The paperwork never ends The Archives
November 1-15, 2005 Archive Index CHFpatients.com

Bill H 11-1     saving money on Coreg
 
Tom S' 11-1 reply to Jim T's 10-30     hearing noise
 
Nancy P's 11-1 reply to Jim T's 10-30     hearing noise
 
Valerie R's 11-1 reply to Joe G's 10-24     generic versus brand-name drugs
 
Anita S 11-1     folic acid questions
 
Jon's 11-1 reply to Anita S' 11-1     folic acid supplements
 
Loren 11-1     questions
 
Jon's 11-1 reply to Loren's 11-1     reduced EF, meds and side effects
 
Loren's 11-1 reply to Valerie R's 10-16     hot bath experience
 
Giorg 11-1     why not do pushups?
 
Jon's 11-1 reply to Giorg's 11-1     pushups & weight training are good things
 
Gene W 11-2     seek similar problems with edema
 
Lisa M 11-2     lots of questions, really need advice
 
Jack D 11-2 11-2     generic versus brand name drug versions
 
Jon's 11-2 reply to Jack D's 11-2     generic versus brand name drug versions
 
Barb N's 11-3 reply to Gene W's 11-2     diabetes, CPAP, diuretic possibilities
 
Tom S 11-3     Medicaid news for US veterans
 
Cheryl C's 11-3 reply to Lisa M's 11-2     also, sour salt, doctor visit & more
 
Cheryl C 11-3     to those living in Florida, USA
 
Joanne R 11-3     vision changes and heart failure
 
Donna V 11-3     generic Coreg?
 
Karen K's 11-4 reply to Lisa M's 11-2     not looking sick & more
 
Tom S 11-4     about Medicaid for US veterans
 
Stephanie H 11-4     making donations the easy way!
 
Shane R 11-4     does anyone know about AC2592 ?
 
Joe B's 11-4 reply to Donna V's 11-3     time line for generic Coreg
 
Roger H's 11-5 reply to Anita S' 11-1     folic acid, flu shots
 
Aubrey C's 11-5 reply to Anita S' 11-1     folic acid, pacer implant
 
Giorg's 11-5 reply to Jon's 11-1     still unsure about resistance training
 
Jon's 11-5 reply to Giorg's 11-5     resistance training
 
Tony M's 11-5 reply to Karen K's 11-4     pain and pain meds
 
Mary Anne M 11-7     seeking potassium in the diet information
 
Peter S' 11-7 reply to Anita S' 11-1     folic acid, B6 supplements
 
Marty C 11-7     familial versus idiopathic cardiomyopathy
 
Jon's 11-7 reply to Marty C's 11-7     familial versus idiopathic cardiomyopathy
 
Norma L's 11-7 reply to Giorg's 11-5     weight training and heart failure
 
Scott B's 11-7 reply to Giorg's 11-5     exercise & familial cardiomyopathy experience
 
Scott B's 11-8 reply to Aubrey C's 11-5     shortness of breath lying down
 
Scott B's 11-8 reply to Donna V 11-3     generic Coreg in Canada
 
Sandy N's 11-8 reply to Donna V 11-3     Coreg commercials
 
Sandy N's 11-8 reply to Lisa M's 11-2     dealing with heart failure
 
Karen S' 11-9 reply to Sandy N's 11-8     seeking experiences working with CHF
 
Mary Ann H 11-9     seek ideas on helping post-nasal drip
 
Cheryl C's 11-9 reply to Mary Anne M's 11-7     potassium in the diet
 
Cheryl C 11-9     seek ICD experiences - reasons to get one
 
Sue Marie H 11-9     mental alertness problems - ideas?
 
Peter S' 11-9 reply to Mary Anne M's 11-7     potassium in the diet
 
Andy P 11-9     low blood pressure, nearly fainting
 
Jon's 11-9 reply to Andy P's 11-9     low blood pressure, nearly fainting
 
Sandy N's 11-10 reply to Cheryl C's 11-9     pacemaker/ICD experience
 
Peter S' 11-10 reply to Cheryl C's 11-9     ICD reservations
 
J Beery's 11-10 reply to Cheryl C's 11-9     ICD experience
 
Sandy N's 11-10 reply to Karen S' 11-9     fear of dying
 
Ray 11-10     new cardiomyopathy forum
 
Roger G's 11-10 reply to Andy P's 11-9     near fainting & fainting are serious!
 
Jon 11-10     donations in October of 2005
 
Sue Marie H's 11-10 reply to Jon's 11-9     heart rate, decisions, mental frustrations
 
Robbi D's 11-12 reply to Sandy N's 11-10     is depression normal after diagnosis?
 
Jeani R 11-12     should I still take Enbrel?
 
Jon's 11-12 reply to Jeani R's 11-12     Enbrel (etanercept) and heart failure
 
Eric D 11-12     seek CHF doc in Pennsylvania
 
Cheryl C's 11-12 reply to Karen S' 11-9     working with heart failure experience
 
Lowell P 11-12     blood pressure question
 
Jon's 11-12 reply to Lowell P's 11-12     blood pressure range in heart failure
 
Peter S 11-12     ICDs, pacemaker, and combination devices
 
Terry P 11-12     suddenly rising BNP levels
 
Linda D 11-14     Grave's Disease, disability & more
 
Sandy N's 11-14 reply to Robbi D's 11-12     depression after diagnosis
 
Sherrell G 11-14     heart transplant experience
 
Walter K's 11-14 reply to Eric D's 11-12     heart failure specialist recommendation
 
Phyllis A 11-14     living with heart failure, flu shots
 
Norma's 11-14 reply to Andy P's 11-9     low blood pressure experiences
 
Bronny B 11-14     familial cardiomyopathy experience
 
Bronny B 11-14     EF does not rise with exercise - anyone else?
 


Bill H, November 1, 2005 - Hi all, This is for all who use Coreg and are having a hard time paying for it along with the other meds we take. Go to www.bridgestoaccess.gsk.com for info on how to get coreg for free. If I try to descibe it I will mess it up. I is saving me $120 a month now. I hope this helps. bj5250@yahoo.com


Tom S' November 1 reply to Jim T's October 30, 2005 - Hi Jim, You didn't indicate the type of noise you are hearing. If it is a constant tinny, hissing sound, then that would be a form of tinnitus or ringing in the ears, as it is commonly called. I suffer from that and it seems to be directly correlated to the weather. For some reason it gets worse when a low pressure system approaches my geographical area and lessens, and almost goes away totally with high pressure systems. The onset can be very fast and I have gotten so used to it I usually don't even notice it until something reminds me about it like your post. bigheart@muchomail.com


Nancy P's November 1 reply to Jim T's October 30, 2005 - Hi Jim, After my Coreg dose was increased, I hear a noise that sounds like a pump or drill. This happens when I lie down to sleep. Occasionally I hear it while standing. I don't know what is causing it but I think it is the Coreg. nlp520@earthlink.net


Valerie R's November 1 reply to Joe G's October 24, 2005 - Hi Joe, For what it's worth, my mail-in pharmacy switched my Coumadin to warfarin. I called the nurse and she said it was the same thing. The surgeon who put in my ICD/pacer was upset when he found out about warfarin and he told my cardiologist, who was awfully upset. Evidently, different batches of generic are different in strength and can affect the INR. Now I never take a generic without first talking to my cardiologist about it. vgrogers@aol.com


Anita S, November 1, 2005 - Hello Jon, My husband received a letter from his private cardiologist advising him to stop taking folic acid. The doctor said that a new study showed that taking this could put a person at risk for a heart attack or stroke, instead of helping to prevent one. Phil now sees the VA doctor, so he has no way of asking the other doctor where he got his information. Have you or your readers heard of this? Thanks for any information you have on this. Your site is still the best anywhere. dreamersila@netscape.net


Jon's November 1 reply to Anita S' November 1, 2005 - Hi Anita, The theory behind taking folic acid is that taking folic acid lowers homocysteine levels, and people with lower homocysteine levels are at less risk for stroke or heart attack. Homocysteine levels rise when your body has a heart problem so it's used as a "marker" of heart disease but it's probably not the direct cause of any heart problems. I would call raised homocysteine level a risk predictor, not a risk factor.
     What we actually need to do is reduce those things that cause heart problems, instead of trying to directly affect levels of substances that "mark" or "indicate" potential risk.
     I have seen no studies that show folic acid supplementation to have a direct positive impact on heart problems or those conditions that actually cause heart problems. So it would be much more effective to exercise, control body weight, stop smoking and drinking, and take other steps that directly reduce risk of heart problems. In Phil's case, effective meds therapy, blood sugar control, and preventing arrhythmias are probably the key factors to preventing an "event."
     As far as I can see, the trials on folic acid are about as clear as mud. That's why I only have one on-site and almost didn't put even it up. It's just too hard to draw any useful conclusions from the mass of existing trials. If anyone has helpful information on folic acid trials, please feel free to send them my way.
     Don't forget that grains in the USA and Canada are already fortified with extra folic acid before products like bread hit the grocery store shelves, whether you want it or not. So does taking folic acid help? Maybe but it's certainly not proven. Does it hurt? Possibly, but that's unclear to me as well. All I can say is that I don't take it, nor will I. Jon.


