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

Karen F's 12-1 reply to Sarkis G's 11-30     similar experience
Pat M's 12-1 reply to Rhonda's 11-30     second opinions & more
Jan S 12-1     seek site like this but for cancer, prayer request
Michael's 12-1 reply to Mark's 11-30     stopping smoking
Herbert's 12-1 reply to Mark's 11-30     stopping smoking
Jon 12-1     added some recipes
Jon 12-4     posts
Kim S 12-4     lots of questions
Gail C's 12-4 reply to Mark's 11-30     smoking
Larry's 12-4 reply to Mark's 11-30     smoking
Nancy S' 12-4 reply to Mark's 11-30     smoking
Joseph P's 12-4 reply to Mark's 11-30     smoking
Diane P's 12-4 reply to Mark's 11-30     smoking
Maggie S 12-4     update & more
Stephanie 12-4     panic-type attacks - questions
Jon's 12-4 reply to Stephanie's 12-4     panic-type attacks - a possibility
Mary Beth 12-4     good news update, cardiac rehab
Joseph P's 12-4 reply to Sarkis G's 11-30     INR levels & blood thinners
Nikos K's 12-4 reply to Maxine's 11-24     ICD experience
Krista L's 12-4 reply to Jan S' 12-1     cancer and treatment
Pamela A 12-4     palpitations, doctors & more
Jon's 12-4 reply to Pamela A's 12-4     palpitations, doctors & more
Mike 12-4     paying organ donors
Jon's 12-4 reply to Mike's 12-4     paying organ donors
Amelia 12-4     is this right?
Tracey C 12-4     cold & cough medicines
Lisa's 12-4 reply to Mark's 11-30     smoking
Laura 12-4     what about global left ventricular hypokinesis?
Frank S' 12-4 reply to Mark's 11-30     smoking
Joanne K's 12-5 reply to Kim S' 12-4     arthritis drugs & CHF experience
Judy 12-5     hurts to touch my skin
Brandy's 12-5 reply to Mark's 11-30     smoking
Ruthie A's 12-5 reply to Kim S' 12-4     NSAIDs and arthritis
Nancy S 12-5     update - have an InSync pacer
Joseph P's 12-5 reply to Amelia's 12-4     EPS
Blake I 12-5     paying organ donors
Jon's 12-5 reply to Blake I's 12-5     paying organ donors
Michael's 12-6 reply to Tracey C's 12-4     cough drops and cardiac rehab
Loretta D 12-6     insomnia
Jon's 12-6 reply to Loretta D's 12-6     insomnia experience
Ginger 12-6     update on me and Ryan
Charles S 12-6     post-transplant hand cramping question
Richard M 12-6     intro
Lisa 12-6     specific gene therapy study questions
Gino's 12-6 reply to Laura's 12-4     global hypokinesis
Jon's 12-6 reply to Lisa's 12-6     SERCA
Leslie M 12-7     Baltmore area docs & more
Bill D's 12-7 reply to Loretta D's 12-7     help getting to sleep
Joseph P's reply to Loretta D's 12-7     getting to sleep
Susan's 12-7 reply to Kim S' 12-4     relief for dry hands
Krista L's 12-7 reply to Charles S' 12-6     prednisone post-transplant symptoms
Jon 12-10     still flu-ish
Stephanie Moody 12-10     Disability denial question
Jon's 12-10 reply to Stephanie Moody's 12-10     talking to your federal representatives
Joshua 12-10     trouble sleeping, organ donor pay
Pat M 12-10     chemical stress test questions
Ben B's 12-10 reply to Jon's 12-16     my insomnia theory
Richard Malczewski 12-10     omega 3 oil question
Brandy's 12-10 reply to Blake's 12-5     cardiac rehab & more
Jack D 12-10     organ donor policy
Jon's 12-10 reply to Jack D's 12-10     Britain's policies
Davida S' 12-10 reply to Bill D's 12-7     sleep aid ingredients
Scott T 12-10     thank you all
Joseph P's 12-10 reply to Krista L's 12-7     muscle weakness
Bill D's 12-11 reply to Davida S' 12-10     Tylenol PM and other sleep aids
Jon's 12-11 reply to Bill D's 12-11     Tylenol PM and other sleep aids
Davida S' 12-11 reply to Pat M's 12-10     stress tests
Gino's 12-11 reply to Richard M's 12-10     omega 3 oil and SCD
Cate 12-11     bleeding under skin from itching & scratching
Trish R 12-11     seek transplant experiences & more
Jon 12-11     to anyone with an ICD or heart transplant
Bonnie 12-11     seek CHF doc in southern California
Ruthie A's 12-12 reply to Jon's 12-11     sleep aids
Nancy S' 12-12 reply to Kim S' 12-4     arthritis drug choices
Nancy S 12-12     pacemaker shocks
Richard M's 12-12 reply to Gino's 12-11     seek more trial info from Europe
Cathleen's 12-13 reply to Nancy S' 12-12     little shocks
Cathleen 12-13     Tylenol PM as sleep aid - success
Rick 12-13     intro
Rhonda 12-13     seek opinions
Brandy's 12-14 reply to Rhonda's 12-13     typical CHF
Ben B's 12-14 reply to Rhonda's 12-13     CHF diagnosis
Sharon's 12-14 reply to Scott's 12-10     me too
Sharon's 12-14 reply to Rhonda's 12-13     see a cardiologist quickly & more
Sharon 12-14     questions - Lasix, lying down, going downhill
Jon's 12-14 reply to Sharon's 12-14     Lasix, going downhill
Gino's 12-14 reply to Richard M's 12-12     new treatments, old problems
Michael's 12-14 reply to Pat M's 12-10     chemical stress tests
Michael's 12-14 reply to Bill D's 12-7     Benadryl versus Tylenol PM
Davida S' 12-14 reply to Sharon's 12-14     a possibility
Donna 12-14     do meds doses have to be raised a lot?
Jon 12-14     page updates
Gino's 12-15 reply to Sharon's 12-14     CHF not well controlled
Richard's 12-15 reply to Gino's 12-14     thank you for replying
Vee's 12-15 reply to Charles' 12-6     potassium-induced cramps
Vee's 12-15 reply to Judy's 12-5     weird symptoms
Dorothy P's 12-15 reply to Donna's 12-14     adjusting to meds
Dorothy P's 12-15 reply to Sharon's 12-14     breathing when lying down & more
Dorothy P's 12-15 reply to Sharon's 12-14     different docs
Nancy S 12-15     NSAID use in middle age - questions
Jon 12-15     mailing list and page updates

Karen F's December 1 reply to Sarkis G's November 30, 2001 - Hi Sarkis, I have had an aortic valve replacement too; a pig's valve in 1986 and that replaced with a Medtronic mechanical valve in 1990. I also take Coumadin daily for the valve. Until the past year or so, I was on atenolol (tenormin) for blood pressure control. When I first started taking it, I experienced dizzy spells or lightheadedness, but as my body adjusted to the lower BP those spells went away.

Pat M's December 1 reply to Rhonda's November 29, 2001 - Hi Rhonda, I've been going through a similar experience trying to find answers to my CHF. I had an attack of severe SOB to the point where I was gulping air. My feet are swollen 80% of the time. I went to the ER and they also injected me with Lasix and took blood gasses and put me on O2. Soon I felt better and went home. When I followed up with my PCP he said he thought I also have COPD, and that's why I was so SOB. I told him I wanted a second opinion. Wednesday I will be having a MUGA done that will pinpoint the problem better than the echo. Maybe I am in denial but I'm not going on 3 inhalers a day with no COPD symptoms untill a test proves I need it. I hope this helps. Peace.

