The paperwork never ends The Archives
July 1-15, 2000 Archive Index

Jamie S 7-2     arthritis questions, Coxsackie virus questions
Tom B 7-2     too much time on your hands?
Jill M's 7-2 reply to Jill S' 6-30     I'm still kickin'!
Walter K 7-2     seek sources of prepared low sodium foods
Katie L 7-2     update, joining in & more
Walter K 7-2     ways this site has helped me
Phyllis A's 7-3 reply to Leland Y's 6-28     beta-blockers
Donna Z 7-3     heart girdle info
Christine D 7-3     supplements that might help
Sally 7-3     what if these bypasses fail too?
Leland Y's 7-4 reply to Lynn M's 6-28     leg cramps, coping, humor & more
Leland Y's 7-4 reply to Cheryl L's 6-28     coping & more
Ophelia 7-5     others' perceptions, work, questions & more
Jon's 7-5 reply to Ophelia's 7-5     others' perceptions, Christian viewpoint
Ben B's 7-5 reply to Walter K's 7-2     this web site
Barb L S' 7-5 reply to Jamie S' 7-2     trips, viruses, NSAIDs & more
Barb L S 7-5     to Hope, Pam E & stomach ache question
Barb L S 7-5     to Joy R, Kathryn & more
Doug K's 7-6 reply to Ophelia's 7-5     PPCM/DCM, working, bosses & more
Jack's 7-6 reply to Barb L S' 7-5     NSAIDs and CHFers
Barbara P J 7-6     Kris had her baby - prayer request
Barb L S' 7-6 reply to Ophelia's 7-5     DCM versus PPCM & what is syndrome X?
Ophelia's 7-6 reply to Jon's 7-5     coping, working, disability & more
Jon's 7-6 reply to Ophelia's 7-6     Social Security Disability & age
Hope M 7-6     thanks, headaches are gone & a cute story
Robin Lynn 7-6     to Jon & Barb, NSAIDs & rash on legs
Ruthie A 7-6     update on my back, watching the corn grow
Donna Z 7-6     seek advice about starting support group
Tom S 7-6     questions about Lasix & urination & more
Patricia G 7-6     seek CHF doc in Tulsa, Oklahoma
Sally V 7-6     seek relief from stasis dermatitis
Cheryl L's 7-6 reply to Leland Y's 7-4     thank you, positive side of things
Cheryl L's 7-6 reply to Barb L S' 7-5     coping
Lynn M 7-6     leg cramps & more
Lynn M's 7-6 reply to Sally's 7-3     bypass stories, NSAIDs & more
Lynn M's 7-6 reply to Bill D's 6-30     thanks, bioflavanoids & more
Rieale's 7-6 reply to Ophelia's 7-6     Social Security Disability & more
Karen K 7-6     husband has serious health problem - prayer request
Barb L S' 7-6 reply to Jack's 7-6     Vioxx, need some help with chemical names
Barb L S' 7-6 reply to Robin Lynn's 7-6     & to Tom S, Ruthie, Ophelia & more
Barb L S' 7-6 reply to Cheryl L's 7-6     here's what I meant & to Karen & more
Cheryl L's 7-8 reply to Donna Z's 7-6     CHF support group experience
Karen K 7-8     update on my husband, prayer request
Charlotte 7-8     seek CHF doctor in Oklahoma City
Nathan M 7-8     seek CHF doctor in Houston area
Barb L S' 7-8 reply to Barbara P J's 7-6     how are your friends doing?
Lori P 7-8     question that has really been bugging me
Doug K 7-8     sorry to hear about Al H's death
Bob for his wife, Lynn M 7-8     Lynn is in the hospital
Gus R's 7-8 reply to Charlotte's 7-8     CHF specialist in Oklahoma City
Lori P 7-9     has anyone heard from Susie T?
Luc D 7-9     will miss Al
Ann Penrod 7-9     seek CHF doctor in southeast Iowa
Tom S' 7-9 reply to Lori P's 7-8     the act of dying
Dave K's 7-9 reply to Tom S' 7-9     well said
Taavi K 7-9     lost some e-mails, please resend
Sy 7-9     dizziness after ICD activated - question
Hinton 7-10     there is hope
Barbara Mayne 7-10     question about windy days
Donna Z 7-10     thanks Cheryl & Jon
Tim B's 7-10 reply to Sally's 7-3     bypass experiences
Jon 7-11     late updates & geostinkies
Gerald F's 7-11 reply to Charlotte's 7-8     Oklahoma CHF specialist
Ginger 7-11     has anyone had the "ACE inhibitor cough?"
Mike Joye 7-11     is anyone in the same boat?
Joe S' 7-11 reply to Barbara's 7-10     wind in the face
Tom S' 7-11 reply to Ginger's 7-11     ACE inhibitor cough
Charlotte H's 7-11 reply to Gerald F's 7-11     doctors & EFs
Lisa M's 7-11 reply to Hintin's 7-10     also had a heart transplant
Robin Lynn's 7-11 reply to Ginger's 7-11     ACE inhibitor cough
Jon 7-11     transplant drug recalled
Elaine 7-12     now have breast cancer too & more
John J 7-12     seek more low sodium recipes
Janet S' 7-12 reply to Mike Joye's 7-11     update, EF, meds, hopes & more
Joy R 7-12     digoxin toxicity symptoms questions & more
Jon's 7-12 reply to Joy R's 7-12     doctors & more
Patrick M 7-12     specialist & Medicare questions
Jon's 7-12 reply to Patrick M's 7-12     CHF specialists & Medicare
Clara 7-12     seek CHF specialist in Houston & salt sub question
Mary 7-12     PVCs, rhythm questions & more
Gerald F's 7-12 reply to Ginger's 7-11     ACE inhibitor cough
Phyllis A's 7-12 reply to Tom S' 7-6     meds & voiding a lot
Phyllis A's 7-12 reply to Elaine's 7-7     breast cancer & CHF
Roz' 7-13 reply to Joy R's 7-12     you deserve better & more
Lynn M 7-13     venting about recent hospitalization
Jon's 7-13 reply to Lynn M's 7-13     sudden cardiac death, numbers & more
Thelma's 7-13 reply to Mary's 7-12     arrhythmia, coping, alternatives, options & more
Kris Jones 7-13     update - doing well
Sox Nelson's 7-13 reply to Joy R's 7-12     look for a new doctor & more
Barbara M's 7-13 reply to Joe S' 7-11     windy, humid weather & breathing
Donna Z's 7-13 reply to Mary's 7-12     please get another opinion
Walter K's 7-13 reply to John J's 7-12     low sodium sources
Kathryn's 7-13 reply to Jon's 7-12     like the CHF doctor directory
Tim Brownie 7-13     seek information on heart device
Cheryl G 7-13     seek advice on foot and leg pain
Joy R 7-13     just venting about this doctor
Joy R's 7-13 reply to Jon's 7-12     the right doctor & more
Krista 7-13     biventricular pacers & ICDs
Ben B's 7-13 reply to Lynn M's 7-13     arrhythmias, treatment & more
Tom S' 7-13 reply to Cheryl G's 7-13     leg and foot pain
Jon's 7-13 reply to Tom S' 7-13     leg and foot pain
Charlotte H's 7-13 reply to Joy R's 7-13     getting the right doctor is critical
Doug K's 7-13 reply to Joy R's 7-13     getting the right doctor, this site & more
Roz W 7-13     getting the right doctor & more
Susan K 7-13     has CoQ10 really helped anyone here?
Jon's 7-13 reply to Susan K's 7-13     CoQ10 has helped me
Eileen 7-13     MyoVive has helped me
Joy R's 7-14 reply to Doug K's 7-13     rehab, diastolic dysfunction & more
Lynn M's 7-14 reply to Jon's 7-13     SCD, arrhythmias, meds & more
Lynn M's 7-14 reply to Tim Brownie's 7-13     do you mean LVADs?
Barb L S' 7-14 reply to Joy R's 7-13     doctors, attitudes, coping & more
Connie R 7-14     SSD paperwork, dobutamine & more
Barb L S' 7-14 reply to Barbara M's 7-13     windy weather & to Cheryl G about NSAIDs
Doug K's 7-14 reply to Joy R's 7-14     doctors, diastolic dysfunction & more
Tom S' 7-14 reply to Connie R's 7-14     SSD qualification
Linda M's 7-15 reply to Doug K's 7-14     diastolic dysfunction - anyone else?
Brenda C's 7-15 reply to Connie R's 7-14     Disability
Barb L S 7-15     memory question & Disability Url
Donna McGowan 7-15     SSD/SSI problems big time
Jon's 7-15 reply to Donna McGowan's 7-15     SSD & SSI
Tom S' 7-15 reply to Barb L S' 7-15     memory & CHF
Paula 7-15     Coreg for young children with CHF?
Doug K's 7-15 reply to Linda M's 7-15     Coreg, supplements, congratulations & more

Jamie S, July 2, 2000 - Hi all, Well I get to add a disease to my little list: Arthritis. My x-rays came back showing that my left hip has moderate osteoarthritis and my right hip is showing the start of it. I'll be seeing a doctor to get information and I am sure that the first bit of advice is to lose weight. If anyone has anything like advice for the arthritis, please let me know; Especially over the counter pain relief, like Aleve and such. I have prescription strenth ibruprofen but that wouldn't last forever, plus it gives me heartburn.
     My daughter and I had Coxsackie virus. She dealt with it better than I did. I was just wondering how long before it could (maybe) affect my heart and cause symptoms and such? I wonder what the chances are of surviving PPCM, then being hit with a virus and getting it again. Thanks, Jamie.

Tom B, July 2, 2000 - Hi everyone, If time is dragging on your hands each day, here is an activity I enjoy whenever I want to kill some time and concurrently feel I helped somebody else in the process. There is a web site at where you can sign up to be an "expert" on whatever you are an expert on; anything from gardening to travel to the business world. There are hundreds of catagories. The site markets itself to other folks who want real world advice from experts (that's you!). There are always intriguing questions and it is fun to tap the knowledge you have in your area of expertise.

Jill M's July 2 reply to Jill S' June 30, 2000 - Hi, I have replied to Jill S and I'm sorry I've been such a stranger. I do tune in regularly. I think my situation seems to be a lot like Ben B's: I'm not about to run any marathons but I generally feel okay. My cardiologist says I am well compensated. I now see him only every 6 months. I'm on all the usual CHF meds and since all my blood tests are consistently normal, he prefers that I take no added vitamins, minerals, etc. I do a lot of work from home for publishing houses and that takes up most of my free time, but I'm still a member of this exclusive club and will always be eternally grateful for finding this site almost 3 years ago when there were about 10 of us! Best wishes, Jill M.

Walter K, July 2, 2000 - Hi all, Does anyone know of a good source of prepared low-salt foods on the Web? Jon, I appreciate your recipes but I would like to know what else might be available. I found some stuff locally but not much. There are lots of low-fat things but much low-salt. Walter K.

Katie L, July 2, 2000 - Hi Jon, I have been coming to The Beat Goes On for several years. I just go to favorites and you are there. I don't remember how I orginally connected. I have a friend who was transplanted in February of this year. Prior to transplant he had a Novacor pump for 6 to 7 months. He would like to join in at The Beat Goes On but I don't know the address for connecting. His e-mail address is Meantime, we are still waiting for our beeper to go off. The waiting and unknown is getting to all of us in this household.
Jon's note: Just have him e-mail me here

Walter K, July 2, 2000 - Hi, Lots of people, including me, have commented in general terms on what a great site this is. I would like to be more specific. This site has:

  1. taught me there such things as CHF specialists. I was ignorant of this and was using regular cardiologists, which was a mistake - particularly the ones I had. I am now a patient in a CHF clinic; much better.
  2. led to e-mail correspondence wth 2 other visitors to the site who have been most helpful.
  3. furthermore, one of my new correspondents happens to live near me (and uses the same CHF clinic). She has recommended a good local cardiologist who has good contacts with the CHF clinic. I sorely needed a good local cardiologist and this recommendation was most welcome.
  4. showed me that my 2 previous local cardiologists were making mistakes, which led to me changing doctors. One was using Coreg as a replacement for an ACE inhibitor rather than as a supplement to it. The other had me on Norvasc, which may be good for some people but was not right for me. I know of Jon's disclaimer about getting medical advice from the site because most of the people here are not doctors. However, the CHF clinic confirmed that these were both errors. So the site may literally have been a life saver for me.

So Jon, you can see your site has been more than just interesting to me. Thanks.
Jon's note: You're welcome

Phyllis A's July 3 reply to Leland Y's June 28, 2000 - Hello Leland, I was recently put on beta-blockers like I said and I experienced bad nightmares or dreams. My cardiologist had warned me about them. He said they would go away when my body adjusted to the meds. My beta blocker is metoprolol, it has been a couple of months now and I only get them now and then, but in the beginning I got them every night. It was worth it, for how much better I feel now. I can walk longer without shortness of breath and I am only fatigued now and then, mostly when I overdo it because I feel so well. I have to remember that I still have CHF and asthma.

Donna Z, July 3, 2000 - Hi All, I found an interesting article in today's Philadelphia Inquirer on the new surgery for hearts, called CSD. It's in the Health and Science section and they talk about the CSD and the use for it. As of this time, only a few people will have it done. They said they know it's safe but they don't know if it is effective yet. The article goes on to say that the FDA has approved a study in which 200 patients will be randomly assigned the jacket or conventional medical treatment. Therefore a subset of patients who already need open-heart surgery for mitral valve repair will be offered the jacket. This is being done a the University of Pennsylvania. Donna.

