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

Loretta D's 2-16 reply to Claudia S' 2-15     sleep apnea, CPAP, and oxygen
Cindy's 2-16 reply to Karen F's 2-15     cause and valve questions
Jon 2-18     posts
Brenda George 2-18     amiodarone, ablation, diuretic question
Jon's 2-18 reply to Brenda George's 2-18     amiodarone, ablation, diuretic question
Bobby Williams 2-18     higher numbers not helping & more
Joe S 2-18     dehydration, lung congestion, questions
Jon's 2-18 reply to Joe S' 2-18     I hope others also reply
Joseph P's 2-18 reply to Tracey C's 2-14     volunteering illness info to employer
Joseph P 2-18     doctor's visit, update
Lori 2-18     asthma & Coreg, lots of other questions
Jon's 2-18 reply to Lori's 2-18     here's a start
Gino's 2-18 reply to Robin Lynn's 2-15     sarcoidosis and CHF
Jon 2-18     Coreg and target heart rate in exercise
Julianne 2-19     intro, hypertrophic cardiomyopathy
Jon's 2-19 reply to Julianne's 2-19     hypertrophic cardiomyopathy
Amelia's 2-19 reply to Noreen's 2-15     TEE & to Joseph P about visual problems
Ray 2-19     phrenic nerve severed during transplant surgery
Mary 2-19     could rib and chest pain be from heart?
Jons' 2-19 reply to Mary's 2-19     look at all the possibilities
Rex Bradley 2-19     statin drugs & muscle pain - anyone else?
Tom S 2-20     advice & hope from an long-time CHFer
Gino's 2-20 reply to Joe S' 2-18     valve problems & consequences
Gino's 2-20 reply to Lori's 2-18     asthma and beta-blockers
Dawn B 2-20     cholesterol lowering drugs and muscle weakness
Jon 2-20     posts
Herbert L's 2-21 reply to Tom S' 2-20     thanks for your post
Bill S 2-21     seek Digitek experiences
Jacky's 2-21 reply to Tom S' 2-20     thanks for your post
William C 2-21     could this be a side effect?
Tom S' 2-21 reply to Herbert L's 2-21     Oregon & more
Jon 2-21     doggish update
Bill D's 2-21 reply to William C's 2-21     possibilities
Cathleen's 2-21 reply to William C's 2-21     online resources
Tony's 2-21 reply to William C's 2-21     adjusting meds
Susie's 2-21 reply to Jon's 2-18     target heart rate on Coreg & more
Rodger 2-22     seek a-fib tikosyn experiences
Mike H 2-23     seek SSD lawyer in Sacramento area
Joe's 2-25 reply to Tom S' 2-20     enjoyed your post & more
Cathy 2-25     Oprah talking on heart disease
Dorothy P's 2-25 reply to Rex B's 2-19     pain episodes
Sheryl S' 2-25 reply to Tom S' 2-20     attitude & more
Robin Lynn's 2-25 reply to Gino's 2-18     thanks, many symptoms, need some help
Fred D's 2-25 reply to Tom S' 2-20     attitude & more
Ginny 2-25     can stressful job worsen CHF?
Jon 2-26     site was down awhile - fine now
Barbara P J's 2-26 reply to Sheryl's 2-25     coping
Sheryl C's 2-26 reply to Ginny's 2-25     stress
Lee R's 2-26 reply to Ginny's 2-25     stress
Barbara's 2-26 reply to Fred D's 2-25     liked your posts
Audrey M 2-27     quit my meds, low EF, questions
Jacky 2-27     how long between echos, denial, & more
Joe S 2-27     seek advice on heart surgeries
Claire E's 2-27 reply to Tom S' 2-20     coping with CHF
Keith -27     33 with CHF, love site, had chemo, & more
Tracey C 2-27     BNP level question
Jon's 2-27 reply to Tracey C's 2-27     BNP level explanation
Roger Hugh's 2--27 reply to Janet's 2-8     a local CHF resource for you
Davida S' 2-27 reply to Keith's 2-27     cutting sodium intake
Anita's 2-27 reply to Audrey's 2-27     learning, taking meds, & more
Jon 2-28     just some notes
Robin Lynn's 2-28 reply to Audrey's 2-27     some questions and suggestions
Julie G's 2-28 reply to Janet's 2-8     feel free to drop me a line & more
Maria's 2-28 reply to Keith's 2-27     low sodium eating and cooking resources, tips

Loretta D's February 16 reply to Claudia S' February 15, 2002 - Hi Claudia, I have CHF too, and was later diagnosed with mild apnea, but the main thing was that my oxygen level dropped very low in my sleep. I am currently on CPAP with oxygen. I wouldn't sleep without it.

Cindy's February 16 reply to Karen F's February 15, 2002 - Hi Karen, With your right-sided HF, do you have the tricuspid valve leakage or can there be other causes? Thanks, Cindy.
Jon's note: I don't mean to sound dense but is there some reason you are focused on your valves? I don't know if it will help any, some causes of right-sided CHF and more info can be found through the links I put in my 2/15 reply to your 2/14 post

Jon, February 18, 2002 - Hi everyone, Posts will be late today. I still have to get somebody over here to clean up my fallen trees, my male Rottie has developed CHF, I have get together with a lawyer about the site's status, my wife's pages need updating, I'm buried alive in e-mail, and so on and so forth. Hopefully, I'll get posts caught up later this evening. Jon.

