The paperwork never ends The Archives
July 16-31, 1999 Archive Index CHFpatients.com

Helen O's 7-16 reply to Tom S' 7-14     Rx help possibilities
 
Kim S 7-16     vasovagal epsiodes question
 
Jon's 7-16 reply to Kim S' 7-16     you might ask my wife
 
Jon 7-16     lifting restrictions
 
Jan P 7-16     on the mend, thanks & more
 
LeeAnn D 7-16     lifting, Y2K & Rx drug question
 
Jon's 7-16 reply to LeeAnn D's 7-16     Y2K & Rx drugs
 
Susie O 7-16     chest pain questions
 
Jon's 7-16 reply to Susie O's 7-16     chest pain possibilities
 
Jon 7-16     CoQ10 and Coumadin use
 
Pete E's 7-18 reply to Rod Butler's 7-15     salt substitutes
 
Pete E 7-18     book by heart patients
 
Phyllis ? 7-18     transplant evaluation coming - prayer request & more
 
Pam C 7-18     symptoms of ill health, doctor's response, what to do?
 
Leland Yee 7-18     My EF is up! & more
 
Hope M's 7-18 reply to LeeAnn D's 7-14     beta-blockers to calm nerves
 
Susie O's 7-18 reply to Jon's 7-16     doctor is great, just curious about pain descriptions
 
Pat L's 7-18 reply to Kim S' 7-16     vasovagal episodes
 
Jon's 7-18 reply to Pat L's 7-18     be careful driving & more
 
Bill D's 7-18 reply to Jon's 7-16     CoQ10 may not be worth it
 
Jana B 7-18     hospital stays & new hearts, & to Claudia
 
Halim 7-18     pacemaker implant, edema & questions
 
Brenda H 7-18     a-fib & stroke questions, SSD & more
 
Ann C 7-18     update, Vo2Max, EF & more
 
Sandy W 7-19     seeking new doc, bruising question
 
Crystal S' 7-19 reply to Phyllis ?'s 7-18     transplant thoughts & experience so far
 
LeeAnn D 7-19     Leland, Jan, Bill D, Kim
 
Joe S' 7-19 reply to Pete E's 7-18     common products having sodium, questions
 
Bob H 7-19     meds evaluation can help
 
Greg B 7-19     update, Coreg doses, irbesartan questions
 
Brenda H 7-19     to Robin's husband, & Ann
 
Helen O's 7-19 reply to Pam C's 7-18     get a new doc and fast!
 
Robin Lynn 7-19     update, meds questions, & more
 
Susie T 7-19     seek heart transplant recipients' experiences
 
Jon 7-19     adding Aldactone info
 
Ben B 7-19     docs say statistics are out of date
 
Jeanne L 7-20     seek doctor in new area
 
Pete E's 7-20 reply to Joe S' 7-19     over the counter stuff & sodium
 
Lee R's 7-20 reply to Pam C's 7-19     see another doc fast
 
Jon's 7-20 reply to Pam C's 7-19     ditto Lee & Helen O
 
Lee R's 7-20 reply to Pat L's 7-19     see electrophysiologist, write us
 
Julie's 7-20 reply to Ben B's 7-19     thanks for the Url
 
Bill D's 7-20 reply to LeeAnn D's 7-19     CoQ10 trials, blood levels & more
 
Joe S' 7-20 reply to Sandy W's 7-19     bruising, thin blood, & to Robin Lynn
 
Al M 7-20     spironolactone, Coumadin & SSD review
 
Jon's 7-20 reply to Al M's 7-20     spironolactone (Aldactone) & SSD review
 
Susan P 7-20     down today, a-fib & rheumatic fever questions & more
 
Cecil's 7-20 reply to Pam C's 7-18     see another doc & more
 
Pam C's 7-20 reply to Helen O's 7-19     seeing another doc & more
 
Jill M's 7-21 reply to Jon's 7-19     Aldactone (spironolactone)
 
Suzanne B 7-21     seek doctor in my part of Florida
 
Danny S 7-21     chest pain, sleep & blood pressure questions
 
Tom S 7-21     Rx now under control
 
Linda J 7-21     update, Aldactone
 
Staci H 7-21     Aldactone, stair climbing questions & more
 
Cindy M's 7-21 reply to Jeanne L's 7-20     doctor hunting
 
Cindy M's 7-21 reply to Al M's 7-20     SSD earnings limit question
 
Jon 7-21     Aldactone (spironolactone)
 
