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

Jeff's 9-1 reply to Janet L's 8-22     that heart flopping sensation
Janet L 9-1     update on Dan, dehydration
Jon's 9-1 reply to Janet L's 9-1     stopping heart meds for a day or so
Karen 9-1     how do I care for an infant with CHF?
Debbie 9-2     what can I do for my brother?
Janet L's 9-2 reply to Jon's 9-1     low dose, will it hurt for a few days?
Jon's 9-2 reply to Janet L's 9-2     should be okay but I don't understand it
Sharyn 9-2     thought mom had asthma, but it's CHF - questions
Judy H 9-2     Coreg tip, experience, working versus EF, & more
Cheryl 9-2     questions about post-valve-surgery CHF problems
Ben B's 9-2 reply to Debbie's 9-2     drinking alcohol and CHF
Bill D's 9-2 reply to Sharyn's 9-2     heart valve regurgitation & CHF
Bill D's 9-2 reply to Debbie's 9-2     drinking and CHF
Holly's 9-2 reply to Cheryl's 9-2     coping with post-surgery troubles
Debbie's 9-4 reply to Ben B's 9-2     more info on my brother
Cheryl's 9-4 reply to Holly's 9-2     update, sleep really helps
Frank Smith's 9-4 reply to Debbie's 9-2     your brother's drinking
Cheryl 9-4     questions - zaroxolyn, low pulse & more
Jon's 9-4 reply to Cheryl's 9-4     zaroxolyn, calling your doc
Diane 9-4     mom's terrible hacking cough - questions
JP Unknown 9-5     husband distant, I need support & advice
Beverly C's 9-5 reply to JP's 9-5     coping with this diagnosis & more
Bill D's 9-5 reply to Diane's 9-4     doctors & pain, doctors being a pain
Diane's 9-6 reply to Bill D's 9-5     update & more
Penny 9-6     swelling & rash questions
Kathryn's 9-6 reply to JP's 9-5     coping
Gus R's 9-7 reply to Kathryn's 9-6     feeling guilty, taking care of yourself
Ellen's 9-7 reply to JP's 9-5     taking care of ourselves, coping & more
Kathryn 9-8     weight gain questions
Annie G 9-10     night sweat questions, update
Jeanette's 9-10 reply to Kathryn's 9-8     weight gain & CHF meds
Bill D's 9-10 reply to Kathryn's 9-8     calories count
Loretta 9-10     seek Washington DC CHF specialist
Hope McNeil's 9-10 reply to Penny's 9-6     drug reactions
Tim 9-10     wife with CM is very depressed - what to do?
Jan Hunt 9-10     questions about drooling & more
Jeanette's 9-10 reply to Annie's 9-10     night sweats
Jon's 9-10 reply to Kathryn's 9-8     weight gain possibilities
Bill D's 9-11 reply to Tim's 9-10     coping with CHF
Kathryn 9-11     thanks to everyone & more
Rich Crosier 9-11     Mended Hearts is good support group
Davida's 9-11 reply to Bill D's 8-26     update - good news! & more
Davida's 9-11 reply to JP's 9-5     coping & caregiving
Mike W's 9-11 reply to Tim's 9-10     depression after diagnosis & more
Davida's 9-11 reply to Tim's 9-10     coping and helping her cope
Michael H 9-13     aneurysm questions
Norma 9-13     questions about meds & confusion, prayer request & more
Tandy K 9-13     update on my young son Brandt
Maggie G 9-13     questions about BP, pulse, meds & more
Ellen 9-13     should Wayne really not drive? questions
Jon's 9-13 reply to Ellen's 9-13     questions to ask & more
Mike W's 9-14 reply to Maggie G's 9-13     he needs a different doctor
Karen D's 9-14 reply to Ellen's 9-13     arrhythmia possibility & more
Ben B's 9-14 reply to Ellen's 9-13     doctors and scare tactics
Bill D's 9-15 reply to Maggie G's 9-13     meds and doctors
Cheryl 9-15     why no diet pop?
Jon's 9-15 reply to Cheryl's 9-15     a suggestion
Davida's 9-15 reply to Maggie G's 9-13     a new doc is in order & more
Davida's 9-15 reply to Norma's 9-13     suggestions
Kat's 9-15 reply to Maggie G's 9-13     suggestions
Davida's 9-16 reply to Cheryl's 9-15     maybe carbonation has an effect
Cheryl's 9-16 reply to Jon's 9-15     edema, valve surgery recovery questions & more
Jennifer 9-17     intro, seek advice about my dad
Bill D's 9-17 reply to Cheryl's 9-16     our appointed time - great true story
Cheryl's 9-17 reply to Jon's 9-16     just hasn't worked out too well so far
Jon's 9-17 reply to Cheryl's 9-17     ideas, taking the longer view & more
Todd 9-18     why the change in dad's functional ability?
Jon's 9-18 reply to Todd's 9-18     were any tests done on heart function?
Sherry 9-18     update on mom & more
Renee's 9-191 reply to Sherry's 9-18     living with transplant & more
Bill D's 9-19 reply to Jennifer's 9-17     learning how to cope with CHF
Kat's 9-19 reply to Sherry's 9-18     that's great news!
Todd's 9-19 reply to Jon's 9-18     no tests done but I'll check
Kristy C 9-20     intro, it's a relief to find you all
Ronnie 9-20     desperate to help our son
Jon's 9-20 reply to Ronnie's 9-20     slow down a bit & more
Carol 9-20     can CHF be cured?
Jennifer's 9-20 reply to Bill D's 9-19     thanks, more questions, especially supplements
Jon's 9-20 reply to Jennifer's 9-20     he really needs a CHF doc
Kathryn's 9-20 reply to Ronnie's 9-20     coping with DCM in a young person
Darcie 9-20     worried about my dad
Jon's 9-20 reply to Darcie's 9-20     irregular heart beat
Kristy C's 9-20 reply to Jennifer's 9-20     second opinion is a good idea
Bill D's 9-20 reply to Jennifer's 9-20     doctors, supplements, BP cuffs & more
Laura 9-21     why does my husband feel so good?
Jon's 9-21 reply to Laura's 9-21     just enjoy
Barb L S' 9-21 reply to Tim's 9-10     support
Annie G's 9-21 reply to Jennifer's 9-17     finding docs, geography, low sodium diet & more
Claire's 9-23 reply to Tim's 9-10     coping with wife's illness
Todd K 9-23     what will make my dad feel better?
Sherry 9-23     how can this happen to my mom?
Wendy's 9-23 reply to Laura's 9-21     coping with sick spouse who seems well
Jennifer 9-23     we're home - update
Ben B's 9-25 reply to Wendy's 9-23     about not exercising,...
Kat H's 9-25 reply to Sherry's 9-23     lots of Lasix but no output
Roxanne Peters 9-25     seeking info & support
Tom B's 9-26 reply to Roxanne Peters' 9-25     road to transplant experience
Gus R's 9-27 reply to Roxanne Peters' 9-25     coping, finding info
Jon 9-27     moving
Jennifer 9-27     update, sodium, salt sub & sea salt questions
Jon's 9-27 reply to Jennifer's 9-27     sodium, salt subs, sea salt, recipes
Lee Braden 9-27     seek tips on portable oxygen use & more
Jon 9-30     update

Jeff's September 1 reply to Janet L's August 22, 2000 - Hi Janet, My heart flops for you. I have the feeling a lot of times, that my heart is flopping or I would call it thumping, in a weird way. I have been in the hospital enough lying there watching the monitor of my heart beat and I have had that feeling while watching the monitor. I called my nurses a lot of times about it and they called it palpitations. I have them all the time but the only time I really feel them is when I have 4 or 5 in a row. They did not seem too concerned with it but I'm not saying this is what your husband was having. I would notify your cardiologist and see what he thinks. Have a good day!

Janet L, September 1, 2000 - Hi, Dan's cardiologist thinks his recent symptoms (weakness, dizziness, sweating, low blood pressure) are due to dehydration. I didn't know he could be retaining fluid in his hands but still be dehydrated "in his pipes." He wants Dan to stop his heart meds for several days and he thinks he will do better. He will see him again in 2 weeks and if he's not better, he'll get "more aggressive" at that point. He has no idea why Dan feels like he has to force his breathing. That's the update. I hope the doctor is right.

Jon's September 1 reply to Janet L's September 1, 2000 - Hi Janet, Usually just the diuretic and potassium pills are stopped when a CHFer gets dehydrated. I hope Dan isn't stopping an ACE inhibitor or beta-blocker suddenly, even if just for a few days. Jon.

Karen, September 1, 2000 - Hi, My 2 month old son was just diagnosed with CHF. He has VSD and has a lot of blood in his lungs now. The pediatric cardioligist is talking about surgery. Any suggestions out there on how to care for an infant with heart failure?

Debbie, September 2, 2000 - Hi, I am hoping you can help me. My brother 45 has had CHF for 10 years now. The last 2 years he has looked really bad. In the last 6 weeks he has lost all muscle and looks like he has AIDS. I tried to talk to him about seeing a different doctor and he went nuts. I just found out that the doctor he is seeing is an internal medicine doctor, not even what he should be seeing. I do fear that he is in the last stages of heart failure. What advice can you give me, if any, on how I can help my brother. He will not talk to me anymore. His ankles are swollen and are very black, he has sores on his arms, his fingers are turning purple, he wakes up at night all the time, he does not eat hardly anything. He is an alcholic and still hangs at the bars. Does anyone know if this sounds like late stage heart failure. Do not be afraid to be honest. I need the truth. The meds that he is on are furosemide, accupril, spironalactone. Please give me any ideas. Debbie.

Janet L's September 2 reply to Jon's September 1, 2000 - Hi all, Jon, Dan's not on a beta-blocker because his blood pressure goes so low but the doc did stop his ACE inhibitor as well as his diuretic and potassium. His Vasotec dose was very low (2.5 mg) because of the blood pressure problem. Do you still think it might cause him a problem to stop it for several days?

Jon's September 2 reply to Janet L's September 2, 2000 - Hi Janet, It should be alright, although Dan will have to adjust to the Vasotec all over again. I never heard of stopping all heart meds as a remedy for anything, even temporarily. His ACE inhibitor should have nothing to do with dehydration, at least not directly. Jon.