Loren, November 1, 2005 - Hi, I have gone back to my cardio doctor and got some news. Everything seemed okay, all my tests came back fine, nothing they have found in my blood work or heart monitoring that they ran while I was in the hospital was out of line. My total cholesterol was 135, no high blood pressure, nothing. Cigarettes (pardon the pun) appear to be the smoking gun, that and (get this) my pre -heart attack stress levels, like they went down afterward.
     I have had a 180° turnaround in activity level. I sleep at odd hours now and sleep a lot. My doctor told me I have an EF of 38 to 39% and that may be the cause of the lack of energy that I am experiencing. He told me that my heart may be "stunned" and has scheduled me for another echo in 30 days and will compare the three to get a definitive answer to the amount of damage.
     When I went in to see my doctor about the allergic reactions to niacin (the week following my heart attack), he pulled me off my blood pressure meds due to dizziness and low blood pressure, but when I went back in for my echo last week, his assistant told me to start taking them again. My blood pressure has not been high other than the two times the physician's assistant took it. It has been somewhere near the 130/70 range every time I have taken it.
     I have not started it back up and wondered if I should. I could really do without taking more meds than I have to take. I have read on CHF that ACE inhibitors help my heart's EF, but at the cost of not feeling like getting up off my duff? I know I need to exercise and have been cleared to ride my bike one mile per day on flat roads only, but I don't feel like I would be able to even sit on my bike if I was as dizzy as I was on my BP meds. Off of them I feel fine. lorenii@hotmail.com


Jon's November 1 reply to Loren's November 1, 2005 - Hi Loren, Which "blood pressure" meds did you take, which ones did you start first, how long did you take the first one before adding the second one, and how long did you take each one before deciding the side effects were too much?
      Blood pressure meds for someone in your position are not really about blood pressure at all. A good CHF specialist would have explained this in detail. Please find one and see him for treatment. See chfpatients.com/faq/doc.htm for more on that. For more on why you need certain meds and for more information on side effects and ways to reduce them, read The Manual.
     Feeling fine with an EF in your range is temporary if you don't take steps to help your heart and your body now. A beta-blocker is your best defense against heart failure after heart attack, especially with reduced EF. If you don't take the right meds now, your reduced EF will become heart failure, and you might never feel good again. That's why it pays to start these meds in a well-designed fashion and give them time to work. If there is really no way for you to get along with standard meds, you need to discuss alternatives with your heart doctor.
Jon.


Loren's November 1 reply to Valerie R's October 16, 2005 - Hi, I made the hot bath mistake about a week after my heart attack. My lower back was aching from lying in bed a lot and since I was warned about the problems with taking anti-inflammatories while on aspirin therapy, I concluded a hot bath would be the answer. I was wrong, wrong, wrong. It wasn't even a minute before I got dizzy and started seeing flashing spots. I crawled out of the tub and once I cooled back off, I was fine. I had read the little warning decals on hot tubs and saunas before about blood pressure patients, but my blood pressure isn't that out of line so I never thought twice about a hot bath. My life is now a learning curve. lorenii@hotmail.com


Giorg, November 1, 2005 - Hi Jon, and hi all. I try to exercise at least every other day, biking or swimming but I feel this is not enough since I am slowly losing muscles and weight. I would like to do some push ups, but my cardiologist a couple years ago told me he did not think it was a good idea. Also, I read in a medical paper that in class 3, "Isometric exercise such as push-ups or weight lifting, should be discouraged because it presents an acute afterload stress to the left ventricle." I am between class one and class 2, so why not to try? What do you guys think? I know that Jon lift weights with success, but what about pushups? And, last, do I risk to damage leads of my ICD with push ups? Consider I have hade my ICD for almost 4 years. Thank you all. giorgclunei@hotmail.com


Jon's November 1 reply to Giorg's November 1, 2005 - Hi Giorg, Pushups are not isometric and neither is weight training in general. Isometrics are when you contract a muscle and then hold that contraction for a number of seconds before relaxing the muscle. Pushups and weight training are "isotonic" meaning your muscles are under load while contracting and then relaxing - not staying contracted.
     Many, many, many studies show resistance training to be one of the best things a stable CHFer can do! See our exercise page for some of these studies at chfpatients.com/faq/exercise.htm. For how to do the exercises, start at chfpatients.com/faq/exercises/exercises.htm. Follow the links. My own CHF specialist prescribed resistance training, including weight training for me. He was very insistent that this was necessary to offset some of the harmful changes in my body caused by heart failure. Some weightlifting exercises are described at chfpatients.com/faq/exercises/muscle_groups.htm#movements. More will be put up as I find time. Jon.


Gene W, November 2, 2005 - Hi, I rarely post but really appreciate the info on this site. Does anyone out there have suggestions for getting rid of edema, especially in the abdomen, when creatinine levels go up if Lasix is increased. I have CAD, cardiomyopathy, 3 stents, 4 coronary arteries with 50% blockage, 3 valves with mild leaks, pulmonary hypertension, and a-fib. To make it more interesting, I also have diabetes, asthma, sleep apnea, and hypothyroidism. I take Toprol-XL, Lasix, spironolactone, lotensin, amiodarone, Coumadin, Tricor, and Lipitor, along with several meds for asthma and insulin for diabetes.
     I am getting frustrated. My edema gets progressively worse but I can't increase diuretics because my kidneys can't handle any more. I watch sodium intake and fluid intake closely. Has anyone had similar experience and found something to help that I am missing? fgalaxie406@yahoo.com


Lisa M, November 2, 2005 - Good afternoon all, This is my first time posting so please bear with me as I finally got up the nerve, put on my "big girl knickers" and started asking more questions about my CHF. I was diagnosed with CHF one year ago at the ripe old age of 41, when I was hospitalized with what was thought to be aggressive asthma. After nine days in hospital, I lost a ton of weight and felt great on release, with no more breathing problems but an EF of 40% (up from 30% on admission), a whole purseful of meds that I had to start taking every day, and being labeled as a heart patient.
     Now, one year into this new "game" of CHF, I'm finding that after feeling great for the first six months, my body is now playing some weird tricks on me. I finally asked my doctor why if I'm supposedly in such good health, why do I feel so crappy? He has no idea what I'm talking about.
     Although my EF has gone back to 55% and my heart returned to normal size with medications and life style changes over the past year, I find that now I'm getting horrible leg pains, especially around my knees, which make it horrible to walk and sleep. Also, the joints in my first two fingers on each hand are making their presence known regularly. I find too that my hands and feet are always like icicles and I'm freezing cold a lot. I realize that quite a few people on the board have the same problem, but does it get better? I have to lose more weight (I've lost 50 pounds so far), has anyone else been successful in getting rid of the leg pain, etc,..., with weight loss?
     Also, what can I do for the leg pain? Does exercising help? Does anyone have any suggestions on exercises besides walking and swimming? I find it difficult to even do stairs right now. Any alternative therapies or supplements, to traditional pharmaceutical therapies? Everyone I've spoken to has a different opinion, but I've not yet met anyone with CHF that has commented?
     How do you deal with people that are insensitive to when you're just having a bad day and learning to live with CHF? I really try to be upbeat and happy, and am generally a very social person, but some people really can be a challenge. Any suggestions on how to explain CHF to an acquaintance who really has no idea what I'm talking about and belittles this condition?
     One more question. What does everyone think about the flu shot? I've never had one and haven't had the flu in a number of years (probably more than 15 years or more of working directly with the public) and don't really believe in them, but my doctor is pushing me to get one. Any comments? sisu63@rogers.com


