The paperwork never ends The Archives
Loved Ones - April, 2000 Archive Index

Karen P 4-1     my husband's getting worse, venting
Rita 4-1     importance of right doctor, right tests & more
Becky 4-1     update on Elton & to Nancy
Judy 4-2     seek advice
Sue 4-3     seek advice, lots of questions
Jon's 4-3 reply to Sue's 4-3     for what it's worth
Bill D's 4-3 reply to Karen's 4-1     CHF & failing kidneys
Bill D's 4-3 reply to Judy's 4-2     possibilities
Katie D 4-4     the process is wearing me down & more
Peggy B's 4-4 reply to Bill D's 4-3     update, doctors, helpful CHF info & more
Sue 4-5     update, doctors are so frustrating & more
Jon's 4-5 reply to Sue's 4-5     doctors, getting over the hump
Sue T's 4-5 reply to Jon's 4-5     getting a specialist & more
Jon's 4-5 reply to Sue T's 4-5     Lasix doses
Kat 4-5     questions about numbness
Karen D's 4-6 reply to Katie D's 4-4     coping, saving sick time & more
Dotty M 4-7     the right doc & a new procedure question
Jon's 4-7 reply to Dotty M's 4-7     new procedure
Erv 4-8     facing a lot of uncertainty right now
Jon's 4-8 reply to Erv's 4-8     Family Leave Act & more
Karen D's 4-9 reply to Erv's 4-8     transplant cardiologists & health insurance
Jon's 4-9 reply to Karen D's 4-9     health insurance/COBRA question
Erv's 4-9 reply to Jon's 4-8     thx for the quick reply
Marion M 4-9     update, portal veins questions & more
Bette 4-9     caregiver tips & more
Sue T 4-9     Andre's sleep problems - questions
Jon's 4-9 reply to Sue T's 4-9     sleep problems
Jon's 4-9 reply to Marion M's 4-9     portal veins & more
Brad 4-10     seek others having child with weak heart
Teresa H 4-10     seek caregiving help & more
Bobbi S 4-10     cath, transplant questions, confusion & more
Sue T's 4-10 reply to Jon's 4-9     we'll call the doctor today, thx
Bill D's 4-11 reply to Teresa H's 4-10     hospice as an option
Jon's 4-11 reply to Teresa H's 4-10     other options
Leah S 4-11     I am confused
Janine 4-12     questions about my mom's situation
Jon's 4-12 reply to Bobbi S' 4-10     has he seen a transplant team yet?
Jon's 4-12 reply to Leah S' 4-11     can you answer a few questions?
Kathryn 4-12     lisinopril &other meds questions
Peggy 4-12     good news update & CHF specialists are great!
Jeanette's 4-13 reply to Kathryn's 4-12     lisinopril & Coreg effects
Karen D's 4-13 reply to Jon's 4-9     COBRA act & health insurance
Jon's 4-13 reply to Karen D's 4-13     COBRA act info can be frustrating
Bobbi S' 4-13 reply to Jon's 4-12     update, SSD questions & more
Jon's 4-13 reply to Bobbi S' 4-13     SSD & sick leave, info request & more
Dave G 4-15     questions about Rhythmol
Sue T 4-15     update & more
Kat 4-15     ill husband driving me nuts, how can I help him?
Ben B's 4-5 reply to Kat's 4-15     adjustment period & more
Gus R's 4-16 reply to David G's 4-15     Rythmol information
Kat 4-17     specialist questions
Jon's 4-17 reply to Kat's 4-17     specialists
Shirley M's 4-18 reply to Theresa M's 4-10     update on my mom
Jon 4-18     hospice, tough decisions
Sherri 4-18     this site's info needs some work
Jon's 4-18 reply to Sherri's 4-18     naw, just gotta get people to read <g>
Tandy K 4-19     Good news about Brandt!
Jon's 4-19 reply to Tandy K's 4-19     that's great!
Barbara P J's 4-19 reply to Sherri's 4-18     DCM versus CHF
Jon's 4-19 reply to Barbara P J's 4-19     DCM versus CHF
Linda Horn 4-19     what can I do for my mom?
Jon's 4-19 reply to Linda Horn's 4-19     a specialist is needed
Susie's 4-19 reply to Shirley M's 4-18     ventilators, hospice, doctors, patient wishes & more
Sherri 4-19     clearing up any misunderstanding
Jon's 4-19 reply to Sherri's 4-19     can you answer some questions to help me?
Pam 4-19     holistic herbs are the answer
Jon's 4-19 reply to Pam's 4-19     that's a basic mistake - easy to make
Bobbi S' 4-20 reply to Jon's 4-13     update, hope & to Tandy K
Cheryl T 4-20     questions about husband's activity level, meds & more
Aubrey E 4-20     need info on coping with CHF
Laura 4-20     my husband is dying of CHF
Karen D's 4-20 reply to Sherri's 4-19     would be happy to e-mail with you
Jon's 4-20 reply to Bobbi S' 4-20     thanks & more
Jon's 4-20 reply to Cheryl T's 4-20     tests, activity level, meds & more
Jon's 4-20 reply to Aubrey E's 4-20     try The Manual & get back to us
Charlie 4-20     can severe memory loss qualify for SSD?
Sherri 4-20     for what it's worth
Jon's 4-20 reply to Sherri's 4-20     stick around, what do you lose?
Karen D's 4-20 reply to Laura's 4-20     we really do care & more
Cheryl T's 4-20 reply to Jon's 4-20     Monopril & indigestion questions
Karen P 4-21     dialysis, kidney failure questions & more
Connie B 4-21     like the site
Al H's 4-21 reply to Sherri's 4-20     coping, more info, tourists & more
Jon's 4-21 reply to Al H's 4-21     tourists in Al's back yard
Al H's 4-22 reply to Cheryl T's 4-20     monopril side effects
Erv 4-22     test results frustration
Jon's 4-22 reply to Erv's 4-22     some quick questions
Ginger's 4-22 reply to Sherri's 4-20     DCM, CHF, hope & more
Karen D's 4-22 reply to Al H's 4-21     Loooeeseeanna
Deana M 4-22     seek name of new CHF wonder drug
Ken's 4-23 reply to Cheryl T's 4-20     coping with newly diagnosed CHF
Pat S 4-25     prayer request & more
Emily 4-25     seek web tv info & who to believe?
Kat 4-25     what about these symptoms?
Jeanette's 4-25 reply to Sherri's 4-19     compensated CHF
Ginger 4-25     thank you all
Erv's 4-25 reply to Jon's 4-22     echos and results
Jon's 4-25 reply to Erv's 4-25     echos and results
Julie 4-25     glad to find you
Jamie S 4-26     what can I do?
Chris 4-26     seek test info & more
Marsha L 4-27     "flash" CHF questions
Bill D's 4-27 reply to Jamie S' 4-26     the patient can be right - need doc change maybe?
Al H's 4-27 reply to Jamie S' 4-26     some suggestions
Chris 4-27     more info on that test - questions
Jon's 4-27 reply to Chris' 4-27     might be an echo
Gus R's 4-27 reply to Jamie S' 4-26     tough decisions and not ours to make
Chris' 4-27 reply to Jon's 4-27     sensor will go through her nose
Bill D's 4-29 reply to Marsha's 4-27     flash CHF, longevity & more
Jamie S' 4-29 reply to Gus R's 4-26     thanks, it's a difficult situation
Kathryn's 4-29 reply to Chris' 4-27     procedures
Ruthie A's 4-30 reply to Bill D's 4-29     flash edema, update on mom & more
Jeanette's 4-30 reply to Chris' 4-27     endoscopy, maybe?
Chris 4-30 reply to Kathryn's 4-29     going with her tomorrow
Annie G's 4-30 reply to Chris' 4-27     TEE, maybe?

Karen, April 1, 2000 - Hi, My husband is 59 and has CHF and an enlarged heart. His EF as last measured in June of 1999 was 20%. He went to a nephrologist yesterday for the first time and it appears as though his kidneys are failing, as well as his heart. The doctor said his heart is not strong enough to withstand dialysis. My husband is very fatigued and weak, with tremendous edema in his abdomen. He is having trouble keeping the diuretic balance; enough to keep the water off while not stressing the kidneys more. I knew very little about dialysis but always thought it was for "sick" people and it's hard to grasp that my husband is too sick for dialysis. Just venting, Karen.

Rita, April 1, 2000 - Hi Jon, How many times have you said get a cath? Countless, I'm sure. This is regarding my son Donnie. We posted prior to mid-March so I had to go to The Archives to find your response regarding pacemakers for CHF. The pacemaker is no longer the issue, though. We went for a cath by our new cardiologist after 2 others had only done echoes. During the cath they found that only one artery was open and it was only functioning at 5%. They did an immediate quadruple bypass. It appears now that the blocked arteries were what was creating his CHF. Had a cath been done in the beginning 2½ years ago, a lot of what has happened might have been avoided.
     He's doing well considering he just had open heart surgery at the age of 34. We're just thankful for the doctor who did the right test. I am sure someone somewhere sent us to Dr. Anderson or there's no doubt we would have lost Donnie in the near future. I repeat again: Folks, Jon is right. If your doctor won't run the proper tests, find one who will. We didn't know and it almost cost my son his life. It will be awhile before we find out how much damage was done to his heart by the low blood supply. He's had at least one heart attack severe enough for irreversible damage and probably several small ones. His prior doctor kept saying his chest pains were to be anticipated with CHF and he was "99% sure he would not have a heart attack."
     Fortunately we have Medicare and were not dealing with an HMO. I have a friend whose sister is a class 4 and she can't go where she wants because of her insurance. My recommendation is, if you're in an HMO, choose the doctor you want and pay the difference yourself. Our love and hope to all.

Becky, April 1, 2000 - Hi everyone, My husband Elton is much, much better. I think he's relatively pain free now, though he hobbles still. His wrist is still sensitive if something bumps it slightly but relief has come. Hallelujah! Thank you for prayers for our family. I know God bestowed favor on Elton this week.
     Regarding Nancy C's post: Nancy, Jon is right. You've got to ask questions even if the doctors act like they don't have time or give you looks like they can't believe you don't know more than you do; Been there, done that. The decisions we all have to make are as serious as they come - even when we understand everything. There's no way to have peace in a decision we feel pushed into. What is commonplace to these doctors is not commonplace to us. Also, I don't know how long you've been coming to this site but Jon is one you can trust. Thanks so much, Heartline folks! Happy month of Easter! It's a month most appropriate to celebrating life! Becky.

Judy, April 2, 2000 - Hi, Someone please give me advice. My Dad has CHF. He had a pig valve inserted 7 years ago. He now has the weeping legs and also much confusion. I believe he belongs in a hospital but we do not have much confidence in the hospitals in this area. He is 87 years old. Is there anything else we can do for him?

Sue, April 3, 2000 - Hi, First of all I would like to say thank you to Jon for replying to my rather confusing message. I come on this site often to read the messages, and so many people have much worse situations than my husband, and seem to cope so well. Andre, my husband has CHF is at present at 20%. This happened after open heart surgery, around 3 weeks. It has been a month since he was diagnosed with CHF and we have not been able to see a specialist because his doctor doesn't seem to see the need, and I am so worried.
     Andre is so different now! He does not eat enough to keep a bird alive, although he used to love his food. He has no motivation to do anything. Today he has diarrhea. He tells me he has no pain, but is huffing and puffing a lot. He mentions his stomach but says he cannot explain the feelings. His weight has not changed so I don't believe he is gaining fluids. I believe in my heart that we should see a specialist, but I feel we have our backs up against a brick wall.
     My husband seems to be going with the flow. That is what happened before the CHF: he was sick for 7 days and I finally put my foot down, and we saw a different doctor who admitted him right away. That's when they ran an echo which confirmed CHF. Yep, I guess I am rambling on again. My questions are:

  1. Is feeling so depressed normal?
  2. Is having no motivation to do anything normal?
  3. Is having stomach problems after eating small amounts normal?
  4. Should I put my foot down and drag him to a specialist?

     I have 2 children and a mother in law with dementia. Right down it's really hard to keep on going. Any advice always helps me deal a little better. God bless you all every one. Oops, one more question: my husband feels like he is failing due to him not working and bringing in any income. I tell him it is early days yet and that maybe later down the road he could get a part-time job. Do many people with CHF hold jobs? Thank you again Jon, for replying so quickly. This site is great.