Ann C's 7-22 reply to Jon's 7-21     Aldactone (spironolactone)
 
Jon's 7-22 reply to Ann C's 7-22     Aldactone (spironolactone)
 
Sara 7-22     Robin's transplant & Aldactone
 
Peg G 7-22     update - good news! & Aldactone
 
Hope M 7-22     Searle Url, Aldactone side effect possibilities
 
Jon's 7-22 reply to Hope M's 7-22     good Url, Aldactone side effects & more
 
Pauline 7-22     sporting ambitions, questions on coping
 
Susie T 7-22     questions on cardiologists & forgetfulness
 
Jon's 7-22 reply to Susie T's 7-22     cardiologists & forgetfulness
 
Angie H 7-22     update, hospital stay, meds & more
 
Angie H 7-22     how do I cope with work? questions
 
Tom S 7-22     update, Coumadin & weight loss
 
Julie 7-24     seeking doc recommendation, vitamin source & more
 
Ruthie A 7-24     another ER visit - diuretics & sulfa allergy
 
Roy Burt 7-24     intro, has anyone had CHF more than 6 years?
 
Joe S' 7-24 reply to Susie T's 7-22     meds & mental fogginess
 
Al M's 7-24 reply to Cindy M's 7-21     SSD, Medicare, Aldactone numbers
 
Hope M's 7-24 reply to Jon's 7-22     sensitivity to Rx drugs plays a role
 
Claudia S 7-24     has anyone lost hair from Rx heart meds?
 
Robin Lynn 7-24     to Pauline & Angie
 
Jon 7-25     Aldactone vs Aldactazide
 
Marsha L 7-25     intro, doing well
 
Richard ? 7-25     intro, adriamycin induced CHF & more
 
Pete E's 7-25 reply to Claudia S' 7-24     hair loss with illness
 
Al M 7-25     virus warning
 
Jon's 7-25 reply to Al M's 7-25     eyeglasses & virus warning
 
Robin W 7-25     update after my heart transplant
 
Mickie C 7-25     Atkins diet & other diet questions
 
Gaile 7-25     questions - diuretics, massage, altitude
 
Cecil's 7-25 reply to Claudia S' 7-24     hair loss
 
Terry T 7-25     question about VA & CHF treatment
 
Lynn D's 7-25 reply to Julie's 7-24     CHF docs in your area
 
Susie O's 7-25 reply to Terry T's 7-25     treatment in VA hospitals
 
Linda O's 7-25 reply to Gaile's 7-25     altitude & CHF
 
Phyllis A's 7-25 reply to Richard's 7-25     chemo-induced CHF
 
Jon's 7-25 reply to Gaile's 7-25     altitude, massage for edema, & diuretics
 
Jack's 7-25 reply to Mickie C's 7-25     Doc Atkins' & other low carb diets
 
Jack's 7-25 reply to Gaile's 7-25     massage therapy, exercise
 
Grace J 7-27     seek CHF doc in southern California & more
 
Jana B 7-27     hair loss & weight gain Coumadin questions, to Robin & more
 
Richard H's 7-17 reply to Phyllis A's7-25     working vs SSD, chemo & CHF, & more
 
Jane M's 7-27 reply to Gaile's 7-25     lymph drainage massage therapy
 
Pauline 7-27     thank you for the encouragement & more
 
John Len 7-27     question for Jack, diabetic complications & more
 
John Len's 7-27 reply to Jack's 7-25     Atkins' diet, ketones & more
 
Phyllis A 7-27     thank you for prayers, update
 
Allen Cravener 7-27     update, a-fib, pacerone questions
 
Brenda H's 7-27 reply to Mickie's 7-25     special diets, losing weight
 
Ben B 7-27     computer viruses
 
Doug Knuth's 7-28 reply to Jana B's 7-27     Coumadin & weight gain, & more
 
Harry W 7-28     update, good news! & more
 
Harriet Prince 7-28     intro, coping
 
Phyllis A's 7-28 reply to Richard's 7-27     illness & Disability
 
Renee M 7-28     diets, losing weight, keeping it off
 
Jill S 7-28     working again & SSD reviews
 
Jill S' 7-28 reply to Gaile's 7-25     altitude & CHF experience
 
Danny's 7-28 reply to Allen C's 7-27     Pacerone, multiple meds & more
 
Leland Y 7-28     back from trip, PVCs question
 
Brenda H 7-28     to Phyllis, & ear pain question
 
Hope M 7-28     Coumadin & weight loss
 
Susan P 7-28     update - good news!
 
