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

Jon 1-1      here we go again
Al A 1-1      intro
Art D's 1-1 reply to Bill B's 12-30      welcome to Jon's Place
Duane Clink 1-1      low heart rate troubles - any ideas?
John B 1-1      intro, questions about EF & more
Rieale 1-1      new year wishes
Sigmund B's 1-1 reply to Tony's 12-27      BP differences
Doris R's 1-1 reply to Joshua's 12-30      ACE inhibitor concerns
Jon's 1-1 reply to Doris R's 1-1      ACE inhibitor concerns
Chirsty 1-1      intro, dietary questions
Luc D 1-1      new year wishes
Sarah F 1-1      will be at chat room Thursday the 4th
Brian 1-1      is low sodium worth it?
Mary Lou 1-1      new year wishes
John Len's 1-1 reply to Terri's 12-30      where is RTP?
Doug K's 1-2 reply to Art D's 1-1      checking in, e-mail change
Dave A 1-2      seek CHF specialists, have questions
Karen K's 1-2 reply to Brian's 1-1      salt subs with potassium chloride
Jan S 1-2      strange sensations in feet and lower legs
Brenda C's 1-2 reply to Chirsty's 1-1      ice cravings & more
Carol W 1-2      cholesterol meds & appetite questions
Donna Z's 1-2 reply to Brian's 1-1      low sodium pains
Sally's 1-2 reply to John Len's 1-1      RTP
Danny 1-2      question about belching, sort of
Terri's 1-2 reply to John Len's 1-1      RTP
Maxine 1-2      intro, seek CHF doc in my area & more
Henry T 1-2      spontaneous recovery of CHF
Jon's 1-2 reply to Henry T's 1-2      spontaneous recovery of CHF
David A's 1-2 reply to Karen K's 12-30      high potassium levels possibility
Bill D's 1-2 reply to Jan S' 1-2      blood "pooling" and more
Bill B's 1-2 reply to Art D's 1-1      what is missed, chat, work & more
Terri 1-3      work and disability options questions
John Len's 1-3 reply to Terri's 1-2      in the olden days,...
Vee's 1-3 reply to Jon's 1-2      myocarditis, CHF cause & treatment questions
Jon's 1-3 reply to Vee's 1-3      CHF cause & treatment
Maureen 1-3      to have a transplant or not?
Henry T's 1-3 reply to Jon's 1-2      thanks for the reply
Terri L 1-3      no comfort lying in some positions
Jon 1-3      page updates
Mike J 1-3      update, Coreg question
Tracey C 1-3      my cat now has DCM too :-(
Bill D's 1-3 reply to Terri L's 1-3      discomfort lying in some positions
Ben B's 1-3 reply to Maxine's 1-2      what to give up & what not to give up
Jon 1-5      posts
Sox Nelson 1-5      e-mail address change
Joe S' 1-5 reply toTerri's 1-3      lying on left side, blood pressure question
Terri's 1-5 reply to Terri L's 1-3      lying on left side
Cristina L's 1-5 reply to Terri's 1-3      lying on left side
Mike J 1-5      an enjoyable doc visit, statistics
Charles K 1-5      does anyone get numbness or tingling through their body?
Maureen 1-5      thank you, great response & more
Donna Z's 1-5 reply to Maxine's 1-2      functional limits
Kathy 1-5      questions - EF, Disability, work, life span & more
Kathy's 1-5 reply to John B's 1-1      local rehab program is great
Bob's 1-5 reply to Maureen's 1-3      heart transplant experience
Sharon P's 1-6 reply to Charles K's 1-5      tingling in legs
Maureen's 1-6 reply to Bob's 1-5      interested in LVAD experience & more
Julie T 1-6      seek LVAD experiences
Doris R's 1-6 reply to Charles K's 1-5      tingling and numbness
Joe S 1-6      weird things CHF-wise
Laura 1-6      new CHF treatment
Jon 1-8      page updates
Brian's 1-8 reply to Karen K's 1-2      eating low sodium successfully & more
Joshua Tilton 1-8      CHF specialists & HGH questions
Jon's 1-8 reply to Joshua Tilton's 1-8      CHF specialists & HGH
Doug K's 1-8 reply to Charles K's 1-5      and to Doris - tingling and numbness
Donna Z's 1-8 reply to Laura's 1-6      heart jackets, LVADs & artificial hearts
Jeanette 1-8      hope everyone is well & more
Lee 1-8      seek fatigue fighting tips for cooking & more
Elsie L 1-8      is oxygen good for class 4 CHFers?
Susie O's 1-8 reply to Charles K's 1-5      "episodes" of tingling, numbness & more
Jon's 1-8 reply to Susie O's 1-8      "episodes"
Vee's 1-8 reply to Jon's 1-3      get frustrated with docs & more
Jon's 1-8 reply to Vee's 1-8      frustration I understand
Vee 1-8      CHF docs, DCM, life span, insurance & more
Jon's 1-8 reply to Vee's 1-8      CHF docs & more
Claire E's 1-8 reply to Charles K's 1-5      tingling & numbness, lying down & more
Jon 1-8      Don's low sodium cookbook is now for sale
Jon 1-8      SCD and ICD book also out
Jon 1-10      Oops! and thank you
Joe L 1-10      seek Orlando, Florida CHF doc
Linda 1-10      seek others with restrictive cardiomyopathy
Carol M 1-10      update - not so good
Jon's 1-10 reply to Vee's 1-8      CHF cause statistics
Joe S' 1-10 reply to Doug K's 1-8      numbness & tingling, eating out
Tracey C 1-10      update, pulmonary artery pressure question
Fred's 1-10 reply to Terri's -13      disability and employers
Jon's 1-10 reply to Vee's 1-8      more CHF statistics
Jon's 1-10 reply to Tracey C's 1-10      pulmonary hypertension information
Sarah F 1-10      be in our CHF chat room Thursday evening at 7
Brian 1-10      seeking a low sodium mozzarella & have questions
Joe L 1-10      more frequent PACs - should I worry?
Sharon P's 1-11 reply to Jon's 1-8      got the low-sodium cookbook!
Sharon P 1-11      heat & humidity questions
Karen D's 1-11 reply to Joe L's 1-10      Orlando CHF doctors
Pete E 1-11      free shipping offer on Don's cookbook!
Donna Z 1-12      new Pensylvania CHF support group
Teri S' 1-12 reply to Sharon P's 1-11      cruising to hot, humid climates
Vee's 1-12 reply to Jon's 1-10      DCM statistics
Jon's 1-12 reply to Vee's 1-12      DCM statistics
Joe S' 1-12 reply to Sharon P's 1-11      heat and humidity
Edith T 1-12      chemo-induced CHF - can I get better?
Charles K 1-12      numbness and tingling, thanks
Don Gazzaniga 1-12      my low sodium cookbook
Jean C 1-13      edema, looking out for yourself
Tony's 1-13 reply to Rick M's 12-28      having BP machine calibrated
Bill D 1-13      Coreg doses, seek opinions
Jon's 1-13 reply to Bill D's 1-13      Coreg doses, one experience
Jon 1-15      seek CHF doc in Ohio, posts

Jon, January 1, 2001 - "Except the Lord build the house, they labour in vain that build it: except the Lord keep the city, the watchman waketh but in vain." Psalm 127:1.
     A new day begins. Fill it with love. Jon.

Al A, January 1, 2001 - Hi, After reading some of the problems that people are having, I consider myself a very lucky guy. After 2 open heart surgeries in the past 21 years and having cardiac arrests both times, my wife is sure that God has some mission for me to fullfill before passing on to another life. Hopefully, this is true. A new doctor that I have now informed me on my first visit that all people die sooner or later. It is his opinion that I will die sooner. So much for VA doctors. <g> I have more good days than bad, and after 72 years I feel most fortunate to have enjoyed such a wonderful life. My CHF has slowed me down some but I refuse to let it consume me. This is my first adventure to online exposure, so forgive me for rambling so much. Happy New Year too all of you, Al A.

Art D's January 1 reply to Bill B's December 30, 2000 - Hi Bill, Well, I'm one left over from a few years ago here and still come back and read all the time. I don't post because there is way more knowledge at this site than I have. You made a statement you could maybe help someone; well, I'm beyond help! I'm 55 years old and also a retired cop with 26 years of service. Maybe we could get together over a cup of coffee and "Yea! A donut!" someplace. My bio is posted for you to read but it sounds like you have all that I have plus are lucky enough to have more as well.
     It was a very nice friend who e-mailed me and wanted to make sure I touched bases with you. You see, here we all take care of each other. It is truly a big family here. If you are looking for contacts, you came to the right place. Everyone here is wonderful and willing to help, and if there is something we don't know, Jon usually does, you can bet on that. I myself would like to invite you to talk to each one of us as talking is also good medicine and you will learn a lot from this bunch. I assure you of that, they're all good people. If it's the "10-4s" and "UD-10s" and "PIAs" and "B&Es" that ya want to talk about, I'm your man because I was in all that.
     I must say I am a little calmer now than I ever was, but I like to think I can "cuff 'em and stuff 'em" with the best still, but I choose not to. <g> Okay Bill, I can tell you that the worst adjustment for me was going from 13 cups of coffee a day down to 2. No one ever said CHF was going to be fun! Yeah, there were a few other adjustments also. Drop me a line and we will get a little more specific. 10-4, over and out, buddy. Your friend, Art.