Jon's April 3 reply to Sue's April 3, 2000 - Hi Sue, I confess that your doctor's attitude steams me, but good. Print out the studies at this page and ask him to tell you in plain English - in detail - why he thinks he is so much better than every other doctor in America, that he does not fit the picture described in these articles, all of which were published in peer reviewed and prestigious American Medical journals like the American Heart Journal and Chest!
     About your questions:

  1. Yes and no. It's certainly normal to be depressed for awhile after getting a diagnosis with a name like "heart failure!" You'd be nuts not to be depressed for awhile. <g> However, slowly but surely he should work his way out of that depression by educating himself until he realizes that with proper lifestyle and a little luck he has a long time to live yet. He should learn to take steps on his own to help himself feel better. Being able to do things to help one's self is an excellent way to fight depression like this. That includes adopting a low sodium diet and actively tracking his sodium and water intake, tracking his morning weight to watch for edema, starting and monitoring his own exercise program, taking his meds on time in the right dose, and learning all he can about his illness, as well as posting to The Beat Goes On!
  2. Yes and no. We CHFers get really tired, and it's hard to motivate when you can barely lift a foot to take a step. However, motivation is partly attitude, and that we can do something about. Again, he's got to get involved in his care or he's going to stagnate. Try to get him online so he can see that we're normal folks here, just having an illness in common. We're not some weird type of "online" people. We're just people with CHF who happen to be online. :-) Maybe if he talked to some of us online, he'd get the idea that he can help himself feel better and function better
  3. Yes. We all get the "fullness" feeling at times - it's in The Manual, which I hope you have printed out and given to him! Toss in all the meds we take and our stomachs can give us all sorts of weirdness and discomfort. Tell him to talk to us about it!
  4. Yes. Or have him e-mail me and I'll tell him
  5. I wouldn't tell him he may be able to work down the road, even though he may or may not. Instead, get him interested in that regular exercise program, diet program, fluid intake restriction monitoring, weighing every day, reading about CHF - doing things instead of lying around waiting for things to happen to him.

Bill D's April 3 reply to Karen's April 1, 2000 - Hi Karen, Five years ago my ejection fraction was 17 and my nephrologist said my kidneys were failing too. If your heart doesn't pump enough blood, your kidneys aren't happy about it. In my case, the medicines I was taking finally started helping my heart. It started pumping more blood and my kidneys got better! I hope it's like that with your husband. Bill D.

Bill D's April 3 reply to Judy's April 2, 2000 - Hi Judy, Do you live in Vero Beach? We're thinking of moving to St. Augustine or Ponte Vedra Beach. Is that the area you don't have much faith in the hospitals? Maybe you should ask your Dad if he wants aggressive care or palliative care. Maybe his doctor will be willing to certify that your Dad has only 6 months left. If he does, you should have the hospice people talk to him. I would want my daughter to do that. We're not afraid of dying. We're just afraid of suffering. Bill D.

Katie D, April 4, 2000 - Hi Jon and friends, My husband has had cardiomyopathy for over 7 years now. We have been through so many stages, from beginning medications, diet, low sodium, restricted fluid, IV medications and now an LVAD is being discussed. He has been actively listed for a donor heart for over 2 years. Of course when his numbers are up he is off the list for a week or so, then reactivated. Our transplant center has been very successful and they are very selective. If you don't follow their guidelines 100% (which all make sense) then you are out of the program. However, I have come to think that the doctors have a very good idea of the patients treatment timeline and they just are not specific of time you are in a certain stage because they don't want to scare you. I wish my husband's doctors would say you have "X" amount of time in this stage. Then you could plan your life a little. I save my sick and vacation time at work so I can be with him when a heart comes. Then I think what if a heart doesn't come, we could of been spending some good time together. I have a deep gut feeling that things are only getting a lot worse, not just a new stage. I am just feeling so sad tonight.

Peggy B's April 4 reply to Bill D's April 3, 2000 - Hi Bill, my Dad and sister live in St. Augustine (I grew up there) and they have good cardiologists there but no CHF specialist. My Dad has CHF and we were told by his doctors in St. Augustine at Christmas that there was not anything else they could do for him there. They suggested that he go the the Heart Failure Clinic at Shands. Jon is right: what a difference a CHF specialist makes! The first visit they changed his meds slightly but it was enough to help him. Then he came here for 2 days of testing to see if he's eligible for a heart transplant. He comes back next Monday to see the results of those tests. I work here at UF at Shands and have printed out The Manual and information for Dad, which has been very helpful. Actually most of the information that has helped has come from Jon's site.

Sue, April 5, 2000 - Hello everybody, I would like to say thank you to all who replied to my last post. My husdand is still feeling under the weather. I called his doctor last night since Andre was having problems sleeping. he has had no sleep in 4 nights, is not eating and has breathing troubles. His doctor is so rude he has no answers because Andre cannot explain what is going on with his stomach. I ended up taking him to the ER, where they ran tests. Most were normal but he had a small amount of fluid on his left lung (more Lasix) and sent us home. If I had not taken him to the ER, would the small amount of fluid turned into large amounts? I asked the doctor, if Andre was gaining a lot of fluid on his lungs, would it show on the scales? First she said yes and then she said sometimes it doesn't. My husband's doctor still seems to think there is no need to see a specialist. His words were, "A specialist will not do any thing different then me." I am so tired of no clear answers. If it was not for this site I am sure I would have gone out of my mind.
     I do believe my husband is going through tough times dealing with the cards that have been dealt to him. He is 40 and as of December, 1999, he has never been sick, nothing has held him down, he lived for basketball coaching and playing. I really do not think our caregivers are doing a good job in letting us know what CHF is and what to expect and not to expect. We are supposed to be going in to see our doctor this morning. I am not ready for it right now. I feel like I will go off so bad, and I know that is not the answer. Thank you again, everyone. Does anyone ever feel as if they should become Forest Gump, and start running and running and not stop? <g> Sue T. tcsbbq@prodigy

Jon's April 5 reply to Sue's April 5, 2000 - Hi Sue, First the blunt truth: get a new doctor, now. Then get a CHF specialist on your own. Stop relying on a doctor who obviously doesn't give a thought for your lives. I can't say it any more clearly than that.
     All us CHFers go through a tough adjustment period when we are diagnosed. After all, we have every aspect of our lives shaken up: work, family, recreation, hopes for the future, scheduling, everything. It's normal to struggle for awhile. If your husband would talk to us online, it would only help. As I have said before, one good way to jolt us out of our apathy and frustration is to get us involved in our own care. Your doctor is preventing that. Lose him and get on track with a doctor who cares. Jon.

Sue T's April 5 reply to Jon's April 5, 2000 - Hello again Jon, and thank you for your quick response. We did not go back to the doctor today. Instead we called and said we want to go to a CHF specialist and finally he agreed. He did up Andre's Lasix but it is still not half as much as most are taking. I do try and get Andre online. Sometimes he will read the replies we receive, but for now he lets me do the fact findings. I do think he will do better than he is right now. Like you say, it is going to take time. I'll keep you all in my prayers and post changes that may happen. Thanks again, Sue T.

Jon's April 5 reply to Sue T's April 5, 2000 - Hi Sue, I think you'll find a CHF specialist quite an improvement. About Lasix, dose is determined entirely by need. The less a CHFer can take and not retain fluid, the better! So be careful comparing doses. It's a very individual thing. Jon.

Kat, April 5, 2000 - Hi, I'm grateful to all of you for being here. My husband is 57 and has an ejection fraction of 20%. He has many of the symptoms listed, but has anyone experienced numbness all over the body? His face, sometimes his lips even feel numb, chest and extremities go numb. He has side effects from some meds, but none seem to include numbness. He has some edema, but not too badly yet. Would this be a cause? Also, his kidneys are not functioning in full capacity. He is taking diruetics.

Karen D's April 6 reply to Katie D's April 4, 2000 - Hi Katie, I hope that you are feeling better today. I can't imagine what the past 7 years have been like for you or for your husband. We have only been living with CHF for 1½ years and that's been rough. You said you are saving your sick and vacation days for when your husband gets his new heart. If you are totally worn out before that happens and end up sick yourself, you won't have done either of you a favor. I think it's important to find a balance between saving it all up for some date in the unknown future and using some time to enjoy being with each other now. None of us knows how long we have on this earth and any of us could be killed in an accident tomorrow. If your co-workers are like mine, they will be glad to donate some of their sick and vacation time to you when needed. As far as the doctors giving you a time frame for each stage that your husband is in, if they are not giving you that information, it's probably because they don't really know. Please feel free to e-mail me if you want to talk some more. You and your husband will be in our prayers. Karen D.

Dotty M, April 7, 2000 - Hi, I read the posts here almost every day and I can contribute to finding a good doctor. We also had a doctor we were not satisfied with and my husband did not feel good. We changed and it was the best thing we ever did. We ended up in a different city over an hour away from us on a recommendation from our family doctor. I feel we are very lucky to find a doctor who really cares about our situation. I also have a question if anyone can answer it.
     My husband is 56 and has very severe coronary artery disease. In 4 years time he has had 4 angiograms, 5 bypasses, 8 angioplasties and 3 stents. He can never have anymore bypasses and the only artery they can do an angioplasty on is the right coronary artery, which is the one he has had the 8 angioplasties on and the 3 stents. In other words, that is the only artery that is keeping him alive. We just got home from the hospital 2 weeks ago from 4 angioplasties and the doctor said there is a new procedure out, but not till July, where they put radiation in the artery to stop the cell growth which causes the built up. Has anyone heard of this procedure? He didn't give us a name and said he would talk about it in June when he will go into it more. He wanted to make sure my husband healed and felt good first.
     My husband is also in CHF and in mild kidney failure. His EF is 20-25%. He still works every day. In fact, he got the okay to return to work this Monday. He feels great now and I know it's because we have a good doctor who knows his medications and works with my husband to adjust them to keep him feeling good. If we could just stop him from clogging up so fast! He's hoping this new procedure that comes out in July will help him live longer. He has been a diabetic for 16 years and is on 3 different drugs for that, plus he has low thyroid. The key is the right formula of medications and we are happy so far that this doctor took the time to work with my husband to get him feeling as good as he does for so long.

Jo's April 7 reply to Dotty M's April 7, 2000 - Hi Dotty, I've been following this procedure in its various forms for quite awhile. I haven't put any info on my pages about it because my pages are really devoted only to CHF and I couldn't keep up with revascularization info too. It's a field that changes every day. The radioactive substances are called "beads" and so far, the procedure is looking fairly successful. They have licked many of the problems with localizing the radiation and controlling it well enough to affect only what they want it to affect. My advice is to look into this thoroughly and find a center that already has experience with it, even if it means traveling and spending extra money. It's new and new procedures are best done by the most experienced operator you can find. You might try Medscape for info on this one. You'll have to register but it's free. You can also post to the Cleveland Clinic message board. Jon.

Erv, April 8, 2000 - Hi, My wife has posted several comments and recomended this site to me. She was diagnosed with idiopathic cardiomyopathy about 18 months ago. We have been fortunate that we found a good doctor who put her on the latest medications. She has kept a postive attitude and followed all his instructions. Recently she had her check-up and the echo showed that her condition had worsened. She is now being sent to another doctor at a hospital that does heart transplants for a second opinion. She is not yet on the list, but since her condition has worsened, this is a possibility.
     As I write this, I have to admit that I have not dealt with the latest news very well. At first I was in a state of shock, walking around like a zombie. Once this subsided, I went into a state of denial. I tried to do "normal" things to distract myself and somehow tell the world that there was nothing wrong. Only now am I facing up to the reality of the situation. In addition to her illness we face several financial questions. She is still working part-time and we have insurance through her work and mine. If she were to be eligible for a heart transplant, her insurance covers it but mine doesn't. So we will have to face the questions of whether or not we can afford to carry her insurance and for how long. My company policies add to the stress. They comply with FMLA but spend a great deal of time complaining about people who use it. When I asked in December if I could carry vacation from last year to this year, I was told to use it or lose even though I had had not taken many days because we were short handed in my department and did not want to burden everyone. When I recently asked about saving some days from this year to next year in case I needed them to care for my wife and have a little income, I was told that I could file some paperwork and my boss would look into it. He also added that if this was granted, I would have to use them up very quickly since it was our policy to not bank vacation.
     I guess I have a lot of concerns at this point. My wife is still relatively healthy so things are not as bad as they are for other people. I needed to voice my concerns to vent them. I thank Jon for the forum and everyone else who put up with the ramblings.

Jon's April 8 reply to Erv's April 8, 2000 - Hiya Erv, Welcome to Jon's Place. You might want to read up on the Family Leave Act so you know for sure where you stand on it. Also be aware that about half the states have enacted state family leave acts as well, so check into your state's provisions. Obviously, the main problem is that this leave is unpaid. However, health insurance contributions by your employer must continue while you are on the leave. Unfortunately, employers have a lot of leeway in how they apply paid leave toward this Family Leave, so you do need to work out some issues with your bosses. Read more at,,, Even more helpful might be the comments of others who have walked a similar road. I certainly hope others will contribute here.
     For what it's worth, a transplant team usually has better luck improving a CHFer's health than other doctors. This is due to more experience with extremely sick patients and also to the wide variety of disciplines they can call upon for opinions. In other words, going to a tranpslant cardiologist does not by any means indicate that a transplant is in the near future. They would rather get her better than just automatically assume she needs a new heart. Chin up, Erv! :-) Jon.