Ben B's 7-28 reply to Jill S' 7-28     SSD - crazy, ain't it?!
 
Marc S 7-30     Smelling ammonia odor & more
 
Ben B 7-30     clarifying my Disability comments
 
Linda 7-30     seek Pensacola, Florida CHF doc recommendation
 
Jill S' 7-30 reply to Ben B's 7-28     SSD
 
Ginger's 7-30 reply to Leland Y's 7-28     PVCs
 
Jon 7-30     online survey to check out
 
Jon 7-30     need questions for new FAQ page, everyone
 
Phyllis A 7-30     weekend trip, stay cool everyone
 
Danny S 7-30     question about blurring vision
 
Randy 7-30     intro & more
 
Jon's 7-30 reply to Gaile's 7-25     don't forget the sodium restriction!
 
Randy 2, 7-30     heart attack & bypass - seek support
 
Joy R 7-30     sodium intake & more


Helen O's July 16 reply to Tom S' July 14, 1999 - Hi, There are programs that help people gets their meds. The drug companies usually sponsor programs for the indigent. Social service organizations can also help with the cost. Also, sometimes your doctor can provide samples of medicine to help with expenses. Helen O. 25 years old, EF 24%. woohoo@imap4.asu.edu


Kim S, July 16, 1999 - Hi, I wanted to know if anyone knew what causes a vasovagal response? When the technician was injecting the isotopes before my MUGA scan, I suddenly became very flushed. My head began to pound and I started to lose my hearing as if I were going to pass out. I put my head down and the feeling quickly passed. It all lasted about a minute. I'm not quite sure what caused this. lalakimmie@aol.com


Jon's July 16 reply to Kim S' July 16, 1999 - Hi Kim, I've never researched it but you could write my wife and ask her. She got these episodes out of the blue for a long time and finally had to go on meds to prevent it so she could drive safely. Her e-mail address is musicmom.geo@yahoo.com. Jon.


Jon, July 16, 1999 - Hi everyone, I wrote my CHF doc about lifting restrictions and here's the gist of what he said: There's no science to this. Lifting heavy loads is an isometric exercise that increases the load on the heart more than dynamic or isotonic exercise. That type of exercise tends to thicken normal heart walls and could worsen thickening of already hypertrophied (thickened) hearts with cardiomyopathy. A one time 50 pound lift is generally not hazardous, unless you only weigh 75 pounds.
     The rest of this is not attributed to my doc but something I thought should be considered: Some doctors tell their patients not to lift over a certain amount of weight to keep people from having to go back to jobs that require a lot of heavy lifting that will do them no good and increase their exhaustion. Food for thought. It sounds like this may be a case by case thing, with no real general guidelines. Jon.


Jan P, July 16, 1999 - Hi, I want to thank all of you for your thoughts and prayers in my behalf. I am on the mend after my cardiac arrest. It was a completely unexpected event. I never had any problems with ventricular arrhythmias before. Thank goodness for my husband knowing CPR and paramedics who are only blocks away. I am most thankful for the constant prayers that were offered for my recovery and a Father in heaven who listens to, and answers prayers. I still have a few more things to accomplish while on the planet. I now have a pacemaker and a defibrillator, as well as a $52,000 hospital bill, which our insurance will pay. Thank you Jon, for keeping in contact with me during this difficult time. Bye, Jan. jan.peterson@usa.net


LeeAnn D, July 16, 1999 - Hi everyone, Thanks for all the input on lifting. Of course in any kind of emergency, I wouldn't think twice about lifting even my heavy 6 year old, but I may be a little more careful and do lots of holding and hugging on the couch! I haven't read any posts on this yet, so I'll just ask. Is anyone here trying to stock up on a couple of months of meds for Y2K? I'm not talking hoarding or anything, but kind of a "just to be safe" attitude? I haven't made any attempt, but did read an article in a health mag that said heart patients should get at least a couple of months worth just in case other people stocking up clean the shelves. I know that my drugstore loses me from time to time in their computer already! LeeAnn in Phoenix, age 38, EF 30. ddavis1057@aol.com


