The paperwork never ends The Archives
October 1-15, 2000 Archive Index CHFpatients.com

Jon 10-2      sorry
 
Luc D 10-2      where are my posts?
 
Jon's 10-2 reply to Luc D's 10-2      you'll need to play catch-up
 
Donna Z's 10-2 reply to Ben B's 9-30      newspaper article about that trial
 
Jim's 10-2 reply to Patti D's 9-26      kicking the habit
 
Cheryl G's 10-2 reply to Patti D's 9-26      kicking the habit
 
Frank Smith's 10-2 reply to Patti D's 9-26      kicking the habit
 
Bill D 10-2      where did Lee R go?
 
Phyllis A's 10-2 reply to Tonya Dean's 9-30      SSD review results & about flu shots
 
Jim Hall 10-2      seek experiences, advice - HCM & more
 
Beverly C's 10-2 reply to Tonya Dean's 9-30      "abdominal" heart beats questions & more
 
Lyn 10-2      new beta-blocker question
 
Susan Bingham 10-2      MyoVive has really helped me
 
Dee D 10-3      volume and right heart cath questions
 
Jon's 10-3 reply to Dee D's 10-3      volume and right heart cath
 
Tonya Dean 10-3      thank you
 
Kat's 10-3 reply to Laurie A's 9-27      having stuff to do, people to see, places to go!
 
Nancy 10-3      intro, great site, depression
 
Jon 10-3      just a few notes
 
Mary H 10-4      very much improved - going off meds
 
Jon's 10-4 reply to Mary H's 10-4      please get another opinion about stopping meds
 
Janet Pieterse 10-4      seek input for CHF article
 
Dana J 10-4      seek electrophysiologist, Tambacor info, ablation info
 
Tracey C 10-5      thank you, cold medicine question
 
Jon's 10-5 reply to Tracey C's 10-5      over the counter cold medicines
 
John Len's 10-5 reply to Jim's 10-2      kicking the habit
 
Joe S' 10-5 reply to Jon's 10-4      meds policy seems like extortion
 
Rick M's 10-5 reply to Joe S' 10-5      about those meds,...
 
LaCinda 10-5      intro, chest pain, doctors, questions
 
Jon's 10-5 reply to LaCinda's 10-5      a start on your questions
 
Jon 10-5      Jack, Unix questions
 
Rieale's 10-5 reply to Joe S' 10-5      getting prescription refills
 
Phyllis A 10-5      stress bringing on CHF experience
 
John Len's 10-5 reply to Joe S' 10-5      prescription refills
 
Ben B's 10-6 reply to LaCinda's 10-5      the getting-used-to-the-idea phase of illness
 
Joe S' 10-6 reply to Rieale's 10-5      meds, SSD, Medical & insurance questions
 
Thelma 10-6      update, EPS question
 
Jack's 10-6 reply to Jon's 10-5      about them UNIX
 
Jon's 10-6 reply to Jack's 10-6      good to hear from you & more
 
Shirley Valdivia's 10-6 reply to Phyllis A's 10-5      stress & CHF, prayer request
 
Jon 10-7      updating delay & more
 
Debbie H 10-7      saline nasal spray & sodium restriction question
 
Blake 10-7      heart transplant & flu season question
 
Kat H's 10-7 reply to LaCinda's 10-5      coping with CHF out of the starting gate
 
Gus R's 10-9 reply to Blake's 10-7      avoiding infections & more
 
Shirley Valdivia's 10-9 reply to Blake's 10-7      I'm from Oklahoma too
 
Laurie A 10-9      great news after cath!
 
Donald Gazzaniga 10-9      update - good news, low sodium diet & more
 
Jon's 10-9 reply to Debbie H's 10-7      saline nasal spray
 
Lydia Moore 10-9      product that helps me sleep
 
Rick M's 10-9 reply to Blake's 10-7      tips for avoiding colds
 
Jon 10-9      new FAQ page up
 
Ophelia 10-9      don't forget to live
 
Sue L 10-9      questions about waiting for heart transplant
 
Anita's 10-9 reply to Blake's 10-7      dealing with post-transplant stuff
 
Lacinda 10-9      chest pain, painkillers, SOB, docs & more
 
Jon's 10-9 reply to Lacinda's 10-9      chest pain, Tylenol, painkillers, SOB, docs
 
Bill D 10-9      seek input from long time Coreg users
 
Lyn 10-9      putting my medical records online
 
Jon's 10-9 reply to Lyn's 10-9      things to consider
 
Taavi K's 10-10 reply to Blake's 10-7      dealing with post-transplant stuff
 
Roz' 10-10 reply to Lyn's 10-9      medical info
 
Jeanette's 10-10 reply to Lacinda's 10-9      staying stable over time with low EF
 
Jill M's 10-10 reply to Bill D's 10-9      long term Coreg use experience
 
Karen K's 10-11 reply to Roz' 10-10      keeping meds info on you
 
Jon 10-11      re-routing some posts
 
Beverly C's 10-11 reply to Rick M's 10-9      not shaking hands to avoid germs
 
Robin B 10-11      thank you & more
 
Ruthie A 10-11      colds & flu germs, update - not so good
 
Pat L's 10-11 reply to Bill D's 10-9      long-term Coreg experience
 
Rick M's 10-12 reply to Beverly C's 10-11      wearing gloves 'round here
 
Phyllis A's 10-12 reply to Ruthie A's 10-11      hang in there
 
Janice M's 10-12 reply to Ruthie A's 10-11      hang in there
 
Pete E's 10-12 reply to Pat L's 10-11      Coreg, camping trip, update & more
 
Joe S' 10-12 reply to Beverly C's 10-11      not shaking hands, dealing with germs
 
Walter K 10-12      pulse, pacemaker questions
 
Ben B's 10-12 reply to Pete E's 10-12      congratulations on your trip
 
Jean C's 10-12 reply to Ruthie A's 10-11      our prayers are with you
 
Marcos 10-13      newly diagnosed, seek advice & support
 
Bill D's 10-13 reply to Harold W's 10-12      trying to contact Lee R
 
Tom B's 10-14 reply to Marcos' 10-13      coping with heart failure
 
Rieale 10-14      update, InSynch participation, ICD questions & more
 
Jeff M's 10-14 reply to Dee D's 10-3      right heart cath experience
 
Jeff M 10-14      update after getting heart
 
Jim T 10-14      update, too old for transplant
 
Kat H's 10-14 reply to Jeff M's 10-14      also questions about BP, pacemakers & more


Jon, October 2, 2000 - Hi everyone, Sorry I forgot to post that I was taking Sundays off from now on. My mind must have been wandering again. I do non-heart stuff on Sundays now, like putting up pages my wife has written for her site. Jon.


Luc D, October 2, 2000 - Hi, It's Luc Deseins here again. Why are my messages not on this site? Take care, and greetings from Luc to you all. luc.deseins@planetinternet.be


Jon's October 2 reply to Luc D's October 2, 2000 - Hi Luc, You'll need to read some previous posts, like this one and this one. Jon.