Jack D, November 2, 2005 - Hi guys, Regarding the thread on Coumadin versus warfarin, I think everybody needs to learn exactly what generic really means. It seems that most of you believe that generic means a different drug, but that's not the case. When you buy Coumadin you always get warfarin because that is the name of the chemical that the pill is made out of. You are all being snowed by "brand" names. The brand name of a drug is some name that a company dreamed up but it is not the name of the chemical compound that is the real drug. Drugs aren't like vegetables. Stores can sell really good carrots and really crummy carrots in the same bin, but a chemical compound must always be the exact chemical compound so it can be called by it's proper name. For instance, C12_H22_O11 must always have that exact configuration to be called sugar whether it is in a C&H or a white bag that says sugar.
     Coumadin is C19_H16_O4 and low and behold, that's the exact composition of warfarin. Even more significant, when you put the word "Coumadin" into the search engine at chemfinder.com (where researchers and chemistry students go), you will find that "warfarin" is what pops up and that Coumadin is just one of the 62 different names given to warfarin. All other generic drugs are the same way. You have been led to believe that you are taking something special because it has a fancy brand name when the drug with the chemical name is the same thing. Generic does not mean you have been switched to a different drug so any different responses are psychosomatic.
     But then a majority of side effects are imaginary already, because people attribute everything that happens to them to whatever drug they might be taking or what kind of soda they are drinking. maddjak@hotmail.com


Jon's November 2 reply to Jack D's November 2, 2005 - Hiya Jack, I'm gonna have to disagree or at least do some clarification on generic and brand name issues. Pills contain active and inactive ingredients. In a generic version, the primary active ingredient must be the same but the other ingredients do not have to be the same. So a generic and a brand name do not necessarily contain all the same ingredients. One generic version may also be different than another generic version on the non-primary ingredients. That's why the FDA maintains an inactive ingredient database. The FDA will tell you that these ingredients do not affect the drug's character at all, but I disagree.
     Note that the FDA claims generics are "bio-equivalent" to brand name versions. However, on their own web site, they admit that "Generics are not required to replicate the extensive clinical trials that have already been used in the development of the original, brand-name drug." In fact, sometimes as few as 36 people will be tested to "prove" bio-equivalence for a generic drug version - them's the rules. That sort of makes it hard to say that true bio-equivalence is achieved.
     Among doctors to whom I have spoken, it is almost universally acknowledged that a generic version of a brand name drug may have a slightly different effect than the supposedly identical brand name version - or different than another company's generic version. Different people react to brand name drugs differently and some people will genuinely react differently to a generic version of a brand name drug - that's people.
     My wife takes a brand name version of a heart drug. She has tried a generic version of the same drug. Even I can hear the difference in her heart beat (rhythm and rate) when she is on the generic versus the brand name version. It is so different that the generic version actually does not accomplish the drug's primary purpose in her case so her doctor no longer allows generic substitution for her. I doubt that Linda's physical response is psychosomatic because we both fully expected her first experience with the generic version to be the same as her experience with the brand name version. That sort of shoots a large hole in your "psychosomatic" reason for different responses. It just ain't always so.
     I don't have any explanation for this but it's an old truth in the practice of medicine that it's the effect that counts, not the theory. For instance, Coreg blood levels are way higher in elderly people than in younger people on the same dose. However, there is no difference in rate of side effects or the effect of the drug itself. I asked my CHF doc about that and he said one of the things he learned long ago as a resident in a hospital was that no matter what the theory, it's what actually happens in people that counts.
     Both my doctors agree that generics do not always have identical effects in all people as brand name versions. It's interesting though, that in some cases, the generic version works better for some people! Jon.


Barb N's November 3 reply to Gene W's November 2, 2005 - Hi Gene, A couple of suggestions if your doctor approves: You might try switching from furosemide to torsemide. Torsemide is absorbed better when you have edema (especially in the abdomen), it's more potent so requires a lower dose to get rid of fluid, a recent study suggests that creatinine is raised less by torsemide than by furosemide and it seems to have some aldosterone blocking properties also, so may help with heart remodeling. There is a generic available at lower price. (Jon's note: Torsemide is unaffected by food and works 4 hours longer than Lasix as well, two big advantages. I take torsemide and have for years. It is roughly 4 times stronger than Lasix.)
     Second, try to adjust (lower) your carbohydrate intake to decrease your insulin requirements as much as possible, while still keeping blood sugar in check. Insulin promotes fluid retention and edema like crazy, especially in Type 2 diabetics who are insulin resistant and require large doses. Another possible option is to add Symlin to your regimen. Symlin is a synthetic amylin hormone which decreases the spike in sugars after eating; it also decreases liver production of glucagon, which raises blood sugar levels. Drawbacks include that it's an injectable, careful and frequent blood sugar monitoring is critical, and it's expensive. However, it can reduce insulin requirements by as much as a half or more.
     Note that there are very different dose regimens for Type one and Type 2 diabetics so talk to a specialist about this drug if you try it, and read the package insert! Finally, if you have apnea, do get as compliant as possible (like more than 5 hours per night) with CPAP. That's not always easy, but I think critical to helping the body get rid of fluid. protoplasm2@aol.com


Tom S, November 3, 2005 - Hi everyone, If you are a veteran receiving VA benefits and medications through the VA or Tri-Care systems, Medicaid recommends you stay on those plans.Do not sign up for the Medicaid Prescription Drug program! It would be a waste of money at this time. That is their recommendation.
     According to the FAQ at the Medicaid web site you will have 63 days to sign up for the Medicaid Prescription Drug Program, without penalty. I just thought you would like to know. bigheart@muchomail.com


Cheryl C's November 3 reply to Lisa M's November 2, 2005 - Hi all, Lisa, Has the doctor that you go to had you have a blood test recently? I was having a terrible problem with leg cramps and pain. In addition to that, my hands and feet would get so cold that they were literally numb. When I had my blood test done, it turned out that my potassium level was too high. Once this was corrected, the problem solved itself. That may not be your problem but it's worth checking into to see.
     Good luck explaining this disease to some people. I've had the same problem with a few and because I don't look ill, they can't seem to accept the limitations that can go with an EF of 20%. It's better to save your breath, I think, instead of wasting time on obtuse people. Just don't stress about it!
     I also had never had a flu shot and never felt it was necessary, but after reading some of the old posts here, I decided it wasn't worth the risk not to have one. I had my flu shot and also a pneumonia shot 3 weeks ago and suffered no dire consequences. Why not be safe rather than sorry? We have enough problems to cope with without risking more because of being stubborn on certain issues.
     On a different subject, Jack, I found your "sour salt" in one of our local grocery stores. It has worked with everything that I have tried so far, but I found that you do need to limit the amount you use. If I add too much, it really is sour and citrusy (is that a word?). Anyway, it does help some of the too-bland items that I was ready to skip because I just couldn't get used to the bland taste. Thanks for that tip.
     Hon, today is doctor day and I'm going to ask about increasing my benazepril, or trying to raise the Coreg dose again. I'm also going to ask about another echo to see where I stand now. With my BNP down to 48, maybe my echo will be better than 20% EF now!? I feel like it's 60 anyway, so I guess that's what counts. Cheryl. cocojo86@yahoo.com


Cheryl C, November 3, 2005 - Hi again, I also wanted to ask Val and Sandy (and any other Florida friends) how they fared in the last hurricane - please reply by e-mail. I see that Val posted a couple of days ago, but haven't seen anything from Sandy for awhile. I hope everybody came out okay. We don't need ma nature dumping on us too! cocojo86@yahoo.com


Joanne R, November 3, 2005 - Hi everyone, I'm new here. My plan is to mainly lurk for awhile to get the hang of this forum. However, I read several posts that talked about vision changes. I didn't realize vision changes could come from CHF. I have glaucoma and cataracts but nothing too serious - if that makes sense. I have bifocals but never use them unless I absolutely have to. Since my CHF, I need to use my glasses almost all the time in order to be able to read articles in magazines, books, labels, etc. I also have great difficulties seeing the television at times. Before my hospitalization I wasn't even close to having the amount of problems I have now. Are vision problems the result of CHF, the meds, what? Thanks. joanna@gwtc.net


Donna V, November 3, 2005 - Hi all, I've been away for awhile and am just catching up on the board. Does anyone else find the new Coreg commercials hysterically funny and talk back to the television as I do? We gotta find some humor in this! Could we only tell people to not ask your doctor for this drug? If he or she is any good, he would prescribe it if a patient, like us, needs the thing. Who would willingly want it? Who wants CHF? I'm at 50mg Coreg per day after two attempts and seem to handle it better this past year and after a biventricular pacemaker implant. As Coreg does it's thing, I am better but still have those dragged out side effects.
     My pharmacist friend is wondering if Coreg's patent might be running out and if it might be going generic soon. She's not had time to check out that possibility. Does anyone know anything on that? If it becomes availabe in generic, that would be a lot cheaper and be a plus. dmvditty@aol.com
 
Jon's note: Patents are usually for 17 years on drugs and Coreg was approved in 1995 so I'm guessing it will be a long while before a generic is available in the USA.