Jan S, December 1, 2001 - Hi, I've been coming here since November of 1998. I'm at a good place in my illness and doing well day to day. Today I ask for a favor. Can anyone direct me to similar helpful sites for patients and families with cancer? My nephew has no-dissectable tumor that started in his duodenum and spread through the pancreas and is wrapped around the artery to his liver. He is 37 with 3 small children. He lives in the Northeast and his name is Michael. Any information on clinical trials and all the prayers you can spare will be appreciated.

Michael's December 1 reply to Mark's November 30, 2001 - Hi Mark, I smoked 2 1/2 packs a day back in June when I had my heart attack. I have CHF with an EF of 24 up from 20. The doctor basically told me if I wanted to live and breathe I should consider my last cigarette the one I had just before walking into the emergency room. My cardiologist prescribed Zyban to take the edge off although I had 22 days in the hospital in July. I was completely unable to quit before I got so ill. The rest that helped me to quit is an overwhelming desire to live. I tell everyone who asks, "I didn't have a wakeup call, I got slapped upside the head." I pray everyday also. Best of luck and I will say a little prayer tonight for you.

Herbert's December 1 reply to Mark's November 30, 2001 - Hi Mark, I just sat there at my computer reading and rereading your post. I was just thinking for the longest time about my pathetic experience quitting smoking. Mark, you don't need advice, you need to catch up with the rest of us. I can't wait to see what MaddJack is going to tell you in his post.

Jon, December 1, 2001 - Hi everyone, I added 2 recipes (the last 2) to the dessert section. Jon.

Jon, December 4, 2001 - Hi everyone, Sorry but I've had the flu in a big way. I'll do posts and e-mail as I am able. Jon.

Kim S, December 4, 2001 - Hi everyone, My mom Anne, requested that I ask the people here a few questions. She was diagnosed with severe CHF with an EF of 15% a couple of months ago. She has arthritis in her ankles and knees, and the doc told her to avoid Vioxx and Advil. She says she can't function without it, and Tylenol doesn't help at all. Why is Advil contraindicated, and is there anything safe to take for arthritis pain? Also, with the cold weather, handwashing, and Lasix, she's having extremely dry skin. What are the best moisturizers and lotions? Lastly, I'm wondering what people have planned for Christmas dinner? Thanks, and have a happy holiday season! Kim.

Gail C's December 4 reply to Mark's November 30, 2001 - Hi Mark, Might I suggest you go to Jon's page on smoking? It sure made me think and pray. I asked God to take away my cravings, admitted that I was powerless over nicotine and then found a local hospital that was giving classes to help those who wanted to shake this habit once and for all. By the grace of God, I can say that I have been smoke-free 2 years and 4 months. My slogan is: "I would rather be an ex-smoker with an occasional urge to smoke than a smoker with the constant desire to quit." I smoked for 32 years, one to 2 packs a day depending on the stress and enviroment. It can be done, Mark. I will keep you in my prayers and send positive thoughts your way, Gail.

Larry's December 4 reply to Mark's November 30, 2001 - Hi Mark, I started smoking when I was 12 and smoked for 45 years, up to 5 packs a day. I tried to quit many times over the years but just never would. Well, I have a 2 year old grandson who is my world and I quit because I want to spend as much time with him as I can. I'm sure if you look, you will find the reason you need. Quitting smoking is one of the hardest things you will ever do but it is worth it. A year ago I was told I wouldn't live a year, and a month ago I was told that I had a year to live. Next year I'm looking forward to my doctor telling me that again. All I can do for you is wish you luck, you gotta do the rest. Good luck, Larry.

Nancy S' December 4 reply to Mark's November 30, 2001 - Hi Mark, I had quit smoking for 16 years and had recently started back when I found out that I had CHF. At first I was diagnosed with asthmatic bronchitis and my PCP told me that it looked like the beginning of emphysema. I watched my grandfather die for years with that terrible disease and knew that I didn't want to do that. I never smoked another cigarette. I think you have to have an important enough reason to stop and your life is important to all of us. Good luck and God bless you.

Joseph P's December 4 reply to Mark's November 30, 2001 - Hi Mark, I smoked 2 packs a day and on a bet and the will to breathe, I went on zyban. With this med and the grace of God I quit in 2 weeks. Three months later I had a stroke and the doctor said that quitting helped my recovery. I get SOB with my CHF but it could be a lot worse if I still smoked. Good luck and God bless, Joseph P.

Diane P's December 4 reply to Mark's November 30, 2001 - Hi, I have 3 years smoke-free after 30 years of smoking and trying to quit. My father operated on people with lung cancer so you can imagine the pressure. I quit with the nicatrol inhaler in 5 minutes. I picked up the inhaler and didn't touch another cigarette. It was the easiest thing I have ever done. Now if only I could lose weight that easily I would be a size 6 instead of 16. It worked for me. It is a prescription but costs less than cigarettes nowadays. Good luck!

Maggie S, December 4, 2001 - Hi Everyone, In September my husband had his sixth back operation with a difficult recuperation and complications. He got out of the Rehab unit on 10/3. I had been having problems with my DCM and CHF, ending up in the hospital from 10/17 to 10/28. My diagnosis was acute decompensated CHF. My regular cardiologist referred me to a very good CHF specialist at the University of Minnesota. They first tried the new IV medicine Natrecor, which didn't work for me so I was put on some other pretty potent IV drugs. My liver was huge, the pulses in my neck bulging, and I was feeling pretty sick. My EF was 10%, comfirmed by an echo and a MUGA. I also had my first Vo2max test, a right heart cath, and a TEE. The right side of my heart is involved. My mitral valve is leaking from 2 places. They were talking about repair but after the TEE, it wasn't quite as bad as first thought. My medications were changed almost completely. I had been on Coreg for 2 years and had a fluid problem since starting it. My blood pressure was very low and to bring it up they stopped the Coreg. I was in ICU for 3 days with a Swan-Ganz catheter so they could watch my pulmonary pressure.
     I lost 15 pounds, down to 120. The specialist and his assistant are keeping a close watch on me. If I don't continue to do okay at home they will consider a mitral valve replacement, along with the new procedure involving placing a net around the heart when they start doing the procedure at the University. I have since been restarted on Coreg, and sure enough have started retaining some fluid. I'm now on Demadex, Lanoxin (lower dose), Coreg, Cozaar, and Imdur. I also became completely dehydrated about 2 weeks after leaving the hospital and had to deal with that.
     The doctor felt that because I had so much fluid the medication wasn't being absorbed and so wasn't doing me any good, but once the fluid is gone they will work better. I have had DCM/CHF for 10 years and have been having problems the last 2 years. Things sure can get complicated. My husband may have to go into a nursing home because he can barely walk, and falls easily, 2 to 3 times a week. The doctors are afraid he will really hurt himself. I can't help him up or wheel him in a wheelchair. After being married for 49 years, this is not an easy decision but for both our safety may have to be done. We have 4 very supportive children and grandchildren. I have faith that things will work out but just had to vent a little. Everyone take care and don't overdo for the holidays, Maggie S.

Stephanie, December 4, 2001 - Hi everyone, I hope you all had a good weekend. I have recently been feeling well, but have run into some trouble. I feel like I'm going to lose it at any minute. Mornings are usually the worst. It is similar to a panic attack, only worse. I feel like I'm crawling out of my skin. I usually end up going back to bed because I can't handle anything. Anyway, my question is, "Where do I start with something like this?" Do I go to my PCP because it could be hormonal (I'm at that lovely age of womenhood), do I go to my psychiatrist for depression and panic, or do I go to my cardiologist to check on my heart meds and side effects? Each doctor has their own biase and I hate to start a vicious circle. Has anyone else had anything similar to this? This is the closest I've felt to actually going crazy. Scary! Any suggestions would be greatly appreciated. This merry Christmas season doesn't seen very merry. Thank you, Stephanie.

Jon's December 4 reply to Stephanie's December 4, 2001 - Hi Stephanie, I had a similar reaction to IV compazine: true panic. Benadryl (plain type without any decongestants or anything) took care of it since I was having a drug reaction. Please have either your PCP or cardiologist check for drug interactions, reactions and side effects before moving to the psychiatry stage. One thing at a time. ;-) Jon.