Duane Clink, January 1, 2001 - Hi, I am having a lot of trouble with low heart rate (38 bpm). I had this last year and went into the hospital without doctors finding an answer. When my heart slows down I gasp for air and have to get up (this almost always happens when lying down). I have gained 20 pounds since last year and that is what the heart doctor wants to blame. Working with my family doctor, we are cutting my Coreg dose down. Last year we stopped my Lasix. Thanks for listening. I will take any suggestions, Duane.

John B, January 1, 2001 - Hi, I am 46 and just had a serious heart attack. I just got out of the hospital after 2 angioplasties and 4 stents. I'm just starting to learn all I need to know, and have many quesions. My cardiologist said my EF was "45-50 out of a maximum of 60." I am having trouble interpreting this, after having read a web page about EF. Does this 45-50 out of 60 mean I have an EF of 45-50%, or an EF of 75-83%? The article I read called it LVEF, for left ventricular EF. Is that the regular EF, or is it a special measure of only part of the heart?
     My insurance company has rejected my referral for cardiac rehab because I did too well on the stress test. I was told that the stress test is the only "evidence" they consider. Any hints on what would help me in an appeal of this denial? I look forward to learning more and to getting better. This web site looks to be a great resource. I am looking forward to hearing your views and comments. Best wishes, John B.

Rieale, January 1, 2001 - Hi, I just wanted to wish everyone a wonderful and healthy new year. I know we've all been through a lot in the last year, but with God's help and our own determination, I have faith that we will live long and happy lives.

Sigmund B's January 1 reply to Tony's December 27, 2000 - Hi Tony, I've recently discovered that my BP can vary as much as 10 points, depending on whether I am sitting up or lying down. It solved a long running dialogue I've been having with my cardiologist over the disparities that occurred when I measured BP versus when he took it. So keep that in mind - it may not be necessarily applicable to your situation but it's worth checking out. Have a happy and healthy New Year. The same to Jon and all the forum guys and gals, Sigmund.

Doris R's January 1 reply to Joshua's December 30, 2000 - Hi, I have DCM and CHF, diagnosed August, 1998 with an EF that went from 10% to 30%. Since then, among my other meds, I have been taking 2.5mg Vasotec twice daily. This month I began a generic alternative to Vasotec called enalapril at the same dose. With the exception of what I was calling an adjustment period, I seem to be responding well enough but now I am a little more concerned. Perhaps I should have continued with Vasotec? Also, for my Vasotec, my pharmacy receipt in the "Why am I taking this drug" column reads, "for high blood pressure, heart failure, or to help diabetics prevent kidney problems." Must you be diabetic for this drug to prevent kidney problems? It's just got me wondering. Kindness, joy, love and happiness to you all, Doris R.

Jon's January 1 reply to Doris R's January 1, 2001 - Hi Doris, Enalapril is equivalent to Vasotec and although a different reaction is always possible, it is very rare. I take mainly generics myself.
     Enalapril is not meant to prevent kidney problems (nephropathy). It is meant to ease the heart's workload. I did not know that the manufacturers of enalapril were allowed to make the kidney protection claim. It was discovered by accident during a trial that Ramapril can prevent some kidney problems in people with diabetes. After taking enalapril, there is an increase in kidney blood flow but the kidney's filtration rate is unchanged.
     However, this is not its main purpose and as far as I know neither drug has actually been tested in a trial to see if this change in kidney disease risk is valid. Anytime a result is quoted from a trial in which that result was not originally meant to be tested - it was just "noticed" - we have to be very cautious. Some of these results have since been shown not to be true (like amlodipine for CHFers), when tested in trials designed to study them specifically. I say all this because I can't find this claim in the online information about enalapril. Jon.

Chirsty, January 1, 2001 - Hi everyone, This is my first time here. I think it is so cool. I have CHF and arrhythmia. It all started when I was pregnant with my second child. I couldn't breathe and couldn't lay flat. I was gaining 7 to 10 pounds a week. I got up to 270 pounds. When I was 7 months pregnant they sent me to Vanderbilt hospital, where I was in ICU for about a month; Then they moved me to a different room. I got an ICD. I have been shocked a total of 20 times.
     My baby is fine. He is a boy, and going to be 2 years of age in March. For the past 2 years I have had a lot of struggles but the Lord has brought me through. I have a great cardiologist. He is more like a friend than a doctor. I have been doing well for the last few months. I struggle to stay within my fluid limit, which is 2 liters. I am a big ice eater. Does anyone else have this problem?
     I have came up with a lot of low sodium recipes of my own, and my family loves them. :-) I am having a problem with finding a low sodium pizza recipe. Does anyone have one? I would like to here from anyone who can relate. May God bless you all.

Luc D, January 1, 2001 - Dear friends, I want to wish you all a Happy New Year 2001 from your Belgian friends Luc, Dorine, Liesbeth, and Michiel.

Sarah F, January 1, 2001 - Hello everyone and Happy New Year, I have been enjoying this site for nearly 2 years and have made many friends who are now a large part of my day to day life. The new chat on Wednesday night is very difficult for some of us to come to see a group of us who are getting together this Thursday, January 4th at 7:00 PM Eastern Standard Time in the CHF chat room. Everyone is welcome, especially new folks. See you then, Sarah.

Brian, January 1, 2001 - Hi, I got the new book on low salt cooking and was looking for low sodium cheese. Helluva Good makes one in which they use potassium chloride as a salt substitute. The label shows sodium as 10mg, potassium as 140mg. Does this seem right?
     I wonder if this low salt thing is really worth it. It is so depressing shopping for low salt items. Except mail order they are almost impossible to find. When I talk a store into carrying they just throw it in with the regular items, so no one knows it's there and then they drop because it doesn't sell. I made the sandwich rolls from Gazzaniga's book and boy, are they good?! I tried baking on parchment paper instead of a greased pan. That was a mistake because they stuck to the paper; A first for me. It seems like a great book with real recipes. I talked to a physician who thinks 500mg per day isn't realistic. Hmmm?

Mary Lou, January 1, 2001 - May we live as God intended, in a world at peace and the awareness of His love in every sunset, every flower's unfolding petals, every baby's smile, every lover's kiss, and every wonderful, astonishing, miraculous beat of our heart. A very Happy New Year to all!

John Len's January 1 reply to Terri's December 30, 2000 - Okay Terri, You got me. I lived in North Carolina as a kid for a few years and lived in some of the big cities such as Wilson, Elm City, Rosebud and even in Bridgeton on the water but you have got me with the RTP and the suspense is driving me nuts. Where is RTP?

Doug K's January 1 reply to Art D's January 1, 2001 - Hello Art, Good to see your post. I've been wondering how you are doing. Say, did we get enough snow? <g> I am like that joke going around about the person who writes about loving the snowfall until it becomes a daily chore, which it has done. It can quit anytime now for me. We should have a nice increase in lake levels this coming spring, eh?
     I also wish to announce the changing of my e-mail address. I decided to let the family have the phone line back and went to cable Internet service. I held off as long as I could but it seems inevitable. My new address is I hope everyone has had a good New Year's Day and hope you have a good 2001. I will be in touch. Hi to Bill D, Luc, and all of you fellow CHFers at Jon's Place as well. Bye for now, Doug.

Dave A, January 2, 2001 - Howdy, I have just been released from the hospital and have been told that I have class 4 CHF. They say I have a large hole in the septum between my atria, and my right atrium and mitral valve both leak. The previous by-pass done in 1991 is 90% plugged. I got very little other info and nothing about CHF. My meds are 2.5mg Norvasc, 200mg metoprolol, 10mg Altace, Lipitor, and 8mg nitro patches.
     I live in a small town 2 hours north of Toronto where there are no cardiologists. Does anybody know of a good CHF doc between here and Toronto, or in Toronto? I would like to have some kind of an idea of what to expect because all info from the hospital stay was very vague. I am also planning to head for Mexico in 4-5 weeks, if my prognosis is what I am starting to get a feeling it is; Daisies within a year or so - I figure Mazatlan Mexico is as good a spot as any. I would again appreciate hearing about any info on doctors in Mazatlan. Thanks for the help.
Question: Whats the difference between God and doctors?
Answer: God doesn't think He's a doctor.

Karen K's January 2 reply to Brian's January 1, 2001 - Hi, I read with interest your post regarding using potassium chloride as a substitute for salt. My doctor has warned me against using salt substitutes which use potassium frequently as a substitute. If you'll check back to 12/30/2000, you'll notice my post where I ended up having a high level of potassium in my blood and my doctor prescribing some nasty medication for me to take to help get rid of the excess potassium. If I were you, I would certainly check with my doctor before using potassium as a substitute. Just my humble opinion, Karen.

Jan S, January 2, 2001 - Hi, I'm looking for some answers to a new symptom I've been experiencing. In the last 6 months I have developed a feeling of "hot feet" and now "hot ankles." The best answer I could get from my primary care doc was that possibly some of my medication causes my blood to pool in my extremities (feet). Has anyone else experienced this sensation? It is not painful; it is just a sensation of heat radiating and I don't want to ignore it if it needs attention. I take an ACE Inhibitor, lotensen, Cardizem, Lanoxin, Coumadin, zyrtec, Zoloft, Zanax, sometimes Ambien, Flonase, Flovent, Servent and some low dose HRT, and 350mg ferrous sulphate twice a day was added to my regimen several months ago. Could that be it? Happy New Year, Jan S.

