The paperwork never ends The Archives
May 1-15, 2005 Archive Index

Joseph S 5-1     seek suggestions on Social Security Disability
Mikey S 5-1     my exercise history
Jon's 5-1 reply to Mikey S's 5-1     exercise
Lowell P's 5-1 reply to Jon's 4-30     good advice
Gino T's 5-1 reply to Jon's 4-26     PR interval on EKG
Norma L's 5-1 reply to Helen's 4-30     sublingual nitro
Dave Y 5-1     is Coreg better for long-term use than metoprolol?
Tunny G's 5-2 reply to Sandy N's 4-30     devices
Dave Y's 5-2 reply to Jon's 5-1     Coreg versus metoprolol tartrate
Donna V 5-3     biventricular pacemaker experience
Serena 5-3     nitro, nitric oxide, caths
Jon's 5-3 reply to Serena's 5-3     nitro, nitric oxide, caths
Susan L's 5-4 reply to Jon's 4-30     to work or go on disability
Tammy L 5-4     worried about weight loss after first treatment
Judy B 5-4     is this normal for a cardiology clinic? and more
Susan D's 5-5 reply to Tammy L's 5-4     losing a lot of weight at first
Bill H's 5-5 reply to Judy B's 5-4     all those initials
Barb S 5-5     are these fears normal? seek CHF forum
Deborah G 5-5     does this sound right?
Shane R's 5-5 reply to Tammy L's 5-4     losing a lot of weight at first
Tom S' 5-6 reply to Barb S' 5-5     my CHF experience
Tony M's 5-6 reply to Deborah G's 5-5     raising EF, life style changes
Jacky B 5-6     what are fusion complexes?
Jon's 5-6 reply to Jacky B's 5-6     fusion complex
Chad C 5-6     is lower heart rate good? what happened?
Sandy N's 5-6 reply to Barb N's 5-5     welcome
Victoria Holley 5-6     seek suggestions for raising husband's spirits
Jacky B's 5-8 reply to Jon's 5-6     fusion complexes
Helen L's 5-8 reply to Jon's 4-30     nitro & chest pain, Ornish diet
Jon's 5-8 reply to Helen L's 5-8     nitro & chest pain, Ornish diet
Charles W 5-8     muscle plug trial questions
Jon's 5-8 reply to Charles W's 5-8     muscle plug info
Oliver E 5-8     could Viagra be a heart failure drug?
Jon's 5-8 reply to Oliver E's 5-8     I don't know
Bill's 5-9 reply to Oliver E's 5-8     Viagra as a heart failure drug
Oliver 5-9     what does having heart failure feel like?
Chuck F's 5-9 reply to Oliver's 5-9     imagining how heart failure feels
Jimmie R 5-10     should I apply for disability? get another doc?
Joseph S' 5-10 reply to Victoria Holley's 5-6     my experience - please get a second opinion
Joseph S 5-10     Coreg and weight loss questions
Jon's 5-10 reply to Joseph S' 5-10     Coreg, weight loss & more
Charles W's 5-10 reply to Oliver's 5-9     coping with CHF
Ann M's 5-10 reply to Helen L's 5-8     different diets
Marty C's 5-11 reply to Ann M's 5-10     Atkins diet experience
Peter S 5-11     adding an ARB to ACE inhibitor for heart failure
El Requa 5-11     update after device implant
Giorg 5-12     should I cycle on and off supplements?
Jon's 5-12 reply to Giorg's 5-12     nope
Marty C 5-12     EF/BNP relationship, question
Helen L's 5-12 reply to Jon's 5-8     question about rales
Donna C 5-12     "noise" in upper heart chamber
Jon 5-12     will be out of town a day or so
Mary Anne M 5-15     question about contrast echo & more
Sandy N 5-15     Natrecor article
Jon's 5-15 reply to Sandy N's 5-15     Natrecor
Joy K's 5-15 reply to Marty C's 5-12     the ups and downs of EF
Jon's 5-15 reply to Joy K's 5-15     the ups and downs of EF
Lowell P 5-15     BNP, BUN, and creatinine
Lowell P 5-15     questions on Coumadin's bleeding risk
Jenny M 5-15     seek right-heart cath & mitral valve surgery experiences
Mikey S 5-15     what about caffeine?
Jon's 5-15 reply to Mikey S' 5-15     caffeine
Sandy I's 5-15 reply to Joy's 5-15     love that concern!
Bill H's 5-15 reply to Lowell P's 5-15     Coumadin experience

Joseph S, May 1, 2005 - Hello again everyone, I would first like to say thank you for the responses I have received from my first post to this site. I am really very nervous now because I have been researching about SSD and I have found many sources that answered many of my questions including SSD processes. What scares me is I found the listings and grids, and under the sedentary jobs for my age group of 18 to 44 years at, it has under table 1, residual functional capacity, maximum sustained work capability limited to sedentary work as a result of severe medical determinable impairment, section 201.00. It will be very difficult for me to be approved for disability because of my age alone. Can anyone look at this link and give me your thoughts on it? I have cardiomyopathy, enlarged heart, Peripheral Artery Disease (am having a femoral endarterectomy with patch angiogram done May 3rd). My age is 36 and I've worked as an unskilled warehouse worker for most of my job career. As of this month, my financial reserves are dry and I have my son's graduation coming up. I'm feeling the monetary pressures as you all know the feeling.