Karen K's November 4 reply to Lisa M's November 2, 2005 - Hi Lisa, I enjoyed reading your post to this site. I was diagnosed with CHF in 1991 at the age of 49. I feel that God has been with me through all of this and I am quite fortunate to be fairly much asymptomatic although I'm classed as class 2 (I think this may be due to my one hospitalization) since 1991.
     I just turned 63 (yuck!). I am quite slim, used to be 5' 8" but unfortunately due to a double spinal curve and degenerating discs, I now am only 5' 4". My point is that to everyone, you would never know I had anything wrong with me. I don't believe I even look my age but that is just my opinion. I'll be honest and say that my back issues cause more problems in my life than my cardiomyopathy.
     I honestly believe that were I to ask for a handicapped sticker, my doctor would give it to me in part due to my back and chronic pain but I just refuse to give up. Interestingly, regarding the pain, I had eye surgery in August: muscle realignment in both eyes. The surgery went well but about two weeks following the surgery I developed an abrasion on my cornea which resulted in a visit to the emergency room. The doctor there asked if I wanted pain medication to which I reponded, "No!" He gave it to me anyway although I haven't taken any. I think it's somewhat funny he would so readily give me pain medication (a corneal abrasion does hurt a lot!) while I've had chronic back pain for over 20 years and no one has even approached the subject of pain medication.
     At any rate, I do believe I'm rambling, so I'll close. Karen. karenk@machlink.com


Tom S, November 4, 2005 - Hi everyone, The post concerning Medicare and VA benefits should have read like the following, sorry for leaving out a key part of that post. Hope it won't cause confusion.
     If you are dropped from the VA or Tri-Care benefit rolls, then according to the FAQ at the Medicare web site, you will have 63 days to sign up for the Medicare Prescription Drug Program, without penalty. bigheart@muchomail.com


Stephanie H, November 4, 2005 - Hi all, I just wanted to pass along some information. My company participates in an Annual Charity Campaign drive (similar to the United Way) which allows for payroll deduction for charitable contributions. This particular agency allows for write-in charities of your choice. I was able to go online, write-in CHFpatients.com and sign-up for donations. What a great way to go! It comes directly out of my paycheck - so I don't see it, I don't have to struggle with remembering to send a donation.
     I would like to encourage all who are able to, to check it out with your employer. If they participate in the United Way campaign or some other agency, see if there is a place to write-in a charity. These campaigns are only open for a limited time each fall so don't delay! howsares@saic.com


Shane R, November 4, 2005 - Hi, My doctor asked me about participating in a research study involving AC2592, and I was wondering if anyone else out there was also on this study, or familiar with the drug. It's a small study group of only 66 total, so I may not be able to find any others but if y'all are out there, I would appreciate any thoughts or experiences. strikeapose71@yahoo.com


Joe B's November 4 reply to Donna V's November 3, 2005 - Hi Donna, According to my pharmacist, Coreg will be available as a generic in 2007. jb5478@netscape.net
 
Jon's note: I sure hope he's right - the brand-name price is outrageous.


Roger H's November 5 reply to Anita S' November 1, 2005 - Hi Anita, In regard to the folic acid, my homocysteine level was at 13 and the cardiologist put me on 5 mg of folic acid daily along with N-acetyl cysteine and I am now running at 10.9. The chart shows under 11.4 as okay. The doctor said he is trying to fine-tune things.
     In one of the posts, there was a question of the flu shot. My doctor recommends for me a shot every year because of the CHF and diabetes I have. One year I did get a reaction and ended up in the Club Med, dehydrated. The plant where I work used to give a free shot every year but that stopped two years ago. rkharmony@highstream.net


Aubrey C's November 5 reply to Anita S' November 1, 2005 - Hi Anita, Well as a new kid on the board, I'm not aware of any protocol that I'm supposed to follow so I'll ask leniency if I don't do things according to Hoyle. I had an ICD implanted in July of 2003 but somehow developed a staph infection August, 2005. The VA sent me to a local hospital where they removed that ICD and five days later put one in my other side. It was supposed to also be a BiV pacemaker but I ended up with another two-lead device.
     My problem is shortness of breath when I'm doing nothing. I wasn't like that before. I am taking 25mg Coreg, 40mg furosemide and 10mg lisinopril.
     Also, I should mention that I believe in using alternative measures when at all possible. That brings me to the original reason for writing: Folic acid. As you know Jon, no B vitamin stands well on its own so all should take the complex. As you mentioned, folic acid, but along with B6 and TMG does a super job of controlling homocysteine. Extra folic acid also helps me control uric acid and therefore I have no recurrences of gout.
     Enough for the first time. crownest2005@Yahoo.com


Giorg's November 5 reply to Jon's November 1, 2005 - Hi Jon, First of all, thank you a lot for your answers and for the links. I gave it a quick look and the information page you set up is very good. And you, in the pictures, are in very good shape as a heart patient! But about weight lifting I am not convinced. I mean, probably it could help some CHF patients, the ones with a DCM that are likely to stay stable or even get better but it could be dangerous for us with familial DCM, that, as you can read, slowly gets worse.
      My cardiologist, who is a CHF specialist and always in touch with genetic specialists who found the DNA defect (in lamin a/c gene) that caused my cardiomyopathy, recommended me not only I avoid weight lifting, but also not to overdo with aerobic activity and that 30 minutes every other day should be enough for me. So I would probabily stay strict to the recommendations of my cardiologist. I am sad because I would like to try, but I fear getting worse. Thank you again. giorgclunei@hotmail.com


Jon's November 5 reply to Giorg's November 5, 2005 - Hi Giorg, I'm not sure why resistance training would hurt someone with familial cardiomyopathy. Some heart conditions do prevent exercise. For instance, someone who has an arrhythmia triggered by exercise, or who has seriously blocked coronary arteries should not be exercising without professional supervision. Most CHFers, however, handle proper resistance training as well or better than treadmill walking. Just because your doctor thinks you may get worse, doesn't mean that exercise will make you worse!
     For what it's worth, 30 minutes of aerobic exercise done every other day is a bit more than healthy people are thought to need on a regular basis, so it is certainly enough for a CHFer. ;-)
     Can you tell me exactly why your doctor believes resistance training may cause harm in someone with a genetic tendency to cardiomyopathy? My own CHF specialist admits that next to nothing is taught to medical doctors about exercise, especially resistance training. I hear a lot of doctors giving opinions on exercise who in fact know nothing about resistance training at all. They just assume that somehow it must be bad for a CHFer to lift "heavy" weights. Facts just don't support that - at all. Not to mention, heavy weights are not required for tremendous results from resistance training. I resistance trained for over a year before I picked up a weight at all and I got excellent results.
     The reason I press on this is that the improvements seen with resistance training are very widespread, accomplished through many areas of the body by the resistance training. Neurohormonal improvements are seen (super-critical for anyone with any type of heart failure), endothelial function improves (from "shear stress"), muscle fiber type distribution improves, ability to do daily tasks improves (strength, especially grip strength), balance improves (from strengthening the often-ignored stabilizing muscles), reactive hyperemia improves so endurance improves, motor unit recruitment improves so it takes less effort to lift or push or pull things in general, bone density improves, posture usually improves, and more.
     Studies have shown (Medline has most of them online) that weight training in people with CAD is just as safe as and easier on the heart than graded treadmill exercise. Researchers also showed that the heart's oxygen use is better with high repetition weight training than with maximum treadmill exercise. The term weight lifting is misleading. What I do and what CHFers should do is resistance training, and believe me, it can be done a lot of different ways.
     I really am interested in your doctor's opinions, because I haven't heard of this before and you know me - I try to learn it all. Please let me know why he is against resistance training for you. I fully agree that any exercise program should be talked over with a person's CHF doc before starting exercise - that applies to all kinds of exercise. Thanks, Giorg. Jon.


