The paperwork never ends The Archives
August 16-31, 2003 Archive Index

Brenda 8-16     seek opinions
Dan's 8-16 reply to Ann's 8-12     it can get better
Claudia 8-16     cause of CHF can be important!
Kathleen F 8-17     this can be scary
Tom S' 8-17 reply to Claudia's 8-16     a couple of questions
Jon's 8-17 reply to Tom S' 8-17     treatment guidelines & more
Jeremy 8-17     are CHF and myoitis linked?
Craig B 8-17     is anyone else in this boat?
Jon's 8-17 reply to Craig B's 8-17     some suggestions
Sharon L's 8-17 reply to Claudia's 8-16     and some questions
Valerie R's 8-18 reply to Craig B's 8-17     my experience
Joy K's 8-18 reply to Kathleen F's 8-17     it certainly can be scary
Claudia's 8-18 reply to Tom S' 8-17     Coreg and other meds
Claudia's 8-18 reply to Sharon's 8-17     PVCs
Steve 8-18     should I apply for disability
Sheryl C's 8-18 reply to Kathleen F's 8-17     hang in there
Craig B's 8-18 reply to Jon's 8-17     I think I will try that
Greta's 8-18 reply to Kathleen F's 8-17     coping with CHF fears
Greta 8-18     planning a vacation
Kate's 8-18 reply to Steve's 8-18     Coreg experience & question
Kathy 8-18     CPAP driving me crazy!
Natalia's 8-18 reply to Kathleen's 8-17     coping
Lane 8-18     seek no salt added chicken breasts in Texas
Valerie R's 8-19 reply to Steve's 8-18     to keep teaching or not
Kellie S' 8-19 reply to Joy K's 8-18     need help with high blood pressure
Joseph P 8-19     my nipples are killing me
Robert 8-19     really need some help
Joanne R 8-19     water softener & sodium question
Tom S' 8-19 reply to Lane's 8-18     supply of fresh chicken
Michelle A 8-19     why do I swell in stomach, not feet?
Greta's 8-19 reply to Steve's 8-18     to work or not to work
Kate's 8-19 reply to Jon's 8-18     some history
Ben B's 8-19 reply to Kellie S' 8-19     get your kidneys checked
David T 8-19     seek CHF doc in Wisconsin
Phil S' 8-19 reply to Robert's 8-19     suggestions for quickly getting help
Natalia's 8-19 reply to Kellie S' 8-19     patients and doctors
Tony P 8-19     seeking new treatments
Jon's 8-19 reply to Tony P's 8-19     new treatments
John 8-19     nausea and vomiting - seek ideas
Valerie R's 8-21 reply to John's 8-19     possibilities
Sheryl C's 8-21 reply to Lane's 8-18     less sodium chicken brand
Valerie R 8-21     good news update
Kate 8-21     on going back to work
Jacky 8-21     have been accepted into study
Greta's 8-21 reply to John's 8-18     nausea
Valerie R's 8-21 reply to Jon's 8-21     correction
Monica 8-21     wish me well on testing
Jim's 8-21 reply to Greta's 8-21     nausea/vomiting experience & more
Gordon 8-21     seek pacemaker experiences
David W 8-21     need to vent
Greta's 8-22 reply to David W's 8-21     attitude and illness
Katherine H's 8-22 reply to Gordon's 8-21     pacemakers
Jon 8-22     please read this
Crystal S 8-22     needing to vent
Jack D's 8-23 reply to Jon's 8-22     infected e-mails
Elaine's 8-23 reply to Kathy's 8-18     CPAP and BiPAP
Pam L 8-23     seek heart transplant experiences
Valerie R's 8-23 reply to Crystal S' 8-22     doctors' offices and nurses
Nancy S 8-24     update & question about shingles
Jane M 8-24     do I still have CHF? and more
David 8-25     online resource
Vee's 8-25 reply to Kellie's 8-19     high blood pressure experience
Gatha E 8-25     seek motor home or RV experiences
Jon 8-26     forum must come down for awhile
Joy K's 8-26 reply to Nancy S' 8-24     shingles
Caitlin W 8-26     question about echo and cath reports
Jon's 8-26 reply to Caitlin W's 8-26     echo and cath reports
Jim I 8-26     CHF doc makes a huge difference
Daniel 8-26     just diagnosed & have some questions
Diane M 8-27     seek help with itching
Sandra's 8-27 reply to Gatha E's 8-25     RVing
Robert 8-27     desperately seek suggestions
Ruthie A 8-27     update and prayer request
Jon 8-28     forum solution on the way
Jon 8-28     we're back
Jim's 8-31 reply to Diane M's 8-17      itching relief, thank you
Jacky 8-31     update on trial treatment
Bob 8-31     questions about viruses attacking the heart
Jon's 8-31 reply to Bob's 8-31     viruses attacking the heart
Natalia's 8-31 reply to Pam L's 8-23     heart transplant experience
Natalia's 8-31 reply to Daniel's 8-26     fast heart rate

Brenda, August 16, 2003 - Hi, My sister-in-law has high blood pressure. The doctor did thorough blood work and didn't find anything significant. She is going to have a stress test to rule out heart problems. There is also a possibility of renal hypertension. The main thing I wanted to inquire about is that her neck gets red and the doctor said that that could be an indication of high blood pressure. What can one do to reduce their blood pressure?
     She eats fairly well, exercises, and her cholesterol is great. She had the top lobe of the kidney and ureter removed in October of 2002. Does anyone have any comments about what she is experiencing?

Dan's August 16 reply to Ann's August 12, 2003 - Hi, Does it ever get better? I for one can say it sure could get better. From last October to this May, I was in and out of the hospital with CHF six times. I finally went to a different doctor and was told to go to Loyola for an evaluation for a heart transplant. My EF was between 5 and 10%. I went into the hospital in a wheelchair and came out 12 days later feeling very good!
     All my tests were over for the evaluation and this past Tuesday I went for my decision from the review board, and their decision was that my EF went up to 40% and there is no way I need a transplant! I am feeling great and I am back to walking every day, doing things I have not done in a few years; so yes Ann, things can get better. Keep the faith!

Claudia, August 16, 2003 - I was diagnosed with idiopathic cardiomyopathy 4 years ago, with an EF of 15%. My heart was huge, with a clot in the bottom; the walls were thick and barely functioning. I argued about a virus attacking my heart since I had not been sick.
     During my first year on meds - especially 50mg Coreg twice a day - and many others, my EF improved to 30%. Dr. Marc Silver said in his book Success With Heart Failure, to find the cause of your heart failure because it can be important. I read everything I could find, but in the end my husband suggested I have a sleep study done. It showed that when I went into REM sleep (rapid eye movement), my oxygen level dropped to 78%. I was breathing too shallow to get enough oxygen.
     During my first year using a CPAP machine at night, my EF went to 55%, with my heart nearly normal in size. This year my EF is 60% and my heart is now normal in size; even the wall thickness is back to normal. My pulse is 67 and it all looks great! I have gone from the first 2 of 3 cardiologists telling me I would probably need a heart transplant, to this! All because of a lack of oxygen while I slept. I know this is not everyone's answer, but I think it is a new idea to many cardiologists and I could see the amazement on their faces with my results. It might be worth looking into for some, and I hope this helps someone as it has helped me.
     My Coreg is now at 25mg twice a day and for 6 more months they are not going to change any of my medications. I can say that my CPAP machine is the best thing for me and I won't even nap without it. My machine does not have oxygen hooked up to it, but I think some do. I feel so blessed, I found so many answers here at this amazing web site. Wishing everyone good days with comfort!

Kathleen F, August 17, 2003 - Hi, I didn't know a site like this existed. Sometimes it would be good to talk with someone else who understands what I go through. Can you help talk me through the scary stuff?

Tom S' August 17 reply to Claudia's August 16, 2003 - Hi Claudia, I am glad you found recovery via an astute husband and the CPAP. I do have several questions.. You said you were on 50mg Coreg twice a day, which I thought a really high dose. Now your EF is 60% with normal heart size and you are still taking 25mg Coreg twice a day, which is what I take with an EF between 15 and 20%. It makes me wonder why if you are actually a little bit above normal on your EF and your heart has returned to normal size and function, that you would be on any CHF meds at all.

Jon's August 17 reply to Tom S' August 17, 2003 - Hiya Tom! In general, a doctor should keep a CHFer on a beta-blocker and an ACE inhibitor even if their heart function returns to normal. This is in the official treatment guidelines. My own CHF doc once had me on double the target dose for my ACE inhibitor and it resulted in a dramatic improvement in my own heart function after several months. Jon.