Karen D's April 9 reply to Erv's April 8, 2000 - Hi Erv, What Jon said about transplant cardiologists is so true! When my husband Bill, was referred for a transplant 1½ years ago, the first thing his transplant cardiologist said is that it is her job to see to it that he would not have to have one. Just to show you how much he has improved: his EF was 12-15% and when they did an EP Study on him, they were worried enough to immediately implant an ICD. With medication, exercise, diet, limited sodium and liquids, and prayer, Bill's EF has risen to 40%, his Vo2Max rose to almost 20 (15 was his transplant team's activation number and his had measured 16.2) and his undamaged heart muscle has gotten much stronger. In fact, we just got home from taking our sailboat out for a few hours. He's got it all rigged up so that he can raise and lower the sails from the cockpit and it's a cruising boat with a cabin, not a racer, so it's not like you think it would be!
     As far as insurance goes, if your wife has to stop working, she should be entitled to continue her health insurance through her job. Bill has done that and we are only paying what his employer would be paying if he were still employed there. And he is eligible to buy the insurance forever through them even if they switch carriers, which they just did. Because he was already covered, they had to find a carrier who would continue to cover him and who would allow him to continue to go to the transplant center. I hope that your wife will improve as much as Bill has. Please keep us posted. Karen D.

Jon's April 9 reply to Karen D's April 9, 2000 - Hi Karen, Is that insurance required by COBRA? I was under the impression that the COBRA umbrella ended after 15 months. Can anyone point me to some resources on this or just straighten me out? :-) Jon.

Erv's April 9 reply to Jon's April 8, 2000 - Hi, Thanks for the quick reply, Jon. My state allows me to substitute some of my paid sick leave for FMLA. This will give me 10 days of pay, which is definitely better than nothing. We will be seeing the heart transplant specialist in several weeks. We have talked about the situation and we are hopeful that he will have more knowledge and resources to help with the situation. Thanks again for the comment.

Marion M, April 9, 2000 - Hi Jon, I have posted a few times over the past 2 years and read all the posts regularly. My husband was diagnosed with CHF in July of 1998. He is obese and has had high blood pressure for many years although there was no other obvious cause of the CHF. In the last 2 years he has developed some pancytopenia (low red cell, white cell and platelet count). The anemia makes him very tired and contributes to his CHF. We are now on our second hematologist looking for a diagnosis that will explain his unusual medical problems. So far all we know is that he has CHF (although his EF is 55), an enlarged spleen, normal liver and kidney function.
     Just this week a surgeon we were referred to for some additional tests has suggested a diagnosis that would explain what is going on. In 1994 he had some emergency abdominal surgery, during which the surgeon now believes they "thombosed" his portal veins. He explained that this is the drainage system of the body that pumps fluid back to the heart. He thinks this system is blocked and the back pressure is what has caused the CHF and the enlarged spleen. The enlarged spleen is what they think is causing the pancytopenia. He also told us there is no way to repair these veins. Can you tell me any more or send me to any links that address the "portal veins?" This is the first time I've heard of this but I have to admit it makes a lot of sense. We have to keep very tight support hose on his legs to keep them from swelling with edema. His abdomen also swells with fluid quite often.
     Should I be relieved that they finally may have found the cause of all his problems or worried that there is no way to correct the underlying condition? I have difficulty understanding all the medspeak although I know they are trying to explain what is going on. Thanks for your wonderful site. You have no idea what a comfort you are to so many of us. Even if we don't post regularly, it is a comfort to read the messages of others who are going through the same experiences. God bless you and your family.

Bette, April 9, 2000 - Hi, It's been quite some time since I posted but my dad is still hanging in there, at age 88. Two things I have done that really have improved his quality of life are I have scheduled a weekly massage therapist to come into the nursing home for a 30 minute massage. Old people (or any people ) really enjoy the "touch." Second, he is now on Paxil which seems to really help his overall outlook on life. For any people who have a parent in nursing home, make a big picture bulletin board with pictures of family and childhood pictures of the patient. It gives them something to look at every day instead of 4 gray walls. These boards really helped me two Christmas seasons ago when I first put it in the home and I hope Jon keeps up all the good work. Thank you.

Sue T, April 9, 2000 - Hello Jon and all, Things here are going much the same. We still have not seen a specialist but hope to soon. Andre's doctor gave him digoxin to see if that will help him. The bigest problem he really faces right now is not sleeping at night. Andre seems to get himself worked up at night. He does have a dry cough but at night it gets worse. He coughs and gags so much and this goes on all night. His breathing pattern changes; one minute he is breathing fine, the next he breathes like he has just ran a marathon, then it seems as if he stops for a few seconds. This cycle goes on all night. This has been going on for over a week now.
     The meds he is currently on are: furosemide, zestril, metoprolol, hytrin, digoxin, aspirin, and he was just given Ambien to help sleep but it has not worked yet. Does anyone else go through this at night? Is there anything that helps? Andre has now stopped going to the gym on his own and just goes to rehab 3 times a week. He says it is better for him to rest than go to the gym. I know we are in early days yet but it seems as if he is giving in. I pray that I am wrong. I think he is in denial as he keeps on saying this is his resting period and later things will be fine. Confused, tired and worried. God bless you all. Sue T.

Jon's April 9 reply to Sue T's April 9, 2000 - Hi Sue, Andre should be checked into a sleep lab for an overnight sleep test as soon as possible. He may apnea, compounded by other problems or by anxiety. The sleep lab is the only way to be sure and it will allow proper diagnosis of any night time breathing disorder. Having been a victim of years of sleep problems myself, I tell you that he will have neither energy nor motivation to recuperate as long as his sleep is totalled. I cannot over-stress the importance of correcting this.
     Some of it may be meds-induced and for that reason, I would suggest getting an official written meds consult by a "Consulting" pharmacist who does them for a living. Most insurance plans now pay most of the $60-100 fee for this. I disagree with Ambien for this problem. It is only meant to help people get to sleep. Andre needs a med to help him stay asleep once he gets there, in my non-doctorly opinion. Jon.

Jon's April 9 reply to Marion's April 9, 2000 - A quick search came up with quite a bit on the portal vein.
     The portal vein system carries all blood from the abdominal GI tract, spleen, pancreas, and gallbladder back to the heart through the liver. At rest, the portal vein carries about 1-1.2 L/min of blood (about 75% of total liver blood flow) and provides 2/3 of the liver's oxygen supply. The portal vein system has no valves to control flow, so pressure there would be disrupted easily by obstruction.
     Portal vein obstruction - which I think is what your husband has been told is his problem - causes compression of the portal circulation and thus, portal high blood pressure. That can be addressed (as I understand it) with surgery, either by using a venous shunt between the portal and systemic circulation to lower portal circulation pressures or by actually removing or repairing the obstruction.
     Because I have not researched this in depth, I can't say for certain whether there is any hope of a surgical "cure." I can say that I would definitely seek another - surgical - opinion on whether this is a possibility for your husband. Fluid retention in the stomach is a major symptom of portal hypertension due to blockage so I would seek at least that one surgical opinion and maybe as many as 3, before I believed that this cannot be relieved surgically. There is a journal for liver and pancreatic surgery that is searchable here.
     A couple of things to keep in mind that I found are: ultrasound techniques like duplex or colour doppler allow portal hypertension to be diagnosed safely in a noninvasive way. Also, it seems that the treatment of any individual patient depends on the special experiences of the responsible doctor. So getting a doctor experienced in treating portal hypertension is a must! If it can't be corrected surgically, they treat the symptoms. Beta-blockers help reduce portal pressure. Be sure to research trials under the search words "portal hypertension" in the medical search engines on the Web. You can find links to some at my Links page. Jon.

Brad, April 10, 2000 - Hi everyone, My 9 year old son has CHF. He has had a VSD patched, a St. Jude valve and a pacemaker put in at age 2. He has had several operations since then to replace the pacemakers and the lead wires to them. We have a strong belief in God and my son has people praying all over the world for him. His pediatrician at Loma Linda Hospital now says it's inevitable that his heart will give out. His EF is about 27. He looks and acts great, wants to run and do the things 9 year old boys do. He also has great faith that God will heal him. Now we're told the only long term survival is transplantation. What an overwhelming situation for my wife and I. We also have 2 daughters, ages 7 and 11. Are there any families out there who have been through what we're going through? Any long-term survivors?

Teresa H, April 10, 2000 - Hi all, Great message board. I am currently caring for my 86 year old father in his home with one level, more baths. My husband and I are sort of camping up here although my husband has his own business and is only home one or two days a week. Our almost grown kids live here or in our home down the road. I have a question. My dad fell and broke his leg the last of January. He was then diagnosed with Alzheimers'. He has had CHF for years, phlebitis (wears elastic socks constantly), emphyzema, and diabetes, which recently became insulin dependant. Do you have any suggestions as to life enriching activities or exercises or anything on general caregiving? His doctor told us the odds were against him making it a year and he is now retaining fluid badly. Does anyone have experience with all these diseases? Thanks in advance. Teresa.

Bobbi S, April 10, 2000 - Hi, My name is Bobbi and my husband is currently being evaluated for a heart transplant. I recently found this site through a heart chat room that my husband John, visits. I find this site to be exceptional and so very informative. A few comments after reading some of these posts. Jon is right on the cath issue. John was diagnosed with myocarditis in 1997 but a cath was not done since he had no chest pain, swelling or history. A year later, he became very dizzy and was diagnosed, after a cath, with severe coronary artery disease, an EF of 19%, and too risky for a bypass. He had an ICD implanted but he did return to work after about 2 months. He was put on a variety of meds including Coreg and has done well until recently. During the last few months, his ICD has fired a number of times and he had another cath which revealed an ejection fraction of 15%. He is somewhat depressed since he cannot work or coach our kid's Little League. He does not seem to have the breath or energy to even leave the house except to go to docs.
     We have excellent HMO coverage which continues to pay for an EP specialist and to go to the Hershey Medical Transplant Clinic. Fortunately, our coverage also includes prescription drugs with a minimal copay. Both his doctors are great and easy to talk to. They admit when they do not know. Our primary care doc also knows when he has to refer John to the specialists, which is a lot. I find myself daunted by all of this. My hushand is 49 and I am 47. Our children are 8 and 13 year old boys who are also somewhat confused by all that is going on. How sick will he have to get to actually get a transplant? Jon, this is a great site. Keep up the good work; it helps all of us very much!

Sue T's April 10 reply to Jon's April 9, 2000 - Hello Jon, Just a quick note to say thank you for your quick response as always. We are going to call the doctor today. We will keep you up dated. Thank you again. Sue T.

Bill D's April 11 reply to Teresa H's April 10, 2000 - Hi Teresa, If his doctor is willing to say that he won't live for another 6 months, you could call Hospice. They are kind and compasionate. They will talk to him and you and explain what they will do. They provide palliative care and keep him as comfortable as possible while he waits to die. No one has the cure for all those diseases. If it was me, I'd like to get it over with and not suffer the travails of aggressive medicine. Just my 2¢. Bill D.

Jon's April 11 reply to Teresa H's April 10, 2000 - Hi Teresa, I don't have much experience in caregiving for an elderly parent (yet). However, there are sites that specialize in support for people in precisely your situation. See the Links page for some Urls to caregivers' sites. I hope some people who have actually been through such a situation post, since they are best qualified to help you find ways to make your father's days more enjoyable.
     One thing to keep in mind is that if your dad is currently cared for by "his" doctor or by different specialists individually, his care may not be the best regardless of how good each doctor is in his own right. I am about to send a mailing to my mailing list recipients about the difference a team of specialists working together can make in quality of life, cost of care, and hospitalizations for people who have chronic illlnesses, including CHF. A team of specialists coordinating their care and overseen by a clinical pharmacist can make a huge amount of difference and could turn some patients' around so they no longer have a death sentence over their heads.
     This team approach does not make use of Bill's "aggressive" care. I hope that phrase does not catch on since "aggressive" care means "best possible treatment" in medical lingo, not referring to maintaining life beyond a patients' wishes. The team approach just makes sure the best treatment is being used all the time for each patient in every area of his health. Many patients are terminal, and for them hospice may be a great option. However, I believe that uncoordinated and less than optimum care, places many people in that category unnecessarily or far too soon.
     I'll mail you a copy of the article I mentioned. You might want to "aggressively" <g> search out a CHF clinic using such a team approach, to see if they can help your dad. Such clinics - with multi-disciplinary members - are usually run out of hospitals hosting an organ transplant unit, or out of teaching hospitals. Be sure to contact your local hospital's social worker for a list of local resources for caregivers of elderly patients, and be sure to look through your local phone directory (Yellow Pages) as well, to see what unknown help is just waiting to be called! Jon.

Leah S, April 11, 2000 - Hi, My husband was having severe stomach problems and in testing was found to have an enlarged heart. A cardiologist started him on some meds. About 2 weeks later, we took him to the ER with stomach problems again. About 2 blocks from the ER, he slumped over. His pulse was about 30 and by the time we got to the ER, he was unconscious and stuff was coming out of his mouth. Nurses got him into the ER while I parked the car. When I went inside, I was told his heart had stopped. He was revived but has had an ICD/pacemaker implanted.
     He had more stomach problems a few weeks later. All his meds were stopped and he got better. When his meds were restarted he got sick to his stomach again. The cardiologist says to see the family doctor. The family doctor says he has no heart problem. During another trip to the ER, they did a GI series and found a bowel obstruction, but said they could not operate due to too-high risk. He is now on a low-sodium, low-fat, no-fiber diet with lots of bowel stimulants.
     Does he really have CHF and cardiomyopathy? The first time his EF was 20%, the last time they said it was 15%. His "episodes" have always been preceded by stomach problems. Is this common? He has no history of heart problems, clogged arteries or high blood cholesterol level. My husband fell on a construction site 16 years ago and was left permanently disabled. He has seen doctors all those years with no mention of heart trouble.