Mary Beth, December 4, 2001 - Hi everyone, I haven't posted since July but I just had to share some good news. Last December when I was diagnosed my EF was 15%. In April it had increased to 45%. I know the meds were doing their job. I was happy then. Better news came in July when I was approved for SSD. Now at my last checkup I was 60%! One thing though, I noticed that not a lot of you talk about cardiac rehab. I would recommend it. I think it helped me a lot, so much that I bought a treadmill for home. If you go to the proper place like a hospital where you are monitored, there are few risks. My nurses were so helpful and encouraging. Most insurances will cover it for at least 6 weeks. I know that I may never be cured and that my EF can go down as fast as it went up, but I am living in the moment.
Jon's note: Most insurances still do not cover cardiac rehab for CHFers unless you have had a heart attack. That is changing for CHFers but very slowly. Cardiac rehab is usually a good idea though, if possible

Joseph P's December 4 reply to Sarkis G's November 30, 2001 - Hi Sarkis, The doctors that I go to told me the best INR is between 2 and 3. They keep mine about 2.5. I seem to be a little fuzzy headed when I first started on this but I feel okay now. I am also on 2.5mg warfarin a day. Once they get your blood to the point they want it, they should adjust the meds. For some reason, telling the doctor once is not enough, so stay after them till you feel comfortable. You will never feel normal again but you are alive. God bless and good luck, Joseph P.

Nikos K's December 4 reply to Maxine's November 24, 2001 - Dear Maxine, I also suffer from DCM and have a Guidant ICD. I was implanted in October of 1999. One month after that I had to return to the hospital because an hematoma occured. This was in part because I take anti-thrombotic medication which thins my blood but it may also have to do with the way the device was implanted. I could feel the cables under my skin. During the re-opening a more experienced doctor put the cables under the device and since then everything is fine.
     For about 18 months I was getting a big number of shocks responding to supraventricular tachycardias. This was annoying and tired me psychologically because I could feel when these tachycardias were coming so at the end I was just waiting for the shock. I had therefore a radiofrequency ablation and an increase of my beta-blocker (metoprolol).
     However after 18 months, one morning that I was feeling fine I got a real VT; that day it happened 5 to 6 times and the ICD simply saved me. That was last June. In the same month I had 2 other incidents, one while I was urinating the other while I was sleeping. The ICD worked perfectly and now I am here (well in Greece) and I can write to you. So overall, the ICD, despite the whatever troubles it caused me, has saved my life in at least 3 incidents and I do hope that many people (and definitely the ones with DCM) get it. It's expensive but this is our life! As far as the Medtronics' device is concerned I cannot really make a comment. Take care and feel free to e-mail me at any instant. Ciao from Greece, Nikos.

Krista L's December 4 reply to Jan S' December 1, 2001 - Hi Jan, I am so sorry to hear of your nephew's prognosis. My 50 year old father-in-law has pancreatic cancer, also with an untreatable tumor that has spread throughout many organs in his abdomen. He is currently in a clinical trial that uses enzyme therapy and a strict diet with Dr. Nicholas Gonzalez in New York. I don't know the complete specifics about qualifications and such, but here is the web site Url Hopefully that can be of some help. Doctors at the Mayo Clinic gave him a maximum of 6 months to live, and he has lasted almost a year now. Best of luck to your nephew and the family, Krista.

Pamela A, December 4, 2001 - Hello, I have posted here before and when I did I got quite a bit of responses that was helpful. Anyway, I am 28 years old with CHF and DCM, either from a virus or postpartum. I was diagnosed in May of this year. I was on amiodarone (Cordarone) for arrhythmia and a couple of months later was taken off it. In the hospital I had a serious arrhythmia which required that. Now being off the drug I have been having quite a lot of palpitations. I guess that's what you call it. I can feel my heart beat or pound. I have an extra heart beat. When it happens I can really feel it. My cardiologist tells me not to worry about it. My heart rate never gets too high or too low. They would rather me have the palpitations then be on the amiodorone because that caused me thyroid problems. Does anyone else have these palpitations, and frequently? Are they dangerous or do we just live with it? Do they cause any more heart damage? Can they go away? I am going up on my Coreg again to see if that helps at all, but otherwise my doc says to not worry. I don't know wether to worry or not.

Jon's December 4 reply to Pamela A's December 4, 2001 - Hi Pamela, I had palpitations and also some severe arrhythmia earlier in my own CHF. It got me hospitalized. Palpitations are a common thing with CHF, as The Manual says. As long as you are comfortable that you have been monitored closely enough for long enough and you believe your heart rhythm is not going to harm you, don't worry about it.
     If you are worried about it, sit your doctor down and ask him all the questions you like, using a pre-written list to be sure you don't miss anything! Be sure he gives you answers you understand. If you are still not really sure, get another opinion from a cardiologist who is not affiliated with the first one. You are the patient and it is your life under discussion. Be certain.
     That may mean educating yourself a lot more than you have about heart rhythm in general and yours in particular but that is also your responsibility. Learn, question, insist, and keep doing so until you have your heart rhythm under control or you are certain it is not dangerous to you. Jon.

Mike, December 4, 2001 - Hi, The AMA is meeting in early December, 2001 to debate and decide if they should launch a study in support of payment to organ donors. What is your opinion on this subject? I believe it is feasible to compensate solid organ donors if Congress passes new legislation controlling the amount paid and how it will be paid, such as a tax credit or cash, and requires legislation now in place for selecting recipients of the organs remain in place and unchanged.

Jon's December 4 reply to Mike's December 4, 2001 - Hi Mike, This is such a bad idea that it doesn't even merit discussion. Jon.

Amelia, December 4, 2001 - Hi everyone, I have heart failure and my septum is very thin with a shunt. I was in the hospital 3 times from April to the end of May, and on heparin, aspirin and Coumadin, 1200mg of amiodarone, Lasix, and 20mg Vasotec. My amiodarone was cut down to 400mg when I got home and I had to be taken off it 3 weeks ago because I was having lots of side effects. I am still having lab work to regulate Coumadin dose. They want my level at 2.5 to 3. My CHF doctor wants to do an EPS to zap out the cells that are causing my a-fib. I want to hold off on that so today he put me on Toprol-XL. I have read a lot on this beta-blocker in this forum and it seems now I am on 2 ACE inhibitors since they both lower blood pressure. Is this the procedure? Is anyone else on both these drugs? He started me on 25mg and I am to call him at the end of week or sooner if necessary, and if all is well he will increase the Toprol-XL. Thanks for any info and best to all.
Jon's note: the drugs a CHFer should take are in the treatment guidelines in the FAQ

Tracey C, December 4, 2001 - Hi everyone, This is a cold and flu season related question. Are cough drops off limits, or are they okay? Also, I noticed that Nyquil only has an antihistimine. Is it okay for us to take? Thanks.

Lisa's December 4 reply to Mark's November 30, 2001 - Hi Mark, You'd think that knowing your life could be over would be incentive enough but I've been told that the transplant team won't see me if I haven't packed it in 3 months prior to seeing them. Even now I am finding it sooo hard. I quit drinking really easily and I was a heavy drinker too but the smoking has kept me from doing anything stupid whilst I've been stuck at home coming to terms with DCM and CHF.
     What I do now is stick to 5 a day and when I have cracked that religiously for 2 weeks I'll make it 2 a day. I keep telling myself that 5 minutes after having a cigarette I don't feel any different or better for it and that helps a bit. Also change your daily routine if possible to avoid situations where you would normally smoke. Remember that the desire to have a cigarette lasts around 20 seconds and once you have passed that your mind will actually forget you wanted one and so will you. Try this, it works! Good luck.

