The paperwork never ends The Archives
November 1-15, 2001 Archive Index

Cindy H 11-1     flopping feeling in chest at rest
Ben B's 11-1 reply to Jon's 10-31     CCBs for diastolic dysfunction
Jon's 11-1 reply to Ben B's 11-1     CCBs for diastolic dysfunction
Sid Kleiner's 11-2 reply to Jon's 11-1     CCBs for CHFers
Jon's 11-2 reply to Sid Kleiner's 11-2     CCBs for CHFers - a start for now
Ruthie A's 11-2 reply to Ben B's 11-1     diastolic dysfunction treatment outlook
Brenda 11-2     anemia, kidney questions & more
Ben B's 11-3 reply to Sid K's 11-2     CCBs and heart failure
Heidi J 11-3     update
Scott Brown's 11-3 reply to Brenda's 11-2     blood testing question
Frank S' 11-3 reply to Cindy H's 11-1     amiodarone really helped me
Gino 11-3     treating diastolic dysfunction
Autumn 11-3     update, surgery questions
Jon's 11-3 reply to Autumn's 11-3     Biblical advice
Joshua 11-3     update - now have InSync pacer
Bill's 11-5 reply to Joshua's 11-3     Insynch pacer experience (VRT)
Donna 11-5     amiodarone, ICD, docs & questions
Shannon's 11-5 reply to Jon's 10-31     diastolic dysfunction treatment
Roz' 11-5 reply to Autumn's 11-3     perhaps you need counseling
John 11-6     seek SSD experiences
Autumn 11-6     I don't think so & more
Jon's 11-6 reply to Autumn's 11-6     uh, you missed the point
Carol's 11-6 reply to Shannon's 11-5     diastolic dysfunction experience
Donna's 11-6 reply to John's 11-5     I'd like to talk
Sheryl's 11-6 reply to Autumn's 11-5     hugs, if you leave your husband
Lee Roush's 11-6 reply to Donna's 11-5     ICDs, doctors, insurance companies & more
Roz 11-6     explaining my post
Autumn's 11-6 reply to Jon's 11-6     marriage, grains of salt
Jon's 11-6 reply to Autumn's 11-6     marriage, grains of salt
Jon's 11-6 reply to Roz' 11-6     I didn't take it that way
Donna's 11-6 reply to Lee R's 11-6     update - good news & more
Jon 11-7     delay in posts
Autumn's 11-7 reply to Jon's 11-6     marriage, compassion & more
Jon's 11-7 reply to Autumn's 11-7     marriage, compassion & more
Debbie D's 11-7 reply to Jon's 11-6     marriage
Jon's 11-7 reply to Debbie D's 11-7     marriage
Gatha E's 11-7 reply to Jon's 11-6     marriage
Lisa R 11-7     pacer question, familial cardiomyopathy
Jon's 11-7 reply to Lisa R's 11-7     pacers, familial cardiomyopathy
Vee 11-7     sodium, fluid retention questions
Jack D's 11-8 reply to Vee's 11-7     sodium in the diet
Gary W 11-8     seek prognosis-getting advice
Jon 11-10     patio roof is done
Vee's 11-10 reply to Jack's 11-7     low sodium diet
Ron 11-10     seek pickled hot pepper recipe (Jack ?)
Frank Smith 11-10     surgery with CHF experience
Jason 11-10     21 with CHF - need to vent a little
Bob F 11-10     Bible messages
Larry's 11-10 reply to Gary's 11-8     doctors and questions
Steve Holland's 11-10 reply to Vee's 11-7     low sodium diet
Steve Holland's 11-10 reply to Gary's 11-8     prognosis, doctors & more
Jon's 11-10 reply to Gary's 11-8     CHFers' prognosis
Loretta D's 10-11 reply to Jon's 11-10     CHFers' prognosis questions
Jon's 11-10 reply to Loretta D's 11-10     CHFers' prognosis, my experience
Ben B's 10-11 reply to Jon's 11-10     CHFers' prognosis
Walter K 11-12     doctors & prognoses
Karen K's 11-12 reply to Loretta D's 11-10     prognosis & coping
Donna's 11-12 reply to Loretta D's 11-10     prognosis & living with CHF
Pat M 11-12     over-exertion - anyone else?
Jon's 11-12 reply to Pat M's 11-12     over-exertion & more
Tracey C 11-12     dietary sodium restriction
Jack D's 11-12 reply to Ron's 11-10     pickled pepper rings
Diane P 11-12     hospital stay, moral of story
Jeanette W's 11-12 reply to Jason's 11-10     being diagnosed young with CHF
Jack D's 11-12 reply to Vee's 11-10     dietary sodium restrictions - my experience
Donna ? 11-12     living with CHF questions
Jon's 11-12 reply to Donna ?'s 11-12     I hope others also reply
Brenda's 11-12 reply to Loretta D's 11-10     prognosis & living with CHF
Sid K 11-12     has anyone used this herbal product?
Mike W's 11-12 reply to Sid K's 11-12     about that herbal product
Sid K 11-12     does anyone take Tricor?
Jack D's 11-12 reply to Sid K's 11-12     about that product
Ben B 11-12     Silver page, bios, old-timers
Jon's 11-12 reply to Ben B's 11-12     Silver page, old-timers
Eris 11-12     how often do you see your docs?
Tony T's 11-13 reply to Sid K's 11-12     curious about your side efffects
Davida S' 11-13 reply to Vee's 11-7     salt intake
Vee's 11-13 reply to Jack's 11-12     dietary sodium intake
Jon's 11-13 reply to Vee's 11-13     dietary sodium intake tips
Anthony P 11-13     leg pain
Jon's 11-13 reply to Anthony P's 11-13     leg pain
Davida S' 11-13 reply to Debbie D's 11-7     marriage
Jon's 11-13 reply to Davida S' 11-13     marriage
Cathleen 11-13     why would my doctor say this?
Davida S' 11-13 reply to Jason's 11-10     making it past diagnosis
Jeanette W 11-13     why no tattoos and roller coasters?
Judith L Cox 11-13     diuretic questions
Sid K's 11-13 reply to Tony T's 11-13     drug side effects & more
Sid K's 11-13 reply to Mike W's 11-12     web sites promoting snake oil
Karen K's 11-13 reply to Jeanette W's 11-13     tattoos
Sid K's 11-13 reply to Jack D's 11-12     web sites promoting snake oil
Steve Holland's 11-13 reply to Jeanette W's 11-13     tattoos & roller coasters
Cheri S 11-13     why no refill from doc?
Jon's 11-13 reply to Cheri S' 11-13     refills and doctors
Jack D's 11-14 reply to Sid K's 11-13     web sites promoting snake oil
Jon 11-14     new ACC/AHA stages classifications
Jeanette W's 11-14 reply to Cheri S' 11-13     get a new doc!
Jeanette W's 11-14 reply to Judith C's 11-13     you should see your doc
Fred D 11-14     disability payments and taxes questions
Sid K's 11-14 reply to Jack D's 11-14     thank you for your opinion
Sid K's 11-14 reply to Cheri S' 11-13     free samples are helpful as spares
Mike W's 11-14 reply to Sid K's 11-13     web sites selling snake oil
Karen D's 11-14 reply to Cheri S' 11-13     refilling prescriptions
Davida S' 11-14 reply to Fred D's 11-14     disability payments and taxes
Jon 11-15     posts will be late today
Joe S' 11-5 reply to Fred D's 11-14     Disability and taxes
Rick M 11-15     lower Coreg doses, drug side effects & more
Scott Brown's 11-15 reply to Cheri S' 11-13     med refilling, Coreg & fatigue
Bernie's 11-15 reply to Jason's 11-10     coping with CHF
Ben B's 11-15 reply to Davida S' 11-14     disability payments and taxes

Cindy H, November 1, 2001 - Hi everyone, I want to thank everyone who has e-mailed me. Your letters have been both comforting and informative. It is helping so much to know that I'm not the only one in this boat. I have a question. For the last few days I have been experiencing a "flopping" feeling in my chest. Night before last, it lasted a good hour, causing me not to sleep. I have felt my pulse in my neck, and during the flopping feeling, my heart didn't beat it's regular rhythm. It got much slower and much stronger, then it would go back to normal. I had had no stimulant of any kind, and I have noticed that this occurs when I am at rest. Do any of you experience this? Thanks for any imput you may have. Your friend, Cindy H.

Ben B's November 1 reply to Jon's October 31, 2001 - Hi, It seems to me that diastolic dysfunction (especially in the elderly) is a big enough problem that somebody ought to undertake some larger scale clinical trials regarding treatment in general, including CCB's. I believe the only true way to evaluate effectiveness of a medication is through double-blind placebo controlled experiments. Anecdotal stories are of course important for information, but I do recall that conventional wisdom was that beta-blockers were not good for CHF, then along came Coreg. I would hasten to add that I have seen countless stories of negative experiences with Coreg, but the trials prove that these are statistically in the minority, otherwise it wouldn't be approved for use in heart failure. I have no vested interest in CCBs and I know nothing about them except what I've read on the Internet. I would hate to see the delay in a potential treatment because of the "stuck in the mud" attitude of the present medical establishment. I see some mention about small studies, including:
     "In a five-week, double-blind cross-over trial conducted in 1990 by J.F. Setaro and colleagues, 20 elderly men with isolated diastolic dysfunction were treated with verapamil or placebo. In those receiving the drug, symptoms improved, exercise time increased 33%, peak left ventricular filling rate increased 30%, and heart rate decreased 10%."
     However, I haven't seen any large studies mentioned, so obviously I don't know any better than anyone else whether they work or not.

Jon's November 1 reply to Ben B's November 1, 2001 - Hi Ben, I am going to look like I am arguing here, but that is not my intent. I just want to point out some relevant facts. I am concerned about people taking CCBs for diastolic dysfunction and I should explain some of my reasoning. I want anyone who can be helped to be helped but I don't want to recommend something that ends up torpedoing people's lives, either. It's a fine line with unproven treatments every time. I agree to some extent with every single thing you say, but my agreement is leavened with knowledge of the following:
     First, as much as it pains me to say this, the "medical establishment" has good rason to be cautious. Inotropes killed a lot of people with heart failure 10 to 20 years ago because the drug class looked so promising and made people feel so much better. Then, however, people started dropping like flies, and doctors realized they had unintentionally made a lot of patients die a lot sooner than should have happened. Vesnarinone is another case in point that happened so recently that I was in the trial and was taking the highest dose. By the grace of God, it didn't kill me. It did shorten the lives of a lot of CHFers, though.
     Second, CCBs (except for amlodipine) are already proven to have an adverse effect on people with systolic problems and many people with diastolic dysfunction also have systolic dysfunction to some degree (or will develop it), so how do you select the patients the drugs will help, rather than hurt more than they help? This is a really tough spot for a doctor to be in.
     Third, older studies - and I mean any studies before 1998 - probably do not have CHFers that are participating in the trial taking the drugs we take today: ACE inhibitors, beta-blockers, and spirinolactone. Studies after 1998 usually "add-on" the new drug so it's a more real-life situation. Obviously we will keep taking the drugs that prolong our lives and make us feel better when trying a new one, so a trial of any new addition must use it as an addition or interactions do not show up. One such interaction might cause early death and we'd never know unless the trial was set up as "add-on" therapy. So, I tend to view the older trials with some suspicion.
     Fourth, diastolic dysfunction was thought to be very rare until just this year! That's why no one has devoted a lot of time and study to it. It seems to occur mainly in the elderly, so trials will focus on that age group, making it doubtful that younger people with the problem will be studied at all.
     Finally, drug trials are horrendously expensive and unless a drug maker thinks his drug will be especially suited to treating diastolic dysfunction, he won't spend the zillions of dollars required on large trials. More research on the basic level is needed to determine which drugs stand a chance of making it through the road to approval. It's too slow a process, I agree, but I also don't see any way to improve it anytime soon.
     The fact is that any patient in the US can ask his doctor to prescribe any drug for anything at any time. "Off-label" prescribing is not a crime in this country (that means prescribing a drug for a condition the drug is not FDA- approved to treat - as long as the drug is FDA-approved for something). So, if you are willing to take the chance and think a benefit awaits you, talk to your doctor even before trials take place. It's your life. Just be careful, please.
     My main concern about CCBs for diastolic dysfunction is that life span will be shortened so much that the small improvment that may be felt by the patient won't be worth it to them. It's the patient's perception that counts in the end, every time. There is a strong possibility that CCBs will end up helping a lot of people with diastolic dysfunction, but which drugs at what doses in which patients, if they help at all? Whew! I sympathize with the docs sometimes, ya know? ;-) Jon.