Tony M's November 5 reply to Karen K's November 4, 2005 - Hi Karen, I too have had CHF since 2001 and have had six operations since then (none on my heart). I had two neck surgeries in the past year. I had degenerative discs in every one of my neck vertabrae. I had neck pain that made my life worse than my heart problems did.
     What you have to do is ask your doctor for pain control meds - they don't offer it out like candy these days. I am sorry you're hurt and I know what kind of hurt you're in but the doctors don't understand until you tell them you need something for the pain. I will say this about pain - very few people understand until it happens to them. It controls your body and mind far worse than the drugs that control pain. When you try to control pain with your mind and no drugs, you are more forgetful and duller than if you take something to get the pain down.
     I tried the no-drug route and I was more forgetful and had less involvement with my family than when I took a prescription pain med. I had my pet raccoon scratch my eye a few years ago and the pain was so bad I stayed home for several days. My eye doctor told me I wouldn't be able to work and I laughed and said patch it up and I will see about that. I was great until the eye drops he numbed my eye with wore off. They won't give you the numbing eye drops because they stop the eye from healing.
     I have had 9 major operations in the past 10 years and my eye pain was as bad as I could have ever imagined so consider your eye doctor a saint for at least giving you a prescription for pain if you needed it. If I were you, I ask about something safe and a bit stronger than over the counter drugs. Also, pain can make your heart work harder and drop your ejection fraction. I know since it happened to me last year. Tony. ynotmyrick@yahoo.com


Mary Anne M, November 7, 2005 - Hi, It's been 6 weeks since I had the Biotronik ICD implanted and all seems to be going well. I'm still having a problem getting used to this "lump" in my chest. I decided to go back on the spironolactone after discovering that my sweating problem was really being caused by a kidney stone trying to work its way out. At any rate, this drug requires controlling the amount of potassium ingested. Does anyone know what the amount allowable is? It's in all the foods I really enjoy eating, like fruits, veggies, chocolate, milk, etc. I know when I was just taking Lasix, I took a 2 gram (2000 mg) equivalent tablet of potassium with my Lasix. I don't take that anymore. My cardiologist said all I had to avoid eating were dried fruits and nuts. It seems there's potassium in more than those two foods. If anyone's figured out a guideline, I'd appreciate the info. Thanks! mameredith@nauticom.net


Peter S' November 7 reply to Anita S' November 1, 2005 - Hi Anita, If you go to The Archives and pull up my post of 10-8, Ithink you will see where your husband's private cardiologist came up with the notion that folic acid/B-6 is not what it is cracked up to be. I have taken myself off extra supplements of the above since reading of this clinical trial in Europe. PeterSperl@cs.com


Marty C, November 7, 2005 - Hi Jon, Since you didn't challenge Giorg's assertion that "I mean, probably it could help some CHF patients, the ones with a DCM that are likely to stay stable or even get better but it could be dangerous for us with familial DCM, that, as you can read, slowly gets worse." I'm curious. Do you agree that familial cardiomyopathy is less treatable and more aggressive than other types? If the word idiopathic is in there, should we be separating one type from another, as we would different types of cancer? Anecdotally, my grandfather had CHF and died at 60, my father developed CHF in his 50s and is now 74, with normal heart size and EF, while my younger brother died at 40, four years after CHF diagnosis. Being in my second year with HF, I sure hope to be like my Dad! Marty. padre45@aol.com


Jon's November 7 reply to Marty C's November 7, 2005 - Hi Marty, In my reply to Giorg I said, "Just because your doctor thinks you may get worse, doesn't mean that exercise will make you worse!" That's my way of saying without arguing that Giorg's doctor thinks he is certain to get worse but I don't agree with any blanket statements covering everyone with familial CM.
     Cause of CHF can affect treatment and prognosis, but it doesn't always. It's a mistake is to assume that because JoeBob gets worse and his CHF is familial, that BettySue is certain to get worse just because hers is familial. No, I don't think there is a clear dividing line between people with a genetic tendency to CHF and those who have it from cause unknown, or "idiopathic." Does everyone with the genetic "flaw" Giorg has get cardiomyopathy? And how would we know, since those who didn't get CHF wouldn't get tested for it?
     Some people with "idiopathic" cardiomyopathy certainly have a genetic tendency to it but either haven't been tested or have a genetic tendency that isn't recognized yet. There is no cut-and-dried process for establishing who does and who does not. The same goes for viruses causing CHF. Certainly some people with "idiopathic" CHF have a viral cause but came up clean for the usual antibodies on biopsy - so they are considered "idiopathic." This sort of stuff makes generalizing pretty near impossible with today's medical science.
     The same goes for people who have had heart attacks causing their CHF. Some have a genetic tendency to cardiomyopathy but managed to accumulate enough ischemia to have a heart attack before gaining one of the other labels - idiopathic or familial. Where do you draw lines in such cases? Who do you test for what? And will knowing you have a genetic tendency toward CHF affect your treatment if your current CHF is from damage to the heart from a heart attack? Zounds, think about all the possible twists! I could go on and on.
     You have to predict mortality and design therapies on an individual basis - that's why CHF specialists are so necessary - and why we should never hesitate to seek a second opinion if we have any doubts at all.
     My main point about resistance training to Giorg was that it might improve his quality of life regardless of whether it actually improves his heart failure. Bringing some bodily systems back up to speed can really help whether it does your heart any direct good or not. The body is a complex machine, and making sure it's maintained properly matters to how we feel - apart from our CHF and its course. Just the increased grip strength I have gained from weight training makes my every day life a lot easier, from putting away groceries to brushing my teeth, my hands and arms don't get tired nearly so fast.
     Tonight, I'm beat and am pretty sure I rambled all over this topic so let me know if I missed your point entirely. <g> Also, I'm not going to get to all the posts tonight but will finish them up in the morning. Jon.


Norma L's November 7 reply to Giorg's November 5, 2005 - Hi Giorg, Talking about weight lifting, or strength training. I was diagnosed in June of 2003 with CHF. I was lifting weights at the time and my doctor really impressed upon me that I should continue. I am getting ready now to go into the gym to work out with the guys! I took a couple of months off to just walk. I walk around 4 miles a day, 25 or 26 miles a week. I am 82 years young! Sorry Jon, I haven't got funds to you for awhile, but will get to it! nvl@pennswoods.net


Scott B's November 7 reply to Giorg's November 5, 2005 - Hi Giorg, I have familial cardiomyopathy. I can only give you my own observations. Your risk may be primarily sudden death. To hedge against this risk, would a defibrillator make sense if this is a cause for concern? Did the person you inherited the cardiomyopathy die of sudden cardiac death or a slow decline? Your outcome is most likely to be similar to someone else who had the same defective gene.
     I had an EF of 23, and have increased to 30 (with a slightly larger heart). Exercise has helped to vastly improve my fatigue, shortness of breath, blood circulation, and fluid retention (a good sweat is a better way to lose some fluid rather than diuretics). I register above average for my age (35 years) on the treadmill for a healthy person. I am supposed to stop exercising if I feel dizzy. I never feel dizzy except when I push my limit on the treadmill (with a doctor present). Has your cardiologist figured out how many METS you can target for exercise?
     I believe regular exercise and meds can help you to live a more comfortable life (and possibility delay the damage to your heart). At the very least, exercise will help you to cope better with the symptoms. Of course, everyone is different, so there may be some extenuating circumstances around your case. I have been diagnosed for 5 years now (in total). Good luck, Scott B. kitchenerguy@rogers.com