Brenda George, February 18, 2002 - Hi everyone, I have been reading posts for a long time and noticed a lot of discussion about amiodarone. There is a side effect that has not been mentioned that nearly killed my mother. This is cirrhosis of the liver. Apparently it is quite rare but the symptoms are similar to CHF. She gained several kilos of fluid in the abdomen and was very short of breath. It was not until all her meds were withdrawn that her conditioned slowly reversed. The main treatment is a no-salt diet. While at my cardiologist recently I was offered amiodarone for a-fib. I declined. I decided that I am allergic to ACE inhibitors and there would be a good chance of being allergic to amiodarone as well. The doctor is now suggesting ablation therapy.
     Could someone tell me what dosage of furosemide is normal and what dosages can be safely taken? I read that furosemide can increase cholesterol levels. Mine is 7.8 and my level has risen in the past few months. Thanks for anyone's thoughts.

Jon's February 18 reply to Brenda George's February 18, 2002 - Hi Brenda, There really isn't a "normal" dose of furosemide (Lasix). You should take what you need. The usual dose range is from 40mg once a day to 320mg once a day. After that, a doctor usually tries a stronger diuretic like Demadex or Bumex, also taken in pill form, and also loop diuretics. Roughly speaking, one mg of Bumex = 10mg of Demadex = 40mg of Lasix. Demadex (torsemide) may actually be a better choice for a person with CHF. See this study.
     Amiodarone is a very effective drug for treating certain arrhythmias, but you are quite correct that it has some very nasty, and potentially fatal, side effects. Anyone considering taking it should read up on it and then discuss it with their doctor. Jon.

Bobby Williams, February 18, 2002 - Hi all, I have CHF. My heart is enlarged and pumping out but not too well. I am going on now 2 years with CHF, I take about 6 meds a day. My EF started out at 25% then went up to 35% and about 6 months ago it was up to 55%. Even though I am up there I still have a hard time breathing and get tired out easily. They tell me that I will need a transplant in about 5 years. The meds that I am on are furosemide, metoprolol, digoxin, accupril, spironolactone and Coumadin. I go back to see my heart doctor and have an ultrasound done on my heart to see how it is. It helps to know that there are others out there going through the same thing and it helps to talk with other people about it.

Joe S, February 18, 2002 - Confusion, Confusion.Twice now the docs have told me I no longer have CHF. Then they tell me my aortic valve is 80% blocked, then they tell me I have diabetes. The combination has been making it very hard to regulate my fluid intake and it seems like I get dehydrated easily. Ten days ago my salivary gland became infected because of dehydration and the regular doc tells me to stop taking diuretics. I do, and last night it was deja vue! I was back to 3 years ago when I couldn't catch my breath, like my lungs were filling up with fluid again.
     I guess my question is, can my lungs start filling again even though my ankles do not swell? If I'm only getting 20% of normal blood flow into my heart, am I having the same effect as if I had CHF, or do I still have CHF? If it wasn't for the infection in my gland they would have replaced my valve a week ago. Does anyone have any advice? Joe S.

Jon's February 18 reply to Joe S' February 18, 2002 - Hi Joe, I don't really have any advice, I'll leave that to others. I can give a few quick answers. CHF is a collection of symptoms, not a disease. Therefore if you have those symptoms and they are heart-related, you have CHF. Yes, your lungs can become congested with fluid without any part of your body showing swelling. Jon.

Joseph P's February 18 reply to Tracey C's February 14, 2002 - Hi Tracy, I would not volunteer the info about your health but if you are asked about it, you don't have to go into detail. I myself would feel good about myself if the problem was out in the open to my next employer. I would not have to live my life in fear that my employer would find out. Face it now, not later. Stress is our worst enemy. God bless, Joe.

Joseph P, February 18, 2002 - Hi Everyone, I had a doctor's visit on Friday and told him a lot of things that he was not aware of. I have trouble with coordination, vision and focus, sleep and energy. What they are doing now is to increase my diovan to 160mg a day to build my heart and also to give me more energy. Also, the doctors are training my heart to try to beat as closely to normal as possible with meds so they can do an ablation in 2 months. After the ablation, if everything goes well, they will reduce or even take me off Pacerone. God bless, Joseph P.

Lori, February 18, 2002 - Hello everyone, Thank you Jon and all of you, for letting me quietly gather and absorb so much great info on this site. I was diagnosed 5 months ago with IDCM by my cardiologist. My EF was 40% and I have had an asymptomatic LBBB since I was 27. I have been getting echos every 2 to 3 years since then. I have complained of increased SOB for a year or more. I have mild asthma, so the docs kept increasing my asthma drugs. I also was on cardizem (a CCB) up until a few years ago. I recently saw a CHF doc who said I have hypertensive disease (systolic), with LV dysfunction, and inability of my heart muscle to relax. I am only on 10mg Altace. My EF was up to 55% by cath, and I felt better last week. This week I am more SOB and have some chest pain and fullness. Can EF change weekly? Can a person with asthma and a LBBB take Coreg or only cardiac specific beta-blockers? Are they as effective? Sorry for all the questions. I have a 3 year old boy to take care of and this is a bit overwhelming at times. Bless you all, Lori.