Christine D, July 3, 2000 - Hi everybody, I have not posted in awhile but have been reading mail from everyone. I was interested to see how many of you suffer from leg cramps because I did too, especially since I am a diabetic. I looked into amino acids and started taking Alpha-lipoic acid at a very minimum of 100mg, then slowly increased it and now I take 250mg and will be increasing it again. You would be surprised but I am able to walk much better and without the cramping and burning sensation in the back of my legs. I think if you want to try it, you should speak to your doctor about it before starting anything. I was told by my naturopathic doctor that it is good for diabetic neuropathy and it sure helped.
     For water rention, which I rarely have since I walk a lot, but should I have that problem because I had too much salt that day, I will take taurine, another amino acid which naturally makes you pass water. I prefer to stay on the natural stuff, where it does not correct one thing and cause another so you have to have another pill. Of course, you know what is best for you and I have always talked over things with my doctor and the naturopathic doctor so that both are well informed about what I am taking. I do hope you folks can benefit from this as I have and therefore I thought sharing this knowledge with you may help you as well. Chris D.

Sally, July 3, 2000 - Hi, A few years back I read the message boards faithfully and even asked questions. I was recovering from a heart attack, triple bypass and mitral valve repair. Unfortunately for me, I had a disturbing day and night in October. I then had 2 caths, one via my groin and another via my arm. My valve was leaking badly and my bypasses were blocked, so back into surgery I went, receiving another triple bypass, a mechanical valve and a pacemaker. I am wondering if anyone on this site has had duplicate bypasses. Mine failed in 3 years. Now I have new ones but what if they fail?

Leland Y's July 4 reply to Lynn M's June 28, 2000 - Hi Lynn, Reading your post regarding leg cramps: Can't cry about everything, but it did make me laugh quite a bit, such as you described going from massage to quinine to quinine water to hot water soaks to brandy to nitro patches. It was hiliarious but I know that muscle cramps are not funny; Then surgery on top of that. I have to sympathize with you. It reminded me of the lady who tried to lose weight with one remedy after another (just like your leg cramp treatments) just short of having her mouth wired shut. This joke was told by some well-known comedian. His remedy was to take Valium. Take Valium? Comedian: If you take enough Valium, the food will fall out of your mouth! Meanwhile, I am so glad your leg cramp problems are partially solved, for now. Luv and salutations, Leland.

Leland Y's July 4 reply to Cheryl L's June 28, 2000 - Hi Cheryl, Be thankful you have such a wonderful boss; Be thankful you have such a wonderful husband; Be thankful you can still make it out the house; Be thankful you have enough energy to go to church, and participate. Just watch how much you eat (sodium). A lot of tiredness is due to edema and the heart having to work extra hard. Better times are coming. We all have "down" times, sometimes for weeks, especially if we catch a cold or overdo anything. God bless you, Leland.

Ophelia, July 5, 2000 - Hi, I was diagnosed with CHF four months ago on my 30th birthday (what a birthday gift). This has been by far the most interesting site and it has been helpful too. I have a great attitude 95% of the time and seem to be an inspiration to the young people of my church but when I have my bad days, I don't want them to know because I know some of them are scared. I'm good with the young people and since I've been sick, they've come in groves to help my husband with chores. I just want people to know that the Lord can do anything and even if I never get healed, I know He's still awesome and that's His will, and it's ok. I have a lot of those see-saw days lately because some days I feel pretty good and tend to overdo it, then 2 days later I'm in bed. The only thing I think I'm concerned with is the fact that I'm not at work. I was in the middle of working on my Master's degree and had a great but stressful job when I got sick. Some of my co-workers see me as "unproductive" since I've been home for 4 months. Has anyone out there recovered enough to return to work? I have never drank, smoked or been overweight and am otherwise healthy at 130lbs. By the way, I have a 5 year old and an 8 month old daughter, although I was not diagnosed with PPCM, just DCM. My EF was 10% four months ago and was 27% after heart cath one month ago.

Jon's July 5 reply to Ophelia's July 5, 2000 - Hi Ophelia, Welcome to The Beat Goes On. Putting on a "brave face" so others can't see our own doubts, fears and weaknesses doesn't help anyone. Christians are people who have acknowledged their own weakness (sin) and accepted Jesus' strength because it is so much better than our own. To pretend that we are strong when we are not benefits no one, young or old, especially if done for the wrong reasons. We Christians sometimes worry that we cause unbelievers to view God as less than He is by our poor behavior, but that's not true. Let's face it, God doesn't need us to make Him look good. Think about it. He just needs us to lean on Him. He'll take care of the rest.
     So don't worry about how others view you. Concentrate on Jesus and Jesus alone, and He will work His works through you when and if it pleases Him to do so, with or without your knowing participation. Be His and He'll do the rest. Like Paul, through our weakness is His strength shown. If I had prayed for healing and been healed, this web site would never have happened and Jesus would have helped no one through it all these years. When you're having a bad day, don't hide it - let others see you as you are and give them a chance to offer you their strength to help you through it.
     Choice of words can mean a lot. <g> I am in no way unproductive. However, I am very unreliable. I can only function in spurts, for periods ranging from 5 minutes to a few hours at a stretch. I cannot meet deadlines because I never know how much energy or strength I will have later today, much less tomorrow or next week. Still, I can get a lot done and done quite well if allowed to set my own schedule and if no deadlines exist. So no matter how others view you, don't view yourself as unproductive but rather as inconsistent, and that's just a result of your illness - not a character flaw! Jon.

Ben B's July 5 reply to Walter K's July 2, 2000 - Hi Walter, The thing about this site that is really impressive is the amount of information on it, and that it was constructed and is maintained by a guy with a debilitating disease. This has been a good sign to me to prayerfully consider ways to contribute and accomplish things, even though I have this illness. I haven't been enormously successful at this so far, but I'm trying a lot of things. <lol> Also, with the amount of traffic this place gets it could be a real revenue generator, but Jon has graciously chosen to spare us from wall to wall banner ads.
Jon's note: I had an offer once that tempted me but couldn't bring myself to do it ;-)

Barb L S' July 5 reply to Jamie S' July 2, 2000 - Hello everyone, We finally had a trip with the whole family for the first time in 3 years. I cannot believe it's already July 5, 2000! We here at home also cannot believe that I endured the whole trip to the Poconos and Cape May. I didn't want to go because I felt sick on Saturday but we went. I pushed and the only one that knew just how much I worked at this was my fiance, Herb. <lol> He did every single thing and made this dream trip for all of us become a reality. Besides an overnight trip to AC back on Valentine's Day, I haven't been anywhere in about 3 years. The last trip we went on, I was 6 months pregnant and it felt like a marathon. It feels like my body is playing catch up. I started to sleep endlessly 2 days ago, while still away. I didn't wake up until 1:30 today and I just can't stand that part. It feels like I'm missing out on life and that scares me more than anything, I think.
     Anyway, Jon's site is set up as our default home page so usually I read everything and post or come back later, but Jamie, I saw and read your post and felt I had to reply to you now. First, I feel badly that you have arthritis. I never had that but my mother did, so I know it's painful. I did want to ask you to check with your doctor because I know that I cannot take ibuprofen, Motrin, Aleve and a whole bunch of other ones because they have sodium in them and will make me retain fluid. They are called NSAIDs. There is also a prescription called Vioxx, which had been prescribed for me. It has so much sodium that I went into mild CHF. So if you're at a risk for any of this, please talk with your doctor.
     Also, I wanted to thank you so much for all of your comforting e-mails. Hopefully now I can give something back to you. Please don't waste your precious, beautiful moments wondering if you can get something. We did that and it didn't change anything at all. What I would do - and I'm only saying this because we are still going through this - is talk with a CHF specialist. They know all about these kinds of illnesses and if they don't, then maybe the doctor needs to be changed. We sat down with my heart failure and transplant specialist, and she advised us on what to do about Alex. She is going to do most of the testing herself because she knows that we don't have a lot of money. She told us exactly what she wants me to have done. It took a long time to find a good doctor and I have to travel with oxygen to go see her six hours both ways, but I would not change my doctor. She's very good. So please, if your concerns are strong (they certainly are valid) ask a specialist. You will feel so much better, no matter which way.
     On our way home yesterday we noticed bumps reappearing on Ali's face and know we can only take it one thing at a time. I hope I didn't scare you with my e-mail. I did not intend to do that. Coxsackie viruses are very real, as are differences in every person. He could be very sick yet his father may not be. You said that you had the coxsackie virus so please again, ask your doctor so you can get the right answer for you. Also, the Vioxx medication I mentioned was prescribed to me from a dentist that knew of my whole history and was okayed by my pharmacist, who also knows my whole history. So, please take care and I'm thinking of you and your daughter.
     Everyone, thank you for all of your mail. All of it has helped, a lot. Happy fourth of July to everyone and again, I hope and pray all is ok with everyone here. God bless, Barb L. S.

Barb L S, July 5, 2000 - Hello everybody, I hope and pray all is ok with everyone today. Also, I'm super-fatigued and it has taken me nearly 2 hours to post my replies, so please have patience with me. My brain just doesn't seem to be working today. I may make a mistake.
     Hi Hope. I also take Lasix and Aldactone. I don't suffer from headeaches, but always get an upset stomach. The same thing happens to me with digoxin. I don't know why but my doctors have said that there are a lot of side effects from any medication, which I tend to believe. I hope you get relief and feel better soon. I know you mentioned your e-mail and I will do that also. This is just in case anyone else has some of these side effects.
     My question was actually going to be, "Does anyone else experience these stomachache side effects that I've experienced so much from these meds?"
     Hi Pam E, Can you tell me what syndrome X is? From what I am reading, it sounds as if it has something to do with the esophagus. I have a lot of problems with my esophagus and now have Barrett's esophagus and am just wondering if that's what syndrome X is? Have a good day. God bless, Barb L. S.

Barb L S, July 5, 2000 - Hi, I would like to thank Kathryn for submitting that story of faith and Jon for putting it in. My eyes needed to see that. I always tell a special friend of mine that once I learned being strong was actually in learning to ask for help and not trying to be strong on my own, this is when I felt such a weight taken off me and slowly over time, learned to let go and give everything to God. I'm not a preacher so that is all I will say but again Kathryn and Jon, thank you for that.
     Joy R, I apologize because I meant to post back to you and then things started to happen here at home. Thank you for helping me the way you have today! I have been on again-off again with IV dobutamine in-home and had it not too long ago. I feel so grateful because no matter how tired I felt going away or sad because my fiance carried me, I was able to go. Even if I can't ever go again, those 3 days were a blessing in my life and it's a post from people like you that jolts me back to reality. A lot of the time, I had to be on that medication, however my doctor feels the risks outweigh the benefits and now refuses to do it again. I would then have to go back in the hospital but here you are Joy, with IV dobutamine and talking positively about cardiac rehab! Wow, what a breath of fresh air. I have said that to a couple of people in my life as a Net person. I had just looked at your post and thought, wow, this is great! Why am I complaining? So, I'm tired. No surprise there anyway! Thank you.
     Guess what? I was carried on the beach down to the water because it was our son's first time that he might remember at a beach. I was feeling low because I knew I would miss it and regret it forever, so I got up and tried. That's all my fiance wanted to see and then he carried me the rest of the way and we both played with Ali, his very first time in a lake. Let me just say this: Muscles? I had to borrow them from somebody else. By the second time we lifted him, I was short of breath and was asked to stop but made it to 5 baby-lifts under water! It felt great! So now I will rest, knowing that there are positive, grateful people like yourself helping others like me. And I will talk again to my doctor about doing just a little at home; Just a few times every day will add up and count for something. I wish all the best for you and if you ever want to, e-mail me, ok? Everyone else, please take care. Barb L. S.

Doug K's July 6 reply to Ophelia's July 5, 2000 - Hello Ophelia, I'm sorry to hear of your diagnosis. Even though you weren't diagnosed with PPCM, it is possible that in your case you may improve. From what you say, your youngest child is only 8 months old and you were diagnosed 4 months ago. So it is a possibility that your heart may return to normal yet. What does your doctor say about the possibility of PPCM? Your last cath EF showed quite a bit of improvement and that is a good sign. As for work, I work 40-45 hours a week at age 44 and it is difficult. I was diagnosed over 5 years ago and frankly, it is difficult at times to keep co-workers from getting rattled about how come I don't have to do certain things; work as many hours as they do or work physically as hard as they do. Sometimes guilt comes into play as well with me, wanting to work as I used to. But as you pointed out, those burn-out days that follow doing too much really remind you to take your time.
     I had to almost get legal help because of one boss I had a few years ago. He became beligerent and frankly just didn't care what happened to me. You have to take the attitude that they are lucky to still have you working at all. I also try to remember that I am lucky to be able to cover enough of my job to keep it and my health insurance. So I try to do a few little extra things when I am able to help cover the days when I am wasted. Still, there is the Americans with Disabilites Act of 1990 if you should need it. Good luck to you.