Jon's July 16 reply to LeeAnn D's July 16, 1999 - Hi LeeAnn, I read a local newspaper article on this subject recently and called the reporter and we had a long talk, and shared information. Many different type plans are available to Americans these days to help defray Rx costs but most - and I mean far and away most - of us are part of a health insurance plan that only allows a 30 to 90 supply of Rx drugs to be purchased unless we pay entirely out of pocket. Most of us cannot afford to pay out of pocket for our Rx drugs. Due to this, I personally do not believe there will be a significant shortage of any of the Rx drugs I take due to stockpiling on the part of individuals. Then again, I don't personally believe there's going to be a significant shortage of anything due to Y2K. :-) Jon.


Susie O, July 16, 1999 - Hi everyone, I've been reading this site since April of 1999, when I was diagnosed with DCM/CHF. The info that is passed among everyone here is really great. My question is: you are to call your doctor when you have chest pain, right? Okay, at what type of pain does the doctor or ER really want to hear from someone who suffers from DCM? I did a really dumb thing last week by using my treadmill, which felt great at the time, but about 3 hours later I went to take a deep breath and lost the air in my chest because of the pain. I didn't call my doctor because I didn't want to be chewed out but I did see my regular doctor a couple of days later. The pain was still coming and going. He examined me and seemed to think I had just overdone things, which is what I think I did (but I haven't gotten back on the treadmill since). Well, thanks for being here and listening. mrpaco975@aol.com


Jon's July 16 reply to Susie O's July 16, 1999 - Hi Susie, If you worry about getting reprimanded by your doctor for calling him when you hurt, you should very seriously consider getting a different doctor, who doesn't cause such hesitation. My clinic's doctors encourage their patients to call them whenever there might be a problem. They say it's better to be safe than sorry and I agree completely.
     One very subjective way to tell if a chest pain is heart-induced is whether you can "touch" it or not. If pressing on the hurting area helps, or significantly changes the pain, it may be a muscular or skeletal pain, rather than heart-induced. This is by no means a hard and fast rule, but it is one way a patient can help decide whether to run (figuratively speaking) to the Emergency Room or if a call to the doctor/clinic is sufficient for the time being.
     If I have a chest pain that seems heart-induced, I follow my doc's orders for taking NitroStat. Per his instructions, if a seemingly heart-induced pain does not go away after 3 doses, I have someone drive me to the ER or call an ambulance. If I think a chest pain is not heart-induced, I call my chiropractor or internist. They almost always tell me to see my cardiologist anyway to be safe and then come see them if it isn't being caused by my heart! <g> In short, be cautious and call the doctor. Maybe some others who have chest pain can chime in here and shed more light on the subject! Jon.


Jon, July 16, 1999 - Hi everyone, It took me several months (I sent the request for info February 8 of this year) to get a reply from Dr. Peter Langsjoen regarding Coumadin and CoQ10 but today, he finally got an answer to me. He says that there is a Danish trial underway to settle whether CoQ10 interferes with Coumadin use once and for all. To date, only one such case has been reported in any medical literature and he has never seen such a conflict in any of his patients, who almost certainly all take CoQ10. So, I doubt there is any reason for concern about CoQ10 causing a problem for Coumadin users. Sorry for the delay in getting the information. Jon.


Pete E's July 18 reply to Rod Butler's July 15, 1999 - Hi Rod, Another thought on the salt substitutes; To be successful on your low sodium diet, you need to retrain your taste buds not to crave the taste of salt. It can be done. It took me about 3 months. If you are strict with your diet, it is possible for some people to get off Lasix (not everyone, though). I have not been on any diuretics for over 2 years. Pete. Peiden@skypoint.com


Pete E, July 18, 1999 - Hi, I too am a reader and do not post so much anymore. It is nice to see all of the new people around. The patients at the transplant center where I am being treated have gotten together and written a book. It is a collection of individual experiences of people waiting, or having gone through a heart transplant. It is a must read for anyone who has heart problems of any type. All of the proceeds are being used to set up a fund for transplant patients and their families in Minnesota. You can order a copy from my Website at www.healthyheartmarket.com, in the books section of the store, or call me toll free at 1-888-685-5988. Here is what Dr. Marc Pritzker, Medical Director of Heart Failure and Transplantation at the Minneapolis Heart Clinic wrote for the back cover:

     "Death, suffering, rebirth and humor are the stuff of great literature. In these stories told by real people in their own words, we learn about the sorrows, joys, ironies, fears and trials of people at the edge of their existence. These people show us what it means to be human, reminding us that life is precious and unpredictable."