Jeremy, August 17, 2003 - Hi, Does anybody know about the link between CHF and myoitis? Are these conditions related? If so, how? Jeremy.

Craig B, August 17, 2003 - Hi, Does anyone else get SOB while trying to get to sleep? Do you feel like you have a cold? I sometimes get this cough and then it is hard to breathe until I sit in a chair; like now at 2:30 AM, or at least get in an upright position. Do any others get this weird feeling - cough, SOB, slight panic attack - because you can't breathe? If I neglect my Lasix (40mg BID) I pay for it later; is that normal? Sometimes I just have to take them later (usually at about 9:00 AM) because I can't afford to be "going" every 15 minutes. Is anyone else in the same boat?

Jon's August 17 reply to Craig B's August 17, 2003 - Hi Craig, I used to have this problem, which is not unusual in CHFers who are not well compensated. Here are some thoughts: First, read That should help some.
     I don't know your sleep habits, but for people who can pull it off (meaning those who can get back to sleep on this schedule), try setting your alarm for one hour before you have to awaken. Keep your Lasix and a little bottle of water beside the bed, and take your Lasix then; go back to sleep for an hour and you may pee out all your Lasix urgings by the time you leave the house. The one drawback is having to reset the alarm clock, so it can pay to use 2 alarm clocks if you do this.
     Finally, two other things are required: That you eat a strict low sodium diet and that you make sure your meds therapy is the absolute best it can be. This will reduce your heart's overload and thus reduce all your symptoms! Jon.

Sharon L's August 17 reply to Claudia's August 16, 2003 - Hi, I was diagnosed with CHF after my family doctor had a hard time getting my bottom blood pressure, and did an EKG, which found PVCs.
     I was wondering if people who had arrhythmias found an improvement after getting a CPAP? I got one in early July of this year and just had a very good stress test with no evidence of arrhythmias during exercise. My cardiologist had a big smile. He advised me to keep losing weight and said that I could do as much exercise as I wanted at cardiac rehab.
     Also, if you have a "bad sodium day," do you feel your arrhythmia more? I ate some crackers with MSG in them and feel a bit SOB today, and am having more PVCs than normal.

Valerie R's August 18 reply to Craig B's August 17, 2003 - Hi Craig, I caught a pretty bad cold and really decompensated this last school year. Many a night I sat up all night at the kitchen table after waking short of breath. Two nights sitting up didn't work, I could not get my breath, and I ended up in an ambulance. One time it was pulmonary edema, another time my doctor's partner said it was mostly panic.
     In any case, I really got into the low sodium! When I'm tempted at all, I remember that last ambulance ride when I couldn't breathe and the paramedics kept pushing me down when I tried to sit up. Also, they found a-fib and I'm taking amiodarone now.
     I totally understand the panic. The third time I came back from the hospital, I didn't sleep at night for almost 4 days, just taking naps during days, and that was stupid. Sometimes, you have to break the panic cycle and I now use Paxil, although I know many who use other things.
     I'm not worried now because I am well-compensated at the moment and sleep well. A good night's sleep makes a big difference! Take your diuretic by itself, not with food, and watch that salt! Val.

Joy K's August 18 reply to Kathleen F's August 17, 2003 - Hello Kathleen, I didn't know this site existed until a few months ago either. Yes, it can be so scary. I felt so alone when I was diagnosed with DCM and CHF in March of 2001, even though I had and still have a great support sytem with family and friends. I am 59 years of age and a nurse.
     I was extremely scared and depressed. I felt like I didn't have any hope. Everything I read and knew about my disease was basically gloomy and bleak. I asked the staff at my cardiologist's office and at my family physician's office for referral to any type of support group and I was given only one name. The gentleman was very kind, however he had never heard of cardiomyopathy and was not familiar with CHF. He was a heart patient with a history of open heart surgery for blocked arteries. It took several months for me to regain confidence and also strength.
     I had experienced pulmonary edema from my reaction to a beta-blocker. Most meds prescribed for me caused severe reactions. My EF at time of diagnosis was 15%. The last time I had an echo some months ago it was 38% and I feel quite well. Like most of us, I tire easily. I walk 2 miles almost every day. I follow my decreased sodium diet and fluid restriction carefully. I never was a salt lover so it's not a hardship for me. I love chocolate but it makes my PVCs dance wildly, so no caffeine and no chocolate although once in awhile I cheat on the chocolate.
     I do become short of breath and sometimes this provokes my anxiety. I take Xanax when this happens and it works well for me. Am I still scared? If I dig deep into my thought center, the answer would be yes. However, I have the Lord at my side together with family, friends, and this great web site. What more could I ask? Many if not all of us reading your post know what it's like to say it's scary. Hang in there, you have us all. Take care. Joy.

Claudia's August 18 reply to Tom S' August 17, 2003 - Hi Tom, 50mg of Coreg is a high dose, but not for someone my size. I read somewhere that if you are over 180 lbs and can tolerate the increase to 50mg it is sometimes recommended. I am sure there are people on 6.25mg of Coreg that have the same EF of 10 to 15% that you have - it all depends on what you can tolerate. From what I understand, the lower your usual blood pressure, the harder it can be to tolerate increasing Coreg but there are probably other reasons as well. I am not a doctor.
     My CHF specialist is not changing my meds for now because I am facing surgery soon and we are leaving well enough alone for now. A part of me thinks the doctor is not sure about such a huge improvement in such a short time, so she is being cautious, which is fine with me. All I know is I am a CPAP fan!

Claudia S' August 18 reply to Sharon's August 17, 2003 - Hi, I know little about PVCs; the only time I had them was when first diagnosed, and it was stress and caffeine related. My PVCs are gone and were gone before I ever went on the CPAP machine. I am sorry not to be more help.

Steve, August 18, 2003 - Hi gang, I've been following the guidelines since I got out of the hospital for the second time this summer: Sodium under 1.5 grams per day and liquid consumption under 1.5 liters per day. It's been 100 degrees lately so my mouth gets very dry. The other day my blood pressure went down to 57 over 37 when I went back on Norvasc as the kidney doctor told me, which my HMO turned into plendil, probably because it's cheaper.
     I have a disability question. I'm a teacher and I'm about to return to the classroom with a heart function at 25%. My regular doctor of internal medicine says Coreg will make it possible to lead a normal life and that I should return to 35 to 40% EF with time. I'm on 5 medications a day now and I wonder if it wise to return to work. I suffer from Hep C and kidney damage as well.
     I've heard it said that an EF under 30% is the general guideline for disability. Is there anyone out there that has been through this dilemma? I detest being lazy but I don't want to kill myself for money.

Sheryl C's August 18 reply to Kathleen F's August 17, 2003 - Hi Kathleen, Just jump right in with your feelings. We all face the "scary stuff" at times and will be happy to help you deal with those feelings. Take your meds, keep on a low-sodium diet and exercise as the doc says you can, and you will feel better and have more control over your CHF. Reading this board helps too. Sheryl C.

Craig B's August 18 reply to Jon's August 17, 2003 - Hi, That is a great idea on the pillows, Jon. Thanks! That is another great idea about the Lasix. I find that if I take it at 9:00am-ish, I am still "going" until about 2:00pm! It would probably help if they were right next to me ready to take nice and early. I am gonna give it a go and again, thanks!

Greta's August 18 reply to Kathleen's August 17, 2003 - Hi Kathleen, There are lots of people on this web site who will be happy to talk you through the scary stuff, me included. First off, if you have never accepted Jesus into your life as Savior, all the talk and encouragement won't help much. It will be kind of like using a water and flour mixture as paste: It will last for awhile but soon it will no longer stick. Only Jesus can offer the kind of sticking power that makes each day worth living; only He can dispell the darkness of fear.
     I was so glad to find this site myself. Itf helps to talk and share with others who know what you are going through. I was diagnosed with CHF in March of this year. So I have had to redefine who Greta is. Yes, there are days - getting fewer and further between - when things just don't feel right. On those days I rest more and do less. Be sure you read all of the info Jon has on this web site. Fear usually results from doubt and not knowing what the future holds. It is really scary when you don't know what's around the bend. Hang in there and the whole CHF web site gang will be here to help you. Blessings, Greta.