Sid Kleiner's November 2 reply to Jon's November 1, 2001 - Dear Jon, I read your statement that calcium channel blockers may shorten a CHFer's life. I cannot seem to find the documentation I need to show my doctor that this is so. Can you tell me where to look to find and copy documentation that calcium channel blockers can shorten the life of a person with CHF? I am being treated at the Cleveland Clinic and I need to substantiate the reasons for my grave concern about taking Norvasc each day. Thanks a lot, Jon, Sid Kleiner.

Jon's November 2 reply to Sid Kleiner's November 2, 2001 - Hi Sid, In my previous message to Ben you'll see that among calcium channel blockers, amlodipine is the only one shown to be neutral in its effect on mortality in CHFers. This is documented on my site at However, see for a start on the risks of CCBs for CHFers with systolic dysfunction. (Note the disclaimers and warnings at I will be posting more complete info (as I said earlier) and have gathered some already but I am about to head for my CHF doc's new location for my yearly once-over so I can't get on it right now. Sorry, but it won't be too long, I don't think. :-) Jon.

Ruthie A's November 2 reply to Ben B's November 1, 2001 - Hi Ben, I was about to write a post and decided to read Jon's comments first. He rained on my parade by saying what I was going to say! <g> However, I do have a comment or two to make.
     I am very interested in the medical community's progress in treating diastolic dysfunction, primarily because I suffer from it. My CHF doc regularly sends me medical journal articles that discuss the latest papers and research developments. Only a year or so ago, CHF specialists agreed on diagnostic protocols for diastolic dysfunction. Up to that point, it was hit-and-miss guessing for each patient. Now that there are ways to diagnose this illness, the next step is to see what current medications provide the best treatment protocols.
     Although research is concurrently ongoing, new medications are down the list of priorities at this point. They have to figure out what works now to better treat the patients they have now. The rest will come in time. I am only 50. I was diagnosed with diastolic dysfunction 4 years ago and in that time I have seen several new drugs come on the market. However, they had been in research and development for many, many years.
     Perhaps in 10 or 15 years we can have a better discussion on trials and efficacy of new drugs for diastolic dysfunction. Unfortunately, that won't help me or anyone else right now, which is when we need the help. Again, for what it's worth, Ruthie A.

Brenda, November 2, 2001 - Hi, Has anyone out there with CHF had kidney malfunction? My mom's kidneys recently malfunctioned. She was hospitalized and it was corrected. Today we had a follow-up appointment and were told that the anemia problem she now has could have been a result of the kidney problem. Does anyone agree with that?
     About 4 weeks ago (before the kidney discovery), while they were tring to find out what was wrong, she saw an oncologist who said her blood count was low (10.5). Although the cardiologist didn't mention the count seemed low, the oncologist started giving her procrit and iron. Upon being discharged from the hospital her blood count was okay. Now 2 weeks home and a trip to the blood doc and her count is low again (11.4) and of course he is treating her with procrit and iron. This doc also said the creatine level and BUN level are indicators of anemia. Any thoughts on that?
     Is she just developing more symptoms that she has to deal with? If so, how often should she have her blood count checked? And, are her kidneys going to malfunction again? We are working at finding another CHF specialist for her. I appreciate any info anyone has for me.

Ben B's November 3 reply to Sid K's November 2, 2001 - Hi, If you have grave concerns about taking any medication it probably isn't healthy to take it from a psychological point of view. However, I want to point out that the Cleveland Clinic has a pretty good reputation, so I would hope you can trust the doctors there or you would change doctors. This goes for any doctors; If mine tried me on a medicine that I came to a conclusion was harmful I would sure change if I could.
     Additionally, I don't know why you would have this grave concern, because as Jon says, Norvasc has been shown to be at least neutral for people with systolic disfunction (it is brand name of amlodipine).As a matter of fact, in the study Jon quotes, the first half (PRAISE I) showed a benefit, which was not confirmed in PRAISE II).
     I know most CCBs have bad effects for systolic function but we're talking here about diastolic dysfunction, so I don't see the problem in at least having a doctor consider it from this angle. These are not new medications, they are old blood pressure meds. From what I read, one of the main things they try to treat in diastolic dysfunction is the underlying cause. If you don't have high blood pressure, these meds may not work anyway.
     Remember as is stated constantly, nobody here is a doctor, including me. With that, I give up on my discussion of CCBs. I don't have diastolic dysfunction and I don't really know why I care about checking this stuff out. I'm just trying to suggest helpful things for others to check out with medical professionals. I can see I'm outgunned on this one, as usual. <lol>

Heidi J, November 3, 2001 - Hello Everyone, I first want to let you know my e-mail address is no longer My new address is I have not been able to visit your web page since the death of my father in March of 2001. My dad successfully lived with his new heart for 13 years after his heart transplant. Like my father, I was diagnosed with CHF - idiopathic dilated cardiomyopathy. After my own diagnosis I found your web site very resourceful.
     Just an update: Toward the end of 2000 my husband and I intentionally made life changes to accomodate my CHF. For example, we now live in a townhouse, I no longer drive a standard but the comfort of an automatic transmission vehicle, and I changed job positions because I needed a work environment that was laid back. As far as my own health status, my recent doctor's visit reflected that my heart enlarged by 5 ml and my ejection fraction dropped to 40%. I hope Jon, you and all your readers are well, Heidi J.

Scott Brown's November 3 reply to Brenda's November 2, 2001 - Hi, Regarding how often blood should be checked, when I was first diagnosed and put on medication, I went for blood tests weekly the first month. Now, it is bi-weekly while my meds are being increased to my tolerance. Once I am up to dose, I think it may be monthly. I'm not sure how this compares to others. Is there a hard and fast rule?
Jon's note: For a stable CHFer, once every 3 months

Frank S' November 3 reply to Cindy H's November 1, 2001 - Hi Cindy, I just happen to see your question and it immediately reminded myself of several episodes I have had over the course of several months. I would experience the same "flopping" in my chest that would last anywhere from just a few seconds to almost an hour. It wasn't until my ICD shocked me twice in my back yard that I found out what was happening.
     Interrogating the ICD showed that I had gone into SVT approx 280 times over the course of only 3 months. I consulted my cardiologist at Johns Hopkins' and was told this was expected. I'm currently waiting for a transplant. He started me on amiodarone (Cordarone) and it has worked wonderfully. Since starting I have had that fluttering only once or twice in 3 months and my periods of dizziness have virtually disappeared. I hope this might help you. I'm not sure about all your history but it might be worth looking into. Take care and feel free to e-mail anytime.

Gino, November 3, 2001 - (Jon's note - Gino is a CHF specialist in Italy) Ciao, I missed a lot of time from the forum. I would say a couple of words about "diastolic" CHF. About diastolic CHF therapy: There is a lack of standardized ways to diagnose it and there are no controlled clinical trials (the only exception are 900 patients with an EF under 40% enrolled in the DIG trial for the evaluation of digoxin in this kind of CHF. There are some ongoing clinical trials, that are evaluating the role of ACE inhibitors in CHF with preserved systolic function: the CHARM study and PEP study.
     About diuretics and vasodilators (nitrates), these are useful but require more attention because these heart are "stiffer" than normal and an excessive loss of fluid in the vascular bed due to an high dose of diuretics may worsen the symptoms (SOB and fatigue and even syncope [fainting]).
     About calcium blockers, your doc is right. These drugs are useful overall if diastolic CHF is a consequence of a long-lasting hypertension (high blood pressure). If there is a fast cardiac rythm (or atrial fibrillation), beta-blockers are useful drugs. (E-mail address withheld by Jon)

Autumn, November 3, 2001 - Hi, I haven't posted for awhile. I have had a real struggle getting insurance to aprove treatment for my apnea, and finally succeeded. It made a wonderful difference in my life. My sleep improved, numerous nightly trips to the bathroom stopped, my energy improved, and I stopped having bouts of tachycardia at night. Life was really looking up.
     Then a week ago I got my mammogram and it showed a one inch by 1 and 1/2 inch mass. I had an ultrasound which shows it is not a cyst. I had compression/computerized x-rays but don't have any results yet. I'm sure it will take a step by step process to learn whether it is cancer or not. What concerns me even more than whether or not it is cancer, is if it is cancer, can I even be treated for it with my heart disease? I've read that chemo or radiation can cause CHF even for healthy people. What happens if you've already had heart failure? I've already been told I cannot have the spinal fusion I need for my back because they think I would not live through the surgery so would breast surgery be out too, or is that not as complicated as back surgery?
     All the diagnoses I've received this past year have made it a difficult struggle to keep my chin up, and now this has gotten me fairly depressed, although I am trying to get my footing again. My husband and I are not talking the last couple of days because he chose to go out to play darts instead of being willing to be here the day I got my ultrasound results. It was not a matter of his just being unable to handle it - he just didn't want to miss his dart night. Actually, it is probably better we are not talking because now I only have to deal with the cancer possibility and I am using the time to do some thinking about what I need to do about taking care of myself, like making improvements in my diet, mood, and expectations. It also gives me time and space to think about what I want to do about our relationship since he isn't very supportive and undermines my efforts to take care of my health in any way. I know I am responsible for taking care of my diet and health, but struggling against his constant undermining takes a lot of energy that would better be used to more fully succeed at my diet, etc,...
     I am really realizing that he will always be the way he is and it's up to me to get strong enough where he doesn't drag me down, or time to say good-by. I know that even though all this stuff gets me down I am becoming stronger.

Jon's November 3 reply to Autumn's November 3, 2001 - "Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself. Sufficient unto the day is the evil thereof. Matthew 6:34 Jon.

Joshua, November 3, 2001 - Hi, Just a report that I had VRT with an ICD implanted on Halloween, full moon and all. The procedure took about 3 hours. Right now, I feel like I've been shot in the left shoulder. It is too early to tell how well it's going to do, but it is nice to have a regular heart beat, one that you don't constantly feel. Also, I do believe my kidney function has improved with the increased blood flow. It was tough getting the blood to stop at the incision site, and I have one degree of fever, which is expected.
     I think that my condition will improve with this device. I was able to get into a study that combines the Insync pacer with the ICD by Medtronics. Thanks Jon, for your site and the info it provided. Thanks Mam and Pat L for answering my inquiry, and encouraging me. It is my understanding that the Insync is expected to become used by quite a few CHFers. God bless you all, and may you feel well, Joshua.

Bill's November 5 reply to Joshua's November 3, 2001 - Hello all, I also have a Medtronics VRT pacer/ICD. It was implanted September 5 and like you Josh, I was the most uncomfortable for the first week or two after the procedure. Since then I have been steadily improving and feeling better each week. My cardio-doc put me at the low end of class 3 before my implant. He now thinks I am at the top end of class 3 and maybe even on the edge of class 2. The pacer doc and the reps from Medtronics that I saw to check the programming on the device at week 3 have told me that I may not see the full benefit for another month or so (end of month 3).
     I started a water excercise program at the local YMCA the beginning of October (low impact for seniors and rehab) and I am doing a few laps of the pool before and after class now. I am starting to see real benefit from the regular exercise. Besides, swimming in the heated pool just makes me feel better overall. I have less muscle aches. I am able to climb the stairs in our home without having to stop and catch my breath halfway up and can walk for much greater distances when we go out shopping. Our family life has improved because I have more energy to do things with my wife and children. I even attended a local college football game in the past month. (Go OSU!) That's something I would never have considered doing a few months ago.
     For anyone else considering this, if you meet the requirements it is well worth the effort. I started talking to my cardio-doctors about this device 8 months ago and really had to be my own advocate in the beginning, but now that they see the results, I think they are convinced and are seriously looking at more of their CHF clients. Hang in there Josh, life is getting better.