Jon's February 18 reply to Lori's February 18, 2002 - Hi Lori, I hope others jump in because I am pretty tired and may make a mistake. However, when your heart muscle does not relax properly, making it hard to fill with blood, that is called diastolic dysfunction rather than systolic dysfunction. Naturally, you can have both, and most people with diastolic dysfunction do also have systolic dysfunction.
     Asthma meds often worsen CHF symptoms so it's wise to try and keep asthma meds at a low dose whenever possible. Often, increased shortness of breath bespeaks a need for more aggressive CHF meds therapy. Increasing an ACE inhibitor dose or adding Aldactone (spironolactone) or digoxin may help.
     EF can indeed change pretty rapidly. You can read up on EF at the EF page. ;-) It is also addressed in passing by Dr. Marc Silver here (question number 32).
     I don't know how individual CHF specialists handle beta-blockers in asthmatic patients but it can be dangerous. The Coreg prescribing information says that "Coreg is contraindicated in patients with bronchial asthma (two cases of death from status asthmaticus have been reported in patients receiving single doses of Coreg) or related bronchospastic conditions, second- or third-degree AV block, sick sinus syndrome or severe bradycardia (unless a permanent pacemaker is in place), or in patients with cardiogenic shock or who have decompensated heart failure requiring the use of intravenous inotropic therapy. Such patients should first be weaned from intravenous therapy before initiating Coreg. ... In clinical trials of patients with congestive heart failure, patients with bronchospastic disease were enrolled if they did not require oral or inhaled medication to treat their bronchospastic disease. In such patients, it is recommended that carvedilol be used with caution."
     Toprol-XL's prescribing information says: "Toprol-XL is contraindicated in severe bradycardia, heart block greater than first degree, cardiogenic shock, decompensated cardiac failure, and sick sinus syndrome (unless a permanent pacemaker is in place). Beta 2-adrenergic blockade results in passive bronchial constriction by interfering with endogenous adrenergic bronchodilator activity in patients subject to bronchospasm and may also interfere with exogenous bronchodilators in such patients. Patients with bronchospastic diseases should, in general, not receive beta-blockers. Because of its relative beta1-selectivity however, Toprol-XL may be used with caution in patients with bronchospastic disease who do not respond to, or cannot tolerate, other antihypertensive treatment."

Gino's February 18 reply to Robin Lynn's February 15, 2002 - Ciao Robin, A past ACE 1 therapy does not affect the ACE 1 level that is high in 75% of patients with sarcoidosis. There are also a few cases of false positive results, generally due to other illnesses like tubercolosis, leprosy, berilliosis, silicosis, asbestosis, granulomatous hepatitis, micotic infections, and some lymphomas.
     The heart is involved in only 5% of patients affected with sarcoidosis and usually the main complaints are:

  1. restrictive cardiomiopathy, where the heart become stiffer due to infiltration of the ventricle walls by the granulomas and fibrous tissue with consequent diastolic heart failure
  2. arrhythmias and AV blocks
  3. right heart failure secondary to pulmonary hypertension caused by lung involvement
  4. pericarditis

However, the medical literature describes very few cases in the world of DCM associated with sarcoidosis. About chest pain, medical literature does describe rare cases of patients with sarcoidosis and coronary artery involvement. Ciao, Gino. (e-mail address withheld by Jon)

Jon, February 18, 2002 - Hi everyone, Someone e-mailed me recently about target heart rate during exercise when taking Coreg. I did get an answer from a CHF doc that really addresses this, but I no longer remember who e-mailed me the question so here's how the doc's reply went (roughly):
     In general, target heart rates are meaningless markers for exercise targets while on beta-blockers. Hitting 85 to 90% of age-corrected target heart rate while on a beta-blocker is simply an indicator that beta-blocker effect (dose) has not been maximized. While taking a beta-blocker, exercise targets should be based on perceived exertion and awareness of thresholds for "exercise hangover" based on prior experience.
     There are different reasons for not taking your beta-blocker dose before a stress test - most of them not very good reasons. I usually am trying to assess the state of the patient while on the program I am prescribing, so I don't stop the beta-blocker before the test. If you just skip the morning dose, and not 2 or 3 doses, it's not really a beta-blocker free study, just a study during a muddled stage of therapy.
     Jon again - so he believes that "real-life" results from a stress test are the most important and that changing drug therapy just for that test does not reflect your daily physical condition and function. It's like the way that now in trials, they add a new drug to standard CHF drug therapy so they can see how it will really affect real-life patients. They did not used to do this. I hope this helps. Jon.

Julianne, February 19, 2002 - Hi, I had an echo and cath and have been told that I have hypertrophic cardiomyopathy. I take 100mg Lopressor BID. I was told not to exert myself beyond a brisk walk. I am 51 years old and am very active. I don't have a clue about EF or anything else you guys talk about. I am goig back to The manual. I can't ask if I don't know!

Jon's February 19 reply to Julianne's February 19, 2002 - Hi Julianne, Welcome to Jon's Place. Hypertrophic cardiomyopathy carries a higher risk of sudden death when you're physically active like in sports than other forms of cardiomyopathy. I don't mean to scare you but that is why your physical activity is limited now - so that your heart doesn't go into a high-risk zone of activity. Talk to your doctor about pacing for your heart condition. You might also look through the listings at Me Too and Who's Who to contact others with HCM. Jon.

Amelia's February 19 reply to Noreen's February 15, 2002 - Hi everyone, Noreen, regarding the TEE, this is a non-painful procedure. I had this done twice. First they inserted an IV line, then sprayed my throat to numb it, and started the sedation. When you are pretty well out of it, they insert a tube down your esophagus. You feel very little. I wasn't really aware of what was going on. You might have a sore throat for awhile, though.
     Joseph P, maybe your problems of vision are from the Pacerone, which is amiodarone (Cordarone). There are lots of posts on the dangerous side effects of amiodarone, so you might want to check with your doctor. Good luck, everyone.

Ray, February 19, 2002 - Hi, I am posting on behalf of my father, who has been in the hospital 6 weeks after heart transplant. Apparently his phrenic nerve was clipped during the transplant surgery. As a result his diaphragm is paralyzed and breathing is difficult. Has anyone heard of this happening? Is it common? The reason the doc gave me is that it was hard to see due to heart scarring caused by cancer chemotherapy, which my father received 15 to 20 years ago. Thanks!