Greta, August 18, 2003 - Hi, This is just a note to let everyone know that my husband and I are going to try taking a vacation the end of September. In the past (pre-CHF), we have traveled for 2 weeks at a time on a motorcycle, a Harley Ultra Classic. We are still planning to use the bike for this one too. We are planning on about 7 or 8 days and are going to the Smokey Mountains. I cleared this with my CHF doc first. He said he didn't have a problem with it and for me to just be careful and watch my sodium intake. He gave me a script for extra Lasix for the trip.
     I have been feeling so well and doing so well lately that this trip right now seems possible. By the end of September (27th to be exact) it should be cooler so maybe the heat won't be a factor. My husband said that if things start going sour, we will just turn around and come home. He said he would put me on a plane home if he had to and if it came to that. So I'm hoping the Lord will bless and allow this vacation to happen. I just wanted to share this with y'all! Blessings, Greta.
Jon's note: Enjoy!

Kate's August 18 reply to Steve's August 18, 2003 - Hi Steve, This is a good news/bad news response. I had an EF of around 25% when I was put on Coreg too. My response to Coreg was so quick and so dramatic not even my doctors could believe it. Within 3 weeks I was 20 years younger. I had a husband bed bound with 2 herniated discs and I was his only caregiver for months. My mother was in hospice and I made it a point to spend at least 4 hours a day with her. I had all my chores, all my husband's chores and 4 weeks to empty and clean my mom's apartment. My EF rose to 46% and for one glorious year I felt 21 years old again. At the end of one year, Cinderella lost her magical powers. The decline was not as dramatic as the improvement, but over the course of a year my energy level dropped by about 60% and my EF dropped to 25%. I also have hep C, a little gift from a blood transfusion, but thankfully I have been asymptomatic.
     Yes, you might well be able to return to work. Will the improvements last? No one knows. I am learning that Coreg is different with all of us who use it. Let us hope your improvement is both dramatic and sustained.
     I have a question: Has anyone gone off Coreg and then gone back on it at a later date? My doctors are thinking about taking me off Toprol-XL and trying me on Coreg again. Kate.
Jon's note: Why did you go off Coreg only to go to Toprol-Xl, then think about Coreg again? I must have missed something.

Kathy, August 18, 2003 - Hi, I need suggestions. I have DCM and CHF and have recently been diagnosed with obstructive sleep apnea. I have started CPAP therapy but am having a horrible time tolerating it. Can anyone help? Thanks, Kathy.

Natalia's August 18 reply to Kathleen's August 17, 2003 - Hi, I remember that stress and fear, shakes and panic attacks. I was on ativan for about 6 months, up until my heart transplant. Once, while waiting for a new heart in the hospital, my dad brought me an old laptop he had lying around from his old job. I was delighted not only to first find this web site, but then I did random searches on vacation spots like the mountains, beach, islands, you name it. I am really a visual person and landscape-type pictures make me feel better; so did dreaming about the places. I imagined going there "when everything was over." Of course, I am not 5 months transplanted and back into my life, and have no money to go on vacation. <g> One day I'll do it.
     It was very hard to concentrate on anything for more than a few minutes. I had no energy to focus. I enjoyed cleaning my teeth in bed, though! The whole routine: Brush, floss, and then even using the pick and mirror like the dentist. I also talked to my plants everyday and stared out into space and heard my breaths. Some days are better, especially the ones you spend with a visitor. Try to be with a friend or relative you trust completely to be with in silence, hug them and just watch tv together. A little love goes a long way.
     Those were all my coping mechanisms while in the hospital. It was a long journey, but I made it. Let me tell you, I was having a good day when my heart came and I did not really want the transplant that day - I just wanted to enjoy my cozy little Sunday afternoon in my hospital room watching USA movies. ;-) To each their own, I guess.

Lane, August 18, 2003 - Hi, Has anyone noticed when buying fresh chicken that it's hard to find boneless, skinless chicken breasts that aren't enhanced with broth? That adds anywhere from 180 to over 400mg of sodium per 4 oz serving. Does anyone in the Dallas area know where to get chicken breasts that don't have the enhancing broth? All the major grocery stores have added broth, from our hunting for the pure thing. I haven't checked Sam's yet, but plan to as soon as we can. Thanks for the help!

Valerie R's August 19 reply to Steve's August 18, 2003 - Hi Steve, It mostly depends on what you want to do. I taught 7 years of 8th grade English with IDCM, CHF, and an EF of 15 to 20%. Then I lost air conditioning in my room with high humidity and 38 to 40 kids each period in a windowless building, and we got a new principal. I decompensated 3 times and now my EF is 10% and my Vo2max is 11 ml/kg/min. No one exactlly knows why I decompensated - a cold, heat, I developed sporadic a-fib - but I think it was stress from the adults and humidity.
     I have taken a leave of absence without pay and I have enjoyed being home so far, although after 27 years in this school (35 years total) I miss my friends and I miss the kids. Ironically, I was sent to transplant evaluation (ongoing) but both doctors seemed to think I should have stayed working, especially my cardiologist who has known me 8 years.
     The one thing I will say is that when you are home and get tired, you can read a book or watch tv or take a nap. When you are teaching, as you know, there is no way to rest. It depends on how you feel and what you want to do. You will be too busy to worry about yourself at school; my kids always make me laugh. Now that I'm not going to school, I have absolutely no reason to go shopping for clothes and hardly anything to complain about!

Kellie S' August 19 reply to Joy K's August 18, 2003 - Hi, I am 34 years old and have been diagnosed with CHF for 2 years and just found out that I have DCM. I fully understand what you're saying about the feeling of not being able to breathe. I also have asthma. My blood pressure is sky high and has damaged my eyesight and I have had strokes from the blood pressure. I currently take 14 meds for blood pressure, trembling, and asthma.
     I have found that my meds quit working after awhile but no doctor I go to will listen. They just up my meds and shove me out. I go to a primary care doctor and a cardiologist. One cardiologist I went to told me there was nothing he could do and said that I need a heart transplant. Needless to say, I left in tears. My EF is 30% and my blood pressure runs 240/156-167.
     That is not a misprint. I am at the end of my rope. No doctor wants to help me. They just see me for 15 seconds and tell me to take more clonidine or Coreg or monoxidil or avapro or norvasc or hydralazine. That's just for blood pressure. The others are neurontin for shaking and paxil for panic attacks. He just added Bumex along with Lasix, proventil and ventolin inhalers, and albuterol and xenoprex nebulizers.
     Is there any way I can get a doctor to help me? They all just act like it's cheaper for me to die instead of trying to help me live. Thanks.
Jon's note: Do you take a nitrate? Do you practice a strict very low sodium diet?

Joseph P, August 19, 2003 - Hi, I am a 53 year old male and have been on the usual CHF meds but now I have hurts that I think are unusual for a male. My nipples are hurting like crazy. When I bump them or rub up against them they hurt. I can't remember which med caused this so I need your help to remember so I can call the doc about what is going on so it can be corrected. Thanks, Joseph P.
Jon's note: This is usually caused by spironolactone (Aldactone) or digoxin.

Robert, August 19, 2003 - Hello, I need advice. I an 55 years old, a Vietnam veteran with PTSD, a cancer survivor with severe depression so beta-blockers are out. ACE inhibitors make me volmit and so do vasodilators. I just tolerate Lasix. My blood pressure is 170/114 and I am told there is not much longer to go. I had a stress test in October of last year and my EF and everything was okay but now my EF is 20%. Can anyone help me? Doctors I have seen are very short in appointment time, as in 8 minutes. I am scared and alone.

Joanne R, August 19, 2003 - Hi, I have the sneaking suspicion that this has been discussed before, but my aging mind refuses to dredge up the information - old age is not for sissys! If the water from our taps is processed through a water softener that uses salt in the softening process, does this add sodium to water used for drinking, cooking, bathing, etc.? If so, will filtering systems such as Brita water pitchers remove excess sodium via its carbon granule filters? I'm certain somebody knows the answer to this and I thank you in advance. Be well and God bless, Joanne.
Jon's note: a reverse osmosis unit should remove sodium from pre-softened water but a carbon/charcoal unit does not (I think).

Tom S' August 19 reply to Lane's August 18, 2003 - Hi, Find a Mexican family with a taste for chicken. The Mexican family - which numbered 12 men, 4 women and 5 children under the age of 9 - that lived next door to me couldn't keep their chickens in their yard, and I had a plentiful supply of "fresh" unbrothed chicken running around my yard just ripe for the picking, and I don't even live in Texas.