Laura, December 4, 2001 - Hi, I am 42 years old and had mitral valve repair a year and a half ago. Prior to this valve rupturing I had no heart problems that I know of. Since the surgery I have been on Coumadin and Toprol-XL. I had an echo a week or so ago and now am told I have global left ventricular hypokinesis. I do not find much info on this anywhere. I have managed to find the definition but all the sites that deal with heart failure and the like talk about cardiomyopathy and other conditions. Are these things related? Is hypokinesis a cause of heart failure? Is there another name for it that is more common? Thanks for your help. I just found this site and it's great to find information in English!
Jon's note: It means your heart is "stiff" Ask your doctor if you have diastolic dysfunction or a restrictive problem, and then make him explain that. ;-)

Frank S' December 4 reply to Mark's November 30, 2001 - Hi to all, I started smoking at 15 and finally got serious when I was 60 something, because I could not breathe. There is no doubt that the effects of the chemicals caused severe disease in my body, such as chronic bronchitis, coronary artery disease, and peripheral artery disease, 2 heart attacks (which left my favorite muscle 30% necrosed), and for good measure I just had a carotid endarterectomy done but before that they did a CABG and bypassed 5 of my coronary arteries. Some of us are truly gluttons for punishment and it is never too late to start paying attention. ;-) Later, Frank.

Joanne K's December 5 reply to Kim S' December 4, 2001 - Dear Kim, I have cardiomyopathy with a tendency to put on excess fluid but still take Vioxx for my arthritis. I did try another arthritis drug called Mobic, which caused me to have an immediate reaction of severe swelling and chest discomfort so I stopped it immediately. I think you just have to try an arthritis drug and monitor your reaction very carefully. I have yet to conquer the dry skin problem, however. My best to your mother, Joanne K.

Judy, December 5, 2001 - Hi, I haven't written in over a year but I have a question. Does anyone else feel like it hurts when you touch your skin, like on your legs, not everywhere? I am wondering if it's some of the meds I take or is this unusual? I haven't gone through all the old posts to see if this has been addressed before. Thanks for any info anyone has.

Brandy's December 5 reply to Mark's November 30, 2001 - Hi, When I was 4 to 6 years old I would cry and plead with my parents to stop smoking. I begged and begged, telling them I didn't want them to die and I didn't want to be all alone. They never quit and I always felt unimportant because they didn't respond to my constant attempts to save their lives. I started smoking myself when I was 8 years old. I was raised with older siblings who thought it was cool and for some reason I just did it. At first I didn't do it often but as I got older it was 2 packs a day. My parents were very involved in my life, and that is the only thing I ever snuck past them.
     When I was 19 years old (on October 13, 1999) I quit smoking because my then 4 year old daughter came outside where I was smoking and started crying, telling me I would die if I didn't quit smoking and she was sad. I flipped that cigarette into the street and never lit another one. Though I want them every day I will never ever light another one, period. Four months later I got CHF. I wonder where I would be now if I was dealing with this and trying to quit smoking - it has to be sooo hard. There are all different ways to quit, you just have to make up your mind that it is what you want to do, and follow the treatment that you think is necessary, Brandy.

Ruthie A's December 5 reply to Kim's December 4, 2001 - Hi Kim, I have severe arthritis too. Vioxx and Advil (or ibuprofen) are NSAIDs - Non-Steroidal Anti-Inflammatory Drugs. NSAIDs are notorious for causing fluid retention, and Vioxx is one of the worst culprits. My orthopedist put me on a new NSAID called Mobic, which is not so bad in the fluid retention department, at least with me. It's pretty strong so if your mother has a sensitive stomach, she may not be able to tolerate it.
     As to the dry skin, I have trouble with my hands getting so dry that they crack and bleed. I have found that Vaseline's Advanced Healing Lotion applied liberally and frequently helps a lot. Hoping I was helpful, Ruthie A.

Nancy S, December 5, 2001 - Hi everyone, I haven't posted since the first time about a year ago but have been reading about everyone and praying for all of you. On October 25, 2001, I had a Medtronic InSync device implanted. At the time I was diagnosed my EF was 28%, then up to 40%, and just before the implant it was down to 25%. That was after adding Aldactone (spironolactone) and Coreg to what I was already taking.
     My blood pressure drops too low with Coreg so I can only take 12.5mg a day. I also have a problem with the prinivil for the same reason, so I am only on 5mg. Does anyone else have this problem? I'm not sure if I feel any better since the implant. Some days I think so and others I'm not so sure. I have also taken on a more physically demanding position at work since the implant so it could be from that. Anyway, I just wanted to say good luck to everyone and God bless you all.

Joseph P's December 5 reply to Amelia's December 4, 2001 - Hi Amelia, I went through an EPS and it doesn't zap any cells in the heart to correct it. Maybe you misunderstood or this is something new. The EPS test determined if I needed an ICD or not. I needed one to help me live a little longer. With it and the help of God I can live a lot longer. God bless and good luck, Joseph P.

Blake I, December 5, 2001 - Hi, I think that the family of organ donors should be compensated. The reason I think this is because on my hospital bill I was charged $36,000 for what is called heart acquisition. If someone is going to get the money for a "donated" heart I would like it to be the family and not the hospitals.

Jon's December 5 reply to Blake I's December 5, 2001 - Hi Blake, The family would not get the money currently going to the hospital that acquires the heart. The 2 payments would be totally unrelated. Jon.

Michael's December 6 reply to Tracey C's December 4, 2001 - Hi everyone, I have been on cough drops ever since I left the hospital, just Hall's menthol. I use one at night if I have a cough or liquidy throat. They seem to help me breathe better when I exercise. The last time I read a nyquil bottle it was 25% alcohol so unless they have changed the formula I would tend to be a little cautious.
     Someone also mentioned cardiac rehab and I agree that if you can afford it, please go. When I started I could barely walk 100 feet without stopping, with a maximum of 10 minutes. I just graduated and now walk at 2.7 miles per hour for 30 minutes, and use some very light 5 lb strength training weights 6 days a week. I have CHF and my EF has gone up since then. I hope all have a good holiday.

Loretta D, December 6, 2001 - Hi, I read these pages just about every day and have posted a couple of times in the past. I need suggestions. My medical problems are CHF, idiopathic cardiomyopathy, leaky valves, sleep apnea, depression, headaches, and chronic insomnia. The problem I can't seem to get any help for is the insomnia. This has been going on for almost 9 to 12 months and is getting worse. My insomnia is the kind where I can't get to sleep. Once I do get to sleep, I sleep long enough; in fact I often don't want to wake up.
     Sometimes I go 30 hours without any sleep and I certainly feel exhausted from it. My doctor tried me on Ambien but it really didn't help. I know it is important to take the right meds because of my medical conditions and my doctors have not been able to help me. My meds are 3.125mg Coreg BID, 100mg Cozaar, 40mg Lasix, 40 mEq K-Dur, and 60mg Celexa. I quit the Ultram for my headaches and Ambien for sleep. I have been considering asking my doctor to switch my Celexa to elavil since maybe it would help me sleep. Do any of the heart meds cause insomnia? What is safe for headaches? Please does anyone have any suggestions that I could to talk to my doctor about? I really want to sleep normally.