Mary, February 19, 2002 - Hi, I have reduced left ventricular systolic function with sinus tachycardia and global hypokinesis. I am interested in knowing whether my heart condition and sinus tachycardia could be causing the chronic and acute chest and rib pain I continue to have. I also now require oxygen all the time because I am very short of breath. It hurts my chest and rib cage whenever I pick up anything and try to carry it. Sweeping with a broom is impossible, as I can hardly twist my rib cage. I was much worse a year ago but continue to have chronic and acute worsening of my rib cage and chest area pain.

Jon's February 19 reply to Mary's February 19, 2002 - Hi Mary, I am not a doctor. I once had an injury that caused inflammation of the cartilage in my rib cage (costochondritis) and it caused pain like yours. Nerve blocks reduced the pain to manageable levels while it healed, which took quite awhile. Twisting and breathing both caused me incredible pain and there's nothing worse than when your own breathing causes intense pain - it never lets up. I'd get a good orthopedic specialist or internist to look at that possibility or something similar, such as a rib poking into a lung. That happened to me as a teenager from wrestling and a good chiropractor fixed it (after taking a chest x-ray) when the doctors told me it was all in my head. <g> Sometimes it ain't the heart at all, as you so rightly wonder. Jon.

Rex Bradley, February 19, 2002 - Hi, I'm off to see my cardiologist Monday to talk about what looks like the statin problem of pain in my joints and muscles: right elbow, biceps, triceps, deltoids, upper spine. Any suggestions on what to ask about, or worry about, from anyone who has had this experience?

Tom S, February 20, 2002 - Hi, As I am well into my sixth year with CHF, an EF of 20 to 25% and remembering a prognosis of being dead before I left the hospital all those years ago, I just want to encourage some of the new people to this website that it may not be as bleak as you think. I am one who believes that living is done on a daily basis and dying is only done once.
     There have been radical changes in my families lives but we have all adjusted rather well to it. There certainly is a much lower economic level that we are forced to live on, but I dare say we live much better than a lot of other people in this world who suffer a whole lot more privation. Healthwise I have slipped in the past few years and I can feel it, but I will not give in to it. That does not mean I go out and run a mile every day; no, I listen to my body and moderate what I do based on what it tells me.
     I have been monitoring this web site for several years and at one time was very active in posting to it. For various reasons I stopped reading it and went on to other things. However, I do realize that my mere existence could be a boost to those who are just starting out on that road of uncertainty that started for me 6 years ago on January 8th when 3 differant doctors told my wife and older children that I would be lucky to leave the hospital. At the time my EF was 15% and I had blown up like a balloon all over my body. I went from being a heart transplant candidate to being a patient who is "maintained" by medication and moderation.
     For those of you who worry about every little ache, pain, odd heart beat, dizzy feelings, cold feet, warm feet, insomnia, sleeping too much, warm flashes, fuzzy vision, and a myriad of other things - pay attention to them, but don't obsess on them. After a while you know what is to be taken seriously and acted on, and what will probably pass. By the way, I have not had a "crisis" or been in the hospital since I left 10 days after my first CHF episode, something my doctors and cardiologists are always amazed by.
     Lastly, read this forum and pay attention to those of us who have been through what you are going through now, and what you may experience in the future. However, don't take everything you read here as gospel because each person is unique and has their own situations and complications that others may not. All I know is that despite dire warnings of impending doom, I have risen each morning to a new day to celebrate life with my wife and 8 children and 5 grandchildren.

Gino's February 20 reply to Joe S' February 18, 2002 - Ciao Joe, In severe aortic valve stenosis, the left ventricle becomes larger and stiffer in order to generate an intra-cardiac pressure high enough to push the blood through the aortic valve closure. When the ventricle is stiffer, it requires a higher filling pressure during the relaxation phase (disatole) of the pumping cycle; this higher pressure is transmitted backward to the left atrium and pulmunary veins, and blood vessels.
     In this condition, it is easy to develop pulmunary congestion or edema (lungs congested with fluid) when there are some common situations: like an expansion of body intravascular fluid, a fast heart rate, high blood pressure, a silent ischemia (reduced blood flow), a not-well-controlled diabetes, and so on.
     I hope you can resolve the infection and undergo as soon as possible an aortic valve intervention - the only definitive therapy in your case. Ciao, Gino. (e-mail withheld by Jon)

Gino's February 20 reply to Lori's February 18, 2002 - Ciao Lori, I would add some impressions about your post. Also, asthma may provoke SOB and sometimes chest pain. Asthma may vary also very quickly. Do you check your peak flow of breathing at home? About beta-blockers and asthma, usually asthma is an absolute contraindication for beta-blocker use even at low dose. For example, I have seen asthma attacks triggered by ocular instillation of just one drop of drugs with a minimal dose of beta-blocker used for glaucoma. However, on rare occasions - depending on the individual patient asthma profile - one may attempt to use small dosages of beta-1 blocker like atenolol or metoprolol.
     I think the best thing you can do is to have a referring cardiologist and pneumologist who consult each other, in order to personalize your therapy and continue proper follow-up management strategy. Ciao, Gino. (e-mail withheld by Jon)

Dawn B, February 20, 2002 - Hi everyone, I had a little problem with Zocor. It turns out that there is a rare reaction that causes muscle pain and kidney failure. I was short of breath and have been on cholesterol-lowering meds for several years, and Zocor for 3 months. I started a new exercise program, mainly getting serious about exercise, and thought I was just using new muscles that I hadn't used in awhile. I had to go to the hospital and have lots of tests done. My lungs are clear, the shortness of breath was because of the muscle weakness. My "new" heart is pumping away. Don't be afraid to tell your doctor about changes, especially if you have had a transplant. Take care, everyone.
Jon's note: Any statin drug can cause this

Jon, February 20, 2002 - Hi everyone, I have to take my male Rottie to the doggie cardiologist tomorrow morning so posts will be quite late. He apparently has CHF too. Jon.

