The paperwork never ends The Archives
April 1-15, 2004 Archive Index

Jon 4-6     working on it
Kate's 4-6 reply to Myrtle C's 3-29     clinical trials
Kaye 4-6     am receiving ICD & more
Robert's 4-6 reply to Myrtle C's 3-29     neurontin
Ron 4-6     back and leg pain experience
Tom 4-6     should I increase my Coreg dose?
Eileen 4-6     is anyone else chilly all the time? & more
Michele 4-6     hair loss & regrowth experience
Janet's 4-6 reply to Myrtle C's 3-29     drug trials and natural substances
Jill S' 4-6 reply to Myrtle C's 3-29     neurontin experience
Hal 4-6     seek alternative treatment experiences
Eileen 4-6     seek growth hormone treatment experiences
Jon's 4-6 reply to Eileen's 4-6     rHGH versus HGH
Mike 4-6     will CRT pacing help me? EF concerns
Andy P 4-6     seek statin experiences, ideas and cath too
Alexandra 4-6     pacer implant experience & more
Barb's 4-7 reply to Hal's 4-6     have you been tested for diabetes?
Jack D's 4-7 reply to Myrtle C's 3-29     doctors with fancy titles
Jack D's 4-7 reply to Kate's 3-29     medical breakthroughs in China
Jack D's 4-7 reply to Jill S' 3-29     neurontin experience
Tom S 4-7     bottom of my feet have no feeling
Janet's 4-7 reply to Eileen's 4-6     human growth hormone & exercise
Janet's 4-7 reply to Hal's 4-6     insulin resistance, naturopaths
Jack D's 4-7 reply to Andy P's 4-6     statins and CHFers
Dwight 4-8     coping with heart failure
Butch C 4-8     coming to terms and more
Lane's 4-8 reply to Hal's 4-6     weight, Coreg, doctors, drugs
Sheryl C's 4-8 reply to Tom S' 4-6     diabetes, Coreg, obesity
Andy P 4-9     please explain this coughing
Lisa R 4-9     seek Betapace experiences
Lisa R 4-9     diabetes and Coreg
Kate's 4-9 reply to Jack D's 4-7     chocolate deficiency
Jon's 4-9 reply to Kate's 4-9     Barney Clark and the Chinese
Kate 4-9     heart arrhythmia article link
Valerie R's 4-9 reply to Eileen's 4-6     being cold a lot
Dan 4-9     workout and groin pain questions
Janet's 4-10 reply to Andy P's 4-9     ACE inhibitor cough
Tom S 4-10     spam is a pain
David Wilson 4-10     ACE inhibitor side effects
Hal 4-12     how much food is needed with meds?
Robert 4-12     seek CHF doc in New York City
Steve 4-12     is anyone else doing well with CHF?
Chelsie 4-12     rheumatic heart disease at age 14
Diane 4-12     passing out and driver's licensing
Jon's 4-12 reply to Diane's 4-12     passing out and driver's licensing
Alexandra 4-12     pacer made me so much better!
Hope M's 4-12 reply to David's 4-10     ACE inhibitor side effects
Sheryl C's 4-12 reply to Lisa R's 4-9     diabetes experience
Kim's 4-13 reply to Hal's 4-6     Coreg experience
Diane's 4-13 reply to Jon's 4-12     passing out and driving
Claudia S' 4-13 reply to Steve's 4-12     heart failure success story
Roger's 4-13 reply to Alexandra's 4-12     positive attitude helps
Roger 4-13     keeping sodium intake low
Roger's 4-13 reply to Diane's 4-12     driving and blood sugar
Jon 4-14     the chat room is back
Jack D's 4-14 reply to Roger's 4-13     sodium intake too low
Elizabeth 4-14     to Chelsie and Steve
Georgene 4-14     getting better, then worse - lessons learned
Wayne's 4-14 reply to Claudia S' 4-13     similar experience, do you still take meds?
Gene 4-14     seek CHF doc in northern San Diego County
Myrtle C's 4-15 reply to Jack D's 4-7     and about neurontin
Myrtle C's 4-15 reply to Tom S' 4-10     spam and e-mail addresses
Myrtle C's 4-15 reply to Andy P's 4-9     online resources, coughing
Chelsie 4-15     will I always be this tired?
Jon's 4-15 reply to Chelsie's 4-15     leaky valves make you tired
Claudia S' 4-15 reply to Wayne's 4-14     CPAP success story, meds
Roger's 4-15 reply to Jack D's 4-14     keeping sodium intake very low
Roger 4-15     intro, some background
Roger 4-15     thanks for site to everyone

Jon, April 6, 2004 - Hi everyone, I am sort of back. It will take me a long time to catch up on my e-mail though. This was the worst time I have ever had with the flu, ever. On another note, my SSD review is underway beginning the end of the month so I'll let you know how it goes. As soon as I am caught up on e-mail, I will set up the new chat room, which I now have. Jon.

Kate's April 6 reply to Myrtle C's March 29, 2004 - Hi, Your post about things showing up post-trial in "real people" put me in mind of a recent article I read on cancer research in America. The author noted that our research facilities have cured millions of mice, but very few humans. Even so, we keep on studying mice. It also pointed out that we have spent billions of dollars studying little bits and pieces to do with cancer but barely a buck on the process of metastasis, which is what kills people. I suspect the same nonsense takes place with heart research.
     I remember one of my docs saying that places like China make so many break throughs because they are forced to rely on common sense and not just dollar bills. I think every research lab should come equipped with a "normal" person to make sure common sense is in the room. Kate.
Jon's note: That is an excellent idea. I work cheap!  <g>

Kay, April 6, 2004 - Hi, I just found this forum and want to say thanks to Jon for making it possible. I wish I had a magic wand that would make us all well (sigh) but I'm not the fairy godmother, unfortunately. Please keep me in your thoughts as I go in hospital 3/31/04 for ICD implantation. Good luck to us all!
Jon's note: The dates are correct - I am catching up on posts that arrived while I was sick.

Robert's April 6 reply to Myrtle C's March 29, 2004 - Hi, Here in New York City, pharmacologists have found that seizure meds as topomac, neurontin, and depakote can spike blood pressure if mixed with an SSRI med, mainly used with an MOA inhibitor or TCA. Of course, everyone is different. Around here, they don't seem to like neurontin also because it may cause serious depression.