Jon's December 6 reply to Loretta D's December 6, 2001 - Hi Loretta, This has been my personal nightmare for 7 years now. You describe precisely my problem, so here are my thoughts. Number one is that doctors do not take this seriously enough, nor do they place much significance on what we say about our insomnia. Insomnia ruined my quality of life far more than CHF, but I consider it a part of my CHF since I had insomnia for the first time in my life after getting CHF. Nonetheless, I cannot to this day convince my CHF doc there is any relation between the two. That will change on my next visit due to events in my own life. He'd better be ready to listen.
     Second, I don't think CHF meds actually cause my insomnia although they might in some people. I do now know that Coreg at least can make insomnia worse. I dropped my dose as low as 6.25mg BID from 50mg BID with my CHF doc's cooperation. After awhile, I went back up to 12mg BID and stayed there. After about 6 to 8 months I began getting to sleep easier and earlier.
     Then after my last doc visit he wanted me to raise my Coreg to max dose again to see if my heart function would improve even more. When I got to 25mg BID, the insomnia was back within 48 hours. I immediately lowered the dose again but am still struggling to get back to a reasonable bed time, complete with actually getting to sleep. So in my case, although Coreg did not cause my insomnia (I got insomnia after CHF but before starting Coreg), it definitely makes it much worse.
     I can only suggest that you make it crystal clear, complete with yelling, screaming, and crying if need be, how badly insomnia impacts your life because docs in general just don't get it. I take Ultram for foot pain and quit taking it to see if it impacted my sleep. My inability to get to sleep got worse but only because of increased pain. I no longer take digoxin, spironolactone, or a cholesterol-lowering drug so it can't be those drugs.
     Ambien worked for me for awhile but then lost all effectiveness. Elavil did me no good at all, turning me into a zombie and still not helping me sleep. Maybe it would help you, I can't know. However, I can confirm that insomnia affects some CHFers terribly, it can be made worse by our meds, and doctors don't take it seriously enough. I offer my heartfelt sympathy but can't offer much more. Jon.

Ginger, December 6, 2001 - Hi y'all, Well, I had my stress test. It was sort of weird. On incline I get lots of double and sometimes triple PVCs. I have already had one EP study for this. On the stress test when PVCs started this time they let it go and decided to go on up to the next stage to see how it would go. I was slightly lightheaded and that is a first. Anyhow, when they upped to the next level, which is moving along quite a bit at a pretty good incline, it all stopped. My cardio doc was stunned. Coming back down on the speed and incline to slow brought them back. I did better at the higher speeds and more stress on the heart with the incline than I did at lower speeds and no incline. What this means I have no idea. I will get resuts on the complete stress test Monday. I did make a comment though. I told my doc that I guess I should run through my life instead of walking through it, huh?! <lol>
     I doubt they find any blockages since I had absolutely no chest pain. Evidently he didn't see any reason to stop it but it certainly was not your normal run of the mill stress test and things we did not expect to happen did happen. The lightheadedness I had bothers me a bit as it's a first. I will let ya know how it all turns out Monday. I want to also thank you for your prayers for me and for Ryan, who had his transplant and is doing well. In fact he may get to go home the 15th. His first biopsy for rejection is today.
     Thank you all for your prayers and for being here when people like me and Ryan need you. Jon, sorry to hear you had the flu, but glad you're better. Hugs and prayers, Ginger.

Charles S, December 6, 2001 - Hi, I am a recent (November 15) heart transplant recipient. I have had some rejection problems: 1 the first week, 5 the second and 2 this week, so I have been on heavy duty steriods. Recently I have been experiencing cramping in my hands. The doctors say they don't know what is causing it. Tests show my potassium is not low. The only suggestion they have is to soak them in hot water. That does not help. Home health care said that cramping can be caused by either too high or too low potassium. Thanks in advance for any suggestions, Charlie S.

Richard M, December 6, 2001 - Hi, This has been one emotional roller coaster ride since being told that I have CHF on August 6, 2001. I found this site 11/2 and made up my mind that I will fight this with all my might. I am 63 years young and am a retired carpenter. I am on 20mg Prinivil, 81mg aspirin, 5mg Hytrin, 20mg Zocor, 800mg amiodarone (Cordarone), and 6mg Coumadin. I say hi to all you wonderful people and thank you for your great posts and I thank Jon for having this site.
     Jon, I tried the Famous Fruitcake recipe and wow, did I feel good for a day! <g> God bless all.

Lisa, December 6, 2001 - Hi, I was wondering if Jon or anyone has heard about a specific study on cardiac gene therapy. The study was on SERCA2a, a gene that promotes contractility. The study was from 1999. This was in a Nursing magazine that I receive monthly and I also found it on the Internet, under cardiac gene therapy. Does anyone have any thoughts on this? God bless, Lisa.

Gino's December 6 reply to Laura's December 4, 2001 - Ciao Laura, Usually "global left ventricular hypokinesis" is an alternative way to describe left ventricular systolic dysfunction - when at echo we see the heart's walls contract less than we would expect. I think that in your case the damage is not so heavy but sometimes this condition with time may progress to full heart failure. However, it may also reverse with proper therapy. In my opinion you should talk with your cardiologist about your echo results. Accordingly with 2001 ACC-AHA and European Guidelines on diagnosis and therapy of heart failure, you should start therapy with an ACE inhibitor. :-) Ciao, Gino. (E-mail address withheld by Jon)

Jon's December 6 reply to Lisa's December 6, 2001 - Hi Lisa, Medline has a slew of studies on calcium handling mechanisms. Researchers found that gene expression is changed when an LVAD relieves the weakened heart's load over time. That led to a lot of interest in certain genes and their potential - such as SERCA1, 2, and 3.
     As far as I can tell, this subject has only resulted in animal/lab studies about SERCA1a/b and SERCA2a/b, and their effect on heart development and function. I have read very little on these research topics because they are not past the animal/lab research stage. I would guess that a practical application - if it proves a basis for some kind of actual therapy - is way down the road. This type of therapy is going to be really tricky because it means replacing existing proteins in your body with modified proteins that act in very specific, controlled ways. Altering the way calcium acts in the heart is very risky business because calcium is what makes your heart contract and relax. If you get it wrong, well, it isn't good.
     Lots of therapies that looked great in animals and in the lab have bombed in human CHF trials while others work great. We'll just have to wait and see. Jon.

Leslie M, December 7, 2001 - Hi folks, I am a newbie here and am only beginning to read all of the great information. I did read that you are interested in any good CHF docs. If anyone lives in the greater Baltimore area, may I suggest the team from John's Hopkins? My doc is Daniel P Judge, MD, and he is great. Thanks and I look forward to getting to know all you wonderful folks! Leslie M.

Bill D's December 7 reply to Loretta D's December 6, 2001 - Hi Loretta, All the ones I tried - Restoril and Ambien - tend to make me sleep longer. I finally tried Tylenol PM. It seems to get me to sleep in 30 minutes so now I take Tylenol PM to get me to sleep and I take Restoril to keep sleeping longer, Bill D.

Joseph P's December 7 reply to Loretta D's December 6, 2001 - Hi, I have talked to you before. I had trouble sleeping. What caused mine was that I did not burn off the energy I received so I started a little exercise routine to burn the energy I had stored up. I know it may be very hard to get started doing this but it works for me. God bless and good luck, Joseph P.

Susan's December 7 reply to Kim S' December 4, 2001 - Hi, I have had an extremely dry skin problem for years, as did my grandmother before me, especially hands. The best and only thing that works for me is Avon's Silicone Glove. Nothing else seems to help. I hope it will do the same for your mother.

Krista L's December 7 reply to Charles S' December 6, 2001 - Hi Charles, I hope you are feeling much better after your transplant. I had my heart transplant in February of this year. I had a lot of rejection at first too but once the proper mix of medications was found it has been going very well. While on prednisone, I got some really bad cramps in my hands and legs. For me, it was that my level of magnesium was too low. The steroids and immunosuppressants can eat up your magnesium, which is also essential for proper muscle function. You may need to have your levels of magnesium checked. Good luck, Krista.

Jon, December 10, 2001 - Hi everyone, My flu got better and then came back and stomped me all over again. Sorry but posts and e-mails may be kind of slow for awhile yet. Jon.

Stephanie Moody, December 10, 2001 - Hi, My appeal for Social Security Disability has been denied. Jon, on your Social Security page you recommended writing to and calling our federal senators and representatives. I am wondering what to say and include in the letter or call. Thank you for all your help. God bless, Stephanie.