Mikey S, May 1, 2005 - Hi all, Jon, I wish you the best of luck in your job search. I'm just returning to work myself. I wanted to fill in some background on how I arrived at my exercise routine as mentioned in my last post. First of all, I haven't worked in 3 years. I tried for the first three months after I got out of the hospital but I couldn't cut it. I would go to my car at lunch time and try to sleep. I started cardiac rehab one month after I was diagnosed. I walked and rode a stationary bike for a total of 45 minutes 3 times a week for 3 months. Walking at 4 mph I was gasping for air. When I completed this I was determined to start my own exercise program centered around running.
     I took a stress test and was told it was safe to let my heart rate reach 150 beats per minute. However, when I tried to run at 5 mph my heart rate was 180 or more after 3 minutes. I did it anyway, always trying to increase the amount I could do. I went from 3 to 5 to 10, 15 , 20 and up to 30 minutes. I increased my speed from 5 mph eventually to 7.5 mph. Sometimes I could only increase my time by 30 seconds or my speed by 1/10 or 2/10 mph. When I first started, I ran in a gym and I was so weak and lightheaded and tired after running that it was a major effort to change my clothes and shoes after I finished. I could barely make the three block walk home. For the first 6 months I was so tired after I ran that it was the only thing I could do in the whole day. I was too weak to digest my food and had many digestive problems. When I could run for more than 15 minutes, the bouncing motion gave me acid reflux which got steadily worse. I even threw up on the treadmill because I was determined to complete a run. I solved this by running first thing in the morning, before eating anything.
     Gradually I improved to where I could accomplish a few things in a day after a morning run. Six months after leaving work I enrolled in college to major in exercise science and nutrition. I wanted to learn about my illness and eventually become a physical therapist. At first it was very hard to go to school and study productively after a run but it got easier with time. People with CHF discover that thinking requires physical strength. At first I could only study and concentrate for 10 or 15 minutes at a time. I would take a nap, get up and try to study again. I had completed a few credits many years ago and now I have 90 credits with a 3.95 grade point average. However I have run out of money and I am going back to work to save and finance the rest of my education.
     After dedicating 3 years to my rehab I can say I'm not afraid to try going back to work.

Jon's May 1 reply to Mikey S' May 1, 2005 - Hi Mikey, I just want to restate that for most CHFers, using heart rate for exercise simply does not work, largely due to beta-blocker use. I won't run or jog because of my knees. For obvious reasons, I do not recommend a routine like yours for CHFers but if it works for you, it's fine with me. <g>
     I agree completely that it was largely my exercise routine of the past 3 years that convinced me I could try working locally again, although half my exercise is resistance training and half is walking. It's a balance I believe in very strongly. Jon.

Lowell P's May 1 reply to Jon's April 30, 2005 - Hi Jon, You gave the lady from Australia good advice. You're a gem Jon.

Gino T's May 1 reply to Jon's April 26, 2005 - Hi Jon, You were right that a "normal" PR interval ranges between roughly 120 and 200 ms, so 178 msec is in the normal range. PR is the time spent by electrical impulse to pass from atria to ventricles. PR interval is influenced by many factors like exercise, enhanced vagal activity, electrolyte imbalances (the most common for example hypo or hperkalemia) and drugs (like digoxin and beta-blockers).
Jon's note: Thanks Gino! And it's great to hear from you!

Norma L's May 1 reply to Helen's April 30, 2005 - Hi Helen, Listen to what Jon said and try the sublingual nitro. I had to take as high as 3 to get relief. After I was put on meds I only carry them with me in case of an emergency. I have greatly improved. I take one or so before I sing or before I do something more strenuous. Singing is really hard on me, but I love it!
Jon's note: And Helen, if the nitro works, you may have some heart artery blockages so please consider that cath, really.

Dave Y, May 1, 2005 - Hi, Has anyone compared the advantages/disadvantages between Coreg and metoprolol? My cardiologist wants me to consider changing from 200 mg metoprolol to lower dose Coreg for long term heart failure management. Dave.
Jon's note: Do you mean metoprolol (metoprolol tartrate) or Toprol-XL (metoprolol succinate)?

Tunny G's May 2 reply to Sandy N's April 30, 2005 - Thanks Sandy, Jon had mentioned that you probably had a combination of ICD/Pacemaker. He was right.

Dave Y's May 2 reply to Jon's May 1, 2005 - Hi Jon, I mean metoprolol tartrate, also called Lopressor.
Jon's note: Have you read the COMET trial information? Read the three articles starting at

Donna V, May 3, 2005 - Hello Jon and all, I had a biventricular implanted in late November of 2004. By January 31st my EF had improved from 5% to 20% - it was never above 17% since my 2003 diagnosis). I have idiopathic, non-ischemic dilated cardiomyopathy - the mystery viral thing (Jon's note: lots of doctors call this viral but it is not. This is literally a cardiomyopathy of unknown cause - just like mine). Last week I returned to do a Vo2Max test (I hate it!) and to see the CHF specialist again, a wonderful man. Without an echo this time there were no EF or heart size numbers.
     I don't see him again for a year and will get pacemaker checks and echo locally. I did not need to do that test to know I am better. I was better and he was very pleased. I scored a 20 ( from a struggling 15 in September and before my November implant. My time went up to over 12 from barely 6 minutes before. My legs betrayed me and could not keep up with the greater speed and incline after 12 minutes. I am now slowly regaining muscle mass. I wasn't feeling the distress oor dizziness I did the first time on the Vo2Max when my EF was 5%.
     I'll not have another echo for several months to know if EF has increased above the 20% from January but I know it has. After the next echo I will also find out if my heart has reshaped and decreaed from the 7.5 cm size. I no longer hear it pounding on my ribs at night ( I had a mental picture that kept me awake). I was told the implant would decrease my risk of sudden death but no promises were made about improved EF or reduced heart size. I was also told that I might be better able to tolerate my meds. I was and remain on 50mg Coreg (that was rough). My Altace was increased from 5mg to 10mg per day with no problem. Lasix was cut from 80mg per day to 40mg and again, no problem.
     I do continue to avoid the sodium as if it's poision and restrict fluid intake. My weight remains steady unless I eat a big meal elsewhere at night. I do not tire as easily but I do get really fatigued, the meds do not trash me out so much. My leg pain has improved so may be my ogygen flows better. My knees haven't much to do with my heart, more so age? I have more stamina and have actually worked in my yard a little. I do sit in a plastic chair to dig around but enjoy that too. It's more than I could do for the past two years! I believe that any newfound strength and stamina is because of the BiV pacemaker. Through grace only do I know that I can have a quality of life even if different from what I imagined in earlier and heathier days. I know I should be dead now without this amazing thing that is in my chest. I intend to live now and look forward to the pacer's new improved replacement in a few years, depending on the battery. So far I've not been zapped one time.
     I note more and more people posting about BiV pacers. The docs tell us the medical stuff but I'm here if anyone has questions about the procedure and it's logistical aftermath, which is not that terrible really. Hair can be washed, showers taken, no pain, just clumsy for a few weeks.
     I'm glad you are back, Jon! You help people and save lives more than you can ever know! Very good friends met through this site too! Donna V.