Janine, April 12, 2000 - Hi, I just found out that my 68 year old mom has CHF. My mother is the private kind who won't really tell you all there is to know because she doesn't want us to worry; like we aren't anyway. Her situation, from what I can decipher, is pretty grim. Here is what I know.
     She is obese, has very high blood pressure, diabetes, angina, and has apparently had one heart attack about 2 years ago that caused her to lose 1/3 of her heart. She was unaware that she had suffered a heart attack. They just discovered this when they discovered her CHF. She is taking Zestril and a diuretic. I live many states away from her and most of my other siblings live 40 miles away. My dad is still working and is only home in the evenings. Anyway, I can't seem to be clear about how much time she has left. Talking to her, she says, "It's no big deal," although in speaking with her over the phone she is breathing heavily just carrying on a conversation. She doesn't know very many specifics when it comes to her condition. Either she doesn't really know or doesn't want to know.
     In the past, with her diabetes, she has never stayed on her recommended diet and exercise program, and I am sure she won't stick with it now either. Have any of you ever known anyone in this situation? I have a 5 year old in school, due to get out in mid-May and would like to postpone the trip until then, but I wouldn't forgive myself if my mom died before then. I would love to talk with her doctor about it but I don't think they'd give me the information since my mother is so secretive about it. I know all circumstances are different but any input from any of you would help me out. Thank you very much. Janine.

Jon's April 12 reply to Bobbi S' April 10, 2000 - Hi Bobbi, Have you read through the Transplant pages? The info and links there might give you more information than I can in a post. You might want to read this post as well. Has your husband seen a transplant cardiologist yet or been scheduled for an evaluation? Jon.

Jon's April 12 reply to Leah S' April 11, 2000 - Hi Leah, Your account has me confused so I don't know what to say. Maybe you should slow down and try again. What heart tests did he have? When? What were the results of each test? Which doctors told him he had serious heart problems? Why do these doctors say he has a serious heart problem but his family doctor says he does not? If you can try again a bit slower, maybe we can help.
     With what I know, stomach problems are not directly related to CHF, although any serious chronic illness (perhaps including bowel obstruction) which disrupts the body's normal functioning can affect the heart. Perhaps your husband has electrolyte imbalances (potassium and magnesium) and vitamin and mineral deficiencies due to his being unable to normally process food that are screwing up his heart's rhythym, but that's only a wild guess. Jon.

Kathryn, April 12, 2000 - Hi Everyone, It's been awhile since I posted. My son's cardiologist is switching him from 25mg Captopril 3 times a day to 10mg Lisinopril twice a day. When I looked up this drug on the Net I saw that it can be problematic for people with low BP. His current blood pressure is 110/75, which isn't too low but he still gets dizzy sometimes. I also read that the Lisinopril dose should be started quite low and titrated up under close care. The other drugs my son takes are:

     Does anyone else here take this combination? I believe it is the same drug (basically) as the Captopril but I am concerned about the start up. The info on the drug says that the peak effectiveness of this drug is 6 to 8 hours after taking it. We know about the interval of time between the beta-blocker and the Ace inhibitor. Does that still apply with this new drug? How might that overlap when the effectivness of the Coreg kicks in? Thanks.

Peggy, April 12, 2000 - Hi, Just an update to let you all know that my Dad had good news from Shands on Monday. He is not yet being put on the transplant list and he is not really sure he wants to be. He is actually in good health for someone who is dying with CHF. He exercises 3 times a week at the YMCA in their seniors' program, maintains a very low sodium diet, and is trying to enjoy life. The CHF specialist here at Shands adjusted his medication somewhat and will see Dad again in June. What a difference a Heart Failure Clinic makes! The cardiologists basically told us at Christmas that Dad would not be around long. Anyway, I thought I'd share the good news and stress getting your loved ones to a CHF specialist. We had a hard time getting Dad to go at first but what a difference it has made! Dad no longer feels as though he should just "give up, go home and wait to die" which is how the cardiologist made him (and all of us) feel. Best wishes to all!

Jeanette's April 13 reply to Kathryn's April 12, 2000 - Hi Kathryn, I have DCM and am on 20mg Lisinopril a day, 6.25mg Coreg twice a day and 40mg Lasix (furosemide) each morning. The dizziness goes hand in hand with the Lisinopril/Coreg combination. My cardiologist had a tough time trying to regulate it to a safe measure for me because every time I would get up from a sitting position I would have to drop to the floor because I would get so dizzy and my blood pressure would plummit to 70/40. He since has found the right doses and I am doing much better but still have dizziness just not as bad. Your sons' cardiologist may have to cut back on a med dose to get the configuration but unfortunately a little dizziness goes with the Lisinopril and Coreg combo from what my cardiologist says and not much you can do about it. I hope I helped you out. Jeanette.

Karen D's April 13 reply to Jon's April 9, 2000 - Hi Jon, This is a follow-up to my e-mail back to you last week about insurance under the COBRA act. What I have found out all points to COBRA being for those employees who resign "voluntarily" from their jobs. It allows the employee to continue coverage for up to 18 months by paying the premium plus an administrative fee. It does not seem to apply to those who "retire." If the employee is eligible to take retirement, then I don't think there is any limit on the number of months that the former employee can continue to be covered by the group insurance, as long as that retiree pays the premium or whatever is required by the former employer. It may be that not all employers have to offer group insurance to their retirees. Bill worked for local government, and they do. I hope this helps somewhat. Karen.

Jon's April 13 reply to Karen D's April 13, 2000 - Hiya Karen, Thanks for the update. I seem to recall that I got pretty frustrated trying to get definite answers on the issue waaaay back when I looked into it. Luckily for me, as long as I remain a member in good standing of my labor union, whether retired ot not, I get my full health insurance for about half the normal cost. Jon.

Bobbi S' April 13 reply to Jon's April 12, 2000 - Hi Jon, Thanks for the return message. John has been seeing both a transplant and an EP cardiologist since 7-98. They both indicated that "clinically" his numbers and his actual physical condition did not match, including a 20% EF. However, they did implant an ICD because he went into V-tach very easily in the lab. He received no shocks until last fall and then he started having a-fib 9-99, 12-99 and 1-2000, which led to V-tach with a shock. Late in January, he received 6 shocks in one minute after going into V-tach. He received another shock in March after another V-tach episode.
     A recent cath revealed an EF of 15% and not much viable left ventricle along with various other blockages. Bypass and TMR has been considered and rejected as too risky on various occasions. He started the evalution testing today at Hershey Med Center, which is part of Penn State University. We also met the transplant coordinator today and then John goes back on Friday for more tests and then a follow-up with the transplant doctor next week. John hopes their transplant team is as good as their football team! <lol> He does maintain pretty good humor but is not too happy about "being grounded." He has enough sick leave to remain on the payroll until November of 2000, but I know that he is worried about Disability. We read your pages and The Manual and I told him that he should start the SSD inquiry now. I will check with our state policies.
     You have Pennsylvania listed as one of the states that are testing the proposed SSA changes. Can he still be being paid for sick leave and receive SSD or does he have to wait for 6 months after sick leave is over? We really have learned quite a bit from your site and we are still seeing new things all the time. I am going to start checking out The Archives for good reading material. Once again, I would like to say that our HMO has been paying all the bills and they even call to reassure John that the transplant will be paid for. One last thing not to worry about.
     Jon, do you think this means we are on the fast track? Thanks again for all this wonderful info. I can't imagine the time and effort that has gone into this site. Bobbi.

Jon's April 13 reply to Bobbi S' April 13, 2000 - Howdy-doo Bobbi, Thanks, the site has more effort in it than most people can imagine but it's worthwhile when just one person finds that critical piece of info so hard to track down in the vast wasteland of WWW medical info! Fast track? I have to say no. That isn't bad, it's just that there really is no fast track to heart transplant. If everything goes just so, it may seem fast, but later when you look back, it won't seem so smooth, I think. <g>
     Yes, John should be able to collect sick leave and SSD simultaneously. I am not an attorney so you need to verify that, but I see no conflict. SSD is a benefit to the American worker that is already paid for. That's why you can also collect a Disability pension in addition to SSD, as I do. SSD is a stand-alone benefit, not dependent on other outside benefits one way or the other.
     Now, I plug myself in a selfish way. If John wants to and is able, I'd love to add his story to the Transplant pages, alongside Taavi's. It's like pulling teeth trying to get people to write their transplant experiences and share them with the "public" and in many ways I understand that, but it would sure be a valuable resource for those facing the same decisions. Jon.

David G, April 15, 2000 - Hello, My wife was just put on a new drug for a-fib. The drug is Rhythmol. Does anyone know about this drug? She has CHF and has been battling chronic a-fib for about 2 years.

Sue T, April 15, 2000 - Hello Jon and everyone, I just wanted to write a quick note to say how things are going. I finally got an appointment for my husband to see a specialist on Monday. He is still not having the best of times. He did sleep last night better than he has for 2 weeks but he is still weak and has no energy at all. I feel so useless. There is nothing I can do to help. I really felt the blues until I just had a message from someone in a much worse situation than I am. When they say there is always someone worse off then yourself, they are not wrong. God bless you all and all stay strong. Sue T.

Kat, April 15, 2000 - Hi, My husband is not taking this well at all. Of course, I do not know how I would take it either if I was in the same boat. Every waking minute he talks about himself and I know what every part of his body is feeling every minute of the day. He can't seem to talk of anything else. I love him very much and I know he is afraid. I try to get him interested in other things to take his mind off himself, but it is so hard to do. He used to love baseball, reading, and traveling, among other things. I guess what I'm really worried about is myself. I dont't know how much longer I can handle it mentally. He's the one who is in trouble and I try to be so patient but right now I just want to do nothing but go somewhere and cry. I have to make his life as happy and comfortable as I can but he makes it so hard to do. He has had a couple of panic attacks in the past few months. I have read some of your letters where you said your spouse was uncomplaining. What can I do to let him know how much I care but that I'm at my breaking point with all the complaining? I have told him how I feel but it isn't working. Any info will be appreciated.

Ben B's April 15 reply to Kat's April 15, 2000 - Hi Kat, You didn't say how long it has been since your husband found out about his illness, but if it is fairly recent I think he will probably come out of it after a little while dealing with the shock. For about 6 months I drove everybody nuts with my worries and constant talk about my illness and impending death. Once I found this site, I must have checked it 20 times a day in my obsession. I still don't know what I expected to see. Everything I read everywhere else convinced me I wouldn't be around much longer, and couldn't do anything. Finally I snapped out of it, and am leading a fairly normal life. Although there are some gravely ill people, I think many, if not most of us, do okay if we admit it. The worst thing was this moronic 5 year life span quotation, for which there is no validity at all as far as I can see. I keep reading these studies which say "despite the advances the life span is still 5 years," and then the studies go on to present evidence totally contrary to that! I think time should help out if you can hold out.

Gus R's April 16 reply to David G's April 15, 2000 - Hi David, I hope someone who has first hand experience with Rythmol answers your question, but until then I'll toss in my 2¢ worth. I haven't taken it myself but it seems to be an anti-arrhythmic drug with an average sized list of adverse side effects and warnings. Jon answered a post last year on Rythmol which can be found archive9-99a.htm#Jon9-13replyJennifer9-13. His answer contains several links to more information on Rythmol.
     If you are new at drug investigating, the warnings might be a shock. These warnings are real, and the more a drug does, the more problems it can create. Just keep in mind that in most drug trials, the list of problems caused by placebos is much longer than one would expect also. You can also compare Rythmol to Amiodarone and Sotalol, which are 2 anti-arrhythmics with even more problems than Rythmol.
     I do have first hand experience with a-fib and know that many people live fairly normal lives with it. I am not one of those people. There are many problems that are far worse than a-fib but it bothers me enough to use almost anything to avoid it, and I am not alone. Best wishes, Gus R.

Kat, April 17, 2000 - Hi, I hope everyone had a good weekend. Today I have one quick and probably often asked question. My companion is going in for his usual hour on the treadmill and then may get to see a cardiologist. The question is, "What is the difference between a cardiologist, a cardiac surgeon and a CHF doctor?" He is being seen by a cardiologist now. Any answers? Thanks, Kat.

Jon's April 17 reply to Kat's April 17, 2000 - The American College of Cardiology site has a good explanation of cardiologist specialties. It's available through the Links page, under General Cardiology: All About Cardiologists. A cardiologist is an internist who takes further education on the heart and circulatory system. Then many go on to take yet further education on a specialized area within the realm of the heart and circulatory system, such as the electrophysiologist who specializes in the heart's electrical system or the interventional cardiologist (often called an "operator") who specializes in invasive procedures such as angioplasty. The CHF specialist is a cardiologist who specializes in the treatment of congestive heart failure. A cardiac surgeon is a cardiothoracic surgeon who specializes in certain surgeries of the heart.
     CHF is such a rapidly changing field that no generalist (internist, cardiologist, GP) can hope to keep track of all that goes on in the field and keep up on his other responsibilities, thus the importance of having a CHF specialist. Jon.