Donna Z's October 2 reply to Ben B's September 30, 2000 - Hi Ben, One article about what you mentioned was in the Philadelphia Inquirer. You can read it by going to www.philly.com and going to the health section. It is being done at Temple University Hospital. There are also a lot more procedures they are doing, Donna. dzak@worldnet.att.net


Jim's October 2 reply to Patti's September 26, 2000 - Hi Patti, I was a 2-3 pack a day smoker for practically all my life. There were a few times I quit successfully but always went back within a year or two. The last time was the most successful. I used the patch and Zyban both. I really think the patch was the most helpful, although Zyban did help take the edge off withdrawal. It was the easiest I ever did it. The only thing to watch out for is when you discontinue the patch you will again start getting urges. I found that I could resist them because I had not smoked for 12 weeks. I am not past 6 months and still get urges occasionally but they don't last long at all and therefore are easier to resist. Good luck, Jim! clocker131@home.com


Cheryl G's October 2 reply to Patti's September 26, 2000 - Hi Patti, I am an ex-smoker. I'm 36 years old and I smoked 1-2 packs a day depending on how my day was going. I smoked for 19 years. My quit date was chosen for me: March 29, 2000. That was the day of my last cigarette and a very bad heart attack. My doctor tells me I could not have survived had I not gotten to the hospital as early as I did. I spent my first week without nicotine in the hospital. I couldn't tell you about withdrawals since I didn't have them or at least I didn't know it if I did. Lying still and not being able to move my legs for 3 days because of an intraortic balloon pump and cath was torture. Seeing my kids so scared when they looked at me was also torture. I don't think withdrawals could have been worse than what I went through.
     I had to deal with breaking the habits that went along with smoking. I put peppermint and gum in every room in my house and in the ashtrays of our vehicles. If the urge came for a smoke, I took a piece of candy instead. I prayed for the strength to do it. I took it one day at a time and I've made it 6 months now. I know I will never smoke again. I have no doubts cigarettes caused me to be in the shape I'm in today. You can do it! It is not as bad as what our minds make us think it's going to be. Do it for family, do it for your health, but most of all do it for yourself. You won't regret it. My thoughts and prayers are with you. Cheryl. Garciaa@prodigy.net


Frank Smith's October 2 reply to Patti's September 26, 2000 - Dear Patti, I started smoking at age 15 and finally stopped about 4-5 years ago, I think. I'm now 67 and my smoking gave me CAD, which gave me an MI, which gave me a CABG x 5 vessels, which led to cardiomyopathy, which led to CHF. I finally realized that my brain (mental toughness and willpower) could get the job done in spite of my addiction. Since each of us is unique unto ourselves, we must get in touch with our psyche, which is who we really are and then the so-called physical addiction can be eliminated. It is one thing to tell ourselves that we really want to do something, which suggests that a bare-bones committment is the key to success. Please don't let the poison in cigarettes destroy your physical well being. Ask your family and friends to help, and remind yourself that you are not invincible. Good luck, God bless, and we are pulling for you to win. Later, Frank. marquasmith@lycos.com


Bill D, October 2, 2000 - Hi, Does anyone know what's happened to Lee Roush? Her web site hasn't been used after July. I e-mailed her at LeeRoush@aol.com but she hasn't replied. I'm worried about her. She was one of the original members of Jon's Place. She had an ICD implanted and Jon encouraged her to put up a web site. I think she lives somewhere in New Jersey but I can't find her. Bill D. billdog@gate.net


Phyllis A's October 2 reply to Tonya Dean's September 30, 2000 - Hi Jon and Friends, I had my review for SSD on Friday, 9/29. After he looked over my records and spoke with me about my symptoms and all my meds, he said to me, "Why are you here?" I told him I would like to know also. With Hypertrophic cardiomyopathy, CHF, asthma, in remission from breast cancer, hypertension etc,..., I was led to believe that we cannot work, cannot hold down a job because these conditions are chronic and ongoing. Well anyway, he said we would go through the motions and fill out papers but he didn't understand why they would even bother to review someone like me.
     Tonya, I had a pneumonia shot and flu shot last year and had no side effects. I am waiting to get a flu shot but was told by my doc there is a shortage of the vaccine. God bless. phylcasurv@msn.com


Jim Hall, October 2, 2000 - Hi and Thanks for having this site. It is very comforting to visit and read about people who have the same problems I have. I have hypertropic cardiomyopothy diagnosed in 1975 as IHSS. Until 4 years ago, I had been able to live a fairly normal life with medications. About 3½ years ago I started having a-fib attacks with frequent visits to the hospital. After several cardioversions my cardiologist implanted a dual chamber pacemaker and performed an oblation leaving me pacemaker dependent. Two weeks later I went into CHF and was in the hospital again for 4 days. At that time my meds were switched to amiodorone, Bumex, potassium,and I continued on Lopressor and Synthroid (due to a thyroid problem). This helped, but still limited me physically.
     Within the past 6 months it seems I've been steadily going downhill. I quickly get short of breath and am constantly tired, with no energy. I have developed a cough that progresses until I feel like I'm choking and often throw up. I went back to my cardiologist and questioned the amiodorone as being part of my coughing problem. I've already had cornea trouble attributed to this medication. He took me off Lopressor and switched the amiodorone to sotolol (Betapace). The cardiologist referred me to a pulmonary specialist to check for toxicity. He also ordered a stress test. I've had chemical stress tests but this was my first physical test. There were no pulmonary problems, just heart problems. In fact, my heart rate did not increase at all during the test. This worried the doctors since the pacemaker is designed to fluctuate. The pacemaker checked out okay. Last Friday I spoke with my cardiologist, who informed me there's nothing more he can do. Upon my next visit, he will possibly refer me to Shands Hospital in Gainesville, Florida to be tested for eligibility for heart transplant. My concern is wanting to get a second opinion. Is anyone having the same kind of problems? If so, could I get some feedback? I'm a little apprehensive, to say the least. Thank you, Jim Hall, Jacksonville, Florida. jimhall@alltel.net


Beverly C's October 2 reply to Tonya Dean's September 30, 2000 - Hi Tonya, I was in bad shape when I got my pneumonia shot and it had no side effects for me. Also, no one answered the question about strong abdominal heart beats. I have also brought this up to my doc and he said, "I don't know," and blew it off. It is not always there but sometimes you can see my pulse move my abdomen right below where my bra stops (actually my midriff area). Does anyone else have this or know what it could be?
     I am going in for my third heart cath next week. The first was in January of 2000 and found 95% blockage. the second was in April and found re-blockage 90% same LAD artery. I am now having symptoms again (angina and SOB) and don't have much hope for a different outcome. I just hope they can fix it again with angioplasty. I wanted to get a laser or some different treatment but the doc says the data they have is not showing laser to be any more effective than angioplasty. I'm going to ask for frequent flyer miles. Beverly C. macmember@earthlink.net


Lyn, October 2, 2000 - Hi, I read an article about positive results with canedilol, a beta-blocker. Does anybody out there have any experience with this med? relpl@c4.com


Susan Bingham, October 2, 2000 - Hi everyone, I have been on MyoVive since July 1. It has taken my life quality from good to great, and has helped me overcome illness greatly. I highly recommend it to anyone who has yet to try it. Good luck! gardener@tca.net


Dee D, October 3, 2000 - Hi, My heart failure specialist and my cardiologist have just informed me that I need a right heart catheterization because they are continuously puzzled by my volume status. Does this (volume status) mean my Vo2max measurements (which in 1999 was 19 and in 2000 was 16) or does it mean something entirely different? If so, what? Do you feel a Swan-Ganz is really necessary for this information? I have left heart failure and have read that right heart catheterization is more dangerous for people with left heart failure. Thank you for your time. This site is truly wonderfuly and I am so thankful it exists. deedurham@webtv.net


Jon's October 3 reply to Dee D's October 3, 2000 - Hi Dee, I'm no doctor but volume refers to the amount of fluid in your body. Our volume can get depleted from too much diuretic or a too-severe fluid intake restriction. Our volume can get too high when our hearts and kidneys are too weak to do their job and fluid accumulates in our tissues, instead of staying in our blood vessels like good little fluid. <g> CHF specialists often refer to us CHFers as slightly "wet" if our volume is a bit high and "dry" if volume is a bit low. Too low volume = dehydration.
     I'm no doctor but I question the value of a Swan-Ganz catheterization unless the information to be obtained is considered absolutely crucial and cannot be obtained in any other way. It is used to measure pulmonary pressures. Swan-Ganz is especially used for people with suspected pulmonary hypertension, right-sided heart failure, or heart transplant. I would question my doctor at length about the necessity for the procedure before accepting it. If he presented a logical and convincing case that the info to be gained was really needed for my treatment and could not be obtained in any other fashion, I'd have it. Otherwise, I would not. That's just my personal opinion, not some accepted medical theory. (I have had one Swan-Ganz cath myself) Jon.