Serena, May 3, 2005 - Hi Jon, Not to be ignorant, but what is sublingual nitro? Is it the nitro spray or nitro patch? My dad wears a nitro patch and after reading your reply to a post I wonder if it means a cath is in order? As well I just saw a news bit about nitric oxide potentially causing heart enlargement (in mice). Based on this nitric oxide study I wonder if a daily nitro patch is a good idea? Thank you so much for doing your hardest to keep the message boards going.

Jon's May 3 reply to Serena's May 3, 2005 - Hi Serena, I can see where it gets confusing. Nitro is nitroglycerine, not nitric oxide (which is naturally produced in your own body). Sublingual means that the nitro tablet dissolves under the tongue very quickly and is absorbed into the body and has its effect in a minute or less. Both sublingual tablets and the spray work this way. The nitro patch is slow-release and puts a slow steady stream of nitro into your body over a period of many hours. The effect is much less but is sustained this way.
     Using sublingual nitro the way I suggested is just a short cut in people who don't know if they have heart artery blockages. Sublingual nitro quickly dilates (enlarges) blood vessels. When a person gets chest pain it might be from "tight" (constricted or narrowed) blood vessels that feed the heart. If a nitro tab quickly relieves the pain, there is a good chance it was caused by narrowed arteries so that person should be checked for CAD, usually by cath.
     Your dad probably has already been tested for CAD so a cath now shouldn't be a high priority. Of course, it never hurts to check and make sure he's been tested for it! I hope this helps. Jon.

Susan L's May 4 reply to Jon's April 30, 2005 - Hi Jon, I think you are right. Thanks a lot. Susan.

Tammy L, May 4, 2005 - Hello everyone, My boyfriend was just recently diagnosed with congestive heart failure. After being in the hospital for 8 days, he's now home but we're worried about his weight. Before diagnosis his weight was 192 lbs and now his weight is 170 lbs and he's really getting worried. He says he feels like he's shrinking. I'm waiting for the doctor to call me but I thought some of your experiences could help us understand better. Thanks.

Judy B, May 4, 2005 - Hi all, My husband was diagnosed with heart failure the first of March. He has an EF of 20%. He is seeing a cardiologist in a group of doctors and he gets someone different every time he goes for an appointment. Sometimes they are nurse practitioners. I'm wondering if this is normal. Can someone tell me what these initials after a doctors name mean: MD FACC and DO FACOI? Thank you, Judy.

Susan D's May 5 reply to Tammy L's May 4, 2005 - Hi everyone, When my father-in-law went into the hospital on December 29 he weighed 144 pounds. On February 1 he weighed 115 pounds. Today he weighs about 124. He is 88 years old and a small man. The doc told me he had edema throughout his body, not just in his legs and feet which we could easily see and this "weight" loss was really fluid loss. When he was started on all the new heart meds including Lasix and Aldactone (both diuretics) his body had to adjust - get rid of the excess fluid, figure out what is a real weight and then come back a bit. We were warned that a quick weight loss could signal a body that is now too dry and blood levels would need to be monitored so this did not happen. Best of luck to you and your husband - it's a lot to learn all at once!

Bill H's May 5 Judy B's May 4, 2005 - Hi Judy I'm not sure but I think it's code for I got My Dollars, now you get yours.

Barb S, May 5, 2005 - Hi, I found this forum by mistake and hope it is appropriate for my problem. I just got out of the hospital two days ago diagnosed with mild CHF. I was put in the hospital by the emergency room doctor because my oxygen level was 78 and my stomach was bloated. I also had a rash and bronchitis. My x-rays showed fluid in the lung area. My liver was pushed or stretched, according to doctors due to the fluid retention in my stomach. Has anyone ever heard of this. I am a diabetic type 2 and have been for 24 years. It is controlled. I am afraid to drink water or even eat for that matter - are these normal fears? How often do people have a relapse? Thanks for listening. Barb.
     Also, I am looking for a forum with other CHF sufferers. Does anyone know of one? Thanks.

Deborah G, May 5, 2005 - Hi everyone, My father was diagnosed with CHF (dilated cardiomyopathy) with an EF of 15%. We were completely overwhelmed as he is 58, runs a family business and we were taken completely by surprise although the breathing was due to asthma and the fatigue due to working too hard for his age. He has been asthmatic since birth and they feel he might have sleep apnea. He has also always been overweight, however his arteries are clear. He eats well, not a fast-food/prepared-food kind of guy. They are checking for thyroid issues as well. The doctors used the viral exclusionary diagnosis with us, saying that they really have no idea how this happened to him.
     They implanted a pacemaker and defibrillator so he could be safe, but they keep mentioning heart transpant and stated that there was only a 5% chance that his EF would improve. I see two posts on this board of people with similar conditions who have improved EF. Is this truly rare or are the docs being very worst case scenario minded?
Jon's note: Unless we are missing some important information, what he needs is treatment by a CHF specialist - he won't pull the heart transplant card nearly so fast. Idiopathic CHF usually responds to proper meds. He also needs a sleep lab test. Be sure to read The Manual as well.

Shane R's May 5 reply to Tammy L's May 4, 2005 - Hi Tammy, You didn't give a lot of details about meds, etc,..., so I may be making an assumption with this. When I was first diagnosed with CHF I had gained about 15 lbs from fluid retension. Before leaving the hospital, I had already lost probably 8 lbs. just due to the removal of excess fluid and probably lost about 20 lbs before balancing out. This may be what's happening with your boyfriend as well.