Scott B's November 8 reply to Aubrey C's November 5, 2005 - Hi Aubrey, Shortness of breath while at rest (lying down) is a hallmark of CHF. I'm not sure there is a way to solve this. There are ways to deal effectively with the symptoms. Try one or more of the following: Elevate your head more when you sleep (extra pillows), take more diuretic (you are likely retaining too much fluid, improve your cardiovascular fitness. These are all potentially very effective. Good luck, Scott B.
     PS. Other breathing-relating ailments are going to exaggerate breathing problems. kitchenerguy@rogers.com


Scott B's November 8 reply to Donna V's November 3, 2005 - Hi Donna, Generic Coreg has been available in Canada for roughly a year. Off the top of my head, I think it is about 30% cheaper than brand name. I've been taking it since it has been available. I have not noticed a difference. Thanks, Scott B. kitchenerguy@rogers.com


Sandy N's November 8 reply to Donna V's November 3, 2005 - Hi Donna, Yes, I have watched the Coreg commercials on television but don't understand why you find them funny. I have been through the ugly feelings you get with the pills but after a year on them I'm feeling so much better. I take 25mg twice a day and it took me months to get used to them, then after my pacer/ICD implant I have been feeling so much more like my old self. I would recommend this medication to anyone with heart trouble if it was something their doctor recommended first. bleuskiiisgrl@yahoo.com
 
Jon's note: Funny or not (and I see it both ways), the reason Coreg's makers are paying for television commercials is because Toprol-XL is really cutting into their profits lately.


Sandy N's November 8 reply to Lisa M's November 2, 2005 - Hi Lisa, I'm so glad you came to the board! CHF is so tricky and it has so many different symptoms. I went through the asthma thing for the first 6 months also, then an emergency room doc told me one day that I had CHF. It threw me for a loop and like you I had a lot of learning to do.
     My life was a bit different than you explained. My friends and family all thought I was dying any day now and they treated me like a really sick person, then I found this site. I learned how to find a specialist in CHF then how to take care of myself and yes, go get a flu shot. I had my second this year plus my first pneumonia vaccine shot per my doctor's orders.
     We are tired, in pain (legs and arms for me), find it hard to breathe sometimes, can't get to the top of the stairs sometimes, and have to sit from dizziness a lot but I'm so full of hope and happiness that I will not let this slow me down. I've told my friends and family to let me be and I'll do all I can to do as I'm told as far as my health is concerned, but let me live for now! Just for your information, no, I don't work anymore. It's much too hard to keep up the pace each day. I am 58 and think I'm 35. Wishing you the best! bleuskiiisgrl@yahoo.com


Karen S' November 9 reply to Sandy N's November 8, 2005 - Hi Sandy, Great message! As one of the newly diagnosed, what you said is right on. A lot of learning to do! Thank the Lord, Jon has given all of us the gift of this site. My family was also very scared that I was dying any minute. In my case, my 22 year old old full time college student daughter has been my care provider since my hospitalization. Now that I am fairly stable and more independent, I would like her to resume her "22 year old life style." <lol> I told her there may come a time in the future that I will need care, but it is not now. She truly has been awesome and I feel blessed to have her, but I also want her to have a life and get her degree!
     I am in a quandary of what to do about work. Did some of you try to work before deciding if you were up to it or did the doc decide for you? I am 46. Thanks everyone, and have a great day! cowgirl94952@yahoo.com


Mary Ann H, November 9, 2005 - Hi all, Does anyone have any suggestions on what to take for chronic post-nasal drip? My son is on Coreg, Altace and one baby aspirin. He is diagnosed with IDCM and PVCs. I would appreciate any help. mahall1958@hotmail.com


Cheryl C's November 9 reply to Mary Anne M's November 7, 2005 - Hi everybody, Mary Anne, be very careful with your potassium level as you are taking only spironolactone and not a diuretic. I just had a problem with that and my potassium level ended up at 5.6 and my cardiologist called me at home on a Saturday night to tell me to stop taking it. The blood test was done coincidentally but I was having symptoms that I thought might be an onset of the flu. My legs were cramping constantly, in the middle of the night my legs were freezing from the knees down, my fingers would go numb on me, I had headaches and severe fatigue, and finally I had stomach cramping and severe diarrhea.
     I think that my climb upward was slow and steady for the last 5 months. Once I researched the potassium levels in food on a web search, I was amazed at the amount of potassium in everything (just like sodium). I was never told how much I could consume, but it seems that depends of the individual (size, etc). At least if you know the symptoms of too high a level, you can catch a problem early. Cheryl C. cocojo86@yahoo.com


Cheryl C, November 9, 2005 - Hi everyone, I've got a general question for anyone who has had experience in this area. My cardiologist mentioned at my last visit last week that we should talk about me getting an ICD, which could be a big benefit against sudden death. I said no immediately but have been wondering about it ever since.
     Briefly, I was diagnosed with CHF last May with a hospitalization and an EF of 20%. Two weeks later I had a heart cath and my EF said 25%. This is apparently more accurate. I don't have CAD, no heart attack history, no congenital heart defects, no chemo history, no extreme drinking history. I have been a lifelong smoker (quit March of 2005 before diagnosis), and my maternal grandmother died of CHF at 49 years of age. She had a history of high blood pressure, which led to failed kidneys, and she was very heavy. None of this applies to me.
     For you ICD users, what was the reason that this was necessary? I think my risk of sudden death is low, but of course I could be wrong. I don't think everyone needs an ICD, but if I do need one I may consider it. I guess I need some solid proof that this is necessary, but I don't know much about it. Can anyone help? Thanks, Cheryl. cocojo86@yahoo.com


Sue Marie H, November 9, 2005 - Hello, Can amiodarone (Cordarone) and digoxin (Lanoxin) cause side effects such as reduced motor skills and mental confusion? Has anyone ever experienced this? My husband was experiencing difficulty working a remote control and typing on the computer. He just couldn't do it. After a ton of tests the hospital has ruled out stroke. They did however take him off digoxin and reduced his amiodarone due to a very low heart beat (46). Could these drugs cause a reduction in his mental alertness? Every test turned out 100% so they can't explain it. Any suggestions? Thank you, Sue Marie. mae@canada.com
 
Jon's note: With a heart rate of 46, it's no wonder he got confused and slow! Is he better now?


Peter S' November 9 reply to Mary Anne M's November 7, 2005 - Hi Mary Anne, I share with you the concern over excess potassium in one's system. A recent blood test showed my level to be way too high and my cardio doc immediately took me off spironolactone, even though I was on a low dose of 12.5mg per day. The blood test 10 days later showed a normal potassium level.
     From what I know, the clinical studies to date have only tested this medication for those in class 3 or 4 heart failure. Since you just had an ICD implant, perhaps you fit this category. I am class 2 so am less disturbed by giving it up. In discussions with my doctors, I get the impression that dietary management of potassium intake is difficult since almost any food that is good for you contains potassium. But like you, I would welcome any input on dietary choices - although my sense is that it is not generally a problem for a CHFer unless he or she is on spironolactone, which makes the body hold on to potassium. PeterSperl@cs.com
 
Jon's note: Note that this is addressed in the latest heart failure treatment guidelines.


Andy P, November 9, 2005 - Hello all, I have a quick question about low blood pressure. I'm nearly 2 years into treatment for my CHF and take 50 mg Coreg, 240 mg Diovan, 20 mg Lasix, digoxin, eplerenone (Inspra), and Pravachol (I developed the ACE cough and was switched to an ARB). Lately I've had several episodes of what feels like blacking out, although it never quite gets to the point of actually blacking out. I've also felt an increased mental fuzziness. After the last few episodes, I decided to check my blood pressure, and readings have been in the low 80s over 40 to 44.
     I've expressed concern to my doctor in the past about this but of course, while in for visits, my blood pressure is always in the acceptable range (90/60), and he has felt it's best to keep things as is since I've made good progress. Does anyone have any insight or experience with numbers in this range? Are these too low? I otherwise feel fine and am physically very active. andy@mrdatacorp.com


Jon's November 9 reply to Andy P's November 9, 2005 - Hi Andy, Any episodes of blacking out or nearly so (called syncope or near-syncope) require finding and if possible, treating, the cause. This is not optional. If it is your blood pressure causing this, you need to back off some medication doses or raise your blood volume (the amount of blood actually in your body). Please get a second opinion if your current cardiologist doesn't take this seriously enough - and he is not so far. What happens if you're on a flight of stairs or driving a car when this happens? This is no joke - get it taken care of now. That's my two cents worth. Jon.