Brenda C's January 2 reply to Chirsty's January 1, 2001 - Hi Chirsty, I thought that I was the only one who has become a big ice eater. At first I thought it had something to do with the hot weather, however here it is the middle of winter with snow on the ground and I'm still eating ice. Last Spring when I was hospitalized on 5 different occasions for CHF, I would beg the nurses for ice. After becoming aware of my "addiction" to ice I asked one of the nurses why I craved it so much. She told me that most heart patients do crave ice but she didn't know why. Maybe Jon can help shed so light on this for both of us.
     Happy New Year to all. My resolution this year is to be a better person and be grateful for all that I have. Peace, love and improved health is my prayer for everyone here at Jon's Place.

Carol W, January 2, 2001 - Hi, As the new year begins I am feeling much better than I have in at least 2 years. My appetite is back, even though I have lost almost 10 pounds, and I have more energy. When I comment on this to friends, they ask me what I am doing different or what meds I have changed. Finally I realized that I have stopped taking mevacor because of digestive problems. Could the mevacor have taken my appetite? Has anyone else stopped their cholesterol medicine and had this reaction? Just wondering, but boy, does it feel good to enjoy eating again?! Happy New Year to everyone, Carol W.

Donna Z's January 2 reply to Brian's January1 , 2001 - Happy New Year All, I found some lunch meat and cheese that is low in sodium. Ask your grocery store if they carry Boar's Head lunch meat. I have found a low sodium roast beef (40mg per 2oz) and a Lacey Swiss cheese that is 35mg per oz. They also make a no-salt Swiss that is 10mg per oz and a few others.
     Brian, yes a low sodium diet is very important. Just remember every time you go back into heart failure you damage your heart more and more. I for one have no desire to go back into the hospital because of my own doing, plus there are such new and promising things for us. Who knows? In a few years we may all be able to live normal lives again. Yes, I know life seems so boring without all the "good" foods but I'm alive and doing well so I'll trade food for life any day.
     I know it's a pain shopping for low sodium foods but they are out there. You just have to be patient and look for them. I've found a lot of low sodium foods since being diagnosed, even in my regular supermarket, so just hang in there. Keep looking or ask your manager in the market for help locating low sodium foods. Be thankful you're not me! Not only do I have CHF but diabetes to boot so I have a double whammy where food is concerned. In time you can adjust to almost anything. Donna.

Sally's January 2 reply to John Len's January1 , 2001 - Hi, If I am not mistaken, RTP is Research Triangle Park. Maybe if Terri sees this she can confirm it. My son considered applying for a job in that area of Raleigh, North Carolina. I think it's also referred to as the Golden Triangle, for the 3 cities of which the names of the other 2 escape me. Terri, some help here? Ah, got one - Durham!

Danny, January 1, 2001 - Hi, Sometimes when I'm in bed lying on my back air will come bursting out of my mouth and it isn't a burp; I think it comes out of my lungs. I just wanted to know if anyone else had this happen and if anyone could tell me what may be causing it. Is this just another part of CHF?

Teri's January 2 reply to John Len's January 1, 2001 - Hi Jon and John Len, I wasn't trying to confuse you, honest! In the high-tech world, "RTP, NC., 27709" is a very desirable zip code: Short for Research Triangle Park. It's where folks like IBM hang out. That'll teach me to lapse into local jargon when I'm communicating in the global arena! John Len, RTP didn't hit the big time until the 1980s. Maybe you were a kid on the mean street of Rosebud before then?

Maxine, January 2, 2001 - Hi, I was so glad to find all this information on this web site, and I really like the message board. I was diagnosed about 3 months ago. I was really surprised since I have been in good health and exercising but I had been having some difficulty in climbing stairs and hills when walking for the past 9 months. After all the tests, the main problem is my low EF - 16%. So I am on meds and will see my cardiologist in February. I will see my primary care doctor next week. I'm sure glad I have a bread maker. You do not need salt in bread as I found out!
     I live in between Chicago and Milwaukee. If anyone has a good specialist to contact for a second opinion, someone who is a real specialist in cardiomyopathy, please let me know. I am almost 65 but my body has always been one of younger years. I love xc skiing and that is one thing I cannot do, and we have all of this nice fresh snow! I would love to hear from anyone who is similar to my situation.

Henry T, January 2, 2001 - Happy New Year to all, While I haven't posted in months, I am a regular reader and I enjoy what others have to share. I am blessed to be one of the lucky ones, diagnosed with DCM almost 3 years ago. My EF is 15% and I take Coreg, Zestril, digoxin, Lasix, Mevacor, and have an ICD implant but have received no shocks. I have been essentially symptom-free (class 1) and living a normal life of work, family, and graduate school. I recently read the following in a British journal article that I accessed through Medline (PubMed):

     "In the meanwhile, the hemodynamic support of patients with acute left ventricular failure caused by myocarditis should be aggressive, to allow for the possibility of spontaneous recovery. Contemporary trials of treatment in chronic heart failure secondary to dilated cardiomyopathy support the use of ACE inhibitors, beta-blockers, and spironolactone in such patients."

This is the first I've read of "spontaneous recovery." My docs always talk about DCM-CHF as a chronic illness. I wonder if some of us who improve so dramatically really have a chronic illness or whether once the virus that attacks our heart muscle is done and the usual course of meds is successful, some of us may in fact experience a spontaneous recovery. My last echo was done over a year ago and it was up to 40%. I suspect that if I had one today it would be even higher. I have read the studies that strongly warn against stopping meds but I just can't help wondering if there isn't a small percentage of folks who really do regain complete cardiac functioning that would continue without further medical intervention. Just a warm thought for a cold winter's day.

Jon's January 2 reply to Henry T's January 2, 2001 - Hi, Spontaneous recovery certainly does happen but,..., myocarditis is an inflammation of the middle layer of the heart wall. More people with myocarditis than with other heart conditions will recover full or near full heart function if treated properly. I personally think one reason is that myocarditis often hits full-blown, meaning it has less time to damage the heart muscle before treatment. Many of us had our hearts damaged in smaller increments over a long period of time, usually "helped" along by wrong diagnoses and improper treament before our first full-blown CHF episode. So lots of damage happened before we were ever treated for our real heart problem.
     DCM is the heart disease that underlies and causes CHF. CHF is set of symptoms, not a disease. If the DCM is "cured" then the CHF (the symptoms) never comes back, so the CHF is "cured" as well. However, if the DCM - the underlying disease - has damaged the heart's muscle cells or electrical system, or stretched the heart's valves out of shape during its acute phase, then permanent damage has been done. This may cause chronic CHF even though the DCM is "cured." This is especially true for those with ischemic CHF, which means CHF caused by lack of blood flow to the heart. If you have CHF as a result of blood clots (stroke), blockages, or heart attack, you have ischemic CHF and your chances of complete recovery are not as good.
     If you have non-ischemic CHF, you may or may not have a better chance of recovery. It depends on your "subset." Those with chemo-induced CHF usually have permanent heart damage. Alcoholics who quit drinking for good have a so-so shot at recovery over time. Those with viral DCM have a good shot at recovery during the first year after the initial damage (up to 29% according to the limited reports I have found on Medline). Familial DCM is a tough one to call. Like alcoholic DCM, it can go either way. Those with myocarditis probably have the best shot at full recovery because it can be an intense but brief acute episode and if the inflammation does little or no permanent damage, recovery may be possible. That's what Henry's article is stating.
     For those of us with idiopathic CHF (cause unknown), who can say? Most of us are now responding to the treatment in Henry's article (standard CHF meds). However, a substantial percentage of those are only responding in the "numbers" and do not function any better despite the big improvement in numbers. This is forcing CHF researchers to consider that much more is involved in CHF, including muscle dysfunction even in skeletal muscle, involving many of the body's systems for storing and using energy, and converting that energy to work. Please always remember though, that even in a particular subgroup, one person may fully recover and another may go straight downhill and die, and no one knows why. Being in a particular group guarantees nothing - good or bad!
     CHF is not at all understood even today - trust me - it's not! For that reason, many doctors are just assuming that if the numbers look really good, why continue the meds? It seems logical on the face of it and for a few patients, this is actually proper. However, the selection of patients who will not suffer from meds withdrawal is the sticking point. No one yet knows who will be okay and who will careen right back into CHF, possibly worse than ever due to the meds withdrawal.
     So in my typical rambling way, I come to an answer of sorts. <g> Yes, up to maybe a third of DCM patients will recover competely or close enough to call it complete. However, those patients are largely in certain subgroups of CHFers, and even in those subgroups, no one knows who is "well" and who is just "well maintained" on their meds. That makes stopping meds a tricky business, period. How's that for a non-answer? <lol> Jon.