Tonya Dean, October 3, 2000 - Hi, I got my pneumonia shot today and so far, so good. I just wanted to thank all of you who took the time to post a response or sent me an e-mail. They all really helped ease my mind. Thanks, Tonya. rntdean@jcn.net


Kat's October 3 reply to Laurie A's September 27, 2000 - Dear Laurie, I laughed appreciatively when I read your comment, "I have too much stuff to do,...," This is exactly what I say all the time and my husband says he always repeats that to people when they ask how I am doing. When I first had to stop working and was at home all the time, I was really at loose ends. I just wasn't used to that. At first I made a simple schedule for myself and that was back when I could still do some chores around the house, even tote laundry up the stairs. But I had to try, had to put forth some honest effort. After spending weeks modifying that simple schedule and finding more things to do, I realized something important. I found that my outlook improved all by itself because I was focusing on so many other things instead. Eventually, it got to the point where "I had too much stuff to do." So of course I was going to have to be around for quite a long, long time. It is a lot of stuff! Let's both just keep it up. ;-) helmicks@intelos.net


Nancy, October 3, 2000 - Hi, I am writing to say all of the information I just read has been very informative. I was diagnosed with CHF and dilated cardiomyopathy in February of 1998. My daughter got on this site for info for me but I didn't have a computer to access it. She recently gave me her computer and I found this site again. My heart is in great shape right now, but at one time was the size of a volleyball. Everything has gone well for me concerning medical care, payments from the government and getting on disability. My biggest problem at this time is dealing with depression. I am medicated for the CHF, cardiomyopathy, non-insulin dependent diabetes, and the depression, and I quit smoking cold turkey too. That's a very short version of my story. Thanks for this site. tourbus@cheerful.com


Jon, October 3, 2000 - Hi everyone, Just a few notes: This host allows me far more power than I have had before but I have to know more to use it. If something on the site gets funky, please let me know - I may be able to fix it just by undoing something new that I tried. <g> I am leaving the message board pages larger than before because it does not hurt me money-wise to do so now. If this is a problem for you and your pooter, please let me know and I'll go back to trimming it back more often. Finally, I am altering pages here and there before jumping back into the mailing list info stuff, so if a "new" page doesn't work right for you, please let me know. All changes can be undone, after all. Finally, don't give up on me, I am about to start updating the CHF docs listing again. Each listing takes about 20-30 minutes so it is slow going, but it will get done! Jon.


Mary H, October 4, 2000 - Hi, I recently got back from the cardiologist with apparent great news. He performed an echo and seems to believe that my heart is on the lower end of normal. This is wonderful since I was being treated for DCM and CHF since February of 1999. My meds are being tapered off and the plan is to eliminate them. I revisit Dr. Maloof in a month to check on blood pressure and overall effects of stopping the medicine. He told me my flutters and PVCs would probably increase without the medicine. I counted at least 10 per hour while I was on the monitors, waiting for the doctor to enter the room. If this is true, I am not looking forward to increased thumps and skips. I have felt so much better with reduced medicine, but I only hope it isn't temporary. I am still hesitate to believe that everything is as okay as he says. He thought maybe my team of doctors at the other clinic may have overreacted last year. I'll keep ya'll posted as time continues. God bless and may everyone enjoy the good days. Mary Hickerson. dwighth@tnweb.com


Jon's October 4 reply to Mary H's October 4, 2000 - Hi Mary, The news that your heart function is near-normal is great! However, I am guessing that your new cardiologist is not a heart failure specialist. No CHF specialist would go the route he is taking you. You should be kept on an ACE inhibitor for life, at the very least. This is standard medical practice among CHF specialists for patients who achieve near-normal heart function over time, rather than abruptly. I can put you in contact with my own CHF doc if you want to verify how a greatly improved patient should be properly handled. That "over reaction" by your other docs is why your heart has improved to where it is now. Readers here have seen real people taken off meds when they got heart function back (Dallas for one - see bios). Almost every one went back into serious CHF after awhile and never regained all that they lost due to the bad medical decision to remove them from all their heart meds. Please get another opinion from a bona fide heart failure specialist. Jon.


Janet Pieterse, October 4, 2000 - Hello everyone, I am a writer researching congestive heart failure for a potential article. The subject seems to get very little research and I want to find out why, as well the impact the lack of research has on patients. If any of you are willing to share your experiences with me, please email me directly. I'd like to know a little bit about you, how long you've known about your heart problem and what effect it has had on your life. Also, have you had any problems with healthcare or treatment, or are you generally satisfied with your progress and prognosis? Thanks to everyone in advance, and also to Jon for allowing this post. Janet Pieterse, South Africa. cyberjanet@yahoo.com


Dana J, October 4, 2000 - Hello again everyone, I have a few more questions that I hope someone can help me with. I have a tendancy to build massive scar tissue and my cardiologist told me that he didn't have an answer on whether or not ablation would cause me any significant problems in the long run. We agreed that we wouldn't go that route unless absolutely necessary. I had the Electrophysiology Study performed Monday. I woke up in my room after 8 hours in the cath lab to find that he had performed massive ablation and had gone in not only my right leg, but my left leg and right side of my neck as well. He basically told me that he doesn't believe that the procedure helped.
     He wants me to start taking Tambacor but I've heard that there are really bad side affects from the drug. My questions are: Does anyone know anything about the after effects of ablation - scar tissue buildup, etc,... Also, can anyone tell me anything about Tambacor? I have also had really bad achy pains in my right arm, all the way down to my fingers since the procedure. Did anyone else have this problem? My cardiologist said another ablation may help but I don't want to do it again. Can anyone recommend an excellent electrophysiologist? I am willing to travel to get an honest, correct opinion. Thanks for any information! Dana. danajj2@aol.com


Tracey C, October 5, 2000 - Hi everyone, First, thanks to all for the "stomach pulse" responses. I'm glad to know I'm not alone. Second, I'm getting my first cold since diagnosis and have no idea what I can take for relief. My doctor is on vacation (of course). I am on Zestril, Coreg, Lanoxin and Xanax. Any recommendations would be most appreciated. Please tell me I can use nasal spray. Thanks so much and God bless, Tracey. nuttytandt@aol.com


Jon's October 5 reply to Tracey C's October 5, 2000 - Hi Tracey, Decongestants of any kind are not allowed. Any other over the counter medication must be okayed by your CHF specialist, not your regular doctor. The only nasal spray you should try on your own is a simple saline solution that just keeps things moist. "Cold remedies" of any kind almost always speed up the heart rate and can trigger arrhythmia in a weak heart. Please, please ask your doctor first before taking anything over the counter. Jon.


John Len's October 5 reply to Jim's October 2, 2000 - Hi Jim, I was a cold turkey quitter as I posted earlier. You know something? The urge to smoke did come back, but only for a few minutes. The longer I went, the longer between the urges, and they were easier to ignore and would go away. Five or six years out, one day my wife asked me to hold her cigarette for her. All of a sudden I found myself sucking on the thing. She got her cigarette right back, fast. That was 25 or 30 years ago. Another thought: When I was in the Navy overseas, I was buying cigarettes for $1.10 a carton. Nowadays they cost what? $2 or $3 a pack or more? a_lenny6@hotmail.com


Joe S' October 5 reply to Jon's October 4, 2000 - Hi, I don't know if anyone else has this problem, but when I was first diagnosed with CHF, my doc told me I had to take my meds for the rest of my life. Yet several times when I went to get a refill, I was told I had to make another doctor's appointment to the usual tune of over a hundred dollars. This almost seems like extortion. If I don't pay them their money, they will cut me off from my meds. If it wasn't for Rick Martel about a year ago, I would have been out of potassium for a month. Any suggestions on this? Joe S. jes@stevensonlighting.com
 
Jon's note: Tell your doctor how you feel. Watch him squirm or rationally explain why, whichever ;-)


Rick M's October 5 reply to Joe S' October 5, 2000 - Hi Joe, What you have to do is just get older! Once you're on Medicare, your doctors make less money per visit so they just load you up with meds - at your expense - and don't want to see you very often. Don't worry, Al Gore will provide you with dog-strength prescription drugs that will cost you practically nothing, after the first $3000 dollars. rearadml@iu.net