Sandy N's November 10 reply to Cheryl C's November 9, 2005 - Hi Cheryl, The day after my pacemaker/ICD implant I felt more energy than before I became ill with CHF. Like you, I did not know the reason for an ICD/pacemaker. It provides more than zaps for sudden death. It paces your heart to beat at a more normal way, thus you feel so much better on a daily basis. I pray you make the best decision for you! If your indeed worried. Seek another opinion. Good luck to you! bleuskiiisgrl@yahoo.com


Peter S' November 10 reply to Cheryl C's November 9, 2005 - Hi Cheryl, Although my physical situation is different than yours (male, age 74, EF 38%, a history of two heart attacks), I too am being pushed ny my cardio for an ICD and I have reservations. I don't refute the results from clinical trials that show statistical benefits in some cases to an ICD, but the story that is not told are the risks involved in having this device invasively implanted (forever) since deimplantation is even riskier than the 1% to 5% chance of complications during insertion; not to mention expense, unpleasant incidents (physical or psychological) of inappropriate shocks, infection, device malfunction, etc. Balancing benefit versus risk may make it clearly the best option for you or others, but I am still on the sideline. Check out heart failure guidelines on Jon's site for further information. PeterSperl@cs.com


J Beery's November 10 reply to Cheryl C's November 9, 2005 - Hi Cheryl, If I were you I would seriously consider the ICD. Especially if you think of the alternative if proven you were wrong. My situation itself would take a long time to tell so to make a long story short, I have a BiV pacemaker. It was implanted 3-10-2005. On May 19th I had my first (and second) shocks. They told me when I had it interrogated that I would have died without it. My heart rate had reached 300 beats per minute. My EF at the time was 13% and really hasn't changed a whole lot. I think I've heard anyone 25% and under they are starting to seriously consider doing the implant. You have everything to gain by doing this!Incidently I was previously told I didn't need an ICD. jbeery827@one-eleven.net


Sandy N's November 10 reply to Karen S' November 9, 2005 - Hi Karen, You sound like a smart woman. We all have had a lot of new living instructions (as I call it). From food to the air we breathe, we just have to do things differently. It's been over two years since I was diagnosed and I am now not worried about dying. In fact, I'm starting to think I-95 will get me before CHF. <lol> Good luck to you! bleuskiiisgrl@yahoo.com


Ray, November 10, 2005 - Hi, New cardiomyopathy forum: www.network54.com/Forum/453024/. Ray. Bigfootrus@yahoo.com


Roger G's November 10 reply to Andy P's November 9, 2005 - Hi Andy, Syncope is cause for alarm! I had this happen several times and while on Diovan with a blood pressure of 90 over something. It is quite scary to wake up on the floor. One time I fell back into the fireplace. Fortunately there was no fire at the time but it hurt like heck for a week.
     I switched from Diovan to Avapro and raised my BP up to 100 over something, and now I feel much better.I still get a little lightheaded from time to time though. Syncope can also be caused by irregular heart rhythm, which may be associated with sudden cardiac death. Get it checked out, as Jon said. Perhaps you need to see an electrophysiologist and consider an ICD. I wish you and all who read and post here the best. rogergthree@earthlink.net


Jon, November 10, 2005 - Hi everyone, Thanks to everyone who donated last month - we got 37 donations! Jon.


Sue Marie H's November 10 reply to Jon's November 9, 2005 - Hey Jon, Thanks for asking if my husband was better. I guess I won't know if he is feeling better for awhile - they've just reduced his medication so time will tell! He sees the arrhythmia specialist on November 21st.
     I just noticed that since he started the amiodarone in August, his personality seemed to change. He seemed to slowly withdraw from everyone and walked around in a daze. The specialist had him wear a monitor three times in the last two months because of a fast heartbeat (atrial flutter) but now his heart rate is too low.
     He is trying to determine whether to do an ablation. He has flareups of a fast heart rate from time to time which land him in the hospital. He's still having trouble typing e-mails because he can't seem to get his fingers to do what his brain is asking. Hopefully in time we'll have answers. Thanks again for all your hard work. Sue Marie. mae@canada.com
 
Jon's note: His frustration level must be incredible. Tell him to hang in there!


Robbi D's November 12 reply to Sandy N's November 10, 2005 - Dear Sandy, It is such a blessing for me to have stumbled upon this site. When I recently received the diagnosis of heart gailure I was stunned! I started feeling scared and depressed after people started treating me like I was dead already! It has been hard adjusting to the many changes that I've needed to make. Fortunately I'm seen at a heart gailure clinic and feel I am receiving excellent medical care.
     My question is this: Is depression normal when first faced with dealing with heart failure? Any insight into to this would be greatly appreciated. Robbilin@insightbb.com


Jeani R, November 12, 2005 - Hi, I have recently been diagnosed with heart failure. Does anyone know if I should still be taking Enbrel (TNF blocker) for my rheumatoid arthritis. I called my heart doctor about it and his nurse called me back and said he was in a dilemma over it. Cool answer, isn't it? If anyone knows, I would appreciate the information. Jeanie. jeanie@tek-web.com


Jon's November 12 reply to Jeani R's November 12, 2005 - Hi Jeani, For what it's worth, a review published in March of 2005, in AutoImmune Review says: RA (rheumatoid arthritis) patients with a history of CHF and another reason for using TNF-alpha blockers do not need a baseline heart evaluation; and that CHFers with well-compensated class one or class 2 HF and another reason for TNF-alpha blockers should be evaluated before starting therapy and then be closely monitored for any signs of worsening heart failure; and class 3 or class 4 CHF should not be treated with TNF-alpha blockers.
     Trials studying Enbrel to treat heart failure (RENAISSANCE in North America and RECOVER in Europe) looked promising but were stopped in 2001. If a class 3 or class 4 CHFer has RA, it really is a dilemma but sometimes you need pain and other symptom relief enough to risk some worsening of your heart failure. That is a situation your doctor should describe to you in detail, then let you make the decision. Jon.


Eric D, November 12, 2005 - Hello, My mother has CHF, recently diagnosed. She is in need of a CHF specialist to manage her situation. Does anyone know of a CHF specialist in the King of Prussia, Pennsylvania area? Thanks! ericdlw@aol.com


Cheryl C's November 12 reply to Karen S' November 9, 2005 - Hi Karen, I'm just 56 years old and was diagnosed last May with an EF of 20%. One month later a heart cath showed an EF of 25%. I was off work for one month and have been working full-time ever since. I am the bookkeeper for a local winery so it is a sit down job that is not especially high stress, at least not all the time. <g> By the time Friday night comes, I'm very tired but that been a lifelong pattern, not just something new with the HF.
     Functionally I would say I'm class 2. I kept asking when I would be able to return to work, but the cardiologist agreed with me that it would probably be better for me, pschologically, than sitting at home. So far it seems to be working well for me. Good luck, Cheryl. cocojo86@yahoo.com


Bob H's November 12 reply to Cheryl C's November 9, 2005 - Hi Cheryl, Go for it! At age 73, I've gone through bypass surgery twice (1983 and 2000) plus a major heart attack in 1993. With an ejection faction of 21%, I was at the stage where I couldn't walk across the living room without being short of breath. I had my ICD/pacemaker implanted in May of this year. In August, I drove a motor home from Florida to Idaho and spent lots of time hiking around in the Rockies. At 73, I feel more like a 40 year old. Good luck to you! rhartong@isp.com


Lowell P, November 12, 2005 - Hi Jon, Most of the folks writing to your site refer to blood pressures around 100/70. My blood pressure is about 125/75 and my doc seems satisfied this is okay. I'm beginning to think he is out of touch with recommended values. What do you think? I was on atenolol but my kidneys wouldn't handle it so I was put on Avapro. Lowell. Lpeper3m@aol.com


Jon's November 12 reply to Lowell P's November 12, 2005 - Hi Lowell, Usually, CHF specialists like to keep a CHFer's blood pressure between 95/60 and 110/75. This indicates reduced load on the heart and is one sign that CHF meds are being effectively used. Jon.