Sharyn, September 2, 2000 - Hello everyone, I just found Jon's web site (thank you, Jon, for the incredible information). My mom was diagnosed with CHF Friday, September 1. I have suspected it for about a week myself, although she has been sick for several months. The docs all thought it was asthma but after several weeks of prednisone and no change, they figured it might be something else. The echocardiogram she had last week showed left ventricular dysfunction and severe mitral regurgitation. Her ejection fraction is 30-35%.
     I read about what the EF is and can figure it out, but what is mitral regurgitation? My mom said it means her mitral valve is leaking. If that's true, where does the leakage go? Her lungs are clear although she can't breathe. She can't really take more then a few steps without having to stop. She spends most of her day in bed because she has no other energy for anything and she isn't able to sleep at night. I was relieved to hear that this seems to be a problem for CHFers. This all began about 9 months ago when mom would wake up during the night gasping for air. That's initially why it was thought she had asthma. Incidentally, no one has pulled her off her asthma meds, not the pulmonologist, allergist or her internist. Her next step is to see a cardiologist and I will try to really urge her to see a specialist in heart failure.
     I just needed a place to vent. When mom first told me, I was relieved that we had an answer but didn't feel anything else. I was numb for a few hours, then it started to sink in. I need to be strong for her - I am the only child - but I am scared. My dad's mom died from CHF 11 years ago. She also had heart disease and diabetes. I am an insulin dependent diabetic myself and my dad is diabetic. It is thought that my mom has diabetes too. Does diabetes go hand in hand with CHF? Sharyn.

Judy H, September 2, 2000 - Hi, I haven't posted for awhile. My husband Bob - with DCM, ICD, 15-20% EF - is again trying a higher dosage of Coreg, at 6.25mg twice a day. It's been rough but he is sticking with it. He managed to slowly get his Prinivil up from 10mg a day to 40mg a day and that has made a big positive difference in how he feels. I wish the Coreg thing was that easy! Anyway, I called SmithKline Beecham to ask them about Coreg and to discuss the SOB my husband has to deal with when trying to increase the dose. They are going to file an adverse reaction report with the FDA, and they will follow up to see if this resolves for my husband. The number I called was 800-366-8900, ext. 5231. Just thought I'd pass this on.
     Jon, concerning EF and ability to work. When my husband was first diagnosed, his EF was 25-30% and he was functioning as class one. He was unrestricted as to activity and so he continued to work in a steel mill! I know what it's like because I worked there 12 years too, before I switched careers. In retrospect, that was the worst possible advice he could have been given! He's retired now, but some retirement! Why should someone work until they get too sick to work versus stopping working to preserve the health they have? Good luck to you. Judy H.

Cheryl, September 2, 2000 - Hi, My husband Jim, had aortic valve replacement surgery on 8/15/2000. The surgery itself was a success. The hope was that with blood flowing better, it would pump better but so far it hasn't. He's now back in heart failure. His symptoms were completely compensated prior to surgery but now he's short of breath, coughing and retaining fluid. When compensated, he was on digoxin, Lasix, Monopril and Coreg. He's now on Coumadin, Lasix, amiodarone (he has a-fib post -surgery), Monopril and Lopressor. Yesterday, they added an additional diuretic for 4 days and gave him a Lasix IV in addition to 100mg he already had yesterday. He's down a pound today. They cut his Lopressor in half. His heart isn't pumping the way it should and he is so discouraged.
     Has anyone else had these experiences after surgery? The surgeon said some of the muscle damage might reverse itself after the valve was replaced. That still may happen but it is sure hasn't yet. Are the CHF symptoms because of the surgery or because they changed the meds? They cut his lopressor dose in half yesterday because his heart rate was too low. If the heart rate goes higher, does that mean it is pumping better? What was making it pump better before, the digoxin? I guess they don't like to combine it with amiodarone.

Ben B's September 2 reply to Debbie's September 2, 2000 - Hi Debbie, You said to talk straight, so here goes. I'm sure you know there is probably not much you can do for your brother except pray for him and ask others to pray for him. You might also check out Al-Anon, because I believe the drinking is the more major problem here. I am not sure if he has end-stage disease or not (he probably has end-stage something), but as an ex-drunk I can tell you that he is killing himself with booze just as surely as putting a gun to his head. Alcohol is cardiotoxic. Anybody who has CHF and does not give up alcohol completely probably has a drinking problem and anybody who continues to drink large quantities of alcohol has a death wish. I'll pray for you as well, and best of luck.

Bill D's September 2 reply to Sharyn's September 2, 2000 - Hi Sharyn, All the valves in her heart are check valves. If they leak, the blood slips back past them into the chamber where it was pumped from. If she has severe mitral regurgitation, a new valve might help. CHF is a collection of symptoms when anybody's heart isn't pumping enough blood. Sometimes a new valve is all that's needed. As far as diabetes is concerned, many CHF patients have both heart problems and diabetes. Look here and here to see who they are. Bill D.

Bill D's September 2 reply to Debbie's September 2, 2000 - Hi Debbie, If your brother has had CHF for 10 years and still drinks, there's nothing you can do about it short of calling that doctor and telling him about it. When I went back to smoking, my cardiologist smelled it on my clothes. He told me if I didn't stop, I would have to find another cardiologist! Slam went the door and I knew he meant it, so I stopped. Maybe if his doctor told him that, he'd quit too. Bill D.

Holly's September 2 reply to Cheryl's September 2, 2000 - Hi Cheryl, Heart surgery is tremendously traumatic in every possible way. It takes months to recover fully. After 3 weeks Jim's just getting started but it really will get better! I had my mitral valve fixed and thought after all that fuss, surely my symptoms would go away and I'd be all better, rather like getting a broken bone set. Nope, after a few weeks I discovered I still had CHF and started on the interminable tune-up of CHF meds. It took close to a year for muscle function to come back but it did, gradually.
     The recovery business takes a huge dose of patience. The heart became accustomed over a long period of time to working with a bad valve and now has to relearn how to get along with a good one. This takes time. Doctors aren't much good at giving you definitive answers on "if" it will get better or "when," because they really don't know exactly. It depends on the individual. CHF symptoms may be due to still recovering from trauma of surgery and whatever muscle damage there is and the meds and heart adjusting to its new environment and the entire heart dynamics are just different than they were pre-surgery. About the only thing to do is go with the flow, report every symptom change to the doc so meds can be tweaked, and follow all the directions they give you, especially the walking and resting parts. That really helps with the discouragement. Good luck to both of you.

Debbie's September 4 reply to Ben B's September 2, 2000 - Hi Ben, Thanks for your response. We all know the main problem is his drinking. We have been dealing with that for so long now. His doctor even told him to stop or you will die a slow and painful death but even that didn't even help. I guess for me the problem is seeing his body waste away so rapidly in the last couple of weeks. He still gets around but with all his symptons, I don't think I can do any more. His doctor hates him. His doctor isn't even a cardiologist, which I just found out a few days ago. Because of his doctor not liking him and not pushing him to stop drinking, he does not see him on a regular basis. Thanks again and thank you for the prayers. Debbie.
Jon's note: Look up cardaiac cachexia

Cheryl's September 4 reply to Holly's September 2, 2000 - Holly, Thanks for your input. Sunday was a really good day. Jim was down a total of 7.5 lbs since Friday and we finally got a good night's sleep, the first since surgery. It's remarkable how much better your outlook is after a good night's sleep.

Frank Smith's September 4 reply to Debbie's September 2, 2000 - Dear Debbie, In my experienced opinion, I will go a little further than Bill and say that if your brother's doctor is not brain dead, he knows that your brother has an addiction problem. If he does know, he is "approving" of this deadly behavior, thereby enabling your brother to continue his madness. The doctor if he is worth his salt needs to tell your brother that he does not and cannot treat your brother's addiction problem. The only way it works is for your brother to bite the bullet and seek professional help from addiction specialists. However, if your brother does not want the help badly enough, then he will truly perish. May God bless you your brother and all those who suffer for whatever reason. Later, Frank Smith.

Cheryl, September 4, 2000 - Hi, Jim feels lousy today, tired with tightness in his chest. His pulse was down to 47 at one point. Should I call the doc or take him to ER? He just wants to sleep. I'm thinking maybe the extra fluid pill that gives Lasix a kick (zaroxolyn) has dried him out too much and we won't take it today. Input?

Jon's September 4 reply to Cheryl's September 4, 2000 - Hi Cheryl, I don't know if he needs to go to the ER or not, but you should always feel free to call your doc's answering service and ask him when he returns the call. Always. Zaroxolyn is not usually taken every day. Most doctors have a patient take it every second or third day. Jon.

Diane, September 4, 2000 - Hello, I'm the person from Sydney, Australia. I have not posted for a week or two, but my mother is now seriously ill with bronchitis. She suddenly developed a terrible hacking, congested cough a week last Sunday and the GP didn't want to give her anything but half an aspirin. By Tuesday she was very ill. The GP then gave her an antibiotic that was too strong for her and made her feel very nauseous, weaker and she lost all desire to eat. By the third day on these pills, she was worse so we went back to the GP and he said, "Oh, obviously it's too strong, I'll give her these." These second antibiotics seem to be better for her but by now of course her lungs were all congested. She has no sleep through coughing constantly. I just feel that these GPs know next to nothing or don't care too much. He keeps referring to her being elderly anyway and she has to expect that these things will happen now. I keep trying to bite my tongue because I don't want to aggravate him because he's the first decent doctor we've found locally but boy, does he have a negative attitude?! Anyway, I asked him if it was bronchitis and he said cryptically, "Maybe." Then he said as he was ushering us out the door, "Let's just say you won't reach 90!" Does anyone know if this sudden, terrible, hacking, cough could be part of CHF? She did have a dry cough now and again before, but nothing like this.

JP Unknown, September 5, 2000 - Hi, I am a frustrated, depressed caregiver. Are there any others out there? Sometimes I feel so all alone, it would be a comfort to know that someone else experiences some of the same situations.
     My husband has been on the heart transplant list waiting since March, 2000. He has had 3 heart attacks and 6 bypasses. He's a very sick man, but is still at home. Doctors want to use an LVAD to get him to transplant. So far he has declined, even though he feels terrible. We have to travel 6 hours by car to get to our transplant center. Transplant means relocation for us, which will be hard on kids aged 10 and 4. The more time progresses, the less interaction he chooses to have with me and the children, thus my frustration.
     I am having a hard time dealing with the lack of communication, affection, family participation, sharing in any way, household maintenance, etc. I am getting worn down doing it all and not having my partner's involvement in my life. It is like he has detached himself from us. He does not maintain good grooming, paces the house always miserable and I don't know how to reach him. I am worried that after transplant he will not come back to us. Does anyone have any ideas or thoughts? I can't imagine living like this another 6 months or so! I would like to hear from any pre-transplant or post-transplant caregivers.