Tom S' May 6 reply to Barb S' May 5, 2005 - Hi Barb, Nearly 11 years ago I had my first real CHF episode, entering the hospital blown up all over the place with my legs inflated to about four or five times normal - to the point of the skin tearing, bloated belly, a left testicular hydrocele and water blisters all over my butt with an EF of 15%.
     Ten days later they sent me home (Medicaid ran out) with a prediction that I would live no more than a year or perhaps three at the outside with the condition I was in. Heart caths showed that I had clean arteries and veins so that was not a problem, just the heart had been attacked by "something" and I needed to apply for SS disabilit,y which I did and got without a lick of trouble.
     My first relapse occured about four years ago and I have had one each year since then, ironically occuring around the same time each year. This year I held out till February and finally insisted on going to the emergency room even though my cardiologist didn't take my complaints too seriously. I was in the hospital (I swear it was a Medicare room) for seven days and again had a heart cath on the heels of an echocardiogram. This time my EF was "immeasureable" and was guesstimated at around 5% to 10%. My oxygen levels were all over the map so I was sent home with supplemental oxygen (an extractor plus portable tanks and an emergency three-day tank) and here I sit waiting again for death to knock on the door.
     So I would say I had a damn good run the first time and it was all done medically with no heroic surgeries or transplants. I feel very tired and have to rest a lot but I am very alert and very happy with the time I had and continue to have. So take it easy, do what the doctors tell you to do and who knows, you may even break my record for longevity.

Tony M's May 6 reply to Deborah G's May 5, 2005 - Hello Debra, I wouldn't bite on the 5% number that your dad won't improve his ejection fraction. First of all, if it's 5% that's still lots of people. I guess Jon knows more numbers than I do but that's got to thousands or a few hundred thousand just here in the US alone that improve every year. I was at 17% three years ago and was 43 years old but mine improved to close to 50% last year.
     I had a major neck operation almost a year ago. They have now found the bone bank bone didn't work in grafts and will redo it. I didn't complain much about the pain untill I realized my blood pressure was very high for seveal months and they think it dropped my EF back down to 20% again. I changed pain medicines and bought a blood pressure cuff. I now take methadone for pain and it helped. I also have a family member who is not a blood relative and he is your father's age. Four years ago his EF was at 14%. He quit drinking, lost weight and he's a robust 40% now. I know of some other people here in the city I live in who have regained their health with diet, taking the right medicines, and not drinking.
     My cardio doctor is at a major University college here in Alabama and does most of the heart transplants there. He says "no alcohol for anybody who has a enlarged heart" or anyone who has heart problems for that matter. I go to same doctor up there myself and he told my relative that if you drink, he won't see you. Debra, read this site - it's helpful. Jon's been a benefit to his brothers and sisters who have a commmon bond because of this disease. Good luck. Tony M.

Jacky B, May 6, 2005 - Hi everybody, On my last EKG report it said, that when compared to my last EKG, fusion complexes are now present and premature ventricular beats are now present - tell me something I don't know! What are fusion complexes? Jacky.

Jon's May 6 reply to Jacky B's May 6, 2005 - Hi Jacky, See for explanations and pictures on EKG and the heart's electrical system and how it works.
     During a fusion complex, two electrical impulses are both trying to control one of the heart's chambers at the same time. Since the heart is trying to obey two different commands at the same time, the resulting heart beat looks kind of like 2 different types of beat at the same time, thus a "fusion" complex. The first part looks normal but the last half is abnormal due to the heart muscle's confusion. A fusion complex is usually more "narrow" than a PVC on an EKG reading.
     Fusion beats are usually treated as PVCs. If the overall heart rate is alright, fusion beats are usually not a problem unless there are a lot of them. I hope it helps. Jon.

Chad C, May 6, 2005 - Hi, I am age 32 and was diagnosed with CHF last year. We caught it at an early stage and have been fairly under control since then. My blood pressure has been low for a year and a half in the 95/60 range but my pulse has maintained around 105. Now my blood pressure is the same but my pulse is running around 59 at rest. I am only taking enalapril (ACE inhibitor) and Lasix. What could have caused this change, and is it a good or bad thing?

Sandy N's May 6 reply to Barb S' May 5, 2005 - Hi Barb, Welcome to the best CHF forum on the Net. You have what most of us have and you will find the information here is the most updated anywhere. Best of luck to you!

Victoria Holley, May 6, 2005 - Hello, My husband just turned 41 in April already has had to have to stents put in his right aortic artery and had 4 stents put in his right leg 6 months ago. This week he had two more in the same leg. In his left leg there is a very light pulse and his leg is cold. The doctor said he had very small arteries and is sending him to a new doctor because he said he has done all he can do for him.
     The doctor told us that it is a very good possibility that he will have to have both his legs removed. We have three children from ages 9 to 16. Has anybody had to deal with this? Could you tell me what to expect and how you have dealt with this? My problem is that my husband also suffers from depression. I could sure use any suggestions to keep his spirits up. Thank you.

Jacky B's May 8 reply to Jon's May 6, 2005 - Hi Jon, Thanks for your reply on fusion complexes. I have LBBB with a QRS of 150. If the fusion complex is narrow, does this mean the width varies? I am wearing a 24 hour Holter at the end of the week to see if all this is something to be concerned about or not. Jacky.
Jon's note: This is kind of out of my area. Do you mean, do fusion complexes vary in width from one to the next, or are they different in width from regular beats on an EKG? Maybe Gino will see this and put in his two cents worth.

Helen L's May 8 reply to Jon's April 30, 2005 - Hi Jon, Thank you for the nitro advice. I now have those pills and carry them everywhere with me. I took three 15 minutes apart to kill the chest pain when I was at the gym contemplating whether to go on the treadmill or not. I then went to the book store and bought the Dr Dean Ornish reversing heart disease book. I have followed the reversal diet for the past week and the chest pains are definitely not as strong. I have also found that stress definitely makes the chest pains worse. The Ornish reversal diet is very different than the Atkins diet and I was wondering if it was safe for people who have or possibly have CHF? Helen.

Jon's May 8 reply to Helen L's May 8, 2005 - Hi Helen, If the nitro tabs work, you need to seriously consider a cath to check for blockages in your heart's arteries, really. Taking nitro tabs 15 minutes apart is not the usual way to take them. If that's the only way they work for your chest pain, talk to your cardiologist about what that may mean as soon as possible. I really only meant for you to do this once to see if artery blockages might be present, then for you to get tested immediately if it worked - really! Nitro tabs are not an answer, just a temporary measure.
     I don't really know much about the Ornish diet except that no one I have spoken with has been able to stick with it for the long term. Since it discourages meat intake and is low-fat, I personally don't think much of it. I'm not talking trials or studies, just that meat-free diets are unsafe in my opinion in general, and low-fat is well, let's just say that I eat a high-fat diet with very good results. <g> Jon.