Michelle A, August 19, 2003 - Hi, A couple of weeks ago I was in Club Med with fluid in my abdomen. I was short of breath because of all the fluid, although there was no fluid in my lungs. I lost 7 lbs in 2 days, and I am now 12 lbs lighter - the best diet I ever tried! I was wondering why fluid sometimes collects in the abdomen instead of the lungs or the feet (mine rarely swell) when the ventricle's pumping is failing. Does anybody know?

Greta's August 19 reply to Steve's August 18, 2003 - Hi Steve, although you have already received a reply on your post, I wanted to put my two cents worth in. The should I/shouldn't I work question has to be answered by each individual's gut feelings about his ability or inability to work. I am able to maintain my housework by doing it in small increments, a little at a time. I tried tackling it the way I used to do and payed the health price for it; I stayed in bed one whole day afterward.
     I question your ability to stand up under the stress of teaching and keeping order in a classroom with an EF of 25%. The physical and mental requirements are heavy for a teacher. My EF has improved from 20 to 25% up to 30 to 35%, and I still don't believe I could maintain an 8 hours a day/5 day work week. I have filed for SSD and are waiting to hear from them.
     If my condition improves enough that I think I can return to work some day, then I could discontinue my SSD benefits. Be sure you evaluate whether you are physically ready to do this or not. I would hate for you to put your health in jeopardy but if you think you can do it, go for it. I applaud your perserverance. Let us know what happens. Blessings, Greta.

Kate's August 19 reply to Jon's August 18, 2003 - Hi, I went off Coreg because it had stopped doing its job. Doctors gradually reduced my dose over 4 weeks and switched me to Lopressor. I really never got any bang for my buck with that. This all happened in 2000/2001. In January of this year the head of the transplant team had me switch to Toprol-XL. After 6 weeks of feeling absolutely lousy, I had a little improvement but nothing to write home about.
     I didn't qualify for a Coreg study but was put on it the minute it hit the market. My current docs don't think I was properly titrated on the Coreg. My doctor increased the dose too slowly and never got me up to target dose. They are left wondering if I tried it again the right way if I might get a better result.
     In January of this year I started Toprol-XL and it knocked me cold for 6 weeks. In February I had an electrophysiology workup and that stopped me cold for another 6 weeks. In addition to reacting badly to the procedure itself, I suffered rather nasty burns that were bothersome for months. In April I had the biventricular business and I have been down for the count since. They are really trying to find something to get me back to my old self. I felt pretty good before implant and did a 45-minute workou. Now dishes are a chore.
     Before I say yes to their messing with me yet again, I thought I'd find out if anyone has ever gone off and back on Coreg. I told them hands off doing anything until October. I need some time to breathe. Kate.

Ben B's August 19 reply to Kellie S' August 19, 2003 - Hi, Have you had your kidneys checked out? Your kidneys have a great deal to do with regulating your blood pressure. They are like a control system. If your renal artery gets blocked, your kidney thinks your blood pressure is low and sends out hormones to crank it up. This was happening to my mother who had blood pressure like yours. They discovered blockage in one kidney and another underdeveloped kidney which they are planning to remove. She had ultrasounds and an angiogram (cath) of the kidney to diagnose it. I'd say it is worth talking to a kidney specialist about this.

David T, August 19, 2003 - Hi, I thought I'd try again. Can anyone recommend a CHF specialist in Wisconsin, especially in the Green Bay area?

Phil S' August 19 reply to Robert's August 19, 2003 - Hello Robert, Have you ever been to the Veterans' Hospital? I receive my care at the Cincinnati VA and I have always been treated with respect. I am also a Vietnam vet with heart failure, PTSD, and a bunch of other things wrong with me.
     Maybe you should go to the emergency room of your local VA hospital and tell them you feel like you may die if something isn't done for you. You may have to wait awhile in the ER, but it will be worth it. You can always have them put you in for your PTSD if you need to.
     Take along your discharge and your DD214 if you have never been there before because you will have to go through the eligibility paperwork. They can get you help if you feel alone or scared but you have to tell them how you feel. Good luck. Let me know how things turn out for you.

Natalia's August 19 reply to Kellie S' August 19, 2003 - Hi Kellie, It sounds like your'e having a tough time out there! Hugs to you! Our reactions to the behaviors of others can be either positive or negative, constructive/accepting or defensive/rejecting.
     Doctors are doctors, scientists, with no round edges; well maybe some, but you'll have to search. Once while at home after a hospital stay for a stroke, I was extremely nauseous, my belly was the size of a watermelon (not kidding), my bones were sticking out, I was pale, and my hair was falling out. My fiance talked me into calling the doctor because I, the pleaser I tend to be, thought that calling would be "bothersome" to him. When the doc told me my state was "normal" and don't worry, blah, blah, blah, I rolled over and hung up and threw up on the floor. I prayed to God to die. I felt alone and neglected like the doctors didn't know what they were doing. I was 27, and my life didn't matter to me.
     I took paxil. I also took Effexor XR. The funny thing is that you can take all you want but if your heart isn't pumping right, your body will not metabolize those meds and they can't do their job. The physical ailments are treacherous with CHF. It's okay to cry. It's not okay to give up.
     If possible, drop your current doctors. Pay no heed to busy and cold sounding medical secretaries who have nothing better to do than smack their gums and swallow twinkies. Get another doctor. Ask someone you know or your insurance company for CHF specialist or even a transplant cardiologist.
     Whatever you do, remember that it's likely to be first denial, then anger, then pain - awful pain and sadness, then bargaining, and then acceptance. You need to grieve for your loss. Those professionals appear to be unhelpful and perhaps they are, but your perception of it all is that they don't care. If that is so, why should you or anyone? Ask yourself, Why should I care about me? How long have I known myself? What do I miss about me? Who are those doctors to me anyway? If I was well, would I be friends with them? What do I have that they don't? Shelter yourself in light, Natalia.

Tony P, August 19, 2003 - Hi everyone, I have not posted for awhile but I read every day. I know that you're busy Jon, but I was wondering if any new meds, trails or procedures are in the works. I don't have much time or computer experience to get it done. I am working 3 days aweek and it's wiping me out. Thank you again Jon and God bless, Tony P.

Jon's August 19 reply to Tony P's August 19, 2003 - Hi Tony, Well, there is a difference between what is new and what is actually available, as you know. I usually stick to reporting what is available. Try these urls for some possibilities of various sorts and remember that some of these may be worthless or outdated or whatever because I just started pulling them out of my hat after reading your post ;-), for removing fluid,, gene therapies (Corgenic, etc.),, to help CHFers on diuretics,, just possibilities,, a sort of CoQ10,, for CHFers with angina,, in trials right now,, oral inotropic drugs getting another try,, a breath test for transplant rejection,, ambrisentan for pulmonary hypertension,, nitric oxide synthase inhibitors for diastolic CHF,
     The New Page is also a good place to watch and the mailing list also helps. I have more but they are headed for one of the two places mentioned anyway. I hope others contribute CHF resources they have found - readers are my most valuable resource - by far! Jon.

John, August 19, 2003 - Hi, I am suffering from advanced CHF. Over the last month I am having trouble keeping any food down. I seem to be neauseated most of the time. I have not seen this problem anywhere I have looked. Help?

Valerie R's August 21 reply to John's August 19, 2003 - Hi John, How long have you had CHF? What meds do you take and how serious is serious? I don't mean to be nosy, but I know many on the board have had problems with vomiting.
     I was queasy for 4 months and vomited a few times but mostly ignored it. Two of my medicines interact with digitek but the doctor lowered my dose to 0.125mg. Finally, after reading The Manual I went and took a dig test and again, following Jon's site, I waited a little over 6 hours from taking digetek. It turns out I am on the high side. The doctor reduced my digetek to 3 times a week. It has made a big difference. The two meds are cordarone and amiodarone.
     That may not be your reason, but often it is medication or even dehydration. Val.
Jon's note: Cordarone and amiodarone are the same drug.

Sheryl C's August 21 reply to Lane's August 18, 2003 - Hi Lane, Up here in Oklahoma we get a chicken brand called Smart Chicken at Homeland stores. It has a lot less salt and less water than other brands. It is slightly more expensive but you are not paying for water. This site has a form to find a store near you that carries it. I hope it works for you. Sheryl C.