LaCinda, October 5, 2000 - Hi, I just found this site and it is such a relief to know there are others suffering with cardiomyopathy. I am 31 and was diagnosed this past January. My EF has remained at 20% since then. I know it is getting past the time that I will have a chance to recover on my own. I will go to UPMC in Pittsburgh in November to be re-evaluated for heart transplant. The thing that really bothers me is that I get a different opinion from each doctor. Some say I will live, some say I won't.
     The chest pains are so scary. My arteries are not blocked so they think my chest pains are from anxiety. Well, I know they are real. Has anyone else had such chest pains? I am on Zestril, aspirin, Coreg, Synthroid, Bumex, K-Dur, Xanax, Zocor, Allegra, Ultram, Vicodin ES and Prozac. I am so tired of taking all the pills! I am also afraid that if my EF won't go up if it hasn't by now. I guess I have a lot of questions and sometimes think my doctors don't adequately answer them. They either scare me or take it too lightly.
     I am still smoking too. I have to quit, I know. Since being diagnosed, it seems I am smoking more from the stress of all this. If I could wish for one thing, I wish I had my energy back. I am so tired all the time. I just hate it. Well, thank you for this site and I will check back often for more helpful input. Ldearmitt1215@cs.com


Jon's October 5 reply to LaCinda's October 5, 2000 - Hi LaCinda, I have clear arteries and get chest pain also. This is not common but happens in enough of us that it is not anything to get really paranoid about. I suggest that if they are giving you pain killers for your chest pain that you ask for nitro tabs instead. They work a lot better if your chest pain comes from temporarily restricted blood flow. Anyhow, they work for me. Although CHF specialists sometimes disagree, they are far more reliable to treat you properly than a regular cardiologist or other type of doctor. Be sure to get one if you can. Smoking defeats your meds by raising your heart rate, literally wearing out your heart much more quickly. Quitting is tough (I smoked for 20 years) but it is possible! Jon.


Jon, October 5, 2000 - Hi everyone, Has anyone heard from Jack since his surgery? Also, does anyone know where I can get info on obtaining a legal copy of the Unix operating system? Jon.


Rieale's October 5 reply to Joe S' October 5, 2000 - Hi Joe, Ask your doctor to write your prescriptions for longer periods of time. Recently, mine wrote prescriptions to be refilled until 7/01/2001. If you are stable on your meds, they probably won't change much and if you aren't, then you should be seeing your doctor more often anyway. For many prescription plans, prescriptions must be written for a certain amount of time. I don't see why your doctor couldn't accomodate your needs since so many are accomodating to insurance companies. Another suggestion is to establish a relationship with his or her secretary. They will be more willing to get those prescriptions to you without you having to come in for an office visit. Another suggestion is to visit a free clinic or low-income facility where you don't really need their advice, but their signature. Make it clear to them that you will follow your specialist's recommendation but that you can't afford the outrageous visit price. Finally, let your doctor know what is going on with you. If he isn't willing to be more helpful, maybe you need a doctor who is out for your best wishes instead of your pocketbook. Rieale@aol.com


Phyllis A, October 5, 2000 - Hello Friends, I have been under a lot of stress lately with my dad being ill, and going back and forth to hospital with him, trying to help my mom as much as I can since I'm the only sibling not working now. Wednesday morning in the wee hours I was awakened out out of my sleep, sat upright in bed with shortness of breath and chest tightness with a little pain. I woke my husband also. He asked was I alright and I said I'd be alright, just let me rest. I felt better, but stayed inside all day to rest - his and my suggestion. He called during the day to see how I felt and I told him ok but still having tightness. An hour or so later I called him to go to the hospital. I didn't feel like I needed an ambulance. In the ER I went through the usual routine. The bottom line is that they gave me nitro under my tongue, oxygen, and IV diuretics, called in my cardiologist and he said from blood work and x-ray it looked like a fluid buildup. They were to admit me at first but then decided I could go home. Stress does play a major role in CHF. phylcasurv@msn.com


John Len's October 5 reply to Joe S' October 5, 2000 - Hi Joe, One way I avoid repeat doctor visits just to renew a prescription is to call his office and get him or his nurse to call in the renewal prescription to the pharmacy. a_lenny6@hotmail.com


Ben B's October 6 reply to LaCinda's October 5, 2000 - Hi, Like I tell almost everybody who is new and posts here, you really need to relax. As far as I am concerned you are still newly diagnosed and there is plenty of time for your EF to go up. I read so many people here who get diagnosed and sort of freak out, experiencing every symptom, thinking all sorts of dire things. People who had never been sick before imagine every disease known to man. Many of them eventually have their EFs go up, start feeling better and then we never hear from them again, except when they drop by every so often. Since you are living, I guess the doctors predicting death are wrong. Any doctor who tries to pinpoint longevity needs to turn in his crystal ball. These guys are quacks. Please, get stabilized in your treatment and relax. One thing is certain, you've got to stop smoking, but I guess you know that. Good luck. bdbrinkman@juno.com


Joe S' October 6 reply to Rieale's October 5, 2000 - Hi Rieale, It's really weird about the meds. On my last visit after an echo they told me I was almost cured. My arteries were clear, my cholesterol was down and my CHF was in remisssion. Then they scheduled me to go to UC Davis for more tests. If I am almost well and only have a bad heart murmer, why do they insist on more tests and deny me my meds? Becasuse of the bad murmer, my heart will never work right and I still have to take diuretics, potassium and have a low sodium diet, or I blow up like a balloon.
     At least one thing is ok - I am getting Medicare in 2 months. Another thing going wrong though, is I am coming into a moderate inheritance next week and they are cutting my wife and I off Medical. Does anyone have any ideas on insurance for her? A very intersting fact that many of you may not know is that SSD is not affected by inheritance or interest money, only earned income. I can also earn $760 per month on my dot.com business and my SSD still won't be affected. After the $760, the only thing that happens is I will have to pay income tax on part of my SSD. I thought it was great that the Social Security guy I talked with didn't want to know my name or Social Security number because he said it might get me in trouble with them if he found I was doing something wrong. He seemed to know all about my case when I told him I was getting my check on the second Wednesday of the month. Go figure, Joe S. jes@stevensonlighting.com


Thelma, October 6, 2000 - Hi, I just wanted to update the board. I was so nervous a few weeks ago about my EP study. Well, I survived the procedure yesterday, after 6 sticks and 3 catheters, and it looks like my cardiologist is not going to recommend an AICD at this point. He says he couldn't get my heart stimulated into a serious arrhythmia. Of course in the same breath he tells me the procedure isn't 100% reliable. My question is, when the docs are in there, why don't they go ahead and get some hemodynamic readings? Did anyone else get any measurements when they had an EP study? My cardiologist says he wasn't set up to do that. I suppose that would have meant another catheter. Just curious. Anyway, I'm so thankful for some good news. Take care, Thelma. Tcull@prodigy.net


Jack's October 6 reply to Jon's October 5, 2000 - Yo Jon, I'm back. I'm slow and I'm wishing the 3 weeks would pass quickly so I can go in for the second part of the surgery. As for the UNIX system, well that is where they use these specially designed guys to act as guards for the girls in the harem. The call the guards UNIX. maddjak@hotmail.com


Jon's October 6 reply to Jack's October 6, 2000 - Howdy-doo Jackster, Good to hear from you! Surgery in series? Couldn't they hook you up in parallel and do it all at once? ;-) To everyone, thanks for your help! I'm all fixed up as far as UNIX goes, I think. Jon.


Shirley Valdivia's October 6 reply to Phyllis A's October 5, 2000 - Hi Phyllis, I have always wondered if stress does play some kind of role in CHF. I have been under a lot of stress with my daughter who is 32 years old. She has never been married but has two children 16 months apart. She had her first child at 30 years old. Anyway, she is involved with an abusive man right now who is the father of her youngest. I am so worried about the welfare of my oldest granddaughter, who is 20 months old. I would like to ask Jon's Place family to please pray that my daughter will see him for what he is and get rid of him, before something bad happens. All this stress has made me feel worse. Has anyone else had problems with their health because of stress? shirleyv@cwis.net


Jon, October 7, 2000 - Hi everyone, My web server had a security problem Friday morning and I have been unable to update any pages since then. This is just to let you know why the delay - whenever I can upload to my pages and you get to read this.
     Also, I have just about done all I have time to do about getting my pages listed in search engines - namely, nothing. <g> So if you especially like any particular page on my site, feel free to submit it to any search engines you like to use. There's usually a link or button at each search engine named "Add Url" or "Suggest a Site" or something like that. You don't really need to give a description or anything - just the Url. My pages are internally set up to automatically provide them with a page description and title, copyright, blah, blah, blah, whenever they index the page. Jon.