Jack's July 6 reply to Barb L S' July 5, 2000 - Hey Barb, The only one of those NSAIDS you mentioned that contains sodium is Aleve. All the rest of them are sodium-free but they are real bad stuff for people with heart problems anyway. Actually, they are real bad stuff for people without heart problems too. To determine the chemical makeup of drugs (or anything else), first find out the chemical name and then go to and put the name in. It will give you all the other names it is called and the chemical makeup. If there is no "N" in the formula, then there is no sodium. Jack.
Jon's note: Jack & Barb are right - NSAIDs are bad for CHFers. They cause you to retain sodium in a big way, whether or not they actually contain sodium

Barbara P J, July 6, 2000 - Hi, I just wanted all to know that Kris had a baby girl today. Sadie Elizabeth entered this world at 12:05 PM weighing 5 lbs 15 oz. She was 17 plus inches. Please keep Kris and Sadie in your prayers. Sadie is having some problems with breathing but Kris says the doctors feel positive. Right now Kris is also doing okay. I just wanted all to know.

Barb L S' July 6 reply to Ophelia's July 5, 2000 - Hello again to everybody, Ophelia, I had just wanted to ask you if you developed your heart disease after giving birth to your daughter, during pregnancy or anywhere in between. I felt so sad and also empathized when reading your post because I went through the same thing. If you can, post here or e-mail me and let me know, ok? I did want to say that just because you didn't get the diagnosis of PPCM doesn't mean it didn't come from pregnancy. Please let me know and I can share my story with you. Of course, your doctors know and you should listen to them, not me. I'm just curious.
     Jon, it was strange that you had written your reply to Ophelia because at that very same time, I had been thanking Hope and you for the story on faith and as soon as I clicked submit, there you were speaking out about being Christian. I believe that everything happens for a reason. If syndrome X is esophageal, I have that kind of reflux badly and it's very painful. What is sndrome X? Barb L. S.

Ophelia's July 6 reply to Jon's July 5, 2000 - Hi, Thanks Jon, for the welcome advice and thanks to all who e-mailed me. I appreciated all the thoughts. I am going to take it in stride, since 10 minutes of gardening alone (once a week) makes me very tired. For those who asked, yes, disability was mentioned and I am currently receiving short-term disability at my job but because of my age, I was told I might not be able to receive Social Security so I am still contemplating going back to work some time in the future even if it may be a way off. When I feel up to it, I'll question the benefits specialist at our head office to make sure I don't have other options, because I should qualify for LTD.
     I am thankful for all the help I am receiving, especially from my mom in law, who helps with the children while my husband is at work. This is truly a time where I am in a season of receiving so I have no choice but to accept the help I'm offered. Thanks for the concerns.

Jon's July 6 reply to Ophelia's July 6, 2000 - Hi Ophelia, Age should not affect in any way your qualification for Social Security Disability. The amount of time you have worked and payed into the SSA fund will be a factor, but not your age. Jon.

Hope M, July 6, 2000 - Hi everyone, Thank you to the people who commented about the Lasix and Aldactone and headache question that I posed. It finally got so bad I went back to taking dyazide; No more headaches. My doctor thinks the headaches are more likely due to Aldactone than Lasix and suggested I try taking half the Aldactone dose but the headaches didn't seem to be any less severe. I've also noticed that my bowels are better and that I had developed a significant drooling when I slept that has now returned to normal. These meds affect a lot more than our hearts!
     I have a cute thing to share. My husband decided to organize our Internet bookmarks. He put them into various folders - for me, my daughter, etc. One of them was a "FUN" folder. When I went looking for The Beat Goes On in my folder this evening, I couldn't find it, so I looked through all the folders and finally located it under FUN!

Robin Lynn, July 6, 2000 - Hello to everyone, I hope you all had a safe and wonderful Fourth. Jon, I dont know if I am right but I don't think that Ophelia was talking about hiding her illness. I find great strength I never knew I had until I began working at the church with preschoolers. When I am having a bad day, I also won't let it be known to others. It's only between myself and my Heavenly Father. For only He knows how to handle that day and that problem and unless I feel that I am in need of prayer, I choose not to worry the people who care about me. I know that I will feel better in time. I have learned that when I do let these things be known, especially at the rate of bad days I have, on the good days concerned people ask how I am feeling and so on. I just want to enjoy the good ones and not be reminded that the bad ones were there because my body will remind me soon enough.
     I was givin Vioxx too, by a ER doc and I went into mild CHF. Be extra careful with these meds, they can kill you.
     Barb, Syndrome X is now called microvasacular spasms or microvessel disease. In my case it is the tiny blood vessels in and around my heart that spasm. It could be happening in my whole body. I really don't know for sure if it is the same as the esophagus spasms but I am thinking it is not since that is one of the things they rule out during the process of diagnosis. My cardiologist says the condition is benign but I would argue now that I have read some of the studies on it. In some studies, it is directly linked to early cardiomyopathy. Anyone interested in reading these studies go here. By the way Barb, your vacation sounds great. Everyone remember that making wonderful memories is important to the people who love us. Use the energy you have to make as many as possible and thank God for every moment every day.
     Now for my update, I went to my cardiologist yesterday and showed him the rash on my legs. It started out as a small patch a few months ago and is now halfway up both of my legs. I am thinking it is pitechia, but he didn't say so. What he did say is that it looked like "Something you usually see after a severe trauma, like an auto accident." If there is trauma going on, it is somewhere inside my body, I guess. It makes my legs look yellowish brown and one area is starting to look bruised. He told me to call my internal doc tomorrow and follow up on it ASAP. They do always have that fatigue feeling in them and I just wonder if it is somehow associated. Blessings to all, Robin Lynn.

Ruthie A, July 6, 2000 - Hi everyone, I wanted to let you all know that I am still around, though still hurting a lot. The epidural injection was somewhat successful and I will find out on Friday if I have to have another one. I have mixed feelings because the injection appears to help my back problems but the procedure is pretty painful and I am not allowed to do anything at all for 48 hours. The physical therapy is its usual boring self. I can find better things to do with my time than go to PT, but it is supposed to be the best thing for my spinal condition.
     Now that I live in Indiana, I am surrounded by corn fields. Ever see corn grow? You can watch it on a web cam at It updates every 15 minutes during the day. I know it sounds silly to get excited about growing corn but there is also something quite special about watching life unfold. We who are suffering from CHF have death always lurking in the back of our minds, never far from the surface. But growing corn represents real life, the kind that is renewed and refreshed every year. Life has become precious to me in all forms and I for one am going to watch the corn with gratefulness and thankfulness. Life is a gift that I can no longer take for granted, Ruthie A.

Donna Z, July 6, 2000 - Hello All, I am helping start a support group and would love to hear from people who have been to one. Please let me know what you liked or disliked about these groups. I would also be interested in topics to discuss. At this point I am trying to get away from this becoming a pity party. I would much rather have a positive upbeat group. So far we thought about having in a nutritionist, a pharmacist, a exercise physiologist, and some different doctors coming in to talk about new drugs and procedures, plus a question and answer session. Any input would be greatly appreciated. We will be having these meetings every 3 months, but I need more topics. Donna.
Jon's note: Consider including a talk by a hospital medical librarian about how to use their services

Tom S, July 6, 2000 - Hi, For the past 5 years I have been assigned a daily dose of 320mg of Lasix but I usually end up taking only 160mg because I forget to take the evening dose for one reason or another. A little over a year ago my cardiologist threw 25mg of Aldactone into the mix and while I have experienced low grade headaches from time to time, I haven't noticed anything much different. The one thing that does concern me is the fact that I have noticed a very erratic voiding pattern and wonder if it is due to the long term Lasix therapy. Some days I can void as much as a gallon of fluid within an hour or two of taking the Lasix or some days less than 500cc. I have also noticed that when I forget to take the Lasix and drink a couple of cups of coffee, I seem to void as if I had taken the usual Lasix dose. I guess this is more by the way of my particular situation than anything so I wonder if any other "long-term" CHFers have had a similar reaction to Lasix?

Patricia G, July 6, 2000 - Hi, Does anyone know of a CHF specialist in Tulsa, Oklahoma?

Sally V, July 6, 2000 - Hi, I'm new to this site or any site for that matter. Does anybody have any advice about how to deal with the burning and rash from stasis dermatitis? My legs are turning brown, and the tingling and burning drives me crazy. It keeps me awake nights despite the fact that I no longer swell as badly as I did when first diagnosed 3 years ago with CHF. Otherwise I'm pretty much symptom-free, just slowed down a little. I take Lasix, an ACE inhibitor, beta-blocker and a calcium channel blocker which I know doesn't help, but I gotta take it anyway to keep my blood pressure under control. I do all the other stuff: very low salt, etc. I would welcome any ideas.

Cheryl L's July 6 reply to Leland Y's July 4, 2000 - Dear Leland, Thank you so much for your reply. You know, sometimes we just see the hardships that we are going through and never look at the blessings that we have. I do have a good life, God has blessed me in so many ways and instead of fussing about the negative, I should be concentrating on the positive. I pray that God blessings be upon you and that He will keep you safe. In God's love, Cheryl L.

Cheryl L's July 6 reply to Barb L S' July 5, 2000 - Dear Barbara, You really blew me away! I thought that I was the only control freak out there. I still have a problem asking for help. I will ask my husband Gene, for help sometimes but that is like pulling teeth. I just feel as though I am giving in to the disease when I let others do things for me. I also had a problem with letting people know when I couldn't do something like walking up stairs, standing for long periods for time, etc,... Notice the keyword, "had." This one I am finally getting under control. I know that I am to give my problems to God and let Him handle them but whenever I take them to the altar, I end up picking them back up when I go to my seat. Please keep me in your prayers as I will keep you in mine. God bless, Cheryl L.

Lynn M, July 6, 2000 - Hi all, I'm sorry I've taken so long to respond to folks who responded to my message about leg cramps. I'm in a drug study for an endothelin antagonist and have been quite sick the past few days since they doubled the dose last Thursday. I'm still waiting for one of the doctors to call me back. Anyway Leland, I'm so glad that you found my saga about dealing with leg cramps amusing. That's one reason why I posted it. <g> Even though the surgery did wonders for me (for example, leg ulcers healed even before I got out of the ICU!), I'm starting to get annoying foot cramps again 2 years later. So Christine, I'm going to try your suggestion of alpha-lipoic acid. Lynn.

Lynn M's July 6 reply to Sally's July 3, 2000 - Hi Sally, The plaque poster child responds: I'm truly sorry to hear that you had to have a CABG "redo." I had my second CABG in June of 1999 only 20 months after the first one and boy, was it ever a mess, despite having the chief of cardiothoracic surgery leading the surgical team, which included other top guns from UCLA! The radial artery graft used in my first bypass never dilated so it had to be bypassed again and I had a new blockage in the LAD. Later I had to have an angioplasty to open yet another blockage in the LAD that was actually caused by the graft sewn into it during the bypass. I still have a partial blockage at the bottom of my LAD where the graft was sewn in, which needs to be finished in yet another angioplasty since they could only open part of it in 2 angioplasties last fall. I say forget it. It's already caused one silent infarct so just let the rest of it infarct silently. I had so much scar tissue between my heart and my sternum from my first CABG that the second one took 10 hours. They didn't even let me wake up until the next day. Well the next day I went into a-fib, then v-tach, plus they had to give me yet another blood transfusion because my blood pressure was so low. They had about 10 or 12 different IVs running into me.
     Later I found that some of the drugs were phosphodiesterase inhibitors, so apparently my heart had really tanked out. Hubby said I was barely hanging on that day. On th eother hand, while everyone around me was all freaked out, I was feeling no pain. ;-) Despite having 4 chest tubes, instead of the usual 2, I developed pleural effusions. Are we having fun yet? The surgical ICU in the west LA Veteran's hospital is one huge room full of beds so I was able to see other patients, including very old men, come in after their CABGs and leave while I was still there. One of the surgeons said to me, "You cannot have any more CABGs." Actually, that was good news because I certainly didn't want to go through that again. He also said that he was keeping me in the SICU for so long mainly because of his anxiety.
     In the process of doing the bypass they aggravated an old shoulder injury so I ended up on huge doses of ibuprofen after a shot of an enormously powerful NSAID called toleridol or something. That's some awesome stuff for killing pain. A month later I ended up back in the hospital with pulmonary edema and was on the ventilator for 3 days. The ibuprofen was said to be the culprit. So this is an aside to the thread about the dangers of NSAIDs for CHFers. Being on the ventilator with that tube in your trachea and your hands tied down is no fun. Be careful with NSAIDs. I don't think the fluid retention problem they cause has all that much to do with whether they contain sodium.
     Anyway Sally, I've heard of people having at least 5 CABGs so not every CABG redo is as disasterous as mine. I truly hope you don't ever have to go through another one. They're not fun, even without complications. Lynn.

Lynn M's July 6 reply to Bill D's June 30, 2000 - Hi Bill, Oooops! Major apologies for not including you in my thank-yous for responses to my post about leg cramps! I hit the Submit button on the form too soon. So your wife takes bioflavanoids for her legs? Hmmm. Isn't that the same stuff wine contains? Maybe that's one reason the brandy worked. (searching desperately for an medicinal excuse to drink wine here) I'll definitely have to try that, the pills, I mean. ;-) Lynn M.

Rieale's July 6 reply to Ophelia's July 6, 2000 - Hi, Good news! My Social Security was approved, on the first try. Ophelia, I was diagnosed with severe CHF 7 months ago. I am only 22 years old. Age won't really factor in much. People of all ages are disabled and need help. Just keep pushing. Good luck to you and if you need someone to talk with, just drop me an e-mail.