Herbert L's February 21 reply to Tom S' February 20, 2002 - Hi, Thank you Tom, for those thoughtful words that allowed us into your past life and our future. Hearing from you gives us the courage and knowledge we need to normalize our lives. Again, thanks. How about moving to southern Oregon? I'd like to take my walks with you.

Bill S, February 21, 2002 - Hi, Since starting Digitek following an episode with a-fib, my blood pressure has gone up to the 180/120 range for 12 hours following the taking of Digitek. Does anyone have experience in noting if Cozaar and Digitek are not working together well. I also take Hawthorn Berry, but have stopped that to isolate the Digitek problem.

Jacky's February 21 reply to Tom S' February 20, 2002 - Hi, Thanks Tom, it is really encouraging to hear that someone in your position has done so well.

William C, February 21, 2002 - Hi, I was diagnosed with CHF in February, 2000. In April of 2000, a pacemaker was implanted. My condition has gradually improved over the two years but I feel sick most of the time and my cardiologist and primary doctor don't know why. I believe there may be side effects from the medicines I take. The daily medicines and dosages are 40mg furosemide, 12.5mg Coreg, 10mg prinivil, 10mg Coumadin, 25mg spironolactone, 0.25mg Lanoxin, 20mg Zocor, and 30mg isosorbide mononitrate.
     Can anyone offer some suggestions about these medicines and possible side effects? Sometimes, like over the past few days, I have not felt as sick. I have had numerous stomach x-rays but nothing else is turning up. Are the medicines' side effects simply something I have to endure for getting better and healthier? Thanks, Bill.

Tom S' February 21 reply to Herbert L's February 21, 2002 - Hi, Funny you should mention southern Oregon; I have a son, daughter-in-law, and grandaughter living in Keizer, Oregon. I have yet to see or meet the daughter-in-law or grandaughter since I have not been able to make a trip west due to financial and health considerations. As for moving, I think I'm pretty well planted on the east coast. I get confused in the central time zone and don't think I would fair well in the pacific.

Jon, February 21, 2002 - Hi everyone, I am pleased to report that my dog does not have CHF. He just has a-fib and needs no drugs. His swelling was related to his shots and not his heart. Let me tell you, I wish an echo for us CHFers cost what an echo does for a dog - they're cheap! Jon.

Bill D's February 21 reply to William C's February 21, 2002 - Hi William, There are two suspects in your medicines. Do you take 10mg of Coumadin every day? I thought you were tested every week and adjusted the Coumadin dose? The other one is Zocor. All the "statins" made me sick. Try doing without the Zocor. If you get better, that's the one! Bill D.

Cathleen's February 21 reply to William C's February 21, 2002 - Hi, Try,, and The aforementioned urls might provide you with some helpful info with regards to side effects. Take care.
Jon's note: You can get to a lot of useful links at

Tony's February 21 reply to William C's February 21, 2002 - Hi William, I am confused why your doctors don't know why you could feel sick or nauseous, after putting you on many different chemical compounds (medicines), a few of which have nausea as a possible side effect. Each person is different, and each person can have different reactions to a single medicine. When you start mixing medicines together the equation gets much more complicated. Do you take the drugs at the same time?
     I dislike the medical approach of throwing bunches of drugs at a patient, in the hopes that one or more will help but unfortunately, doctors have limited time to spend on each patient, so the "shotgun" approach to prescribing drugs is used. I've spent countless hours studying the drugs prescribed for my CHF and a-fib, and have worked with my doctor to significantly change and adjust my meds, depending upon effectiveness, side effects, and changes to my condition.
Jon's note: Uh, I actually agree with a lot of that, but in William's case his doc prescribed almost exactly what the official guidelines say he should try

Susie's February 21 reply to Jon's February 18, 2002 - Hi Jon, Thanks for the answer on target heart rates. That is the same info I've been able to find also. It would be nice if we could be told a (pulse) number but I think most of us work at our own levels even prior to heart trouble. I seem to work out and feel okay, then I might go back the next day or the following day and not be able to do nearly the previous amount of exercise or work, and I am exhausted the remainder of the day. Thanks for locating that for me and I hope your Rottie is doing okay. Best wishes for him.

Rodger, February 22, 2002 - Hi, I was just placed on the drug tikosyn for chronic a-fib. Has anyone elso tried this, and if so what experiences have you encountered?

Mike H, February 23, 2002 - Hi, Can anyone recommend a good SSD lawyer in the Sacramento, California area? Thanks!

Joe's February 25 reply to Tom S' February 20, 2002 - Hi Tom, Thanks for sharing those beautiful words that I love to read, beating the odds on life expectancy. I also was told, at least my wife was, that I would not make it out of the hospital alive and well, here I am. However, it's only 3 months for me. Still, I do intend to be around for another 15 or so years. I am 60 now. I also have a 20% EF and have just changed CHF specialists. I was not pleased with the ones treating me in the hospital. My new doctor seems more concerned with me as a person and not an experiment, like the previous ones. I look forward to reading more from you in the years to come. Hang in there, Tom.

Cathy, February 25, 2002 - Hi, I wanted all to know there is a heart disease and women show Monday 25 on Oprah.

Dorothy P's February 25 reply to Rex B's February 19, 2002 - Hi Rex, I had a similiar problem with pain. Mine was in my right hip. If I sneezed, coughed, etc,..., the pain was very intense. It took several weeks for my body to adjust. I no longer have the pain. Hopefully, you will have the same experience. Best wishes for good days, Dorothy Powell.