Donna, November 5, 2001 - Hi all, Thanks everyone for sharing. I read the posts all the time, for over 2 years now. I have only posted once I think, but I sure enjoy all the information here. I did buy the book by Dr. Silver the other day. I have been wanting to get it for over 2 years now and finally did it. I am anxious to get it. My husband and myself both have CHF so it will be well worth having in this house!
     He just had a 4-way CABG July 12. After the cardiologist did an angiogram he came out and told me that my husband was hopeless and that they couldn't do anything for him because his heart was too weak. He said he would send a surgeon to talk to me but he didn't think the surgeon would touch him because his heart was not strong enough to go through surgery. Well, the surgeon did the surgery and my husband is still here.
     He has been having serious problems with the medications this doctor put him on. His first problems were with Coreg. He has suffered all his life from low blood pressure (75/40 and even lower) and I told the doctor this when he put him on it. Well, he started falling down 2 and 3 times a day and it was from the Coreg, which was lowering his pressure too much. Then the doc put him on amiodarone (Cordarone) that seemed okay for awhile, then he started having problems with his vision and went almost blind. He got dizzy, started coughing, and was very unsteady on his feet.
     We went to the family doctor after researching here on Jon's Place (thank God for this site) about this medication. The family doctor asked when his next visit was with the cardiologist and we told him in 5 days. He said to stop the medication and tell the other doctor he said to, and if he wanted him back on it he could put him back on it. He also said that amiodarone stays in your system for a couple of months. Well, needless to say, the cardiologist took him off because of the side effects. Now, he doesn't have any medication for arrhythmias. They were putting him on medications so they wouldn't have to do an ICD because it was too expensive. I am so frustrated. I think they are just trying to avoid the cost of the ICD because of his age (72) and how the HMO will look at it. His last heart attack (his second one) was in May of this year and he was in V-tach when the ambulance arrived. I am so afraid that it will happen again without medication or an ICD. Just what do you have to do to convince these doctors of the need for this?
     Myself, I have been having a problem since August waking up in the night gasping for air, with chest pain almost constantly. Finally the doctor put me on Toprol-XL and Lasix. Boy, what a difference! No more chest pain and I sleep through the night now with no breathing problems. He didn't want to give me anything. When I had my heart attack in February of 1999, I also had a brain stem stroke and a brain bleed (cerebral hemmorhage) so every problem I have he tells me it's from the stroke. I have always loved this doctor but I am beginning to believe Jon now and maybe we should both get a CHF doctor.
     My husband has a 25% EF and I have 35% EF. He is going for an echo on the 6th to check his heart function and we will make a decision at that time. I don't want to wait until one of us dies! Thanks all for listening, Donna.

Shannon's November 5 reply to Jon's October 31, 2001 - Hi Jon, I was diagnosed with diastolic dysfunction 3 years ago at age 41, caused by high BP. My meds include a CCB (verapamil), diuretics, beta-blocker (Toprol-XL) and an ARB (Atacand). I was told that it was a fairly common occurance in the elderly but somewhat unusual in my age group.
     I was told the CCB does 2 things for diastolic dysfunction;; slows the heart rate down to allow better ventricular filling and allows the heart muscle to relax. I have not really seen an improvement in my symptoms but have not seen them get worse either. By the way, I have good systolic function. I agree that diastolic dysfunction is sort of misunderstood and is probably under diagnosed, as well. Take care, Shannon.

Roz' November 5 reply to Autumn's November 3, 2001 - Dear Autumn, Your post touched me deeply. I hesitate to criticize Jon for anything but I think his response could send you into an even deeper depression. There are times when St. Matthew's advice is most appropriate. I frequently advise against "pre-grieving" too (fearing for a future about which nothing can be done). This is not your case. You need some really good discussions with a professional trained in the field of illness, depression, and family interactions. You have things to do about your future and they are of such importance that you should have the help of intelligent, caring, trained people to help you make the right choices. In the meantime, I offer here an untrained ear, a comfortable shoulder, and as much of a hug as this cold print can bring you. I hope this day finds you grittily hanging in there. With love, Roz.

John, November 6, 2001 - Hi, I just recently was approved for SSD after the administartive law judge hearing. I'm just curious if anyone out there could give me an idea of how long it may take before I actually see my desperately needed first check. Thanks, John.

Autumn, November 6, 2001 - Hi, When I first read Jon's note I was taken back and hurt, but I paused to think. There is certainly enough to worry about in the present without worrying about tomorrow, but then I paused to think. Today, especially with something like this, is tied into tomorrow. It is very human to be concerned about these issues. On my mother's side my grandmother and aunt were diagnosed with untreatable fast growing breast cancers, and on my fathers side my cousin was diagnosed with it. I have already had both ovaries out because of borderline cancer and have had abnormal cells in my vagina. I have had calcium deposits in my breasts for many years, and have had surgery for necrosis. I am relaying facts here, not expressing uncontrollable concern. I am definitely concerned but I think I am handling it fairly well, especially considering that I have been handling it alone. I am human. These things are not easy to handle, but through the course of the past year I have become stronger, and less afraid of dying. I don't want to die and I do worry that I won't be able to be treated if I do have breast cancer, and thus will not have a chance to live. I'm sure anyone here would feel worry and loss if they could not be treated for their heart disease, or any other disease they may have. I make my peace more all along the way that I may not have long on this earth, but that does not stop me from hoping, and yes, doing a bit of worry too. I strive to keep my mind and heart in today, and if I did not have at least some success in doing so I think I would have lost it the last week or so, what with this issue and the situation with my husband.
     I usually like to talk things out right away, but with all the things going on I told my husband that I needed not to talk to him for a few days to think things through and get some balance on the cancer, his behavior, and what changes I wanted to make between us. Thankfully he allowed me the space to do so, and I think it was very productive for both of us. Standing alone and thinking it through I feel stronger than I ever have. I feel closer to God and more at peace. When my husband and I did talk he was able to express to me that he feels he can't express how he feels about all this because he feels he'd then be burdening me, and so he just has to get out and get a release, which for him is darts. He also reminded me that I have a crisis counselor I'm going to, and his counselor canceled till January first. So, he felt great need to go to darts. For the first time in 30 years of marriage he expressed his feelings to me. I am learning that for most of us life is very hard but there are blessings along the way. This past week or so when things were so tough I was surprised by a number of very unexpected blessings along the way. These blessings have made me feel touched, cared for, and watched over by God. Jon and Roz, I thank you for your caring. Some just have a better way with words than others when it comes to stuff like this. <g>

Jon's November 6 reply to Autumn's November 6, 2001 - Hi Autumn (and Roz), I forget that people don't know Bible verses in context. I should know better by now. Bear with me for a moment and break out the Bible and try reading Matthew 6.
     Autumn, Jesus is speaking about priorities, not about ignoring reality. His whole life is dedicated to how we can better deal with reality, after all. Jesus was speaking very specifically about how people in need - often great need - should change their priorities to get what they really need. I honestly don't see how you could feel hurt or go into defensive mode over Matthew 6:34. I think it is some of the best advice you could possibly hear right now, so I give it again. ;-)
     By your own words, you are reaching inward, even separating yourself from your own family at times. Peace may be eluding you; People at peace tend to reach out and share. I've been married a long time now and I cannot imagine considering "what changes I wanted to make between us." Marriage is a joint venture. People at peace don't think about the "I" so much as the other person, especially in marriage.
     This is just my 2¢ worth, not intended to be what you want to hear. Jon.

Carol's November 6 reply to Shannon's November 5, 2001 - Hi, I was diagnosed with diastolic dysfunction in January. I was having chest pain and shortness of breath. My doc thought I had a blockage but there was no blockage. He said I had diastolic dysfunction and a stiff heart. Now, I don't understand why I have this. He had been treating me for years for MVP, and PVCs. I was already on CCBs and Toprol for arrhythmia and now he wants to put me on Accupril but I have yet to take it.
     My symptoms are still with me, sometimes worse, sometimes better. This past week was so bad I went in to get checked. My cardio-doc was out of town so I saw his associate, who is the one that put me on the CCB in the first place. He said to get off the CCB and start Accupril. He said I can reverse diastolic dysfunction with the right treatment, losing weight, exercising, and taking the right medication. Of course, I'll discuss this with my current doctor and see what he thinks.
     My doctor said most of his diabetic patients have diastolic dysfunction. He doesn't know what caused mine. I don't have high blood pressure, I'm not diabetic and I'm only 50 years old. The only thing he can think of is maybe because I am overweight. My EF is normal. My regular doctor seems more concerned. The second doctor was more upbeat, gave me more hope, and said my heart is functioning fine.

Donna's November 6 reply to John's November 5, 2001 - Hi John, I am more than glad to reply to you. I am glad you asked to talk to me. It has been almost 2 years since I have been on this site and I will be more than willing to talk about my disease since you have gone through the same thing. Please feel free to contact me at my e-mail. I would love to talk, Donna.

Sheryl's November 6 reply to Autumn's November 5, 2001 - Hi, How awful for you to now face the unknown about your lump. I have had 2 removed and both benign, but that was pre-CHF. Even worse is that your spouse is so unsupportive. Life can be so unfair. If you should consider leaving your hubby, be aware that if you chose to be a stay at home mom (did not work outside your home) and if you end up on disability, SSD only takes your life time salary into consideration no matter how long you were married. It is not like retirement where you get some of your husband's Social Security. In other words, you will starve. Best of luck to you and keep a positive attitude that the lump is benign. A big hug for you,

Lee Roush's November 6 reply to Donna's November 5, 2001 - Dear Donna, I hate to be so blunt, but please get rid of that cardiologist. There are things that can be done for your husband. If he has a serious arrhythmia he should be a candidate for an EPS (electrophysiology study) and if that shows the need for an ICD, the insurance company will have no way out as far as I know. There are specific reasons to implant an ICD; age and cost have nothing to do with it. It is a shame that we have to battle with insurance companies too, but unfortunately, sometimes that happens. You really have to be proactive about this, Donna. It sounds like your physician is too interested in "containing costs" thereby increasing his reward from the insurance company.
     If you need more help, I will look up the specifics for you on why they implant ICDs, or anything else you might need. A good place to start is Jon's ICD section. Also Medtronics and Guidant have good web sites. My own doctors have a good site at They are from St. Luke's Roosevelt in New York.
     From personal experience with an ICD for 3 years now I can tell you that it has saved my life 4 times and has also brought a too-fast heart rate under control with its standard pacing feature. So in some cases, the gadget has actually saved me from a shock. I do not need anti-arrhythmic medication because 4 shocks in 3 years is not considered too many. Donna, good luck to you and your husband. I hope this will be of some help. Bestest,

Roz, November 6, 2001 - Dear Jon, Unintentionally my poorly scribed note to Autumn seems to criticise you for advising that she not pregrieve. Of course she must wait for a diagnosis. I was addressing the sadness I felt in her post, her need for a friend to advise and counsel. She turned to us for answers. I wrote her personally with anecdotal info on my surgery for a condition unrelated to my CHF. I hope others will send her the sort of support your wonderful site has provided. Thanks again for it, Roz.

Autumn's November 6 reply to Jon's November 6, 2001 - Hi Jon, I very much agree with you that ideally marriage is a joint venture. In marriages that are not, it is sometimes necessary to reach inward because it has not been safe in the past to reach outward. It is not the way I'd like it to be, but a matter of necessity. I do appreciate your input. I do not take what you have to say with a grain of salt. That would be foolish, as you have a lot of good stuff to say. I listen and apply what I can to my life, and find peace as I can. God Bless.

Jon's November 6 reply to Autumn's November 6, 2001 - Hi Autumn, You should take my advice with a large grain of salt, just as everyone should do with all advice received from others.
     I doubt that there is such a thing as an ideal marriage. It's hard work day in and day out to keep it the team effort it must be so that spouses can talk to each other about anything and everything. Skip a single day keeping the lines of communication both open and active, and it's very hard to make it up. Taking a few days off might never be repaired. That's how I see it anyway. I almost ruined my marriage once and have never spared any effort since to keep it well oiled. That experience gave me a bit of insight into why many (not all) marriages fail. It often seems to be unwillingness to make the effort - an effort that can terribly difficult to make because it usually requires a large dose of humility. That was the hardest part for me to learn. I now make it always about us, never about me. Always. Because it is.
     If I sound terribly blunt, it may be because I keep realizing that people refuse to talk bluntly and plainly to me because I am the Jon of Jon's Place. I am just an opinionated little feller with CHF and a bad memory. Don't bother treating me with kid gloves just because I run a web site. ;-) Jon.