Charles W, May 8, 2005 - Hi everyone, A year ago there were major headlines about a study conducted by Dr. Robert E. Michler (then chief of cardiology at Ohio State University) with the University of Arizona Heart Institute. It suggested that the heart, previously thought non-regenerative, perhaps is. Heart failure patients were injected with their own healthy leg muscle cells directly into the diseased heart. The results were good. Hearts perhaps are regenerative. Patients who could barely crawl out of bed were going bowling weekly. Another study was planned. This one much larger and broader. I understand that Michler has left OSU for a position at the Einstein College of Medicine. Has this bit of promising news been deemed a bit of over-promise? Does anyone know about this? Thanks. Charles W.

Jon's May 8 reply to Charles W's May 8, 2005 - Hi Charles, Maybe others can update this information with something newer. The idea has been a work in progress since Doris Taylor made the news with it at Duke University quite a few years ago. See the following for similar articles:
     Stem cell therapy articles can be found on those same pages. I hope it helps. Jon.

Oliver E, May 8, 2005 - Hi all, Does anyone have any further information about the research at John Hopkins that showed Viagra was potentially able to reverse heart enlargement, dilation and improve function? See It looks like it could potentially be a revolutionary new drug for heart failure. I wonder how long it would take a drug like this to go through human trials if it has already been approved for other uses. Jon, any thoughts?

Jon's May 8 reply to Oliver E's May 8, 2005 - Hi Oliver, For one explanation of why Viagra may improve some aspects of heart failure, at least symptoms-wise, see Since Viagra can be dangerous to some CHFers with ischemia and to those who take nitrates (nitro), its use for heart failure would require very strict patient selection standards.
     The article you mention quotes a dose of 100mg per one kg body weight in mice. The maximum dose in humans is currently 100 mg regardless of body weight. I would have to take a dose of 8300 mg to match what those mice were taking. It's a wait-and-see on this one, I would say. Jon.

Bill's May 9 reply to Oliver E's May 8, 2005 - Wow, Viagra for a CHF patient is mind boggling - a twofer - help my heart and put some love in my life. I sure hope this is due soon. Bill. <g>

Oliver, May 9, 2005 - Hi everybody, What do people really feel like with CHF? I read The Manual and it's great but I still don't know whether what I am experiencing is definitely all CHF related or some of it is mental or caused by something else. I have biventricular "mild to moderate" heart enlargement (LVEDV of 6 cm) but "normal" heart function (LVEF 61%, RVEF 41%). My doctors think that with those numbers and never having been into overt heart failure I should feel fine even if my heart has enlarged but for over a year now I feel miserable.
     I have my good days and my bad days. I feel short of breath most of the time but it is not usually like a "panting" shortness of breath as if I have run a marathon, but more of a heaviness in the chest like someone is sitting on me. Sometimes drinking caffeine relieves it, but only temporarily. Also, I sometimes get a cough and normally have a wheeze, but am able to exercise pretty effectively (run for 30 minutes at 120 to 150 bpm and at times I can even breathe more clearly during exercise although my cough often gets worse) though I do feel more fatigued than before when I used to play squash and lift weights.
     I also get palpitations from time to time but I don't have an arrhythmia. I do have chest pains regularly. Often I feel dizzy or lightheaded. I have incredibly vivid dreams and wake up in the morning with this strange "adrenaline" feeling in my chest, shivering and shaking. More than anything I just have a constant sense of being ill at ease and unwell. It's strange. I take Zoloft, which has settled things somewhat but has not removed the core symptoms.
     When I read the heart class descriptions I feel like I might be 2 or 3 but that seems ridiculous since I have normal heart function but class one says no symptoms and I definitely have symptoms - I just can't be 100% sure they are all heart related although they feel that way. I don't get any visible edema although at times I feel very mild swelling in my feet and ankles but it isn't noticeable.
     What does your shortness of breath feel like? What does having CHF really feel like? I just can't think think that I have anything else and so am going to add a beta-blocker to my ACE inhibitor (and nutrient stew) this week. What do you think? I am sorry for such an open-ended question but I am just desperate to find something that will let me feel like my old self. Oliver.

Chuck F's May 9 reply to Oliver's May 9, 2005 - Hi Oliver, Everyone's heart failure is different as people perceive things in different ways, and stages of heart failure extent of failure/damage all play in different ways. One way I used to tell patients' families during patient and family teaching to experience what a heart failure patient feels like is to place a clothespin on their nose, a straw in their mouth, and then run up several flights of stairs while breathing only through the straw.
     You didn't say if you have been seen by a cardiologist or heart failure specialist, what your history is, or what your medications are. It is good to read about your disease processes but is also wise to make sure you see a cardiologist or heart failure specialist, plus quit the caffeine (no more than two regular-sized cups a day!).

Jimmie R, May 10, 2005 - Hi, I am a 55 year old male. I was told I have CHF about 2-1/2 months ago with a one-week stay in the hospital. On an echo I was found to have an EF of 15%. I also had a heart cath and nothing was found wrong. My problem is that I have 2 doctors who do not agree. One says to apply for disability and the other says I can go back to work. Do I get a new doc? Thank you. Jimmie R.