Valerie R, August 21, 2003 - Hi, Doctor Roberts called me earlier today. He'd gotten my fax and report from Dr. Bauerlein at Jackson, but no recommendations were made, just test results. We decided to continue upping meds slowly and see what we can do. We don't want to turn the pacer (CRT part) back on, but Dr. Roberts says he will think about it. I was so sick this year that I told him I felt that turning it on again is a last resort before the last resort, which is listing my name on a transplant list! Also, he needs to find out if it can be set in rate mode. My heart is really good when resting and not so good at exercise, although both doctors want me on the treadmill every day.
     So Dr. Roberts suggested I not list and wait to see how I do. I really think being out of my hot room will help! I'm really low on sodium intake too. I just finished making my own beef broth for cooking!
     Late yesterday afternoon, I got the news I had hoped to get after my stress test. It came in the mail from the head honcho and surgeon of our transplant program and I'm going to frame it!: "Ms. Rogers was evaluated by Dr. E. J. Bauerlein and at the present time appears stable despite a diminished performance with her metabolic stress test. He has made recommendations before further testing consideration, which may improve her overall function. You should be receiving communication from his office shortly. Dr. Bauerlein would like to repeat the metabolic stress test in two to three months to further evaluate any deterioration. Should Ms. Rogers require further evaluation, he will contact her coordinator to arrange for further testing."
     I'm very, very happy with this news! Everyone should raise a salt shaker and a drink for me, since I can't have either! If you are a member of Jon's board, you can't do this! <g> Val.

Kate, August 21, 2003 - Hi, After reading the board the past couple of days, I guess I am stunned to learn how many of you work or are going back to work. Not once in the 9 years since I was diagnosed and told to quit my job has any doctor (and there have been plenty) suggested I return to work.
     It was my 25th year with the same company when I was told that this disease was too devastating to allow work. Maybe it is all the new meds since 1994, but certainly the attitude has changed. There have been periods when I might have been able to handle going back, but overall I do not think I could have survived it long-term.
     My hats off to those of you who have handled work and CHF. Kate.

Jacky, August 21, 2003 - Hi, I just spoke with the doctor who is doing the HGF research and although I go for the tests next Friday, the program does not begin uniil August of 2004. I should live so long! They must lose some applicants along the way. Anyway, Friday, then nothing for a year. After that, it's echos every month for a year. Jacky.

Greta's August 21 reply to John's August 18, 2003 - Hi John, Are you new to this site? I don't recall seeing your name. Anyway, about the nausea, talk to your pharmacist since some CHF meds are known to cause it, especially if you have changed meds or had the dose increased. If you find nothing helpful there, then have a talk with your doctor. CHF is bad enough without having to put up with nausea on a daily basis. I had that problem early on, but got it taken care of when I had my gall bladder removed. I still occasionally get it now, but not to the degree I did pre-gall bladder surgery.
     I have noticed in reading some of the posts I am not the only one who had gall bladder problems in addition to CHF. I am not saying this is your problem but my theory is to leave no stone unturned. Also, if none of the above apply to your nausea, there are meds that can help with that. Good luck and blessings, Greta.
Jon's note: While some have real gallbladder trouble after CHF, many times the CHF symptoms are mistaken for gallbladder problems and the gallbladder is unnecessarily removed. That is one reason the two conditions are often mentioned. John, ACE inhibitors can cause edema of the abdomen, which results in nausea - it's related to angioedema.

Valerie R's August 21 reply to Jon's August 21, 2003 - Hi Jon, As soon as I sent that post, I knew you would catch that. These meds are a mouthful. I meant Cordarone and Aldactone! Val.

Monica, August 21, 2003 - Hi, Well, tomorrow I go for my 4th thallium stress test, except this time they are injecting me to get my heart rate up instead of me walking on a treadmill. They are checking the back side of my heart. The front is severely damaged and now the back isn't working properly. What's next?! They cut my Coreg back to 25mg a day instead of 50 and my monopril to 10mg instead of 20. My blood pressure has been really low and she wants to get it up some so instead of adding more pills she is reducing my other ones first. Wish me luck tommorrow. I hate these tests. God bless, Monica.

Jim's August 21 reply to Greta's August 21, 2003 - Hi, Regarding the stomach/nausea/dry heaves and CHF, this is what my father found out last weekend. His CHF is at such a point that his stomach is not getting enough blood flow. Consequently, his stomach is very irritated. A gastrointestinal physician came in and prescribed 2 meds, one for ulcer treatment (basically what he has) and another medicine to help him flush fluids out of his stomach. The night he started on the meds, it was a world of difference.
     Things are not well for him, however. His current physicians have told him there is really nothing more they can do, except the continued Lasix/Bumex treatments and Natrecor. He was told all of this Tuesday, 8/20, before he was released from the hospital. He came home and hopped on the lawnmower. Amazing!
     We're not giving up but there is not a lot left open to us. He's not a transplant candidate. We're meeting with a CHF specialist Monday about other options. My dad's doctors, nurses, and others are all amazed at his rapid decline but considering he had his first bypass surgery at 33 years old and at 43 had another bypass, we're lucky he's still alive.
     I've got some thoughts I'd like to share with everyone and I'll do that soon. Continue to pray for us and all those affected by this disease. Jim.

Gordon, August 21, 2003 - Hi, I've had my pacemaker in since 2000. I have just been told that it was pacing 83% of the time in May and today was told it is pacing my heart all the time. I have never felt it pacing before. Does this mean my heart is worsening since it is pacing all the time? I plan on asking the doctor Monday but I just wanted to know if anyone else can actually feel it pacing?

David W, August 21, 2003 - Hi, I need to vent so maybe I will feel better. I got good news that my insurance company will approve weight loss surgery for me. The bad news is that my EF has gone down to 25%; last year it was 40%. My cardio doc does not want me to have weight loss surgery now. I can't do much anymore and have mostly bad days. Now it is hard to walk a half mile a day, when I used to walk a mile a day. I feel like the meds, especially Coreg, are not helping much anymore. I feel like I am going downhill badly.
     Could my emotions make my heart so much worse? My brother came to visit in June and upset me a lot at the same time Social Security told me I was well enough to go back to work and that my benefits would end in August. I think they will continue my disability payments or so they told me on the phone but I have nothing in writing yet so they could be lying to me. I feel a little better now. I know God will take care of me, although I don't see how. God bless everybody.

Greta's August 22 reply to David W's August 21, 2003 - Hi David, Your emotions can make things worse. How you respond to and your attitude about your health can affect your body. Studies have been done on this subject which show that those with a positive attitude do better.
     The added factor of faith in God helps. Charles Swindoll said, "The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company, a church, a home. We cannot change our past, we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude. I am convinced that life is 10 percent what happens to me and 90 percent how I react to it. And so it is with you."
     Where does that postive attitude come from? Trusting in the Lord even when we don't know what the outcome will be or understand why. Read the story of Joseph beginning in Genesis 37. He probably didn't know how the Lord was going to take care of him either, but He did. Read carefully and you will see where the Bible says many times that "the Lord was with Joseph." Hang in there, God is holding you in His hands. Blessings, Greta.

Katherine H's August 22 reply to Gordon's August 21, 2003 - Hi Gordon, It is my understanding that pacing 100% of the time means your pacemaker is helping your heart 100% of the time. My biventricular pacer helps my ventricles 100% of the time and my right atrium 50% of the time, but I'm not pacemaker dependent. If you are pacemaker dependent, I think that means your heart will not function without the pacemaker.

Jon, August 22, 2003 - Hi everyone, Hey, if you don't run an up-to-the-minute anti-virus program, please go get one. I am now receiving so many e-mails that people don't even know their computer is sending that it is choking my mail server.
     If you do not run a regularly updated anti-virus program please at least take me out of your address book and remove all instances of my e-mail address from your computer! This could at some point shut down this message board, so please take my message seriously.
     Also, if you have your anti-virus set to send a "notification" message to anyone who sends you an infected e-mail, TURN THIS FEATURE OFF! Most viruses now send with someone else's address in the first place, and I am tired of people who think I am sending them infected messages. I am not, and I am really fed up with this "feature." Please turn it off. Thank you. Jon.

Crystal S, August 22, 2003 - Hi, I am just wondering how you know if there was damage to your heart? I don't think anyone ever mentioned anything like that to me. I called my doctor and the secretary took my message and said, "Well, I think heart failure is something you get and then it goes away." Where do they get these people? I don't care what she thinks. I know I have heart failure, I know it's not curable, and I want to know about damage! Sorry to vent but really, shouldn't they be a little educated before they answer the phone?