Karen K, July 6, 2000 - Hi folks, I need prayers big time. My husband had 2 MRIs last week. One was from the neck to hip and the other was of his head. The doctor he saw is an orthopedic surgeon. We (family members) have known something was going on for quite awhile and so do friends but Glenn insisted it was from a fall in January of 1999. His balance is poor, he spills things a lot and is quite uncoordinated. He refused to see a doctor following his appointment in 1999, when he was told it could be a bruised sciatic nerve.
     The bottom line is that he has been bleeding inside his brain. I've noticed what I think are personality changes and loss of memory. Bear in mind this is a person who is an absolute workaholic. He gets up at 4:00 AM and often works until 6:00 PM. It is very rare when he doesn't work on Saturday and often Sunday before church. I'm used to being alone and have adjusted after a lot of therapy. He is to see a neurologist tomorrow but I'm not allowed to go along. He doesn't want "mommy" at any of his appointments.
     Needless to say, I am very stressed and going through a gamut of emotions right now. He has expressed the fact that he wants nothing done to make him better. To be honest, there are times I feel I would be better off without him in my life. I love the guy but he is my major stressor. Following my diagnosis in 1991, I ran through the whole grieving process. I went through counseling and have come to grips with my situation and lead a fairly "normal" life. I've even managed to go back to work part-time, although I know I can never work full-time again.
     Sorry to toss this out but I have no one to talk to at this point. He doesn't want anyone from work to know at this point as it could affect his job. Please keep both of us in your prayers. Karen K.

Barb L S' July 6 reply to Jack's July 6, 2000 - Hi everyone, Thanks Jon and Jack. Jon, the way you answered the NSAIDs question is how I was attempting to explain it. My apologies to everyone and thanks Jack, for pointing that out. I would do as you say but I don't even know how to find out what a medicine's chemical name is. Also, I definitely don't want to give out the wrong advice no matter what good intentions go along with it. The only time I say something is if I've personally been through it, know that it can hurt someone with CHF, or my CHF specialist has given me strong advice on what not to take, over the counter or otherwise. Jack, if you get a chance, can you email me and explain how I can do this on my own? Considering that my dentist prescribed it and my pharmacist okayed it, even though there were so many red flags going up, I need to be able to read, break down and understand the medications prescribed for me.
     This also happened with Claritin-D, although slightly different. I had been prescribed that by a cardiologist and it scared me to death. One pill and I was up all night with my heart racing and skipping beats. I found out after the fact that I cannot take that med either. It would be appreciated very much, because many every day medicines that we grow up taking, we cannot take any more and I'm almost positive this will come up for my family, myself, or friends again. Most of them have heart problems of one kind or another.
     Even though Vioxx, a new medication on the market for arthritis, may not have sodium, I did retain a "lot" of fluid and ended up in the hospital with mild CHF, which felt terrible. This is just to share negative experiences in the hopes that no one has to go through the same thing. Also, Vioxx was not prescribed for me for arthritis but from my dentist for pain. Again, I would appreciate it a lot if you can tell me through e-mail or just here, whichever is best for you. Thanks again. Everyone, please take care. God bless, Barb.

Barb L S' July 6 reply to Robin Lynn's July 6, 2000 - Hello everybody, Robin Lynn, I hope you find out what is wrong so you can start some form of treatment and feel better. I have also reread Ophelia's post and I agree with you there. I am also pretty much that way. My family and friends worry enough even when I don't say anything and I am so grateful for those in-between good days that I feel better or even have a burst of energy, as I had for this mini-vacation. I do not want to worry them and I choose to have a relationship with God, with whom I speak every day. I do believe in asking others for help though, when in need. This is because I tried it a different way and it doesn't work; Being strong and not asking. I could be wrong but I don't think she was expressing that either. This disease, when first diagnosed with it, can send you through a loop, especially if illness was very rare in someone's life, as in my case.
     Ophelia, I want to apologize for not reading your post properly. My memory is really slow at times. You said that your infant was 4 months old. I have gone through the same thing and have met many other post-partum women who were either diagnosed with PPCM, DCM, or IDCM. What I am trying to say is to please ask your doctor the question that one gentleman asked you: "Do I have any chance of getting better?" I'm saying this because it's been stressed to me over and over.
     Robin, the trip was beautiful but I am paying the price for it now. The memories we all we cherish forever. You are so right about making these happen. They are so important to my family because we have not been able to make many. As long as I am here, I will never regret taking this trip. Also, thanks for answering that Syndrome X question. It doesn't sound like mine at all. It did ease my mind and I hope you feel better or as they say, as good as it gets.
     Ruthie, my daughter, who is 18 now, had that same procedure done when she was 16 because someone hit our small car with their big truck in a rear-end collision. Those shots are painful no matter what the age or condition. She was healthy until that happened. Everything scared her so much that she is going on 19 and still is afraid to go for her driver's license. Also, I had been 6 months pregnant when hit and that hasn't helped her at all. Take care.
     Toms S, I have been on Lasix, Endecrin, Aldactone and other water pills to boost the Lasix and that has happened with me. My doctor explained that diuretics, if taken for a long time, eventually affect the kidneys. That's why testing is done for me. I also get the feeling that I have to go to the bathroom a lot usually at night and I don't, so it can be frustrating. The only reason I can relate is because either I've been through it, am going through it, my family members are going through it or my CHF specialist tells me. God bless, Barb.

Barb L S' July 6 reply to Cheryl L's July 6, 2000 - Hello everybody, Sally, I think you will like it here a lot. It has been very helpful and has given me a lot. There are endless resources of information here and others who have what you do or are experiencing the same forms of heart disease, and they can help you. I have CHF but as far as your legs hurting, I don't. Someone will answer you soon. Please take care of yourself. Karen and Glen, both of you will be in my prayers.
     Hi Cheryl, when I share anything, I always talk about letting go and letting God. I had just been responding to a post that I agreed with concerning a woman who also has a strong faith. I feel lighter after giving it to God. It's like having a weight lifted off me. Do I not want to worry others? No, they are worried enough. Do I attempt to be strong to lighten their worries? Yes, every single day. It's painful watching your loved ones watch you and I can't do anything to help them except not talk about it all the time.
     I will ask for help if I need it. I know they need me here for our children, family and friends. I would very much like to do a lot more, like walking up the steps or picking up my son, but if it's meant to happen it will, in God's time, not mine. Talking about wanting control, it is very hard to relinquish everything when you are a 37 year old healthy woman of a 2½ week old infant and then wham - you're not. Now I am 39 and I still cannot pick up Ali. That bothers me and hurts more than anything: not being able to pick up my son. Also, the crashing, sleeping and feeling fatigued all the time bothers me. I miss out on a lot. I also feel that if I had not gone through this pain and life lesson I would not have the gratitude that I have just for simple things. I was a very different person when I got sick. Now I don't want to waste a minute. Life is fragile, very fragile.
     In one of my posts, I said that strength comes from being able to ask for help. The good friend I had mentioned in that post is my sister Phyllis. It's practically a daily conversation because she wants to fix everything. My fiance wanted to fix everything and it took a long time for him to realize that he couldn't. My beautiful daughter Shanon wants to fix her mom and still believes she can. Life is not like that, though. As I've said, it is in God's time, not ours. Even though I am Christian, I don't like mixing the two at any heart forum, only because I am very passionate about life and sometimes I get upset. I turned my tears, frustrations, joy and happiness over to God. Do I sometimes take back my will? Yeah, I'm only human, but my faith is what helps me and always brings me to where I need to be. Please take care of yourself and God bless, Barb.

Cheryl L's July 8 reply to Donna Z's July 6, 2000 - Hi Donna, I am in a CHF support group at my local hospital and some of our meetings do become a doom and gloom fest, but for the most part they are enjoyable. We meet the third Tuesday of each month. We have had all of the people come that you mentioned, but we have also had joke month where everyone brought a joke or a funny story and no one wanted to leave that meeting. Because we have so many elderly in my group, we had an officer that deals with gangs, con artists, etc,..., come out. That went over very well. I am 40 and I found out so much that I didn't know. We have alternative medicine one month: chiropractic, yoga and massage therapy. These are just a few ideas. I hope they were of some help. Be blessed, Cheryl.

Karen K, July 8, 2000 - Hi everyone, This is just an update. My husband saw a neurologist today. The tentative diagnosis is MS or ALS but diagnosis will be determined for sure following a battery of tests, including one for Lyme Disease. Prayers still requested, Karen.

Charlotte, July 8, 2000 - Hi, I have been diagnosed with CHF for about 10 months. Does anyone know of a CHF specialist in Oklahoma city or a CHF clinic in that area? I get really scared sometimes. How do you deal with the fear? Do you ever feel really dizzy and nauseated, feel like you're going to pass out and die? I felt better knowing that others have problems with feet hurting. Mine have hurt since I went into the hospiital in September. I went through the asthma, bronchitis, and gallbladder diagnoses too. I was sick for 4 1/2 years then I became nauseated and could not eat. The doctor thought it was gallbladder. Finally in the ER I was diagnosed with CHF. Please write and let me know if you know of a doctor in my area. Thank you.

Nathan M, July 8, 2000 - Hi, I am moving to Houston soon. Any recommendations for a CHF specialist? They should be plentiful. I will live out NW, but work inside the loop. Thanks in advance. Please e-mail me as I don't get to this site often.

Barb L S' July 8 reply to Barbara P J's July 6, 2000 - Hi, I hope everyone is doing ok. I just really wanted to ask Barbara P. J. or anyone else who knows, how are Kris and Sadie doing? This (pregnancy and birth) always affect me because I have gone through a lot with both. So if anyone knows, can you just e-mail me? I will appreciate it very much. God bless, Barb.

Lori P, July 8, 2000 - Hi everyone, I have a question that I don't want to ask my doctor because I'll start crying. My dad always said that when he died, he hoped it wouldn't be choking or drowning or suffocating. That was his biggest fear. Over a year ago when he had bypass surgery, he suffered a stroke and according to the doctors, was without oxygen for 20 minutes, causing brain damage. Eventually he died. Do you think he felt any pain or suffocation? Do you think he suffered? For some reason this has really been bugging me, and has been on my mind. Thank you for your time.

Doug K, July 8, 2000 - Hello all, I just wanted to express my sorrow in hearing of Al Harrelson's passing. Al was a good friend to me, as well as to many others. He will be missed by all who knew him.

Bob for his wife Lynn M, July 8, 2000 - Hello, Lynn's husband Bob, here. She went in for an appointment yesterday and started having a lot of PVCs. They checked her out and determined that her CHF had flared up again. Well, she went about 8 months without a hospital stay so I guess we should count ourselves lucky. She will probably be out in a week or less. I just thought I should let everyone know. Bob.

Gus R's July 8 reply to Charlotte's July 8, 2000 - Hi Charlotte, I don't know anything about this facility but it has a spiffy sounding name. ;-)
The University of Oklahoma Health Sciences Center, 1100 N. Linz, Oklahoma City, OK. 73104 - I couldn't find their Heart Failure Treatment Program on it quickly, so their contact info from another source is copied below. Best wishes, Gus R.

Practice Name: University of Oklahoma Health Sciences Center
Clinic Name: Heart Failure Treatment Program
Who to contact for an appointment: Allyson Luby, RN
P.O. Box 26901, WP3120
Oklahoma City, OK. 73190
Phone: 405-271-2916, Fax: 405-271-2914, E-mail:
Hours: 8:00 AM to 5: 00 PM

Lori P, July 9, 2000 - Hi, Has anyone heard from Susie T lately? I have lost contact with her. We exchanged messages when we were both going through some rough times, and now I can't find her e-mail address. Thanks!

Luc D, July 9, 2000 - Dear friends, I'm very sorry to hear the sad news about Al H. I want to express my sorrow to his family and friends. He was a very good guy who have give us heart patients lots of courage and advice! Like Doug said, he will be missed by all who knew him! I wish my friends here all the best. Let's all pray for our friend Al. Sincerely, Luc Deseins from Belgium.

Ann Penrod, July 9, 2000 - Hi, I am in immediate need of a CHF specialist. I live in southeast Iowa but am willing to travel. Any suggestions? Thank you.

Tom S' July 9 reply to Lori P's July 8, 2000 - Hi Lori, Asking for an "absolute" in the case of your father's death would be impossible for even the best medical authorities to answer. In my early years I was both an orderly and a Navy Corpsman and got to witness a couple dozen deaths first hand, including several who were stroke victims. On several occasions I was the last person the patient saw before they expired. I don't ever recall a struggling or any obvious pain but the most striking thing I remember was the peaceful expression that would come over some of the patients' faces. Some were too far gone medically to show any kind of reaction but just expired in their "sleep." I would say he probably just drifted into the afterlife pretty much unaware of his physical being, and that pain had departed him well before he departed this earth. I would also say that rather than contemplate your father's death perhaps it would be better to think of the happy days in his life. It is obvious that for you to obsess on his death is nonproductive for you. Remember, don't take life too seriously; it isn't permanent.

Dave K's July 9 reply to Tom S' July 9, 2000 - Hi Tom, Exceptionally well said in both your posts, Good ole Dave.

Taavi K, July 9, 2000 - Hi, Last week someone sent me an e-mail about her mother's need for a heart transplant. I have creatively managed to lose the message. Indeed, my entire "hold" basket has managed to disappear. "Cannot find or open file" is what it says. Please resend and I'll reply before losing it this time!