Joseph S' May 10 reply to Victoria Holley's May 6, 2005 - Hi Holly, I'm 36 and was diagnosed with cardiomyopathy with an EF of 25% in December of 2004. I had a heart cath done in December and didn't have any blockages in my arteries in my heart, which is just very weak and enlarged due to severe hypertension.
     Upon a follow up visit to my CHF specialist, I told him I had severe claudication in my right leg. They sent me to a vascular surgeon and sure enough, I had a 2-inch blockage in my right groin area that required them to perform a femoral endarterectomy with angioplasty (the diagnosis is peripheral artery disease). I just got out of the hospital Saturday 05-07-2005.
     The doctor also told me that I have arteries which didn't develop very well in my legs and they may also become blocked at anytime. However, this web site and counseling have both given me hope when I was (and am) feeling my worst. Tell your husband he must tell himself things can get better, talk to someone to release emotions, (be depressed very little if he must) and move on.
     Also, it may be a good idea to get rid of the doctor you have if he's telling you that your legs will have to be amputated and he can't do anything else. If you have medical coverage, find a good vascular surgeon and a counselor for depression. There are many more procedures that can and will be introduced to your husband before amputation should occur.

Joseph S, May 10, 2005 - Hello everyone, I want to talk about a few things. First, I have been a CHFer (cardiomyopathy) now for 9 months and have really educated myself on the subject. I believe my symptoms and treatment regimens are similar to other CHFers - ACE inhibitor and beta-blocker (Coreg).
     I am on the basic heart failure medical treatment plan but I don't see many of you taking initial doses of Coreg of 25mg twice a day. I noticed effects from the very beginning of treatment. I take diovan at 160mg, Norvasc at 10mg, Coreg at 25mg, aspirin, lexapro for depression, and trazadone as a sleep aid. Many days I am so dizzy and sick to my stomach I can't do much at all. I have told my CHF specialist as well as my regular doctor about this but they both tell me my pressure is down and that's great. Do they not feel that my medication should be adjusted because it is working?
     There are days that my pressure drops to as low as 95/52 but other days it is over normal range. I have also cut salt out of my diet and I don't swell up so the only diuretic I use is hydrochlorathyazide but I have gone from being 220 pounds to 183 pounds during this time. I can't fit any of my clothes and I feel like Im a walking toothpick because I have no mass now. Can anyone explain the weight loss besides for change in diet?

Jon's May 10 reply to Joseph S' May 10, 2005 - Hi Joseph, About the weight loss, there are several possibilities. You could have been overweight to start with, you could have lost a great dea of fluid that you had retained for a considerable time previously, you could be losing muscle mass due to deconditioning, or you could have cachexia. Any combination of these is also possible and I am sure I missed some possibilities that hopefully someone else will point out.
     I am very concerned about your description of your Coreg experience. No one - and I mean no one at all - should ever start at such a high dose of Coreg! This is unforgiveable for any doctor to do. I strongly recommend looking for another pair of doctors. These two don't even read the drug labels, much less the medical literature. No real CHF specialist would think of starting anyone at 25mg of Coreg - it could have been a grave danger to you. Also, Coreg is recognized to potentially worsen depression that is under medical treatment. Your doctors are way out of line in every way according to your stated description of their advice.
     You can't just stop Coreg cold, nor should you stop taking it. However, I recommend cutting your dose by roughly half for 2 to 6 weeks and then slowly raising it back to 25 mg to let your body properly adjust to the drug. Of course, let your doctors know what you want to do first so they can get their two cents worth in and monitor your condition.
     I don't know why you take Norvasc when your blood pressure is borderline too-low. Is there a medical reason for taking it while also taking Coreg and Diovan? Stopping the Norvasc - only under a doctor's supervision - might really help relieve your symptoms as well. For what it's worth, Jon.

Charles W's May 10 reply to Oliver's May 9, 2005 - Hi Oliver, Your e-mail is a scream for clarification, and I know precisely what you mean. Whom do you trust? Your cardiologist, your shrink, or your instincts? The answer is, of course, all three. I assume if you're on Zoloft, you're visiting a psychiatrist regularly and he is aware of your cardiac condition. Hopefully, your doctors are in communication with one another.
     I have CHF. I was diagnosed five years ago when I was hospitalized for injuries suffered during a near-fatal automobile accident, and it was determined that I had an arrhythmia. The arrhythmia was corrected through laser surgery. The CHF, of course, is not correctable. I envy your EF. Mine is, uh, somewhat lower, to put it politely. I also admire your endurance. You jog! I feel about jogging the way most people feel about root canals - I avoid them both.
     I know what you mean about "feeling miserable." The sense of unwellness. How much of it is due to CHF, how much to a possible mental component, and how much to possible other causes is an unsettled question? One comment in your note struck me. I too have vivid dreams, often sexual (my favorites) and sometimes nightmares (my least favorites) so grotesque that one evening about a year ago I awoke convinced that I was having a heart attack and called 911 - my my least favorite thing to do with the exception of jogging, of course. I was put on a monitor and no, I didn't have a heart attack.
     So I do understand your frustration. Of course, you want to feel better and I can't tell you how much I respect your determination to stay fit. All doctors agree that exercise is critical although I, of course, tend to edit out those recommendatons and allow them no role in my health decisions. I continue hoping that new research will demonstrate that exercise is bad for you. I scan the newspapers and medical journals daily. Good luck. Charles W.

Ann M's May 10 reply to Helen L's May 8, 2005 - Hi Helen, The Ornish diet is recommended for people who have had heart attacks, by Blue Cross of West Virginia and Pennsylvania. Blue Cross insurance runs programs for it in those states and maybe some others. The Pritikin diet, which is similar, has a number of articles on their web site at about reducing cholesterol and blood pressure by eating salt-free and vegetable protein instead of animal protein. Remember that Japanese and some other groups eat lots of soy and little meat, and don't have as much CAD. Reducing cholesterol intake may be beneficial for some people and some have reduced their cholesterol by diet alone. This doesn't really answer your question about CHF, the diet. However, Dr. Atkins of the famed diet was a fat man who is now dead, not a very good advertisement for his diet. It is very hard to eat low-fat and low-salt in our culture, but there are some vegetarians who do it all the time. Does a hospital near you have a what-to-eat program? I paid $20 for one and it was worth the money to get a nutritionist's advice.

Marty C's May 11 reply to Ann M's May 10, 2005 - Hello everyone, I disagree with Ann's assessment of Dr. Atkins and his diet. I've been on the diet for ten years. I lost 30 lbs within the first six months and kept it off while eating enjoyable foods. My total cholesterol went down from 226 to the 180s. My good cholesterol went up and my bad cholesterol went down. My blood pressure also went down and to top it off, I felt better. Atkins is not for everyone, but it sure works for me. Two other things - Dr. Atkins was not fat and his death was actually caused by a fall on the ice. Marty.