David A's January 2 reply to Karen K's December 30, 2000 - Hi Karen, Regarding high potassium, I experienced the same situation you are going through a little over a year ago. My K level would bounce to above normal levels, yet I felt okay and had no symptoms common to elevated potassium. I went through the diet aspect too, thinking that since it was summer time I was eating too many tomatoes. So I stopped eating them and anything with high potassium levels. Also, when I looked at the back of food labels for nutritional info, I was not only looking at sodium but potassium as well.
     The clinic I was going to was mystified about this potassium elevation. I was put on a prescription for sodium bicarbonate tablets and took 650mg tablets twice a day. On two occassions I was sent out to pick up that wonderful cherry flavored barium type mixture that had to be drunk during a one hour period. By the way, I read the instruction label on this stuff and it can be administered from either end, with the most effective end being the other one. After drinking that, it was supposed to withdraw potassium from your intestines and thus lower your blood level. That mixture was hard to drink, especially the last half. Besides, what it did to your stomach and intestines after it was in you was a real experience.
     After I drank this mixture, the next day I would go for a blood test to check my potassium level. The blood levels did come back lower but barely below high normal. The bottom line to this experience was that food or potassium intake was not the problem. The problem for me was the medication lisinopril (zestril). On rare occasions, this medication can do funny things to your kidneys and potassium levels. In my case that is what was happening. Needless to say, I was taken off lisinopril and am instead taking isosorbibe and hydralazine in its place. My potassium level has been withing normal range now for a number of months so this medication switch helped this problem. If you take lisinopril or a drug similar to it, talk to your doctor about this possibility. Happy New Year to all, David A.

Bill D's January 2 reply to Jan S' January 2, 2001 - Hi Jan, Blood "pooling" anywhere can be a problem. You might get a "clot" which might lead to one of your veins getting blocked. Perchance the doctor who prescribed the ferrous sulfate is an Indian? Are you anemic? Maybe you could cut back on the ferrous sulfate and see if your hot feet and ankles went away? Is the zyrtec for an allergy? Bill D.

Bill B's January 3 reply to Art D's January 1, 2001 - Hey Art, I still love the "gutbombs" too, and decaf is hard to take but I am doing it. I do miss the police work but not as much as I miss being a pilot. Flying was my passion in life but the FAA guys are so close-minded about CHF and MIs. I am sorry you lost your daughter. I have 2 girls and I don't know how you deal with that. I thank you for your reply and all of you who have e-mailed me with your good wishes. I look forward to the chat on Thursday too. God bless and thanks, Bill B.

Terri, January 3, 2001 - Hi, Was anyone besides me fired once the 12 weeks of FMLA (Family Leave Act) leave expired? If your doc still hasn't put you in the "permanently and totally disabled" category, do you have recourse through the EEOC (Equal Employment Opportunity Commission) if you believe you were discriminated against in violation of the ADA (Americans With Disabilities Act)? I know this isn't a lawyer's group but maybe someone has experience or just an educated layman's opinion. I'll even respond positively to a hunch!
     PS. The cities of the Triangle (Golden, Research, whatever) are Raleigh, Durham, and Chapel Hill. Despite the name of the regional airport, there is not a Raleigh-Durham. Winston-Salem and Fuquay-Varina however, are bonafide combined North Carolina place names. So ends Miss Terri's very last geography lesson, I promise!
Jon's note: Explanations of acronyms in parentheses are mine. Terri likes them - she should have been a cop! <lol>

John Len's January 3 reply to Terri's January 2, 2001 - Hi Teri, It is worse. I was a teen in the late 40s to early 50s in my Rosebud (honest, it's between Wilson and Rocky Mount) days. Ancient times by today's standards. ;-)

Vee's January 3 reply to Jon's January 2, 2001 - Hi Jon, Are there some types of myocarditis from causes besides an infection or illness like rheumatic fever; For instance, just inflammation due to an unknown cause? If so, what's the treatment? Are anti-inflammatory meds useful in addition to meds used to control the CHF? The reason I ask is that I'm still trying to come to grips with what caused my DCM and do whatever I can to prevent any recurrence.

Jon's January 3 reply to Vee's January 3, 2001 - Hi Vee, You're wandering into territory better covered by a doctor, perferably one familiar with your case personally. The causes of myocarditis are many, and partly unknown. Each myocarditis occurence is unique even if it's a second occurence in the same person, and may be treated differently, unlike CHF. One myocarditis therapy always used is rest, plain and simple. People with myocarditis - unlike CHFers - are advised to rest in a big way to prevent the damage that causes CHF down the road. Sorry I can't help more. Maybe you should try the Cleveland Clinic message boards for this one. Jon.

Maureen, January 3, 2001 - Hello good friends out there, I bet some of you out there thought maybe I dropped off the face of the earth or something. I just had a lot of changes in personal and health life. I was offline due to a move we had to make in July. I have had my disease for 9 years now. They didn't think I would make more than 5. My disease is straight up familial inherited cardiomyopathy; no CAD, strictly muscle deterioration.
     I am asking any of you out there who have had to face the decision to transplant or not to share your thoughts with me. I am now running out of time with this heart and will have to decide. I am going through the rigorous testing to be listed in the event I go that route. I always thought it would be a simple decision but it is far from that. I am afraid that I will be trading one set of problems for another set that will leave me with the same quality of life that I have now. For 9 years I have been living a half life and although I have done well with that, it is not what I would choose. My husband and children of course want me to get a new heart, and I want to be here for them. By the same token, I want to feel good and whole, but the drugs you have to take just to stay alive may really cut my quality of life. I just don't know, so any thoughts you all might have may help me find the right choice.
     Thought for the day: If the Lord is your co-pilot, switch seats.

Henry T's January 3 reply to Jon's January 2, 2001 - Hi Jon, Thank you for your timely and very complete response. Your insights and information really make this a terrific site. Thanks again and be well!

Terri L, January 3, 2001 - Hello, This is my first visit and post to this site. I have PPCM, diagnosed in March of 1999. My last echo in September of 1999 showed an EF of 30%. My <Vo2 tests are within normal range and I can do all my daily activities with little problem.
     I wondered if anyone can relate to a problem that I have been experiencing. When I lie down at night, certain positions bother me. It feels like my heart isn't beating the right way. This happens especially on my left side. Sometimes it feels that way no matter how I lay. I have to sit up for awhile to make the feeling go away. I asked my doc and he didn't ever hear anyone describe this before and kind of blew me off. Has this happened to anyone else before? Thanks, Terri.

Jon, January 3, 2001 - Hi everyone, The following pages on my site have been updated:

  1. Windows Wallpapers
  2. Links page (low sodium foods)
  3. CHF Surgery
  4. CHF Surgery 2
  5. Heartbytes

Mike J, January 3, 2001 - Hi Jon, I hope you had a great Christmas and a happy new year. This is an update from me that I wanted to share with everyone. I went yesterday to the cardiologist and he said I had no fluid retention or any problems with my heart other than my DCM. He put me on Coreg to increase my EF and the dose is only 3.125mg. He wants me to take it once at night. Since I am on 10mg Norvasc and Cozaar twice a day, what is your feeling about Coreg? I have read your pages on it but I just wanted to get anyone's ideas on it. I feel good and am still working out in the gym 4 times a week. Just to update you, my EF by cath was 40% and he agreed with me that was the more accurate measurement and not the 35% by echo. He said he used the echo because insurance companies didn't question it and it was a good guide for him to use. Three times it has been 35%. Again, thanks for your site and God bless!

Tracey C, January 3, 2001 - Hi everyone, Well, my cat has joined my mother and myself, and has been diagnosed with cardiomyopathy. Granted he's 14 years old but it still hit me about as hard as when I found out my own diagnosis. He'll have an echo tomorrow and will begin meds. I'm assuming they will be similar to our medications. I realize it's way off the topic here but I needed a sympathetic ear. Thanks for listening, Tracey.

Bill D's January 3 reply to Terri's January 3, 2001 - Hi Terri, Many of us have problems sleeping on our left side. I go to sleep on my right side or my back. Then somtimes I wake up on my left side. I can't explain it but your cardiologist should! Maybe you should get somebody else who doesn't blow you off, Bill D.

Ben B's January 3 reply to Maxine's January 2, 2001 - Hi, Although I am of course not suggesting you do anything against doctor's orders, I want to encourage you not to assume you have to give up every activity you consider enjoyable forever. This may include xc skiing. In his book on congestive heart failure, Dr. Marc Silver specifically describes ski trips as one of the activities many of his patients remain able to do.
     If I told you the number of things I was assured I would have to give up forever, that I have since been able to do, you might be surprised. For awhile there I convinced myself (with a little external encouragement) that I couldn't fly in an airplane! I don't mean pilot an airplane, I mean ride in a pressurized cabin. How ridiculous. That may be true for some patients but not most. I'm not saying rush out and try everything, just don't feel you have to assume you are going to sit in a rocker wrapped in a shawl for the rest of your life. You don't sound like the kind of person who will do that; I was just trying to give you some encouragement.

Jon, January 5, 2001 - Hi everyone, I'll post posts tonight. I am enjoying the last of my daughter's winter break with her. ;-) Jon.

Sox Nelson, January 5, 2001 - Hi, This is just a change of e-mail address, thanks.

Joe S' January 5 reply to Terri's January 3, 2001 - Hi Terri, I not only can't sleep on my left side, I cannot sit on the left side of a couch and lean on the cushion. Jon covered this a long time ago. If I remember right, it seems like when you do these things you're putting more pressure on your heart. I've got a question for anyone: Do you have any clues as to why my blood pressure skyrockets over the holidays? Joe S.

Terri's January 5 reply to Terri L's January 3, 2001 - Hi Terri L, I'm so glad you posted! I always sleep on my right side now because my heart seems to make odd little squishy noises and even to skip beats when I lie on my left. I haven't mentioned it to my doc because I didn't want to be laughed at. He's never been a jerk so far, but I've had remarkably bad luck with the medical profession in general so I didn't want to give him a chance to disappoint me. Maybe someone will learn the real answer and post it. For now, just know that you're not crazy and you're not alone. Good luck from the other Terri.
     PS to Jon, How's that for an acronym-free post? ;-)
Jon's note: My wife works in a hospital, my brother's a cop - I practically speak in acronym-language with the family. <g>

Cristina L's January 5 reply to Terri's January 3, 2001 - Hi Terri, I also feel the same pounding you do when lying on my left side. I get frequent PVCs and think they are just more pronounced on that side. I also always try to fall asleep on my right side.