Sheryl's February 25 reply to Tom S' February 20, 2002 - Hi Tom, Thanks for the upbeat report on your health. I agree that we should live for the days we live, and not live for dying. Some people dote on every little twinge or tic that their bodies have. If you are staying out of the hospital and having some good days, you are doing well. I do not care about the medical details of what my heart is doing. I care about how I feel. I am knowledgeable about my condition and my medications and I pay attention to what my body tells me.
     We are sick so we are not going to feel very well. Some days we will feel down right lousy. That's just the facts. Deal with it. Do all you can to help your body feel its best, then try not to dwell on the symptoms. I really feel that your attitude can affect your health as much as the meds. If you have a bad attitude, that is something you can control; work on it.
     For those of you that are newly diagnosed, there is hope. Most of us do feel better with good medical care and with making ourselves better through life style changes. It may take years to feel better and we as a quick-fix-society have trouble accepting this. I bet if all the lurkers for years wrote in that they have improved, Jon would be swamped with e-mail.
     Someone suggested that a person go off his Zocor. Please don't tell people to go off their meds on their own. Work with your doctor to solve problems. Keep hope in your hearts and an eye on your weight. Sheryl.

Robin Lynn's February 25 reply to Gino's February 18, 2002 - Hi Gino, Thank you for replying to my post. I was hoping you would. I no longer believe that I have IDCM. In the researching I have been doing, I am sad to find that I may be one of those 5% cases. Since my diagnosis there have been too many unanswered questions concerning my heart condition. I now go to a CHF clinic. I do have mild pulmonary hypertension. My heart biopsy was negative for sarcoid, but I have read that if there are certain things present - arrhythmias, myopathy, scarring consistent with MI, pericarditis, and symptoms that mimic CAD, that it should be confirmed as sarcoidosis. All these symptoms are present and the others show on an stress test imaging I had in 1998. I believe that most everything now is mild enough and that it's just a matter of getting my doctors together on it.
     Please feel free to send me anything that would be helpful to me to understand what is wrong with me. All those other diseases you mentioned have been ruled out. My ACE levels went to 150 before the steroids. One thing all my doctors agree on is that whatever is going on, it is systemic and affecting every part of my body from head to toe. Here's what they've come up with so far: sarcoidosis, IDCM, CHF, irregular heart beat, v-tach, migraines, rheumatoid arthritis, mild pulmonary hypertension, and now fibromyalgia. They have told me that I have cardio-spasms. I am having vison problems when I lie down to watch TV and now I go into these little brain-dead moments when my eyes feel like they are being pulled from behind, jerking, everything is black and I'm foggy-headed. Can anyone help me understand what this might be. I hurt all the time; even being touched hurts me. I am due for a lung biopsy soon and maybe another MRI.
     Thanks for your help Gino, and to anyone who wants to reply. Blessings to all, Robin.

Fred D's February 25 reply to Tom S' February 20, 2002 - Hi Tom, Thanks for the encouragement. I am 56 years old and I was diagnosed with CHF 18 months ago. I think that I have finally gotten my meds at the levels that they should be, because for the most part I feel good. I do have to pace myself on the days that I feel "really good" because I pay for it the next few days.
     I am unable to work, but thank goodness I have disability insurance and Social Security. I also feel that the support of family and friends is very important to one's physical well being. For once in my life I am listening to my doctors and doing what I am supposed to do. My resistance to anyone telling me how to live was the cause of my undoing.
     In reading the posts on this site, it is so evident to me that I do not have it that bad. I feel so sorry for the people that are fighting for benefits, and trying to exist on nothing. I keep them in my prayers. There are a lot of folks out there that are a lot worse off than I. I try to remember all that when things don't go my way and I want to feel sorry for myself. I applaud your attitude. I have no intentions of dying today and God and I will deal with tomorrow when it comes.

Ginny, February 25, 2002 - Hi, I am newly diagnosed with idopathic DCM. I am on Coreg, Zestril and aspirin. I have also cut back to working half time. My cardiologist won't recommend quitting but I wonder whether having a stressful job (teaching) has the potential to worsen my situation. Does anyone have any thoughts or experience with this? Thanks for everything, Ginny.

Jon, February 26, 2002 - Hi everyone, Sorry for the site going down for awhile - couldn't be helped. It should be fine now. :-) Jon.

Barbara P J's February 26 reply to Sheryl's February 25, 2002 - Hi, Well, I fully agree that we should treat each day and do the best we can and not dwell on the bad days. Even though my numbers are better I still have a lot of bad days. This is compounded by the fact the SSD is still on hold. I had a hearing and that man wants me to see their contract cardiologist because my "numbers are good so you should be good" per the hearing officer. Meanwhile, on my bad days I do what I can and on my good days I do my best to pace myself.

Sheryl C's February 26 reply to Ginny's February 25, 2002 - Hi Ginny, Stress is bad for you. If you are on your feet all day, that is bad also. Sit down as often as your can and prop your legs up if possible. Explore stress relieving exercises like meditation. If you are a "Type A" control freak like most of us are, stop it! Good luck, Sheryl.

Lee R's February 26 reply to Ginny's February 25, 2002 - Hi Ginny, My feelings would be that a stressful job would contribute to not feeling well. Sometimes physicians are reluctant to advise quitting a job because some folks do better working, but it is an individual thing. When I was diagnosed, my work schedule was between 45 and 50 hours per week (a desk job) but with reports and pressures I felt like I couldn't keep going, so my doctor finally did recommend leaving and collecting SSD. For me it worked out. I hope this helps a bit and good luck, Lee.

Barbara's February 26 reply to Fred D's February 25, 2002 - Hi, Your note was great Fred, as was Tom's. Congratulations to you both on having such a wonderful attitude. Most importantly, thank you so much for sharing your thoughts with all of us. For me, it makes a difference and really helps. May the road rise to meet you.