Ron, April 6, 2004 - Hi, Among the other medical problems that I have, I suffered from severe lower back arthritis and claudication. My normal therapy for the back problem was stretching exercises before I got out of bed, a 3-minute shower massage before work, an hour with a heating pad after work and a metal enforce back brace with the pain got bad (about 2 days a month). On 3 occasions the back pain was so bad the only way I could walk was with the aid of a walker. The back doctor told me if I didn't have an office job he would have put me on permanent disability.
     A friend told me about a glucosamine and chondroitin complex plus MSM product. After about two months of 1500mg with my evening meal I began to get relief. I haven't had to use the walker or the back brace in over 2 years. I still continue the stretching exercises and the shower massage but the heating pad usage has dwindled to about once a week.
     My leg pain at one time was so bad I couldn't walk more than 100 feet without having to rest to relieve the pain in my calves. I began drinking at least 8 oz of grape juice per day. Again it took the grape juice about 2 months to ease the pain. I can't run a marathon but I no longer have to limit myself to only going somewhere where there is a resting facility. I hope this helps.

Tom, April 6, 2004 - Hi, I have a CHF which is class one. I do not usually feel the symptoms lately except when I tire myself with an all-day activity. I used to get very confused and tired all the time before I started using Coreg. My blood pressure was 140/95 with heart rate of 100 when I was first diagnosed with this. I use 10mg lisinopril and (gradually increased) Coreg to 12.5mg twice a day.
     My current blood pressure is 110/70 with heart rate of 75 and very steady, meaning I can measure every day and will get the same result. My doctor believes that I should not increase my Coreg to 25mg twice a day (recommended dosage) because I am doing very well in terms of my blood pressure, heart rate, and overall response to the medication. Is this true? Can somone tell me if I should insist to go the regular dosage? Thanks for your help.

Eileen, April 6, 2004 - Hi, I just have some experiences that I would like to have confirmed by others. When taking Coreg, Zestril, Inspra, and Coumadin, does anyone get cold all the time? What is an alternative to help with insomnia? I used to love the cold weather but now cannot tolerate it and my extremities are always chilled. I hope you are all haveing a good day. Love to all.

Michele, April 6, 2004 - Hi, I've been reading all the posts trying to educate myself about my diastolic dysfunction diagnosis. The hair loss posts caught my eye and I thought I would comment because I've experienced hair loss (due to chemo) and regrowth due to Nioxin.
     When the loss became quite noticeable I bought Nioxin Shampoo, Scalp Therapy, and Bionutrient Therapy. It did take 3 to 4 months, but my hair came back. It's not inexpensive, but I wouldn't use anything else now that I've had regrowth that seems to be staying for good.
     The last two months I've used the Shampoo only, every other day, and have not experienced excessive loss, so I'll stick with that due to the expense unless I notice the thinning again. I hope this helps someone.

Janet's April 6 reply to Myrtle C's March 29, 2004 - Hi Myrtle, I just wanted to jump in with a comment on the topic. In the book Ultraprevention a new field is discussed called pharmacogenomics that essentially would match your genetics and metabolism with various drugs. It's the idea that one size doesn't fit all and pharmaceuticals will cater more towards individual needs - a very interesting concept. Personally, I could never get to a target dose of Coreg, my body just wouldn't cooperate for whatever reason.
     Second, I wanted to comment on drug testing. I'd have to think that a person in a drug study taking other drugs would contaminate the data. How would they know which one was causing side effects, you know? That puts all of us in the human guinea pig category, doesn't it? Another thing to consider with drug testing is that women in their childbearing years are not well represented in drug studies. So you are pretty much talking about all women under 50! I believe it is due to liability and risk with someone getting pregnant during the study.
     Last but not least, it's probably obvious by now that I have a real slant towards natural and holistic health. Many people say they are not tested and that is true in a lot of cases but also realize that drug companies cannot patent natural substances. Since drug companies do the majority of these studies, they really have no vested interest in natural substances. My philosophy is to start with the most non-toxic substance and work my way up until I find something that is effective. I'm really not into mega-doses and you do have to be careful with things like herbs and deal with reputable companies. Janet.
Jon's note: We want real people represented in trials and that's why they now use a new drug in trials on top of current standard therapy - that's how real people will be taking it.  <g>

Jill S' April 6 reply to Myrtle C's March 29, 2004 - Hi Myrtle, I was given Neurontin by a physical rehab doctor for impingement syndrome in my shoulder. One of the side effects is ankle swelling. It is also very fatiguing. I can't believe it's supposed to help CHFers who are tired! I didn't get much relief and stopped after a month. Good luck.

Hal, April 6, 2004 - Happy Springtime Everyone, The flowers and all this blue sky help my attitude greatly and it needs help, believe me. After sampling the poor folks medical care here in Alameda county for 3 years, I've found that I could use something better, way better. I need some info regarding alternative treatment for CHF, something beyond more drugs and 12 differant doctors that all shrug at my questions. I've been lied to, misplaced, mismanaged, and abused. It in no way can be called a good situation.
     I take 50mg Coreg a day. The story is that it helps me. I've gained 55 lbs in 22 months and am thirsty constantly. For thirst, I drink. I may be a little slow but just how does looking pregnant and drinking bottled water all day "help" a CHF patient?
     My cardiologist is mystified at the weight gain. Weight gain is listed as a side effect everywhere, and shortness of breath also. I mention these things to my doc and he shrugs and says to exercise and eat less. I just tried mowing my back lawn and had to rest and catch my breath 2 times before I finished. I've had it with these people, had it. All this dope is doing is making me feel lousy 24/7.
     Please folks, forward me any info on treatments that aren't ridiculous and aren't drugs. Also, I would like to hear from folks that have cut their Coreg intake or stopped it altogether. Thanks so much. Be well. Hal.

Eileen, April 6, 2004 - Hi, Has anyone with CHF had Human Growth Hormone injections and if so, did they help? What is the difference between HGH and RGH? Thanks, Eileen.