Beverly C's September 5 reply to JP's September 5, 2000 - Hi JP, I regret to hear that you are having to live like this. He also is living in misery that I doubt he asked for. I became ill without any notice 9 months ago at age 53. My mother died from cancer and I saw her withdraw, so I noticed the symptoms of withdrawal in myself. Due to the ages of your children, he is probably very young to have to face his death. You did not mention if he is on antidepressants. I found that even on antidepressants, I began to withdraw from most everything, just sit and stare, all the things I had an opinion about in the past did not matter to me anymore. I was going to die anyway. It felt like I did not have the energy or interest to join in conversations. I now believe that I had to get through the grieving process for myself. The doc told me to get my affairs in order and I constantly seemed to have those details on my mind. One day I got up and went to the funeral home and made my arrangements. In fact, I got a much better deal setting it up in advance. I even went to 2 funeral homes and played each against the other to get a much better price.
     Following that, I found that my mind wasn't wandering while worrying about those details. I wrote everything down that I wanted to tell to everyone. All this seemed to relieve my mind. Little by little I have come back to having interest in some things on "this side." At one point I was breaking out in tears for no reason and my doc raised my antidepressant. This increase stopped the tears but threw me back into withdrawal from everything. They are designed to keep you from being unhappy but when you are overmedicated, it also keeps you from being happy about anything - with just no emotion at all.
     It may be that your husband could be under or over medicated on antidepressants. Do you have a good relationship with his doc? Tell them what is going on and perhaps they can help you. As far as him turning down the LVAD, after so many invasions to his body there can be things much worse than death. Cut him some slack and try to get some help for your depression too. I know it cannot be easy. Try to get him to tell you how he feels. Sincerely, Beverly C.

Bill D's September 5 reply to Diane's September 4, 2000 - Hi Diane, A woman took her 94 year old mother to the doctor. Mum was complaining that her left foot hurt. The doctor said, "You have to expect things like this when you get old."
     Mum said, "See? My right foot is 94 years old too but it doesn't hurt! I would think you would have something to help my left foot." The doctor realized his mistake and did something! <g>
     I don't know about the medical choices you have in Australia. If he's the best doctor you can find, I have to wonder what the rest are like. Many of us were misdiagnosed by our family doctors. They treated us for asthma or bronchitis for years until a cardiologist came along and told us what we had. I won't try and diagnose her long distance but she could have CHF. The last time I tried that, boy was I wrong! Bill D.

Diane's September 6 reply to Bill D's September 5, 2000 - Hi Bill, It's nice to talk to you again. No, she definitely has CHF alright but she's got this secondary infection of some kind, which seems like bronchitis. After reading Cheryl's note to me though, and now yours, I'm beginning to think it is just one of the many complications of CHF! You are so lucky in the US having all these CHF specialists. They are hopeless here, especially out in the sticks where we are. I don't know where all the decent GPs have gone; chasing the almighty dollar in the best suburbs, I think. We are left with a lot of migrant doctors working in medical centers who seem to disappear after a couple of visits, so when I say I've found a good one, I mean a good one relative to the area I'm living in. Anyway, you'll be relieved to hear we've moved Mum to my sister's, who lives in one of those affluent suburbs and she's found a fairly decent GP who has put her on Nebulum (it's a machine you fill with Ventilyn and breathe it in with a mask). It's made all the difference to her breathing.
     Jon, this board of yours is really great. It stops us all going crazy when we can talk to people who understand, even if they can't necessarily advise you what to do.

Penny, September 6, 2000 - Hi, My mom was diagnosed with CHF about a year ago. She is steadly going downhill, with lots of swelling in her legs and feet, and also in her stomach area. What's weird is that she has developed a rash on her upper body that looks like chicken pox. The hospital has isolated her because they don't know what it is! I was wondering if this is common in CHF. I would think if your kidneys and liver aren't working well you would be prone to odd skin rashes. If anyone has had this situation or has any ideas, let me know! Thanks.

Kathryn's September 6 reply to JP's September 5, 2000 - Hi JP, I'm sorry to hear the frustration and depression in your voice. I recognize the symptoms very well. My situation is the same, although slightly different, if that makes any sense. My son is the cardiac patient. He was 25 and healthy as a horse (we thought), then got his diagnosis of DCM and CHF. He had to move back home with mom. He was resentful, depressed, frustrated, rebellious, stubborn and scared; mostly scared, I think. Who at 26, or any age for that matter, wants to be told that they have a very serious condition like CHF. This is monumentally scary and confusing.
     Please get some counseling for yourself and if possible talk to your hubby and get counseling for him. I found that younger people under age 50 with CHF are kind of ignored by the cardiac community. At least it felt that way for us. We had difficulty finding a support group and when we finally did, my son was the youngest person in the room. Everyone thought I was the one with heart trouble.
     Anyway, do all the research you can, get some counseling, talk to the doctor about antidepressants, especially for your husband. Keep praying. Maintain the diet and exercise as allowed. Reading here and sharing here is a great way to learn more about CHF and the impacts we feel from it. As a caregiver, I can say from expierience that what you do to take care of yourself only enables you to take better care of your loved one. God bless you both, Kathryn.

Gus R's September 6 reply to Kathryn's September 6, 2000 - Hi Kathryn, The last two sentences of your post should be cut out and framed for all caregivers and loved ones. I've never decided whether the patient or their loved ones are the greater victims, but either way it's a low blow to all concerned. If anyone thinks your statement shows a lack of compassion, love or anything else, they should think again.
     In my preCHF life I was a volunteer fireman and still remember the first rule we were taught. Dead or injured firefighters do not help anyone, they just add to the problem. You caregivers and loved ones are in the same position. You must take care of yourself at all times, in all ways. It is very easy for some of us CHFers to be so wrapped up in our own problems that we are not aware of what we are doing to others, and there is always my favorite excuse for almost anything I do wrong: Hey, I can't help it, my dicky ticker just doesn't get enough blood to my brain. ;-)
     In case you've been too busy to read the posts on the other side lately, there's been an interesting and very upbeat thread on guilt. It's been almost unanimously decided that we CHFers don't have anything to feel guilty about and if that's true, then you folks on this side certainly don't either. Best wishes to all, Gus R.

Ellen's September 7 reply to JP's September 5, 2000 - Hi, Even though I don't post very often, I get a lot of support from this board. I agree with Kathryn 100%. You really need to take care of yourself. My husband was diagnosed 2 years ago with CHF and cardiomyopathy, and it has been a very rough 2 years. Finally all of us started seeing a psychologist, which has really helped. I felt the same way you do now: that I couldn't go on much longer. I give my husband as much support as I can but he needs to help himself.
     We as caregivers cannot make our loved ones act or do certain things unless they want to do it for themselves. I am living with a person I don't know anymore, because of his anger, frustration and depression. Since we started counseling (we go separately right now: my 16 year old son, my husband, and myself) I have noticed a big change in all of us. Wayne has not had any outbursts of anger for quite a few weeks and has started an exercise program. My next step is to start going back to church. I have been away from it for awhile but I know how important a church family can be. I keep hoping that Wayne will change his attitude and take care of himself but I realize that I cannot make him and I can't worry about it anymore. Both you and I need to take care of ourselves. God bless you and if you would like to e-mail me I would love to hear from you.

Kathryn, September 8, 2000 - Hi, I hope that you guys will have some insight for my son. His medication regime is:

  1. 12.5 mg Coreg twice a day
  2. 10 mg zestril twice a day
  3. 20 mg furosemide once in the AM
  4. 25 mg spirinolactone once in the PM
  5. 0.375 Lanoxin once a day in the AM
  6. 20 mg Celexa for depression once a day

He was changed from Captopril to Zestril about 3 months ago and since then has gained weight like crazy. As far as we have been able to figure out it isn't because of what he is eating. I suspect the Zestril might be the culprit and his cardiologist thought this might also be a possibility. We are stumped. Has anyone had a similar experience? I know that the Celexa can cause weight gain but he has been taking Celexa for over 7 months and the weight gain only showed up within the last 3 months. The doc says his heart is sounding good, his BP is great and he has no edema. He will be going for an echo in a month. Please let me know about the suspicious weight gain. Thanks, Kathryn.

Annie G, September 10, 2000 - Hi, I haven't posted for awhile. My husband and I were sharing the same e-mail account and it made it uncomfortable for both of us because my mail would get opened and if it dealt with CHF, it made him uncomfortable. Anyway, that's done now since I have my own e-mail. What freedom! I'm writing to ask for any ideas. My husband has been complaining recently about night sweats. Is this significant? He actually used to have them before he got sick but hasn't had them for about 2 years. He's had DCM since November of 1998. He's age 46, with an EF 13% on cath (echo says 20%). He goes for his yearly echo in a few weeks. He also has type 2 diabetes, diagnosed in February this year but he's been keeping it well under control except he won't eat breakfast. His blood sugars are good so I leave him alone about it.

Jeanette's September 10 reply to Kathryn's September 8, 2000 - Hi Kathryn, I am on Coreg, Zestril and Lasix too. In the beginning I did gain weight with the meds but now that I have been on them for over 2 years I see I have maintained my weight. I feel for me that at in the beginning the meds did it too but I learned to watch my eating and try to exercise. Now I have maintained my weight for some time. If he hasn't been on Zestril for a long time yet, he will eventually stop gaining the weight. He will even out. Just make sure he doesn't get sodium and he should be fine. Maybe if he can exercise, he should keep that going as well so he doesn't gain too much too fast. Just a thought for you. Take care and God bless. I am praying for you and your son, Jeanette W.

Bill D's September 10 reply to Kathryn's September 8, 2000 - Hi Kathryn, If it's not water, it's fat! Do you suppose he's getting candy or somthing you don't know about? There's not many calories in those meds. Bill D.

Loretta, September 10, 2000 - Hi, My husband's doctor is awful. He flunks all the tests that Jon suggests, from empathy to knowledge about CHF, although he's supposedly a heart specialist. My husband desparately needs a new one in the Washington DC area, preferably DC or close in Maryland, such as Silver Spring. If you can recommend someone, we'd be very grateful. Thank you.

Hope McNeil's September 10 reply to Penny's September 6, 2000 - Hi Penny, Look at the drug information on all the meds your mom is taking. Perhaps some of them list rash as a possible side effect. I have been taking a thiazide diuretic for a number of years. Sometimes I have mentioned to my doctor that I think it makes my tongue sore, which is a known side effect but he doesn't think so. However I was recently given Septra, a sulfa drug, and after a number of days broke out in a rash. The doctor switched meds and said I should never take a sulfa drug again. Then I read in a pill info book that people who are allergic to sulfa drugs should not take thiazide-type diuretics, as they are chemically related. It's a new point for me to bring up with my doctor. Hope.