Shirley M's April 18 reply to Theresa M's April 10, 2000 - Hi Theresa, Jon and everyone, My Mom is 80 and suffers with CHF due to malfunctioning aortic and mitral valves. She had an aortic valve replaced 12 years ago, but it has stopped being efficient and the opening in it is very tiny. The cardiologist has recommended surgery to replace both valves. She also has kidney failure, COPD and cancerous lesions in her lungs.
     Mom has refused any surgery and does not want to be put on a ventilator. She spent 2 weeks on and off a ventilator in intensive care about 2 months ago. She was so full of fluid, her legs were weeping. She's had difficulty swallowing ever since the ventilator. I can't begin to tell you all the horrible symptoms she's had. The anxiety attacks where she can't breathe were happening a couple times a week. Mom came home from a rehab hospital last week. After one day, she became nauseous and couldn't catch her breath. I rode in the ambulance with her to the ER. When I told them "no ventilator," the doctor became angry. Mom was unconcious at the time. It was as if he was trying to say "Why are you wasting our time?" Mom came out of it ok and was scheduled for a regimen of tests that she was refusing.
     Last Friday her breathing was again very difficult. The pulmonologist told me she probably wouldn't last the night. He asked me if I would like her to go into a hospice. Mom and I both agreed and she was transported to a new hospice here in Las Vegas on Friday night. I can't begin to tell you the calm that has come over all our family members. Mom feels wonderful! She's still on oxygen but is breathing so much easier. No more IVs, diuretics, heart, or blood pressure meds. The only meds she gets are morphine for pain and ativan for anxiety. She's finally able to sleep through the night. She was unable to sleep in the regular hospital. Mom told me yesterday, that she doesn't even feel sick! It's nice to know that whatever time she has left, will be spent comfortably.

Jon, April 18, 2000 - Hi everyone, I post this because I am disturbed by how many messages I see (e-mail as well as posts) from people who think that it is one or the other - good medical therapy (heart meds) or feeling good at end of life (which many people assume only happens with hospice care). The two approaches can be combined. Many of us have bad experiences with doctors, but please do not assume that no doctor will make a person comfortable as they die while still continuing treatment for the underlying disease. We must discuss this at length with our own personal physicians, so we know ahead of time how we will be treated. Discuss it now and change doctors if yours does not agree to follow your wishes. He should be quite willing to discuss this at length with you. If not, fire him.
     I agree that if you want to die or are ready to die or however you phrase it, hospice is the way to go. No one, myself included, wants to suffer on the way from this life to the next. The one big advantage to hospice is that it is done at home. However, heart meds can also be given at home, guys. After all, we've been taking them at home for years, haven't we? Why not combine the two types of care? Powerful relief-type therapies like inotropic therapy are already being done at home for CHFers.
     Please be aware that by stopping all heart meds, you really are sealing the death of yourself or your loved one. Death is not reversible! So, please make a proper effort to be sure that this is the real wish of the person involved and not just depression or pain speaking. Those conditions (depression and pain) can be solved without stopping heart meds! You must be willing to search out a doctor who will work with you and for you, and that's not always easy but it can be done. Morphine is a venodilator and a good CHF specialist will use it whenever it is needed to relieve anxiety, pain, and decrease afterload on the heart. Having bad experiences with doctors is to be expected - there are good ones, bad ones and every point in between. Just don't let those bad experiences prevent you from searching out the doctor who is right for you, and who will design your care with you.
     There is a trial underway combining hospice-style care (pain/depression relief, symptom masking) with aggressive (best) drug therapy for the underlying disease (symptom relief/progression stopping). I believe that this will form the basis for end of life care for CHFers within the next 2-3 years. It's the sort of care I want. I don't want to give up the possibility that my disease can be halted just to feel better. I also do not want to give up feeling better whether my disease can be stopped or not. One does not have to exclude the other. Why should it? Why hospice and the medical "establishment" are at odds on this is easy. Both go too far in a single direction. Let's hope for, and push for, a reasonable combination. Until we demand this from our doctors, we won't get it. Jon.

Sherri, April 18, 2000 - Hi, My husband has DCM and we just found this out in January. I often read that a lot of you refer to DCM as CHF. I asked my husband's cardiologist if this was the same, and he said that CHF is a bunch of symptoms caused from a particular heart condition. He said that not everyone with DCM or other conditions have CHF. My husband had fluid on his lungs at diagnosis and a month later was not in CHF. If CHF is a complication of DCM, then why do all of you refer to DCM as CHF? From what I have been told, it is separate.
     I also have learned that the statistics for CHF apply to people who "stay" in CHF; whose symptoms do not get better with medication. I am posting this because a lot of people come to this site to get information and I was very confused at first. I would appreciate anyone's response.
     My husband is 31 and was diagnosed in January with fluid on his lungs and shortness of breath. He was not hospitalized. He was on furosemide for a month but has since been off it. His lungs remain clear. Since one week after treatment he has been able to do anything he wants, such as walking on a treadmill at 3½ miles an hour for 30 minutes, riding a bike, work, rake leaves, etc. He says he feels great, with no coughing, shortness of breath or tiredness. After 3 months of meds, only 1½ of those months on a low dose of Coreg, the right side of his heart went back to normal size. Even though his left side stayed about the same as when first diagnosed with an LVEF of 30%, it was an improvement. I guess what I am trying to get across is that I don't want people who are coming to this site to get scared off by some information that might not be the most accurate. I have also learned that there are people who live a normal lifespan with DCM and not all DCM or IDCM will require a heart transplant. I think this is a great place for information and I feel there are a lot of courageous people here. This is a great site and I would like to say that there is always hope.

Jon's April 18 reply to Sherri's April 18, 2000 - Hi Sherri, Welcome to Jon's Place. You should have read my site or at least looked at the Site Index! <lol> Start with The Manual. Then get back to me with any inaccuracies or lack of info. As for statistics, I don't place much faith in them. They are out of date as soon as they are published, literally. We have people here who post to let everyone know that lots of people outlive statistics on a regular basis. One recent thread about it can be found using the site search engine to look for "longevity" in The Archives.
     Your husband may be one of the lucky few who recover full heart function and never backslide, but those lucky people are in the minority by far. Shortly after being placed on meds after diagnosis, I was able to function normally for over a year and near-normally for another year after that; It's not at all unheard of, especially if you are fit to start with aside from your heart. The effects of cardiomyopathies can, however, be cumulative. My EF then was 13% (by cath) with severe heart dilation but after the meds had a couple of weeks to work, I felt great! Now, my heart is normally sized and my EF is 40-45% and I feel lousy. I am always short of breath and short on energy. So, you see, the disease can and usually does progress. If you don't feel this site expresses hope, I have failed miserably and should probably resign! :-) Jon.

Tandy K, April 19, 2000 - Hello everyone, I have not posted in a very long time but wanted to share some wonderful news. Brandt, my 2 year old son, who was diagnosed with DCM and CHF at 2 months old, had an echo recently and his fractional shortening was 28 and his EF was 45%. These are the highest numbers yet! I realize they don't mean much by themselves but he is doing great! We moved in November and I quit working and am now staying home with him. He has not been sick once since we moved; no ear infections, no colds, nothing. It has made a world of difference. I guess it's especially significant because when he was diagnosed I ran to the library and started to research and the statistics for life span were 2-5 years. It has been 2 years now but now, thanks to this site I know that those are not accurate with good medical care and the improvements in treatment.
     He is such a normal 2 year old, and I thought I was going to get a break. <g> He escaped out the front door and got to the end of the block on his tricycle the other day before I could catch him. All this from the little boy who should not have the endurance to keep up with his peers or play sports. Thanks Jon for the info you compile, because without it I would probably still be lost and have no understanding of this disease. Tandy, Mom to 4 boys.

Jon's April 19 reply to Tandy K's April 19, 2000 - Hiya Tandy, That's great news! Let the little tiger loose and just enjoy watching the whirlwind. <lol> Jon.

Barbara P J's April 19 reply to Sherri's April 18, 2000 - Hi Sherri, I'd like to add to Jon's statement something that might surprise you: My insurance turned down rehab because of the DCM. They said that was not covered but CHF, if controlled, was a covered item. Now CHF is symptoms and not a diagnosis and DCM is a diagnosis. It just goes to show even insurance companies aren't clear on everything.

Jon's April 19 reply to Barbara P J's April 19, 2000 - Hi Barbara, Like you, I think it's all just playing with words. CHF is a diagnosis but it is not a disease. You can have chronic CHF, as I do, and as most of the people here do. It is either compensated or uncompensated. If it is compensated, then you have CHF but it is under control with meds to the point that it does not rear its ugly head very often. However, it is still there; just kept under control by meds. If your CHF is uncompensated, it cannot be fully controlled with meds, period. This usually leads quickly to end-stage heart failure and death.
     DCM may be the disease underlying your CHF (or HCM or RCM or PPH or CAD or whatever) but CHF is allowed as either a primary or contributing cause of death on a death certificate so it is actually considered a condition in its own right - with the power to kill - despite the medical technicalities. Confusing, ain't it?! :-) Jon.

Linda Horn, April 19, 2000 - Hi All, I'm new and very happy to have found this board. My Mom has CHF, COPD and diabetes. She's 75. I came home to care for her 2½ years ago. Last November her doctor said her lungs were done, and that all he could do was keep her comfortable and keep her bowels moving. She was on 17 meds at the time and without telling me she quit all her heart meds as well as other meds for various problems. She quit tenormin and norvasc and plavix and her nitro patch. She had compression fractures of her spine and stopped taking miacalcin as well. Because of swelling, she switched herself back to Tenoretic, which has a diuretic in it. Her swelling went down. I have to say she seemed to be doing better!
     I can tell now though that she is not. Her doctor said he wouldn't go near her with a diuretic. I think it is because her electrolytes had an imbalance a few years ago. He's not easy to talk to and that is why I'm here. I need some answers. I'm alone here with this and wish I knew what to expect next. Mama can't pee hardly at all during the day but is up and down all night long. Her belly is huge and her cough is bad. We moved a portable potty into her room cause it is too much effort for her to walk to the bathroom. Mentally, she struggles for words. She can't bathe herself or hardly do anything. Is there anyone else out there who knows about these multiple problems? She is soooo tired. I'm feeling very guilty that she quit her meds, but I can't make her take them. Thank you, Linda.

Jon's April 19 reply to Linda Horn's April 19, 2000 - Hi Linda, It sounds to me that if she had a doctor who would work with her, she might take her meds, since they would then be geared toward relieving her symptoms. A doctor who won't give a patient with edema a diuretic is no doctor! Get her to a CHF specialist. Tell her the truth - that such a specialist is an expert at relieving these exact symptoms and that he won't force her to take any meds she can't tolerate but that they can work together to get it right. She needs proper treatment and soon. Jon.

Susie's April 19 reply to Shirley M's April 18, 2000 - Hi, I also did not want to be put back on a ventilator, but my children thought this was because I wanted to give up. We watched my father-in-law go through this and took care of him, but they gave up on him before he ever had open-heart surgery. So after he had a stroke and everything else, I asked the doctor to call in hospice and he wouldn't because he said the way he was he may still live too long and if my dad lived past the 6 months the doctor would have to pay them back. My father-in-law was never on a ventilator other than when he had heart surgery. I have been on it quite often. My doctor and case manager with our insurance said if there is a chance of me getting well enough to come off it, they have a right to put me on it.
     Here hospice pays for heart medicine and all and you can die at home but they insist you take your meds. When the doctor finally agreed to call them in the next day, my dad died. The doctor had taken him off some of his meds, and I wonder sometimes if this isn't what kind of helped him along. I am not afraid of dying but I think that taking my meds and doing as I am supposed to will help me. I was given a year and outlived that. Now, they say a month to 3 months and I intend to outlive this also. So I don't know how it works where you are but here, if hospice steps in, they get the list of instructions and meds from the doctor and go in daily and make sure the patient takes them.
     I think our days are numbered anyway but I don't intend hospice, myself, or anyone else to help rush my time, I have too much to live for. I have left it up to my doctor now, that if he feels I will get off the ventilator within a week and get back to where I was, then he has my family and my best interests at heart. I told him I am not ready for hospice since I am going to outlive him. I asked him who is to replace him, so I know who I will see next. He just laughs at me! The last time I was put on the ventilator, I was upset since I had previously told them no, but the children say that I am still here with them and doing alright so I am leaving it up to my doctor. I know he will not do it if there is not much of a chance. He said he would send me home and get hospice involve if things really got worse all at one time and I was not really with it. So I do have to say that he does try to do what the family wants and what we usually agree with.