Sy, July 9, 2000 - Hi, Can someone give me feedback on extreme dizziness up to 2 months after defibrillator activaction?

Hinton, July 10, 2000 - Hi, I had CHF 15 months ago, and received a transplant April 4, 1999, in Cincinnati. I think this is a great support place for CHF patients, and I wish I'd known about it at the time. I hope none of you ever have to have a transplant but if you do, know there is hope. My life is almost back to normal. It does take a strong will to live and a strong faith in God.

Barbara Mayne, July 10, 2000 - Hi, Do any of you folks have any comment about windy days? I expected problems on cold, windy or stormy days but seem to notice a difference in how I feel if the days are extremely windy or breezy even with moderate temperatures in the 68-76° range.

Donna Z, July 10, 2000 - Hi Cheryl and Jon, Thanks so much for your input about the CHF group. I'll write them down and make sure we look into them. Great advice Jon, about the medical librarian. Donna.

Tim B's July 10 reply to Sally's July 10, 2000 - Dear Sally, I read your letter with concern only because I hope there is more they can do for you then they did me. I had by-pass 3 times. The first time was in September of 1973 for one bypass, the second in November of 1973 for 3 bypasses, and 3 more came in 1985 when I had 13 blockages. They wanted to do 8 bypasses but got only 5 when I had a massive heart attack, killing 2/3 of my heart muscle.
     I had a very hard time healing up. I went 4 1/2 months with a 4 inch opening at my chest incision and a 3 inch opening on my donor leg, which took 8 months to heal. I don't heal like I should and needed 3 plastic surgeries. Also, with me having diabetes, there is always worry when I undergo surgery. I can't have any more heart surgery because all my veins are completely blocked except the back circumflex artery. This is a good sized artery and it is doing what it has to do, which I say with a grimace because the doctors can't believe I am still alive. I was on the heart transplant list but was taken off when I developed diabetes. I have had 2 angioplasties and each time they gave me a 10% chance of living due to the fact that the artery can collaspe. Time is running out for me also because I have congestive heart failure like everyone here at the forum does, with 18% pumping capacity and getting weaker as time passes.
     I would believe that there is hope for you because there have been people who have had 4 sucessful bypass operations and there is always heart transplant. Diabetes is a problem because of increased healing times and infection risk. Sally, I don't know what your status is spiritually but my walk with the Lord is the only thing thats keeps me going minute to minute, and sometimes seconds. Trust Him, Sally, and He will take your hand and lead you home. Love In Christ, Tim Brownie.

Jon, July 11, 2000 - Hi everyone, I hope to keep the forum updated, as you know, but geocities has been so erratic in FTP access lately that many days the past few weeks, I have had the pages updated and then could not get them onto my server. So please be patient. Jon.

Gerlad F's July 11 reply to Charlotte's July 8, 2000 - Hi, The clinic at Oklahoma Health Center is good and they have a young doctor from India, Dr Chaundra. His name is actually longer but everyone knows who you are talking about. My cardiologist is at the Oklahoma Cardiology Clinic at 10th and Lincoln, which is 4 blocks east and 3 blocks from Oklahoma University Health Sciences Center. My medications have all been changed and my quality of life is better.

Ginger, July 11, 2000 - Hiya's, I was wondering who in here has gotten the "ACE cough" and can tell me how it differs from a regular cough. Sorry to have been missing chats but kids out of school and my brother's chemotherapy have kept me busy. Now I have this stupid cough and feel plain tired. Stay well, ya'll. Hugs and prayers, Ginger.

Mike Joye, July 11, 2000 - Hi, I have DCM and am taking Cozaar and Norvasc (amolodipine), along with Lasix. My EF is 42% and I expeience only mild symptoms. My cardiologist sees no serious problems in my life's quality or longevity. Please let me know if any of you are in the same category. Mike.

Joe S' July 11 reply to Barbara's July 10, 2000 - Hi, I'm glad you mentioned the wind. I go for a 1 1/2 mile walk in the desert almost every afternoon. If there's no wind, there's no problem. If the wind is in my face, I have to stop 3-4 times to catch my breath. I don't know if this is what you were talking about. Joe Stevenson.

Tom S' July 11 reply to Ginger's July 11, 2000 - Hi Ginger, After suffering an ACE induced cough while on Lotensin for nearly 3 years, I finally took it upon myself just to drop taking it and see what happened. Miracles of miracles, the nagging, hacking cough that struck mostly when I laid down at night and would jar me awake throughout the night, finally disappeared. Of course my cardiologist wasn't a bit happy with me and after a severe tongue lashing he promptly prescribed an ARB called Cozaar. Although I have a minor cough with Cozaar, it isn't nearly as bothersome as the one that was apparently induced by Lotensin. Talk to your cardiologist and he probably will switch you to a different inhibitor.

Charlotte H's July 11 reply to Gerald F's July 11, 2000 - Hi, Thank you for your reply. I see Dr. Chohan in Midwest City but would like to try a clinic or CHF specialist. I have my cough back and frothy sputum. I see my doctor tomorrow and hopefully he can do something to help. I can't help but feel how lucky I am because my EF was 40% when I went into the hospital. I see others with much worse and can't imagine how bad they must feel. I felt horrible at 40%!

Lisa M's July 11 reply to Hintin's July 10, 2000 - Hi, Just a quick note to let you know I had a heart transplant a year ago, and I totally agree with you that there is hope. There are gifts given to special people like us. Stay well always. Lisa M.

Robin Lynn's July 11 reply to Ginger's July 11, 2000 - Hi Ginger, My experience with the ACE cough was not very pleasent. Most of the time it started as a mild tickle in my thoat that nearly drove me nuts. I coughed constantly. I know we shouldn't take over the counter cough meds but I did find a cough drop that helped it when I needed it most, like in church. It was Halls spearment drops in the green bag. It relievevd the tickle. Sometimes I would even suck one hard to the top of my mouth so I could go to sleep. I do not reccomend this - you might choke on it. I have a bad habit of clamping my mouth and grinding my teeth so I usually woke up with it still in my mouth or in my hair. ;-)
     I have since been taken off the ACE inhibitor due to my BP being too low and the cough stopped. My docs told me the tickle was not due to the ACE inhibitor but I found proof in a PDR and took it to them. Good luck. If you think you can, try the drops. Another thing that helped was mint tea and other teas such as berry ones. I had a hard time finding them in decaf, though. God bless, Robin Lynn.

Jon, July 11, 2000 - Howdy-doo, Here's an article from AP that may interest anyone with a transplant. The product in question is SangCya Cyclosporine Oral Solution, 100mg/mL, 50 mL bottle. More info on the recall can be found here.

July 11, 2000 - "A generic version of a drug used to prevent organ transplant rejection is being recalled because of an unusual problem: Patients may not absorb enough of the 'SangCya oral solution' if they swallow it with apple juice. The FDA announced the nationwide recall of SangCya - a generic version of liquid cyclosporine - Monday. The brand-name version - Neoral - is not affected; neither are cyclosporine capsules.
     FDA officials urge patients not to change how they take SangCya until contacting their transplant doctor for advice on switching to another cyclosporine product. Patients should not panic. Transplant recipients have cyclosporine levels in their blood checked frequently, so people who regularly took SangCya with apple juice would have had their doses increased if doctors spotted too-low levels, said FDA generic drugs chief Gary Buehler.
     It's the latest controversy over SangCya. Neoral manufacturer Novartis sued the FDA, claiming the government improperly approved the generic drug, and said Monday's recall bolsters that argument. SangCya's instructions suggest patients mix it in apple juice or orange juice to disguise the bad taste but a study found that volunteers who took SangCya mixed in apple juice absorbed about 20 to 30% less of the drug than people absorb when taking Neoral with apple juice. Generic drugs are supposed to be equivalent to their brand-name competitors.
     Manufacturer SangStat Medical Corporation completed the study before the FDA approved SangCya's sale in 1998, but didn't tell the agency about the results until last week. The FDA is examining why. A SangStat spokeswoman said the FDA required only one study showing SangCya was equivalent to Neoral and the company had already submitted a positive study before this one was complete."

Elaine, July 12, 2000 - Hi Everybody, I don't post very often but I am here reading every day. This site has helped me understand so much about IDCM and CHF. My last EF was 20% and my Vo2max was "almost 20," but even with the low numbers, I generally feel pretty good. I do get awfully tired at times but day to day living is okay. My meds are doing their job and my doc now puts me at class 1 up from class 2 CHF. So all has been going well for me, until now.
     Last week I was diagnosed with breast cancer and am seeing a surgeon this Thursday at a breast cancer clininc. The surgeon who did my biopsy has recommended a mastectomy, but I'm not ready to accept that. I am fortunate that I live 15 miles away from a major, on the edge teaching University hospital and clinic that placed high on U.S. News and World Report's "Best Hospitals" list in both heart and cancer categories. However, I'm wondering just how much I can take. I'm scared, mad, down, and just plain exhausted. I guess I just needed to get some of this out. I have a great family and lots of support but I know they can't really understand my feelings.
     I'm so tired of getting poked on and cut on and just having no dignity, it seems, some times. The depression I normally deal with has surprisingly not increased a lot. Life seems so unfair and I'm tired of always having to be so strong. I know I'm probably feeling sorry for myself here but that's just how I feel right now. If anyone has been through something like this, I would appreciate any info you may want to pass along. I have so many fears about going through surgery, general anesthesia, possibly radiation and chemo with my heart problems. My CHF doc suggested I'd be a good candidate for a biventricular pacing study (I have LBBB) but I guess that is out the window now too. Like I said, I am so mad at life. Well, thanks for listening to me vent. I would appreciate any prayers and good thoughts since I do know that my beliefs and faith will in the end get me through all of this. Elaine.

John J, July 12, 2000 - Hi, I was just recently put on a sodium restricted diet. I am diabetic. I was given this web site address by a heart failure nurse. I have found the recipe section but wondered if any kind soul has more low sodium recipes that they are willing to share. Thanks! John.

Janet S' July 12 reply to Mike Joye's July 11, 2000 - Hi Mike, I just read your post. It caught my eye because my latest EF was also 42% by echo. I was diagnosed with idiopathic cardiomyopathy in 1998. The thinking is that it was caused by a virus. My EF at that time was 20% with a recommended transplant by 2 doctors. Fortunately, I got a third opinion by a doctor who is a CHF specialist and on a transplant team. She put me on a regimen of drugs including Coreg which she explained was showing dramatic improvements in people with this condition. I meanwhile had a kidney go bad; not cancer, but no one seems to know why I had to lose it. My own thoughts are that possibly the virus which caused my heart problems also wreaked havoc on a kidney, but who knows? Anyway, I continued to show improvement after the kidney surgery and am now at 42%.
     I also have a lot of fatigue but also have days where I feel as if I've never been sick. I'm getting ready to retire at age 53 and am hopeful that I'll feel a lot better when I can sleep, wake, work, at my own pace in my own time. That is my hope anyway. I hope you continue to do well. While 42% isn't in the normal range, it's still a lot better than 20%! I'll be glad to talk to you on this if you think I can be of any help in sharing experiences. I've learned so much more from Jon's website than I ever have from any of my doctors.

Joy R, July 12, 2000 - Hi, In May my cardiologist upped my digoxin dose from 0.125 to 0.25mg since I wasn't in the theraputic range. He felt it was because I don't absorb well. I am on home IV hyperalimentation for nutrition and IV dobutamine. The last couple of weeks I have felt much worse, with fogginess, confusion, headache, and terrible muscle twitches. The twitches were awful at night and then I would get tachycardia and I would feel like I was going to jump out of my skin. I kept thinging it was the IV hyperalimentation because it is full of electrolytes, so I kept decreasing my dose. It finally got so bad that I was shaking all over. I couldn't think and I had a racing heart. My extremeties were tingling like I had cut off my circulation. I asked my cardiologist for a dig level and he said I didn't need one since I don't absorb well and it probably still wasn't therapeutic. I got so bad I finally called my family doctor and told the nurse how bad it was and that I need an electrolyte check and dig level, and could I get in to see the doctor?
     She ordered the blood test stat and a few hours later I was in the doctor's office. I found out I had a critical level of digoxin. I was also dehydrated from cutting back on my IVs. I had to have a couple of liters of fluid and he ordered Xanax to help with the shaking and twitching. I am having problems with mental alertness but am somewhat better. My family doctor has ordered another dig level for tomorrow and I will see him in the afternoon. He is going to monitor me now to get me back on the right track.
     The question I have is two-fold. How many others have had the symptoms I had when they were dig toxic? Mine were somewhat different except for the confusion. Second question: how many people are followed by their family doctor instead of their cardiologist? I see my cardiologist about every 4 months but if I have a problem in between, I have trouble talking to him or his nurse. If I call my family doc I get to talk to him right away, and usually with me I need to be seen immediately. My sister who is an ER nurse for years told me that cardiologists are so busy with acute patients that the chronic patients tend to fall by the wayside. She advises me to just go with most of the problems to my family doc, who takes care of me immediately.
     How many of you have problems like I do? It would be very hard for me to change cardiologists since in our town all the docs know one another and they don't like to take another doctor's patient. Joy.