Peter S, May 11, 2005 - Hi all, For those who noted the mailing list message about a trial adding ARBs to ACE inhibitors for heart failure, I'd like to comment. I was put on an ARB (Atacand) several years ago because of the potential of aggravating existing non-heart related coughing problems. At that time ARBs were generally deemed second best to an ACE inhibitor although CHARM has validated ARB effectiveness. The two drugs work slightly differently. In general however, it was either one or the other. CHARM-added suggests that taking both an ACE inhibitor and an ARB, when dose is raised carefully, adds a significant benefit.
     In my particular case, with the non-heart coughing problem much improved, my cardiologist added an ACE inhibitor to my ARB a week ago - specifically 2.5 mg Altace to the existing daily 17 mg Atacand. The idea is to work the dose up slowly and carefully. My blood pressure sunk at first to roughly a 90/55 level but is coming back to my "normal" 110/70 level. If it does, and there is no undue coughing, we will raise the Altace dosage. I mention this because I am sure most regular doctors don't follow these developments. My cardiologist was aware of these studies but it was still me that proactively raised the subject at our last office meeting.

El Requa, May 11, 2005 - Hi all, I survived a mini-thoraocotomy done on the 27th of April for the purpose of placing a left ventricular epicardial lead. After 2 unsuccessful tries via the vein, I finally have a biventricular pacer. Today I have an ICD check, so I hope I am told all is well and it is working correctly. My BNP has been elevated higher than before the surgery and that was disappointing but it is starting to come down with higher doses of Lasix. I am short of breath a lot but figure it will take some time to get over this one.
     I asked for - and got - a small silastic chest tube instead of the big garden hose variety. I hardly knew it was in there. What a huge difference that made! I have been diligent about the salt thing, everything being made from scratch with no salt added.
     I have been told that this was the last step - the last thing they have to offer me. I am too small for a left ventricular pump and have no more room in there, so I may be placed on the heart transplant list soon. I am coming around to acceptance, knowing I will do whatever I have to do in order to have a functional life. For now, I am just concentrating on healing, enjoying and being thankful for each day.

Giorg, May 12, 2005 - Hi everybody, I have the following question for Jon and everybody who like me, who is trusting Jon's advice about supplements and are taking them. Does the body get used to supplements? I read somewhere in a weight-lifter's web site that they need to suspend taking supplements every now an then, otherwise supplements become ineffective. Someone suggests to take supplements for 4 months and then stop for 2 months, some other to take them for 5 days a week and then stop for 2 days. What is the correct strategy in taking and stopping supplements for maximizing the effects in DCM patients? I feel better with L-Carnitine and L-Arginine, but I' d like the effect will last! Thank you.

Jon's May 12 reply to Giorg's May 12, 2005 - Hi Giorg, Weightlifters take creatine for a different reason than CHFers do. That's the only supplement that is cycled by muscle builders. Creatine transport to skeletal muscle changes over time with creatine supplements so lots of bodybuilders cycle it on and off - usually 2 months on and one month off. This is not necessary when taking creatine for heart failure and does not apply to the other supplements either. I take them all and don't cycle any of them. Jon.

Marty C, May 12, 2005 - Hello everyone, I have a question on how to interpret my progress. I have just finished my first year with diagnosed CHF. My EF was about 25% when diagnosed, got up as high as 45 to 50% six months into Coreg/ACE/ARB therapy, then slid somewhat. I had an echo Friday and my EF came in at 35 to 40% but the great news according to my doc was that my BNP went from around 500 to under 50! I'm excited about that but still concerned about the EF slide. I think I'd rather have the higher EF than the lower BNP, but since I'm still able to exercise pretty aggressively 3 to 4 times a week, maybe I should just shut up and count my blessings. Particularly when I often read of many fellow CHFers who are dealing with far more difficult scenarios. Thanks for any feedback, and God bless. Marty.

Helen L's May 12 reply to Jon's May 8, 2005 - Hi Jon, Thank you so much for your reply. When I see the cardiologist the week after next, I will ask him about the nitro pills. I have not felt I had to take any since I lowered my calorie intake, walked half an hour a day and practiced being calmer. I was wondering if anyone with CHF had rales (crackling/wheezing when breathing)? I have a sort of crackling noise on inspiration (when I breathe in) and only when I lie down and all night. Is this an early or later symptom of CHF, or not a symptom of CHF at all? It seems to be listed as a symptom on some CHF info and not others.

Donna C, May 12, 2005 - Hi, Today I had my new ICD interrogated and the technician spoke of "noise" that showed up frequently in the upper heart chamber. She said it could be caused by closeness to equipment, but this would not apply to me. The "noise" started in the atrium about six months ago, and shows up night and day in a random pattern. My doctor was too busy to talk with the technician, and I would like to hear from someone that may have a "noise" problem also. Thanks! Donna.

Jon, May 12, 2005 - Hi everyone, I will be out of town attending my daughter's college graduation for the next couple of days so no posts will go up during that time. Jon.

Mary Anne M, May 15, 2005 - Hi, I just went through a work-up to have an biventricular pacemaker implanted. I had a treadmill exercise test and also had a contrast echo. Is this something new? I was told that it gives the doctor a better picture of your heart's function. He said my EF is now 30%, up from 26%. I am hopeful that the ICD will improve my quality of life. I do a lot but don't have the stamina I had when I first had bypass surgery and a mitral valve implant 5-1/2 years ago. Thanks Jon, for the wonderful site. It's a blessing.

Sandy N, May 15, 2005 - Hi everyone, I read an article from the Associated Press saying that the FDA is requiring new information on Natrecor's package insert for doctors. The AP article says that 4 studies have shown patients taking Natrecor are more likely to die within a month but it also says that 3 other studies have shown a lower risk of death on the drug. Supposedly, the new labeling also adds information on six month death rates that show virtually no increased risk of death with Natrecor use.