Jon's November 6 reply to Roz' November 6, 2001 - Hi Rozaroo, I didn't see anything in your post as a criticism of me, although I think you misunderstood the Bible verse as I explained to Autumn earlier. Your message to her seemed just aimed at her as far as I could tell. I included you in my reply to Autumn because it was a 3 person thread to date. If people keep apologizing or over-explaining posts just because they might have raised my dander though, I'm gonna puke. ;-) Jon.

Donna's November 6 reply to Lee R's November 6, 2001 - Hi, Thanks Lee for your encouraging post. We are going to look for another cardiologist. Today my husband went for his echo and later this afternoon the doctor's office called with the results. My heart was pounding as I thought he was going to want to see him in the office but the nurse said it was good news. His EF went from 20-25% up to 30-40%. She said the doctor said to tell him that he went from severe to moderate! He is not on any heart medication except for digoxin (Lanoxin). He does take Lasix every other day but only 10mg. We are still going to look into a new doctor because I am very concerned about the arrhythmias. Thanks again. I am feeling a lot more in control today!

Jon, November 7, 2001 - Hi everyone, Sorry for the late posts. I am in the process of assisting some cabinetmaker buddies who are repairing my porch roof and it looks to be a 4-day piece of work. The porch has been held up by 2 x 4s to get it to survive this far so we framed a temporary support, cut all the beams out, shimmed it into plumb, and started removing old concrete today. Now it really gets fun - not! <g> Jon.

Autumn's November 7 reply to Jon's November 6, 2001 - Hi Jon, I meant what I said, and yes I was trying to treat you with kid gloves because yes, you are the Jon of Jon's place. So, off with the gloves. <g> Everything is not black and white. What works for one marriage might not work for another, and may actually make matters worse. I tried to put things delicately in my last post but things have gotten pretty bad here in the past, and one is entitled to self preservation. That is not selfish. That is just common sense. Sometimes it is just better to take a breather so things do not escalate. Sometimes giving and taking the necessary space is the most loving and caring thing a person can do. Jon, I'm sure you know that there are many marriages out there that go far beyond the usual run of the mill (tough) marriage problems, yet for some reason those marriages stay together; usually because one partner puts up with far more than they should ever have to, and because they do what is necessary to personally survive while doing the best they can to make things work. Unless one has been in that person's place one cannot honestly judge what is right for another. In all kinds of situations people are prone to apply rigid black and white thinking to others when comprehension and compassion would certainly do the world a lot better. Whether it is marriage, CHF, or any other life decision there will always be someone telling you you are making the wrong decision. Only the one actually in the situation has any chance of knowing what is right for that moment and situation. Anyway, I think we've gotton a little off the mark. Take care, Autumn.

Jon's November 7 reply to Autumn's November 7, 2001 - There now, don't you feel better? <lol> I do see most things as black and white - because they are. Shades of grey are usually an invention of men to justify their going off course because doing what is right seems too hard.
     If constant communication is bad for any marriage, it's not much of a marriage anymore, just cohabitation. However, it was almost certainly better at its start or it would not have happened. Somewhere along the line both participants let the marriage slide in favor of their own desires. That's my view and I see it as pretty black and white, and almost - almost - universally applicable. It's a hard truth that most of us bring our troubles on ourselves one way or another, although not always. It is always easier to blame circumstances or another person than ourself. I do it too but am learning that indirectly at least, I bring most woes on my own head.
     Since you are talking about "self-preservation" (usually a term reserved for physical survival so maybe overstated) inside a marriage, either you have a terrible attitude that needs adjusting or you shouldn't be in the marriage. Black or white, I know. Marriage is sharing - that's its foundation and its strength, not a problem. I disagree entirely with your view of why marriages stay together. If you love a person and honor your vows taken before God, it's not putting up with more than you should - it's putting up with precisely what you promised to put up with. In the end, it can result in a fabulous marriage. Ask my wife. There certainly are reasons to end a marriage but they must not apply to yours since you are still married.
     Life is a series of judgements about our own selves and actions and about the actions and people around us. That's life. People who say a person cannot judge another's actions should think again. Of course they can and do every single day. It helps, though, if people are being forthright. I run into people giving me only a part of their story all the time. Yet they expect me to give advice that helps them somehow. That is not going to happen. You have to give the whole truth as far as you know it to get meaningful advice from anyone anytime. If you sugar coat something or conveniently forget to mention it, you shouldn't expect useful advice or accurate answers to your questions. Be sure not to blame the one answering a less-than-forthright question or situation for giving a less-than-helpful answer. Again, I see it - as most things - in black and white.
     Black and white says that love is the law, but love is a 2-way street. Be sure you are calling for love and not for sympathy and justifications for your own desires. God says that love is doing what is best for another person, not making him feel good and not some vague emotional feeling or even kindness. Love can be painful to experience in the short-term.
     I'll be happy to further discuss it by e-mail. After all, this is primarily a heart forum. I don't mind wandering into other topics at all, but only to a point, like you said. ;-) Jon.

Debbie D's November 7 reply to Jon's November 6, 2001 - Hi Jon, What you say about keeping the lines of communication in a marriage open by talking every day is very true. However, if your spouse is not wanting or willing to talk to you, a person can only take so much ignoring, rejecting, and ridiculing before that person will stop trying to talk to the other person. I know this from experience, and obviously so does Autumn. I can certainly sympathize with her being upset that her husband went to play darts instead of being there for her when she was getting her ultrasound results. Two hours after my father died, my husband went to a Superbowl party with his friends. His rational was that the Superbowl is only played once a year. Well, my father only died once, period, and I could have used a little support at that time. To this day, my husband still doesn't understand why I got upset. The fact that he has given me no support of help since I found out that I have CHF almost two years ago is not surprising. I still work full tim! e, do everything for the children, do all of the housework and yardwork, and then he gets mad at me if I'm occasionally too tired to cook dinner for him. You are lucky enough to have a spouse that cares about you and wants to be a part of your life. Not everyone is, and if you happen to be married to someone like that, you can talk until you are blue in the face, but it won't keep the lines of communication open. Both people must be receptive to that idea for it to happen. Debbie.

Jon's November 7 reply to Debbie D's November 7, 2001 - Hi Debbie, I completely disagree. I have been through this in my own marriage but I was the one unwilling to be a real partner, unwilling to listen to anything at all. My wife stayed faithful and loving, kind and gentle, despite my truly awful (it was very bad at times) behavior that went on literally for years.
     Finally, I came around. If she had not been so long-suffering, always willing to wait me out and talk whenever she saw an opening, never criticizing, just being there and being loving, I would not be here and I would not be married and more in love with her now than ever before. One person can bring about phenomenal change in a marriage that seems sour. It's not guaranteed but it is certainly possible.
     It's like the anger that results from a misdiagnosis that made your heart failure terribly worse than it ever should have been. It is a choice to close yourself off in marriage, just as it is a choice to stay angry at a doctor who blew it in your diagnosis and treatments. That's why I said humility is necessary. Are you willing to humble yourself for another person's good? It boils down to that, really, and that is what marriage is about. You have to step outside your own hurt and your own desires and desire only the good of your spouse - that's what marriage is about - and it can bring marvelous changes when treated that way day in and day out.
     You're both ignoring the high, hard road and looking at how you are affected by a "bad" marriage. It doesn't help you, your marriage, or your partner to look at marriage this way. Black and white, that's me, but I've seen it work. We'll have to take this one to e-mail from here, though. Drop me a line if you'd like but of course, don't expect me to start all of a sudden seeing shades of gray. That part of my life - when I was miserable and unsure and everything was in my mind, relative - is over and now I am at peace and happy, merrily cavorting in black and white. :-) Jon.

Gatha E's November 7 reply to Jon's November 6, 2001 - Hi Jon, Even though I don't post much, I do read every day and you have given some excellent advice on marriage. I have been married 40 years in August and it does involve talking, touching and hugging every single day to make things work. I cannot imagine not having it. Last week I was in the hospital with renal failure and CHF. I probably would not be here today if I had not had my husband's support and love. Things will get rougher, but with support, I can make it and I hope that Autumn gets to that point. Don't puke yet!

Lisa R, November 7, 2001 - Hello, I just found this forum and am happy to have done so. I was wondering if anyone knows if the biventricular pacemaker has been approved yet. Here is a little about me: I am 38 years old. I have CHF due to cardiomyopathy. My EF is about 30%. I have thickened mitral and tricuspid valves, and minimal regurgitation of the mitral. I also have very frequent PVCs. I am currently on my second event monitor (what a pain!). I suppose I take the same stuff as everyone else: Zestril, Coreg and Lasix.
     My father had the same condition and underwent heart transplant at age 53. We lost him last August at age 64 from complications of anti-rejection meds. My 14 year old son has cardiomyopathy as does my sister and her 6 year old son. Our family includes 6 or so members who have succumbed to this disease at various ages from 17 to 64.
     I will look forward to reading your posts in the future. I sometimes feel very isolated in my CHF world. I look normal on the outside and I think people sometimes question why I can't do certain things. I know I hate to tell the teacher I can't go on the zoo field trip when it's 95 degrees outside. I also live in San Antonio which is very humid, and this seems to make things worse. Anyway, that's all.

Jon's November 7 reply to Lisa R's November 7, 2001 - Hi Lisa, Welcome! The VRT pacer has been approved. See this page: Yo might also look into this project: Jon.

Vee, November 7, 2001 - Hi, Just wondering what other people's experiences have been with salt intake and fluid retention. Say you eat a higher sodium than usual holiday meal at 6:00 PM, but otherwise you've stayed on your diet fairly well. How soon and for how long does that transgression show up as increased weight and other symptoms? When do you start to lose the extra water if you restrict your sodium a lot for the next day or two? Also, if there are others out there with very sodium-sensitive hypertension, when does your blood pressure start to rise after eating something that's high salt and how long does that last?

Jack D's November 7 reply to Vee's November 7, 2001 - Hi Vee, There's no reason to eat a high sodium meal. This is your life, not a game. You should let people know that you are sodium restricted if they are preparing the food and not prepare sodium-laden food if you are making the meal. I have never sat down to a table that didn't have a salt shaker. Salt can always be added at the table but it cannot be removed. It is not a transgression. You're not being "naughty." You need to realize that you are messing with your life. It's not like, "Oops, I ate a candy bar I might not lose a pound" - It's "This could possibly kill me." So it's best to just forget about, "How far can I go and not get caught" and face the fact that you're not going to die if you can't eat salt, but you will if you do.

Gary, November 8, 2001 - Hi, I am new at this. I just turned 41. I was told I have CHF in February of this year. My heart function was at 29% at that time. They got 40 lbs of fluid off me in a week and I have been fighting my weight ever since then. The meds seem to be working and my heart function is back up to 63%. Still, it is very hard to get any kind of prognosis from anyone. Can someone give me some answers or a basic idea what to expect? The word transplant has not been mentioned in a long time well since my improvement. It would help to know what is going on. Thanks.

Jon, November 10, 2001 - Hi everyone, Well, my patio roof is done but I still have some rock and dirt to move, some forms to break up, and some trash to rebag. However, by Monday maybe I'll be back on a regular posting schedule. Ohhh, but my hands hurt! <g> Jon.

Vee's November 10 reply to Jack's November 7, 2001 - Oh come on, Jack. You've never eaten a slice of pizza or a sandwich made with bread you didn't bake yourself? I've done very well for a couple of years now with a low sodium diet, but it's impossible sometimes not to eat other people's food or have a meal that's higher than usual in sodium content, even if my total daily intake is still on target. I'd just like to be able to plan better to accommodate those times. My concerns are as much with keeping my blood pressure down as retaining fluids since I've had no major problems with that.

Ron, November 10, 2001 - Hi, I was advised by Jon to use this web page to ask Jack if he has any recipes for low-sodium pickled hot pepper rings. I think it might be similar to the New York Pickles. Thank you very much in advance, Ron.

Frank Smith, November 10, 2001 - Hello to everyone, I was given prudent advice by members of Jon's forum concerning my carotid endarectomy, which was done on Tuesday, November 6 at 11:30 AM. At 1:30 I was in recovery, and at 3:00 I went to ICU. They kept me in ICU (only because they had plenty of beds) until Wednesday and at 10:00 AM they told me to go home and suffer my discomfort (sore neck muscles, numb jaw from nerve damage) there. I guess my message is that elective surgery for people with CM/CHF can be appropriate and usually with a positive/predictable outcome. Later, Frank.