Jon's July 12 reply to Joy R's July 12, 2000 - Howdy-doo Joy, I don't mean to belabor the obvious but bear with me on this one. First, I really have to question the kind of advice your sister gave you. Number one, for actual "care" it is critical that you see a cardiologist who is also a CHF specialist. A family doctor is very rarely a wise choice for this. I'm not certain if you're talking about actual care or not, but feel obligated to mention it.
     For watching electrolytes, kidney function, dig levels and the like, a family doctor is fine as long as he has access to reasonable lab facilities locally and understands your situation. My own internist monitors my levels rather than my CHF doc, but it's due to location rather than skill or willingness on his part. You should have these levels checked at least once every 3 months. In your case, I'd suggest even more often due to a more delicate balance from the constant IVs.
     About cardiologists being too busy to take proper care of a chronically ill patient, that's exactly why you need a CHF specialist! They specialize in chronically ill patients!
     About your cardiologist, I would make two comments. Number one: I'd lose this one. He competely ignored your opinion of your own state of health; he trusted his preconceptions more than your mental summation of your own health. That's a very bad sign and bodes ill for you should you become acutely ill quickly in the future. This guy could kill you. Number 2: Good doctors do not mind taking other doctor's former patients. I had a serious falling out with my primary care doc and we split on very bad terms. I had no problem at all finding a new doctor in the same small geographical area. My current doc knows my old doc and couldn't care less why I needed a new doctor. I needed a new doctor and he was taking patients and after examining me and talking to me, he thought he could take good care of me, so that was that. If a doctor will not accept a patient for the reason you mention, he is not a doctor I would want caring for my life anyway! Please read this post and this post for tidbits on the strange way we view doctors in America today. Jon.

Patrick M, July 12, 2000 - Hi, I live in Riverside California. Does anyone know of a CHF specialist in my area, and if Medical or Medicaid will allow someone to go to a CHF specialist instead of a cardiologist? Also which one comes with SSD benefits, Medical or Medicaid?

Jon's July 12 reply to Patrick M's July 12, 2000 - Hiya Patrick, CHF specialists are cardiologists so that won't be a problem. ;-) They're just cardiologists who specialize in treating heart failure patients. After being on SSD for 2 years, you automatically qualify for Medicare. I don't know what state programs you would also qualify for in California.
     To everyone with a CHF specialist, please send me the contact info for them. With help from Gus and others, I have finally gotten the CHF specialist directory for this site under way. However, I really need your help on this one. Just e-mail your doctor's info (name, address, phone number, etc,...) to Thanks, Jon.

Clara, July 12, 2000 - Hi, Thanks again to all who replied to my previous message. I am looking for the name of a CHF specialist in the Houston, Texas area. My husband is currently under the care of a group of cardiologists, one whom is an expert with EP studies, and the group is very reputable. However, I am not sure if any of the group is a CHF specialist. I will find out Monday, July 17, when we go for an appointment. Also, is it ok to use salt substitutes such as potassium chloride? Thanks, Clara.

Mary, July 12, 2000 - Hey ya'll, Great web site! I am a 32 year old mother of a 5 year old and wife of 13 years. I was diagnosed 2/17/99 with DCM. I am currently taking Mavik, Zebeta (beta-blocker), magnesium, Ox-Potassium, furosemide, 3 aspirins a day and numerous vitamins. I have a question for anyone out there. I have PVCs constantly and my cardiologist says the only meds for this will destroy my liver. I can feel my heart beating and therefore feel the skips and flutters. I put off going to bed since that is when I can feel it most. Also, I generally feel awful. Does anyone else feel the flutters and skips often and if so, how do you ignore or cope with it? My cardiologist says just put up with it. Sometimes it makes me cough or grunt out loud. Explain grunting out loud in church services! Any input for my output would be greatly appreciated.

Gerald F's July 12 reply to Ginger's July 11, 2000 - Hi, I had a cough for 6 years and was on several ACE inhibitors. My new cardiologist changed me to Atacand, an ACE II blocker. I've had very few coughs since changing.

Phyllis A's July 12 reply to Tom S' July 6, 2000 - Hello Jon and all, Tom: about Lasix, you should never miss your dose of medication, never. Lasix helps us CHFers void the fluid that builds up and it helps me breathe better. As for the rest of your comment, I agree. Some days I void a lot too and others hardly at all. I mentioned it to my docs and they say it it because if you didn't take in enough fluids that day and your body holds on to it for dear life. I still don't really understand but I know you should not miss a dose.

Phyllis A's July 12 reply to Elaine's July 7, 2000 - Hi Elaine, My name is Phyllis and I had breast cancer too. I was diagnosed with it in 1993 and all of my heart problems started with chemo and radiation. I also have asthma, and the list goes on. I have been in remission for 6 years, praise God and I'm making it. I know in my heart I am cured and my purpose now is to help others get through it too. I can go on and on but instead, you can e-mail me and I will be more than glad to answer any questions you might have. I also had a mastectomy. I thought about lumpectomy but we decided I was to do what would let me live the longest. Please e-mail me at My e-mail address says it all: Phyllis cancer survivor.

Roz' July 13 reply to Joy R's July 12, 2000 - Dear Joy, I was so very sorry to read your last post. I was hoping that no news from you could be interpreted as good news. You have been so brave for so long and an inspiration to so many of us, and you deserve much better medical care than that. You deserve "caring." I am writing just to ask you to read and reread Jon's message to you and if at all possible to act on it. I know I speak for a lot of others when I say that you are in our hearts. Love, Roz.

Lynn M, July 13, 2000 - Hi everyone, I just have to write this to vent. I just got out of the hospital today and feel that it was a total waste of time. The doctor who hospitalized me was the doctor who is in charge of the drug study I'm in. I now think he is more interested in conducting studies than in treating patients. I saw him only once during my hospitalization and that was when he did an echocardiogram for some other study as soon as I was settled in the CCU. I don't know the results of this echo because he never entered the results in the computer or my chart, so not even other doctors could find out the results.
     My reason for contacting him in the first place - which lead to me being hospitalized - was that I was experiencing so much "commotion" in my chest that it was incapacitating me. Unfortunately, "commotion" is the only way I can really describe what I was feeling. My heart was constantly doing flip-flops, I had nausea and a sort of gagging sensation in my throat. As soon as they hooked me up to a heart monitor in the CCU, I immediately saw what was going on. It immediately set off the alarm due to a long run of PVCs while this "commotion" was going on. Despite the fact that I was slightly swollen with distended neck veins, nothing much was done about that except that they added spironolactone to my daily chemical stew. They were mainly interested in my unstable angina and gave me IV nitro and heparin. The only thing they really did for the long runs of PVCs, which continued while I was there, was to give me a tranquilizer called Atavan to take the edge off.
     I finally cornered the intern who was giving me my daily care and told him, "According to the AHA, ventricular arrhythmias are almost omnipresent in heart failure patients. Forty to fifty percent of us die from sudden cardiac death. Now, even though PVCs are common and not worrisome among the general population, wouldn't you agree that constantly having runs of 30-40 PVCs, bigeminies and trigeminies is abnormal?" He agreed. I continued, "Now, considering that my heart is so obviously irritable, I have a hunch that this is a prelude to a more dangerous arrhythmia like v-tach or v-fib. Since the only thing you all have done was to give this middle-aged lady a tranquilizer for her palpitations to quiet her, would you promise me something? If I die of sudden cardiac death, would you please take huge numbers of PVCs seriously if you encounter them in another patient with severe heart failure, as my legacy?" This speech did apparently cause some interest among the attendings and El Jefe on High (the chief of cardiology, who hospitalized me in the first place). He ordered 24-hour Holter monitoring to determine whether I had v-tach, which was a bit ridiculous since I was already hooked up to a heart monitor, which would certainly alarm if I went into v-tach. So, lying there with now 10 leads attached (5 for the heart monitor and 5 for the Holter monitor) and a box sharing my bed, I went into practically continuous PVCs last night for hours (with one run of 56 according to the monitor). It was so bad the Atavan didn't work at all and I asked for morphine, which they gave me by IV. So, at least I slept through the rest of it.
     This morning a nurse told me that she had never seen anyone have so many PVCs and she was sure that they wouldn't send me home today but send me home they did, without even an Atavan prescription or an appointment for further testing or anything! What is really infuriating is that they said they'd consider giving me amiodarone (an antiarrhythmic drug) but they'd have to do a pulmonary function test first. However, such a test hasn't been scheduled. I have come to the conclusion that the doctor in charge of the drug study just doesn't care if I'm incapacitated by these blasted PVCs and just put me in the hospital just so he could do yet another study on me. Thanks for listening. Lynn.

Jon's July 13 reply to Lynn M's July 13, 2000 - Hi Lynn, I'm only going to give opinion, not anything I'd call facts, and I'm only doing so because the medical community makes getting accurate information very frustrating. I personally do not agree with the statement you have quoted before that virtually all CHFers have arrhythmias. I know you read it on a "reputable" web site but I have only seen this once in my own reading in over 4 years, and that was in a set of guidelines dating no later than 1996.
     The highest figure reliably backed up by hard data I have seen for CHFers dying of arrhythmia is 40%. That is open to question in either direction, as far as I can see. The fact is that no one knows how many of us die of arrhythmia for sure. Although it is certainly a much higher percentage than in the general population, I would set the upper ceiling at about 40% and no higher. I say that primarily because CHFers' hearts no longer stay enlarged as long as they used to, due to beta-blockers and better use of ACE inhibitors by doctors in general. It is mainly the stretching of our hearts when they stay enlarged over a period of time that distorts the electrical pathways and causes arrhythmia, so I figure SCD (sudden cardiac death) numbers are coming down these days. Please note that I'm not trying to knock anyone's info sources or start an argument. I have just become aware over several years that a lot of new readers get really scared or intimidated by information we CHF old-timers take for granted, so I want to help certain info be presented it in a balanced light. ;-)
     Unfortunately, you ran into a common medical attitude regarding PVCs. The conventional medical wisdom is, "Live with them - they won't kill you." I have had strong PVCs in large numbers over a period of time, and they may not kill you but they can sure ruin your life. What to do about it? I really don't know; except play musical doctors until you find one who has PVCs himself. He'll understand. <g> That's how I got my migraines taken seriously - I found a doc who got them himself. Jon.

Thelma's July 13 reply to Mary's July 12, 2000 - Dear Mary, Hi! I'm 44 and have had DCM for almost 1 year. However, my flits and flutters of the heart have been going on for years. I think the docs just don't know what to do with me! My meds include Captopril, Zebeta, Lasix and baby aspirin. As far as PVCs (and also PACs), mine tend to get worse towards the end of the day, which probably goes along with being tired although skipped beats are always there. When I have a bad bout of arrhythmia, I get a dull headache and feel terrible. I agree that it's sometimes difficult to go to bed with the ol' heart pounding. What I have found helpful besides Zebeta is doing some relaxation exercises (total body with slow deep breaths) before going to sleep. That will settle down my heart a bit. I will listen to relaxation tapes as I do this. Exercise sometimes helps if I'm not too exhausted. If all else fails and I'm feeling very worried and bothered by the thumps, an anti-anxiety medication can help.
     On an interesting side note and I'm not sure if this is related, this past month I have sought chiropractic care for some upper back pain. Well, I have noticed after 2 weeks of adjustments that I don't feel the palpitations as much as before. They are probably still there, but I just don't feel them as much. Who knows? Just thought I'd pass this along. Take care, Thelma.

Kris Jones, July 13, 2000 - Hi, I just wanted to let everyone know that I am home from the hospital. Everything is ok so far. The doctors said that I am not out of the woods yet and that I still have to be watched for problems for the next 6 months. The baby (Sadie Elizabeth) is doing fine now. She started out with a few problems: she couldn't breathe on her own and was in an incubator for a few days, but I am happy to say that she is doing fine now. I want to thank you all for your prayers and concerns. God bless all of you, you have been a wanderful help to me!

Sox Nelson's July 13 reply to Joy R's July 12, 2000 - Hi Joy, I don't usually reply to any posts but yours upsets me. Listen to Jon rather than your sister and find a new doctor. Whether it is a general cardiologist, a CHF Specialist or a veterinarian, if he doesn't listen to you, fire him quick. If you don't see your cardiologist but 3 times a year, go to another town till you find a good one. Nobody knows the aches and pains in a body better than the person living in it. If a doctor is too busy, he should stop taking patients. Sometimes they get confused as to whether they should make all the money they can or try to help save some lives. I went through 5 cardiologists in 3 years, so I know they are hard to find but it is certainly worth it. Anyway, I hope things work out for you. Good luck and God bless, Sox.

Barbara M's July 13 reply to Joe S' July 11, 2000 - Hi Joe, Living in New England I do very little walking in the desert! It sounds as if reaction to wind is the same, however. We have had great but very windy weather for almost 2 weeks with temps in high 70s for the most part. Being outside definitely brings on a difference in my breathing. I walk inside 30 minutes just about every day. That way at least I don't have to contend with wind and humidity. I also have allergies and this has been quite a season for high counts of pollen and mold. This adds to the problem.

Donna Z's July 13 reply to Mary's July 12, 2000 - Hi Mary, Please do yourself a favor and get a second opinion from a CHF specialist. It never hurts to get second and even third opinions. All doctors are created equal. I worked in the medical profession for years and believe me, there are some really dumb doctors out there who do not have a clue. Sometimes I wondered how the some of them ever got in and out of medical school.