Jon's April 6 reply to Eileen's April 6, 2004 - Hi Eileen, You can't buy "natural" human HGH. GH from animals like cows and pigs doesn't work in people. It used to be taken from dead people and that was the only source. That was stopped when some patients taking it died from a disease that came from the pituitary glands of the cadavers used. Recombinant DNA technology synthesizes HGH, thus the name rHGH. Some insulin and streptokinase are also recombinant DNA products.
     Human growth hormone actually doesn't just appear and do the trick. GH binds to receptors on the surface of liver cells, which causes them to release insulin-like growth factor-1 or IGF-1. This promotes bone growth and other effects.
     What all those supplements that claim to "be" HGH are really supposed to do is simulate the effects of growth hormone releasing hormone or GHRH, which "naturally" comes from your own hypothalamus. It causes your pituitary gland to release HGH.
     I have no idea if they work but I know one thing that does - exercise. Nothing causes such a release of HGH as resistance training, except for real rHGH injections. How do you think that muscle grows? ;-) This extra HGH also improves sleep patterns in middle-aged men, which in turn further increases HGH production. I don't know if the sleep benefit occurs in any other group. Jon.

Mike, April 6, 2004 - Hi, Last week I was diagnosed with IDCM with an EF of 12% and a left bundle branch block. I had an ICD implanted for cardiac resynchronization therapy (CRT). This comes as a total surprise because I have not exhibited CHF symptoms other than being tired at the end of the day. Will CRT reverse the heart enlargement and improve the EF? My doctor told me not to be concerned about the low EF but from what I have read, it seems serious. Is that true or is he trying to help me remain calm?
Jon's note: If you meet the criteria it will probably help, if you don't it might or might not. See the pacemakers page for patient selection criteria.

Andy P, April 6, 2004 - Hi, I'm now 3 months post-diagnosis and yesterday sought a second opinion at the University of Washington Heart Center. After nearly 6 hours of testing, I met with a cardiologist who specialized in cardiomyopathy. In addition to all the meds listed on this site, he recommended adding statins to the mix at 10mg (not to be increased) of pravastatin. My cholesterol is already extremely low and I've read contradictory things about the use of these drugs on CHF patients. He cited several clinical trials indicating positive results when using small doses. Does anyone have any experience or thoughts on the use of these drugs, especially in patients with no cholesterol issues?
     Also, I'm 2 days post-angiogram (cath) and am still experiencing some localized pain at the incision point. Any ideas how long this lasts and when to get begin to get concerned?

Alexandra, April 6, 2004 - ( Jon's Note - This came in 3/31 ) Hi, I had my surgery yesterday morning. Now I have a biventricular pacer that will hopefully help with the pumping function and keep my CHF in check. I was so scared of this one. I really thought I was never going to come out of it. It was a weird feeling, I can't explain it. I just kept thinking, "How many times do I get? Is this my time? I couldn't have possibly done everything I need to do here."
     There is this prayer circle of nuns that my father knows and he always asks them to pray for me when I get surgery. They did it with my last pacer and that was fine. My sister had a miscarriage last year and developed an inoperable tumor in her uterus. They were going to start chemo and everything. Her last visit for an ultrasound before chemo showed no tumor. The doctor literally said he could not explain it. Those nuns were praying for her too. They were praying for me too this time. The hospital is an hour away. I had no idea where these nuns convent was. My room directly faced their convent. My dad said that was the one. I was crying I was so happy. It was so ironic.
     I try to explain to my sisters (who cannot have a conversation without making fun of something) you can't possibly believe that all this is medicine, technology and science? There has to be some divine intervention. They blow me off and tell me that I am too intense. Tough. There is no way that I am alive today by medicine alone.
     I felt great in the hospital. I was walking into the bathroom an hour after surgery. I wanted to put my own pajamas on and the one nurse told me no, it's easier in the gown. For who? She left the room and I put them on anyway. I slept wonderfully. I am very sore today, but I feel good. The doc said the true test will be over the next few weeks to see if my SOB and fatigue get easier. He showed me the pics of where the third lead is placed and I am just amazed how he did that. I saw my CHF specialist in the prep area and he waved to me - he's great.
     I am relieved it is over and so glad to be home with my son and husband. I was just thanking God and my mom for looking out for me. Thank you to everyone who prayed for me. I have to rest for a week, no driving, and then no lifting over 15 lbs or lifting my right arm over my head for 4 weeks. I will keep everyone updated as I hopefully get better. Thank you again for all the support I have received and I will write soon.

Barb's April 7 reply to Hal's April 6, 2004 - Hi Hal, I'm a long-time lurker but had to reply to this one. Did your cardiologist suggest that you get your blood sugar tested? Extreme thirst is often a tip-off to diabetes. Both beta-blockers (including Coreg) and weight gain add to risk of diabetes.

Jack D's April 7 reply to Myrtle C's March 29, 2004 - Hi, Maybe you should try to find a different quack to dispense your medications. The title "psychopharmacologist" is not something that is earned by going to school. It is a self-applied ego stroke. I know that you and many people who deem fit to waste money on "doctors" with extra designations will refuse to believe such a thing, but here is a little verification for the others who might be led astray:
The definition of psychopharmacology is: "The branch of pharmacology that deals with the study of the actions, effects, and development of psychoactive drugs." Psychiatrists who attach the title to their name may believe that they are a psychopharmacologist because they happen to prescribe these types of drugs but the stuff he told you about neurontin is typical psycho mumbo jumbo.

Jack D's April 7 reply to Kate's March 29, 2004 - Hi, Places like China are able to have significant breakthroughs more easily because they don't have the legal or moral restraints that the rest of the world has. China places little value on human life so they don't really care how many people die during their experimentation as long as they get it right in the long run.

Jack D's April 7 reply to Jill S' March 29, 2004 - Good response, Jill. You may have noticed that the recommendation came from a psychiatrist with a bogus title attached to his name. I guess you would need a whole flock of psychiatrists to figure out exactly why you would have a psychiatrist prescribe medication for CHF. Neurontin is an anti-seizure med and can be used to relieve chronic pain because it blocks nerve signals. I was on massive doses of it for a long time but weaned myself off it and feel a whole lot better now. Come to think of it, my waterlogged lower legs are normal now. I don't have to wear extremely tight compression stockings.