Mike J, January 5, 2001 - Hi Jon, just one more thing I wanted to post. When I saw the cardiologist on January 2, I questioned him about the 85% chance of living 10 years. His response was that the statistics he gave me were based on old journals and info on people just like me. He said he had to give me that prognosis because that was all he could base it on. I enjoyed listening to his explanation and he was very sincere when he told me that with new medicines and technology, life expectancy is growing almost daily. We had a long conversation and I was very impressed with his knowledge. I see on this site sometimes people having trouble with doctors and I spent over 45 minutes talking to him, which was very refreshing. I just wanted to share a good moment and wish everyone on this site the best. Jon, God bless you and all that you do. Mike Joye.

Charles K, January 5, 2001 - Happy holidays to everyone, I just have a quick question. Has anyone else who suffers from CM and CHF had periods of numbness or tingling throughout their body? Over the last 2 years - since I have been diagnosed with CM - I have had short-term periods of this. Thanks.

Maureen, January 5, 2001 - Hi, I want to thank everyone out there from the bottom of my heart for the overwhelming response to my dilemma. We can never underestimate the value of sharing from the heart with others. We truly do have an invaluable resource here: each other. Mostly it was comforting to know that other people have had the same thoughts as I. It would be so nice if science could eliminate the rejection problem, which would eliminate the drug aftermath. In the meantime, I am trying to keep all my options open until I am able to come to grips with the right decision for me. I know that when Jesus tells me it is time to go, I wouldn't hesitate for one minute. At the same time, I would feel I have left so much undone on this earth. I guess that is part of the human condition - thinking that we are indispensable. Well, I guess I will send this post off now. Thanks again everyone and until my next philosophic brain storm, I leave you with my infamous thought for the day: God put our eyes on the front of our faces so we could see where we are going, not where we have been.

Donna Z's January 5 reply to Maxine's January 2, 2001 - Hi Maxine, I show dogs with my CHF specialist's approval and that means running around a ring for short periods of time. I am feeling pretty good right now so as long as I'm doing so well I want to live as normal a life as possible. I don't want to wake up someday and think why didn't I do that while I still could; but always check with your physician before doing any exercise. We all have the same thing but each person's response to meds and exercise, and how we bounce back from CHF can be different. Donna.

Kathy, January 5, 2001 - Hi, Thanks to those of you who replied about CHF specialists in the Durham North Carolina area. I don't have to worry about school systems; I'm moving to be nearer my married daughter.
     Maybe some of you can help with other questions I have. I can't get in to see the doctor until February 13. I had CHF and cardiomyopathy in 1986 and have thickening of the heart muscle and heart enlargement since then but my BP is controlled by meds and in general I have no other problemes with my heart. My cholesterol is 180 and triglycerides are 70. On December 19 last year my doctor told me a heart cath showed that I had a virus in my heart in the past 2 years, since the last cath procedure. My ejection fraction is now 20% and the doctor told me there is nothing medically that can be done. He just kept saying I need to call him if I ever pass out and need to guard against another episode of CHF (daaa). He is a cardiologist, not a CHF specialist.
     It felt like a death sentence and I basically left in a state of shock. Later that week, my father unexpectedly died of a massive heart attack and I am just now regrouping. I have started a heart rehab exercise program and am trying to lose weight. He had started me on the beta-blocker Toprol since I didn't tolerate Coreg due to allergy and asthma problems.
     My question is if any of you have had similar experiences. From reading posts from this group and other Internet sources, beta-blockers seem to improve ejection fraction rates. What does a virus do that makes a beta-blocker not effective in my case? How can you tell if you have a virus in the heart so I don't have this again, go undiagnosed, and lose more ejection functionality? What about low ejection fraction rates makes a person pass out? I live alone, so this is scary.
     I'm still working full-time but others of you are on disability with an EF less than 30%. I don't want to go on disability but am I putting myself at risk by continuing to work? I am tired all the time, have shortness of breath with exertion and come home from work and take a nap. What is a normal life expectancy for folks with low ejection fraction rates?
     I understand that my doctor is a source for the answers but waiting another 6 weeks for answers is difficult. I believe that your experience is valuable and I can learn what to accept as answers from my doctor and what other questions I may need to ask when I finally get in. I appreciate any help you can give me. Kathy.

Kathy's January 5 reply to John B's January 1, 2001 - Hi, I'm in Dayton, Ohio and our local Heart Association has a program for heart rehab that costs only $20 per month with no contract. Anyone can use the facilities to exercise 6 days a week. I've started this week. There is a "trainer" who walks me through the machines, stretches, cool-downs and monitors my blood pressure and heart rate while working out. Once a month they send a written report to my cardiologist. There is also a EMT in the area with us all the time. I don't know if other local Heart Associations have similar programs but this is a great program and very affordable!

Bob's January 5 reply to Maureen's January 3, 2001 - Hi Maureen, I had a heart transplant on April 25th, 2000. I only had to live 2 years with CHF before my old heart deteriorated to the point that I had to make the decision of living or dying. This was a no brainer. It was so automatic for me that I don't even remember it. As a bridge to transplant I had an LVAD installed. The LVAD surgery and recovery was worse than the actual transplant surgery. However, when I awoke from the sugery I felt 100% better; I could breath. The LVAD surgery was on January 20. Having the LVAD allowed my body to rehab some before the transplant surgery on April 25. This was a walk in the park. I was transplanted and released in 9 days. I returned to work 2 weeks later. I am currently taking 21 different drugs and minerals each day. This amounts to 40 pills a day, 2 injections per week, 4 diabetes tests per day and insulin injections per day. This sounds like a lot but once you establish a routine, it's no big deal. I feel better than I have in 3 years. The new set of problems are nothing compared to being out of breath from brushing your teeth. I enjoy a quatily of life almost equal to pre-CHF days. I will be glad to answer any of your concerns if possible.

Sharon P's January 6 reply to Charles K's January 5, 2001 - Hi, I have tingling too, but usually only in my lower legs and feet. I try to make sure I am always sitting with correct posture and don't cross my legs. It only takes about 3 minutes for the tingling to begin if I forget and don't follow the above. I'm guessing it happens due to restricted blood flow. Sharon P.

Maureen's January 6 reply to Bob's January 5, 2001 - Hi Bob, I would like to hear more about your LVAD experience. I hear that they are trying to perfect them to be permanent devices instead of bridges to transplant. I try to follow those kinds of breakthroughs also because even if the rejection problems are solved, there will still be a shortage of organs. I am glad your heart transplant went so well. You must have gotten a very good match. It sounds like you never really struggled about whather or not to go with transplantation and I think I wouldn't either if I hadn't been sick for so long. It really does wear you out. In any event, I am still undecided but am certain when the time comes I will be able to decide. Thought for the day: God put me on this earth to accomplish a certain number of things. Right now I am so far behind that I will never die.

Julie T, January 6, 2001 - Hi, I am looking to talk to anyone who has had a left ventricular assist device (LVAD) implanted. I had mine implanted November 15, 2000. Thank you, Julie T.
Jon's note: Don't forget the forums listed on my Links page

Doris R's January 6 reply to Charles K's January 5, 2001 - Hi Charles, Yes, I have numbness every day to some degree; usually in my limbs. Until recently I believed it was because I crossed my legs and feet at the ankles and rested my chin upon my palm. Since Terri and I have talked about it a bit lately, I notice I don't have to be doing anything in particular to experience this numbness. I could be holding a book or just sitting and relaxing. Is that the case with you or is it more extensive? Doris R.

Joe S, January 6, 2001 - Hi, As most of you know I have had a bad heart now for over 57 years. Other things which seem to get the ol' ticker acting weird are like yesterday when I was trying to hang a picture and even had a battery powered screw driver, but the screw hole was over my head. I was pushing hard and within moments the ol' heart started aching with bad aches in the center of my back - #21 disc - which always acts up when the ol' ticker is bad. Other weird things are that my hand and the back of my neck get freezing cold when I exert myself. My stomach gets very bloated when I eat wrong. I can't lift anything over a few pounds over my head. I enjoy showing people my freezing neck; I'm weird. Does anyone else have weird things happen to them they want to share? Joe S.

Laura, January 6, 2001 - Hi everyone, I have learned some information that sounds interesting for those of you with DCM, as my husband has. There is a new procedure they are doing in phase 1 trials at the University of Pennsylvania hospital called a heart jacket. It is a mesh sack that is placed around the heart to keep it from enlarging further. It basically supports the heart so it won't continue to stretch. It has been done on 12 people in Germany and Australia, and 2 people in the US. The trial is the ACORN trial and so far it sounds promising. They have very strict guidelines of course for this trial but it will be worth watching. God bless to all and I hope you find this information useful!