Jack D's August 23 reply to Jon's August 22, 2003 - Right on Jon, Some infected computer in the State of Tennessee Department of Education is sending out viruses with my e-mail as the return address. I am getting all of the "returned mail/mailer daemon" stuff and it is really piling up. I got a note from one of our participants here that he has gotten the virus e-mail with my address at least 30 times.
     I keep forwarding the returned mail notes to the listed tech at the Tennesse Department of Education with requests that she get off her fat butt and clean the computers, but she hasn't even had the courtesy to respond. That's okay. I have her phone number and the IP number of the computer that is the culprit so I am going to start a vocal campaign about it.
Jon's note: I'm getting over 125 infected messages every time I download my e-mail and my systems are not infected.

Elaine's August 23 reply to Kathy's August 18, 2003 - Hi Kathy, I am also on CPAP and at my first instance of CHF, they had to change the machine to a bipap for me to breath without getting worn out. Does your mask fit right? Do you know your pressure? How are you doing now? Don't give up! It makes a world of difference in your life. E-mail me anytime.

Pam L, August 23, 2003 - Hi, My 19 year old son suffered ventricular tachycardia May 31st. He received a Medtronic ICD June 12th. He feels great but "failed" a Vo2max treadmill test at 12.6 ml/kg/minute. The experts say he must be tested for heart transplant candidacy. He is a Wilms Tumor cancer survivor; clear 8 years now. Three years of chemotherapy caused cardiomyopathy and mild CHF symptoms every few years. We are bif on alternative health options, which we are pursuing.
     I have some questions. Have any of you had transplants? If yes, would you do it again? Is life complicated taking the meds? Being subjected to other illnesses/diseases due to immunosupression? My son doesn't think he wants to make the decision for transplant. How many hospital stays? Lots of doctors visits? The cost sounds astronomical from what the hospital finance office advised me. It sounds like a long tough road. They say a 50% survival record after 10 years.

Valerie R's August 23 reply to Crystal S' August 22, 2003 - Hi, Several years ago my cardiologist moved into an office with 8 other cardiologists and too many medical assistants to count. Not only does one wait on hold from 5 to 45 minutes, but I've had very bad information given me over the years by these women.
     Most recently, with the information from the heart transplant team I wished to talk about, I actually called, got a name (always get a name!) and faxed a very short note to the doctor about what I needed to know and discuss. It worked. He called and everything was resolved.
     I don't think doctors have nurses anymore. There is simply too much of a shortage and too much of an expense. My group has one "physician's assistant" who really knows his stuff and was very helpful to me last time I was in the hospital.
     I guess I'm too much of an old-fashioned person, but it bothers me when one calls an office of 9 doctors and before I can even punch a million numbers, the message is to call 911 if you are sick.

Nancy S, August 24, 2003 - Hi all, I just wanted to update my previous post about my DH. He was admitted Tuesday and they did a quadruple bypass Wednesday. They wanted to do 5 but the artery was completely gone. He's doing very well. He was up walking the next morning and the nurses said they'd never had anyone do that before. He's very determined to get back to work. I'm worried about his trying to do it too soon.
     I have the shingles and my PCP has been trying to get me in to see the cardiologist but they haven't called me to make the appointment since Wednesday afternoon. I get very short of breath almost as soon as I arise. We did an EKG, which he said only shows that my pacer is working right and a chest x-ray showing no fluid in the lungs.
     Has anyone ever had shingles and did it affect your breathing? I'm very interested in any information. They go from the center of my abdomen on the left side to the center of my back. I'm not sure if where they are matters. I'm having severe abdominal pain like just before you dry heave, the pain you get. Thanks for any information.

Jane M, August 24, 2003 - Hi, I don't post often but I read posts every day. I am a 54 year old retired fifth grade teacher; retired since last November when I couldn't handle teaching anymore. I am receiving state retirement disability and I've applied for SSD. I have been turned down and I'm awaiting a hearing date.
     My question is: Can one not have CHF after an initial diagnosis? My doctors have not said that I have CHF anymore, although that is how my DCM was diagnosed after chemo treatments for breast cancer. I take Lasix every day and if I watch my sodium intake and take all my meds, I do quite well. I do have episodes of weight gain and I increase Lasix as needed. I take Vasotec and Lanoxin as well as many other meds for other various conditions. If I don't have CHF, why am I still taking Lasix and other heart meds? Thanks for any input. This SSD business is very stressful. I can't imagine that is too good for my heart.
Jon's note: You have "compensated" CHF - see The Manual

David, August 25, 2003 - Hi from Ireland, These are wonderful forums. I have been ill for over 18 months and am waiting for a heart transplant because of idiopathic cardiomyopathy. While I have been ill, I have been able to start a little web site called 2hearts, offering spiritual support to anyone who faces the trauma of heart illness. I am not seeking merely to promote a web site but sincerely offering support and encouragement. God has been so good to me. 2hearts is located at

Vee's August 25 reply to Kellie's August 19, 2003 - Hi Kellie. I thought my blood pressure was terrible, in the past topping out at 238/120 despite multiple meds, but you have me beat! First, since this is not your garden-variety primary hypertension. Have they ruled out all other conditions that could be causing your blood pressure to skyrocket?
     Second, an expert needs to evaluate your meds and determine if the meds themselves, or medication interactions, could be contributing to your problems. I strongly suggest you find a hypertension specialist and a doctor who will listen to you and talk to you. I would have gone that route if I hadn't finally gotten my blood pressure under control most of the time. I am in an HMO and I know they would have resisted paying for me to go elsewhere to see a specialist, but if need be I would have paid for an outside consult myself and fought for reimbursement.I would start looking for one in a reputable university-based or other cardiac specialty clinic.
     At least 3 of your meds, clonidine, minoxidil, and Coreg, have severe rebound hypertension as a rarely mentioned adverse effect. I've always resisted when they tried to give me clonidine, for that reason. When I started Coreg, my blood pressure went out of control with severe highs greater than I had seen before. I found that by taking it 4 times a day, I avoided the rebound as the meds started wearing off.
     Other drugs, especially digoxin, were also affecting my blood pressure and increasing my vision problems. Hydralazine had the greatest effect on my vision but without the digoxin I could tolerate it much better. Mevacor also raised my blood pressure. If you have asthma, Coreg may aggravate it and a better choice might be Toprol-XL.
     The problem with many of these drugs is that you can't just stop suddenly taking them once you start them because the rebound effects are so alarming. In any case, you deserve a competent specialist who'll work with you!

Gatha E, August 25, 2003 - Hi, I have been feeling a lot better lately and haven't had a need to post but I do have a question. Are any of you out there into traveling a lot with a motor home, or even maybe living full-time in one? How do you deal with your CHF? Anything that you can share would be appreciated. There is a lot of the country that I have not seen and would love to see since I am feeling better. Thanks in advance, Gatha E.

Jon, August 26, 2003 - Hi everyone, The heart forums will be shut down for a few days, most likely. This is due to the worms/viruses I mentioned earlier. If everyone takes me out of their address book, I can have the forums up again much sooner.
     I'll be back when this worm stops causing me hundreds of messages with attachments every time I download my e-mail. It takes hours now to download my e-mail each day. I will put up the posts I have already received by sometime tomorrow.
     Again, please configure your anti-virus program not to send a warning to systems it thinks sent you a virus. Jon.

Joy K's August 26 reply to Nancy S' August 24, 2003 - Hello Nancy, I am replying to your post regarding shingles. They follow a course of peripheral sensory nerves and are often on one side of the body. Lesions themselves never cross what is known as the midline of the body, but nerves on both sides of the body can be involved. Fatigue, itching, fever and pain are common syptoms. Usually after the initial pain syptoms, the rash develops. Pain is the number one complaint, together with itching. Pain may vary from what is considered a light burning sensation to a deep visceral type pain. It may be consistent or intermittent. It usually persists for about 4 weeks. In approximately 50% of people over 6 years of age, the pain may last for months or even a year or so.
     In my nursing career I have not had any patient with shingles complain of shortness of breath related to the shingles. I was 17 years of age when I had them on my neck and shoulder. The rash persisted for weeks and I lost a small piece of my ear lobe. Today normally no treatment is prescribed. Zovirax (Acyclovir) may be prescribed, which accelerates healing and reduces pain. It is given by mouth in pill form and usually in high doses (400mg to 800mg every 4 hours) as often as 5 times per day for about 5 days. In severe cases it may be given intravenously; lower doses are effective this way. The one drawback to Acyclovir is that you are encouraged to increase your fluid intake to prevent a precipitate forming in the kidneys so for people with DCM/CHF like myself, I would not use the drug unless I had a severe case.
     Pain medication is available and should be used. The period you are infectious is just prior to the rash appearing and when the blister type rash is weeping and not crusted over. It is caused by the same virus that causes chicken pox. If someone in your family hasn't had chickenpox, they could become infected. I hope this helps in some way. Joy.