Tom S, April 7, 2004 - Hi, I have been monitoring this forum for some time and I am quite impressed by the sincerity and honesty I see. I commend Jon for this wonderful web site and I commend you all for the help you have given others.
     A little about myself: I was diagnosed last July with CHF. Well, actually I diagnosed myself. The doctors confirmed my diagnosis a week later. I have LV enlargement with a calculated ejection fraction of around 30 to 35%. I also have left atrial enlargement, global hypokinesis probably compatible with dilated cardiomyopathy, aortic sclerosis, mitral annular calcification, mild mitral regurgitation, and mild tricuspid regurgitation.
     Currently I am taking 0.25mg digitek, 20mg accupril, 50mg spironolactone, 80mg furosemide, and 6.25mg Coreg. In the three months following my diagnosis I lost close to 85 pounds. I currently weigh approximately 100 pounds less than I did last July. I have changed my total life style and eating habits. Like many of you, I have my good days and bad days. I could go on, but you've heard all of this before.
     We basically have the same symptoms, but I also have one I have not heard discussed before. The bottoms of my feet are numb. I have no feeling on the bottoms of my feet. I actually shouldn't say none. The only time I feel something is when I step on a sharp rock barefooted. Has anyone else experienced this condition? Is there anything that can be done or do I accept it like I have accepted various other medical conditions? Thank you.

Janet's April 7 reply to Eileen's April 6, 2004 - Hi Eileen, Replying to the question about Human Growth Hormone. I totally agree with Jon that the best natural solution is strength training/resistance exercising. I want to add that from what I've read, the peak hormone release actually occurs 15 to 30 minutes after the exercise and if you have a high level of insulin in the bloodstream, less HGH will be released. The bottom line is that you can undo the hormonal benefits by doing things like having a sugary sports drink directly after exercising. I personally believe that strength training is part of the "fountain of youth" and HGH is part of that. :-)

Janet's April 7 reply to Hal's April 6, 2004 - Hi Hal, You mentioned a few things in your post that threw up a red flag for me: Weight gain, thirsty, looking pregnant. You may want to look into insulin resistance if you have any other risk factors. Some of these would be a waist measurement greater than 40 inches for a man and 35 inches for a women. Usually triglycerides are high and HDL is low. Fasting blood sugar is often pre-diabetic (100 to 130 range). Insulin resistance can increase your weight a lot and make you feel pretty miserable.
     Now on the alternative therapy, if you want to hook up with a professional, see a naturopath. You can find one in your area at the web site You'll also need to find out if your insurance will cover a naturopath. Some do, some don't. Naturopaths will approach you in a holistic manner and not just as a collection of parts. I completely understand your frustration with doctors and drugs.
     In general, I think the place to start in any healing process is by really pay attention to the fundamentals, then work your way up. This means if you were perfectly healthy, what would you need to do to stay there? This would include good nutrition, vitamin supplements, omega oils, exercise, plenty of water, hormone balance, etc. If you try to build your house on sand, it just doesn't work. Once you have the basics down, then you start looking for ways to treat the symptoms and figuring out which symptoms are drug side effects and which ones are yours. Best of luck to you!

Dwight, April 8, 2004 - Hello all, I'm a 46 soon to be 47 year old male who is 2 years into CHF. My CHF is due to blockages. I have had stents, balloons and bypasses but all of them failed and I am now inoperable. I am on the transplant list and I agree with George that exercise is a great help. It does force the blood to find new ways to the heart in the form of new smaller vessels and without these I probably would not be sitting here typing this.
     My blockages were all at least 95 to 100%, mostly 100%, and I was born without the artery in the back of the heart. My surgeon tried TMR but to no avail so my heart isn't getting hardly any blood flow. I went on a diet of low-fat low-calorie foods and hardly any sodium. In 7 weeks I lost 19 lbs and now I'm at a leveling stage. This is where the weight begins to come off very slowly so if you are or have experienced this, don't give up or get down. This is normal.
     The body has a lot of fluid to lose even in the weight that is coming off so that is the reason you lose so fast in the beginning. Just don't give up. Ask your cardiologist if light exercise is right for you. I found out by accident that it was okay for me. After not being able to complete rehab for my heart in 2001, I thought I couldn't exercise till I had my transplant evaluation 3 months ago. I had to ride a bike while having a pulmonary test, so I asked my doctor if it was okay to do this at home and he told me yes, and that it might even help create better blood flow. I feel a lot better, have more energy and yes, it really helps with the diet.
     I know this is long but I just wanted you to know that you should never give up and that when you find the right team of doctors along with a social worker and nutritionist, living with CHF can be done. Quality of life can be improved, at least in most cases. Anyone wanting to e-mail me, feel free to do so.

Butch C, April 8, 2004 - Hi, I have to admit, I have been a reader only until today for some time, maybe 2-1/2 years. I was diagnosed 4 years ago, spent about 3-1/2 in denial. Today is my first post and I'm not certain why. Possibly, it's nothing more than a need to confess my sin of stupidity (denial) or possibly to have someone else to discuss this problem. Whatever, I am here.
     This past January, I was moved in heart failure classification. I gave up working for a living 6 months ago. I just couldn't do it anymore. With that decision, denial faded quickly. I was fortunate that I could retire early and had finances in order. I'm 56 years old and this has been a difficult illness for me to deal with, but physically I have been forced to come to terms.
     I appreciate many of the folks who have posted here over time, as I have silently read, reread and learned that my situation is most real. I have been through great time frames of guilt, making excuses for being tired all the time, and the physical body pains that seems to erupt from time to time. So maybe I posted today, as I felt the need to give something back from what I have taken from so many of you.

Lane's April 8 reply to Hal's April 6, 2004 - Hi Hal, I weighed 165 when I started Coreg and then when I got to 12.5mg twice daily, I had an initial weight gain of about 5 lbs. My doctor added Lasix and potassium to my daily cocktail, and we have held the weight. The pregnant look and thirst aren't normal, as you well know.
     You don't want to hear it but fire your doctor, again. Get with one that listens to you and holds your concerns as your own. Also get your blood glucose checked. I have my electrolytes and all that checked at least monthly. Take no chances. Be proactive in your health, nobody else is. I almost died due to ignorant doctors and nurses in the first hospital I went to.
     Oh, the Coreg is a keeper for most people. When your docs add meds, research the interactions and side effects yourself. They don't always know all of them. I constantly surprise my PCP and cardiologist when I know the side effects of new meds when they start them in the hospital. I have been in and out way too much the last year. Take care. E-mail me if you have questions.