Jon, January 8, 2001 - The following pages on my site have been updated:

  1. CHF Specialist Listing page
  2. Windows Wallpapers
  3. Heartbytes

Brian's January 8 reply to Karen K's January 2, 2001 - Hi Karen and thanks, I didn't consider that potassium would be a problem. My mother in law had trouble with this but I always thought most people needed more, not less. We took our 17 year old son out for his birthday yesterday. The place was packed and there wasn't anything someone with CHF should eat. It's unbelievable what most people eat. I tasted my wife's potato soup and it was so salty my mouth burned all night. Everything is high fat and high salt. I know we have to keep trying but as everyone knows, it isn't easy!

Joshua Tilton, January 8, 2001 - Hi folks, I love getting on this site but it is depressing when I have to shut down. It's almost like having to leave a good friend! Well, as Jon has impressed on everyone, I have decided to find a CHF specialist. I was really shocked there are none listed in Louisiana, since CHF seems to be rampant in this state. The closest I could find one is in Houston. So I'll be going to see a specialist at the Texas Heart Institute.
     Also of some interest, a friend just strongly recommended a supplement known as HGH and said it's a miracle. Does anyone on this site have any info on this stuff? He said his cardiologist prescribed it for him. Well, I'll just sit here in the swamps till I hear from y'all. Just trapped a big ole nutria for supper. I'd better pick some greens to go with it! Joshua.

Jon's January 8 reply to Joshua Tilton's January 8, 2001 - Hi Joshua, Please don't go only by my site's CHF doc listing. I have certain requirements for being listed on my site, including me being able to contact the doctor without a long-distance phone call (e-mail preferred obviously). This limits listings but is necessary since I cannot afford to make lots of long-distance phone calls to get information. Try for more listings, for starters.
     HGH is Human Growth Hormone and this is very powerful stuff that can be dangerous if not used wisely. It is also very expensive if it is the real thing and is given by injection. You can read some articles about it at my New CHF Meds page. I think there may be more info about it in my downloadable text articles. Jon.

Doug K's January 8 reply to Charles K's January 5, 2001 - Hello Charles and Doris, I have DCM and CHF, and was diagnosed with those in 1995. Since 1998 however, I have also been diagnosed with having TIAs or mini-strokes. In my case, they believe I have autoimmune problems that cause my blood to clot while in my body. In fact, I have recently had another episode and am about to have more testing done this next week.
     I will just say this to anyone who has numbness and tingling, or visual or dizziness problems without having put pressure on a particular spot of your body to put it to sleep - get to the hospital if it lasts longer than 5-7 minutes. With our hearts not pumping as well as they should, blood clots can form in the heart and be pumped out to either the lungs as a pulmonary embolism, or to the brain or another organ where they can be deadly or disabling.
     My point is, don't mess around with it. Talk to your doctors about these episodes. He or she will know what questions to ask and what tests to do if they think you are having TIAs. I myself have many episodes of varying types but fortunately no damage that they can find so far. Good luck to you both.

Donna Z's January 8 reply to Laura's January 6, 2001 - Hi Laura, They are using this heart jacket but right now it is only being used on people who are having surgery to correct a valve problem and even then they are only using it if you are a class 3 or higher. I know this information is true because I go to the University of Pennsylvania and talked with my CHF specialist about it. In Israel they have implanted a HeartMate 2 the size of a walnut in a man as a permanent solution to heart transplant so keep your fingers crossed on that one. It sounds promising and another hospital in Philly is working on a new artificial heart so there are a lot of new and exciting things coming for us. Donna.

Jeanette, January 8, 2001 - Hi all, I hope all had a great holiday and a wonderful New Year as I did. God has blessed me again! Not only am I feeling fine but am in the process of moving to a new apartment near my best friend in the whole world and her family. They have been like family to me for over 15 years and now I can be near them. They moved 2 hours away from me over 2 years ago and I don't get to see my friend much but now I am only 10 miles from her. God is good! I just wanted to say hello to everyone and hope all are doing well. I will be going to my cardiologist this week and will let all know how things go. He wants to put me on a cholesterol-lowering drug. Talk to you all soon, Jeanette.

Lee, January 8, 2001 - Hi, A cheery hello to all of you. I have CHF and am looking for ways to make things easier, especially cooking. I cook everything from scratch except for frozen veggies sometimes. I have class 4 CHF with an EF of 14%. I have a stool I sit on in the kitchen but cooking still exhausts me. I would appreciate any work-saving tips anyone has and I will try to share some of mine. Thanks a lot. This is the by far the most useful page to me on the web. Thanks Jon! Lee.

Elsie L, January 8, 2001 - Hi, Is oxygen a help or is it ever given to persons with class 4 heart failure?
Jon's note: This article and the 2 following it are about oxygen for CHF. I use it but was only class 3 when given it initially.

Susie O's January 8 reply to Charles K's January 5, 2001 - Hi, I have tingling and numbness in my fingers up through my arms; also a feeling of confusion and disorientation with headache. The first time I felt like this I went to the ER where they did tests to rule out a stroke. Their thoughts at the end were anxiety attack. I disagreed then and still do but don't know what is causing it. I don't have these sensations all the time but when I get one I usually have about 3 episodes and then they go away for awhile. Is this anything like you?

Jon's January 8 reply to Susie O's January 8, 2001 - Hi Susie, If you have a CHF specialist, please get a ride to his office immediately the next time you have such an episode (don't drive yourself). Don't bother with an appointment, just go. The reason is that if he can run tests during or immediately after such an episode he has a good chance of discovering the cause, which could possibly be serious. It doesn't sound like an anxiety attack to me. Jon.

Vee's January 8 reply to Jon's January 3, 2001 - Hi Jon, Thanks for your wise and considered response. I guess I'm just kind of frustrated with so many questions and so few answers. The best answers I've found so far are at your site. Probably 95% of what I've learned about this disease has been through my own efforts, not from my health care providers.

Jon's January 8 reply to Vee's January 8, 2001 - Hi Vee, Sorry I'm not more help on this but learning about CHF itself takes all my energy so I don't even try to get into a deeper understanding of its causes than I have now. I do understand about self-effort being the best teacher. It was largely my own frustration with doctors' rotten communication that brought these pages into being - that and a swift kick in my behind from Jesus. <g> I'm always hoping others will take such an interest in a specific heart-related subject that they will start their own web site so there will be one less thing about which I have to say, "I just don't know." ;-) Jon.

Vee, January 8, 2001 - Hmmm, I was only partway into my post and inadvertently sent it on its way (by hitting enter, I guess). Anyway, here's the rest of what I was trying to say:
     You keep saying get a CHF specialist, but it's not always an option. I'm in an HMO and the place I go to has 2 cardiologists. I think mine is pretty knowledgeable but he's sure a poor communicator. I'm sure the bulk of his work is with coronary artery disease and heart attack patients. Even if he consults on lots of CHF patients, I'll bet very few of those have non-ischemic DCM. For that matter, how many do even the specialists see, except for the large, university-based heart centers? I think I read somewhere that there are only about 50,000 people with a DCM diagnosis, a very small subset of those with CHF. My primary care doc looks to be fresh out of his residency and is a really, really nice guy but what does he really know? He seems astonished and delighted that I'm doing so well and shakes my hand a lot. I think by most everyone's estimates I was supposed to be creeping pretty close to death's doorway by now, if not with one knee actually over the threshold. Instead, to quote my favorite doctor (Dr. Seuss, that is), I'm in pretty good shape for the shape I'm in, or something like that. Anyway, thanks for letting me ventilate!

Jon's January 8 reply to Vee's January 8, 2001 - Hi Vee, That statistic about DCM numbers seems way off base from what I have read in the past 6 years, although I would have to dig back into my stuff to find specific reports. I am asking my own CHF doc by e-mail today how many non-ischemic CHFers he sees and will let you know. He is not currently at a university-based hospital although he is making a change to one soon - a move with which I strongly disagree for personal reasons.
     Although it is not always financially possible and I understand that, I will keep hammering on the "Get a CHF doc!" line over and over. It is simply the best way to get the best treatment of which I know. To make the point, my last primary care doc is an internist who treats a sizable number of CHFers. I disagreed with him on some very important aspects of CHF care and testing philosophy. I bluntly asked my CHF doc his opinion and he was - as always - very honest, saying that he agreed with me and not with my internist. I can hardly have a primary care doc who thinks he knows about CHF but disagrees with my very experienced CHF specialist on points important to my own care. This is one of 2 reasons I am changing primary care doctors. I will be going from now on to a primary care doctor who does not treat CHFers. My CHF doc can take care of my CHF and my other doc the rest of my health concerns, and nevermore shall the two cross paths. <g>
     I am very glad to hear that you are doing well. I agree comepletely that specialist or no specialist, doctors are often poor communicators and we need to learn as much as humanly possible for ourselves. I also understand the frustration of having health care choices restricted due to insurers. For a few years I was in such a plan. Luckily, my labor union has had a very elastic plan the past 10 years and my wife's plan picks up most of the slack. I am fortunate in this, I know I am, and I am thankful for it. I wish I could suggest an alternative so that you could see a specialist, but I just don't have one. Another, "I don't know!" from Jon. ;-) Still, venting never hurts! Jon.