Caitlin W, August 26, 2003 - Hi, As in my last post, I am still chewing on the meaning and interpretation of echo worksheets and interpretations. I read Jon's translation of the paper on evaluating echo measurements again today. I also found the original paper on the web. I am impressed. What a service this man provides. What a gift it is to translate all that MedSpeak so well. What dedication and energy has gone into this web site.
     Nevertheless the article provoked a couple of questions of my understanding. My first question is about the 2 little tables. I did not digest what the difference between them was. Was it different studies? Are they talking about the same limits or values in both? I know this is my lack of understanding more than Jon's translation, but I'd like to hear some clarification from any of you.
     I have some numbers from 2 different caths. Some of the measurements have initials similar to the charts in the paper, and there are others not in those charts. Is there any more progress in good sources for understanding cath measurements in general? Why shouldn't it be something we understand and track like our INR and lipids? Why the mystery? Best wishes to all who participate in this forum. Caitlin W.

Jon's August 26 reply to Caitlin W's August 26, 2003 - Hi, The first table shows reference values from their study of medical literature, and the second shows those reported as being used by actual labs. See the last sentence just before each table. The study authors are reinforcing their contention that standards vary on echo interpretation, even to the point that no one agrees on standard healthy heart sizes.
     It is lack of standardization that prevents easier report interpretation. For instance, different medical centers and even different doctors use different acronyms and abbreviations for the same thing. I asked my own CHF doc about a reader's echo report once and about 2 abbreviations he had no idea - and he interprets echo results every day. Jon.

Jim I, August 26, 2003 - Hi, As Kathy Lee would say, "All I can say is wow!" Last week, my dad was told there was nothing more our local cardiologists could do. He was told he would live 3 months to 5 years - very discouraging.
     Today (a week later) we went to see a CHF doctor in Indianapolis that I found through this web site. Thank you, Jon. We were met with an incredible amount of encouragement. The nurse talked with us (Mom, Dad and I) at great length about the heart troubles my dad has had. We then met the doctor, who did some more questioning. She said she wanted to run some tests and see some things for herself, and then we'd "pow-wow" in the afternoon.
     At 3:00pm, we met and she told us that she believes she can help my dad a great deal. She is modifying some medicines, and putting him on an ACE inhibitor - which he has not been on - don't ask me why. We had been told locally that he was not a heart transplant candidate. The physician today, who specializes in CHF, is also part of a heart transplant team. She said that we had been given a great deal of misinformation, and that my dad is a prime candidate.
     We're going to try the medicines first and see how that goes. He is now under her care and will be seeing her regularly. We'll be doing the analysis of being a candidate, and then if the time comes, go from there. I know this is a long post, but my points are:

  1. Don't ever give up.
  2. Get a second opinion. If you don't like it, keep going.
  3. A positive outlook is half the battle. If you're alive, you're better than a lot of other people.
  4. Repeat step one - don't ever give up.

I can't tell you how encouraged we all are. Of course, we are far from out of the woods but the light is getting a bit brighter! Continued success to everyone! Jim.

Daniel, August 26, 2003 - Hi, My name is Dan and I am 47 years old. Eleven days ago I was rushed to the hospital. I had experienced initially slurred speach and had fallen down 3 times before getting back in bed. My wife discovered my deteriorated condition and repeatedly asked me what was wrong. I would answer "Wah, wah, woh, woh" or something close to that. Apparently I was having mini-strokes.
     I then decided - at 2:30 in the morning - to get a drink of water to clear my throat so I could speak clearly. This resulted in my demonstrating a face plant in the middle of our bedroom floor since my feet would not listen to me. My wife thought this was funny as I was not awake yet. I am not a avid doctor-goer and sm a retired motorcycle racer. In fact, I did not even have a personal physician. I was presumably a picture of health. As I fell down again in the bathroom my wife immediately became concerned and this resulted in a disagreement about calling 911. I then fell again out of the bathroom and landed on my back. There was more discussion about calling 911. I told her, "No honey, I will be okay, just let me get back in bed."
     She was still thinking we should call an ambulance and I kept saying no. I then got up and did 5 jumping jacks and this left me a little wobbly so I immediately got back in bed so she would not see me wobbling. She asked me again what was wrong and when I replied "Wah, wah, woh, woh" again, she called 911. In retrospect, she probably saved my life.
     I was diagnosed with an enlarged heart. I told the doctor we already knew I had a big heart but there was no laughter - what a spud. They did a 12-lead EKG and an echocardiogram, which resulted in a long-winded diagnosis of idiopathic cardiomyopathy, pulmonary edema, congestive heart failure, an ejection fraction of 10%, low blood pressure, and impaired kidney function. Well, after 6 meds and more blood tests than I have had in all my life, I was quietly urged to proceed to a heart transplant list. I am in Goshen, Indiana, and the hospital is local so they are referring me to Lutheran Hospital in Fort Wayne.
     I have now found that the evaluation process is discriminating and I have 2 strikes against me since I am 30 pounds overweight and I will have to pass a series of BUN tests while my kidneys are in question. I have not had a heart cath yet but that is coming soon. I got the impression that they sent me home to see how it goes. I am wearing a heart rate monitor and I can tell you that if I do almost anything, the monitor jumps up to 104 and the alarm goes off.
     My questions are, what are my options, and do I really degrade my heart when I reach a elevated heart rate? I am following my doctor's instructions to a tee and I realize this is real. Dan.

Diane M, August 27, 2003 - Hello to you all, what a wonderful board you have here! My father has CHF and has unbearable itching spells that can last for days. He is allergic to some of the meds the doctors were giving him, so they were stopped. He takes Benadryl and that helps slightly, but not much. He has tried all kinds of creams and lotions, and they don't help either. The doctor doesn't know what else to do for him. Has anyone else had this problem and did you find anything that helped?

Sandra's August 27 reply to Gatha E's August 25, 2003 - Hi Gatha, Full-time RVing has been a dream of ours for a few years. My husband is retiring in 3 years and we planned to sell everything and buy a motorhome. When I became ill, I thought our dream was shattered. However, I also read a web site called, which is about full-time RVing. I sent an e-mail telling them I was afraid I would never live my dream. They e-mailed me back and said they have seen people on the road with heart transplants, kidney and liver transplants, cancer, and all sorts of handicaps and disabilities. They said not to give up. RVers live longer. The man at movingon had a heart attack several years ago and his doctor advised him to come off the road. He's glad he didn't and hasn't had any problems. Good luck and God bless!

Robert, August 27, 2003 - Hi, I am in need of help please. This is my second post. My CHF is getting worse due to my blood pressure. I throw up on all ACE inhibitors that I have tried and almost all other blood pressure meds I have tried. I have been on MAOL inhibitors for depression and PTSD over 25 years. The newer antidepressants don't help me and my depression can get actively suicidal if I am not on meds. Doctors think that is why my stomach rejects everything else. I have a feeling the time I spent in the Marines in Vietnam killed me over 35 years ago. I am scared and docs have given up; I have seen many, in and out of the VA.
     Any suggestions would be hugely appreciated and any that work might save my life. I am sorry to sound like a crybaby but I am desperate and do not know where to get help. Thank you.
Jon's note: Robert, if you send anyone else an offensive e-mail and I find out about it, you will be banned from this board.

Ruthie A, August 27, 2003 - Hello everyone, I haven't posted in awhile so I thought I would stop by and give an update. I found the most wonderful CHF specialist who is understanding even while being very strict. She realizes that we are only human and cannot attain the ideal, but she also demands that we try.
     She is re-evaluating all my meds, beginning with my diuretics. At our next appointment she will give me the changes. I have dropped 75mg. per dose of my Edecrin, and while I have retained some fluid, I seem to be holding my own. That is very good news! It does require even stricter sodium monitoring, but that is not a bad thing.
     Fortunately, my heart is the least of my worries at the moment. I am undergoing major dental work, including oral surgery on Thursday to remove 4 teeth, repair a hole in my sinus bone, and prepare my gums for a denture. As if that was not enough, I tore the miniscus - a major cartiledge in my knee - while evacuating our apartment during a fire alarm. Surgery will be in about 2 weeks, as soon as my mouth heals enough to tolerate the breathing tube during general anesthesia. My knee surgeon is concerned about how my heart will do, but I believe I will be fine. After all, when I had my back surgery nearly 4 years ago, my heart fared better than anything else. Go figure.
     So if you think of it, please say a prayer for me. Two surgeries in less than a month is a strain on a healthy person. It will be a difficult time at best, but I am confident my heart will hold up. I am also confident that God is not surprised by it all and He will get me through. Stay cool everyone and remember that it won't be long and we will be freezing instead of roasting! Ruthie A.