Jason, November 10, 2001 - Hi, I'm 21 years old and have just been diagnosed with dilated cardiomyopathy about a month ago. It's really hard getting used to all this since I've been perfectly healthy my whole life, without even a cavity! I have no family history of any medical problems. My ejection fraction was 8% when they finally got me in to see a cardiologist because they kept saying my heart was just fine and it was "just pneumonia." I had to spend 1 1/2 weeks at a hospital until they transfered me to the university of Michigan for prep for a heart transplant. As of now, they're saying they're keeping me on all these pills for 6 to 12 months to see if it gets better and they might give me a transplant only if it gets worse.
     It keeps getting harder every day though, when I think of new stuff I wont ever be able to do, like play football with my kids when I have some someday and can't go on roller coasters anymore or skydive or get tattoos anymore. I've lived my whole life doing whatever I wanted and making my own choices but now it's been taken away from me. I was very social and have tons of friends but now it's hard to sit and watch them eat McDonald's food in front of me and do all the things I used to be able to do.
     I don't know where I'm going with all of this but I can't talk to anyone about this stuff because I feel like I'm just griping and annoying all my friends and family. I just had to get it out. Thanks for reading it.

Bob F, November 10, 2001 - Hi Jon, I read often having advanced COPD and CHF. Your web site has been a great help to the quality of my life. I think some Bibles have a clearer translation than others. My Bible's Matthew Chapter 6:34 reads, "Be not anxious about tommorrow for tommorrow shall have anxieties of its own - sufficient unto today is its own trouble." For those of us with a few ills, I can only add amen! Keep up your good work.

Larry's November 10 reply to Gary's November 8, 2001 - Hi Gary, The only prognosis you need is from your doctor. If he or she won't answer your questions find another doctor. I just got rid of one doctor for that reason. For instance, I asked what the results of a recent echo were, and his answer was,"Not good." Well, that isn't much of an answer. This is your body and your life you are dealing with. You need to learn all you can about your condition and your meds. I was diagnosed with CHF one year ago and told my life expectancy was one year. I just saw my doctor 2 days ago and he told me my life expectancy was one year. I'm looking forward to him telling me that for several more years. <g> With the proper life style, meds, and the grace of God we all have a chance. Good luck, Larry.

Steve Holland's November 10 reply to Vee's November 7, 2001 - Hi, I just thought I would give my experiences. I don't get high blood pressure from salt but it causes me to have difficulty breathing. If you ever wake up gasping for breath, you will have no problem avoiding salt. I have cut out almost all salt from my diet by not eating processed foods. My wife and I do all of our cooking now and we are very careful to watch what we buy. I also don't eat out because of all the salt added. Some meats have salt added in a broth. Some chicken and most turkeys have this added to make it self-basting. I recommend fresh chicken or meat that shows no salt added. I limit my intake to less than 2 grams a day. I am also taking Lasix and that helps push any salt out but this only works up to a point. I agree with Jack D: This is no game, cheating only hurts you and it isn't worth dying over. I substitute Mrs. Dash seasoning mix for flavoring and it really helps a lot. The best side effect is my wife lost 10 pounds since we started restricting my salt.

Steve Holland's November 10 reply to Gary's November 8, 2001 - Hi Gary, I am in almost the same boat. I am age 46 and was diagnosed with CHF in March of this year. I lost 40 lbs of fluid in a week also. Since then I have watched my diet and what I have found helps the most is restricted salt intake. Anything "store-bought" usually has way too much salt. My wife and I now cook all our meals from scratch and watch salt in our food purchases.
     My doctor has eased me into what I am looking at for a diagnosis during the first 6 months. I think some doctors are reluctant to tell all at once because they have some patients that can't handle the news. My doctor has me on 6 medications and I have no problem with that. One of his other patients whines about the pills and can't understand why he has to take so many. Duh! I take each day as it comes. A transplant is my only option if the pills quit working, but I think if I take care of myself that will be years down the road. Good luck, and let us know how you do.

Jon's November 10 reply to Gary's November 8, 2001 - Hi Gary and everyone, Please remember that a prognosis for a person with heart failure is almost impossible to give accurately. There is simply no way to know, whether you're a doctor or not. CHF is a mix of so many changes in so many body-wide systems that doctors just can't know. I have been a walking, talking corpse for 2 years now according to my ex-doctor's prognosis given right after I was diagnosed with CHF and an EF of 13%. <g> Jon.

Loretta D's November 10 reply to Jon's November 10, 2001 - Hi, When I was first diagnosed with CHF, cardiomyopathy, and sleep apnea, my main concern was how short a time I had to live. Recently, I was approved for Disability and I will continue to be the major source of income for my husband and myself. Can you or anyone tell me what the longest time is that someone could live with CHF? How long has everyone been diagnosed with it? This is not a question just for me but for everyone. Thanks.

Jon's November 10 reply to Loretta D's November 10, 2001 - Hi, To your question about how long a person can live with CHF, I can only quote my last post: "a prognosis for a person with heart failure is almost impossible to give accurately. There is simply no way to know, whether you're a doctor or not."
     To your question about people's personal experience with CHF, I am almost exactly 7 years post-diagnosis. :-) Jon.

Ben B's November 10 reply to Jon's November 10, 2001 - Hi Jon, I agree with you 100% for once! <lol> I suspect that if my EF had gone from 29% to 63% in such a short time the prognosis I would be trying to get the doctor to give is that I was cured rather than how long I was going to live. However, a doctor would be irresponsible to pronounce that. By the same token, I do not believe any doctor can give us the quantitative "number of years" prognosis many people want with this illness. It is just plain impossible. I have never seen a doctor so completely wrong about anything in my life. Five years ago my doctor told me he didn't know for sure and that is the only true answer there is. If he tells you a precise answer like "5 years" he must be carrying a crystal ball in that medical bag.

Walter K, November 12, 2001 - Hi, Prognosis and doctors' input seem to be current and frequently recurring topics. Reprising my experiences of 2 years ago when I was diagnosed with CHF, may be helpful. It certainly supports Jon's view that one must (must - must!) get the right doctor.
     Anyway, when I first had problems I switched from one cardiologist to another partly because the new one was highly recommended by friends and was at least acceptable to my internist, but mainly because he was listed in a local article as being one of, if not the, leading cardiologists in the area. He confirmed the diagnosis, put me on Norvasc (which I soon found out was not recommended for CHF) as the only med and said nothing about salt or fluid restriction. When pressed, he gave me a 50% chance of living one year and said there was no better treatment available but that if I was no better in 6 months I might consider trying to get into clinical trials at the University of Pennsylvania.
     My wife and I saw no point in waiting 6 months when given only a 50% chance to live 12 months. Somehow I found this site, posted my situation and was assured by all that this guy did not know much about CHF. I soon got to the CHF clinic at the University of Pennsylvania, where I was promptly taken off Norvasc and found out there were many standard meds for CHF without having to go into clinical trials. Also, through this forum I learned of a good cardiologist in my local area who does know a lot about CHF, having studied under a CHF specialist. I promptly switched to him; now I go to him and to the Univesity of Pennsylvania and think I am getting the best possible treatment. It's 2 years now and I feel better and no one is talking about 50% chances.
     This has been longwinded but, when I was new to CHF, hearing stuff like this was a big help and I feel I should reciprocate. As Jon and others often say, you gotta get the right doc!

Karen K's November 12 reply to Loretta D's November 10, 2001 - Hello Loretta, Your question gets asked frequently here at Jon's Place. I am one of the "oldies but goodies" on this board. It has provided me with a wealth of information and insight over the past years. I was diagnosed with CHF/cardiomyopathy in January of 1991. At the time of diagnosis my EF was 19%. After my initial hospital stay and testing, I was referred to a cardiologist for a cardiac cath and heart biopsy. The cardiologist gave me a "gloom and doom" prognosis: I was to start going downhill within one year and within 5 years require a heart transplant. That shows how much he didn't know. My EF improved to 42%. Biopsy showed nothing (as in, it didn't detect a virus as the cause).
     Now it is November of 2001. I will soon celebrate my 11th year after diagnosis. My EF has stabilized in the area of 32%. I take all of the usual meds and watch my salt intake. I also make a point of weighing myself at night and each morning. I seem to be doing well. In the nearly 11 years, I've only been hospitalized once and that was due to fluid in my lungs which seemingly happened in a matter of hours.
     I would say my doctor's prognosis was certainly uncalled for. It would have been much more appropriate for him to tell me he didn't know what the future held. I was petrified with his prognosis and literally obsessed over every bodily function. I even sat and watched a pulse in the palm of my hand that I was certain was a new symptom. To be blunt, I was an emotional mess. Once I came to the realization I couldn't live my life obsessing over every small thing and started living as full a life as possible (and sometimes more full than it probably should have been), I found that I was able to carry on in a much more normal manner.
     We have just moved into a single-story home but this is a result of my husband having been diagnosed with MS, not due to my cardiomyopathy. I have osteoarthritis and osteoporosis throughout my back. I sometimes think these conditions are more limiting than my cardiomyopathy. I realize everyone is different and some of us are able to do more than others. I guess what I'm trying to say is, just get on with your life. You certainly will be making modifications but life is possible after your diagnosis. Best of luck, Karen.

Donna's November 12 reply to Loretta D's November 10, 2001 - Hi Loretta, Like Jon and others have said, it is impossible for anyone - even doctors - to tell how long someone will live. My husband was diagnosed with CHF over 40 years ago! At that time his doctor was also a good friend and leveled with him that he had to first get over the first year, then get to 3 years, then 5 years. If he made it that far he would be considered better off than his peers. Well, after over 40 years he had another heart attack that left him with only half his heart. The right side doesn't work hardly at all. His EF was only 25%. He underwent 4-way bypass in July and last week his EF had gone up to 30 to 40% (with only half a heart) so now you can say someone has lived over 40 years with severe CHF. I love what Jon says, don't worry about dying, just be concerned with living the best you can. Make life changes and love and live.

Pat M, November 12, 2001 - Hi all, For the past couple of days I had been feeling so much better that I invited my daughter, her 5 kids and her husband to dinner with me and my husband. I took my time to cook and prepare early in the day and we had a nice dinner. Today, I feel like I have run a marathon. My ears are ringing and my body is soooo achy. Has anyone else ever experienced this after having a few "great days?" When I am this tired my lower back is so sore, just walking around. Jon how on earth did you do your patio roof, digging and toting by yourself? Good for you! The forum is great, thanks to you all. Pat M.

Jon's November 12 reply to Pat M's November 12, 2001 - Hi Pat, I have stronger heart function now than many people here. Also, I dropped my slow but steady exercise program 12 weeks ago Wednesday and started a new 6 month program that is more intense than anything I would advise most CHFers to try. However, I am taking total rest day number 2 in a row today after the patio roof repair. I did fine until we did the concrete work and clean up. The president of my Local Union did most of the work and it was his skills that made it come out so well.
     I think it is safe to say that we have all experienced what you describe at one time or another. <g> My CHF doc calls it a the "day three fatigue hangover" because it usually hardest hits on the third day (2 days after over-exertion). Jon.

Tracey C, November 12, 2001 - Hi everyone, I just have a quick question. Jason mentioned that we can't get tattoos. Why is that? Is it only if you're on Coumadin? Not that I have any, it was just an interesting point. Regarding the topic of not watching your salt 100%, my mom who has DCM also, drives me nuts because she'll eat out at least twice a week whether it be at an Italian restaurant or In-'n-Out. I lecture her and she says she always "orders carefully." So I ask her what she had and it's always loaded. At least I finally got her to order the "Protein Style" with no salt at In-n-Out.
     I'm totally opposite and won't budge no matter how many time she tells me I'm over the top with monitoring my sodium. I went out last night for the first time in months for a party. The host had 4 prepaid items everyone could select from. I couldn't eat any of them, so I ordered off the planned menu and paid for my own dish. I then explained to her my restrictions so she wouldn't think I was just a snob and everyone was fine with it. After sending my fish back 3 times until it was totally plain, it worked out. I guess there's always a way, it's just inconvenient sometimes.

Jack D's November 12 reply to Ron's November 10, 2001 - Hi Ron, Sorry, but I don't even know what hot pepper rings are. However, I pickle lots of things. You can use any recipe for pickling, just leave out the salt and substitute vinegar for whatever water is suggested by the recipe. The resulting pickled goodies will really make you pucker but they are good.