Sherrie, April 19, 2000 - Hi, I am posting again to tell everyone (most importantly Jon) that I by no means meant that this site was not a great source of imformation. Please, forgive me if that is the way it sounded. I am so sorry if that is how it was taken. Yes, I have read The Manual and it is very accurate. I read it the very first time I visited this site, which was about 2 months ago but sometimes when I read through the posts, I do get confused; like with the CHF. It was stressful enough to hear that my husband had DCM, but when you read something that makes you think that he will never be out of CHF, it crushes you. I am so sorry for insinuating that the imformation was wrong, maybe I chose the wrong words in my confusion. I was thinking after reading some of the posts, that the fluid in his lungs would never go away and he would always have it, even though I read what I read in The Manual. When you are frightened, the difference between DCM and CHF is very important. I am sure you all feel the same way about your loved ones with DCM as I feel about mine, and I am sure you all can understand the desparation, frustration, and horror you feel when you hear news like DCM. My husband and I grew up together and have been married for almost 12 years. We have two children, ages 9 and 11. I am 29. So you can see how devastating this was for us, considering our age. This site does offer hope, it is just when you read about all the people who are doing so badly, hope is sometimes forgotten.

Jon's April 19 reply to Sherri's April 19, 2000 - Hi Sherri, I just assumed you hadn't read The Manual since the facts you said weren't to be found accurately here are contained in it. It explains about DCM versus CHF, and about longevity, and everything else I could think of that relates to living with a weak heart. I made it as positive as I could manage and thought I had done a fair job of it. Oops! :-(
     Message board posts are written by people about their own experiences. This is what makes the posts so valuable even though what applies to one person may not apply to the next; The people and experiences are not theoretical - they're real. How an experience is perceived by the person going through it can be as valuable as the facts behind the experience. These experiences - including yours - are a valuable learning tool for me and everyone here. You just have to accept message boards for what they are - message boards.
     I have changed the warning at the top of the page to be sure everyone coming here is severely warned that nothing here can be assumed to be fact. For what it's worth, I have always tried to post a message of my own to correct any post containing baldly inaccurate "facts" and I do not post the worst inaccuracies at all. The "data" pages on my site, however, are accurate. Doctors' message boards are available though my Links page, where all the answers are given by doctors.
     I am interested in hearing more about you reading that your husband would never get out of CHF. Did you ask that question and receive a posted answer to that effect? Did you ask about the fluid in his lungs and receive the answer that it would never go away? If you got that impression from posts directed to someone else, did you ask if it applied to your own situation? I need answers to these questions if I am to understand how to improve this site, so please let me know. This is intended to be a place where you learn to live, not die; take control, not give up; get support from people who understand, not learn to despair.
     For everyone's information, if you read a post that blatantly disagrees with The Manual or one of the pages I wrote, please post a question asking that it be cleared up - that's one of the reasons the message boards are here! The forum is for patient-to-patient support, not to second-guess doctors or to make a self-diagnosis or to decide prognoses sight unseen. Jon.

Pam, April 19, 2000 - Hello to everyone out there, I haven't checked in here for quite some time but I felt the time had come. My friend Randy was diagnosed with CHF about 8 months ago. He went through Zestril, digoxin and Lasix meds for about 5 months, and though is still taking about 40mg of Lasix a day, he has stopped taking the others because of dizzy spells, blacking out and feeling poorly. He's now taking 120mg of CoenzymeQ10 per day, and an herbal fiber detoxifier 2-3 times a day and feels better than he did when he was taking the other stuff. It may not work for everyone, but I know the CoQ10 has strengthened his heart and the fiber cleans out his system and helps lower cholesterol also. I don't know if it will extend his life but I do know this more holistic approach has made him much more comfortable. These products work. Keep the faith, Pam.

Jon's April 19 reply to Pam's April 19, 2000 - Hi Pam, I'm afraid you've made a mistake, although it's a very easy mistake to make. He feels better because his hormonal system is compensating for his weak heart. Of course, that is also wearing out his heart at a tremendous rate and will kill him as surely as a bullet. I didn't post your sales pitch but I posted as much as I did because I wanted to be sure someone told you that you need to read The Manual, the ACE Inhibitor page and the Coreg page right away so you'll understand why he feels better now but will soon be feeling a whole lot worse if he has a weakened heart. Most CHFers, including me, have forgotten to take their meds at least once and freaked out at how much better they feel. It's a trade-off - less life quality for longer life. That's Randy's call. I sincerely hope you're not pushing him into an early grave. Jon.

Bobbi S' April 20 reply to Jon's April 13, 2000 - Hi Jon, I talked to my husband and he is considering your request. He is going for the last of the tests tomorrow to get listed so maybe he will feel up to it after that. I think it would be good for him. Also Jon, I truly feel that your site offers much hope! Especially for those who are looking for hope and help and support.
     In reply to Tandy K from 4/19, my son who is now 14 also has heart disease: tricuspid atresis. My first reaction was to read as much as I could at the library. However, I soon learned that you have to check the copywrite date. Much of what I read was outdated and I went through a lot of pain thinking things were 100% bad when the actual outlook was much better. Happy Easter and holiday to all.

Cheryl T, April 20, 2000 - Hi, My husband Jim was diagnosed with CHF in February. His EF was 20%. He is on Monopril, Lasix and digoxin as well as restricted fluids and sodium. He was in class 4 heart failure in February but now you'd never know he had been sick except for all the meds. He's even gone back to his job as a hospital security guard 3 days a week. He is scheduled for a pulmonary stress test and TEE next week. Since he seems ok now, will the tests show the damage to his heart or will the meds mask the extent of the damage? This is a real concern to me. Also, if he were to discontinue the meds, would he slip into class 4 heart failure quickly? Since he feels so well now, is he endangering himself by returning to all his old activities and not resting like everyone says he should? Thanks for this site. I read it often, and I've learned much from it.

Aubrey E, April 20, 2000 - Hi, I don't have this disease but I just heard that my only grandmother just got it! I would like some help coping. Do you have any suggestions? Please help.

Laura, April 20, 2000 - Hi, Thank you very much for this site. My 53 year old husband is in final stages of CHF. The cardiologist told me it is only a matter of time. They have contacted Shands Hospital in Gainesville, Florida to no avail. His heart function is down to 7-11% and he is so very weak. I took him to have his Coumadin checked this past week, which completely drained him. 911 was called because he was so dizzy and when lying down, his face turned very red, as well as his eyes and his ears turned purple. This is a very difficult time for he and I. I try very hard to keep his spirits up. Thanks for listening.

Karen D's April 20 reply to Sherri's April 19, 2000 - Hi Sherri, I'm glad that you wrote back to let Jon know that you do appreciate this site. I am also wondering why you were so upset? When my husband was first diagnosed we were told that he was in end-stage cardiomyopathy and had no chance to live unless he got a heart transplant. That information came from his doctor - not from this site. This site is where we learned about people like Jon and Bill Drummond and others who were given pretty bad odds a few years ago but are still here today, and are reaching out to help all of us learn to cope the best we can with CHF. We learned about Coreg from this site, we found help for low-sodium cooking through this site, we made friends through this site, and correspond with some through individual e-mails as well as posting messsages. I know you must be scared and worried but you really have come to the right place to get some support from others who are going through it, too. Please feel free to e-mail me if you want to talk. Karen.

Jon's April 20 reply to Bobbi S' April 20, 2000 - Hi Bobbi, Thanks for getting back to me! :-) I'd be delighted with anything he might decide to send. Be sure to tell him that if one bit or piece of the process sticks in his mind, it's fine to just tell about that one part. There's no requirement on length or even accuracy. The transplant stories are for personal experiences. If he's not up to it, be sure to tell him that's cool, too; Like he doesn't have a full enough plate already, right?! <g> Jon.

Jon's April 20 reply to Cheryl T's April 20, 2000 - Hi Cheryl, The Vo2max test (I am guessing this is the "pulmonary" test) will be accurate; meds or no meds, feeling good or feeling bad, so that is not a worry. The TEE will to some degree reflect his condition as it is that day, so on a good day the results might be slightly better. However, because it's an internal form of echo, it will be more accurate than the kind described on my tests pages. That's because the transducer is right next to the organs it is looking at, rather than having to penetrate skin, muscle and bone "on the way." Meds may mask symptoms (we hope!), but they do not mask the actual physical damage to the heart muscle. Some tests are more precise and pick up on the damage better than others. The 2 tests described are both pretty good ones, so I wouldn't worry about skewed results. Although EF, blood pressure and pulse rate are affected by meds, as long as he is being tested and seen by a CHF specialist, the doc will take that into account.
     If he stops taking his heart meds, he will slide back into heart failure, if his heart has been permanently damaged. How quickly he would backslide is impossible to say. It depends on lots of factors. However, heart failure meds are generally taken for life, and stopping them can have deadly results in some cases. Please read this for some info on this. Exercise is good, running himself into the ground is bad. He will have to discover his limits as he goes. My advice is for him to do the things he enjoys but to cut them a bit short for now and see how he feels several days later without doing too much activity in the meantime. Several days in a row of high activity is not advisable for now. The "fatigue hangover" usually catches up with us 2-3 days after we do too much. He'll get the hang of it. He is not restricted to bed and sofa! <g> I would encourage him to talk to his doctor in detail about activity levels and to enjoy himself as much as he can. Jon.

Jon's April 20 reply to Aubrey E's April 20, 2000 - Hi Aubrey, Have you read The Manual yet? Jon.

Charlie, April 20, 2000 - Hi everyone, It has been some time since I posted here I but read it weekly. My wife has CHF and is doing pretty good. Her EF went from 18 to 40, so we can't complain. Our main concern is memory loss. Hers is getting increasingly worse. She was tested by a psychiatrist for this and it was not promising. Her IQ was just 3 points from mildly retarded and although I sharply disagree, I have found out from her employer that she is forgetting even the simplest part of her job and if there is any change in the routine, she is messed up for the rest of the day. It has been 2 years since her memory loss was evaluated and we are going to do it again this year. It won't be much longer and she is going to have to quit her job. My question is, has anyone ever known of anyone getting Disability because of memory loss? I just thought I would ask.

Sherri, April 20, 2000 - Hi again, I am posting once more to say that I didn't mean to make things so difficult for Jon. I am a pretty smart person but when it comes to all this heart stuff, I am very ignorant. I did not mean for anyone to have to spell things out for the new people at this site. Maybe this just isn't the place for me. Please understand that when people don't know too much about this illness - this is all new to me - it is very easy to get confused. I am a pretty strong person also and I think I can deal with this on my own, along with reading through the posts. I will not be posting again but I think all of you are a great bunch of people, and I wish luck to every one of you. I will keep praying for you all, as well as my husband. This is a place of hope and Jon, what you are doing with this site is such a good thing I really hope I didn't make you doubt that! This site, I am sure, does and will help many people to educate themselves about this condition along with getting much needed support. Thanks for letting me say what I needed to say!

Jon's April 20 reply to Sherri's April 20, 2000 - Hi Sherri, I guess I'll make a list!

  1. You didn't make anything more difficult for me. If you want to see difficult, get Bill or Jack started, or mention religion to Tom S! And you completely missed the Milo days! ;-)
  2. This is not the place for everyone. It can be repetitive, boring, too slow or too busy, too spiritual or not spiritual enough, people butt heads, others prefer live chat, and on and on and on. But you have not given any reason why this isn't the place for you!
  3. If you're a strong person, prove it - stick around and participate. Help others who are new to the illness and to this site avoid the mistakes that caught you and me when you started reading. E-mail me the answers to those questions I asked so I can do better on my end.
  4. I would keep doing the site whether I thought it was being done really well or not. That wasn't always true. However, I have learned that if one person is helped, it is worth my effort. Besides, I'm too pig-headed stubborn and willful to let one person change my mind on anything! Right, brother Al?! <g>

     While I am on the subject of Al the H-man (you listening, buddy?), I want to point out that in a recent study rating the individual US states as desirable places to live, Louisiana ranked 47th of 50. Hey Al, you Cajun boys are gunna have to mellow out, son - you're scaring the tourists! <lol> Sherri, don't be a stranger. It would be a more boring place without you. Jon.

Karen D's April 20 reply to Laura's April 20, 2000 - Dear Laura, We will be praying for you and for your husband. When you said that the doctors have contacted Shands to no avail, does that mean that they won't consider him for their transplant program or that they won't set up a consultation at all? Have you tried talking to someone at Shands yourself? From what you said, your husband must be at home and not in the hospital right now. What meds is he on? Is his doctor a CHF specialist? This must be very hard on you and your husband. I don't know enough to give you any advice, but just to tell you that I care. Karen.