Claire E's January 8 reply to Charles K's January 5, 2001 - Hi Charles and everyone, A happy new year to all! I get alot of numbness and tingling too, often associated with ice cold extremeties. It seems to come from staying in one position too long. It varies like so many things do, as to where and how bad it is. Sometimes when I'm on the computer it happens in my right hand when I'm using the mouse. It can also come from resting my chin on my hand, sitting too long, etc. I've gotten pretty used to it and just shift around or get a mug of warm tea if it's my hands.
     Reguarding lying on my left side, I find that's a big no-no for me too. I start shooting PVCs, get really short of breath even if I am well propped up and feel like I am suffocating. Also,does anyone else find they need to sleep with their arms extended over their heads to kind of lift up their ribs a bit? It seems to make me a lot more comfortable; That and my collection of about 5 pillows for positioning. Thank goodness hubby has a good sense of humor! Peace and love to all, Claire E.

Jon, January 8, 2001 - Hi everyone, I meant to put this up last week and forgot. Don Gazzaniga's low sodium cookbook is now out for sale! It is available in bookstores and also at his web site at The cookbook's title is "The No Salt, Lowest Sodium Cookbook." For those wondering, I pulled Don's link off my Links page due to a problem with the code on his page. He said he was getting it fixed and I hope he lets me know when he does so I can put the link back! Jon.

Jon, January 8, 2001 - Hi, There is also a book out by a Sudden Cardiac Death survivor who now has an ICD. I don't know how much of the book is directed at that particular experience and how much is her overall life's story, but you can read about the book here. Jon.

Jon, January 10, 2001 - Hi everyone, Sorry for the absence. My operating system died and although it could have been fixed, I didn't figure out the real problem until well after I had fdisked amd formatted, so I had to reinstall everything (my scanner's software went berserk). The new computer and software everybody bought for me last year is my life saver, folks. What took 5 to 7 days before now only takes 1½ days, so a huge thank you to all my contributors! You make this site go, no doubt about it.
     Anyway, I did lose nearly 10 messages and posts from Monday afternoon and evening only, so you may have to re-send a few. I'll work on getting caught up but it may take me a day or two. Jon.

Joe L, January 10, 2001 - Hi, Does anyone know of any good CHF docs in the Orlando, Florida area? My wife and I are considering relocating down there from New Jersey. However, we both want to make sure there are some CHF specialists in the area before doing anything else. Thanks, Joe.

Linda, January 10, 2001 - Hi, I am looking for others with CHF and a diagnosis of restrictive cardiomyopathy to compare notes. Because my cardiac problems are a result of radiation treatments I received in 1972, not too much is known about treatment for this problem. I am very interested in meeting others in similar circumstances. I currently take Lasix, spironolactone (Aldactone), Cozaar and Imdur for my heart condition; But my cardiologist admits that he is not sure if any of this medication is helpful.

Carol M, January 10, 2001 - Hello everyone, I hope you're having a better new year than I am. I went to the doctor yesterday to get the results of my blood work and CT scan. It seems that now I have liver and kidney problems too. I have cysts on my liver and real high BUN with my kidneys. My MD says it may be from my meds. Even at that, he increased my Coreg dose.
     I also had very high cholesterol so he put me on 40mg Zocor. One good thing about it was that my BP was up really high for the first time in his office (310/220) so he increased my Lasix to get it down. Since my BP is normally very low he said that he couldn't treat the high BP because when it was down I would bottom out. He says I have a very narrow window and it's a delicate balancing act.
     Please God, no more. It seems like the harder I try the behinder I get. I've always been told that the Lord never gives you more than you can take and that what he gives you is to make you stronger. Well I don't think I want to be around for what I'm being made stronger for. Thanks for letting me vent my frustration. Love and God's blessings to all, Carol M.

Jon's January 10 reply to Vee's January 8, 2001 - Hi Vee, Here's what my CHF doc replied about ischemic versus non-ischemic CM cause:
     "In most transplant series, it's 50-60% with coronary artery disease, 40-50% with non-ischemic etiology. There's a smattering of valve disease cases. The further under 50 years of age, the more likely that is it is a non-ischemic cause. In Veteran's Administration Hospital series where male smokers predominate, it's an even greater percentage of people with coronary disease."
     Of that 40-50% with non-ischemic cause, I have read many varying statistics - that anywhere from 20-60% are idiopathic (cause unknown). My CHF doc is Director Of Cardiac Transplantation at the busier of our 2 local transplant centers. For what it's worth, Jon.

Joe S' January 10 reply to Doug K's January 8, 2001 - Hi, I've had a bad ticker for 57 years now and it seems to me that numbness and tingling are simply part of what happens. In my humble opinion, I don't really think it is serious. If it was I'd be dead by now.
     Regarding eating out, have you noticed that many restaurants, especially fast foods like McDonald's, which used to be considered very good health wise now advertise they have found out how to make their food better from the inside (chemicals)? Oh well, at least some foods are getting better, like bacon. Maybe someday Campbell Soups and Swanson's will wake up but don't count on it. The doc said that foods like Swanson's helped kill my dad a few months ago, Joe S.

Tracey C, January 10, 2001 - Hi Jon, Do you know the ranges for PA pressure during a cath? They're looking into PPH (primary pulmonary hypertension) for me now and my PA (pulmonary artery) pressure is all the information I have at this point. I had an echo last week which showed that my left ventricle has shrunk but the right ventricle is now outside of normal limits. Could there be any other explanation for the right suddenly increasing other than PPH? Sorry, I don't meet with the doctors until next week and this is driving me a bit nuts. Thanks so much, Tracey.

Fred's January 10 reply to Terri's January 3, 2001 - Hi Terri, I was on short term disability with my employer and was terminated when I came back to work even though I had some restrictions and additional tests needed to be done. It is pretty complicated. I told my supervisor that I thought I had a disability and that I was to see the doctor on October 12. I was terminated on October 11, 2000. I had worked for this company for nearly 23 years. They have denied my disability benefits. I have an attorney and have notified the State Insurance Department and they are looking into this debacle. Ain't corporate America a piece of work?!

Jon's January 10 reply to Vee's January 8, 2001 - Hi, Unknown to me, my CHF doc also had a nurse who specializes in software looking up stats for me on his own practice. Keep in mind that many categories overlap so the numbers will never exactly add up, and I didn't write everything down. Still, this gives some idea of the varied causes of CHF and how they are distributed in one fairly local population. We went by ICD-9 codes. Here's what she came up with when querying their database:

  1. Ischemic CM = 945 patients
  2. Idiopathic CM (cause unknown) = 524 patients
  3. Peripartum CM = 24 patients
  4. Hypertrophic CM = 105 patients
  5. Alcoholic CM = 27
  6. Hypertensive CM = 95 patients

As you can see, this practice really does specialize in CHF. <g> For what it's worth, Jon.

Jon's January 10 reply to Tracey C's January 10, 2001 - Hi Tracey, I went ahead and re-wrote a Lancet article on pulmonary hypertension in general for you. It does contain an answer to your question, and can be read as a text file online here. You can use the font-size button (a big A) on your browser to enlarge it if the type is too small. I hope it helps, Jon.

Sarah F, January 10, 2001 - Hi again, I'm sorry this post is so late but the days got ahead of me. Hopefully, this isn't too late. The chat we had last Thursday was a big success. We even had 2 new folks there. We have decided to meet again this week too and everyone is welcome. It's at 7:00 PM in the CHF chat room. See you then, Sarah.
Jon's note: We need a time zone! Then, if it stays a popular time, let me know and I'll change the time shown on the chat page for you

Brian, January 10, 2001 - Hi, I was reading about a low-sodium mozzarella cheese. Does anyone know where to get it? This was at the Salt Free Life site, but their user posting isn't as nice as Jon's. I'm still working on the low-salt eating thing. Can anyone give me some comments on the recipes at Jon's site? No negatives please, just recommendations! I like to cook!

Joe L, January 10, 2001 - Hi, I have recently been experiencing a major increase in PACs. I used to get about 3 to 5 PACs (Pre-Atrial Contractions) an hour that I could feel. Now I am getting anywhere from 15 to 20 PACs an hour that I can feel. My first thought is this is due to stress since I recently went back to work, but could it be a sign my condition is getting worse? Should I be concerned and notify my doc? Any thoughts or suggestions would be greatly appreciated. Thanks, Joe L.

Sharon P's January 11 reply to Jon's January 8, 2001 - Hi, Months ago I ordered Don's low-sodium cookbook via Amazon and low and behold when I returned from Christmas vacation, there it was. It looks great and I'm looking forward to getting started with some of the recipes.

Sharon P, January 11, 2001 - Hi, I need some assistance please. My husband and I have a cruise planned to the Panama Canal this April and I'm worried about the heat and humidity. Can anyone share their experience with vacations under this type of weather conditions? I sometimes have trouble here in California with the heat, and there is little humidity to contend with. We went on a cruise a couple of years ago and I didn't have any trouble with the sodium issue, I was just cautious, but the humidity part really concerns me. I have cardiomyopathy, an ICD, and I'm very stable with an EF of about 50%. Thanks for your comments.

Karen D's January 11 reply to Joe L's January 10, 2001 - Hi Joe, My husband Bill, has CHF and his doctor is Dr. Patrick Mathias of Cardiovascular Associates. They have offices in Orlando and in Kissimmee, where we live. We have been very pleased with his knowledge and understanding of CHF and with his care. Dr. Mathias' address and phone are listed on this site in Jon's list of CHF specialists. You may also hear from Bill Drummond, who used to live in the Orlando area and went to another CHF specialist in Orlando. I just wanted to let you know that there are at least two, if not more, groups in the area. I hope you're not moving to get away from the cold weather. We have had unreal temperatures for about a month! E-mail us if we can be of more help, Karen Deitemeyer.