Diane P, November 12, 2001 - Hi, I am reporting in after a 5 day emergency stay at Club Med. I had posted about my unsatisfactory trip to the ER. I saw the local cardiologist, who said everything was okay. One week later I was at the heart failure clinic at the University of Florida for a scheduled appointment and when the nurse saw me, I was given oxygen, then my vital signs were read and my meds were gone over. The doctor walked into the room and saw that I was on "overload" by just looking at my carotid artery. I was admitted and put on the newly approved drug Natrecor for a few days and got "dried out" and my wedge pressure went down to be normal. I also got a right heart cath also.
     The good news is that my heart stayed the same size and my EF is 35%. I talked to the patients waiting for a heart and I am glad I could be sent home. The message - See a heart failure specialist and if you don't feel good, find out why! There is no point in suffering silently!

Jeanette W's November 12 reply to Jason's November 10, 2001 - My dear Jason, It is going to be okay. For over 3 years I have had DCM. I understand completely where you are coming from because I've been there! It is completely terrifying and aggravating at the same time. Your emotions are making your head spin and you don't know what direction to go. I felt just like you do. You are not alone, believe me. You are going to be okay, though. I was misdiagnosed too and would probably have died if I hadn't gone to the ER. I had an EF of 15% but after 3 years on meds I can say with a big smile that my EF is now 35%! For me that is a big deal. They were talking transplant to me too. If you ever want to talk about it or just want someone to vent to, I am here. By the way, I was 31 when diagnosed. I check my e-mail every day and would love to help you any way I can even if it is just by listening. Take care and good luck, Jeanette.

Jack D's November 12 reply to Vee's November 10, 2001 - Hi Vee, When I was sodium restricted, instead of eating the sodium laden things I liked, I learned how to make those things without sodium. I never had to bake bread because there is bread available here in the grocery store that has than 2000mg in a one pound loaf. I never had to eat other people's food and even in a restaurant I was educated enough to get very low sodium food. The first year was really hard, not the avoiding sodium part, because I couldn't stand for more than a couple of minutes so all the food preparing goodies were brought into the living room so I could prepare meals there. It was easy to virtually eliminate sodium by buying fresh, unprocessed foods. We ate lots of fresh salsa in those days and the salsa became a base for spaghetti sauces and, with the addition of shredded cabbage, a nice hefty salad. I missed pickles and sauerkraut so I learned how to make them without salt by experimentation.
     The second year was a little easier because I could walk to the corner fruit stand and buy goodies every day. This also provided me with much needed excercise for my heart. Nobody in the house objected to my "virtually no sodium" concoctions because they were really good even if they sometimes took hours of preparation. They didn't have or need salt. When I was diagnosed, my EF was 15%. My heart was significantly enlarged. I weighed 330 pounds and I smoked 3 packs a day. I had no control over what my body was doing but I had absolute control over what I did to my body.
     They said I had a 50% chance of surviving for 2 years. I immediately quit smoking, quit eating anything with more than a trace amount of sodium, limited my fluid intake to 2 liters daily, was led blindly to my excercise class twice a week and collapsed blindly afterward for several hours. During that first year I was little more than an automaton. I have few memories of that year but I gradually got better and then discovered I had Hepatitis-C. Well, I kept up my diet/excercise program and added injections 3 times a week for well over a year.
     All the hard work paid off. My heart shrunk and my body shrunk. My ejection fraction went to over 70%. I have had no trace of Hep-C for over a year. I can eat salt now but it is more fun to make stuff without it. Purchase some citric acid crystals from a health food store and use it like salt. It's great!

Donna ?, November 12, 2001 - Hi all, I thought there would be more messages here. Victory messages would be good. I've read that diastolic dysfunction is not a disease. So we don't checkmark the box next to heart disease when in the hospital having other procedures, such as a colonoscopy, right? Since the flu shot goes first to the elderly, children, and people with diseases such as heart disease, we wait for our flu shots along with the general population, right? Does a simple cold/sore throat kick someone with CHF more so than an otherwise healthy person? I'm just getting over a cold that's had me down for about 4 days. Do a lot of you guys work full-time jobs, then come home and take care of things at home? Thanks, Donna.

Jon's 11-12 reply to Donna ?'s November 12, 2001 - Hi Donna, Heart dysfunction - whether systolic or diastolic - is usually a result of heart disease or heart trauma. Both need to be taken into account when considering any other medical procedure, so check that box. Flu and colds hammer CHFers far more than healthy people. Get your flu shot at the head of the line. Also get regular pneumonia shots. Jon.

Brenda's November 12 reply to Loretta D's November 10, 2001 - Hello everyone, How long can you live after being diagnosed with CHF? My mom has been living with CHF for 14 years come January. Although I am not the sick one, I am glad I am able to read and post with y'all. I last posted on November 2. We are still working on mom's anemia problem, treating it with procrit shots and IV iron. Her hbg count was 11.4 and after one treatment 11.7. This seems like a slow process. Her kidneys are doing fine.
     We sought out a CHF specialist listed on Jon's site because even being with the same cardio doc for 14 years, she needed a change and he was at a stumbling block on how to treat her and make her comfortable while she lives with her CHF. Mom is a class 3 to 4 and does not choose (and we don't know if she needs) an ICD, pacemaker, or heart transplant. She just wants to be comfortable and be able to have a productive life opposed to being sick from the meds and not being able to do anything because of them. This doc wants to do some tests not done before and mentioned new treatment.

Sid K, November 12, 2001 - Dear Jon and fellow CHFers, I received a mailing about a product called AtheChel Plus over the weekend. You can visit their website at It sounds like something I could use. I am really getting tired of all the side effects of digoxin (Lanoxin), Coreg, Fosinopril and Norvasc. Has anyone out there had any experience with AtheChel Plus? If so, I would appreciate knowing if any benefits resulted or is it just another inconsequential herbal mixture? Thanks in advance for your input.

Mike W's November 12 reply to Sid K's November 12, 2001 - Hi Sid, I post here the disclaimer from the bottom of the product's description page: "Unlike prescription drug products, the results achieved from natural supplements may take up to 90 days before you begin to reach your long-term goals. Our products are not drugs. Under existing FDA regulations, we can make no health claims whatsoever as to their effectiveness. These products are not offered as a substitute for a physician's care nor as an option to prescribed medications or their side effects." Not exactly a guarantee of any benefits, is it?!
     For any medical "technology" "discovered in 1893" you'd think it would be in wide use now, dontcha think? There's money to be made from effective treatments. The drug companies have one of highest profit margins of any major industry. You don't think they'd miss out on such a "miracle bonanza" as simple chemicals that could affect great results. Just something to chew on, Mike Wafkowski, skeptic from New Jersey.

Sid K, November 12, 2001 - Dear Jon and Everybody, I had a blood test last Thursday and Cleveland Clinic's lab determined that my triglycerides were at a dangerous 900+ level. Dr. Isserman immediately ordereded that I be placed on 160mg of TriCor fenofibrate daily to get my triglycerides down to a more safe and manageable level. I had never heard of this drug before. Is anyone out there taking it with any degree of measurable success? I was on a niacin prescription (1000mg daily) for weeks and my triglycerides went up, not down. Before that I was on Gemfibrozil, which decreased my triglycerides to about 300, but the side effects were overwhelming and I had to stop taking that drug. I would appreciate hearing from anyone who can tell me about his experiences with TriCor. Many thanks and be well.

Jack D's November 12 reply to Sid K's November 12, 2001 - Hello Sid, There is a reason that herbal wonders aren't prescribed by real doctors. They either do nothing or they will make you die faster than you already are. Herbal mixtures are not always inconsequential. Herbs are natural sources of many powerful drugs, only there is no standardization of potency. One bottle from the same company may be twice as potent as a different bottle from the same company. They also have lots of other ingredients that may enhance drug potency and also may cause extra side effects. They interact with the prescription drugs you are already taking.
     The product you mention isn't herbal. It's just megavitamins and a fictitous process called "oral chelation." IV chelation works to remove heavy metals but it doesn't do anything else. Unfortunately these companies can lie through their teeth and there are many people who buy into it.

Ben B, November 12, 2001 - Hi Jon, What happened to Dr. Silver's section? I didn't see it in the index, or am I nuts? Everybody else, how about some new bios? Also, what has happened to some of these people. Are you still out there? Joy R, Lee Ann D, Leland Yee, Gus, Robin Lynn, John or Dina Rice, Hope M, Thelma Cull, I can think of many more. Why not post once in a while? I hope nothing has happened to anyone.

Jon's November 12 reply to Ben B's November 12, 2001 - Hi Ben, You can read about the Doctor's Page at Dr. Silver has not been able to regularly make it to the questions and without some degree of regularity, it's just not a working page in my view. He is far more than busy and I don't fault him at all. I thought about asking my CHF doc to answer questions since he did so marvelously before (years ago) but I felt moved not to ask when the time came, so I didn't.
     I have been removing forms as well, from the MedSpeak page, Jokes page, Recipes page and FAQ page. I just cannot keep up so there is no reason to invite more for me to do. ;-) Reading about the same old questions with the same old answers doesn't appeal to everyone, so many people move on once their questions are pretty well covered, and who can blame them? Jon.

Eris, November 12, 2001 - Hi, This year all my doctors, including my cardiologist, my pulmonary specialist, and even my eye doctor, have told me they don't want to see me for another year. Even my primary doctor sees me only every 4 to 6 months. I feel kind of abandoned. I can't tell if they have given up on me or if they think I am doing so well that I don't need regular visits. It is possible that they have too many patients and this is part of a general cutback. I still have serious CHF and COPD. I take all the usual: beta-blockers, Losartan, digoxin, Coumadin, etc. I tire very easily but haven't had any major problems since a bout with anemia and pneumonia in June. Does it seem unusual for these doctors to only want to see me once a year?
Jon's note: Is your health stable?

Tony T's November 13 reply to Sid K's November 12, 2001 - Hi, You said that you have side effects with Lanoxin, Coreg, Fosinopril and Norvasc. I am curious about the side effects you experience. It's taken me 3 years to find out the correct levels and combinations of meds to have the best impact on my CHF and heart beat irregularities. Lanoxin makes me tired and unenergetic. Also, if I take a calcium product too close to my Lanoxin dose (or my Verapamil), I get increased heart irregularities. I also take Verapamil, a CCB. It has had the most positive effect on my CHF. It definitely increases my energy level but it has a lot of interactions with my allergies and certain foods and my other meds. I take my Verapamil at least 2 hours away from my other meds, or I experience increased heart irregularities. I have also found out that certain clothing and bedding dyes, and other household chemicals interact with my meds and result in more heart beat irregularities including increased blood pressure. It is really complex, isolating almost every interaction, but the benefits are well worth it. I also separate my Coumadin from my other meds or I get painful cramps and constipation. I thinkl I have learned a little about why some have to have devices implanted to help their hearts have a regular beat. The cause of heart irregularities is very complex. I just figured I'd share some of my experiences and am curious about yours. Regards, and better health, Tony.

Davida S' November 13 reply to Vee's November 7, 2001 - Hi Vee, My husband was diagnosed with CHF. At its worst, we saw fluid retention within hours of a salty meal. This was when his EF was under 30%. A night at Red Lobster was hideous. We would see a 2 lb or more weight gain the next day. It would take 24 to 48 hours to get it back down. That meant low salt to no salt, and sometimes an extra Lasix. That's not an issue with him since his EF has come up tremendously and we see no weight gain with meals like Red Lobster but we are no fools - meals like that don't come 2 days in a row. If we are going on vacation or staying with family, he paces his salt intake. He will have fruit or oatmeal and very low salt snacks for lunch, which prevents the sodium in dinners from having too much impact.
     It really boils down to daily salt intake. I am the salt sensitive one with hypertension. I participated in a study that helped me reach this conclusion. I am so salt sensitive that high amounts of salt in a meal cause an immediate effect, within hours. My theory is that if I can taste the salt, it has too much for me. My husband on low salt intake has helped me, but I pace my daily salt intake. If I stay within limits, it's not that bad.
     In the study in which I participated, they gave me a 2 liter salt solution by IV and they took my blood pressure readings every 15 minutes. It continued to rise. I stayed for 4 nights in the study and they controlled all meals and bedtimes. No drugs were involved, just salt. One day I had normal salt, one day I had no salt, one day I had high salt (IV day). One day I had low salt. My no salt day was the lowest I ever saw my BP without medication, at 115/71. The IV day was the highest. So if you are salt sensitive like myself, you can control your BP with your diet. Let's just say I love to eat good food but hidden salt is my enemy.