Debbie H, October 7, 2000 - Hi Jon, I found your site a couple of months ago and have been most thankful for the information that you have put together for those of us with CHF. It is by far the most useful site I have found. This is my first time posting, although I read the messages almost every day. I have a question about your suggesting that Tracey C use a saline nasal spray for her cold. Since most of us are on a severely reduced sodium diet, wouldn't the sodium from the saline nasal spray be bad for us? After all, there is no way to spray something in your nose without some of it making its way into your mouth and consequently into your stomach. Or would the amount ingested be negligible? I have not caught a cold since I was diagnosed with CHF last January (fortunately) but I would like to know what I can use since I'm sure that I will catch one sooner or later. Thanks again for having such a great site. It has really helped me tremendously! Debbie H. heizerdd@bellsouth.net


Blake, October 7, 2000 - Hi, I just recently had a heart transplant, on 8/13 of this year. Flu season is coming up and I have fear about being around other people. I guess I am wondering how long others stayed away from crowds or public places. I do not want to get an infecton. So far I have shown no rejection. I plan on getting a flu shot. I just want to know if my fears are valid or if I am making more of it than they are worth. By the way, I love this site. It has helped me out so much and I have learned a lot from the posts and the info. Thanks, Blake from Oklahoma. Blht85@cs.com


Kat H's October 7 reply to LaCinda's October 5, 2000 - Dear LaCinda, Welcome to Jon's Place! You've come to the right place. Everyone here has been where you are right now and we know how it feels. I've heard opposing diagnoses from different doctors too. What made the difference was finding a CHF specialist who knew what he was doing, who was sensitive to my medical needs and my feelings with a plus that he has always been very optimistic.
     The biggest problem right at first is confusion, not knowing what all the terms mean, especially how they apply or don't apply to you. Everyone is different. Write down your questions so you'll be prepared. A serious diagnosis deserves a serious response.
     Of course you're anxious. That's perfectly normal. It doesn't mean that it is the cause of your pain. The best way to help your doctor help you is to figure out when the pain happens. Keep track of when it bothers you, what you are doing (even if you are relaxing or just laid down to sleep or read) or what you were doing; if you are having any trouble breathing such as shortness of breath before or during, dizziness if it applies, and any other discomfort you associate with it. Make note of whatever you think applies. Then you can organize what you have learned to tell your doctor.
     As Jon points out, it could be that your blood vessels become temporarily constricted, which is what mine do. I do not take pain meds of any kind. I have a respiratory problem and pain meds could repress my breathing. That would actually make it a lot worse for me. I can't take nitro because I have PPH so I use oxygen instead. Every case is special. Every person is very special - around here anyway. Knowing this and having your information plus your questions organizied will really help your doctor(s). Anything any doctor says that you don't understand, ask right away what it means! Even take notes if you want to. I do! My prayers are with you, Kat. helmicks@intelos.net


Gus R's October 9 reply to Blake's October 7, 2000 - Hi Blake, I'm still limping along with my tired old heart so I know very little about your special concerns, but since all of us need to avoid complications, I'd like to comment on crowds, infections, etc,... I think the flu shots are pretty well a must for us, and ditto for a pneumonia shot. Someone here (Jon, I think) said that there just was no downside to the shots.
     There have been several past threads on things to avoid but either the search engine or I have a brain block and I can't find them right now. As I remember it, most of the people posting took some evasive measures. They included everything from avoiding close contact with others (no hand shaking or crowded elevators) to refusing to sit in dox waiting rooms with the coughers, avoiding public rest rooms as much as possible, etc,... Antibacterial hand cleaners were popular, including the new waterless type. Surface cleaners were also used by many on home kitchen and bathroom countertops, sinks, faucets, and anything else that seemed appropriate. Many had a preference for surface cleaners. At our house we think we have some success with one ounce of household bleach in a quart of water.
     The bottom line is: Yes, your fears are valid. The only thing to decide is how much risk you are willing to take to do some of the things that you want to do. Losing a few minutes waiting for a less crowded elevator makes sense to me, but missing a special event like the wedding or graduation of someone special, probably not. Best wishes, Gus R. gus13@net66.com


Shirley Valdivia's October 9 reply to Blake's October 7, 2000 - Hi Blake, I read your post and noticed you were from Oklahoma. What part of Oklahoma? I am from Sallisaw, Oklahoma. shirleyv@cwis.net


Laurie A, October 9, 2000 - Hi Everyone, Great news! I had my right heart cath done on Thursday and my numbers have all greatly improved, a lot of them are even in normal ranges! I can't believe it. I am not sure what all this means yet, except for knowing that the CHF specialist says I do not need to be on a list for a donor heart right now. The doc is still going to talk to the pulmonary team and see what they say. He believes my SOB has to do with my lung. I didn't get taken off any of my meds though, they just changed my dry weight. I can't wait to go to the doctors to really get to talk to him about what this means. Am I cured?
     The right heart cath through the vein in my neck was much easier than the cath through the groin. I was up off the table when they were done and sent on my way home! They did say that they think my following my fluids and diet and taking my meds was what got the numbers to be so good. I myself believe that Saint Katherine Drexal had a lot to do with it. I visited her shrine on Wednesday, the day before the cath! I am going to visit it again Monday and will say a prayer for all those who visit this site. Well, I will let you know my next step and be watching this site as always. I've got a lot to do, see you later! Laurie. Sarg0911@aol.com


Donald Gazzaniga October 9, 2000 - Hi Jon, I haven't written to you much lately. I've been more of a reader at your site than a writer. I've been kept busy with the http://www.megaheart.com site and volume 2 of the No Salt, Lowest Sodium cookbook. Volume one is promised for January 2001. I have stuck to my planned diet for 3 years now and just walked away from Stanford Heart Transplant Clinic with a new echo and oxygen test. When first diagnosed, as you may remember, my EF was 24% and my <mVo2 was 12%. My heart measurment was 7.4cm. This test was one to cheer. My heart has reduced to 5.82 cm, my EF is at 38% and my oxygen at 18.5%. Stanford medics credit the medications, exercise and the diet. They especially credit the planned low sodium (under 500mg a day). They didn't believe when I started this program that it was possible to to stick to it. It most certainly is. Scar tissue where the damage in the heart took place is the only real problem now, especially with my mitral valve. But my breathing is normal, my exercise is as strenuous as I want to make it and biggest of all I am off the transplant list. Because of this improvement, Stanford Medical Center has offered its impramatur for my web site. All that work has brought much fruition and I'm pleased that we've been able to help so many others, just as you have done. Keep up the good work and thanks, Don. don@megaheart.com


Jon's October 9 reply to Debbie H's October 7, 2000 - Hiya Debbie. Everyone, I have to take my daughter to the orthodontist in a few minutes but I'll be back to finish posts later this afternoon. Debbie, I asked Dr. Marc Silver about the saline nasal spray. (Remember that I rewrite Medspeak in replies from doctors so any mistakes in this are mine and not Marc's!):
     Generally the spray is not absorbed much into the circulation, so it's not a big problem. However, depending on the status of the nasal membranes and usage of the spray, some saline can be absorbed and become a problem. CHFers should always be aware of all the meds (over the counter and otherwise) that they take. For example, eye drops commonly contain beta-blockers and years ago many patients with severe CHF who started on these eye drops went into worse heart failure and no one could figure out why.
     Jon.


Lydia Moore, October 9, 2000 - Hi Jon and everyone, I have not posted in awhile but always read the posts on a regular basis. I have spoken much about my sleeping problems. I usually get on the average of 3-4 hours sleep a night. Recently I have tried a new item called Calmax. You might have seen it on tv. They claim it helps insomnia and other ailments such as restless leg syndrome, and all kinds of things. I have started taking it and am now sleeping 75% better and the restless leg syndrome is better by at least 75% or more. It is a natural powder drink, including magnesium, vitamin C and calcium. They say it is the fact that it is a drink, which is easily absorbed in the blood stream and faster acting, that makes the difference. All I know is that it works. If anyone is interested in ordering it, the number is 1-800-280-5590. Supposedly it is not sold in stores. I hope this can help others as much as it has helped me. God bless, Lydia. Flanders66288@cs.com


Rick M's October 9 reply to Blake's October 7, 2000 - Hi Blake, I am famous for being difficult about avoiding crowds and people, especially Snow Birds here in Florida. I never shake hands and I think all CHFers should think about it. It is the best way to get someone's cold, flu or other germs. You have to be ready to take the abuse that comes from not shaking hands but it helps if you tell the offended party, "I wouldn't want to give you what I have." It's especially difficult in church but after awhile people remember that you're different and just accept it. Using this method, I have avoided colds for the past 2 years. Of course, I have fewer friends as well but who's counting? rearadml@iu.net


Jon, October 9, 2000 - Hi everyone, I have not gotten my heart size page up but did get the other FAQ page done. It illustrates some of the more common heart conditions and defects diagram-style. Hope it helps, Jon.