Thanks. Pete E. Peiden@skypoint.com


Phyllis ?, July 18, 1999 - Hi everyone, After thinking the heat and humidity have been bothering me all summer, they ran a cardic cath. They have now decided it is time to evaluate me for a transplant. I have been reading the posts from Lisa and Robin about their transplants and it sounds encouraging. I would appreciate hearing from anyone who has had one. I also would appreciate prayers and good luck wishes from anyone. Thanks! Phyllis. pwatjen@vincennes.net


Pam C, July 18, 1999 - Hi, I've posted a couple of times on the Loved One's forum since my husband has CHF. I am now posting here to ask a few questions on my own behalf. Mainly I want to know if I could possibly have CHF even though my BP, heart rate, resting EKG, lung and heart sounds all seem normal? I am 45 years old. These are the symptoms I've been having: Starting about 3 years ago - about one year after having spent 18 hours under anesthesia for a mastectomy and reconstructive surgery - I'd awaken in the middle of the night and my heart would be pounding hard and I'd have trouble catching my breath. I thought it was weird but didn't think much about it. Slowly since then, I've put on about 70lbs.
     About a year ago, I started noticing occassionally getting extremely short of breath when others didn't seem to be bothered especially if it was hot out. Now over the last few weeks, I've had several episodes of extreme shortness of breath, very hard beating of my heart, with the heart rate staying around 80, breaking out into a sweat and becoming brightly red flushed. I'd even feel my pulse all over my body's skin. If I get up in the middle of the night to go to the bathroom, when I lay back down it takes several minutes to catch my breath. I just lay there and breathe as if I'd just run 5 miles.
     Last weekend, we walked a short disance in the mall and I was breathing so hard and my heart was beating so hard that I had to look around for a place to sit down. I've also started having trouble with the thigh of my right leg falling asleep if I lay on my right side or back, and sometimes when I'm just standing for a while, such as in the grocery line. Needless to say, I finally called my PCP and went in on Monday. He did a 15 second resting EKG and it was normal. My heart rate was 66 and he didn't hear any stange sounds from my heart or lungs. He found no swelling either. He said that he wanted me to go to a cardiologist for a stress test and holter monitor. It turns out that the only cardio group in town that takes my insurance is the same guy my husband goes to that we already think is a total jerk. My husband is switching ASAP after the tests on the 29th already scheduled.
     Well, I went to see him yesterday. I told all my symptoms to the info taker who wrote it all down. The doctor came in, glanced at the paper, listened to my chest and said, "There's nothing wrong with you." I questioned him about the symptoms and he said something about "excess fear or allergy problem." I disagreed and he looked at me and said, "Well you probably don't exercise." I informed him that I swim or walk almost daily and work out with weights 2 to 3 times a week. He just shrugged and didn't say anything. My PCP told me that chances of my having a problem at my age and being female are slim. He agreed to do a stress test in 3 weeks but guaranteed me it won't find anything.
     I'd love to believe him but I don't trust him. He thinks it's all in my head. I want your opinion. Given how I've described things, could it all be in my head, given the lack of evidence? I believe from what I've read that a stess test won't necessarily show if you have CHF. All walking on a treadmill might do is make me short of breath. There are other doctors in the same office and I'm going to ask to see one of them after I do the test. Am I making a fool out of myself and wasting my time? I'm sorry this post is so long. Have a nice weekend. Pam C. woo_conley@hotmail.com


Leland Yee, July 18, 1999 - Hi Jon, I got good news this morning. I got my results for a MUGA done 7-14-99. My EF is at at 42%, up from a low of 16% on March 13. My friends and relatives are asking why, what, how? I told them that someone is watching over me, and we all know who He is. The important steps during my rehabilitation were:

  1. Diet: don't even try to sneak up to the 2000mg sodium allowed. Eat healthy and follow directions.
  2. Exercise: I followed the cardiac rehab schedule. Get your rest (naps). Do the exercises daily
  3. Regimen: Don't damage what's already been hurt. Don't try to be superman and mow the lawn, climb ladders, lift heavy packages
  4. Drugs: don't forget doses. Report any and all symptoms of adverse drug reactions. Take meds on time

     For the new CHFers reading these posts, hopefully this will give you new incentive. You can get better. You can look for the future. You can't give up. LLYEE@surfside.net


Hope M's July 18 reply to LeeAnn D's July 14, 1999 - Hi LeeAnn, My doctor told me once that he sometimes prescribes beta-blockers to attorneys solely for use when they are going to be in court. Many attorneys do not go to court often, and when they do, they get very nervous (just like any normal human being). The beta-blocker does act, as you suspected, to lower the adrenaline and the attorney feels calmer. I've often wondered though, if sporadic use in this way could have some sudden bad effect! Hope. hlmcneil@earthlink.com


Susie O's July 18 reply to Jon's July 16, 1999 - Hi Jon, I wasn't clear in my question earlier, I guess. My doctor has been wonderful. He has been so supportive for me. I have been bringing in documents from the Internet and he always takes the time to answer my questions. Just yesterday, he took time before seeing patients to see me to write a memo for me to take to work. I guess the chewing out part was more from my husband's being upset with me for being on the treadmill to begin with. I didn't want to be a bother to my cardiologist at 7PM even though he is always telling me to call him if I feel a need to. I had been reading about women and heart attacks and different types of pain and all. All I'm sure of is that there is pain, not the radiating pain that I read about with heart attacks. I guess I was just looking for someone else's experience with pain and their discription to see if mine is about normal for this condition. Thanks for taking the time, Jon. You are great and your family must be also! mrpaco975@aol.com


Pat L's July 18 reply to Kim S' July 16, 1999 - Hi Kim, I had numerous episodes of what was finally called vasovagal episodes or vasovagal syncope, after I had been on a vasodilator for several weeks and had been increased on the dose. I also experienced the flushing and I felt like my face and fingers were burning, then I felt like I was passing out. My blood pressure dropped to 70/34 during one episode and I always had to lie down right away no matter where I was; once in the dining room of a cruise ship we were on. I was treated for this by a neurologist. There really wasn't anything he could do. He wanted me to go on Zoloft but I said no thank you, I'm on enough meds now to choke an elephant! I changed vasodilators several times since and I still experience the problem occasionally. I think it has to do with stimulation of the vagus nerve, and the blood rushing to my head, the blood pressure dropping, causing the fainting sensation. I pretty much figure it's a side effect of the meds. pat L. patlat@yahoo.com


Jon's July 18 reply to Pat L's July 18, 1999 - Hi Pat, You may need to see an electrophysiologist about those episodes to be on the safe side. My wife had them a lot and a tilt-table test at the EPS lab showed that she desperately needed Rx medication to prevent the episodes from becoming dangerous. She requires daily medication to allow her to safely drive as well. So please be sure it really is just a side effect of your meds by having it checked out. We'd kind of like to have you around here for awhile yet. <g> Jon.


Bill D's July 18 reply to Jon's July 16, 1999 - Hi Jon, I have recently read about 2 trials, one in Germany, that came to the conclusion that CoEnzymeQ10 wasn't of any measurable benefit to CHF patients. I just received a new catalog from Puritan Pride and noticed they have reduced CoQ10 by about 20%! I think when my present supply runs out, I won't be buying anymore. Bill D. billdog@gate.net


Jana B, July 18, 1999 - Hi, First I want to say congratulations to Lisa and Robyn on their new hearts! While I was doing this little hospital stay I just did, I couldn't help but think of Robyn and how she was waiting in the hospital for her heart. I couldn't stand being in there and was even starting to become a little depressed and frustrated. I dread when my time comes for transplant. I get so bored in hospitals, especially with this stroke I had, I really didn't feel sick. I guess it helps to be sick while you are in there.
     Secondly, I want to reply to Claudia. My EF has improved since I have been on Coreg, but I started all my meds at the same time so I am not sure if it was the Coreg that improved it, other meds, God or all. I was able to lay off the Lasix and take them only as needed, as opposed to every other day. I hardly ever take them, usually only when I am PMSing. Jana. JByers4u@aol.com