Vee's November 13 reply to Jack's November 12, 2001 - Hi Jack, I guess I sounded too flippant in my earlier comments. I do take the sodium restrictions seriously. Except for bread products, I generally do fine with my diet provided I'm the one preparing the food. I only take 20 to 30mg Lasix a day, though I'm permitted up to 80mg. That's gotten a bit harder since I started some new blood pressure meds. I can't eat tomatoes and related foods in that whole plant family or I get rheumatoid-like symptoms. Whew, finding that out was almost a bigger blow than the salt restriction!
     I'd still very much like to know how others with CHF handle other people's food. When it's family or close friends, you can plan for your needs in the menu. If you're eating out, you can be somewhat selective but I'm going to a wedding and will be away from home for several days, plus there are all the holiday gatherings, meetings and lunches at work, etc. I don't like to make a big deal out my diet and my medical status isn't everyone's business. If it does come up, I just say I'm on a restricted diet for health reasons. Often I'd rather not go than rain on other people's parade, since food is such a key element in many social events. Sigh.

Jon's November 13 reply to Vee's November 13, 2001 - Hi Vee, Some tips include stopping at a grocery store when out of town and picking up fresh fruits and veggies, washing them in your hotel sink, and keeping them ziplocked in the car for snacking just before and after a social event to control hunger. Then you can honestly say at some events that you really aren't hungry just yet. At my sister's wedding, I skipped the food entirely and mingled extensively. It kept me in the social plane and no one even noticed, since I moved around a lot. Women have a built-in advantage at events which center around food - you have a purse. <g> Pick at the offered food and bring some along with you which won't be too obvious. Be sly and you'll find all kinds of ways to beat the system on dietary sodium restriction. ;-) If you think it is just impossible at any one event, count on that 80mg Lasix - taken just before eating - and severe sodium restriction for 36 hours before and 48 hours after a sodium-laden meal. I don't recommend it (I just turn down the food but at certain business functions, that's hard to manage) but it can be done. Just don't make a habit of it, which it sounds like you won't. Jon.

Anthony P, November 13, 2001 - Hi everyone, This is my first post in over a year. Jon, I've got to thank you for this site. I read it every day and it helps me a great deal. I wanted to ask you or anyone that can help about leg pain. Sometimes it becomes unbearable. I have mentioned it to my doctor but he says there's nothing he can do for it. I stand all day at my job as a chef but it's getting harder to do. Any help would be appreciated.

Jon's November 13 reply to Anthony P's November 13, 2001 - Hi Anthony, Thanks for the kind words, I'm glad the old web site helps. Leg pain is one of those things that it really helps to find the cause for it, so the treatment helps the cause as well as reducing the symptom - pain. If your doctor is not willing to do the detective work necessary to isolate the cause, I strongly urge you to find a doctor who will - that's his job!
     First, if you take a cholesterol-lowering drug, I suggest that you get a second opinion immediately, since this can be a sign of a very dangerous side effect of such drugs.
     If you have serious blood sugar problems there may be help for your leg pain; if you have blocked arteries in your legs there may be help for your leg pain; if you have certain kinds of nerve problems there may be help, and so on. If at the end of the day no cause can be isolated, you may wind up like me on daily painkillers. Believe me, it's not an ideal solution but it's soooo much better than constant pain that it is well worth the expense. I take tramadol (Ultram) which is non-narcotic so drug testing is not a problem. It doesn't completely eliminate my lower leg and foot pain but it drastically reduces it. Jon.

Davida S' November 13 reply to Debbie D's November 7, 2001 - Hi Debbie and Autumn, To thine self be true. It is not selfish. You can't love or help anyone if you don't love and help yourself. To allow yourself with CHF to be miserable and stressed out is awful. CHF strives in stress and so does cancer. You can't blame your husbands or doctors for the progression of your disease if you have not done the very best you could for yourself. You have to know when to hold them, when to fold them and walk away. Reading the dialogue between you both and Jon told me 2 things. Jon believes it is black and white, but we believe compromise on either's part allows gray. There is one difference between your views and Jon's, one is a males view and the other a female's view. Neither view is right or wrong, it's what works for you. How can you help someone else and you can't help your self? Learn the lesson the airlines have taught, put your mask on first. Jon is blessed with a wonderful wife but his true blessing was when he opened his eyes to recognize his blessings. Luckly he opened his eyes in enough time to save his wife and marriage because his wife I am sure was holding on as tight as possible to keep that marriage afloat. If Jon had not opened his eyes and jumped in to help, all could have been lost. There is just so long one person can hold the weight of another person before being weakened from sheer exhaustion, spiritual and mental breakdown. Let's just hope your husbands realize as Jon did what blessings they have in you. If they don't, maybe you will realize that God wants more for you than for you to be beaten down spiritually and mentally by husbands that think more of games and the fellas. This is a CHF forum and thank God you can turn here and meet friends that understand the mental and physical as well as spiritual challenges that lie within.

Jon's November 13 reply to Davida S' November 13, 2001 - Howdy-doo Davida, A couple of points: First, my wife holds the same views I do and so do all but one of the women readers who e-mailed me to say so, so it's not just a man's view. ;-)
     Second, sometimes a wife is not being a blessing to her husband and still wonders why he doesn't see things her way. Be sure (regardless of as husband to wife or as wife to husband) that you really are being a blessing to your spouse before assuming they should think that you are. This means putting them before you - humility. That's a hard truth but a truth nonetheless. I seemed incapable of it before being saved by Jesus Christ, at which time my marriage blossomed. Humility is hard to find but it is the key -always putting the other first brings unexpected benefits to the one being humble.
     Finally, and here is what ticks off so many people (liberals), I believe that there is always a right and wrong; Life is not just a series of relative options and alternatives (all perfectly okay) but rather a series of choices to choose what is right or to choose what is wrong. What you choose is who you serve. Relativity is a cop-out. That's my view and it really steams liberals. <g> Jon.

Cathleen, November 13, 2001 - Hi, I am relatively new to this site and would appreciate some input. After years of uncontrolled hypertension, a possible TIA and several bouts of CHF, I finally went to a cardiac specialist. He was appalled that my doctors didn't do enough for me and immediately increased my Lasix and Monopril. The numerous tests indicated that I have moderate mitral regurgitation with significant thickening of the valve leaflets. In addition, I also have left-sided heart enlargement and the MRI/MRA and carotid sonogram showed "two lesions that need further investigation" and plaque in the carotid arteries. When I spoke with my (now) former PCP about the aforementioned, he said the test results showed nothing and were insignificant. Why would a once-trusted professional do that? Your input would be greatly appreciated. Thanks, Cat.

Davida S's November 13 reply to Jason's November 10, 2001 - Hi, My dear Jason, there is hope, much hope. My husband was 35 years old (now age 37) and it happened to him just like it happened to you. For a whole month his common cold progressed and got worse. They suspected pnemonia, gave him antibiotics and finally a race to the doctor's office gave us the bad news: An EF under 10% (like yours), and a stay in the hospital for 2 1/2 weeks with pnemonia in both lungs. He could not cough without coughing up bright red blood.
     A virus attacked his heart, I guess the same one that progressed his cold symptoms to pnuemonia. Dan now has an EF in the mid 50s. It took 16 months before his EF came back but each doctor's visit saw improvement. Each echo saw his EF rise. My advice for you, young man, is pick that chin up and work on improving your heart function. Strengthen that heart muscle with walking every day. Walk 10 minutes until you can build up to 30 every day. Every week walk a little further than the last week but do not sit on your duff. Get up and get moving. Use light hand weights to do arm curls but ask your doctor to confirm that this is okay first. Just call the office and leave the message with the nurse.
     Watch that salt intake. Forget McDonald's for now - it is only temporary, I feel. Have faith and pray for guidance. With an EF so low salt has to be eliminated. My husband would go to McDonald's and have a grilled chicken sandwich and no fries. Ask for fries without salt. You have to wait for a new batch but order a small because the fries have some salt in them from processing. It is possible.
     I hear and feel your pain, I went through this with my husband. I saw him cry one day when he could not help me bring a huge box up the stairs of our apartment. I went to him and cried with him and told him it's not forever, it will get better. I am sure he cried many days by himself. He even got depressed and the doctor prescibed antidepressants but he refused to take them and built his mental strength up with his faith that no matter what, he will make it.
     Now the doctor says ride that roller coaster, do whatever you want. This is possible for you also. If you think 21 is young and bad, 35 is worse. He was at the height of his career and we were married only 3 months. You have lots of years ahead of you. This is what is front of you today, so deal with it. You can do this. You can make it over this mountain. You will see the improvement but follow the doctors' orders to the letter, with no deviation. Walk, eat well - plenty of fruits and juices which will fill you up with no salt, and pray for guidance. Please feel free to e-mail me, I can inspire you to push ahead. I don't know what the future holds for you but it is what you make of it. The glass is half full, not half empty.

Jeanette W, November 13, 2001 - Hi all, I have a question that has bugging me since I saw Tracey C's post about tattoos. I have DCM and am wondering why people like us can't get a tatoo or go on rollercoasters? I am a rollercoaster fanatic, I can't get enough of them but since diagnosed with DCM 3 years ago haven't touched one. My old cardiologist just gave me a look when I asked him if I could ride, not even an answer, just this look!
     Also, I just had a birthday and wanted a small tatoo but thought I would ask first. If anyone has an answer it would most appreciative! I don't see my cardiologist until December and it is too long to wait for an answer. I have been well, stable and doing great. I hope all of you are too, and have a great Thanksgiving. I know I will be eating too much! <g> Thanks to you Jon, you are the best! Congratulations on your new patio - enjoy! God bless all, Jeanette W.
Jon's note: still recovering

Judith L Cox, November 13, 2001 - Hi everyone, I am so glad to see this site! I am a 52 year old female who went into CHF after getting atrial fibrillation, which I still have. I have high blood pressure but it is now under control. I have undergone cardioversion trying to get my heart to start beating normally again to no avail. A new cardiologist couldn't understand why the old one never gave me a heart-building drug and I am now on digoxin for that reason, along with 8 other meds a day, and I am surviving.
     I do have a couple of questions though. I thought perhaps someone out there could help me. With the CHF, I found my water pill wasn't working correctly or enough. I am on 5mg Amiloride a day. Is this a low dosage? The other night I awoke in the middle of the night short of breath and spitting up clear stuff. Afterwards I felt better. The nurse said these are all signs of CHF. I haven't spoken to my doctor yet, although I will on my next visit. Also, my legs and ankles have started to swell and I thought a better diuretic would help. If anyone has had these problems, could you let me know? Thank you!

Sid K's November 13 reply to Tony T's November 13, 2001 - Hi Tony and hi fellow forum participants, I am on Coreg, digoxin, Fosinopril, TriCor, and Norvasc for my heart and circulation problems. My major side effect seems to be a rather heavy state of fatigue that sets in just about every mid-afternoon. Some of my evenings are a total loss as all I do is yawn and mope around, trying to keep my eyes open until bedtime.
     I also get weird, traveling pains around my mid-section, swollen ankles from the Norvasc, and dangerously high triglycerides (900+) from a couple of these CHF medications. There is some forgetfulness from the Coreg too. There's depression (frustration) which could also be linked to some of these drugs. Before I started taking these medications I was free of these symptoms. No doubt about it, a failing heart can cause fatigue too so we're never sure who or what the culprit(s) might be. You might say that I am in search of a better way of controlling an enlarged, failing heart. My EF soared up to 55% on my last echo but there wasn't much difference in how I felt as compared to when I had a 15% EF.
     Any suggestions, anyone? Thanks for your concern. I wish all of you the great gift of perfect health.

Sid K's November 13 reply to Mike W's November 12, 2001 - Dear Mike, You write in logical, sensible, no-frills phrases. If it's too good to be true, it is probably false, that's the sound advice you seem to be dispensing in my direction. Please do me a great, big favor and visit Please read some of what is reported at that web site and advise if you perceive this fellow to be one big hoax and fraud. I hope others will take the time to read just a few of the thousands of heart-related pages that appear here and let me know if this site is really "Heart Fraud, USA." Thanks lots!