Jon's December 12 reply to Stephanie Moody's December 10, 2001 - Hi Stephanie, I'd strongly recommend a phone call as opposed to a letter, followed by a letter. Just explain your situation and ask for help getting SSA to come to a more fair conclusion. My federal Senators (both Republicans at the time) had a staffer who did nothing but help constituents with SSA concerns. He was a big help. It helps if you are a registered voter with a voter registration number to put on that letter, of course. ;-) Jon.

Joshua, December 10, 2001 - Hi, I also had trouble sleeping, but with exercise and meditation as prescribed in the book "You The Healer" it has become rather easy for me to drop off to sleep. I also feel my Insync ICD which I've had now for a little over a month, has helped. I feel "safer" and have a lot more energy, and have cut my furosemide (Lasix) in half.
     About organs being paid for, I feel this would be an abomination. Interjecting money into a situation involving human body parts would, as money always does, bring out the worst in humankind. I read with interest all the notes on this page, and afterwards I ask God to hold your hearts in His hands, Joshua.

Pat M, December 10, 2001 - Hi folks, Well yesterday I had the first leg of my Cardiolite scan. I am feeling sorry for myself because I had to be taken off the treadmill and have it done with chemically induced stress. I felt like such a failure. My heart rate went up to 135 during the warm-up phase and the doc said to get me off it. I thought everybody could do a treadmill stress test. Five years ago I worked out at the gym 3 times per week on the treadmill and enjoyed it. My second part of the scan is tomorrow. They did it in 2 stages. I just wondered how others do on their treadmill stress test. Thanks and God bless you all.

Ben B's December 10 reply to Jon's December 6, 2001 - Hi, I have my own theories on insomnia and CHF. I am fortunate that I don't suffer from this miserable condition regularly, but on occasion I have. My non-medical opinion is that sleeping is largely a hormonally regulated process. Similarly, many of the body's responses to a weakened heart are also hormonal. These hormones that respond to the weakened heart in many ways act like natural stimulants - their actions are to speed up heart rate, constrict blood vessels, etc. These are similiar effects to those of stimulants. Naturally, stimulants will affect sleep. For many years, during which time I believe my heart was weakening, I experienced feelings of tension and anxiety; not mental, but a physical sort. A lot of times I felt something incredibly strange was wrong with me, but these things passsed and I could never duplicate the experience in my doctor's office or describe it fully. Maybe when a person takes Coreg, the body fights this by trying even harder to speed up the heart rate. This may manifest itself in other areas of hormonal regulation, such as sleep. I'm not offering any solutions, this is just my weird theory.

Richard Malczewski, December 10, 2001 - Hi, Can anyone tell me or give me more information about Omega 3 oil? From what I understand it helps prevent SCD. I thank you.

Brandy's December 10 reply to Blake's December 5, 2001 - Hey Blake, I hope you are feeling well. Remember me from cardiac rehab? I agree with your comment and hope you have been doing great with no rejection episodes! E-mail me sometime and let me know, Brandy!

Jack D, December 10, 2001 - Hi, I think we should adopt Britain's policy on organ donation. If you die in the hospital, your organs are harvested and given to somebody who actually needs them. You obviously don't need them and when you die they become public domain. Great idea! No fuss, no muss, no scrambling around trying to find a donor card because they don't exist. Jack.

Jon's December 10 reply to Jack D's December 10, 2001 - Howdy-doo Jackaknapes, Britain is a socialist country. The USA isn't, at least not yet. In general, if Britain is for it, I'm against it. <g> Jon.

Davida S' December 10 reply to Bill D's December 7, 2001 - Hi, There is an over the counter sleep aid (I don't remember the name) which has the sleep ingredient from Tylenol PM only. Look for the sleep med on the label or ask your pharmacist. Why take extra meds like Tylenol if you don't need the Tylenol?
Jon's note: Tylenol PM's sleep inducing ingredient is just plain old Benadryl

Scott T, December 10, 2001 - Hi to all, I am new to all of this since I was diagnosed with CHF just last week. I have been searching the web for as much information as I can get. I'm 42 and my EF is 30%. The thing that is really getting to me is that I have had nearly all the symptoms for several months. Why did it take so long to diagnose? The most bothersome are that my heart feels like it's going to pound through my chest after any exercise and when lying down, lightheadedness, shortness of breath especially when lying down, and getting easily fatigued. After reading through most of the information tied to this web site, I have realized that I have many more symptoms related to CHF than I thought. The purpose of this post is to thank all of you for your plain English conversations and insights on this subject. I have added this site to my favorites list and I will be back. Keep learning and keep giving, Scott.

Joseph P's December 10 reply to Krista L's December 7, 2001 - Hi, You said something about muscle function which caught my attention. I have CHF and and am taking a lot of meds and I feel as if my muscles have turned to jello. I walk a certain amount but it seems not to help. Thanks, Joseph P.

Bill D's December 11 reply to Davida S' December 10, 2001 - Hi Davida, Being on the cheap side, I bought diphenhydramine-HCL. They were capsules with liquid in them. (Jon, is that plain old Benadryl?) Well it didn't work for me. I think it was mixed with Tylenol, it'll work! I use Equate PM from Walmart. I works like crazy. Bill D.

Jon's December 11 reply to Bill D's December 11, 2001 - Hi Bill, That's plain old Benadryl, all right. <g> I must confess that I had the same result you did, Bill. I tried the plain old Benadryl, hoping to save money, but it didn't work the same for me as Tylenol PM either. I thought it was just me until you spoke up! Jon.

Davida S' December 11 reply to Pat M's December 10, 2001 - Hi Pat, Don't kick yourself about the stress test. Everyone is different. My husband's EF was less than 20% when he took his first stress test. He tried his best, but he got so weak they had to scoot a chair under him. He was very disappointed but now it's no big deal to him. Hang in there and pray for blessings. Be patient.

Gino's' December 11 reply to Richard M's December 10, 2001 - Ciao Richard, About omega 3 oil and cardiac arrhythmias, I report this abstract:

"The essential n-6 and n-3 polyunsaturated fatty acids can prevent ischaemia-induced ventricular fibrillation in rats, dogs and marmosets. In isolated neonatal rat cardiac myocytes, these have been shown to prevent tachyarrhythmias caused by elevated calcium concentrations, toxic levels of ouabain, a beta-adrenergic agent (isoproterenol), lysophosphatidylcholine and acylcarnitine. The ant-iarrhythmic effect is caused by a reduction in electrical excitability caused by partitioning of the free polyunsaturated fatty acids into the phospholipid cell membranes of the cardiac myocytes, which modulates membrane ion channels. Two clinical trials suggest they could prevent sudden cardiac death in humans."
Authors: Leaf A, Kang JX
Source: J Intern Med. 1996 Jul;240(1):5-12

Two large clinical trials (Lyon Diet Heart Study and GISSI-Prevenzione) have tested the effects of omega-3 oil therapy in patients with a recent heart attack in higher dosage (in GISSI prevenzione 1 gram/die) than "usual". The results of these studies have shown a significant reduction of sudden cardiac death. In 2002, a big cooperative Italian study on omega-3 oil therapy in CHF should begin. Ciao, Gino. (E-mail address withheld by Jon)

Cate, December 11, 2001 - Hi, I found this site late 1997 or early 1998. My pooter died in 1999. I had a heart attack in 1990, and angioplasty to open on artery. Several angiograms later I had a stent implanted in my right coronary artery. I don't remember when. Memory has been a real problem due to lack of oxygen and my meds (the usual) for CHF. I have a problem with subcutaneous bleeding on my face, but more noticeably on my arms from the elbows to the back of my hands. The bleeding happens when I itch and scratch without thinking. My PCP and cardiologist have seen this and their solutions were to drop my daily aspirin to 81mg and put me on salsalate (generic cousin to aspirin) for all of the aches and pains I complain about; It hasn't changed anything. I hope that everyone has a good holiday season, Cate.