Ophelia, October 9, 2000 - Hi, I bought a ticket to go to TX next week (I still have the ticket) to see my sister and also my friend who had CHF. I was going to surprise my friend. She passed away in her sleep 2 nights ago and I'm trying real hard not to get in a depressed state. She was 47. I think it made me aware that we need to just live each day to the fullest (within our restrictions of course) because when the Lord says it's our time, it's our time. Forget hanging in there; get up and live! Luv y'all, Ophelia. omclain@hotmail.com


Sue L, October 9, 2000 - Hi, My friend found this wonderful web site. Thanks! I'm 45 and have DCM. In Febrauary of 2000 I had a mild heart attack. It was then that I was diagnosed with DCM. My EF was 20%. After drug therapy, my doctor started testing me - in July - to go on the transplant list. I took my last test (O2 consumption) on Friday, October 6. I was told I would be placed on the list. My blood type is A-. I would like to know if anyone has had a heart transplant done at St. Francis in Peoria, Illinois or in Madison, Wisconsin; Better chance of getting a Packer fan heart in Madison. Also I would like to know how others have adapted to living with a beeper. I live 3 hours from the transplant hospital. Thanks, Sue. fainth@core.com


Anita's October 9 reply to Blake's October 7, 2000 - Hi Blake, I had a heart transplant on April 6 of this year. For the first month my cardiologist insisted I wear a surgical mask when I was in public places with a lot of people. I don't do that now but I do carry a "spare" mask just in case I encounter a public situation where I feel I may be at risk. I go anywhere I want to now and don't worry too much about infection. I have had no rejections so far either. I have my 6 month check up coming up in 2 weeks, and I will be getting the flu and pneumonia shots probably at that time. I hope you are doing well on all the meds. These first few months are a real challenge. I am 55 years old and had suffered from CHF and cardiomyopathy for 9 years before transplant was recommended. abcox@triad.rr.com


Lacinda, October 9, 2000 - Thank you so much! All of you, this is such a nice site. I have really been feeling alone in this and my doctors do say all different things. One thing I was told was not to take Tylenol for the pain because my other organs such as my liver and kidneys, are already compromised from heart failure. So for the pain of migraines, back pain and sinus polyps, I take pain killers but it is worse to take the Tylenol, according to my doc. I do think I should see a CHF specialist because the cardiologist I have is not much help at all. He takes this all too lightly and does not validate my symptoms. He writes them off to "emotional" triggers.
     Well, yes I am upset by this but not to the point to cause me physical stress. I have actually gotten rid of a lot of stressful things since being diagnosed. I see life in a whole new way now and for that I am grateful for this illness. I know that makes no sense but I was wasting time before and now I cherish it. So much the better if I survive this. I will have a long time then to live a meaningful precious life. I have read lots of medical info on this and it is not uncommon to have chest pains. I know what to watch for is not so much the pains but shortness of breath. Do any of you know of anyone who has remained at the same EF for years on the right meds? One doctor told me it is possible to live for 30 years at this level - 20% EF. I hope he is right. God bless you all and thank you for your kind replies, Lacinda. Ldearmitt1215@cs.com


Jon's October 9 reply to Lacinda's October 9, 2000 - Hi LaCinda, Tylenol can be hard on your liver. If your doc says to stay away from it, then he's not a very careful doctor. Unless they have radically changed it recently, Vicodin has a massive slug of Tylenol (acetaminaphen) in it, each and every pill. I'd start looking for another doc.
     It is uncommon for non-ischemic CHFers to have chest pain but certainly not unheard of. Chest pain is not unusual in those with ischemic cardiomyopathy. You should try to remain very aware of chest pain, since pain can be a danger signal from your body. It's mainly a matter of getting used to it and learning what is usual for you. If your chest pain ever changes in intensity, frequency or duration, get it checked out immediately. With SOB, again, it is changes in the SOB that need to be checked out immediately. Some SOB is a way of life for us. Jon.


Bill D, October 9, 2000 - Hi, I would like to hear from anybody who has been Coreg 3 years or more. I don't think SmithKline Beecham are following patients who were taking Coreg that long. I would prefer that you reply here so we will all see the results. In my third or fourth year, my heart was stopping for 8-10 seconds at a time. My pulse was going too far down. I'd appreciate your response, either if you had troubles or you didn't. Maybe I'm alone in having troubles with Coreg. Bill D. billdog@gate.net


Lyn, October 9, 2000 - Hi, I'm getting my records together for a transplant evaluation. It's not only a lot of work but it's now getting expensive because they charge for copies. I'm scanning all the records as they arrive and posting them on a web site. I think all my records should be together in one place. I also list there all the meds I'm taking. Anybody think this sounds like a good idea? Or what do you think? relpl@c4.com


Jon's October 9 reply to Lyn's October 9, 2000 - Hi Lyn, They're your records. I wouldn't put mine online for a million bucks, though. If you plan to leave them there, be sure to remove your Social Security number, phone number, health insurance policy numbers, credit card numbers, any other account numbers, mother's maiden name, hospital patient/account numbers including ER visit patient/account numbers, etc,... from all records. These allow people to rebuild your identity and fraud you to death. People can call the hospital, doctor or clinic and if they have this info, billers will believe they are you and might give out more info inadvertently. Also keep in mind that if a family health history is included, this could theoretically have a terrible impact on family members besides yourself without your knowledge. If an insurance company (or anyone who doesn't like you) spotted them and saw a pattern, health insurers might decline to cover anyone in your family. Lots to consider, so please think hard before continuing with this idea. Your call entirely, though. Jon.


Taavi K's October 10 reply to Blake's October 7, 2000 - Hi Blake, I had a heart transplant 3 years ago. I've become more relaxed about crowds over time but remain cautious. At first I wore a mask in any crowded situation such as waiting rooms. After the first couple of months, I began to relax a bit and now only wear it rarely. I do have several masks and always have one in the car if needed.
     It isn't just sick people you have to watch out for; beware of any situation where you may be exposed to mold or fungus. Examples: raking leaves, sweeping out the garage, anything to do with a compost pile, building construction or destruction - wear that mask! You sometimes get odd looks. If someone says something, give them a sales pitch for organ donation and watch them get nervous and uncomfortable! <g> So far I've had zero rejection and I plan to keep it that way.
     The flu shot is a must. I've been getting one every year and had no problems with them, pre or post transplant. Taavi. kubit002@tc.umn.edu


Roz' October 10 reply to Lyn's October 9, 2000 - Dear Lyn, I would like to strongly second Jon's words. I type out any changes in meds or procedures after each monthly visit to the cardiologist, print it and carry the information in my wallet. With my memory and the number of changes, it is really necessary. The changes are quickly made by correcting that page in the computer file (in a word processor). It gives my insurance info, doctor's telephone number, Social Security number, next of kin, etc,..., for use in an emergency and only when I give it to the person who has a right to it. I rather think this is probably what you had in mind instead of your web site. Best wishes for the transplant, Roz. RWarriston@aol.com


Jeanette's October 10 reply to Lacinda's October 9, 2000 - Hi Lacinda, I have been on meds for over 2½ years now and my EF is still only 20%. I feel fine but no changes have occurred. I take Coreg, Lasix and Zestril and been on the same dosage since my DCM was diagnosed. My cardiologist says that as long as I don't get worse, I am fine. I have been stable and even though I feel bad at times, I have good days more than bad. My cardiologist only sees me every 6 months now and he feels very confident about my numbers being so stable. I hope I have helped you. Take care, Jeanette. jeanette841@yahoo.com