Sheryl C's April 8 reply to Tom S' April 7, 2004 - Hi Tom, This sounds like neuropathy to me. Have you been tested for diabetes? This is turning into the CHF/Diabetes forum. They go hand in hand so talk it over with your doc. Have him do an A1C test which gives a 3-month average of blood glucose levels. You don't have to be overweight to have diabetes. I was diagnosed after I went on Coreg. Sheryl C.

Andy P, April 9, 2004 - Hi, Coughing at night - can anyone explain it to me? Coughing at night was the symptom that first got me to visit my doctor and led to my CHF diagnosis. Since then, I haven't had a single episode of it until the last few days. I've weighed myself regularly and show no weight gain in the morning, and have watched my sodium closely. Can someone clarify what the coughing is, exactly? I am not experiencing SOB at night, just a tickling cough in the back of my throat (dry). Also, does this indicate a worsening of symptoms? Thanks to anyone who can clear this up for me, it's really gotten me down since I felt I was doing better.

Lisa R, April 9, 2004 - Hi, I finally got my much needed yearly evaluation (after 2-1/2 years). The good news is that my EF is extraordinarily good, at 60% up from 27% at diagnosis. The bad new is that my holtor monitor revealed some V-tach and very frequent PVCs. The doc says the PVCs aren't so bad in and of themselves but mine are present in high numbers around the clock and he doesn't like the appearance of the V-tach. Anyway, he wants to put me on Betapace. You have to go into the hospital to be monitored for the first few days. Does anyone have any experiences with this drug? Thanks.

Lisa R, April 9, 2004 - Hi, I was browsing over some recent posts regarding diabetes. I had gestational diabetes, and diabetes runs in my family. I am currently balancing on the edge of diabetes and I am sure the Coreg doesn't help. I think it is very possible for those with a predisposition for diabetes to be significantly impacted if they take Coreg. I am not overweight in the least.

Kate's April 9 reply to Jack D's April 7, 2004 - My goodness Jack, After reading your posts may I say I recognize all the symptoms of insufficient chocolate consumption. The subtle undertone of hostility and the attitude that we are all somehow nitwits leads me to this most basic diagnosis. I am not now, nor have I ever been a physician, but as a woman I profess a strong knowledge of the negative impact on the psyche that accompanies eating too little chocolate.
     For the record, my cardiologist is Chinese, as is my electrophysiologist and for that matter, my dentist. My cardiologist and I have had long discussions about the Chinese approach to medicine. I saw a recent special on PBS about Alzheimer's disease. I came in late to the program and they were showing footage of lab experiments. I assumed it was taken in China because all the people in the lab looked Chinese. Strangely enough it was Pittsburg, Pennsylvania. They are a highly educated, highly disciplined, highly motivated people. The breakthrough my world-reknowned hematologist was referring to was in the use of vitamin A in treating AML. Yes, they do use humans and we need to do a lot more of the same. Barney Clark is a name we all remember, but there have been tens of thousands of Americans who have subjected themselves to experimentation. It is not unique to the Chinese. I hope someone puts a giant chocolate rabbit in your basket this Sunday. Trust me, it works wonders. Kate.

Jon's April 9 reply to Kate's April 9, 2004 - Hi Kate, Just for the record, Do you remember why Barney Clark was so well remembered? It is because he suffered so much in his 112-day survival after implant that artificial heart development was put on hold for many, many years. It's how you use people in trials that Jack was referring to, not their use itself.
     I would guess there are as many ignorant or lazy Chinese people per 1000 as in any other race. People are people the world over. Besides, if they were in Pittsburgh, weren't they probably Americans, not Chinese? ;-) Jon.

Kate, April 9, 2004 - Hi, I found an interesting piece, curing those mice again, but let's hope it really does work with humans. See

Valerie R's April 9 reply to Eileen's April 6, 2004 - Hi, I take many, many medicines, including Coumadin (warfarin) and cholesterol-lowering Pravochol. The cold only recently started to bother me and I don't mean just a little! I have five digital thermometers in the house that measure temperature and humidity; so many because I was using some at work and just retired. Anyway, it can be 78 degrees F and I'm freezing! Thankfully, I live in Florida but the humidity bothers me sometimes too. I turn the air up during the day and make it cooler at bed time.
     I recently learned this is also a symptom of underactive thyroid, which I have from one of my medicines called amiodarone (Cordarone). So is weight gain and that's been happening as well. I have been on synthroid for 3 weeks now but the endocrinologist says he has to work slowly because of all my meds.
     I am learning to cope. I go nowhere without a sweater or jacket. Lately Macy's has been freezing. I think they are trying to sell their winter clothes in Florida. I wear shorts and a jacket to the grocery store.

Dan, April 9, 2004 - Hi, I am a 39 year old with CHF and a dual chamber pacemaker. I have 2 questions. Can I use an ultimate gym or heavy bag for working out or will these activities damage the pacemaker wires? The second question involves groin pain when I stand or walk for extended periods of time such as 45 minutes to one hour. Has anyone else experienced this? Thank you, Dan.

Janey's April 10 reply to Andy P's April 9, 2004 - Hi Andy, Watch out for the notorious ACE inhibitor dry cough. I coughed for about 6 months before they took me off lisinipril. I noticed it was always worse at night. Also, since it's spring, you may have some issues with tree or grass pollen causing sinus drainage at night. Try propping up on a few pillows and if that doesn't help, talk to you doctor about ACE inhibitor side effects.

Tom S, April 10, 2004 - Hi, A few months ago I set up several e-mail boxes on a free e-mail service called Muchomail. Prior to that I had an e-mail box that got overloaded with spam so I figured I would devote one just to the CHF web site. At that point I was getting upwards of 170 unsolicited spam mails a day for everything, the full monty of spam.
     I am disappointed to say that I have had the muchomail accounts less than a year and already the one devoted to this CHF forum has attracted so much spam that I can no longer tell the legitimate inquiries and notes from the people on this forum, and has taken an added dimension of housing virus or e-mail worms included in the spam messages. Needless to say, the muchomail account is now useless.
     I mention this to tell the people who have been writing me that because I cannot tell the good e-mails from the bad anymore, I have had to dump all messages that are in that account on a daily basis. Today, in one day alone, there were 55 e-mails and I would suppose the vast majority were spam.
     I will be setting up another e-mail address soon but I suspect that will be overtaken by spammers who graze web sites like this superior site for e-mail addresses. I wish there was another way to handle the e-mail addresses so they were not visible to spam bots seeking them out.
Jon's note: Try dealing with a web master's spam load  <g>

David Wilson, April 10, 2004 - Hi, I have a dry cough too. I think it is caused by my ACE inhibiter, lisinopril. I have cut my dosage down to 5mg and I think I am going to stop taking it altogether. My blood pressure also gets too low and Wednesday night I passed out and hurt myself. I am sore now.
     I think the ACE inhibitor is giving me too many side effects now. I stopped it for a month after my gastric bypass surgery and felt great. Since I have been back on it, I feel lousy. I think there is a connection. I did go to the doc and she gave me some cough pearls that help a lot. They look like a vitamin E pill. I have lost 90 pounds so far and thought I would feel great but I don't. I will check with my cardiologist next month but for now, no more lisinopril for me. I will see if I feel better.