Walter K's July 13 reply to John J's July 12, 2000 - Hi John, I don't know if a web site that sells low-salt entrees, soups, etc,... will be of interest since you asked about recipes. However, this site sells quite a few specialty items including low-salt, low cholesterol foods. For example, they have beef stew with 490mg salt, 12.5oz for $4.50. I assume there is a shipping charge which could be minimized per item by ordering several things. I have no personal experience with them but a friend of mine who does not have CHF or anything, orders regular foods from them so he doesn't have to cook much (his wife is in bad shape). He thinks they are pretty good. Unfortunately, he lives out of town so I haven't gotten samples from him. This outfit was recommended to him by his daughter, who is a nutritionist. Some items are for local distribution, some for national. I intend to order something low-salt from them and was going to post after I tried it so I could comment more on it but your question prompted me to post this incomplete info. Take a look at the site and see what you think.

Kathryn's July 13 reply to Jon's July 12, 2000 - Hi Jon, Thank you for the CHF specialist directory page you have created. This is a great way for all those folks who are seeking professional CHF help in their areas to find a good doctor. So come on everyone, send Jon the information on your doctors! Keep on keepin on! Love, Kathryn.

Tim Brownie, July 13, 2000 - Hi everyone, Recently I was watching the health part of the national news, where they were telling about a new device they could implant next to a failing heart that would help the failing heart do the job it needed to do without a complete transplant. What it does is do what your own heart does, and of course we all know that it is to pump blood. By hooking up this device and incorporating it into the exisisting heart, it is supposed to bring great results like a transplant would but without the severe and sometimes fatal rejection problems. What I need to find out is that if anyone else seen this and by some chance got the name of the hospital and doctors responsible for the implantation of this heart buddy. It is the last chance for me and would certainly be a godsend. On the other hand, I have the misfortune of being diabetic and more than likely would not heal, resultimg in an infection that may be fatal. I had it all written down and have misplaced it. I really need to find out and if any of you would know maybe of some other method of getting this information, any help will greatly be apprerciated. I will continue my never-ending walk with the Lord and seek Him, for He is the all knowing and in my life second to none. Thanks, Tim Brownie.

Cheryl G, July 13, 2000 - Hi, I am 36 and had a heart attack March 29. I thank God for leading me to doctors who believe there are exceptions to the rules. Thanks to God, my husband and my doctors, I'm still here today. I had a PTCA and 2 stents placed in my LAD. I have CAD and CHF. I have an EF of 36%. I'm on 0.25mg digoxin, 2.5mg zestril (my BP is too low for more), and 325mg aspirin in the morning. I take 20mg Zocor (even though my cholesterol is 160 )and 20mg Prilosec at night, and 800mg Motrin 3 times a day for arthrtis. I'll start weaning off 50mg of Lopressor a day this weekend, to start Coreg next week. My heart flutters and does funny little things a few times a day. I feel okay most of the time. My feet and legs have hurt on and off the last 2 months really bad. I have arthritis in my right wrist (which is fused now) and right knee, but it hasn't flared up lately.
     The pain in my feet and legs is much worse. My primary doctor checked for gout and it's not that.he sad it must be some type of arthritis so She gave me Tylenol number 3 for the pain. I don't know if it works yet because the the pain eased off and I didn't take any. I talked to my cardiologist's PA. The pain started after I started taking Zestril on May 20 but she assures me it's not Zestril causing it. My potassium was low in May but my doctor checked it with my last episode of pain and it was fine. This pain is always worse at night. In the morning it's more of a soreness still lingering. There is very little swelling if any. If anybody has any ideas or has been through this, can you give me some advice, please.

Joy R, July 13, 2000 - Hi, It's been a bummer for me lately. I tried to go to cardiac rehab and started having chest pain after a few minutes. It quits after I rest. My last heart cath showed good conorary arteries in 1997; just a diseased heart. I told the nurse who wanted to call the cardiologist that he wouldn't care; just say take a xanax or darvocet and chill out. So he called my family doc but he wasn't in the office and his associate just says go to the ER if it keeps up. He did call the cardiologist and he said to just let the family doc take care of her. Of course I'm still dig-toxic and that is probably what was causing the pain. Nevertheless, isn't it upsetting to know that your cardiologist really doesn't want to take care of you? Now I can't go back to cardiac rehab for awhile until I'm cleared by the doctor, which stinks since even though I went at a snail's pace I was out among people. I'm just venting and would really love it if the cardiologist treated me as a person who has a chance, not just someone who has no hope of recovering. Sorry I'm venting but I am down in spirits and just glad to have Jon's Place to go to when it's all going wrong. Joy.

Joy R's July 13 reply to Jon's July 12, 2000 - Hi Jon, Thanks for the great advice. I do know my body and know when I get in trouble, so it is important for my doctor to listen. It makes you feel really bad to be put off as just a nuisance. I think it would be different if I overbothered doctors but I don't; I only call when something is wrong and I need help immediately. I will start looking for a CHF doc, if there are any around here. In the meantime I do have a good family physican who will help me along until I find someone. Joy.

Krista, July 13, 2000 - Hi there, I recently had a defibrillator and off-label biventricular pacemaker implanted and just wanted to let people know that I have been feeling much better in the 3 weeks since. When I say off-label, I mean a biventricular pacemaker which is composed of approved components and manipulated to perform that function. These types of pacemakers are currently not FDA approved in the US, but are under study. This off-label device allows me to receive the benefits of biventricular pacing without being restricted to the guidelines in the study. My condition had deteriorated to the point that I could not wait for the approved device. Before implantation, I had been retaining fluids to the point where my liver and kidneys were not functioning, I could not walk on level ground without getting out of breath, and some days could not focus well. Of course other methods were used to correct these problems, such as more diuretics and changes in medication, but the pacemaker allows my heart to pump more efficiently and I have much more energy.
     On another note, I am very grateful for my defibrillator because after having it for only 3 weeks, I had an episode of ventricular tachycardia and the defibrillator shocked my heart back into a normal rhythm. This is the first VT I have ever had and I thank the Lord the device was implanted when it was. So please check with your cardiologist to determine if this is something you might require. It wasn't until I received a second opinion on my condition that I learned that having CHF increases your chances of VT. In addition, I have many electrical problems, which increased these odds even more. This is something my first cardiologist never mentioned to me. The pacing part is not for everyone and there is very little data on it currently but I can tell a difference already. Mine is a Medtronic device and was done in Austin by an excellent team, and I know they have done some in Detroit and a few other places as well.

Ben B's July 13 reply to Lynn M's July 13, 2000 - Hi Lynn, I have thousands of PVCs daily: bigeminy, trigeminy, couplets, you name it. I am sure I have more runs of PVCs than normal sinus rhythm. This has been going on for at least 10 years, before I was even aware of any DCM. At that time I was hospitalized for something else and the nurses were freaking out and running in with paddles every so often, although they were never used. Finally the doctor came in and told them to calm down. The difference between me and so many others here is that I don't feel a thing, or maybe I'm just used to them. I've been through Holters and EP studies, but the doctors just say they are probably not life threatening. I would recommend getting an EP study but from what I hear, some of these antiarrhythmic drugs are more dangerous than the arrhythmias themselves, so I'd be very sure I really needed them before trying to force the issue.

Tom S' July 13 reply to Cheryl G's July 13, 2000 - Hi Cheryl, I also have leg and foot pain. I have had it for some time now and can only equate it with the pain you get after running, which causes a buildup of lactic acid in the leg muscles and subsequently, pains and sometimes cramping. I no longer do any running but if I am on my feet for even a few minutes I get those nasty lactic acid style pains in my legs and feet. I've often thought that it could very possibly be the result of the heart's inability to pump all the fluids from the body and thus the removal of any type of acid buildup in the muscle. Usually an aspirin or a Tylenol will temper the pain but very often it's just lying there and letting nature take its course to rid the body of the nasty chemistry.

Jon's July 13 reply to Tom S' July 13, 2000 - Hi Tom and Cheryl, I have had foot and lower leg pain ever since CHF became my constant companion. My CHF doc's head nurse has confirmed to me that too many CHFers get this for it not to be connected. However, my CHF doc refuses to address it and refers me back to my regular doc, which - in my opinion - really stinks. I take non-narcotic painkillers for it at least twice daily: tramadol (Ultram).
     To the point: whenever I do not get enough sleep, my feet hurt terribly from the minute I wake up till the minute I next go to sleep. This points away from lactic acid as far as I can tell since that should be eliminated much more quickly than overnight. However, Tom's comment jolted my tired brain and makes me wonder if other fatigue poisons are accumulating in my system and not being completely cleared while I sleep. Perhaps less than perfect kidney function due to CHF and all the meds makes it even worse. Food for thought, anyway - one more thing to pester my doctors with. <g>. Jon.

Charlotte H's July 13 reply to Joy R's July 13, 2000 - Hi Joy, I went to a doctor for 4 years and was finally hospitalized before they found out I have 3 valves leaking and was in CHF. I went to bronchitis clinics, asthma meds, gallbladder tests, the works. I agree with Jon. You can find a better doctor. I live in a small town but I switched to a doctor in the same clinic I had been going to for 5 years and my new doctor was very apologetic after reading my file. he was very nurturing towards me. I would get really scared and cry when I tried to explain how I felt and my doctor reassured me that I would be well taken well care of and that it was okay to feel this way because of my former treatment. My old doctor would blow me off, saying he didn't hear wheezing and that my lungs sounded fine. His nurse is the one who was alarmed at my condition. Thank God for her.
     Since I have switched, I go to the same office and no one has said anything to me. I get much better care. You have to take a stand. I only wish I would have done it sooner! In my 5 years of seeing this doctor, I saw another doctor only once and she immediately asked me if I had CHF. She said the symptoms I described sounded a lot like it. She checked my chart and no mention of CHF was in there so it wasn't pursued. Just think of all the heartache and misery that could have been saved if I had switched to her then. In April I went to a bronchitis clinic and the doctor there asked me if I had CHF. I told him no. Talk about a wakeup call that I didn't listen to! Well, we live and learn. I stuck with my clueless doctor for about 5 years. Change now and keep changing until you get the care you want and deserve. May God bless and keep you, Charlotte.

Doug K's July 13 reply to Joy R's July 13, 2000 - Hello Joy, You mentioned that you couldn't go back to rehab until your doctor gave his okay. I am curious, are you in an HMO? Because you are right, that sounds very frustrating. You also mentioned that you feel that your doctor looks at you as someone who doesn't have a chance. I looked in the bios but didn't see you listed there so I couldn't learn anything about you there.
     What type of heart disease do you have? What is your EF? Hang in there, most all of us here have had problems and frustrations from heart disease but by the time all of us get our 2¢ worth in, you will get a pretty good idea of your options. That is what has made Jon's site such a great thing. We're not just people out surfing the Net for grins. The people who post here genuinely understand what the poster is going through. So you get reliable concern and help if possible. Best to you and I hope you feel better and find some answers to your concerns.

Roz W, July 13, 2000 - Hi Everybody, I have been struck by the number of CHFers whose discomfort and fear has been compounded by physicians who seem unfeeling, uninformed and disinterested. I am fortunate to have had a rather large number of specialists to choose from and have opted to stay with a cardiologist (and my PCP) who respects my opinions on how I am feeling, and acts accordingly. I was allowed to take most of the pharmaceutical ingredients in our CHF recipes on an "as needed" basis. In my case it made all the difference. I have always reacted strangely to medications however, so listen to Jon and don't try this yourselves without checking with your doctor. Finding the right doctor is worth the expense and trouble. Usually a single visit will let you know if this is someone with whom you communicate, someone you like and feel likes you. I could cry over the stories some of you report. Boy, you really have to be tough these days to survive modern medicine. Hang in there all of you. Love, Roz.

Susan K, July 13, 2000 - Hi, Does anyone have personal experience with having DCM/CHF and using CoQ10? My cardiologist said he's never seen someone who actually has CM be helped by CoQ10 at all.

Jon's July 13 reply to Susan K's July 13, 2000 - Howdy-doo Susan, It helped me. Jon.

Eileen, July 13, 2000 - Hi, I have good news to share. I am 41 and was admitted to the hospital with shortness of breath and chest pain 2 years ago. After a week they sent me home and said it was probably "early stages idiopathic cardiomyopathy." Since then my ejection fraction has dropped from the mid 40s to the 30s. Fatigue had taken over my life. When I got worse in December, they doubled my Cardizem. That helped but what has given me my life back is my new cardiologist and Myovive. I was dubious to say the least, when he said that a liquid supplement might help but I read the research, saw the logic, and took it anyway.
     I can walk, talk, and laugh without coughing or getting short of breath. I can play with my 3 year old daughter and help my 13 year old around the house. He had been doing all the house work because I couldn't bend over without getting short of breath. So ask me or ask your doctor. In combination with medication and a careful exercise routine,me and my doctor expect to see significant improvement of my ejection fraction by Christmas. I live in Tampa, Florida, and am open to questions. I know how desperately I have been looking for that something else I could do.

Joy R's July 14 reply to Doug K's July 13, 2000 - Hi Doug, I guess I should take the time to put my bio in Who's Who since I am a regular here. The reason I can't go back to cardiac rehab until my doctor approves is that I started having chest pain and got too tacky and nauseated; I scared them. I am paying for rehab myself. I'm 52 on SSD and Medicare. I went into heart failure in November of 1997 and just did very poorly with oral meds. I was in respiratory difficulty and forever in the hospital. I was started on IV dobutamine IV and responded enough that I could go home at night and go back to the hospital 5 days a week for 12 hours, which I did for months.
     I finally was approved for home IV therapy and have been on it ever since. My diagnosis was CHF caused by DCM thought to be caused by a virus. The main difference with my CHF is that I have trouble getting blood into my heart (diastolic dysfunction). I get ischemic and the dobutamine helps get more blood into my heart. It does keep me out of respiratory failure. I think most people have trouble with the blood backing up in the heart causing fluid in the lungs but with me it's the opposite. Bloo0d does not want to go into my heart so I have very little to pump, which causes me to have a great deal of respiratory problems, even though my lungs stay clear. My feet get purple and my hands also, unless I constantly move them about. Joy.