Jill M's October 10 reply to Bill D's October 9, 2000 - Hi to all, Bill D asked about long-term Coreg users. I have just passed my 3 year mark. I suspect that I might hold the world track record for speed of delivery. For those who don't know me, I'm in Cape Town, South Africa, the home of the first heart transplant, and at that same hospital. Ten minutes after a cath confirmed my congestive heart failure and cardiomyopathy I had my first dose of Coreg, called Dilatrend here. I've been on 25mg twice a day for what seems like forever.
     No miracles but I'm hanging in there, and came home today from a 3 week visit to Scotland seeing family and friends, but mostly just doing my own thing, visiting historic sites and art galleries. My EF has remained stable in th elow twenties since my diagnosis but I did just fine. I walked for miles every day, ate some junk food and told only 2 people about my problem when I was confronted with seriously uphill walks. I flew with no hand baggage but became a bit SOB at times with the long airport walks. Amazingly, my weight is exactly the same as when I left. Boasting? Sure, but being a widow with nothing to lose I can afford to push the limits. Maybe my message is that I think it's important to venture forth, even very slowly if you think you can do it. Lots of love, Jill M. jillm@iafrica.com


Karen K's October 11 reply to Roz' October 10, 2000 - Hi, I would like to add a bit more to the idea of maintaining prescription records and carrying a copy. I keep the information on my computer. Whenever I have a dental or doctor's appointment, anywhere I might be asked about the medication I take, I print out a copy and take it along. This seems to be greatly appreciated when I hand it over.
     In addition, my husband carries a copy in his wallet. I print a copy for him whenever my meds or doses change and he reduces it down to a smaller size on a copy machine and keeps it in his wallet. I've started having problems remembering exact doses and certainly wouldn't expect that he remember them for me. Also, be sure to include any meds that aren't prescribed like CoQ10. This can be important information. Karen K. karenk@machlink.com


Jon, October 11, 2000 - Hi everyone, Some loved ones are sending posts to this side and I am re-routing them to the caregiver's message board. Please remember to take a look and help them out if you can. Jon.


Beverly C's October 11 reply to Rick M's October 9, 2000 - Hi, As far as not shaking hands due to potential infection, my mother wore gloves to church and to shop to avoid germs on shopping carts as well as other people's hands. It really worked well. It sure beats having to avoid human touch. Best of luck, Beverly C. macmember@earthlink.net
 
Jon's note: Careful what you tell Rick. He's likely to go to church wearing oven mitts! <g>


Robin B, October 11, 2000 - Hi, I want to thank all who replied to my post and apologize for it taking me so long to respond. My post was in regard to my experience with PPCM. I now know how lucky I am that it was caught so early. I just want all of you to know that my prayers are with you. KendallKB@aol.com


Ruthie A, October 11, 2000 - Hi, Work was going just fine and I was just tired. Then the work load increased dramatically and so did the stress levels. I began having chest pains and finally did a short time in Club Med, plus a stress test. Everything was fine, with no blockages so my pain was entirely due to stress. After careful thought, I quit my job. Health is always more important than money. So we are back to square one with no way of paying rent or medical insurance. In the meantime, I have found out that I need both knees replaced and that I have developed diabetes. Joy! It almost seems that my heart is the best part of my body! <g> I have been feeling great since I quit work so here's hoping we can have a good winter.
     Speaking of winter, the discussion about flu shots and being careful around people who are sick is very interesting. I am allergic to the preservative in vaccines and cannot have either the flu or the pneumonia shots. So I have to be extra careful, as in staying home most of the flu season. My family has already gotten their shots so that they will not bring home the virus. Still, there is also a lesson in this for us as well. If you do get a cold or the flu, stay away from people. You never know who may be in danger if you expose them. We naturally think of ourselves and our needs but sometimes we think that we will just run to the store to get some juice or to the drug store to pick up that prescription the doctor has called in. Please, if you are sick get someone else to do it. If you showed up at the pharmacy when I was there and you were sick with a cold, I could get it too. So let's think twice about what we are doing this winter, and maybe we will all make it through without getting sick, Ruthie A. rlaba@mindspring.com


Pat L's October 11 reply to Bill D's October 9, 2000 - Hi Bill and all, I started on Coreg as part of a drug trial in May of 1997 and continued on it after FDA approval, which I believe was around June, 1997. I titrated up to 25mg twice a day by about September, 1997. I have always felt such fatigue at that dose! My EF was about 27% when I started on the lowest dose but my <Vo2max was extremely low (12.9% in March of 1997). I stayed at that dose until summer of 1999, when I asked my cardiologist if I could try lowering my Coreg dose to possibly eliminate some fatigue. With his ok, I did. Tested by echo around that time, my EF in July of 1999 was 53% so I titrated down on Coreg and actually felt great at the lower dose for awhile. The I began having an increase in shortness of breath after about 2 months, while at 6.25mg Coreg twice a day.
     The doctor then put me on Lopressor and I quickly was up to 100mg twice a day but my heart rate was going up, hitting about 92 at rest. By February of this year, I had to go back on Coreg and begin the taxing chore of titrating back up. Now I am on 25 mg twice a day again. My EF decreased to 20% several months ago and remains there. Oddly enough, I went for a heart transplant evaluation again from July 11 through 17 of this year and my Vo2max was 16.6% and I did 7 minutes 33 seconds on the treadmill!
     I regret that I went down on Coreg dose because despite being back up on the highest (for me) dose, I haven't had an increase in EF and do have problems with shortness of breath a lot. I wonder if anybody is following those of us who have been on Coreg for 3.5 years or longer? Like you Bill, I did experience pauses in my heart beat, that started about May of 1998, and sometimes my pulse would be 34 or 36! That does not ocur any more. Pat L. patlat@yahoo.com


Rick M's October 12 reply to Beverly C's October 11, 2000 - Hi Beverly, You women are sure lucky. You can wear gloves to church and even hats, and nobody says "boo" but here in Florida a man wearing gloves better have a good excuse or they'd carry him off to the nut hatch. This week was the first time the air conditioner has been off since last May. It is back on today. rearadml@iu.net


Harold W's October 12 reply to Bill D's October 2, 2000 - Hi Bill, I have just been back through the posts and have not seen any reply to your request for information about Lee Roush. She welcomed me to this series on my first post, as did Bill D, and I do wonder if she is well and ok. Several e-mails have shown her to be a caring person. To you Jon, you are coming in loud and clear, and I like the new graphics. hwweems@airmail.net


Phyllis A's October 12 reply to Ruthie A's October 11, 2000 - Hi Ruthie and husband, God bless you. Just continue to trust in Him. You are truly a kind and loving person, and God will take care of you. You are both in my prayers, Phyllis A. phylcasurv@msn.com


Janice M's October 12 reply to Ruthie A's October 11, 2000 - Dearest Ruthie and family, I am giving your name in for special prayer request. We all think we have it rough. Before I read your letter I was thinking about how bad I felt but I have nothing to complain about compared to you. You are right about people being sick and sneezing and coughing on things and people. I am really praying for you and your husband. I thank you for you being so brave and being a testimony to others. I know that God must have special plans for you and your fanily. Lots of love and prayers to you. I love our Savior Jesus Christ! Thanks to you and Jon for opening my eyes to something I didn't realize before, Janice M. rbiggin@bellatlantic.net


Pete E's October 12 reply to Pat L's October 11, 2000 - Greetings to all, It has been awhile since my last post. I have been on Coreg since early 1997 also. My EF is stuck around 20%, but my <Vo2max is also a little over 20. Stick to those diets, exercise if the doc says it is ok, and keep your eye on the prize of life. I was taken off the transplant list this past February. I may be back someday but not for awhile.
     A couple weeks ago I went on a solo backpacking trip into the BWCA wilderness. It was something I felt I needed to do and it was a great experience. A story about my adventure will be posted on my web site in a week or so. Some may question the sanity of something like that. You should have heard my mother! But I made it and my AICD did not start firing (my biggest fear) and no bears ate my food. Pete. peiden@healthyheartmarket.com