Audrey M, February 27, 2002 - Hi, I was recently diagnosed with dilated cardiomyopathy. My ejection fraction is 15% with marked dilated left ventricle with severe depression of contractility, also some regurgitation. I have put on a lot of weight (40 pounds in 6 months). Is that due to the myopathy? I quit my meds, I don't feel sick. What do I have to look forward to? Also, what is a bad ejection fraction? Is lower better or higher?

Jacky, February 27, 2002 - Hi everyone, I have read so much about cardiomyopathy the last few weeks I am tied up in knots! I think I am looking for info that tells me I do not have DCM and that nothing is wrong. Talk about denial! Not to the point of not taking meds though. I feel good so wonder I wonder how this can be. I am 67 and have just discovered that growing old gracefully (something I always planned to do) is acceptance, but I find it hard to accept this diagnosis. I needed to talk about how I feel. Thanks! I do have a practical question. With an ejection fraction of 35% how often should I have an echo? I keep thinking if I have another one, my EF will have risen and I'll be okay, Jacky.

Joe S, February 27, 2002 - Hi, I need some advice. Yesterday I had an angiogram (cath). It did not go well because their instructions for a blood panel on Monday and the angiogram on Tuesday both told me to not take medications. During the angiogram my blood pressure went sky-high and I passed out for about an hour. Oh well, I survived. The results are that my aortic valve is 85% closed because of scar tissue and the artery right below it is 70% closed. The other valves are 45 to 50% closed. I am 63 years old and have opted so far to have both the valve and artery repaired. Should I ask to have the others done too? Does anyone have any suggestions? Joe S.

Claire E's February 27 reply to Tom S' February 20, 2002 - Hi, Greetings to all. I haven't posted in quite awhile but sneak on when I get a chance, to read the posts. I was struck by Tom's post on 2/20. Like Tom, Fred, and probably many of you, I am living my life day by day and not thinking too much about prognosis and stats. It can really make you crazy. There are so many different kinds of days we CHFers have, ranging from absolutely dreadful to days where we may forget we have ticker trouble - well, almost - overdo it and spend 3 days with a "fatigue hangover" as Jon so aptly puts it!
     Good medical care, activity in moderation (I have such a hard time with that one), diet, meds, and stress reduction measures are so very important. I have CM and CHF, hypertension, diastolic dysfunction, and cardiovascular autoimmune disease, all as a result of an infection I contracted while working as an ICU nurse. I have 2 small children, one with severe ADHD and other disabilities, so it can get pretty hairy at times. Thank goodness my SSD came through about a year ago and we are gradually crawling out of the financial hole we had gotten into.
     Two of the most invaluable tools I have found to help me cope with my challenges are meditation and gentle yoga. I started in October and can't believe the difference I am seeing and feeling. I have lost 10 pounds with no effort and wow, had I been struggling with weight loss before this! I am gradually toning up and feel so much stronger now. Best of all, I am calmer, more relaxed, and more confident. My husband (bless that dear man) and kids notice a big change in my demeanor too. I have had CHF for 4 1/2 years now and I only wish I had known about and started meditation and yoga sooner. Even if I am not up to the yoga part I can do the meditation every day. It has really improved the quality of my life and that, as far as I am concerned, is where it's at.

Keith, February 27, 2002 - Hi all, I just want to say this is a great site with lots of great information. I was just diagnosed early last month with CHF and it was quite a shock to me at the time. I had spent pretty much the whole month of December with various symptoms, the worst being SOB. I had problems even walking out to my car, and I would also have periods where my heart would race like crazy and I would feel like I could not catch my breath. My doctor luckily figured out within a week that I had CHF and put me on an ACE inhibitor and sent me to a cardiologist.
     So far my cardiologist has doubled the dosage my ACE inhibitor (Accuretic), and put me on Aldactone (spironolactone). He says that eventually I will be on 4 to 5 different medications. He figured the CHF was caused by my chemo treatments for cancer (non-Hodgkins lymphoma) 12 years ago. I found out through research that people that go through this type of chemo develop CHF approximately 15% of the time, years later.
     I have to say though, that I feel much better, better that I have felt in a long time. I am finding it more difficult than I thought to cut down on sodium. It is in much more food products than I ever would have imagined. Being only 33, I hope my long-term prognosis will be good and I plan to do what it takes to keep as healthy as possible. I just want to say thanks for all the great information, it is really helpful.

Tracey C, February 27, 2002 - Hi Jon, Do you know the ranges for the blood BNP test? Mine came back 509. Thanks.

Jon's February 27 reply to Tracey C's February 27, 2002 - Hi Tracey, here's a paraphrasing of what a very good CHF specialist has told me (any mistakes are mine): The standard upper limit of normal has been listed at about 70 to 100. Further research was presented at the Heart Failure Society meeting on September 10, 2001, indicating that women's BNP level runs a bit higher than men, and that with increasing age the normal level goes up. By the time you're in your 80's the normal range is about 150. This has not yet been published.
     BNP level rises as the pressures within the heart rise. The level can be normal even with a very low EF. It's an indicator of excess fluid in the heart leading to excess pressures. People with stiff hearts that still squeeze well (diastolic failure) can have high BNP levels even with a normal EF.
     It's been reported that getting the level under 400 before hospital discharge is associated with better results after dismissal. One study from England found that levels in outpatients under 200 were associated with fewer new problems and hospitalizations than those who were seen in the offices of primary care docs and had levels running over 200.
     (Jon) My own CHF specialist uses BNP level to help judge level of compensation/decompensation. He says sometimes it's high when he expects it to be low. A low BNP reading helps him be more certain that any problems are not coming primarily from the heart failure.
     I hope this helps. Your BNP level is obviously high and you should talk with your CHF doc as soon as possible about why, and what can be done to more aggressively treat your heart failure. Jon.