Peter S, November 12, 2005 - Hi all, Regarding the need for, and benefits versus risks of an ICD, I think it needs pointing out from time to time - as Jon does - that there are several kinds of implanted devices.
     A pure ICD has only one purpose: To restablize a heart that is beating out of control. It does not improve the quality of day to day life. A pacemaker, either implanted by itself or in combination with an ICD, can help to synchronize heartbeats and have an impact on exercise ability or decreased fatigue.
     Someone who needs an ICD may not need a pacemaker and vice versa. My sense these days is that many cardiologists are pushing the complicated multi-purpose implanted devices, I am sure for good reasons as well as protecting themselves from possible legal action. My major point here and in past posts is that ICDs (and pacemakers) can provide important benefits, but involve various risks that many prospective recipients are not advised about.
     Maybe Jon can weigh in once again on this issue, although I suspect he wants to be cautious so as not to scare away those whose benefits clearly outweigh the risks. PeterSperl@cs.com


Terry P, November 12, 2005 - Hi everyone, My BNP all of a sudden shot up from 1400 to 2600. The doctors say this is probably a result of a cold I have caught. I was wondering if anyone else has had the same sort of thing happen to them. terry_puls@shaw.ca


Linda D, November 14, 2005 - Hi, I have had a high heart rate off and on for the past 3 years, and was on Inderal LA for about a year, then went off it without any problems. This past May I developed CHF and was placed on Inderal again but it didn't slow me down enough so I was put on Toprol-XL, which helped some. I also have been having high blood pressure since the CHF. My family doctor then changed me to Coreg at 25mg BID and Cardizem at 180mg once daily. I have been on Lasix since May.
     I got worse in September I had heart rate from 130 to the 140s at rest. My EF was 45 to 50%. I felt very weak and very short of breath. I was seen by the cardiologist in May who couldn't say why this happened. Then at the end of September I was still feeling bad, and my heart rate was still 130 at rest. My family doctor screamed at the cardiology group and had another one see me who immediately put me in the hospital.
     He said I was at risk of my heart giving out on me if I didn't get my heart rate down. They increased the Coreg to 50mg BID and the Cardizem to 240mg daily. When in the hospital, they ran a thyroid test and found out I have Grave's. I have been fighting for disability insurance. I was told I was not bad enough and was capable of working. I work as a registered nurse at a very busy rehab hospital. How was I to function in that capacity? Do you think that would have been safe?
     I have been on PTU (propylthiouracil) for 3 weeks and just now have a heart rate in the 90s and blood pressure of 130s/80s. I see that some people do not feel well even with a normal EF. Help! I am going to a lawyer to see if they can help. Linda. mdelpha1@netzero.net


Sandy N's November 14 reply to Robbi D's November 12, 2005 - Hi Robbi, Depression, yes indeed. When you're told you have heart failure, it's such a shock. For years we go through life thinking we are invincible. The diagnosis of CHF sends our minds into a rush of scary thoughts and we tend to get depressed with the news. I am on an anti-depressant and it has helped me a lot. Although I'm not worried about dying anymore I still worry about anything and everything. Maybe it's all those things I have not done yet? Maybe it's all those things I need to say to my loved ones? When I have a bad day I find something good to do, like garden, read a good book, call my children. Just don't sit and feel sorry for yourself. You're still alive, so live! Good luck! bleuskiiisgrl@yahoo.com


Sherrell G, November 14, 2005 - Hi all, Many thanks to Jon for updating my transplant story. Since the update, four people have already contacted me with questions regarding my transplant. After living with CHF and cardiomyopathy for 7-1/2 years, heart transplant was the answer for me to enjoy a great quality of life once again. If anyone else is considering the transplant route, please feel free to e-mail me. sherrellgay@att.net


Walter K's November 14 reply to Eric D's November 12, 2005 - Hi Eric, I have a strong recommendation - Dr. Susan Brozena at the Hospital of the University of Pennsylvania. Her main office is in Penn Tower in Philadelphia but she has a second office in Radnor and is there every other Monday. There are several other doctors in her group (The Heart Failure and Cardiac Transplant Center) who are probably fine also, but I have no experience with them. I recommend her not only because of her CHF expertise but also because it is an extremely caring and responsive setup. Her phone number is (215) 615-0800.
     Incidentally, your mother will also need a regular cardiologist; she may be happy with whoever she has now, but if not I recommend Dr. Clay Warnick in West Chester. He has studied with Dr. Brozena and is much more CHF knowledgible than most regular cardiologists. His number is (610) 696-2850. Best of luck - it is very important to get a good CHF doc; initially I had a highly recommended regular cardilogist who was a disaster for CHF and could easily have killed me. whknoth@yahoo.com


Phyllis A, November 14, 2005 - Hi all, I have been taking a flu shot for about ten years. My cardiologist suggested it also, and I recently had a pneumonia shot which lasts five years. I was diagnosed with HCM and CHF in 1997. After meds were adjusted I've been doing pretty well since, had my hospital stays but have been for the last few years, stable. So there is hope for us, just hang in there. God bless. philaphyllis@aol.com


Norma's November 14 reply to Andy P's November 9, 2005 - Wow, I have the same problem! I told my doctor and he neither was concerned. I said to him what if I were driving and did actually pass out? He said that is very unlikely to happen. You know what I did? I cut my ACE inhibitor in half, and when I went back to my doctor he took me entirely off Mavik and put me on half an Avapro. I have now been cutting my Toprol-XL in half because when I take it I have to lie down. I am very active and think my body is actually stronger than it was. If I become less active, then I believe I would again raise my meds. My blood pressure goes as low as 80/44 and I am just out of it then. I also think one is in danger of damaging their body with such low blood pressure. Of course, every time I go to my doctor my blood pressure is very good, like 103/73. I try to walk 3-1/2 to 4 miles every other day and work out at the gym 3 times a week. nvl@pennswoods.net


Bronny B, November 14, 2005 - Hi everyone, Jon is absolutely correct regarding blanket statements covering everyone with familial DCM, even within the one family. I am sure there are many cases that have not been diagnosed as familial because someone has developed enough ischemia to have a heart attack, before it was picked up. The genes responsible in our family have not yet been identified, even though we have all now taken part in studies.
     My mother was diagnosed at age 39. No other cases in our family had been picked up, then 7 years later her sister was diagnosed. Some doc took it upon himself to tell everyone that it was only in the female genes. Wrong!! Several years later, we had two male family members who were diagnosed with DCM. So far 5 people in all within our family and two with enlarged hearts just outside the normal range. Two of my mother's brothers both had heart attacks but were not diagnosed with DCM. We now know at least one was not picked up, as his son now has DCM.
     Then I was told that if anyone in our family had passed the age of 45 and not seen symptoms, not to worry about further echos because we wouldn't get it. Wrong again! My mother's only remaining brother was recently diagnosed at age 70! Two of the deaths of those diagnosed that have occurred so far, have a different cause, both heart related. So yes, you do have to predict mortality on an individual basis.
     My point being, that even within the one family, things are different. I am so annoyed with those docs who make blanket statements regarding something about which they still have so much to learn. I was also told to avoid weights. I had often attended my local gym using weights and doing exercise classes before diagnosis. Regards to everyone. Bronny. bronnyinaus@batsononline.com


Bronny B, November 14, 2005 - Hi again everyone, I have had familial DCM for 9 years now and was initially diagnosed with an EF of 14% at age 38. After starting meds, it eventually rose to around 50% and seemed to stay there according to yearly echos. Then two years ago, I had an exercise scan that showed an EF of 48% at rest with no rise at all during exercise. The test itself nearly wiped me out for several days. My cardiologist informed me that because my heart was pumping out the same amount during exercise as it was when I was resting, my questions were answered as to why I was so short of breath when I tried to do everyday chores, like vacuuming and cleaning, etc.
     I seemed to get the impression from him that this is how it is for everyone with cardiomyopathy and there was nothing I could do about it. He said I was lucky it did not go down during exercise. Has anyone else had an exercise test where their EF was the same at rest, as it was during exercise? Just wondering. Does anyone know where I could find some info on this? Thanks to all, Bronny. bronnyinaus@batsononline.com
 
Jon's note: This is not how it is for everyone with CHF. It is a matter of concern. I believe you should consider a second opinion, this time from a heart failure specialist.


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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