Halim, July 18, 1999 - Hi to everyone from everywhere with CHF, I am from Turkey and a 67 year old man. Jon, I have a pacemaker. Nearly a year ago, I went to a doctor and he said that there was a block and the pacemaker must be placed. There were no swellings at that time. After 20 days, when I went to hospital for control, there were swellings around my ankle. They gave me some pills, however no positive effect was seen. Then after some controls, the doctors decided to change the place of the pacemaker and it was placed on my right side. However, there are still edema around my ankle and now I am using Lasix in order to avoid the fluid. I am walking 100 to 150 meters without any trouble but I can't climb stairs. This disturbs me and I am wondering if this is normal, and whether these swellings will be avoided or not? Moreover, might a pacemaker implantation cause such problems or not? Thanks for your attention and if you answer, I will be very happy. ememis@superonline.com.tr


Brenda H, July 18, 1999 - Hi, I wanted to make a comment on Coumadin vs aspirin. I asked my cardioligist about it and he said that for some aspirin is strong enough but for me, my valvular insufficiency is too significant to chance it, meaning my heart is too stretched to only have the blood flow one way. I feel much better that I won't have a stroke thanks to Coumadin. Right now my INR is only 1.5, which worries me. They increase it so slowly, I don't think I need to worry about being on a high level! I finally applied to SSD and will find out in 2 months if I get it, they said. My doctor did write me a note saying the cardiac disease makes me completely and totally disabled. The part that worried me is he said for a minimium of 6-12 months and possibly indefinitely. Do you think this will be for or against me? Also, I have episodes 2 or 3 times a month that really scare me; my heart starts racing and I get very faint and it's hard to breathe. Does anyone else go through this? Could it possibly be from Coreg? I asked my doctor and he said it could be one of 3 things. One being very dangerous would atrial fibrillation (a-fib). Thanks in advance for any input. Brendakay@wa.freei.net


Ann C, July 18, 1999 - Hi Everyone, This is just an update on what's been going on the past few weeks. I was hospitalized briefly for CHF and released after a huge dose of injected Lasix, and sent on my merry way. I had been dealing with the flu and I guess my system overloaded on me. I then went to St. Louis Barnes and saw my cardiologist, who gave me a Vo2max test that read me at 9% - not good - but my EF the way he reads it is between 30 to 40%. He says it has not changed. He upped my Prinivil and is keeping me on a modest dose of Coreg. Since then, I have been good but I have a wheelchair for long trips and a wonderful handicapped sticker now, and I get all the looks. <lol> I hope that all is well with you all and my prayers go out for each and every one of you. I am hoping for a miracle but maybe just the fact that I am in no pain right now and the bout with CHF is over for now is enough of a miracle for me. God bless and take care. Ann. dacadcannann@yahoo.com


Sandy W, July 19, 1999 - Hi all, I haven't posted for a long time but I continue to read your posts almost daily. The information is so helpful. My question is: I have red marks similar to bruises on my lower arms. I take aspirin but not Coumadin. It really looks like I have been beaten up. Does this happen to any of you? I understand not feeling comfortable with calling your doctor. It feels like you are bothering them or that you are crazy. I am afraid of changing docs, as I don't know where to go. We are in San Diego, California. If anyone has any sugestions, we would appreciate the help or information. God bless and keep you all. Sandy W. KITTY95992aol.com


Crystal S' July 19 reply to Phyllis ?'s July 18, 1999 - Hi, I haven't had a transplant but my son has. I am also in the process of being evaluated for one. My advice to you is to look into it. I am very afraid myself. My son was born with DCM, which he inherited from me. Everyone always wants to feel sorry for me with what I have gone through with him but I have to say that he has a new heart now and I am still dealing with the same piece of junk I was born with. I am at a point in my life where I would welcome a new heart, but not the scar. What can I say, I am only 27 and very vain. Anyway, I am on 5 medications a day throughout the day and my son, who has a new heart, is only on 3!
     His heart, as you transplant people know, is now controlled hormonally as opposed to electronically but that's the only difference. Once you have cut the electrical nerves from your heart and a new one is put into place, the electrical nerves can never be re-attached. So it might take about 10 minutes for your heart rate to catch up to where it needs to be during activity, and up to an hour to calm back down to it's resting state after activity. As a transplant family, we take cleanliness precautions of course but that's it. If someone is sick at a family get-together, we politely excuse ourselves early. After all, my son is only 3 years old. The meds after transplant need to be administered precisely on the hour and the schedule is not to be deviated from in the least. You need to keep the levels of the immunosuppressent drugs always at a constant to prevent rejection; Just my thoughts. I hope it helps a little. God bless all. Crystal. (formerly CSharp3957@aol.com but I had to change my screen name due to an aol mess up. I need to find a new provider) CP543@aol.com