Tim, September 10, 2000 - Hi, My 33 year old wife was diagnosed with CM one month ago. We have been together since high school and I am at a loss as to how to comfort her. She's had severe depression since her diagnosis and says the meds Coreg, Zestril and Lanoxin may be depressing her, aside from the sadness of diagnosis. I'm concerned when she crys that she's giving up and not thinking positive. Her doctor says positive thinking is key. Any suggestions on how to act or what to say to make her feel less scared? I am willing to do anything. Thanks.

Jan Hunt, September 10, 2000 - Hi, I can't believe I have found this amazing, comforting site. I'm in my 40s and divorced. I got sick with something else last spring that caused me to move in with my mother and father. Both were very active with full lives. In March, both had heart attacks the same day. Dad's was very, very bad. he blew a hole in his heart and was diagnosed with CHF. Within 3 weeks after coming home, he was back in the hospital. A good Christian man, always active and doing right things now can hardly walk from bed to den. After reading The Manual, I'm afraid he's in class 4 CHF.
     His doc is a cardiac surgeon and also will try to repair the hole in dad's heart and his valve problem. He couldn't repair the hole when doing a bypass following the heart attack because dad's heart tissue was like "wet kleenex." We are going for a consult with a surgeon next week for the additional repair surgery but I'm afraid this extremely talented and very busy, "just do surgery, ma'am" kind of doc will make a diagnosis on observation of dad in his office, review of 2 hospital visits since bypass and strictly "clinical." Dad is having an incredible emotional problem. he is a very good man but seems to have lost everything overnight.
     One symptom bothering him that I didn't see in The Manual is that he has to carry a towel around that he constantly wipes his mouth with or puts saliva in. he says he feels like he is "drooling" and that his head is full of fluid. X-rays of sinuses don't support that. Has anyone experienced this?

Jeanette's September 10 reply to Annie's September 10, 2000 - Hi Annie, I get night sweats too. Sometimes it is part of DCM and our meds. Also, sleep apnea may cause them as well. Has he ever had trouble breathing or sleeping at night? I have DCM for over 2 years now and my cardiologist says it's just something you have to deal with. I hope this has helped you, Jeanette.

Jon's September 10 reply to Kathryn's September 8, 2000 - Hi Kathryn, Bill is right about one thing: It is soooo easy to over eat calorie-wise without realizing it when one's activity is limited. However, Coreg can cause weight gain and that should be investigated. Jon.

Bill D's September 11 reply to Tim's September 10, 2000 - Hi Tim, You could print out The Manual and give it to her to read. Here I am at age 70, and I have lived almost 7 years already. I've bored people to tears! Tell her that some of us have had this stuff for 20 years and are still going strong. Do you know what her EF is? Do you have any children to raise? Your life is about to change! Jon has all the information you need to get through it. Go to the Site Index and read, read, read. She should too! Bill D.

Kathryn, September 11, 2000 - Hi, Thank you for the replies. Bill, I think you may be right and my son is perhaps getting empty calories from sugar. Since he cannot eat the salt-laden foods he used to love, he has transferred to sweets. Since being discharged from the hospital a year ago he has gained 40 lbs. We all know that is bad news. I have tried to encourage him to exercise. He works a late shift at the local grocery store and doesn't get off work until 10:00 PM. We have been taking walks, 2 miles a night after 10:30 PM, but as winter comes on, that will change.
     We are moving from an apartment into a small house this month and I am having a treadmill set up in the basement. Hopefully he will get on that thang and walk daily. We are both overweight. Those fat genes are tightly woven into our DNA. I have been battling fat all my life but my son was skinny all through grade school and somewhat through high school. He got the traditional college weight gain (freshman year fat), then the CHF diagnosis at age 25. I think I would like him to see his primary care doc to check him for diabetes, which also runs in our family, along with a general health check up including cholesterol and triglycerides.
     As I said, his cardiologist says his heart is doing fine and he will be having an echo later this month so I am hanging on to that bit of good news. Hopefully, it will be validated by the echo. Thanks everyone for listening. I so appreciate being able to speak out here and have your support and encouragement. God bless you, Kathryn.

Rich Crosier, September 11, 2000 - Hi, I have read most of the letters and comments, and am not making any comments pro or con but as a heart patient with CHF, CABG x3 and an ICD, I would like to recommend to anyone - patient, caregiver or family member - to contact The Mended Hearts. This is a support group for patients, family and caregivers. While I was having bouts of depression and was ready to pack it in, a friend suggested calling them. I called at 11:00 PM and the president of the local chapter spoke to me for 2 hours. His help and support, as well as that of the group, were invaluable. If anyone would like information, contact me. Mended Hearts is an international organization.

Davida's September 11 reply to Bill D's August 26, 2000 - Jackpot! They took my husband off Coreg 3 weeks ago and he has been trance and seizure free for 2 weeks. They allowed him time to get the Coreg out of his system. I am not sure if his heart stopped because I am assuming since he was on the cardiac floor under telemetry monitoring, they would have caught it if his heart stopped. In one incident his heart rate dropped to 40 beats per minute. In another incident, it was 150 beats. They removed Coreg, which lowers heart rate and 3 days later under a trance his heart rate hit 150 beats so they gave him an anti-arrythmic med called amiodarone. So far, so good. God is great! Will everyone please share this web site with your other support groups and with your health care providers to spread the word that this is the best support for patients and caregivers. May I suggest we gather mentally on some occassion for a moment of silence for the blessings we have received. Take care everyone.

Davida's September 11 reply to J P's September 5, 2000 - Hi JP, My husband is 35 and was diagnosed in February with CHF after a virus attacked his heart. We have gone through quite a bit since getting married in November. We had just started our lives together so it is depressing for me but not as much as it is for Dan. I try to put myself in his shoes, as difficult as it is. He is stubborn also and although his numbers have improved enough that he no longer needs a transplant, he still can't go back to work and it is hurting his manhood big time. I try to appeal to his sense of survival and talk tough sometimes, reminding him he can choose to live or die. I also remind him how much I love him and how hard this is on me when he gives up and won't cooperate. We both have to cry sometimes.
     Maybe your husband needs a good cry. Please make some time for the both of you. Get away for a short weekend even if it's at a local hotel, and talk to him about your fears and concerns. You need to re-bond and it is not going to happen in your current environment, with kids, home and pressures. He can't help with chores anymore. He should be given the TLC and be allowed to grieve, as hard as it is.
     I am in your shoes but without the pressures of children. For you, pray and find some internal strength and peace. Do something special for yourself and remind yourself what a good wife and mother you have been. Print some of these posts from patients with similiar diagnoses and give them to him for private leisure reading. For us that know prayer changes things, we will pray for both of you.

Mike W's September 11 reply to Tim's September 10, 2000 - Hi Tim, I really understand how difficult this is for you as well as for your wife, but try to put yourself squarely in her place. I'm not in the least hinting that you have been less than loving and caring but for anyone, never mind someone 33 years old, to be told that you have a life threatening illness is devastating and overwhelming. Adjectives don't do it justice. I'm not a caregiver but am a CHF patient myself, diagnosed at age 50. I had to go through a period of depression and grieving for myself.
     I think you're going to have to give her, say another month or 2 to adjust to this new reality. She, like most of us, will come to know and feel that we haven't been handed an execution date. Again, I do know from other similar situations, how hard it is to care about someone deeply and seemingly not be able to help. If you can hang in there a while, knowing that you're doing everything you can for her, I think you'll see her emotional state get better. If by chance it doesn't, there is professional help and medications for depression.
     Lastly, like all caregivers, you must absolutely take care of yourself, both for her and your sake! Things will get better! Peace, Mike Wafkowski.

Davida's September 11 reply to Tim's September 10, 2000 - Hi Tim, Read my reply to JP. If you guys attend church together, appeal to her from the spiritual point and remind her of God's promises to provide. Comfort her and insist that she does not give up. Keep her mind busy with movies, dinner dates, laughter. Get her the "Chicken Soup - For The Surviving Soul." This book is filled with inspiration for tough times. It is filled with lots of short stories from people who faced life's most difficult challenges. I keep my books by my bedside and I am the caregiver. My 35 year old husband has CHF. You will find inner strength yourself from stories. Good luck.

Michael H, September 13, 2000 - Hi Jon, I love this web site. It gives me a good support system for my role as a caregiver. My friend has CHF and a left ventricle aneurysm as well. I haven't seen any discussion of aneurysm on the site. Is this so unusual? Michael.

Norma, September 13, 2000 - Hi, I just found this site by accident while looking for something on CHF. My 71 year old brother lives in Michigan and has been diagnosed with CHF. His wife does not share very much about what the doctors have told them about his condition. In February he had a defibrillator put in but his quality of life has not improved at all. As a matter of fact, it has gone downhill every since.
     He was in a weakened condition and could not keep food down, which caused him to only use a supplement similar to Ensure (his is for diabetics) which caused him to lose weight. He is now in a nursing home, supposedly for rehab, until he's strong enough to go home. My sister and I visited with him at the end of August and there seemed to be little improvement. My sister actually spoon fed him so that he would eat. Since our visit, when I talk with him he sounds weak and confused.
     Is this long term weakness and confusion part of CHF? Originally they were told that his medication was the cause of his not being able to keep food on his stomach. I don't know what meds he's taking. How long does it take to bounce back or does it depend on the individual? Please pray for my brother and his family.

Tandy K, September 13, 2000 - Hi everyone, Brandt, my 2½ year old son, had a cath 9/16. They were checking for the possibility that his coronary arteries were incorrectly attached. They are fine, unfortunately, so we are stuck with the diagnosis of idiopathic DCM and CHF. A couple of good things from the cath results, though: While his heart is still quite enlarged, it compensates well. His EF is near normal at 50% and his fractional shortening is much improved at 25%. His heart rate while sedated ran about 110-120. When he woke up and got irritated with us for not letting him up, it was anywhere from 180-200. I would hate to see what a full blown tantrum does! His Lasix was decreased to twice a day, which will hopefully allow him to be potty trained. He continues to amaze me. Thanks for being here and letting me share. Tandy.

Maggie G, September 13, 2000 - Hi, My friend is 74 and developed CHF in December of 1999 when he came down with the flu and pneumonia. His history includes open heart surgery in 1984, on no medication till about 1996 when he was started on Zestril for high BP and Pravachol for cholesterol control. After his episode of CHF in December, he was placed on Lasix and potassium. These meds were both stopped when his CHF subsided. The next part is what confuses me.
     In April he developed a rapid pulse (90-95 resting) and low blood pressure (105/60) without any symptoms like dizziness. He stopped the Zestril to see if it would bring his pressure back up and get his pulse down but nothing changed. He consulted his MD, who didn't seem concerned about the rapid pulse and didn't see any need to restart the Zestril. In fact, his MD said he didn't have any idea what was going on. All blood work was normal. He still has occasional swelling of his ankles, for which he'll take Lasix and potassium. Doesn't someone with CHF usually have hypertension? Was it wrong to stop the Zestril? I can't shake the feeling something's wrong. I would appreciate hearing if anyone has run across this before.