Hal, April 12, 2004 - Hey Gang, Thanks for the advice from a few of you kind souls. I shall get a test for diabetes very soon. Fact of the matter is I don't have the money for a new ailment. I guess I'll ignore it.
     My question today is, what is the minimum amount of food required while taking meds? My family has been helping me by feeding me. This will end very soon. Is there somewhere a specific quantity of food to take with meds? Having money for food is going to be tricky. Two apples? Small salad? What? Be good. Stay well.

Robert, April 12, 2004 - Hi, I am seeking a CHF specialist in the metro New York City area.

Steve, April 12, 2004 - Hi, Sometimes as I read "The Beat" I wish we heard more from those doing well with CHF. I have gone through a lot in the 7 months since my hospitalization, but am happy to report that I am better today. My EF is still a lousy 20%, but my heart is providing what I need to lead a somewhat normal life. My CHF doc has taken me off many of the drugs we talk about and reduced others. I feel much better. It is a known fact that the side affects of our therapy can be as limiting as the condition. Keep the faith and follow your doc's instructions. It pays!

Chelsie, April 12, 2004 - Hi, I am 14 years old and I just recently found out that I have Rheumatic Heart Disease. It's still hard to believe that this is happening to me, because I showed no symptoms. It is really hard to cope with the fact that this has happened to me. Does anyone have any ideas on how to cope with this? Thanks so much! Chelsie.

Diane, April 12, 2004 - Hello to everyone, I am from Massachussetts. I have DCM, asthma and type 2 diabetes. My concern right now is that my license renewal is coming up. How have you dealt with this problem? I have not had any blackouts behind the wheel. If I feel out of sorts, I pull over or don't drive that day. My license is is what is keeping me sane.

Jon's April 12 reply to Diane's April 12, 2004 - Hi Diane, I assume you are talking about blackouts from your heart condition and that you have an ICD. If you black out from your heart problems and do not have an ICD, I would strongly suggest changing cardiologists immediately. With this sort of problem, usually you are not considered safe to drive until you have gone 6 months without passing out, whether it's behind the wheel or not. If it is your diabetes causing you to black out, you need to get it under control before doing any driving. Killing someone is going to affect your sanity in a worse way than not driving. Jon.

Alexandra, April 12, 2004 - Hello everyone, I am 12 days post-op from my CRT pacer implant. I never imagined it would have this effect on me. I have so much more energy. I walk the stairs now without stopping 2 to 3 times. My family has even said that I am much more different than before.
     I am so grateful for this device and for all the help that I have received on this web site. I have met so many people who understand all my physical and emotional feelings. I am going slowly but there is a substantial difference in my life. I am still following the low-sodium diet and fluid restrictions, and take all 9 of my meds multiple times daily. I cannot exercise or lift anything over 15 lbs for another 2 weeks, which makes me feel badly for my 3 year old, who is 34 lbs.
     My CHF and pacer specialists both told me that with this device 1/3 of patients have no change, 1/3 say they feel okay, but their tests show marked improvement. This may be due to attitude. The more positive you are, the better you may get. About 1/3 of patiens feel better almost immediately.
     I thank God and my mom, who is watching over me, that I am in this 1/3 of patients. I went to the park with my son and husband yesterday. I was walking up small hills and playing a little on the playground with my son. I was almost crying. I had my cell phone and I wanted to tell someone in my family how great I felt, but no one was home! I would never be able to do that before. I am just so happy and now I have new hope that if one day this device doesn't work any longer, that there will be another device or procedure that will help me.
     Sometimes I feel guilty about telling everyone that I am doing so well, but I want people to know that there is hope and if you follow your doctor's orders, it can work for you. I am almost done reading Success With Heart Failure and it is very imformative. Keep your spirts up and have a positive attitude, it really works wonders.
     I am so glad I didn't slip into a deep depression, which is so easy to do. Anyone who wants to talk or just vent to me, I am always here to listen. Thank you all so much for helping me through this and I wish all of you can have an outcome like mine.

Hope M's April 12 reply to David's April 10, 2004 - Hi, I tried a number of different ACE inhibitors, including ARBs like Cozaar and something else I don't remember. Each of them gave me such undesirable side effects such as cough, feeling feverish without a fever, feeling like I had the flu, dizziness, etc,..., that the doctor finally said I could just stick with the beta-blocker. I had trouble with Coreg so I take Toprol-XL, with good results. I also take Coumadin, digoxin, and dyazide. Hope.

Sheryl C's April 12 reply to Lisa R's April 9, 2004 - Hi Lisa, I was diagnosed with diabetes after I had been on Coreg. I may have had the disease for years but was active and watched my diet so I was unknowingly taking care of my high glucose levels by using it up with activities. After starting Coreg and with my decreased activity due to CHF, I began to have symptoms of diabetes.
     You can be down right thin and still have the disease, so have all elevated fasting blood glucose levels followed up with an A1C. Sheryl C.

Jack D's April 7 reply to Andy P's April 6, 2004 - Hi, Some of the latest studies on statins have shown that they are beneficial to CHFers who don't have cholesterol problems.

Kim's April 13 reply to Hal's April 6, 2004 - Hi Hal, I felt lousy on Coreg and I never got over 12.5mg per day, then went down to 6mg and then it was stopped. Shortness of breath and weight gain can be side effects of Coreg. Although it is a lifesaver for many people, my blood pressure was too low so we stopped it. I then went through 6 weeks of withdrawal symptoms. You can't just stop taking it but must reduce dose slowly.
     I would suggest trying to find another doctor - someone to evaluate all your meds and then formulate a plan to help you feel better. Hang in there, there are options.