Trish R, December 11, 2001 - Hi, My doc says it's time to go on the heart transplant list. I would appreciate info on what to expect now, either by posts or e-mail. I've avoided being hospitalized so far and pray that it can stay that way since the transplant unit is 150 miles from home. Thanks in advance for the input.

Jon, December 11, 2001 - Hi everyone, If you have had a heart transplant or an ICD, please move over to the loved ones' forum and read today's posts. Thanks, Jon.

Bonnie, December 11, 2001 - Hi, Please, can someone help me out there? I am looking for a congestive heart failure specialist in the southern California area (Lakewood, Long Beach area) but I'll take any good CHF specialist in the Los Angeles area. Your suggestions would be greatly appreciated.

Ruthie A's December 12 reply to Jon's December 11, 2001 - Hi guys, Remember when your kids were small and they would not settle down to go to sleep, either at naptime or bedtime? Our pediatrician said to give our son Tylenol because it would relax him. Do you suppose the Tylenol PM works better than plain old Benadryl because you become so relaxed with the Tylenol that the Benadryl can do its job? Just a thought, Ruthie A.

Nancy S' December 12 reply to Kim S' December 12, 2001 - Hi Kim, I have both osteoarthritis and rheumatoid arthritis. I take naproxin, hydroxychloroquine, and methotrexate with no noticeable side effects. I also take prednisone. My CHF is class 3. I think it depends on the individual patient but there should be something you can take that will help you. Keep trying!

Nancy S, December 12, 2001 - Hi, Since having my InSync 3 implant I have experienced what feels like very small shocks. Sometimes it is just one or two spaced a bit apart and a couple of times it felt as though the shocks are in time with my heart beats, like tiny rhythmic taps. Has anyone else experienced this? If so, have you talked with your doctor about it? I haven't because I'm afraid he'll think it's all in my head since it's such a small shock. Thanks for being here to inform and help each other. It really helps to know that there are folks out there who care about others enough to do this. God bless each of you, Nancy.

Richard M's December 12 reply to Gino's December 11, 2001 - Hi Gino, Thank you for that information. It seems you are based in Europe. Can you give us any information on the adult stem cell trials that are taking place in Germany and France on heart muscle?

Cathleen's December 13 reply to Nancy S' December 13, 2001 - Hi Nancy, I don't know if this is similar to what you are experiencing, but I have intermittently felt only what I can describe as small electrical shocks going up my left arm and/or leg. I've never mentioned them to my doctor either but always assumed they were associated with TIAs I've had in the past.

Cathleen, December 13, 2001 - Hi, After many sleepless nights I finally tried the Tylenol PM and was out like a light! I still woke up twice to use the bathroom but was able to go right back to sleep. Thanks a million for all who recommended using it.

Rick, December 13, 2001 - Hi, My name is Rick. I had a heart attack way back in 1987 and was not on any type of meds after the first 6 months. I had quadruple bypass grafts in 1998 and was told then that I would need a heart transplant. Since then I have been hospitalized because of CHF. I am now in class one CHF and my EF at last check was 23%, up from 13% because of the meds. I just found this site and thought I would jump in and say "Hello!" to everyone and introduce myself. I am 53 and 100% on SS Disability.

Rhonda, December 13, 2001 - Hi guys, I wanted to put an update out there to see if anyone has a good response or advice to my doctor's reply upon both reviewing my symptoms and seeing me in the office. I gave the symptoms: SOB when I do even slight exercise like walking up a flight of stairs and upon lying down, swollen feet and ankles, excessive fatigue, and my heart beating so hard it feels like it will jump out of my chest. His reply was to try another inhaler and see a pulmonologist, but that "You do not have CHF or COPD. Before I came in the room and saw you, I thought you might have CHF, but when I saw you, there's no way that you could have CHF. People with CHF immediately upon lying down are flailing and gasping for breath and they are swollen up like the Pillsbury Doughboy all of the time - not just mild swelling. You don't have any reason to have CHF. You are young and don't work with asbestos or in a coal mine." He did not hear any "abnormal" sounds when listening to my chest, and he thinks that my asthma is just poorly controlled.
     I am still going to see a cardiologist after the first of the year to get an expert's opinion. I'm not sure what a pulmonologist will do for me. Any thoughts on any of this? Thanks, Rhonda.
Jon's note: See the cardiologist first

Brandy's December 14 reply to Rhonda's December 13, 2001 - Hey Rhonda, Personally, I pray you don't have CHF but in my experience I have only swelled up "like the doughboy" one time, and it was right after I gave birth. I am mildly swollen every night. My husband is the one who does the checking in his own little way with his hand wrapped around my ankle to determine. I am short of breath some days, and not at all during others. Sometimes my heart skips out of my chest but sometimes I could hardly tell there is a heart in there, it beats so lovely. I would definitely see the cardiologist first as Jon said, soon. :-) Brandy.

Ben B's December 14 reply to Rhonda's December 13, 2001 - Hi, Somebody should take a chest x-ray at least. It is how they confirmed my CHF. Remember, not everybody in the world has CHF. It is still fairly rare in young people.

Sharon's December 14 reply to Scott's December 10, 2001 - Hi All, Thank you Jon for this site; Excellent work and only we can understand what it costs you. Scott, I am at 30% too with PPCM and CHF, down 5% from last year but what a 5%! I find that I have to have a to-do list of one thing per day. If I complete it then I do the next day's item. This way I do not feel that I am always behind. Sometimes I do not list dates, just a basic list to be gotten to whenever. I stopped wearing a watch - less time watching and more living. Hang in there bud, and write to me if you will!

Sharon's December 14 reply to Rhonda's December 13, 2001 - Hi Rhonda, Go see the cardiologist! I have cardiomyopathy and asthma, and the asthma can mask the cardiac symptoms. I can lie flat any old time, though I am not comfortable this week. CHF doesn't always have swelling, as I know from my own body these last 10 years. Do not wait dear, there is a lot to help you, especially early in the game like this. Do not accept an appointment in 2 months either; get in as soon as possible because the testing that will be ordered requires scheduling too. Go to the university affiliated hospital in your area because they usually have doctors that teach in their field and I have found my best success with them. If you live in Oklahoma, try Dr Adamson's CHF clinic at University Hospital at 405-271-7878.

Sharon, December 14, 2001 - Hello, I am asking for advice form the cardiomyopathy/CHF patients here in determining the criteria for going to the hospital, maybe this weekend. The nurses just tell me that if I have chest pains, dizziness, palpitations - the ususal - to go in. Duh - I usually have that!
     I just started amiodarone (Cordarone) last week at a low dose and I have felt less arrhythmias than usual in the past few days. The last two have been hard though; I was so weak I could hardly get up. Today I have mild edema. Uusally I rarely get edema, even in the last two months of my pregnancy, which has triggered resurgence of my previously well-managed cardiomyopathy, and in last 15 months of post-partum period. The doctor has called in some Lasix, which I haven't needed for awhile, and my husband will get it for me this afternoon.
     My question is: When you feel this bad, does Lasix help you feel normal again? My next question is: The lying flat intolerance - do you feel like you are suddenly terribly heavy, even with no coughing? I have been up since 4:00 this morning because I was so uncomfortable lying down, even on 2 pillows.
     Third and last: have you heard of others going down very fast, like in 3 months? Thanks. I am so grateful to you all for participating in this site.

Jon's December 14 reply to Sharon's December 14, 2001 - Hi Sharon, I hope others also reply because I am only addressing some of your questions and only from my personal experience - we all know how much personal experiences can vary!
     Lasix can help me feel normal again when I am having a lot of edema. However, it also makes me more tired briefly, which passes once my edema has been gone for a day or two. Be sure to take more slow-release prescription potassium if you take extra Lasix though, or you may feel a lot worse.
     I went from class 2 to class 4 in a few days once some years ago, to the point my CHF doc was quite firm in suggesting heart transplant pronto. I turned that down and after some drastic meds changes and a few months of great difficulty, I got to class 3 and stayed there. So the bad news is we can slide downhill very quickly and the good news is that we can regain lost ground without getting a transplant - not always and not everybody - but often. Jon.