Pete E, January 11, 2001 - Hi, I would like to offer visitors to Jon's site free shipping on Don's low-sodium cookbook. My toll free number is 1-888-685-5988 for people to order from. Let me know if you have any questions. God bless, Pete Eiden.
Jon's note: Pete's web site is here

Donna Z, January 12, 2001 - Announcing a new CHF support group in the Philadelphia area:
The Congestive Heart Failure Support Group
Chester Counrty Cardiology Associates
915 Old Fernhill Road
West Chester, Pennsylvania 19380
Date: January 30th, 2001 from 5:30 - 7:30 PM
     All are welcome. If you need directions, please e-mail me privately. Our first meeting will just be to get to know one another, to explain what we hope to accomplish over the next year, and to tell you all about upcoming speakers. Donna.

Teri S' January 12 reply to Sharon P's January 11, 2001 - Hi Sharon, I can only tell you what my experience was last year on a cruise. We cruised the Mexican Riviera and frankly, it was pretty bad for me. I have CHF and CAD, and was advised by my doctor to quit traveling to hot, humid climates. I have always been a sun worshipper so this was such a blow but being the strong-willed gal I am, I thought, "I'll be fine; A few extra Lasix and I am on my way." Needless to say, it didn't work out that way. I spent less than 4 hours on shore at any given port due to the heat and humidity. It was the worst thing I have ever experienced. I live in Seattle and am used to humidity but this was totally draining. I ended up spending 3 whole days lying in bed in my cabin - not exactly what I had expected. My doctor was only too happy to say, "I told you so." Make sure you tell the cardiologist your plans and see if extra diuretics are needed. I have to take extra doses of Lasix when I fly and sometimes Zaroxolyn to boost the Lasix. Good luck on your cruise, Teri S.

Vee's January 12 reply to Jon's January 10, 2001 - Hey Jon, Thanks you for your speedy research on my question! :-) I looked up that number of 50,000 non-ischemic cardiomyopathy patients. It's from the NIH site in a fact sheet called "Facts about Cardiomyopathy" and "Data Fact Sheet: CHF in the United States, a New Epidemic." They don't say whether 50,000 is the number of new CM cases each year or the total number in the USA? I suspect it's the former, otherwise your busy doc alone must be seeing a sizeable percentage of us. <g> The NHLBI data report is from 1996, the CM report undated. Even if this stuff is not too current, it seems to be the source of much that's cited out there, including survival stats and it's pretty scary stuff.

Jon's January 12 reply to Vee's January 12, 2001 - Hi Vee, I'm really glad this came up because it sent me on a hunt for statistics and I now realize there aren't any good ones. About statistics on heart failure and cardiomyopathies, data age is always an issue. Data like the NIH uses is usually gathered over a 4-year period, then it takes about a year to get it sorted and reported. That makes most of their CHF stats 5 years old before we ever see them. After all - it's the government doing it! <g> Data reported in 1996 was probably gathered from 1990-1995 or is even older.
     In private databases, most patients are listed under several categories. This is why the nurse at my doc's called me on the phone and we went through the numbers with her sitting in front of a terminal, constantly querying their database as we went along. Twenty-two of the 24 PPCM cases at my doc's were actually listed under different headings, with only 2 under PPCM as direct cause. I did not include viral cases from my doc because he doesn't do a cath unless it is actually necessary; and the only way to be sure CM is viral is with positive antibody findings to a specific virus in heart tissue taken during cath. However, most cardiologists call idiopathic cases viral 90% of the time because it pains them to say, "I don't know."
     I typed the above and then looked up the NIH reference, which I found at I have no idea where they got their definitions or their numbers but they disagree with the medical textbooks I have used for the past 3 years. According to this NIH publication, the 50,000 number includes all idiopathic DCM, HCM, PPCM, alcoholic CM, restrictive CM, chemo-induced CM, and viral CM patients in the USA. My doc's numbers show that the NIH numbers are not realistic.
     Of course, statistics vary widely depending on source. The American Family Physicians' conference in 2000 stated that there are 2 million CHFers in America today. The AHA put that number at 4.7 million in 2000, the same year. At the ACC Scientific Sessions 2000, CHFers were put at anywhere from 4 to 5 million in the USA. So you can see how variable statistics are in the realm of specific heart diseases. None can be entirely trusted, and yes that includes any I give! ;-)
     Truthfully, I can't find any online statistics on "cardiomyopathy" except the NIH numbers, although I expect an extended Medline search would pull some up. The lack of statistics is probably because of the classification/overlap problems mentioned earlier. It's nearly impossible to separate patient populations at that level using existing codes. However, I am including some data from the 2000 American Heart Association statistics, partly to help put the numbers in perspective and partly to satisfy you statistic lovers out there. <g> Note that if the 50,000 number were correct, over half of them would die every year from their CM alone.

Cardiomyopathy (ICD-9 code 425)
Total mention mortality53,000
Hospital discharges44,000
87% of cases are congestive or dilated cardiomyopathy
Congestive Heart Failure (ICD-9 code 428.0)
Total mention mortality285,000
Hospital dischargesMale438,000
From 1979 to 1998, these discharges increased 159.4%
About 4,700,000 living Americans have CHF today (2000 stats)

Based on the 44-year follow-up of the Framingham Heart Study:


Joe S' January 12 reply to Sharon P's January 11, 2001 - Hi Sharon, I don't know what part of California you live in with low humidity but the coast sure is high. I moved from Santa Maria about 16 months ago because the humidity was really affecting me. It has been my experience that when a person has a problem with fluids in the lungs, then breathing fluids cannot help. I moved to the Eastern Sierras and all my breathing problems have gone away. I think you would have problems with heat and humidity. Just a thought, Joe S.

Edith T, January 12, 2001 - Hi, I have CHF. I am slow and get tired easily. Is it possible to get better? Mine was caused by chemo.

Charles K, January 12, 2001 - Hi, Thanks everyone for your input on numbness and tingling. It has been getting worse. I am waking up in the middle of the night with my hands and arms so numb and cold they can't move, so I called my doc to see about getting an earlier appointment. I was not scheduled to go in till Febuary for an echo and checkup. I'll let you know what he says.

Don Gazzaniga, January 12, 2001 - Hi Jon, As you can tell, I've been busy. Yes, the book is now out with volume two - all bread recipes, about a hundred of them - probably due out by the end of this year. A great many dollars from this book will be donated to heart transplant research. I've already donated much of the advance paid by the publisher. Your visitors can obtain an "overnight" copy from Pete Eiden at Healthy Heart Market. Pete tells me he's paying for the shipping. Keep up the good work, we all appreciate it very much. Don.

Jean C, January 13, 2001 - Hi, I just want to say it's good to talk to you all again and to stress that we need to know as much as possible about our own CHF. I went to the emergency room a couple of months ago gasping for breath but with no swelling in my feet or ankles. I told them the pressure felt as though I were pregnant and ended up with some very expensive intestinal x-rays and being written off as eccentric or crazy.
     I just spent the last 2 days in the hospital on intravenous Lasix (sent there from my doctor's office by ambulance) and lost 10 pounds. My echo shows my EF to be 35-40%, which hasn't changed for 18 months and I'm being even more careful about sodium and fluid intake. It's frustrating to know what is going on in your body and not be able to convince the medical profession. I am also using an inhaler to help with breathing. They were not able to get all the fluid off my lungs but I do have an increased dose of Lasix now.
     Jon has written in The Manual and other places that edema can occur in places other than your ankles and feet. Along with him, I am a living example. My message is to hang in there and don't let busy professionals tell you that you're imagining things or hyperventilating because your feet aren't swelling. Good luck to everybody and a late happy New Year! Jean C.

Tony's January 13 reply to Rick M's December 28, 2001 - Hi Rick, You suggested that I take my BP machine to the doctor's office to have it checked. Thanks for the suggestion. It's been a long time since I have done this, and it is good advice to anyone who takes their BP at home. A happy new year and a great 2001 to all.

Bill D, January 13, 2001 - Hi Jon and everyone, So far 3 of my cardiologists want me to get a pacemaker. It is because they want me to continue taking 50mg Coreg every day. I've been taking 50mg Coreg since the trials in 1996. Lately it was causing "pauses" in my heart beat, like 10 seconds long pauses! I cut back to 25mg and the pauses went away. I don't see that recommendation coming from SmithKline Beecham, the drug maker. I don't see that recommendation coming from Guidant, the makers of most pacemakers. So where is it coming from? They all say the Copernicus trial proved it. Can anybody shed some light on this? Bill D.

Jon's January 13 reply to Bill D's January 13, 2001 - Hi Bill, My CHF doc and I had a discussion about different Coreg doses and their relative benefits to me. I think most CHf docs want us on the highest possible Coreg dose, but I was also having some problems with the drug and after our talk, we agreed I would cut all the way back to 6.25mg twice a day (slowly). I have worked my way back up to 25mg twice a day and that is where I am staying. My own side efects are almost non-existent at this dose and he is satisfied that I am getting significant survival benefit. I see no critical reason for you to up your dose, especially if doing so requires an implant. In my opinion, it's your call. Of course, I am not a doctor. ;-) Jon.

Jon, January 15, 2001 - Hi everyone, Wow, I checked for posts this afternoon and there were none! I'll see if I can find where they went. :-( I do need to ask if anyone knows of a CHF specialist near Youngstown, Ohio. Please e-mail me if you do. Thanks, Jon.

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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