Ellen, September 13, 2000 - Hi Jon and everyone, I have a question and I hope I don't sound stupid. Ever since my husband Wayne, was diagnosed with CHF and ICM, we have been told that he should not be driving because he is at risk of sudden cardiac death. They told us this 1½ years ago. We know of other people with this condition who have never been told they should not drive, one of whom goes to the same doctor. When I brought this topic up at a doctor's appointment, they said Wayne is taking a risk when he drives.
     He has an appointment this coming Friday and I would really like to know why they feel so strongly about this, but am not sure exactly what to ask. We live about an hour from our CHF doctor and the last time Wayne went there alone, they asked who was with him and when he said he was there by himself, they said, wouldn't his family feel terrible if he were to hit a schoolbus full of kids. It's been a year and a half, he appears able to handle it but every time he has an appointment I schedule time off work and sometimes it is a whole day. I sure don't mind if it means being safe rather than sorry but I have never had to do the driving. Has anyone else ever been told they should not drive? What exactly should I ask the doctor about this topic? I sure appreciate any input. Thanks.

Jon's September 13 reply to Ellen's September 13, 2000 - Hi Ellen, CHFers are at considerably higher risk for SCD (Sudden Cardiac Death) than the general population, about 8-9 times higher risk. However, even at that, the "typical" CHFer is not at high enough risk to limit driving. In general, CHFers in class 3-4 CHF are at higher risk for SCD than class 1-2 CHFers. Those with arrhythmias are at much higher risk than other CHFers. My concern is that this doctor may have noted an irregular heart rhythm in your husband and not told you guys about it. That would be highly unethical but it happens. I would ask:

  1. Does Wayne have an arrhythmia? If yes,
  2. If no arrhythmia, does the doc give all his CHF patients this non-driving advice?
  3. If yes, can we have printed literature explaining why in detail?
  4. If not, specifically why is Wayne at higher risk than other CHFers?
  5. What treatments will be started or tests given immediately to eliminate as much SCD risk as possible for Wayne?
  6. Why were these tests or treatments not started sooner?

You get the drift. Each question really depends on the previous answer by the doctor. Now, mind you, if there is a valid reason that Wayne is at high risk of SCD, he should not drive! Of course. By the way, the only stupid questions are the ones you don't ask. ;-) Jon.

Mike W's September 14 reply to Maggie G's September 13, 2000 - Hi Maggie, I'm no MD but I feel justified in saying that the medical treatment your friend is receving is obscene! Open heart surgery to me implies CAD (Coronary Artery Disease) and to have no medications since his surgery 'til 1996 is, well, insane in my opinion. I do believe the first thing your friend has to do is get another doctor or at least a second opinion and take a more active role in his own treatment. It is not exactly kosher to decide to stop your medications on your own when you are suffering from life threatening conditions. It sounds to me that your feeling is correct. It sounds like everything is wrong in your friend's situation. Peace, Mike Wafkowski.

Karen D's September 14 reply to Ellen's September 13, 2000 - Hi Ellen, When my husband Bill, was diagnosed 2 years ago, we also were told that he was at risk of sudden cardiac death. After an EP study, his doctors implanted an ICD and he wasn't allowed to drive for awhile after that; I think it was 6 months. His ICD has never fired but it's there just in case. If Wayne does have a serious arrhythmia that has not been tested or treated, then please do what Jon suggested and go to another doctor. Please let us know what you find out from his doctors. Karen.

Ben B's September 14 reply to Ellen's September 13, 2000 - Hi, I am probably the only person I know who had an EP study which was negative, and didn't get an ICD. My doctor has told me it is okay to drive. This doesn't stop me from worrying about it, so I limit my driving as much as possible. I think anyone with a serious illness should probably do that. However, I do drive. Everything Jon says is true. You need to press your doctor for answers, tests, etc. All that said, I have to comment on the "bus of children" scare tactic employed by your doctor. This is all too typical of a lot of physicians who want to treat their patients like children. The chance of an accident due to SCD are a combination of your predeliction to SCD and the amount of time driving. A truck driver with 1/100th the risk of SCD but who drives 100 times more has the same risk as a CHF patient. Nobody tells truckers they are at dangerous risk of killing children but they think it is okay to tell people with heart disease this. You'd have to be in your car, hit someone, and that someone would have to be a schoolbus. The odds against this are astronomical. Sometimes I think doctors like to use statistics but have no idea how they work or where they come from.

Bill D's September 15 reply to Maggie G's September 13, 2000 - Hi Maggie, I agree with Mike. Is he still going to a cardiologist or did the MD you refer to, take over his treatment? He needs to see a cardiologist who's a CHF specialist. The Zestril, (an ACE Inhibitor), is the first line of defense for CHF patients and shouldn't have been stopped. I'm not a doctor either but if you go to The Manual, you'll see for yourself! Bill D.

Cheryl, September 15, 2000 - Hi, Jim is retaining fluid again. He's up 3 lbs in the last 2 days and is coughing. Today the doctor said no more diet pop! I was surpised since its only 2% sodium or about 40mg a can. They said water or tea. Any comments on this?

Jon's September 15 reply to Cheryl's September 15, 2000 - Hi Cheryl, They're lucky they didn't lay a lame line like that on me! Their head would still be ringing! <g> Tell them you want things explained each time they make a treatment change of any kind, including diet changes. If they do not like this, remind them that it is your duty as a patient to understand your treatment so you can be a willing and useful participant in that treament. Remind them that it is also their duty as doctors to provide this information to empower their patients to be wise about their illness and lifestyle. In other words, BS them right back until they explain. ;-)
     I must add though, that an answer like this from a doctor to a real medical problem such as a CHFer's edema is troubling. If they don't know why, they should say so. Doctors who invent reasons for symptoms they do not understand will eventually harm a patient through being too proud to admit they need help treating that patient. Jon.

Davida's September 15 reply to Maggie G's September 13, 2000 - Hi Maggie, I agree with Mike W. This sounds so crazy and dangerous. Is your friend seeing a cardiologist and not just an internist or general practictioner? It sounds like he is in the early stages of CHF: rapid heart rate and swelling. Lasix is not enough; That's for fluid retention but there are many medications out there to help the heart pump more efficiently. What doctor would give a heart patient with CHF only Lasix? Get him to a new doctor and it must be a CHF specialist. Good luck.

Davida's September 15 reply to Norma's September 13, 2000 - Hi Norma, I am sorry to hear about your brother. CHF affects people differently but I get the feeling that something else is going on besides CHF. I can't stress that enough. Those symptoms are possible, but if he is there for rehab, it doesn't sound like he is participating in his rehabilitation. You may have to think this one through and talk to your sister-in-law and ask questions that require a detailed response. If she isn't able to answer to your satisfaction, ask her for permission to talk directly to his physician. If you are uncomfortable asking her for permission, you can try and call his physician directly and let him know of your brother's change in condition since coming to the nursing home. Maybe he can provide some insight as to your brother's anticipated progress. I will pray for him this evening. It's obvious you are very concerned. Keep us informed.

Kat's September 15 reply to Maggie G's September 13, 2000 - Hi Maggie, When a patient or caregiver is concerned and a doctor doesn't know what is going on but isn't concerned, then no one is doing anyone any good. Your friend needs and deserves a caring, informed specialist who will find out what is wrong and act accordingly. Sometimes a patient has to fight for that and sometimes the caregiver has to fight on the patient's behalf. Talk to your friend about seeking out a new doctor; Offer to help him to do so. Before accepting any doctor, make sure in advance that the doctor specializes in CHF or can refer your friend to someone who does. I say this because many medical clinics and insurers require a patient to be referred to a specialist but you need a doctor who will do what is necessary to get the best possible care. Don't give up, Kat.

Davida's September 15 reply to Cheryl's September 13, 2000 - Hi Cheryl, It's something about the carbonation. My sister is a Pepsi junkie and she retains fluid also. Could he be having too much, like more than one can a day? My husband stays away from soda unless it's one can every now and then. It's mostly juice or non-carbonated drinks like Hi-C or Kool Aid.

Cheryl's September 16 reply to Jon's September 15, 2000 - Hi Jon, Thanks for your input. The doctor just said it's unnecessary sodium that he doesn't need. He did add zaroxlyn again for a couple of days. Jim was down the 3 lbs the next day even before adding the zaroxlyn. Today he's down 5 more lbs with just one dose of zaroxlyn. The doc said they can't get him back on his old regimen of meds until he can get off the amiodarone. It's for the a-fib he had post-op. He's to take them until at least Tuesday. His pulse is low at 62 bpm, too. That was after a walk. He may do better after he gets off that and back on digoxin. They don't want him taking both at the same time. The doc is still worried about a-fib.
     Another question for everyone. Does anybody out there with CHF have valve surgery? How long has your recovery period been? It seems Jim should be doing more. He takes his daily walks as directed but the rest of the time he sits in a chair. It seems to me that he won't get his strength back sitting almost all the time. I'm frustrated and having a pity party for one today! He's depressed because he's not feeling more energetic and I'm frustrated because I can't get him out of the chair.
     On other sites I see where others with valve operations are up and going by now, but I realize that most of them didn't have CHF. Their valve disease was caught earlier. I want to encourage him to be more active but I'm just not sure. He thinks I'm being a mean old nag. I have tried never to push him to do anything. He's done nothing around the house since he got sick but he did work full-time from April through August 11, then had the surgery.
     Since his diagnosis in February, our lives have revolved totally around CHF. He only thinks of himself these days and I'm really tired, lonesome and frustrated. Thanks for letting me vent! Maybe it's just that it is the first beautiful fall weekend in New Orleans, my son and I wanted to go camping, and Jim didn't want to do anything! I don't think I should go off and leave him, but I'm making us all miserable by feeling so frustrated!
Jon's note: He blamed the 3 lbs on that 40mg sodium per can?