Roger Hugh's February 27 reply to Janet's February 8, 2002 - Hi, I noticed you are from central Illinois. Last night I attended in Peoria a presentation by Deb Myers, a heart failure Nurse Practitioner. She gave me permission to give you her telephone number should you need or want to contact her. Here you go: (309) 655-3729. She is with Saint Francis Medical Center, 530 N.E. Glen Oak Avenue, Peoria, IL 61637.

Davida S' February 27 reply to Keith's February 27, 2002 - Hi Keith, Cutting back on sodium can be easier if you start in small steps. Soon after, you will become salt conscious and it will come as second nature. To start, anything that comes in a box, be wary of because every item that comes in a box or can has many brands for competition. So take your time and look at every brand of an item and choose the brand with lowest amount of salt. Most canned veggies have a No Salt Added brand that tastes as good. We do well at my house until we go out to eat but if we have been on our best behavior at home, we don't stress when we eat out. Try Morton's Salt Sense if you have to add salt at home. We have been buying it for years and can't tell the difference. It's real salt not a substitue with less sodium in it. Most importantly my husband was 35 when he was diagnosed and he is now 37 with no clinical signs of CHF so it is possible to reduce or eliminate symptoms over time. The biggest thing you can do is reduce your salt intake as much as possible. Good luck.
Jon's note: I can't find Salt Sense on Morton's web site. Maybe you mean Morton Seasons?

Anita's February 27 reply to Audrey's February 27, 2002 - Dear Audrey, An ejection fraction of 15% is low and is not good, and you need to be taking meds. You need a good cardiologist who will talk to you. There are meds out there now that improve ejection fraction and improve your quality of life. I lived 9 years with dilated cardiomyopathy and congestive heart failure. I eventually had to have a heart transplant but I am doing great. Even before the transplant my quality of life was pretty good because I had a wonderful group of health care providers and I strictly adhered to my medical regime and diet. Don't give up, life is entirely too precious!

Jon, February 28, 2002 - Hi everyone, If I seem a bit absent minded recently and in days to come, I apologize. Between just celebrating my 20th wedding anniversary (yesterday), rewriting all my pages for the upcoming domain, creating a new page on Christian music (Joyful Noise), trying to keep up current pages, and seeking funding while incorporating as a non-profit, I am going in quite a few directions all at once. ;-) If you spot booboos somewhere, please let me know. I need all the help I can get. I am working on getting a very good CHF doc (I know him personally) to sit in on 2 chats a month but have to work out the funding first. It's looking good but takes time. I am also writing a page that will point to specific posts in The Archives (rather than just to a page after a search) that contain exceptionally useful or sought after information, to make those older posts much more useful and easier to access. Stick around! Jon.

Robin Lynn's February 28 reply to Audrey's February 27, 2002 - Hi Audrey, I see you have gotten a post already but I have to put my 2 ¢ in here. You sound as though you are a little in denial. I and most people on this site - regardless of age - know exactly what that feels like. None of us want to be sick and take all the meds and precautions that come with this "blessing" but it is what you have been given.
     I would like to know what meds you were on and why you stopped taking them. Please tell me everything you were thinking when you stopped, and remember that none of the people here know you and likely never will. You can be open and honest here and get your true feelings out. Whatever your reasons are, I can tell you this: You don't have much chance of getting better without your meds. A 15% EF is really low. Mine was 48% the last time we looked, and my bad days come on like "normal" people's flu.
     Forty pounds in 6 months may include an awful lot of fluid. That is a CHF symptom and you realy need medical care right away. Are you finding that you run out of breath quickly? Are you tired doing your regular activity? Can you lie flat on your back on one pillow without breathing problems? Are you swollen or feel full in your midsection? Talk to us, we can help you understand. Mainly, Read The Manual and everything on this site. Please write back here. God's blessings upon you and all, Robin.

Julie G's February 28 reply to Janet's February 8, 2002 - Hi Janet, You didn't say where in Illinois you live. I live in Quincy and I was referred to PrairieHeart Institute in Springfield by my cardiologist. It is quite a drive from here, about 110 miles, but sometimes it is worth it. I was diagnosed one year ago on the 2nd of March. It has been an interesting year learning about myself and how to accept my illness as Satan playing with my faith. If you need someone to talk to, please feel free to e-mail me. May God hold you in His palm, Julie.

Maria's February 28 reply to Keith's February 27, 2002 - Hi Keith, Jon has some good low sodium info and recipes on this site. Also, check out and The first site does have a small subscription fee if you want to access the archives, which are full of receipes but it also has good free stuff. Healthy Heart Market is a catalogue site of low sodium foods for purchase.
     Also, Penzys Spices has an online site that has great salt-free spice combinations. A chef friend of mine told me to add bay leaf to dishes, especially fresh veggies you are steaming or blanching. If you can stay away from processed foods and use fresh ingredients instead of canned or packaged, it will be easier. While it takes more time, cooking from scratch does allow you to control the amount of salt in dishes and lets you spice them up in other ways.
     It is amazing to me how much emphasis is put on low-fat and low-cholesterol products and hardly any on low sodium products. The sodium levels in a lot of low fat products are very high. I hope this info helps you get started. I agree with Divida that going out to eat is the hardest part. There are a lot of good tips on the saltfreelife site about dining out. The man who does that site wrote a book about salt free diets as low as 500mg a day. I wish you luck. Take care, all.
Jon's note: These links and more can be found at the Links Page

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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