Jon, August 28, 2003 - Hi everyone, I signed up for broadband (DSL) today. It will be ready September 5th. I certainly hope to have both heart forums back up and running before then, but that is the latest we'll be back. This solution will prevent most denial of service worms from shutting us down as this one did. Thank you all for your patience. Jon.

Jon, August 30, 2003 - We're back. :-) Jon.

Jim's August 31 reply to Diane M's August 17, 2003 - Hi, I understand the unbearable itching because I had the same problem for a year, and a change of meds didn't help. I finally started to improve when my wife suggested that I take real food with my meds instead of milk as I had been doing. Also, a dermatologist prescribed a salve that gives temporary relief. It is TAC 0.1% In Aveeno Anti-Itch Lot.
     I must thank all you CHFers for your prayers. After I posted for help, there was a notable change for the better.

Jacky, August 31, 2003 - Hi, I went for HGF testing on Friday. I will know the results in a couple of weeks. They gave me an IV with a growth hormone, releasing hormone and arginine, then they drew blood every half an hour for 3 hours, and it was all painless. As I read the release form I realise that this new treatment is only expected to improve quality of life - it doesn't mention mortality. This was a bit disappointing. I wonder if it will do more than Coreg. I will confirm this when the doctor phones me with the results. Jacky.

Patricia, August 31, 2003 - Hi, I don't post often but I read daily. I want to thank all of you for giving me the courage to not give up. I have CHF, cardiomyopathy, and leaking valves. I am now seeing my 6th cardiologist. I am finally doing better. Jon, you have helped me gain the knowledge to make informed decisions concerning my healthcare. I feel like I have been given back my life. Thank you, thank you, thank you! Patricia.
Jon's note: You're welcome - just remember that you are the one improving your care - no one else. Keep it up!

Bob, August 31, 2003 - Hi, Does anyone know why people get a virus that affects their heart? The docs say that's how I got idiopathic cardiomyopathy. I got regular colds like everyone else but I have never had any illness that I can pin point as giving me cardiomyopathy. I know many people say they got it from a virus. Can anyone get a virus that goes to the heart? Is there any way to prevent it?

Jon's August 31 reply to Bob's August 31, 2003 - Hi Bob, Idiopathic means "cause unknown" so if your cardiomyopathy is idiopathic, it was not caused by a virus. Certain viruses do invade and damage the heart, but it is also possible for your immune system to damage your heart muscle while it is trying to kill a virus invader. Both cause viral cardiomyopathy.
     The only way to be sure a virus caused heart damage is to find evidence of it in a biopsy of your heart muscle. Read about the heart biopsy procedure at
     The most common culprit is an enterovirus called Coxsackie B3. Some adenoviruses are also known to hammer the heart muscle in some people. Many such viruses are caught by millions of people who suffer nothing but "flu" symptoms from them; in a few people, the same virus will cause life-threatening illness like cardiomyopathy and no one knows exactly why.
     It is suspected that some people are genetically prone to this. We do know that the heart muscle has receptors that by their nature are "attractive" to these specific viruses. Such a virus does not have to duplicate itself (replicate) in the heart to do damage; the virus interacts with heart-produced proteins in some way that damages heart muscle cells.
     Usually, most idiopathic and viral cardiomyopathies are lumped together under the title "inflammatory cardiomyopathies." A virus can persist in the heart after damage is done but often is killed by your body's defenses, leaving heart damage behind. If the virus persists, your prognosis is worse and that's a decent reason to have a heart biopsy if no one really knows what caused your heart weakness.
     Can you catch a virus that will damage your heart more than once, making it worse? As far as I know, yes, this can happen. However, it must be pretty rare. How do you prevent such a thing? I'd say use common sense - wash your hands often and well, stay away from people who are currently sick with a cold or flu, and stay as fit as possible (lose excess weight, exercise regularly, eat smart, take your meds, etc.) to keep your immune system strong. Jon.

Cindy's August 31 reply to Caitlin W's August 26, 2003 - Hi Caitlin, I am a little confused. First you are speaking about echos, then you say you have numbers from 2 different caths. Are you talking about echos or caths? They are two totally different procedures and I don't think you can compare caths to echos.
     Perhaps I am misunderstanding what you are trying to say. Anyway, I have had both cath and echo and the things compared seemed different. Cath seemed to have more pressure-related stuff.

Natalia's August 31 reply to Pam L's August 23, 2003 - Hi Pam, I had a heart transplant in March of 2003 and I'm 28 years old. My problem was a virus that enlarged my heart and nearly killed me. I had a stroke before finding out anything was wrong. Anyway, I'll do my best to answer your questions but I also have some questions.
     Have any of you had transplants? If yes, would you do it again? I would, in a heart beat. <g> Is life complicated taking the meds? Being subjected to other illnesses due to immunosupression?
     They say a lot of things but frankly, it has not been a big deal for me so far. You have to stay very conscious of your hygiene and surroundings. Wash your hands after touching anything. That's a lot of handwashing, but it works. They will give your son a booklet with all the information he needs to maintain his health and the transplant team will provide counseling too if necessary.
     The meds are many, I will be honest. As long as he eats well and regularly and drinks fluids, they may metabolize with few problems and with only minor side effects. Some transplant recipients live more than 10 years after transplant. You have been told the stats based on patients who on average are 50 years old or more and who are white males. What about young people? There are not that many of us, so take the stats with a grain of salt. Take the meds as directed, eat right, and exercise daily. Think of it like your son getting a baby - a new baby in his chest that he needs to care for.
     You say your son doesn't want to make the decision for transplant. My choices were transplant or death. What are his choices?
     How many hospital stays? Lots of doctors visits? I stayed in the hospital the whole time because I had to, for 5 months. I was status 1B on the waiting list, with 1A being the highest. Insurance companies will cover transplants but you must talk to a transplant coordinator at the health insurance company and ask which transplant centers it has a contractual agreement with. That binds them to pay. In my case, I moved to North Carolina from Virginia because my insurance wouldn't cover the transplant in a good hospital in Virginia.
     I received my care at Duke University Hospital. By the time I got to Duke, I had paid 1500 dollars US out of pocket already, the annual limit for a single member in my health insurance plan, so my stay and operation did not cost me any more money. My insurance company also had a program to pay for travel and lodging of family members before and after transplant. The limit on this was 10,000 dollars US, so my family and I practically moved to North Carolina for a few months. My dad is retired, so this worked out.
     My insurance company told me they preferred centers such as the Cleveland Clinic, Duke, and Pittsburg, in that order. They are large programs with loads of experience. The Washington Hospital Center in DC is small but good and I go there now for biopsies. Your son will have clinic visits for weekly biopsies the first month post transplant, then bimonthly for 3 months, then monthly for 3 months, then biyearly, then yearly. Depending on the center, biopsies can continue indefinitely or end at 5 years if he is stable and not rejecting. On this site, there is also a link for information on heart transplant. Look it up in the index.
     Also, go to for more information. The cost sounds astronomical from what the hospital finance office advised me. It sounds like a long, tough road. They say a 50% survival record after 10 years is usual. They will say a lot of things that freak you out because that's their job. I went through so many headaches - and I was the patient, not a family member. Don't get too frustrated. It's just that they need to make sure their investment in your son is worthwhile; sad, but true. Good luck, Natalia.

Natalia's August 31 reply to Daniel's August 26, 2003 - Hi Daniel, According to my doctor, my personal experience, and a physical therapist, that fast heart rate can hurt your weakened heart. I had a resting heart rate in the 120s too. My heart was beating fast to make up for the reduced amount of blood it was putting out per beat. Imagine if you make it go faster just to walk faster - it could beat out of control and because the muscles are weak (drowning in backed-up blood) they will give. Just like pulling a muscle in your leg and then pushing it and pushing it and pushing it, there could come a time when your heart muscle will just give up - cardiac arrest. If the doctor says don't do it, don't do it. Walk, but slowly. Move, but slowly. I know it seems like death is a dream but it can happen. I know because I was close. Natalia.

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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