Jennifer, September 17, 2000 - Hi, This is all very new for me but from what I see, this site is terrific! Anyway, my 66 year old dad had a massive heart attack on August 13 of this year. I called the ambulance and took him to the nearest town for treatment. I did not even know that he was having a heart attack at the time. He had no complaints of chest pains, he was just very short of air and sweating. At the hospital they said it didn't look good for him and gave him only a few days to live maximum. We chose to send him to another city where there were specialists who might be able to help him. In the course of 2 weeks, he went into cardiac arrest twice, once lasting 9 minutes! He had huge amounts of fluid around his lungs and plenty of swelling in his lower legs, 20 extra pounds.
     They tell us he has congestive heart failure and that only 20% of his heart is working. This will never change for him. He also had angioplasty and they discovered that 3 of his arteries were plugged, the lower left 100% blocked. They were able to clear 2 of the 3 arteries. At this time he is recovering at our local hospital and they plan on sending him home in a few days. Along with this he is also a diabetic and his insulin levels have been very high. I am 27 and live with him. I have taken a leave of absence to be with him but I am very scared. This is very serious stuff!
     Does anyone have any tips or suggestion for me regarding the recovery stage, what to expect, etc,... We live in northern Ontario, Canada, so there are not many specialists here. Are there some good heart doctors in the United States that would be able to help my dad out or is this just a waiting game? Any information that anyone can give me would be great. Also, his doctor has been telling him for over 2 years that he has asthma and he has been on several different puffers over the course of 2 years. This kind of medical advice makes me ill. Why do they not check into things better?

Bill D's September 17 reply to Cheryl's September 16, 2000 - Hi, My friend Ned had a valve replaced 9 years ago. It was a metal valve and he could hear it clicking. He thought each click was his last. Ned always wanted a BMW. He talked his wife into taking a mortgage on his paid-up house to buy a BMW convertible. He also took his doctor's advice and enrolled in a rehab excercise class. Nine years later, he still goes to that rehab class 3 times a week. He feels great and is lot stronger than I am. The BMW 351i is about worn out! <g> Bill D.

Cheryl's September 17 reply to Jon's September 16, 2000 - Hi Jon, He blamed the fluid rentention on the fact his heart isn't pumping properly. It hasn't been since his valve surgery. Supposedly he has to get off the Cordarone before he can get back on the digoxin, which should help the pumping. If you have some other ideas, please share them with me. I guess I should note that this cardiologist did not recommend the surgery. The CHF doctors did.

Jon's September 17 reply to Cheryl's September 17, 2000 - Hiya Cheryl, I'm still trying to get over them even mentioning diet pop! <lol> Doncha just love it when one doctor says this and another doctor says that?! It really is pretty widely accepted among real CHF specialists that correcting a severe valve problem is a good idea for CHFers in general, since it can make long-term quality of life better. Any surgery on a CHFer is riskier than usual, though. You were caught between the proverbial rock and hard place and what can you do? Make your best guess and go.
     Has anyone mentioned intermittent inotrope therapy for the interim? Some inotropes can worsen arrhythmias but not all of them and not in every patient. They would certainly ease his symptoms while he waits out his time on amiodarone.
     You need to remember what a really brutal trauma even simple surgery is - even on healthy people. We tend to forget that because so many people have surgery. His heart is recovering from that trauma and because it was weaker than most to start with, it may take considerabely longer to "reset" itself to its previous state. However, because its actual mechanical state is now better than pre-surgery, the odds are that he will indeed recover over time and be better than before. Unfortunately, this will take time and patience, hope, and lots of good attitude on his part and yours. Hang in there. You're in this for the long haul and that's the way to view it in times both good and bad. As one of those patients who has already outlived his prognosis, I know of what I speak. ;-) Jon.

Todd, September 18, 2000 - Hello Everyone, My father has CHF and was doing well after a trip to Mayo Clinic last summer. He has a leaky valve but takes medication for it. The doctors at Mayo told him to start walking and he did. He got up to 2 miles a day without problems. About 2 months ago he noticed that his walks were becoming a struggle again and he got out of breath and his legs hurt so much he had to cut his walks short. His doctor cut his Coreg down to 3.25mg twice a day from 12.5mg to see how he felt. I saw him walk up a flight of stairs today and he could not make it to the top without resting and he did not used to have this problem. His regular doctor said his lungs are fine and his heart has not changed. What could be happening? He also has trouble sleeping at night and he thinks it is because he worries so much about his heart. I am pushing for him to go back to Mayo for a checkup. Any suggestions? Thank you again Jon, for your wonderful site. Todd.

Jon's September 18 reply to Todd's September 18, 2000 - Hi Todd, Did the "regular" doc do any heart function tests before pronouncing that your dad's heart was unchanged? Jon.

Sherry, September 18, 2000 - Hi Jon and everyone else, I have not written in a few weeks mainly because things have been quiet and work has been extremely busy. I have to report to everyone that another miracle has happened to my family. I have been writing for months now about how much my mother has been suffering, in and out of the hospital every 4 or 5 weeks along with pain and no sleep. Well, after her latest infection, which was urosepsis, she had completly stopped eating and we all thought the end was near.
     I have no idea what happened other than God answered my prayers again. My mom has made a complete turnaround to the point that she doesn't complain about pain, has no shortness of breath, eats like a horse, walks around the house with her walker doing laps and she sleeps most nights! Her mood has greatly improved and she has started reading magazines and watching television. She used to just sit there all day in a sort of zombie-like state. Needless to say, my dad, who spent 2 weeks in the psychiatric ward a few months ago, is much better as well. We have wonderful home care, which we pay for until all the Medicaid forms go through.
     The doctor said this past Friday that he has not seen her this well in years. She has been in end stage illness for so long that I really didn't think this was possible. He asked my mom what she was doing in his office and she answered, "I don't know. Sherry likes to make doctor's appointments for me." I have been extremely emotional about the whole thing and am scared to say how well things have been. It is going on about 5 weeks of this upward swing. I feel like I might jinx it all but then I remember that the people here who have supported me need to hear the good as well as the bad. Also, God works in strange ways and I think it would be alright with Him if I enjoy this for a while.
     On another note, I wrote a while back about meeting a wonderful man in the hospital in March who received a transplant in June. The update on him is great also. He experienced rejection twice and they changed around his meds but he is doing great and went home last week. His home is 7 hours from here. We stay in touch but I miss him, although he comes back next week for a biopsy. He does not have a computer but I tell him about this site all the time and he would like to write about his transplant experience. He also welcomes phone calls from anyone who is waiting for a transplant or an LVAD which he also had. If anyone is interested, you can contact me and I will give you his phone number. I am so grateful to have found this site and and I wish everyone all the best. Thanks so much, Sherry.

Renee's September 19 reply to Sherry's September 18, 2000 - Hi Sherrie, That is great news about your mother. Yes, God does answer prayer, especially when you are diligent with it. I'm also happy to hear about the guy you met who received a heart transplant. I'm also 5 years post-transplant and doing great. The rejection he experienced is usually expected early after transplant. I had the same experience and have been rejection-free since. I am doing great! You take care and God bless you. :-)

Bill D's September 19 reply to Jennifer's September 17, 2000 - Hi Jennifer, Welcome to Jon's Place! If you are only reading the messages posted on the forums, you are missing the most valuable part of Jon's site! At the top of each forum page, click on the words Site Index. You'll find Jon has a gold mine of answers to your questions. Start by reading The Manual. Then start burrowing into all the information Jon has collected on CHF, the diseases that cause it, what your dad can do about it, how to evaluate his doctor, questions to ask him and all sorts of things you should know! You'll probably find the 20% is his Ejection Fraction. That can change day by day. I started out at 17% six years ago and I'm up to 37% now. I'm even older than your dad is! <g> Bill D (Get him on the computer to meet us!).

Kat's September 19 reply to Sherry's September 18, 2000 - Hi Sherry, That's wonderful news! I realize I am new here and we haven't "met" but at the same time, I found your news joyous and uplifting. Keep your faith in the Lord and in yourself. Best wishes, Kat.

Todd's September 19 reply to Jon's September 18, 2000 - Hello Jon, I don't think that his regular doctor did any tests. I will speak with him to find out more. Thanks, Todd.

Kristy C, September 20, 2000 - Hi, I'm new here too. This site has given me the first sight of real positive possibilities (I can't think of any other way to say it) since my husband was diagnosed with cardiomyopathy a couple of months ago. He just turned 50 this last weekend. I guess you could say the bad thing about searching the Net and finding information is when you find so much that is primarily negative. The good thing is finding this site. Hearing about those who were diagnosed over 5 years ago and doing well is such a relief!
     After the catheterization the doc told him that the estimated 5 years would likely be less than that, but put him on Coreg and sent him to a heart failure program at Vanderbilt. His doc there added a new pain med (he is an above the knee amputee and adjusted his Coreg and Lasix. He had a bad reaction from the added Coreg and they dropped it back a little again. He's on 12.5mg twice a day.;-) About the possibly less than 5 years prognosis, he beat the odds before and it is comforting to know that there is a real possibility he could do so again.

Ronnie, September 20, 2000 - Hi, Our son desparately needs help! He is 14 years old with dilated cardiomyopathy. He has been listed out for a heart transplant and we are told he has less than 2 years to live. We are looking for alternative means to improve his heart function. Western medicine thus far has failed, although we have heard of a steroid treatment but cannot find out where it is available. We are using Chinese and Western herbal remedies as well as naturopathic medicine and acupuncture. We are considering the Batista procedure offered at the Cleveland Clinic. We have also used hand healers, faith healers, thought imagery and visualization techniques, but with no success so far.
     This is a sincere effort to save a boy's life. Hopefully those who respond will have only this same goal. Your prayers will also be appreciated. His name is Joey. Please help us save the life of this 14 year old child.

Jon's September 20 reply to Ronnie's September 20, 2000 - Hi Ronnie, Slow down, please. Beware steroids. They cause fluid retention, among other things not good for the cardiomyopathy patient. Please take the time to thoroughly research alternative treatments before rushing into them. That 2 year prognosis may or may not be valid. We don't know if it was given by a CHF specialist, a transplant cardiologist, an internist, an MD or what. We also do not know the underlying cause of your son's heart disease or the current state of his heart health, such as EF or Vo2max. We also do not know what coventional or experimental therapies have been tried or if you have refused any treatments, and if so, why.
     Please slow down and give us more info and maybe we can help. According to Dr. Patrick McCarthy - the expert cardio-thoracic surgeon on the Batista Procedure at the Cleveland Clinic - that procedure is only suitable for a very narrow range of CHF patients. Again, we need more info.
     I do not doubt your sincerity but sincere efforts can be misguided and cause harm as well as good. Slow down and give us far more information and we'll see if we can point you to possible treatments that may suit your son's specific needs. Rushing into many varied treatment efforts which fail is not fair to your son or yourself, since it may cause a roller coaster ride of hopes raised and then dashed. By the way, why would we have any goal other than helping? Take it easy, Ronnie.
     You are talking to a group of people who have usually been told they are about to die and are still here 5-10 years later. We are "veterans." As a veteran of dilated cardiomyopathy myself (about 6 years after a 2-5 year prognosis), I suggest you send us more info, read The Manual and then take a good long look at my other pages. We look forward to hearing more from you. Jon.