Joe S' October 12 reply to Beverly C's October 11, 2000 - Hi, About not shaking hands, several years ago I had a booth at an international trade show. Virtually every vendor got very ill on the fourth day and the show came to a halt because no vendors showed up. We all figured an Indian from India who was obviously very ill spread the disease. When I told another vendor at a similar show, he told me the secret was to wash your hands every hour when doing shows like that. I have followed his advice since then in all situations and it works; no more colds or flu. Another great remedy is collodial silver, which kills viruses and bacteria. It works too, look it up on the Internet. It is very cheap to make, Joe S. jes@stevensonlighting.com


Walter K, October 12, 2000 - Hi, I'm curious if anyone has a possible explanation for this. I had a pacemaker put in about 1992, before I had CHF. The pacer was set at a base rate of 60. Because I played tennis then, the pacer was set to its most sensitive setting (increase pulse with very little activity) and to a long slow-down time after activity stopped. At rest my pulse rate was 60.
     After I developed CHF, my pulse was in the high 80s even at rest and went to the low 100s with little exertion. Since I don't play tennis anymore I had the pacer reset last week, at my suggestion, to a normal sensitivity and slowown rate. The base setting was not changed. Immediately thereafter my resting pulse dropped to 60-63. I had assumed the high 80 pulse rate was due to CHF but apparently the pacer had something to do with it. I have not had a chance to talk to a doc about this yet but it seems weird to me. A resting pulse of 60 is certainly better than one in the high 80s for a CHFer but what was going on? hknoth@magpage.com


Ben B's October 12 reply to Pete E's October 12, 2000 - Hi, Congratulations on your hiking trip. I do not question the sanity of this. I question the sanity of not trying to live one's life to the fullest possible, even with a disease. bdbrinkman@juno.com


Jean C's October 12 reply to Ruthie A's October 11, 2000 - Hey Ruthie, Isn't it just like you to think about other people and warn us to not spread germs just for our own convenience by running sick on small errands? God has a special place in His plan for people like you who can wade through their own troubles but still think of others. I am saying many prayers for you and your husband, and wish that I were close and could do more. I pray that God will send good happenings your way and take care of you and your husband. Much love, Jean C. ojean@oz.sunflower.org


Marcos, October 13, 2000 - Hi, I was told I have heart failure. I'm age 36 and the doctor said I'm at 20%. A second doctor said it's more like 30-40%. Sorry folks, I'm just scared. I don't know what to expect. Any advice would be nice and helpful. El_Jefe_64@yahoo.com


Bill D's October 13 reply to Harold W's October 12, 2000 - Hi Harold, I just e-mailed her nurse/friend, Dina Baker. Maybe she can tell us what's going on with Lee. I've gotten e-mails suggesting where to write her. My e-mail came back. One of her friends tried to call her in Bloomingdale, New Jersey, where she lives. Unfortunately, it was an unlisted number. I'll try one more e-mail address before I give up. We're all concerned about her, Bill D. billdog@gate.net


Tom B's October 14 reply to Marcos' October 13, 2000 - Hi Marcos, First take a breath. There are tons of us who've walked this trail ahead of you and there are tons of tools the doctors have to treat you with - many of which work! I know: My EF was 19%. Now it's 40% after customized drugs and having a pacemaker installed. Please do take time to read as much of this site as you can now and if you are like me, you'll re-read it again later. It will make even more sense then. Virtually everything you need to know and ask is on this site.
     What you have is in fact serious and life-altering but there are plenty of ways to cope and adjust. You'll need to, and you'll find good folks here to offer suggestions whenever you need it. tbehan@home.com


Rieale, October 14, 2000 - Greetings all, It has been awhile since I have written so I'll do a little recap. I am 23 years old and have idiopathic DCM and class 2 CHF. I was diagnosed in January, 2000. After 6 months of Coreg, my EF was unchanged at 15%. However, I do have some good news. My <Vo2max level has risen from 14.6% to 15.3% and that was 2 days after ICD implantation.
     I just wanted to share some good news. About a month ago, I decided to participate in the InSync (bi-ventricular pacing) ICD trial at the Cleveland Clinic. Well, on Tuesday, October 10, my electrophysiologist Dr. Saliba sucessfully implanted my ICD. I only spent one night in the hospital and Thursday I was already home. I am sore and tired but thrilled that everything went well. I don't know whether my pacing device is on or not and won't know for 6 months but the defibrillator gives me some sense of security. I hope my participation in this can help further the quality of our treatment.
     I am also wondering if anyone who has had an ICD implanted would be willing to communicate with me. I have some questions, such as how long did it take your wound site to heal and what kind of things can I expect? My doctor has shared with me the technical info but I'm curious about the personal side. This was a very difficult decision for me to make since I have been improving symptomatically but now that I've had it done, I have no regrets. Please feel free (anyone) to write me. God bless all of you. Rieale@aol.com


Jeff M's October 14 reply to Dee D's October 3, 2000 - Hi Dee, I just received a heart transplant on Labor Day, 2000. I read your post about the Swan-Ganz cath. I agree with Jon and I just wanted to say this: I have to get a Swan-Ganz cath (right heart cath) once a week at this point and they check my pressures each time and they get a reading that tells them how well my heart is removing fluids from my body, basically. They also a take a biopsy (5 pieces) from different areas of the heart to check for rejection. I have had about 10 of them now and it was very scary for me the first time and the second and the third. I am getting used to them now and I don't want to scare you.
     I have a secret trick for you if you end up having to have one. There is a cream called Emla made by Astra Pharmaceuticals and if you put that on your neck right where you take your pulse an hour before the procedure you will hardly feel anything. Put a nice sized glob on there. Also ask them to use plenty of lanicane and make sure that they wait 3 to 5 minutes after putting the lanicane in to insert the cath. I am a wimp and I am not afraid to admit it! I make sure that it is as comfortable as possible and I actually slept through part of the procedure this week. They want you comfortable too. I hope this will help you out or anyone out there who has to do the Swan-Ganmz cath thing. iowajeff29@aol.com


Jeff M, October 14, 2000 - Hi everyone, First I want to thank everyone who said a prayer for me, sent me e-mail, and thought of me while I was in the hospital these past weeks. I received a heart transplant on Labor Day this year and I had an LVAD removed in the process. Wow! Let me tell you there was someone working this Labor Day! Thank you, God.
     I am doing really well. The first month was pretty rough but I am moving along now in leaps and bounds. If anyone has any questions about the whole deal, send me an e-mail and I will do my best to answer any questions you may have. Have a nice day! iowajeff29@aol.com


Jim T, October 14, 2000 - Hi Jon, I had a stress test (persantine) since my legs don't work too good. My EF is 30% now; better than it was a few years ago when they were talking transplant. I think Coreg did this. Anyway, they are doing another stress test in a couple of weeks. I think I am heading for another angioplasty. I feel bad and am tired all the time. I am too old for a transplant. They tell me 69 is the cutoff age and there must be no other problems. I have had strokes, CAD, etc,..., so I just let Jesus handle it! I pray for you all, Jim T. jcrichtontaylor@voyager.net
 
Jon's note: Be sure to see this page


Kat H's October 14 reply to Jeff M's October 14, 2000 - Hey Jeff, Congratulations! That is truly wonderful news. I am so glad you are doing well. I have no idea what it might feel like to have a normal pumper. It is my biggest curiousity in life; which brings me to,..,
     Pacemakers and defibrillators: My abnormal rhythm has become so bad, with my meds not working very well anymore, that my doctor has recommended much more bed rest. Five years ago, doctors tried me on an external pacemaker but my blood pressure went up to 138/84 and I was at rest, so they said I couldn't have a pacemaker. Do these devices increase everybody's blood pressure like that? My doctors say that it does and high blood pressure is not good. When I was on the device, I was not on any medication at all. I have a friend who recently had a pacemaker installed and says she also takes medication so her heart won't beat so hard but the pacemaker maintains her rhythm. I am wondering what other people's experiences have been.
     For 42 years, since the day I was born, lifestyle has been the primary method for maintaining heart rhythm for me. Anything from physical activity to lying or reclining on my back that causes abnormal rhythm are things I am not allowed to do. Now it is bed rest most of the time. Meds have never been much help. The one I take for rhythm also increases my blood pressure, which is why I take another to lower that pressure. How is that combination different from a pacemaker when meds don't work well anymore? I don't think it is. If you have some kind of regulating device, I would be interested in your opinion or experience, especially with regard to blood pressure. Thanks, Kat. helmicks@intelos.net


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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