Lynn M's July 14 reply to Jon's July 13, 2000 - Hi Jon, I'll have to go back to the AHA web site to see when that scientific statement was dated. It could be the same thing that you read dated 1996. ;-) You do make a very logical case about the possible reduction in arrhythmias over the years due to improvements in treating heart failure itself. I had to laugh when I read your statement about seeing a doctor who has PVCs himself to be taken seriously. I actually did that once and he used his own PVCs as merely an unusual way of blowing me off. Oh well.
     Ben, that's quite a story! As for antiarrhythmic drugs, I was told that they'd put me on amiodarone but first I'd have to have a pulmonary function test because the drug could be potentially toxic to the lungs. However, they haven't scheduled the PFT and don't seem about to. To be honest with you, I hate amiodarone because when I was on it after my V-tach, it caused such a bad taste in my mouth that I stopped eating, then stopped taking the drug. However, these long runs of PVCs are so incapacitating that I'd rather not eat than have the PVCs, which I didn't have while on amiodarone. <g> As for getting an EP study done, I tried but without success so far. Thanks, Lynn M.

Lynn M's July 14 reply to Tim Brownie's July 13, 2000 - Hi Tim, Are you talking about a left ventricular assist device by any chance? Or is this something newer? Lynn M.

Barb L S' July 14 reply to Joy R's July 13, 2000 - Hello everybody, I haven't posted in a few days but Joy, so many of your posts affected me because as a woman I know that feeling of okay, he's my doctor. I'm so sick but he's my doctor, you know? It's wrong. I felt that way at 36-37 years of age and quickly learned that my cardiologist only walked around looking intelligent (I am only speaking for myself and my experiences) but truly wasn't. It only took 2 months to find out that I had to go to a CHF specialist. Oddly enough, that information came from my primary care doctor, who did not feel comfortable doing digoxin levels or any levels. So I think everyone's primary care doctor is different in that respect.
     My dig had been increased from 0.25mg to 0.375mg about a year ago and my CHF doctor is in control of anything and everything. I wondered where you were and how you were, too, so I came here and stayed. Listen, family members care about us but they do that with their "hearts" and not necessarily with the correct info, you know. Listen to Jon and to yourself. If you have pain while at cardiac rehab, stop. Well, that's what I would do. I will talk with you soon, okay? I wanted to let you know that I was thinking of you. Please, listen to your body. It tells us every single time. Take care and God bless, Barb.

Connie R, July 14, 2000 - Hi everyone, I don't post often but just started working on the Disability paperwork. I have sympathized with all the horror stories but just didn't realize how difficult things were. I did have a good experience with my family doctor, who has complete records. He was willing to do the paperwork. He also gave me a name of a lawyer who would help. The doctor said what most of you have said: I'll be turned down the first time. I am also going into the hospital for IV medication, dobutamine I think it's called. The doctor said the stay would only be 2-3 days. I'm not entirely sure what to expect but my daughter assures me that all will be easy and fine, and I trust her judgement. My guess is that it is one of those things you are anxious about until you've done it once. Take care everyone and have a good weekend. Thanks for listening.

Barb L S' July 14 reply to Barbara M's July 13, 2000 - Hello everybody, I'm back for a few minutes today. I have another nasty cold. I seem to catch them whenever someone passes by my home, even if the window's are closed! <lol> I wanted to reply to Barbara M about the windy weather. My dad is 81, has CHF and can take it. I am 39, have CHF and can't take it. He has asmtha, I don't. So I don't know what it is. I see people whenever I'm outside, even in the winter; it's freezing cold and they are walking about, just breathing in that air. I can't go outside unless it's for a doctor's appointment and I really do not understand all of it. The winter weather, yes, but breezy summer air, no. It gets the best of me so I just thought I'd let you know that you're not alone.
     To Cheryl G, I couldn't help but notice that word "Motrin" again since I've just found out that Motrin, Aleve and other NSAIDs can cause someone to retain sodium, even though it does not have sodium in it. This, in turn, can cause someone to have a bad reaction like me and go into CHF. I'm not saying this will happen with you. I wish someone had warned me, though. I used to go to a site and asked the same questions about a medication called Vioxx, a prescription NSAID that put me into mild CHF but I never received any answers. I got very sick after taking it. Maybe it's just something you can bring up with your doctor, since I'm not a doctor. You have Tylenol number 3. They actually changed my medication to that also until I got over my last episode. God bless and take care, Barb.

Doug K's July 14 reply to Joy R's July 14, 2000 - Hello again Joy, Thank you for all the information concerning your situation; It sure helps in understanding your problem. While I am sure that you would like to continue your rehab, if you are scaring them perhaps it would be too dangerous to continue at this particular time. That doesn't mean you should give up and don't let them give up either. What type of activity did the rehab have you doing? You are to be commended for your spirit and tenacity. It seems obvious to me after rereading your earlier post that you definitely should consider finding another doctor. No one needs to feel that their doctor doesn't want to be bothered with them. It's tough enough emotionally dealing with CHF without that concern.
     For what it is worth, I also happen to have diastolic dysfunction with DCM, Lupus suspect and too many other health problems to list here (see my bio). I don't know of too many others with the diastolic problem. It took some time to understand the diastolic dysfunction of heart failure. As you said, if the heart can't get the blood in, it sure can't pump it out either. It explains why I feel so tired (also from the lupus), yet I have a decent EF of around 50%. Unfortunately, I just had an echo and my left ventricle has enlarged from 5cm to 6cm and the muscle wall is also continuing to get thinner. Feel free to e-mail me anytime if you like, and the best to you.

Tom S' July 14 reply to Connie R's July 14, 2000 - Hi Connie, I got to thinking about my 2 successful turns through the SSD process and it made me wonder why exactly I had a relatively easy time of qualifying for benefits. I went back and re-read the government's guidelines for disability, looking for one constant and after careful thought and consideration I think the key word in the whole application process is the word "terminal" as in "terminal illness." It is my belief that if the bottom line is that your illness is expected to result in your death, with no possibility of recovery or treatment that would result in your recovery, then you qualify for full SSD benefits. I don't know what your particular prognosis is but I would assume it is similar to what the rest of us with severe cases have been told. I personally was given a week to a month, then upgraded to 3-5 years. That fact was included in my application both in the first go around with SSD and then again I made sure that was stated in the 3 year review process I underwent about a year ago. Perhaps you need to discuss this point with the physician who is assisting you with your SSD disability claim. Good luck.
Jon's note: Standards for SSD can vary hugely from state to state - one reason for getting an attorney

Linda M's July 15 reply to Doug K's July 14, 2000 - Hi Doug, I also was diagnosed with diastolic dysfunction. I started with an EF of 15% and in CHF. After amost a year of Coreg, my EF was 51% but I couldn't live like that anymore. I could not function. I am now on digoxin for a short time. My EF went to 57%, my heart size is normal and I feel pretty good. In 6 months, I may go on ACE inhibitors. I would like to know what others out there with diastolic dysfunction are taking for meds. Thanks.

Brenda C's July 15 reply to Connie R's July 14, 2000 - Hi Connie, I just received my first disability check at the begining of this month, which was approximately 4 months after I first applied. Granted that I was on SSD for about 3 or 4 years before I was "rehabilitated" and completed my Master's degree. I returned to the work force 7 years ago, however 3 years ago I was diagnosed with CHF after I was admitted into the hospital with CPD (Chronic Pulmonary Disease) and attempted to re-apply for SSD. I was turned down 2 times before I finally gave up and returned to the work force again. As you well know, sometimes putting food on the table is more important than how you feel, especially if you are a single parent.
     Anyway, I couldn't believe that I was approved in such a short length of time in this go round so I expressed my concerns to my family physian, who like yours, went out of his way to help with the paperwork all 3 times. I made the comment about the possibility of me being a lot sicker than I actually thought I was and wondered out loud to him whether or not I would live to see the sun rise the next day. My doctor, who has a very dry sense of humor, stated that the reason I was approved so quickly was because this was an election year and one of the presidential candidates was from my home state. At the time I thought he was only kidding so I just laughed it off. Later on that same day, I just happened to run into the wife of one of our state Senators and relayed what I thought was a joke that my doctor had made. The Senator's wife, however, assured me that my doctor's reasoning was probably right on target because both candidates' platforms going were focused on Medicare and Social Security payments. She went on to say that there were two things that a person didn't want to get caught doing during an election year: Killing someone accidently or on purpose, and selling, manufacturing or using illegal drugs. ;-)
     So hang in there Connie and keep plugging away through all that paperwork. Perhaps you will see the same immediate results I did. Just remember that your monthly SSD payments are less than what your monthly pay used to be. So start clipping those coupons and saving your pennies now because although you might feel rich for awhile, it don't go too far. <g> Good luck and God bless us one and all.

Barb L S, July 15, 2000 - Hi, Does anyone have a moderate to severe memory problem? It seems to be getting worse. My CHF specialist just says that it's my heart. I don't get it. Oxygen deprivation? God bless everybody, Barb.

Donna McGowan, July 15, 2000 - Hi Jon, I have read the posts on this site for several years. I was diagnosed with CHF in March of 1997. I was 47 at the time. I had not worked outside of the home for several years. When I applied for SSD I was told I could only receive SSI because of not being employed for several years. The SSI would depend on what my husband's income was. I received SSI and Medicaid for 3 years. This was a godsend since my husband was a contractor for a company and did not have health insurance. The SSI and Medicaid paid my enormous hospital bill and all my doctor bills and most importantly paid for my monthly prescriptions, which were and still are hundreds of dollars. I was notified a couple of weeks ago that my husband made $2039 more than was allowed so I shouldn't have received benefits from January of 1999 through June of 2000, and needed to pay back $9079. My Medicaid was also cut off. I have an appointment Tuesday, July 18, to see my cardiologist and he will do an echocardiogram, which is several hundred dollars.
     I have called 4 different attorneys listed in the yellow pages that advertise they help with Social Security. When I explain my problem, every one of them have told me they only help to get Social Security Disability and cannot help me. I still have CHF and need medication and doctor's care. Do you have any advice? Finding the right attorney is as scary as finding the right doctor. We are not rich. I'm afraid when I think about facing the future with an illness like I have and not having any means to pay for long-term medical services. Donna.

Jon's July 15 reply to Donna McGowan's July 15, 2000 - Hi Donna, I'm not an expert on anything to do with Disability so I can only offer some suggestions off the top of my head, so to speak. First, please go back and verify for sure that you did not have enough work hours to get SSD in the first place. If you had not worked for "several" years, you still should have qualified if you had a reasonably long work history prior to that. One FAQ states that if you have worked 5 of the last 10 years, paying into SSA those 5 employed years, you have a good chance of qualifying. You will need to obtain a copy of the actual hours requirements from SSA. You may be able to get that info from their web site, but an excellent resource on the subject can also be found here, which may do it for you.
     I know almost nothing about SSI because I didn't qualify for it, so I have no experience with it. I'm sorry but I have no idea how to help you there. I would think the first thing to do is have a sit-down face to face with whoever is in charge of your "case" at SSA locally. Be nice and polite, and get all the information you can about every aspect of your situation from them. Continue looking for an attorney if you believe one can produce concrete results in your favor. SSD attorneys work for a percentage of the first payment. In your case, there is no first payment unless you discover that you did qualify for SSD on the basis of previous work hours. So an attorney may cost you up front and may not be worth the cost unless he specializes in Social Security law and is familar with the issue of overpayment.
     There is a Social Security Programs Operations Manual here that you may find useful. You can access some legal information at places like and please go back to my SSD page since I have listed considerably more resources there lately.
     Unfortunately, as far as I can tell from the official SSI regulations, you were overpaid and are responsible for repayment. On the other hand, I know that there is such a thing as a waiver of overpayment which removes your responsibility to repay the money. I just have absolutely no idea what qualifies you for this or how to get it. I realize I have been pretty much no help at all but I just don't know much about SSI. Maybe others can give you more specific information. Jon.

Tom S' July 15 reply to Barb L S' July 15, 2000 - Memory, Uh lessee, hmmm, I think I forgot what I was gonna write.

Paula, July 15, 2000 - Hi, I have a 2 1/2 year old son Anthony, who has dilated cardiomyopathy and CHF. Does anyone know anything about children taking Coreg and how effective Coreg is in helping this problem. Paula.

Doug K's July 15 reply to Linda M's July 15, 2000 - Hello Linda, It appears that you are on the high road to some recovery! Congradulations. I am sure it has been a struggle. You mention that you were on Coreg, with an EF of 51% yet you didn't feel well. I take it that you stopped Coreg. I have heard from a couple of others who said that Coreg pretty well whacked 'em out. I use Vasotec and a mild diuretic called HCT. Do you still avoid sodium despite the improvements? Do you use CoQ10 and supplements? I'm glad you replied to the post. Good luck and keep in touch.

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

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