Karen K's November 13 reply to Jeanette W's November 13, 2001 - Hello Jeanette, I'm surprised no one has responded to the questions about a tattoo. My take on this is that with a tattoo comes the possibility of an infection (somewhat the same as when we have our teeth cleaned) and the infection generally goes to the weakest part of the body (in our cases, the heart). I don't know how kosher this is but my brother, who is a physician's assistant, suggested taking a prophylactic dose of the medication you take prior to a dental procedure and then getting a tattoo. I haven't - yet. I love the look of a small tattoo, discretely placed but I'm also 59 years old and am sure I would never here the end of it were I to get a tattoo. I've used temporary tattoos. They actually last for a number of weeks if you don't scrub them. Karen.

Sid K's November 13 reply to Jack D's November 12, 2001 - Hello Friend Jack! Many thanks for the very wise input. I used the word herb because AtheChel Plus does claim to contain garlic, Tumeric Rhizome and ginger root - all classified as herbs. Anyhow, I will ask you to do what I asked Mike and others to do. Please visit that web site in my post to Mike W. If this fellow is a hoax or a fraud, the whole world should be exposing him for what he has done and is doing. I value your impressions and opinions. Is this man and his company another horrible hoax that CHF sufferers should avoid like the plague? Thanks in advance.

Steve Holland's November 13 reply to Jeanette W's November 12, 2001 - Hi, I can only guess the roller coaster ban would have to do with your circulation. The stress of gee-forces would not help your heart if it is pumping as weakly as mine. As for the tattoo, I have personal knowledge of the problem with them. We are susceptible to infection, hence the need to take care of our teeth and general health. No matter how good the tattooist is you can get an infection easily. I have tattoos and have been very lucky with having no infections. I also got them when I was a lot younger and thought I knew everything. I also did not have DCM then. I had friends get a tattoo from the same person as me on the same day and theirs got infected. You have never seen anything as icky as a tattoo infection and the thing looks really bad when it does heal. All tattooists try to be sanitary but even then stuff happens. I hope this helps.

Cheri S, November 13, 2001 - Hello everyone, I'm still here and doing fine. I have a strange problem maybe someone can give me some advice about. I needed my Coreg prescription refilled so I called my heart doc and asked the nurse for a refill. I waited most of the day but the doc did not call in my refill. A little upset, I called back the next day and the nurse told me that she would make sure he saw the note for the refill. I waited again patiently for the doc to call the pharmacy. I even called his office a second time to make sure that he got the note. His nurse told me that she would make sure he got it. When I called the pharmacy that evening they still had no prescription fro the doctor for me! Tomorrow will be the third day without my Coreg. What am I doing wrong? How do I get the doc to refill my prescriptions? Should it be this hard to get a refill? Any suggestions would be appreciated, Cheri S.

Jon's November 13 reply to Cheri S' November 13, 2001 - Hi Cheri, Get a new doctor immediately. It is dangerous to stop taking Coreg cold. Either go to his office and get a written Rx in your hand before you leave or have the pharmacy call the doctor and get the refill order, but as soon as possible get a new doctor. Jon.

Jack D's November 14 reply to Sid K's November 13, 2001 - Hi Sid, Yes, I believe he is a scammer, a snake oil peddler, but a very good one. He knows how to push all the buttons. He raises your hackles. He makes you believe. Lemme hear ya say, "Hallelujah!" Now, if he was presenting hard evidence and scientific studies for the edification of the masses and referencing other studies to back up the research he had done because he was a bonafide altruist, it might lend some credence to his rhetoric. However, what it all boils down to is a very good and detailed pitch to sell his patent medicines to a very gullible and needy group of people.
     I even agree with him that some of the stuff shoved down our throats by the medical community is bunk - but so is the stuff that he is peddling. I am sure that the stuff he is pushing probably doesn't have any side effects worse than a bad case of the trots but then it most likely doesn't do you any good either. Everybody has the right to throw away their money on anything they choose but this is more like religion and everybody gets to choose that too. So as far as these guys go, I must be an agnostic. I know they are there but I don't really care. Jack.

Jon, November 14, 2001 - Hi everyone, If you really want to add to your confusion about the way doctors view CHF, check out the new "stages" the ACC/AHA have made up for us CHFers. These are called "stages" rather than classes and are explained at The Manual now. Jon.

Jeanette W's November 14 reply to Cheri S' November 13, 2001 - Hi Cheri, I agree with Jon - get a new doc! I have no problems with my refills. In fact, the moment I call my cardiologist they call it in. It sounds like he has too many patients for his service and no nurse who can make a simple phone call for him. My nurse always calls mine in and if I call the pharmacy and they tell me I have no refills left (do it too often) then they call my cardiologist and it is refilled promptly. Waiting like that is not only uncalled for but dangerous! I would find out what is going on in that office and start an investigation of my own. I hope everything works out for you. Take care, Jeanette.

Jeanette W's November 14 reply to Judith C's November 13, 2001 - Hi Judith, I would not wait to see the doc. I would call them and explain to them that you are having edema problems (swelling of hands and feet) and that you need to be seen as soon as possible. If you can't get in within a day or so, go to the ER! It sounds like your med isn't working. I am on Lasix and take 60mg in the morning. I have never heard of Amiloride so I can't tell you if the dose you are on is too little or not but by the way you are describing the way you feel, I would say so. Please get in to see a doc quickly. If you are having edema, you need to be seen so you don't get worse and end up in the hospital! Please take care and God bless, Jeanette.

Fred D, November 14, 2001 - Hi, Can anyone tell me if Social Security disability payments are subject to federal and state income taxes? Also, are company disability payments taxable?

Sid K's November 14 reply to Jack D's November 14, 2001 - Greetings Friend Jack and Fellow forum participants, I thank Jack for his excellent, sensible, rational response. At least he's an agnostic and not an atheist. I will continue my research on this oral chelation matter. I can recall reading a book by nutritionist Dr. Gary Null, in which he highly recommends intravenous chelation for dealing with heart and circulatory problems; But who's to say that Dr. Gary Null knows what he's talking about? Am I becoming one of those cardio-agnostics too? Oh my!

Sid K's November 14 reply to Cheri S' November 13, 2001 - Hi Cheri, Although I get most of my meds from the Veteran's Administration (thank goodness), I make it a point to ask each of my doctors for free samples. I save the samples (but not past their expiration date) and use them when I am late in ordering refills from the VA. Most doctors will give you free samples if you ask for them. My PCP loads me up with handfuls of the stuff each time I go for a checkup. Keep this in mind, okay? A speedy and permanent recovery to you!

Mike W's November 14 reply to Sid K's November 13, 2001 - Hi Sid, I agree absolutely with Mad Jack. It's a pretty masterful blend of snake oil, mixing facts, beliefs (as distinct from facts), myths, and plain ol' baloney with a message blended to smooth perfection - to sell a product! If this guy spent as much time and energy doing something truly useful besides making money off people's fears and suffering, I would probably even like him. As I said to you in my e-mail, this kind of human "predation," which it is to me, deserve a special kind of torture.
     Don't get me started on how our whole society is now based on the snake oil pitch, from every kind of product up to and including the media "news" which in the current environment is doing it's best to make sure we sit in front of the idiot tube endlessly watching as we feel the world is crumbling around us as we get sold this week's TV sitcom and deodorant. I said don't get me started. Oh well?! ;-)
     Peace and health (and hopefully a genuine life for us all), Mike Wafkowski.

Karen D's November 14 reply to Cheri S' November 13, 2001 - Hi Cheri, Please do what has already been suggested and find a new doctor. Also, when you need a prescription refilled, please don't wait until you are down to your last pill to call it in. Most insurance companies will allow you to get a refill 5 to 7 days before the 30 day supply has run out. Our pharmacy will call the doctor if there are no refills left. They will also give my husband a small supply of pills to tide him over if there is ever a problem with a refill. I hope you find another doctor soon, Karen.

Davida S' November 14 reply to Fred D's November 14, 2001 - Hi Fred, When my husband was in the same boat: receiving disability and company paid disability in the same year, it was taxable (all of it). The company benefits are taxable and are considered income. Anytime you have income you have to file taxes for that year and include everything, even federal disability. How much you pay will be based on your total annual income and how much tax you have already paid. If you have paid taxes on your company benefits already, it shouldn't be too bad. There is a tax calculation form for federal disability, which will let you know how much of your disability income is taxable - either all or a percentage. My husband only received SSA disability for 3 months last year. This year, since he and I file jointly, I am sure I will have to include his disability benefits for the 12 months. How much of it will be taxable I do not know. I suspect all of it.

Jon, November 15, 2001 - Hi everyone, I will be late with posts today. I have to leave in a few minutes. Sorry, Jon.

Joe S' November 15 reply to Fred D's November 14, 2001 - Hi Fred, SSD is not taxable if you have no earned income. According to Social Security, earned income is any monies earned working outside the home. Inheritance, Lotto winnings and monies earned from an at-home business don't count against you. I have gone through all of these this year. The only thing I lost was Medi-Cal, but I got MediCare last March so it all worked out, Joe S.

Rick M, November 15, 2001 - Hi, I have some interesting news about Coreg. Several weeks ago I was feeling about as low as I have ever felt with no energy, no appetite, and no interest in anything. My stomach was in revolt and I started thinking of how we CHFers with our clusters of afflictions like diabetes, arthritis, sleep apnea, etc,..., often take medications which help one part of our body, but disturb another.
     I had been taking 500mg of Naproxyn for arthritis for about 20 years. To protect your stomach against ulcers, you also take Cytotec. I'm not certain but I think the doctor who originally prescribed these medications has long since passed away. I was feeling so bad that I just stopped taking these pills. My stomach problems promptly went away but my neck pains promptly returned; I figured I could live with that.
     I saw my CHF doc and he approved of my dropping the Naproxyn but he also cut my Coreg from 25mg twice a day to 12.5mg twice a day. I came out from under my cloud and started feeling human again. When I saw him yesterday, he told me that was my new dose and further stated that they have discovered that the former higher doses were not necessary. Tests have shown that the lower levels are just as effective. I urge those of you who have suffered from Coreg side effects at higher doses, to check and see if this will work for you.

Scott Brown's November 15 reply to Cheri S' November 13, 2001 - Hi Cheri, You do not want to be without your Coreg. I keep 5 days in reserve - a little at work, a few doses in the car, just in case. Your cardiologist may not have received the messages from the nurse. I find that doctors are so busy you need to help them a bit with managing your medications. Know how many you have left when you go to see them. Make sure you have enough until next time you see them. Even a good doctor could get confused by how many pills you have left. Good luck.
     To Sid K, I have been very fatigued on Coreg, especially in the afternoons. Some days I feel like sleeping right after I get up. I find the caffeine in a cup of coffee or tea is enough to combat the sleeping urge. Some people don't like the idea of taking caffeine but it works wonders for me.

Bernie's November 15 reply to Jason's November 10, 2001 - Hello Jason, I was diagnosed with DCM and atrial fibrillation in 1979. They tried to cardiovert my heart to sinus rythm but were unsuccessful 3 times. The cardioligist said this would be due to the length of time that I had been in chronic atrial fib. My heart was also enlarged so I was told to remove myself from work and sports, which I did not do. At the time I was told I had about 4 years to live without a transplant.
     The years went by not without incident. By working in the forests I would not go on blood thinners so I had what they call a cardiac event, two blood clots, one in my kidney and one in my lung. In an echocardiogram in 1991 two of my heart valves were leaking - another round of being told my time was short.
     To cut to the quick, I am now age 48 with an EF of 20%, a heart size of 88mm and valves leaking severely. The cardiologists say one day at a time. I went through all of the feelings you have because nobody could give me any answers. I take all the standard meds, including 75mg of Coreg daily but I have to believe God's grace can keep you going since I am still active, although I still ride the emotional roller coaster. All I can do is provide the limited knowledge I have and offer you my prayers, Bernie.

Ben B's November 15 reply to Davida S' November 14, 2001 - Hi, I think there is some formula for determining how much of your SSD is taxable, based on half of the amount. I don't think anybody has to pay taxes on the full amount. With double incomes you will have to pay on more and of course you don't have to pay payroll taxes (FICA) on SSD. As far as private disability benefits, it depends on whether you or your company paid for the benefits. My short-term disability benefits were not taxed because I paid the premiums but my long-term benefits are taxed. Still, with the tax advantages of disability, take home pay is more with 2/3 of my income than with the full thing.

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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