Diane's April 13 reply to Jon's April 12, 2004 - Hi, I do not have an ICD and my meds seem to be working well for me. My first episode was 7 years ago I blacked out. That was when I was diagnosed with DCM, asthma, and anxiety attacks. My diabetes is under control with meds and diet. I am very aware of the responsibility getting behind the wheel. You're right, it would be worse if I hurt anyone. I will have a heart to heart with the cardiologist soon. Thanks for your comments and for this site.
Jon's note: Do they know why you passed out and when was the last time it happened? Losing consciousness is very serious and should be thoroughly evaluated and treated, for your sake, driving or not.

Claudia S' April 13 reply to Steve's April 12, 2004 - Hi Steve, You said you wanted to hear from people that are doing well: I am doing very well and wanted to let you know there is always hope. Five years out things are looking good and I am here to enjoy my grandson and new grandbaby on the way. It's a far cry from nearly being put on the heart transplant list.
     I have CHF, cardiomyopathy, type 2 diabetes, asthma, hypothyroidism, high blood pressure, and recently high cholesterol. I was diagnosed 5 years ago after a long struggle to get the correct diagnosis. My ejection fraction was 15%, my heart was huge and barely working. I was put on all the typical meds including Coreg, spironolactone, Avapro, Coumadin, Lasix and K-dur but I never use the last 2 anymore.
     One year after diagnosis my EF rose to 25%, then a year later to 30%. Doctors wanted more of an improvement. My husband suggested a sleep study. They found that when I slept my oxygen levels dropped to 78%, so I was put on a CPAP machine and that was an answer to my prayers. My EF is now 60% and the doctors are even amazed. My pulmonologist said that it is being discussed in the medical field that a good many CHF patients might benefit from a sleep study.
     I cannot believe the energy I have. I had told the doctors I had not been sick prior to the CHF diagnosis, but they insisted it was idiopathic and in the end it wasn't! I argued this often and in the end I was right, following my gut feelings and kept looking for answers. My heart today is normal size and function. This board is wonderful, and full of such great information. I hope everyone is having some good days, and God bless. Claudia S.

Roger's April 13 reply to Alexandra's April 12, 2004 - Hi, It sounds like you're doing great! I'm positive that a good attitude works wonders, that along with prayer and a good support team.

Roger, April 13, 2004 - Hi, I don't know how low any of you go on sodium per day, but I'm at about 300mg a day or I gain weight. One thing I've found is to substitute infant formula for my milk for cereal in the morning. What I use is 22mg sodium compared to 130mg for milk. Every little thing helps!

Roger's April 13 reply to Diane's April 12, 2004 - Hi, If the blackouts are from diabetes, my CDE from the diabetes support group says to never drive if sugar is under 100 points.

Jon, April 14, 2004 - Hi everyone, I finally got the chat room up and running, I think. <g> There will be a chat tomorrow evening at 7:00 PM Central Standard Time. If you need to convert that to a different time zone, see the links near the top of the chat page at
      The chat room is closed until that time, although after a chat session or two, I will probably make it available all the time to anyone who wants to use it. I just have to get used to all the configuration and admin functions that aren't needed with a free chat room, but are required to run this one. This has lots of neat functions that are currently disabled. As I get used to running it, I will enable many of them one at a time, so it should get better as it goes. This was paid for entirely with reader donations, so I hope it proves useful to all for the next year!
     For those interested in such stuff, this does not run on my server. That would require root access, thus a dedicated server for the site, which runs about 1300 dollars US annually! Jon.

Jack D's April 14 reply to Roger's April 13, 2004 - Hi Roger, I'd really like to know what you eat every day to maintain a sodium count of 300mg or less. It doesn't sound possible and even more than that, it doesn't sound healthy. Jack.
Jon's note: 50 to 120mg sodium intake per day is necessary for health, so 300mg should be okay as far as I know. Seriously ill CHFers awaiting transplant are sometimes put on 500mg daily maximum.

Elizabeth, April 14, 2004 - Hi, First, Chelsie, you are on the absolutely correct path. Doing research and asking questions is one of the best things you can do for yourself. This site is a great place to start. Education, knowledge, knowledge and more knowledge will help you cope. There are lots of negative emotions waiting to bite, such as grief, fear, why me; but the unknown and uncertainty will create far more anxiety than the very worst facts and truth. I surely wish you well and hope you post again. I'll look forward to hearing about your progress.
     Steve, you wanted to hear from someone doing well. Let me wave my wand and grant your wish, while shouting thanks be from the very mountaintops. I generally lurk and now would be a good time to say thanks to Jon and all of you for the great information and inspiration.
     My heart attacked in October just in time for my 56th birthday. As an added bonus, they diagnosed me with diabetes. Coreg (3.125 mg BID), Lasix, potassium, aspirin, glucophage, starlix, niacin (statins ate my liver) and a touch of insulin do the trick for me. My echo on admission showed a 25 to 30% EF. In mid-December I was readmitted because I could not digest food. By January, I'd pretty much had it with being infested with pod people and having elephant legs. We got rid of the Avandia for diabetes, added a touch of zaroxolyn, squeezed water from the stone and turned the corner. We did a cath and cardiolite treadmill test that said my EF was 20 to 25% at the end of January.
     Through it all I've been a low-salt zealot and crawled to my stationary bike when I couldn't walk to it. One of the few times I've wept was the day I had to strip the plates off my weights, but strip them I did and went all the way back to the 3 pound rods. I'm now making the rehab treadmill smoke, the aerodyne cry for mercy, the nu-step beg, and I just graduated from water joint work and stretching to starter water aerobics. My mountain bike is in the shop having the new computer installed and I fully expect the cardiologist to "unground" my kayak at the end of this month.
     I didn't get CAD by being an elite athlete - sins lurk in my past - but everything on this site is correct: Good diet, low salt, take the meds, follow the instructions, learn all you can, and exercise, exercise, exercise - low and slow and lots of it. It's working for me and I hope everyone enjoys the same.