Cheryl T's April 20 reply to Jon's April 20, 2000 - Hi, Thanks for the info. Jim has another question. He takes Monopril. He breaks the pill in half and takes ½ in the morning and ½ in the evening. This helps with the fatigue Monopril seems to cause. The one thing he is having trouble with is the indigestion and heartburn he is sure the Monopril is causing. Do you have any hints for combating this? Is it common with this med? My fear is that it's not really indigestion but his heart itself. Could that be? Am I getting paranoid? :-)

Karen P, April 21, 2000 - Hello, My husband is nearly 60. His last echo was in June of 1999 and showed his EF at 20%, with CHF and an enlarged heart. He's wasting away and his arms and shoulders are literally skin and bone, however his abdomen is full of so much water that he looks 9 months pregnant, really. He has been having something called pseudo-gout, which is very painful. The heart failure has caused kidney failure and we just learned that his kidneys are functioning at 9%. Before the kidney problem, he always asked for the water to be removed from his abdomen and the doctors said it was very dangerous and could cause an extreme drop in blood pressure, which would be fatal. Three weeks ago when we first learned of the kidney failure, the nephrologist said his heart was not strong enough for dialysis.
     We returned last week and he is now suggesting the abdominal type of dialysis because it is slower and places less stress on the heart. He would have to have a tube surgically implanted in his abdomen, wait about a month for that to heal, then begin this type of dialysis at home every 6 hours (about 30 minutes each time) every day. We are going to a dialysis orientation on Tuesday to learn more about that. We are going to insist on another echo and visit to his cardiologist to see what he recommends and ask that the cardiologist and the nephrologist consult and maybe include his internist.
     My question is, "If earlier in the game the doctors (more than one) refused to even consider trying to remove all this water from his abdomen because of the danger, how can they now want to stick a tube into the abdomen and take fluid out and in fact, have us do it at home, if it is so dangerous?" We realize that there is no other treatment available to him but he wonders if this is the way he wants to spend the rest of his time. The nephrologist says that if nothing is done, because of the very low kidney function, he will not be here in a year. We want to make an intelligent decision and wonder about the dangers and benefits of this abdominal vacuum! Any thoughts or experience out there? Thank you for being here when I have these meltdowns at 2 in the morning. Bless you all. Karen.

Connie B, April 21, 2000 - Hi Jon, I want to tell you how wonderful I think your site is. My husband was diagnosed with CHF in July of 1999 with an EF of 20%. It came on very fast and we discovered that a virus had attacked his heart. He was going down very fast and they were talking implant. He received a implantable defibrillator-pacemaker after bouts of low heart rhythm and then very fast heart rhythm. He is also on numerous medications. He never got a chance to understand what happened to him, which is very common for patients. After he got home from the hospital, I started researching CHF and found numerous sites. I would forward this information to him and he would go look at them. The only site that did not make him more nervous or scared was yours. He still goes back to it and reads the posts but won't post himself. He has told a few people about your site. Please keep up the good work. It is a place for people to come to talk about their loved ones and also a place for patients to come to talk and ask questions. I know my husband feels that at times I get tired of hearing the questions or the comments. Just keep up the good work.

Al H's April 21 reply to Sherri's April 20, 2000 - Hi Guys, First Sherri, I can certainly understand the concerns you and your husband have with his condition. The concerns with the young children, what is life going to bring on you, etc. I am going to make another suggestion but how can I know unless I suggest it? Have you read some of the personal bios? I need to update mine but now I am one who has learned to lived with this illness and I have not gotten worse. Madd Jack is another, so are Rick M and Lee Roush. Not all of us improve and some have died, but they are few. Last week I ask my doctor to take me off the active transplant search list. After 4 years and not getting any worse, I decided I would take my chances with this clicker. However, we decided if I did make a change for the worse he put me on the active list. After all, I am still a young man (pushing 53) and my family needs me.
     I am not an invalid and I do get joy from my life. My lovely wife and I (along with God's help) brought 2 chldren into this world. My daughter is getting married in November and my son finishes college next year. So you see, despite all the gloom news I have had in the past, I am one of the lucky ones and I am still around. The first time I was diagnosed with this condition was in 1986. What is this, year 2000? Pam and I will celebrate 30 years of marriage this July. The bottom line is that I decided when all this came down on me as if the sky was falling, I could look at the statistics and go wilth the favorable side or I could make my life miserable and all around me miserable. Most of the time I tried to go with the positive side and loads of quiet time with my prayer life and my Bible study. I could die in an hour but I am happy right now.
     With all this said Sherri, I am not trying to minimize your situation. This is one of the reasons this site exists: so we can help you understand our experiences and perhaps help you and your family cope with a bad situation. We really do care and understand and we will tell you how it has been for our own situation.
     As for living in Louisiana, Jon, some of us have to live here to take care of Tom and Susie Tourist. It is a great place for tourists. There is something for everyone. Opening next month is a new theme park just north of New Orleans. Hopefully when you read the next media study, we will be 46 out of 50. :-) Al H.

Jon's April 21 reply to Al H's April 21, 2000 - Yo Al, I kind of figured it was the nice folks down there like your wife and kids who try to keep your practical jokes and sense of humor under control so the tourists don't all run off! ;-) Jon.

Al H's April 22 reply to Cheryl T's April 20, 2000 - Hi Cheryl, I have found that if I take my monopril before bedtime I sleep better. Depending on the combination of monopril and any other mediciations I take, it makes me feel very tired. I really haven't had problems with indigestion or heart burn. Monopril has been on my list for nearly 2 years now. I hope this helps. Al H.

Erv, April 22, 2000 - Hi, My wife Judy just had a treadmill stress test on Friday that rates her ejection fraction at 56%. She had the same test 2 years ago at her first diagnosis and before Coreg, and had a 54%. During this time she has had 3 echocardiograms and had radically different results. I do not remember the exact numbers from the first two, but they were in line with the EF of 31% that the test gave her in mid-March. Our doctor is confused and frustrated. He is going to have a long and heated discussion with the people administering and reading the tests. I would love to get second opinions from other doctors but our insurance plan requires a doctor referral or it will not pay. Currently, the doctor is pushing to have the clinic readminister and read the test for free, so we can all get a better picture of the situation. I am wondering if anyone else has had similar experiences with these tests? Also, is this possibly indicative of a certain type of cardiomyopathy?

Jon's April 22 reply to Erv's April 22, 2000 - Hi Erv, Some quick questions: Who is reading the echos? Is Judy being treated by a CHF specialist? If so, is he reading these echos as well? An MD is not qualified to interpret echo results, nor is an internist. Even a regular cardiologist may get considerably different results than a CHF specialist, especially if unfamiliar with the patient. Can you give us dates and the actual test results (numbers) associated with each date, as well as who read them? Also, were they stress tests? If so, were they done with actual exercise or with a drug injection to mimic the efffects of exercise, like persantine or dobutamine?
     While a technician can give off the cuff results, my CHF doctor routinely interprets my echo results at least 10% different than some of the technicians, while he is in complete agreement with some of the other technicians who do the actual echo test. It's not a cut and dried interpretation. The skill and experience of the doctor and how well he knows the patient are critical to getting an accurate echo result for a CHFer. It's one of the many things that makes seeing a CHF specialist so important. Jon.

Ginger's April 22 reply to Sherri's April 20, 2000 - Hiya's, I am from the other side of the board. Sherri, like your husband, I have DCM but not CHF. When I first got diagnosed, everything I read on the web told me that in 3 to 5 years I would be dead; until I got here. I had never heard about CHF till reading this site. You're right, all of us with DCM do not have CHF But DCM is a progressive diesease and CHF is what happens if it progresses or we do not take care of ourselves, or just happen to get a bad bout with the flu. It can happen. Like you, I also thought that since I only have DCM and not CHF that I didn't belong here. Like your husband, I lead an almost normal life but the more I came here and the more I read, the more I realized that I am no different then these people, with the exception that I have been lucky enough to not go into CHF.
     It's situations like your husband's that can give people who are sicker then him and new people here hope. You can help them realize that we can get over a bout of CHF and lead near-normal lives. Your husband's situation can help inspire others. As for making things difficult for Jon, well he can handle it, trust me on that. <g> You posted your opinion and that is an okay thing. I'm glad your husband is doing so well. Hugs, Ginger.

Karen D's April 22 reply to Al H's April 21, 2000 - Hi, Living only 10 miles from Disney World in central Florida, I just have to insert my fervent wishes that Tom and Susie Tourist will discover how neat Louisiana is, and soon! Karen D.

Deane M, April 22, 2000 - Hi, My mother has been diagnosed with CHF. She saw something on TV the other day about a new drug being developed to treat this disease. She missed the details and is unsure of the spelling of this new drug, but thought it sounded like parvenala. Have any of you heard of a new wonder drug?

Ken's April 23 reply to Cheryl T's April 20, 2000 - Hi Cheryl, My wife was diagnosed with Dilated Cardiomypoathy on April 9th. She first went into the hospital Thursday April 6th, after watching ER that night. How ironic! She started coughing really bad at first. We just thought it was cold-related and she told me to go back to sleep. She then came in and told me she was having a hard time breathing and we needed to go to the hospital. I knew it was serious then, because she never wants to go to the doctor for anything. She's stubborn.
     I didn't make it there. In fact, she passed out in the car and started turning blue, with fluid coming out of her mouth. Scary! Anyway, I stopped at the first gas station and had them call 911, then attempted to perform CPR on my wife. I'm glad I remembered it. She started breathing again and shortly, the paramedics arrived. What a night. She spent 5 days in the ICU. At first she looked like a computer with all those wires and the tubes down her mouth. It was a very hard weekend because thay didn't know what was wrong at first. Eventually she got better and they released her on Tuesday April 11th. She was very lucky, they said; another place or a longer drive, she might have died.
     She was off for 2 weeks and she will go back to work tomorrow. She's tired a lot but she was also tired before this.She doesn't smoke and drinks very rarely, and has always walked and been more healthy then me. A month ago she also found out she had Type 2 diabetes, so that hasn't helped. Like your husband, I wouldn't know that 2 weeks ago she almost died, except for her medicine. Her EF was 25% at the time. She watched how she ate before, but now she really is careful. She doesn't walk as far and as long as before but she walks almost every day. As we understand it, she is to have no alcohol. My wife is from Belgium where drinking wine with dinner or socially is normal, but not anymore. My wife is only 44. I am 33 we have been married almost 12 years, we have a 10 year old son and I have a 19 year old stepson with a wife and a baby on the way. This site has been great, as far as learning so much here and hearing stories about others' experiences. This all happened 2 weeks ago, so we are just newcomers to all this and hoping it all gets better over the next year. Yes, rest is important. Our doc said to rest whenever she feels tired so now she does not do much as before. Well,l to all who read this, I hope this might help in one way or another. Thanks, Ken.

Pat S, April 25, 2000 - Hi Jon, I need help. My husband has class 4 CHF and an EF of 12%. In February he was in the hospital in our area, wearing a monitor. The doctor said that there was a long long pause in his heart beat. He mentioned a pacemaker but did nothing about it. Since then I have found a cardiologist in New Orleans. On April 19 we went for an appointment. We took records but the doctor wanted the hospital records. When he got them, he called on April 21 and said my husband had to have a pacemaker. Since Friday he has been having BP of 60/30 and is weak. On Friday he was cold and clammy and I couldn't find a pulse. I'm a retired nurse so I can do the vitals. He will not go to the hospital up the bayou, which is 32 miles. We live on an island in Louisiana so the ambulance takes you to the nearest hospital. His medications are 0.125mg Lanoxin, 6,5mg Coreg, 5mg Zestril, 50mg Cozaar and 120mg Lasix daily. For arthritis he takes 15mg prednisone every other day and an enbrel injection on Thursday and Sunday.
     I guess I really needed to unload all of this on someone. I feel so helpless and I can see him going down and I can't help. Everyone please pray for him. His name is Cole. Jon, thank you so very much for this site. I have read everything on it many times. Thank you all for listening.

Emily, April 25, 2000 - Hi, Thank you for your site. My mom, who is 68, was just diagnosed with cardiomyopathy and an EF of 15-20%. She is not hooked online yet so I have taken it upon myself to become educated about CHF. Mom has many complications to her heart disease. She has a severe tricuspid valve regurgitation and a severe mitral valve reguritation. She has an enlarged heart with very poor left ventricular function. She has right coronary artery blockage and an 80% blockage under her bypass LAD done 17 years ago. It seems the surgeons and the cardiologist-primary care doctor contradict each other. The surgeons say she is operable and the others say she is inoperable. Mom really does not want surgery or angioplasty and the medications (Lasix, Aldactone, Zestril and a beta-blocker ) are making her feel better. The cardiologist has given her a 50-50 survival odds for this first year. I don't want her to die without exhausting all avenues but I don't know who to believe! Does anyone know anything about web tv? I am thinking that this might be a good way for her to enter the computer age.

Kat, April 25, 2000 - Hi, My companion has taken a little downward turn. I guess that it is sometimes to be expected. This has lasted over a week now and he complains of a dull pain in his chest and soreness in his left arm. I know that these are not to be ignored warning signs. I think he is trying to get in to see the doc today; about time. The one thing that is bothering me is that he is complaining about nausea. This doesn't seem right to me. My alcoholic ex had HF but it was the right-sided kind. Does anyone have a clue as to what is going on? Could this be more of an urgency then we think it is? He just completed 15 sessions of being monitored while on a treadmill and seemed to be doing fine. He works all day and puts in 12+ hours a day. He will not quit working (he would die) but has modified his walking and carrying objects. Do you have any ideas I could pass along to him on these latest symptoms? Thanks, Kat.

