurontin because I really don't want to take more meds. I am on 6 CHF drugs plus 3 others now, and that seems enough. However, I would be very interested in your experience with neurontin if Jon doesn't think it is too off-topic. Any side effects? Any beneficial effects etc? Walter K from Pennsylvania.
Jon's note: Not at all. Please feel free to discuss it.

Norma's January 29 reply to Ralph H's January 29, 2002 - Hello Ralph, I have been taking hawthorne since l998 and no doctor or cardiologist I have seen has ever heard of it either. They are not too interested in alternative medicine - what my recent cardiologist called my "herbs and roots." Hawthorne is used widely in Europe for early stage congestive heart failure and has been found superior to medications for slowing down the condition. It has the ability to improve arrhythmias, angina, blood pressure and arterial hardening. As this last is very important with cardiomyopathy, the technician at my last echo told me my heart muscle was flexible and therefore the 4 rating I have been given is much better in my case than a 2 or 3 rating where there has been hardening. I take 200mg daily, split into 2 doses. Of course, I am also on prescribed medications, although I have refused Coreg because I feel I am doing well without it and its side effects do not appeal to me. To each his own. The hawthorne, as well as CoQ10, have really helped me. Good luck.

Henry, January 30, 2002 - Hi, I have a question regarding the new ruling from the Veteran's Administration which states that a veteran with diabetes who served in Vietnam can now qualify for VA Disability Compensation. I have diabetes, end-stage heart failure, and renal insufficiency. I am receiving Social Security payments but would like to apply for VA compensation so my family will receive better benefits. If anyone has experience or advice on how to proceed with the application process, please e-mail me. I already picked up the application form from the VA office.
     Please advise ASAP because I have been hospitalized twice this month and the doctor advised that I could suffer from sudden death anytime. Thanks and may God bless each of you, Henry.

Ruthie A's January 30 reply to Walter K's January 29, 2002 - Hi Walter, I have neuropathy in my feet and lower legs due to a spinal cord injury from a blown disk in my lower back. I take 600mg neurontin 3 times a day, plus 900mg at bedtime. Most of the time the drug keeps the tingling down to a tolerable level. Sometimes the pain and tingling takes off to an unbelievable intensity, and all I can do is writhe and pray the time passes quickly until my next dose. I also have to make sure that my doses are taken on time or I have problems with the pain and tingling. The only side effect I have from neurontin is slight sleepiness about an hour after taking it.
     If for some reason I was not able to take neurontin I don't know what I would do. It is literally a godsend for me. I take a lot of other medications for CHF, arthritis, HRT, etc,... Neurontin does not interact with any of the meds I take. As for convenience, I have a box that I fill each week with my meds for each day of the week. Neurontin is just another one to add to the mix. If your doctors think you need neurontin and you have the kind of pain and tingling that it would alleviate, I would highly recommend trying it. The worst that could happen is that it would not work for you. What do you have to lose? Ruthie A.

Jon's January 30 reply to Walter K's January 29, 2002 - Hi Walter, I am weird. My doctor tried me on neurontin for my chronic severe foot pain (not structural). I had a weird and nasty side effect. It made me hyper-sensitive to the slightest touch - even a slight breeze or clothing on my skin made me crazy. I stopped taking it after the second day. My doc said he had never heard of anything like it, so I doubt you have to worry about this happening to you. Still, I thought I should mention it. My pain is not neuropathy so the drug might be a great blessing for those with that specific problem. My reaction stopped completely within 12 hours of stopping the drug, so no harm done in trying. Jon.

Ralph H's January 30 reply to Jon's January 29, 2002 - Hi Jon, Thanks again. I made a glitch and really wanted to know if anyone has gotten off the meds and leads a normal drug-free life. I have no CAD or MI, just an enlarged heart that was originally diagnosed as bronchitis or asthma. I was then prescribed Serevent two months before I originally went in the the hospital. My new PCP won't see me again because of the complaint I wrote to the group about the previous two doctors and I now am pursuing redress with the HMO.
     He raised my digoxin to 0.25mg because I tested low. I wonder what this will do to my PVCs and what the increased load will do to my aortic root? I suggest anyone who has difficulty with their provider to be careful and read the manual from the HMO. By the way, my first PCP was a doctor of osteopathy and scheduled an echo 3 weeks after being told by a walk-in doctor that I had an enlarged heart from an x-ray. I believe these goof-ups caused my condition to be worse than needed.

Jon's January 30 reply to Ralph H's January 30, 2002 - Hi Ralph, One thing at a time. <g> As every CHF specialist I have talked to has said, all CHFers should stay on at least an ACE inhibitor for life, if not an ACE inhibitor and a beta-blocker. I plan to stay on an ACE inhibitor, even though I have greatly improved. I do not want to risk a CHF recurrence. People have posted many times (like Dallas), saying that once they were considered "well" their doctors took them off all heart meds and before long they were back in heart failure big-time - and back on meds.
     Probably close to half of us with CHF were misdiagnosed, improperly treated, and had our CHF either made worse or our heart damage considerably worsened by poor doctoring. It's very common, especially in those who get it younger. I was diagnosed at age 36. My (ex)doctor almost killed me with incorrect diagnoses for about a year and all kinds of treatments for ailments I did not actually have, then with unnecessary surgery that really came within an inch of my life.
     In my personal opinion, by letting this stay on your mind you stay angry and bitter. This gives the person who did a poor job of doctoring great power over your entire life. After all, his actions stay on your mind consciously all the time, turning you to anger over what might have been. Only forgiving him and moving on removes his power over you. That's my take, anyway.
     I made a conscious decision to forgive my doctor and not to pursue legal or other restitution. He is just a crummy (unskilled with poor judgement) doctor. I do not for a minute believe that he consciously decided to ruin my life, and I refuse to allow him to ruin it any further by making me feel like a victim. Instead, I moved on and continue to do so every day. It's my life and no one is going to rain on my parade. ;-) I am sorry to get so carried away. It's a topic that I deal with a lot in e-mail. Jon.

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

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