Carol, September 20, 2000 - Hi, My father is 83 years old and has been diagnosed with CHF after having pneumonia. Within the past month he has gone from being the caregiver of my mom, who has Alzheimer's, to not being able to care for himself. We are in the process of moving both my parents into our home and I have started looking for information on what I can do for my dad's discomfort. A question I have is, "Can CHF be cured?" Seeing he was fine before the pneumonia I wonder if given time, he can turn around again.

Jennifer's September 20 reply to Bill D's September 19, 2000 - Hi Bill, Thank you for writing back! I have been checking into all the information that is posted here and it helps me and my family to understand things a little better. About EF - they told us that it will never improve! I understood that once that part of your heart is dead, it is gone forever. Obviously this isn't the case. He is currently in our local hospital and could be coming home by Friday. They have been keeping him here due to his diabetes.
     I have been doing lots of research since I came home and did some checking. They had him on a med called metphormin and it could damage his heart if he took it. I approached the doctor several times and now finally they have taken him off it and put him on insulin. He is very unsteady on his feet and needs a walker. They say this might never come back but I have my doubts. He is a very determined man. I am also concerned with his blood pressure. Sometimes it goes really low - 70/46 one night - how can we watch this when he comes home? I asked the doctor about getting a machine for at home and he told me not to. I also brought in a list of the supplements that were posted here by Jon. His doctor also said not to bother. Are you on any of these supplements?
     If they seem to make a difference, I would like to get him on them, regardless of what his doctor says. Sometimes I wonder if they know what they are doing, but now that I have more info I am sure I will be challenging some of his judgements whether he likes it or not! This is not just another patient for me, this is my dad! Again, thanks for writing back, and when my dad gets home I will try and encourage him to come here. By the way, the doctors gave my dad 2 years to live and also told him that he could never drive again. Do you drive?

Jon's September 20 reply to Jennifer's September 20, 2000 - Hi Jennifer, I may make your post the "poster child" for why all CHFers need to be treated by a CHF specialist. <g> Jon.

Kathryn's September 20 reply to Ronnie's September 20, 2000 - Hi Ronnie, You have found the right place to get information; good information. My son is age 26 with dilated cardiomyopathy. We went to see a naturopathic doctor and got the same supplements that Jon lists on this site. My son's cardiologist looked down a bit on the naturopathic approach but she also said it doesn't hurt to try. So we have been doing the CoQ10, Taurine and Magnesium plus the other standard medications Coreg, Lasix, Zestril, digoxin and spironolactone. My son will go for another echo on the 29th of this month and we are hoping for good news. I also know of a 12 year old who had dilated cardiomyopathy where where I live who did not respond to any of the medications I mention above, who ultimately had to have a heart transplant but happily he is doing well after the transplant and is functioning fine with a new heart.
     Miracles do happen, but we must also take care to approach health care with a cautious and sure hand. Work with a good CHF specialist and follow your own intuition but be careful of trying too much too fast. Slow and steady is good. Prayer is great and God works in many miraculous ways. Please be careful. We all wish you the best. It is so traumatic to deal with such serious health issues in someone so young. You will be in my thoughts and prayers. God bless you and your son, Kathryn.

Darcie, September 20, 2000 - Hi everyone, I have never been on here but I have some concerns about my father, who has CHF and atrial fibrillation. He was diagnosed 3 years ago and has gone downhill since. I convinced him to go to another doctor, with whom he has an appointment Monday. He has had swelling in his feet, legs and stomach. Now he has fluid in his lungs, making it difficult for him to breathe. The doctor raised his fluid pill to 3 times the amount he was taking. My father is age 69 but has no other problems except his heart. They say he has an irregular heart beat so there is no more they can do. I am very scared that we are going to lose him. Thanks for listening, Darcie.

Jon's September 20 reply to Darcie's September 20, 2000 - Hi Darcie, Welcome to Jon's Place. If your father has an irregular heartbeat, there should be many options to help him. If his doctors are not offering him any of those options, he needs a new doctor very quickly. ICDs, pacemakers, anti-arrhythmic drugs, ablation and other options exist for almost all types of irregular heart beat. Please get him to see an "electrophysiologist." That's a cardiologist who specializes in problems with the heart's electrical system - which regulates heart beat. Also, see the ICDs page. Jon.

Kristy C's September 20 reply to Jennifer's September 20, 2000 - Hi Jennifer, The only advice I would give you - mostly because I'm still learning, it sure isn't because I'm bashful about giving advice <g> - is to get a second opinion! Get thee to a specialist, like Jon said. There might be more on the bulletin board for those who have CHF about those who had really low EFs that have come up tremendously, but I know I have gotten an e-mail response from someone who's EF was 10% and his has come up a bunch. If this is his primary care doc, I'd be checking into another one pronto.

Bill D's September 20 reply to Jennifer's September 20, 2000 - Hi Jennifer, Did you read all of The Manual? I know it's long but it's worth it! Everything Jon writes is long. <g> Maybe you should print it for your dad to read. Yes, when a portion of your heart is dead, it stays dead. The "dilate" in Dilated Cardiomyopathy is when your heart stretches to compensate for the dead part. As it happens, your dad's heart is trying to pump more blood. That's both the good part and the bad part of CHF. Unfortunately, the stretching goes on till your heart won't work anymore. My heart is 3 times as big as a normal heart but it took 7 years to get that way. Still, my EF is up to 36 from 17. Clear as mud? Maybe that's why Jon's explanations are so long. ;-)
     You refer to your Dad's doctor(s) as "they." Is your dad's doctor a CHF specialist? He should be, even if you have to change doctors. You can buy an automatic blood pressure machine at your local drug store for about $35. Be sure to measure around his arm first. The cuffs come in different sizes. I can't believe you doctor said to not buy one. I am on vitamin E, Centrum, Folic Acid, slow release potassium and CoQ10. I drive when Rosie won't. <g> Bill D.

Laura, September 21, 2000 - Hi everyone, First of all thanks to Jon for this site. It has given me hope for my husband. My 43 year old husband has been told he has "severe" DCM with CHF. My question is this: Everything I have read says that with severe it seems you have no place to go but down. He, on the other hand, is doing great! He is on lots of meds like everyone else but has no symptoms. His heart was quite enlarged and his EF was 27% by cath. The doctor said it looked more like 10-15% and that he would need a transplant within one to two years. If he is that bad, why is he doing so well? Thanks for input!

Jon's September 21 reply to Laura's September 21, 2000 - Hi Laura, I was diagnosed with severe CHF and an EF of 13% by cath. My heart was drastically enlarged and I was told I needed an "immediate" heart transplant. Within a week of starting meds, I felt fine and returned to a near-normal life for 1-2 years. I felt good, did yard work including trimming trees, grocery shopped, cooked for my family, did dishes and a lot of housework. and did woodworking for relaxation. However, as time went on, my weakened heart took its toll and now, although my EF is 40%, I am very tired all the time and do not feel well very often, if ever. So it goes.
     CHF is a progressive disease in most cases. He is currently enjoying the benefits of muscle tone gained while healthy and has not been slowed down by prolonged exposure to weakened blood circulation, nor have natural neurohormonal changes challenged his meds' protective effects yet. They may do so, over time. His best bet to keep feeling good is to strictly follow a low sodium diet, take those meds precisely as prescribed, exercise every day and stay optimisic - even on bad days when they happen. Take life one day at a time and enjoy it. Don't worry about what may be down the road, since it's down the road whether you worry or not. ;-). Jon.

Barb L S' September 21 reply to Tim's September 10, 2000 - Hi Tim, You are not alone in wanting to ease your wife's emotional, physical and spiritual pain. I also have CHF and have had many ups and downs. It's a roller coaster ride for everyone. Most of the time I feel it's much harder for the caregiver than the patient. I am just speaking about my situation now. However we do deal with our pain differently. I had never really been depressed and when I did become depressed it had been overwhelmingly expected by my doc, family and friends. My whole life had flipped. So why shouldn't I be depressed? In time, your wife will come to terms with her illness. Just being there, supporting her and letting her go through these emotions is enough. Someone here reminded me that I had the right to be depressed. So does your wife and so do you. Let her cry. She needs to. It's okay. It is one of the healthiest ways to deal with any kind of loss and this is a loss of health. She's scared and I think that you are too. However as much as you want to make things better, you can't. When she is ready, hopefully she will start to get involved in her own health care. Getting your own support system is good. Your life has been flipped too. I know for a fact that when I found out at 36 years of age how sick I had become I was scared. Ask her doc about any CHF meds to see if they are contributing. For me, the side effects started to get me tired and started bringing me down. Come back here and quietly get support. Everyone here is willing to give much needed support, care and love. Barb.

Annie G's September 21 reply to Jennifer's September 17, 2000 - Hi Jennifer, It can be very scary, especially when you don't know where to turn. I live in southern Ontario. In order to find a CHF specialist, you will probably need to travel to one of the heart transplant centers. I know they do transplants in Toronto, Ottawa and London. I know most of the readers wouldn't understand the geography, but just how north is north? Barrie or Thunder Bay, or further than that? It's possible that Minnesota may be closer for you but the health care costs are no joke. A 15 minute consultation with a cardiologist cost me $245 in Port Huron 2 years ago so stay in Canada if you can, unless the wait is too long. Initially my husband was given an appointment with a CHF cardiologist for 6 months down the road until he got so sick they thought he would need a transplant. Then they got him in right away. That's a hard way to get bumped up in line. We live in Sarnia, population 75,000, and there isn't even a cardiologist in this city. I can give you a list of low sodium products that I've found in our local grocery stores if you are interested. The low sodium diet can make a big difference. Also, is there a cardiologist in your city that will work long distance with a CHF specialist? Good luck, write if you wish. Annie G, spouse Steve, EF 20%, age 48.