Georgene, April 14, 2004 - Hi, I am writing to let ya know a little about myself. I first got sick when I was 21 years old. The doctor thought I had the flu until I went into CHF. Meanwhile they found out that I have dilated cardiomyopathy and I went down for a heart transplant. Everything was okay and I didn't need one then.
     I still continued to not accept it because it didn't seem like it was real. I got married, relocated to another state, and a couple of months went by, then I blacked out due to VT. I received an ICD in 1995, then got it out in 2000. I was very excited about how I was doing so much better.
     So in 2003 I relocated to another state and went through all the same stuff. The doctor said I was completely better and did not even need to see a cardiologist anymore. He said he didn't even consider me a heart patient. That was the happiest day of my life.
     Well, in March of 2004 I was not feeling good. My heart couldn't keep a beat so I went back and she ordered an echo and bad news came. My EF was down to 26% and I went back on a lot of medication. I believe once you have DCM it is controlled only with medicine because once I stopped it all I got worse so now I am back trying to deal with all this again. If it ever happens to you, make sure they do your echo at least every 3 months to make sure nothing is going down. I learned a tough lesson but I know I can get through it again. :-)
Jon's note: One reason they added stages to the heart class system was to remind doctors that once you are a heart failure patient, you are always a CHFer.

Wayne's April 14 reply to Claudia S' April 13, 2004 - Hi, I just wanted to report a similar experience. Although my EF never got as low, I have recovered well enough to lead a fully active life. My last EF measurement was 65% and I go in for another check in June. I credit my recovery almost totally to a CPAP. I know I did not get proper rest or care for my body for 12 to 15 years - now I do.
     My question for you is if you still take all the medications? I do. My cardiologist has suggested that he will never approve that I not take them. I've read all of Jon's and others' advice and believe that they are most likely right. Once the damage is done, it isn't worth the risk of a relapse. It is an internal argument and I pray that all others who have faced this awful disease will recover enough to think of it as a possibility.

Gene, April 14, 2004 - Does anyone know of a CHF specialist in San Diego? I am a new poster here and am looking for a CHF specialist in the northern part of San Diego County. I have seen the list of doctors on this site, but those on the list are all a bit too far south for me. Thanks very much, Gene.

Myrtle C's April 15 reply to Jack D's April 7, 2004 - Hi, Please remember that everyone is different, which is why Jon's Place is so important to us. My doctor is the head of the department at the University of Texas Health Science Center. He did not give himself this title. He knows what he speaks of and is thoughtful and does many papers on depression. I only wish I had a cardiologist with as much knowledge and experience as he does. He does not write for CHF patients, I just repeated what he told me. Neurontin helps me because I often have a high adrenaline (hormone) level that creates fatigue.
     Janet, thanks for the info on pharmacogenomics. I do have problem with many meds and maybe that could be the reason why. Thanks for the info that neurontin can cause fluid retention. I will watch for that. I am on a very low dose.
     Jill, I did not mean to imply that neurontin is a med for all CHF patients. Wishing you better health, Jon! Omie.
Jon's note: Now, my curiousity is aroused - what medical school does give out a degree with that title?

Myrtle C's April 15 reply to Tom S' April 10, 2004 - Hi, I got the address for this message board and it has helped so much. I will send my other address to those who try to correspond, otherwise Yahoo does filter gobs of spam for me. It has a bit more space than Hotmail. Give it a try.

Myrtle C's April 15 reply to Andy P's April 9, 2004 - Hello Andy, Be sure to read The Manual Jon has on this web site. I don't know about your coughing problem. It could be from something else, not even related to the chronic heart failure you have. God speed to your coughing problem, a good night's sleep would be great, I know! Omie.

Chelsie, April 15, 2004 - Hello, I am getting really tired lately. Will I ever not be tired, or will I always be tired now? I go to bed and wake up tired day after day after day. I go to bed at a decent hour and wake up at a pretty good time, but yet I am still tired. Any advice?

Jon's April 15 reply to Chelsie's April 15, 2004 - Hiya Chelsie, With your multiple valve leakage, you are more likely than most to be constantly tired. When you get your valves repaired or replaced, this should hugely reduce that fatigue and take the strain off your heart and other organs.
     My wife has 2+ mitral valve regurgitation and it makes her perpetually tired. She is unwilling to have surgery yet so she just has to be tired. It's a tough decision - the trick is not to put it off so long that your heart muscle is damaged from long-term low output. Jon.

Claudia S' April 15 reply to Wayne's April 14, 2004 - Hi, To answer your question, I do still take all my medications. Going off meds has not come up yet with my doctors. I am for leaving well enough alone and we shall see down the road.
     I am glad to hear someone else is having good results with CPAP. I am so addicted that I will not even nap without the machine. I even have an adapter for the car when we travel long distances. For me, it is a huge difference - when I sleep without the CPAP, I can barely function. Best of luck and God bless.

Roger's April 15 reply to Jack D's April 14, 2004 - Hi Jack, It was hard at first but is now just there. I usually start the day when I get home from third shift with oatmeal and my formula (10mg sodium), sleep 10: AM till 2: PM, then have an apple or sometimes sardines in water at 75mg. I make my own bread, with one mg sodium, from my favorite cookbook: The No Salt-Lowest Sodium. I highly recommend it. When I get my blood checked, the doctor will check my blood sodium and say I'm at 130. The normal low is 136 mEq per liter, but says that for me that's great! I also do a lot of fruits and veggies - fresh or No Salt Added from a can or frozen. I buy no-salt natural peanut butter and a lot of other things that were hard to track down, but I learned where to get them. I also watch carbs because I have type 2 diabetes.

Roger, April 15, 2004 - Hi, I guess I should give a little intro instead of just jumping in! In March of 1989 I had my first heart attack and a triple bypass. In 1999, I was diagnosed with type 2 diabetes (diet and exercise control, average 102 level). In June of 2001 I had 2 more attacks, plus one on the table while getting a double bypass. This is how I ended up with CHF.
     I was out of the hospital 15 days and then went back in to drain 22 lbs of fluid in 4 days, plus they tapped my back 4 times. I am doing great now, praise the Lord! About 4 years ago I was diagnosed with sleep apena. I stopped breathing 45 times per hour. I just had a sleep study in November and I stopped breathing 0 times! I have a bipap machine.
     God has been with me all the way along this path; He is so good! I was only off work for 4-1/2 months. I try to walk 30 to 45 minutes per day.

Roger, April 15, 2004 - Hi Jon, I wish to thank you for this great site - great job! What a testimony you have! Thanks also to everyone on this message board. I'm just sorry I didn't find it earlier on.

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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