Gino's December 14 reply to Richard M's December 12, 2001 - Ciao Richard, I e-mailed you an abstract of the clinical report published by Dr. Bodo Strauer on stem cell therapy. For news on this kind of therapy, I would advise you to read the reports of symposia of the international cardiological meetings.
     I personally think these are important but optimistic researches and we are probably living in the beginning of a new era of medicine. However, as a clinical (treating patients daily) cardiologist I'm more concerned about "what is wrong" now, and what we should to do now in every hospital, town, and every patient. Prevention of CHF and of cardiovascular disease is a long way from optimal. CHF is a still lethal, underdiagnosed and undertreated illness. Ciao, Gino. (E-mail address withheld by Jon)

Michael's December 14 reply to Pat M's December 10, 2001 - Hi Pat, My doctor did not want me to do a stress test on the treadmill, and did it in 2 stages. I had no after affects from it. I had some nausea occur and they gave me a shot to counteract the stuff and end the stress test. The upside was that my EF has increased to 24%. Merry Christmas to everyone and may God be with you.

Michael's December 14 reply to Bill D's December 7, 2001 - Hi, The over the counter med is Benadryl. My cardiologist told me about it and the pharmicist said it was same as Tylenol PM without the Tylenol.

Davida S' December 14 reply to Sharon's December 14, 2001 - Hi Sharon, Your symptoms might be side affects of amiodarone. Next time you go to the pharmacist ask for some literature from an amiodarone (Cordarone) box. You should read the manufacturer's literature. It is better than what the drugstore prints out and puts in your bag and should give the percentage of people that have had your symptoms. At my husband's worst, he could not lie down. It was like he was smothering.

Donna, December 14, 2001 - Hi all, I find so much comfort coming to this site. I don't post much but I read here every day. This is set to be my home page. A couple of months back I was having problems waking up gasping for breath, a couple of times a night, not every night but enough to scare me. I went to the doctor's and he put me on 20mg Lasix to see if it helped. I didn't have much confidence in that but immediately I felt better with no more waking up gasping for breath. Now I have been on Lasix since September 14, 2001 and 2 nights ago I woke up again grasping for breath! Is it possible that the dose will have to be increased? At the same time he put me on Toprol-XL and that made me dizzy for about one week, then I felt better than I have in 2 years. That feeling has also gone away now and I am back to feeling very fatigued (weak) most of the time. Do doses have to be changed that often? I hope you all have a very happy healthy holiday.

Jon, December 14, 2001 - Hi everyone, the following pages on my site have been updated:

  1. Heartbytes
  2. Pacemakers
  3. Coreg and other beta-blockers
  4. Medspeak


Gino's December 15 reply to Sharon's December 14, 2001 - Ciao Sharon, Fatigue and SOB lying down are typical symptoms of CHF not under control. You must view CHF as a chronic disease that may have episodes of destabilization (often temporary with good treatment). CHF "balance" is tricky, including many factors such as infections, excess salt intake in the diet, anemia, emotional or physical distress, and high blood pressure or angina not well controlled, and so on.
     There is a simple and reliable way to understand if CHF is going out of control: check regularly (each day or every other day) your body weight. When your CHF goes out of control your body weight increases rapidly (3 pounds [1.5 Kg] in one week is an alert) before actually developing fatigue and SOB. Cough may be absent if fluid accumulation in the lungs is very slow.
     Ciao, Gino. (E-mail address withheld by Jon)

Richard's December 15 reply to Gino's December 14, 2001 - Hi Gino, Thank you for taking the time to answer me. I am impressed by your dedication to helping with the fight against CHF. I am not getting my hopes up on stem cell regeneration of heart muscle but it is something to hang ones hat on. It will be something to keep one's eyes on in the future. I also believe it is the hands of God now. Thank you, Richard.

Vee's December 15 reply to Charles' December 6, 2001 - Hi Charles, If you're getting muscle cramps from changes in potassium levels, quinine might help. You can try drinking some tonic water, which contains quinine. I sometimes get cramping in my hands, feet and legs, especially if I skip meals. My doctor says it's from transient fluctuations in potassium levels, even though my lab tests have always been fine.

Vee's December 15 reply to Judy's December 5, 2001 - Hi Judy, When I was on spironolactone it used to make my scalp very sensitive to light touch. The best description is that it made my hair hurt. Also some foods, especially tomatoes, give me mild inflammatory symptoms where my skin hurt, joints ached and I had a low grade fever. I don't know if this is anything like what you're experiencing. It took me a very long time to figure out what was causing my weird symptoms.

Dorothy P's December 15 reply to Donna's December 14, 2001 - Hi Donna, My experience was that both Lasix and Coreg doses were gradually increased. This may be because the body needs to gradually adjust to the meds. I now take 80mg of Lasix in the morning and 25mg of Coreg morning and night. I have felt really good once my fluids were under control. Best wishes, Dorothy.

Dorothy P's December 15 reply to Sharon's December 14, 2001 - Hi Sharon, I can tell you is that I went downhill really fast. I had been diagnosed with asthma, which I had never had. When I had real difficulty breathing and also coughed a lot, when I would lie down. I live in a small town and went to the ER when I experienced this. The doc on call gave me cough syrup! He did not order a chest x-ray. He told me to raise the head of my bed. I did that and was able to breathe much better. One morning, I woke up with ankles the size of an elephant's knee. That is when I headed to the ER in a city nearby. They diagnosed CHF and began an IV of Lasix.
     The gist of my story is to go somewhere else if the answers you are getting do not add up. As Jon tells us over and over, you have to be an advocate for yourself. May God bless you richly. Best wishes, Dorothy P.

Dorothy P's December 15 reply to Sharon's December 14, 2001 - Hi Sharon, I am like many other CHFers - I can only do one thing at a time. I want to put in another plug for the doctors at university teaching hospitals. When I was first diagnosed with CHF I did not have a cardiologist. The young man to whom I was assigned was very bright but every time I went to see him he wanted me to go to Houston immediately and get on the heart transplant list. I kept telling him that would be our very last option. In fact he was lobbying so hard for a transplant that I began to wonder if he was getting a kickback!
     That particular cardiology group had everything down to a fine art. The patient went into the examination room and 5 people came in immediately. They did the weight, blood pressure, EKG. Then the doc sort of breezed into the room and went on his way. I learned to take a list of questions for him to answer. He would perch on the edge of a chair and give me brief answers. I decided it was time to find a new cardiologist.
     When I went to the university teaching hospital, the cardiologist sat and talked to me for over an hour. I learned more from her in that one session than I had learned from my original cardiologist in 4 months. I did not know Lasix was an acronym for lasts 6 hours. I cannot begin to tell you how fortunate we are that Jon has this web site. It truly helps to know that other unfortunate people are dealing with this malady. May God bless you richly, Dorothy.

Nancy S, December 15, 2001 - Hey everybody, I hope you're all felling well today. I just read on Heartbytes that older people who use NSAIDS are 50% more likely to be hospitalized than those who don't, and that those with histories of heart disease are 10 times more likely. Does anyone know if this is also true of middle-aged people?

Jon, December 15, 2001 - Hi everyone, Two things: First the following page on my site has been updated:

  1. Total Artificial Hearts

Also, I sent out a brief mailing tonight. If you think you are signed up on my mailing list but did not get this mailing, please send me your name and e-mail address, clearly stating that you want to be on the list, and I will manually add you. Note: If you have never tried to add yourself to my mailing list please use the form at to add yourself.
     The old version of the list had some verification problems and I have therefore eliminated he verification feature although I hated to do so. You may have gotten hung up in that process; it looks like 50 people did. I apologize, 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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