Claire's September 23 reply to Tim's September 10, 2000 - Hi Tim, I didn't see your original post but I pieced together the general idea from the answers that followed it. I am a 38 year old woman with CM, CHF, angina and valve problems after a viral illness 3 years ago. When I was first diagnosed, I was terified as I'm sure we all were. I was convinced that I was going to die! My beautiful little girls were ages 2 and 4½. I would lie awake at night and cry because I thought I would never see them grow up. My husband used to lie awake at night to make sure I was still breathing! It's a very horrible and scary time right now but it truly does get better.
     You are your wife's biggest source of support right now and that's very taxing and difficult for you because you are scared too. Jon's place is the best place to come for real info, support, laughs and advice.You and your wife need to talk about your fears ands anxieties together, and with her doctors. Many of us are on, or have been on, antidepressants or anti-anxiety meds to help over the real rough spots.Such meds can sometimes be helpful. Arm yourselves with as much knowledge as possible. Trust in God and each other. Things will gradually become easier. Actually, since my diagnosis my hubby and I have learned to slow down, mellow out,enjoy our kids more, consider what really matters to us, and cherish each other more than ever. He is my hero, my knight in shining armor. I'm sure you are your wife's too! Sorry if this sounds corny, but it's just so true. I won't say I'm glad I have this disease - I'm not that dumb - but it sure has helped me appreciate what I have and boy, ami bleessed?! (and it sure ain't with money <lol>) Take care of yourselves and feel free to write or jutst vent. It's one of your survival tools right now! Peace and love, Claire.

Todd K, September 23, 2000 - Hello Jon, My dad is probably in end stage CHF and has has taken a turn for the worse in the past 2 months. His legs are giving him trouble when walking and he is out of breath more than in the past year. He is going back up to Mayo to be checked out. What can be done to bring his energy back up, if anything? Is it a change in meds? Exercise? Something surgical? What should he ask the doctors up there? I'm just looking for something positive that we can hope for. Thank you.

Sherry, September 23, 2000 - Hi, Well, I am glad that I shared my good news about mother here the other day but maybe I should have been a bit more humble. Two days ago my mother went into heart failure in literally hours. We went to the ER where they started administering IV Lasix and zaroxlyn. She was not responding to them. I have never seen her get so much IV diuretic and not start urinating like crazy. She finally did start putting out fluids and then I started to calm down. She is still in the hospital now, wiped out but getting better. What I do not understand is why she wasn't responding to the Lasix this time? Is it a sign that her kidneys are getting worse and worse from so many years of such high doses of Lasix?
     I also cannot understand how she can gain the fliuds so fast now. I mean literally within hours she filled up and could barely breathe. It was extremely scary. They told us that if she did not respond to the IV lasix and kept getting worse and worse then they would move her into ICU and start dobutamine. The doctor said though that she probably would never come home if that happened, which I also don't understand. From what I have read here, people are given intropic drugs and then still survive. If anyone knows anything about it, could they please let me know? Once again, this is not her time to go and God has blessed us with more time with her. I hopefully will take her home from the hospital Sunday or Monday. Thanks for listening and I hope everyone has a good weekend. Sherry.

Wendy's September 23 reply to Laura's September 21, 2000 - Hi Laura, I feel so much confusion, as you do. My husband has dilated cardiomyopathy due to Lyme Disease. He was first diagnosed as "moderate to severe" and now has been changed to "mild" cardiomyopathy. He is on Coreg. He is 36 years old and has never had any symptoms, other than the fatigue of meds. I often forget what the doctors say as I look at him and don't see much difference. The doctors do not want him to exercise for some reason since they are still hoping for healing. In turn, he has had some weight gain from meds and lack of exercise but this is the only noticeable difference. I forget about all this until his next test and then it hits me like a terrifying ton of bricks. Yet after each test, I feel stronger.
     The worst part for the healthy spouse, I believe, is that our fears can't be bounced off our best friend. Sometimes I wonder where I even get the strength to be the support system when I've always thought of myself as more of a weak person. I guess God has helped me with that. We are living our lives and as a matter of fact, going to Walt Disney World and on the Disney Cruise in less than 48 hours! He feels good and we're going to make some magical family memories this week. As Jon, said, you can't worry about what may be down the road because that does not change. I will however, enjoy every precious moment from now on. :-) Please e-mail me anytime and God bless. Wendy.

Jennifer, September 23, 2000 - Hi, It's Friday afternoon and we have been home for a few hours. Things seem to be going well so far and he is very happy to be home. I am too, but at the same time I am very scared. The nurses gave me a bit of a reality check yesterday with everything to watch for in him. I guess I always knew about them, but put it out of my mind. So I just wanted you all to know that we are home, safe and sound for the time being anyway! Take care and I hope everyone has a great weekend.

Ben B's September 25 reply to Wendy's September 23, 2000 - Hi, You need to find out why your husband's doctor doesn't want him to exercise. This is counter to everything I've heard about the latest CHF treatment guidelines. After 3 years - with a guy who has no symptoms - I can't see any reason why he shouldn't exercise. I don't see what this has to do with healing. As far as I'm concerned, I think it will help healing. You ought to find out the why of this one.

Kat H's September 25 reply to Sherry's September 23, 2000 - Dear Sherry, About 2½ years ago, my heart failed and landed me in the hospital. I had the same trouble with fluids. In fact, I hadn't put out fluids all that day. Even after I was in the hospital, it was another 12 hours after I was getting IV Lasix before my kidneys finally kicked in. My husband had the same question you do. Why? My doctor explained that the body shuts down functions like digestion and kidneys when the heart fails. This means the body continues to retain fluids and makes it even harder to keep the heart stabilized. The procedure is to start IV Lasix while also stabilizing heart function. The kidney(s) don't kick in immediately but they tend to do so fairly quickly so the Lasix is already there speeding up the process and further stabilizing the patient by reducing fluids. If that doesn't happen, the doctors may have to resort to a drug like dobutamine.
     What I read is that doctors usually wait for the kidney(s) to kick in on their own even though that can take time and so long as the heart remains relatively stable, they'd be reluctant to interfere. If my heart had begun to destabilize again, they would have used something stronger than Lasix to get the fluids off. Some doctors see having to resort to anything stronger as a bad sign although many people have needed it and bounced right back.
     I am glad your mother is home again. You might tell her what my husband told me. "Don't wait to tell me there might be a problem, even might." The sooner I tell someone, the easier it will be to set right. My prayers go with your family, Kat.

Roxanne Peters, September 25, 2000 - Hi, My name is Roxanne Peters and I live In New Jersey. My mother Jill was just diagnosed with dilated cardiomyopathy and I'm really educating myself to help her. We are extremely scared yet hopeful that we can get through this no matter what the outcome is. I found Jon's Place by way of searching. Thank you to the man upstairs for this site. As my mother's support person I'm looking for all info I can get and any support I can find. I seem to have found the place.
     We meet with the heart transplant team for her evaluation on October 11. I have no idea what is to come in this process. If anyone has any ideas or has been there, please let me know. My mother is 50 years old as of last Tuesday. I'm also looking for support groups for my children, the oldest being 9, then 6, then 5. We are new at this and new at learning what in the world this is. I am scared, yet have hope! Any suggestions that anyone has, please share with me. Thank you so much. Sincerely, Roxanne P.

Tom B's September 26 reply to Roxanne Peters' September 25, 2000 - Hi Roxanne, I'm your Mom's age and was diagnosed with DCM in April. Maybe my experience can be of help, but the biggest advice I can offer is to take one day at a time. Take small steps you can manage and don't yet worry about things 6-9 months down the road. There are too many positive things that can happen before then. I had an evaluation for heart transplant and my condition improved significantly between the time I was referred and when I actually saw the doctor. Is that why they make doctor appointments so far in advance? <g> As a result, I was not even entered into the running for a heart, which was fine by me. So just being scheduled for an evaluation does not mean your Mom will indeed need a new heart.
     The change in my condition did not just happen all by itself. I was put on medications and also had a pacemaker installed. My point is that there are lots of tools her doctor has available, and some of them work! Please, take a breath, read this site and pray for the best. Your mom is in a tough situation to be sure but these days, having a legitimate foundation for hope is more realistic than ever before. Best wishes to you all. We are all rooting for your family. Tom B.

Gus R's September 27 reply to Roxanne Peters' September 25, 2000 - Hi Roxanne, Educating yourself is the best thing you can do. The more you know, the better you can help guide your mother towards the best care possible. Your mother does have a serious problem, I'm not trying to kid you that it's not, but most of us do better than is predicted right after our first diagnosis. The best place to start your education is at Jon's Site Index. Start with "Coping With Heart Failure" and read what Jon has to say. That one little area has some great advice. Then go back to the Site Index and pick what sounds the best to you. The amount of information here has to be seen to be believed, and it really will help. Recipes might not sound very important, but the best dox and the best meds won't do much if one doesn't watch their diet, especially sodium intake. If there's anything you don't understand or can't find, ask about it here. With a little luck someone will read it who knows the answer. Best wishes, Gus R.

Jon, September 27, 2000 - Hi everyone, Sorry about slow posts, and me being hard to reach and so on. I am moving the site and although everything looks the same to you - I hope - it's driving me a little nuts. <g> Jon.

Jennifer, September 27, 2000 - Hi, Are there any salt substitutes that are good? I have checked into some and hopefully found one that is made from corn, and is supposed to be good. I am waiting for it to come in. Also someone told me sea salt is good to use also but I have my doubts. If anyone has any good subtitutes, please let me know. Recipes would be great too! Otherwise we are doing well. The medications aren't as confusing as I thought they would be. We went to the doctor yesterday and he said that he was doing well but all he did was check his blood pressure, heart rate and blood sugar level. So how he came to the conclusion that he is doing well is beyond me! Take care everyone and please write back with some ideas for me. Thanks again.

Jon's September 27 reply to Jennifer's September 27, 2000 - Hi Jennifer, Take a look around. Places to start are Kitchen Corner, the recipes page, and the Links page. Beware commercial salt substitutes that contain potassium chloride. Sea salt is salt is salt, when it comes to sodium content. Jon.

Lee Braden, September 27, 2000 - Hi, Although I don't write often I do read the posts on an almost daily basis. My husband has had CHF for about 3 years now, and is rated somewhere between a class 3 and class 4. He is also a type 2 diabetic. He has recently been introduced to 24 hour oxygen, which seems to be helping him a lot. As he feels a lot better he wants to be on the go more. I would be interested in hearing from anyone using oxygen as to any tips they might have in regard to using oxygen away from home. We have a concentrator at home, but seem to have quite a struggle with the oxygen tanks away from the house and in the car. Any words of wisdom would be appreciated! Lee B.
Jon's note: I am also interested in any replies to this

Jon, September 30, 2000 - Hi everyone, I have good news and bad news. The good news is that everything is moved and working, including my e-mail. The bad news is that I think I have forever lost any posts sent in the last 2 days. There is literally no way for me to retrieve them. I am sincerely sorry. Hopefully, now everything will be much smoother. My current host is dedicated to business hosting and has two T1 lines with really excellent tech support, so I hope the sailing is much smoother from here on out. Jon.

All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.

Talk to Jon Site Index