Jeanette's April 25 reply to Sherri's April 19, 2000 - Hi Sherri, Like your husband, I have DCM and CHF. I was in trouble and almost died because of the CHF. It is now under control because of the medication I take but If I don't remember to take my meds, then the CHF rears its ugly head and I fill with fluid and am back in the hospital on O2 and my heart gets even weaker than it already is. My EF is 20-25% and won't get better unless an act of God happens. I have had DCM for 2 years now and am stable, which means that all my symptoms are under control and I can function like normal but still can't work because of stress. I am not to get stressed out or my symptoms of CHF will return because my heart can't handle the pressures. If your husband is better and had no signs of CHF, it is probably because his meds are working and the CHF is under control, but don't let that fool you. If he were to not take his meds, he would be in serious trouble all over and this time much worse than before. I hope that this has helped. Jeanette.

Ginger, April 25, 2000 - Hi, I want to thank everyone here for their support and prayers during this hard time my family has been through. My brother came through his surgery and although it will mean a very different sort of life for him, the surgery did do what it was meant to do, which was to prolong his life. We do not have the pathology reports yet but I feel very optimistic about them. Thanks to you all and God, I refuse to dwell on the what if's and how many years, etc. Most of us got told 3 to 5 and we are still here! :-) I would not have made it through all I have the last few months without your support and prayers. So I had to thank all of you and this was the easiest way to do it! I love you all and keep every one of you in my prayers! Hugs, Ginger.

Erv's April 25 reply to Jon's April 22, 2000 - Hi Jon, I'll give you what information I have at this time to answer your questions. I don't know who is reading the echoes. No, Judy is not seeing a CHF specialist. Her doctor was trained as an electrophysiologist. He has an interest in the field and has been designated our regional clinic's CHF specialist. He does have regular access to a CHF specialist at our University hospital and works with him as needed. Judy's insurance coverage locks us into the regional clinic unless we get referrals. If we go elsewhere on our own, the insurance will not pay and since my insurance would not cover a transplant, we are reluctant to go over their head unless we feel it is absolutely necessary.
     Anyway, some rough dates on the tests. The first exercise stress test was done in July, 1998. Her EF was measured at either 53 or 54. In November she had her first echo and it had a an EF that was much lower than the stress test, so she was put on Coreg. In February, 1999, she had a second echo and it indicated about a 10% enlargement of her heart, so she had a catheterization to check for blocked arteries. The third echo was done in March of this year. It indicated a continued enlargement of the heart and an EF of 31%. She was then scheduled for the exercise stress test which was done last Friday. Her EF was measured as 56%. Sometime during this two year period, she also had a third type of test; I don't know when or its name. It had a score of 47%, but the doctor commented on Friday that it was generally considered to be the least accurate of the three. I hope this helps. Thanks for the time. Erv.

Jon's April 25 reply to Erv's April 25, 2000 - Hi Erv, I should mention that a new article I am preparing for the mailing list is a call by doctors for standardization in the way echoes are read, so it is a known issue in the medical community. Unless the same doctor reads all the echos for a patient, fluctuation is bound to happen, unless all doctors involved are experienced CHF specialists and are familiar with the patient. Stress echos may give quite different results than echos done at rest and that isn't a big surprise to those of us who actually have CHF. <g>
     Since you are getting the results of both at-rest and stress echos here, I'm not very surprised that there is some confusion. They are not going to be consistent. Also, since your wife mentioned a chemical tracer, I wonder if all the tests were actually echos or if one was a MUGA-type test, called radionuclide ventriculography. That would make a difference also.
     It would seem to me that right now, your best bet is to get the same doctor to obtain and read all the raw test data himself and calculate the EF from the raw data. That should clear it up. Echos are videotaped so the data is available for future reference. Jon.

Julie, April 25, 2000 - Hello, I was pleased to find this web site! My husband, age 38, was diagnosed with HF just yesterday. He has a long history of heart arrhythmia and had a cardiac ablation a couple of years ago to try to correct it. Well, his arrhythmia is back full force but the doctor cannot say whether the arrhythmia is responsible for his heart failure. It's amazing to me that my husband has developed this problem. He's always been very active and athletic and is an avid runner. All of this is very new to us and I'm pretty scared of what's ahead. I've been reading everything I can get my hands on. I'm glad that I've found a place where I can hopefully learn more (and vent when I have to). <g> I look forward to getting to know all of you!

Jamie S, April 26, 2000 - Hello, I am usually on the other side of the board but I come here because I am trying to help my Dad. He was found to have a pretty bad blockage, about 70% in an artery. He wouldn't give me specifics. He stopped taking his blood pressure meds and he doesn't take his 2 other heart meds either. One is a beta-blocker (Toprol). He only takes his reflux meds because he sees results with that.
     Anyway, I tried telling him that he should get the angioplasty and take his meds but he doesn't want to do either. I told him that if waits till he gets so sick and needs this stuff done on an emergency basis, he wouldn't be able to get up to the quality of life that he could have if he had the angioplasty now. I explained what the beta-blockers do and why they are good. He said he doesn't like the way the blood pressure meds make him feel. I told him to tell his doctor because there are others out there.
     Also, at the end of this exasperating talk, I told him to think of his best friend who died from a massive heart attack. He made the joke that Russ isn't paying taxes anymore. I said, "I don't think that is how is family is thinking of it." I told him that I have said my piece and he is the one who has to chose. It took him 3 years to listen to me about the funny looking mole on his head which turned out to be cancer, but it was able to be cut out. I hope he listens to me. Is there anything I can do? Any advice? Thanks in advance, Jamie.

Chris, April 26, 2000 - Hi, Nice site. Thanks for all your work in putting this together! I read The Manual and about a dozen CHF web sites, and can't find anything to help with my question. Can anyone help me understand the following? My mom is 68 and either doesn't understand or can't explain well what is going on with her health. Along with weight gain, she has had a chronic cough that has worsened severely in the past 6 months. She says her doctor is concerned about CHF and is sending her for a test (and here's the confusing part) where they will place a sensor in her stomach for 24 hours and monitor the fluid levels, something to do with acid reflux related to the coughing and CHF. It's very unclear to me. Has anyone had a similar experience and can you tell me how this stomach monitor relates or not to CHF? Thanks for the forum to ask such a question. God bless you all.

Marsha L, April 27, 2000 - Hello, This is my first post. My 79 year old mother had her first MI on March 20th and was recovering nicely. Then on Good Friday she was rushed to the hospital gasping for air with what the doctor called "flash" CHF. She also has been waiting a year to have an aneurysm operated on. It is now a size 5.1. There were no apparent signs of her CHF developing; no leg swelling, no coughing. Has this been anyone else's experience? I'm very scared for her. She is alone now and my dad suffered from CHF for 3 years before his heart gave out.

Bill D's April 27 reply to Jamie S' April 26, 2000 - Hi Jamie, If I were you I wouldn't urge your Dad to have an angioplasty. Angioplsties have a tendency to close up but the cardiologists don't dwell on that! I've had 4 or 5, with and without stents, and they all closed up - restenosed - within 6 months. One closed up before I got back to my room! There's an estimate that fully 50% of them close up within a year. Then all you have left to work with is the 70-80-90% blockage you had in the first place. I'm in favor of treating heart problems with medication. If it's not working, well then change the medicine. His doctor can't tell how he feels. Your Dad is the best judge of that. Maybe he needs another doctor? Bill D.

Al H's April 27 reply to Jamie S' April 26, 2000 - Hi Jamie, You know me! I am from the Other Side and sometimes we refer to it as the ZOOOO ( Anywho, we fathers can be stubborn people sometimes, despite how meddling our daughters can be. I know: just ask my daughter. The bottom line is that we fathers love our daughters. Despite this special love, sometimes we get scared and are afraid to do anything; such a common and stupid mistake. Things you could suggest to your father include:

  1. Yes, blood pressure medicines can make us feel very bad. I made a deal with myself. I take my medication every day except when there is something special to do with the family and I really wish to feel well. Then I skip it. No one should yell at me about this because it works for me
  2. If he has a computer, have him visit this board. Have him read some of the bios. Contact some of us to get our experiences and share with us. It helps to get one's mind set in the right way unless he runs into Bionic Rick and John - they have so many stores for him
  3. If he doesn't have a computer print some of the info out and show him how we do it
  4. If he only had one blocked artery perhaps a "stent" would work for him. This would be less invasive than a bypass. He should feel much better. I just had 4 stents put in last month. Yes, I feel much better but I am still battling the problem with my blood pressure
  5. The two of you should pray about this situation, together

     I hope this helps. See ya on the Other Side! Al H.

Chris, April 27, 2000 - Hi, I spoke with my mom again last night, and she is not really sure if this sensor will be placed in her stomach (measuring acid levels) or somewhere in her chest measuring fluid levels. She either doesn't understand what the doctor is telling her or she forgets easily. Anyway, she goes Monday for the test. Has anyone had experience with such a test? I'm sorry for the confusion. It's very frustrating to try to get information from her. :-)

Jon's April 27 reply to Chris' April 27, 2000 - Hi Chris, Maybe it's an echoardiogram, where a "transponder" is placed on the chest and abdomen to obtain ultrasound results. See this page for more info. Jon.

Gus R's April 27 reply to Jamie S' April 26, 2000 - Hi Jamie, I don't really have any advice for you regarding your Dad, but would like to say I think your views on the problem are very accurate. My mom refused bypass surgery because my dad had no success with it. My views then were about like yours are now, but I had no luck convincing her and to be honest, I'm not sure I tried as hard as I might have. Two years down the road she had a heart attack and it became apparent that she would never leave the hospital without surgery, but now had a damaged heart and the chances of success were down. She said, "Fine, I'll have the surgery now and I'll die, and it will be over." She did, and did, and it was.
     I went through some, should have and might have scenarios in my head later, but think I did all I could to help her and had to respect her decisions. And she might have been right. She had 2 pretty good years between when the surgery was advised and when she had it, whereas my dad did as his dox suggested and only had 2 miserable weeks. You face the same thing but are more aware of the consequences than I was. In the end though, one just has to do the best they can at making sure the loved one understands the situation and then has to let go and live with the results. Best wishes, Gus R.

Chris' April 27 reply to Jon's April 27, 2000 - Hi Jon, Thanks but that's not it. It is going to be placed inside of her (somewhere) via a wire inserted into her nose and downward. Her doctor said she had classic symptoms of CHF, but maybe this test is to rule something else out? I would think it would be more important to do diagnostic tests for CHF if that is suspected, but what do I know? Thanks for the help, Chris.

Bill D's April 29 reply to Marsha's April 27, 2000 - Hi Marsha, I don't know what "flash CHF" is either but I have a feeling I'd rather have it than the regular stuff. "Flash" sounds as if it will go away or is intermittent! Back in 1994 I read that the average bear who had CHF lived only 2 years! I made the great mistake of telling my neighbor that I was dying. Here it is 2000 and my neighbor seems impatient! <g> It's useless to tell him they increased the average to 5 years. I'm sort of glad we're moving away. Bill D.

Jamie S' April 29 reply to Gus R's April 26, 2000 - Thank you Gus for sharing your experience. You did what you could and I have to know that I did the same. He is an adult and now he has information and hopefully he uses it. Thanks again, Gus. Be well, Jamie.

Kathryn's April 29 reply to Chris' April 27, 2000 - Hi Chris, I doubt that this is a possibility but my son had a catheter (Swan-Ganz) inserted into an artery in his neck and run into his heart to measure the pressure inside his heart. This was done in the CCU in the hospital. I don't believe this can be done as an outpatient procedure. I doubt this is what they will be doing to your Mom and certainly not through the nose or mouth. Can you call her doctor and ask what they are going to do? That would at least give you the true picture.>

Ruthie A's April 30 reply to Bill D's April 29, 2000 - Hi Bill, I have had problems with "flash" pulmonary edema from heart failure. The "flash" part is not that it is intermittent but that it comes on very suddenly with no warning. In other words, I was just fine one minute and the next my lungs were full of fluid and I was gasping for air. It is mighty scary and can be dangerous if not treated immediately. No, you don't want "flash" anything!
     An update on my mother: She is still holding her own though her O2 has been increased to 4 liters per hour. She still suffers from shortness of breath even with the oxygen and is extremely swollen in her feet and legs. Her doctor keeps upping her Lasix but will not send her to the hospital for IV diuretics. This makes me mad but there is nothing I can do. I am amazed that mother has lasted this long but you never know with stubborn old women! <g> Ruthie A.

Jeanette's April 30 reply to Chris' April 27, 2000 - Hi Chris, Could it be an endoscopy that they are doing on your mom? My dad had one done and they put a tube and a little camera on the end of it down the throat to look into the stomach. Just a thought. Good luck and God bless, Jeanette.

Chris' April 30 reply to Kathryn's April 29, 2000 - Hi Kathryn, I'm going to take a day off tomorrow and travel to my mom's to bring her for this test. Hopefully, we can get some answers together. She is very timid about making sure she understands what is going on. She doesn't ask questions, and she gets easily confused.

Annie G's April 30 reply to Chris' April 27, 2000 - Hi Chris, Maybe it's a TEE, or trans-esophageal echocardiogram. I'm sure Jon has info somewhere on this huge site. She would swallow a probe type thing and it would do an echo from the back through the esophagus to the heart rather than on the front of the chest through to her heart.

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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