Jon's May 15 reply to Sandy N's May 15, 2005 - Hi everyone, I find this interesting for a couple of reasons. First, you can start to see why it's so difficult to decide what information to place on site, which to mail out, and which to store and watch for more information. Second, Natrecor is genetically engineered from the gene that produces a substance "natural" to the human heart. Guess which one? BNP. Yes, the same one the test measures. Please note that ANP, another peptide the human heart produces, is also in development as a genetically engineered CHF treatment called Ularitide (SIRIUS II trial).
     These are IV-only substances used for people with severe CHF episodes that are not responding well to other treatment, so the people taking them are already at much higher risk of death. That makes interpreting trial results even tougher. Add that some trials are not real trials but "studies" that analyze data from already-done trials to suck more info from them than they were designed to give, and it all starts getting murky.
     It may be that Natrecor and other genetically engineered substances will end up in the same light as inotropes - they make you feel better (reduce your symptoms) but may shorten your life. We really don't know yet, as shown by conflicting trial results. If this is so, it remains an individual decision about quality of life versus length of life. Jon.

Joy K's May 15 reply to Marty C's May 12, 2005 - Hi Marty, In regard to EF decrease on your last echo I too went the same route in March, 2005. My echo showed my EF to be 30 to 35% and it had previously been 40 to 45%. I had been steadily climbing from 15%. I was actually quite excited to find out that after 3 years my ventricles had decreased in size quite considerably and that was great news for me. My cardiologist insists on doing his own size interpretations because when done by different folks they seem to come up with different numbers.
     As we know EF percentages are very subjective. Again, the bottom line is how are you feeling, and do you have symptoms that should be addressed by a physician? When is your next echo scheduled? Do you feel comfortable with the time frame scheduled for your next echo? If you do not, I would suggest talking with your physcian about your concerns.
     It bothered me at first knowing my EF had decreased but hey, I am still alive and kicking. Being an RN and having worked most of my career in some way or form in a cardiac setting, trust me EF is subjective and can vary considerably. When I saw my own first echo I guestimated about 8% but it came in at 15%. Three days later it was 24%, which was interpreted after a heart cath. In a week the numbers were from 8% to 24%. Who really knew? I know that I felt awful and I was being treated for pulmonary edema. I was too sick to really think about any numbers. I honestly thought I was going to die and my one thought was did I remember to shave my legs before I came to the hospital! Just joking. Joy.

Jon's May 15 reply to Joy K's May 15, 2005 - Hi everyone, I agree with Joy that EF can change from day to day and possibly even hour to hour. It's also quite true that echo results must be "interpreted" based on each person's individual condition. I would like to add that EF result also strongly depends on which test measured it. An echo is the least reliable but cheapest way to measure EF. So many factors can affect its accuracy that it has a margin for error of roughly 8%. That means your actual EF when measured by an echo could actually be as much as 8% higher or lower than the listed result.
     MUGA is more accurate and cath more accurate still. Cath is especially accurate for measuring pressures since they are read directly instead of being calculated as they are in all other test methods. So don't get upset if one echo says 40% and the next one says 35% - your EF may be exactly the same in reality. Jon.

Lowell P, May 15, 2005 - Hi all, I had an appointment with my doc today. My BNP is 711, down from 900 a month ago. I am concerned about my creatinine at 1.8 from 1.5 though. The doc thinks I am not drinking enough water. Does this make sense? It seems like I could just reduce the Lasix but I wouldn't do that without a good reason. I wonder at what level creatinine levels become a serious concern? I asked but didn't get a good answer. His reply was it was more important to have a good BUN/creatinine ratio.
     My BUN was 43. I still feel very well and walk with no shortness of breath but my legs get a little tired. I wanted to ask about ARBs but didn't get the chance. I also wonder if my blood pressure is too high. Many people have blood pressure much lower than mine. My pressure varies between 120/65 to 135/75. Any comments welcome.

Lowell P, May 15, 2005 - Hello, I have been taking Coumadin for a year since my heart surgery and infarct. The local cardiologist believes it is important as a safeguard against strokes. My infarct is in the lower section of my left ventricle. Apaprently, this encourages blood clots which could be minimized by Coumadin. The CHF specialist I went to briefly (he was too far away) said the risk of brain damage from a blow to the head is more serious than the clotting threat. He also said there are no statistics that support the clotting theory. My regular doctor says he will do some more research into it. He has had four people on Coumadin who just this week had head injuries that required CT scans. Two of the ten went to surgery for cranial bleeding. Comments please.

Jenny M, May 15, 2005 - Hi everyone, I have just found this site and it's great! I have had CHF since 2000, and like most of you have been up and down. My EF runs from 15 to 20%. My doctor is talking about repair or replacing my mitral valve. I was wondering if any of you have this and if so, how it worked for you. Are you feeling any better? I also have an ICD/pacemaker. I have had it for about a year now and it has helped some. I have received a couple of shocks so I know it works. Also, Has any one had a Swan-Ganz (right heart cath through the neck) done? I'm due to get one next week. Thanks for any help you can give me. Jon, you have done a great job with the site, thanks.

Mikey S, May 15, 2005 - Hi all, Jon, I was wondering if you have an opinion on caffiene. The reason I ask is because I feel I can't get through the day without some, but I don't like the idea of needing a stimulant even if it's a mild one. I usually drink tea using two teabags per cup and try to avoid coffee. I find that this helps me overcome the lethargy caused by Vasotec and Lopressor.

Jon's May 15 reply to Mikey S' May 15, 2005 - Hi Mikey, Anything that speeds up heart rate obviously isn't good for someone with heart failure. With that said, if you're gonna drink caffeine, keep your daily intake constant so your doctor can get proper results with meds doses in spite of it. Jon.

Sandy I's May 15 reply to Joy's May 15, 2005 - Joy, That would be my concern also! <lol> Were my legs shaved?! Gotta love it! Jon, why didn't you address that concern in your reply? ;-) Sandy.

Bill H's May 15 reply to Lowell P's May 15, 2005 - Hi Lowell, I've been taking Coumadin for a year for a-fib. It is something that needed to be adjusted to get the right INR. I get my blood checked once a month to make sure the med is working the way it should.

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, 2005 Jon C.

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