LeeAnn D's July 19, 1999 - Hi everyone, First of all, congratulations, Leland! I feel I've done all of those things on your list and by the grace of God I have also improved from an EF of 12 to 30! Jan, welcome to the defibrillator club. The first one they put in me during surgery used all of its power to start my heart, so they put in the next size up (yes, its huge!) and they charged my insurance company for both of them; They paid it. I couldn't believe it. Bill D, did those trials you read about CoQ10 say if it was gel or powder, and whether or not it was taken with fat? I'm just curious, I've read that if you take the powder capsule and don't eat any fat with it, that you don't really absorb much anyway. The gel form absorbs easier. I know a lot of vitamins go right through you if you don't take them correctly. Kim, I've had two MUGA scans in my life and both times that I was injected with isotopes I got flushed, everything went grey and my BP dropped. I have never felt this before or since. LeeAnn in Phoenix, age 38, EF 30. ddavis1057@aol.com


Joe S' July 19 reply to Pete E's July 18, 1999 - Hi Pete, I just learned one more thing to watch out for this morning. I woke up with diverticulitis. I went to buy a Fleet's Enema, and low and behold, it said paople with CHF should not take it because it was saline based. Does anyone know any other common thing we should not take? How about these new toothpastes with baking soda and what about nasal sprays? This board has helped me in so many small and large ways but I wonder what else I can learn. Joe S. JES@StevensonLighting.com


Bob H, July 19, 1999 - Hello everyone, I usually sit in the background and read but just a little note and some possible good information for all. Those of you who have been on a certain medication for some time might ask you doctor to review your meds. About a month ago I went to my first appointment with my new cardiologist and after a thorough examination, including EKG and stress test (done the previous week with thallium), he advised me that I was taking too many blood pressure meds. He wantred me to stop taking Diltiazam (calcium channel blocker), of which I was taking 180mg per day 7 days a week. Well, I stopped taking it and after only 3 days, I started feeling a lot better. Prior to that, I had been exhausted every morning after taking a shower, and was extremely short of breath. Since I stopped, I haven't had too much exhaustion from the shower and only shortness of breath when I am actively doing something (usually something I'm not supposed to do). So you might want to ask your doc to evaluate your medications every so often. Take care everyone and try to enjoy life the best you can because it's too short. Thanks for listening. Bob H. oldgoat378@aol.com


Greg B, July 19, 1999 - Hi Jon, I was finally diagnosed in early 1998 with CHF after some years of heart trouble. After an echocardiogram indicated my EF was 20, I was put on 3.125mg Coreg twice a day for 30 days. Thirty days later, my dosage of Coreg was doubled to 6.25mg twice a day for 30 days. Later, during that particular 30 days of increased dose, there were some side effects such as blood pressure dropping much lower than it had been and some dizziness causing some loss of balance. It was recommended that I revert to the first dosage of 3.125mg twice a day. That day, an update echocardiogram was performed, indicating an EF of 40. As happy as the news was, I was disappointed in having to revert to the initial dosage of Coreg. Although I consider myself doing well for the most part and by no means complaining, there is slight shortness of breath. On my next scheduled visit with my cardiologist, I am hoping a compromising dosage of Coreg can be established with little or no increase in side effects. I would also like to discuss the possibility of the drug Irbesartan with him. Do you know of anyone on Irbesartan? If so, how successful has it been, as well as any side effects, if any? Thanks in advance and God bless! Greg B. gregba@telapex.com


Brenda H, July 19, 1999 - Hi all, I want to thank Robin's husband for keeping us up to date on Robin. It means a lot. I pray that things will go well for you guys. I may need a transplant in the next 10 years, my doctor said, so it means a lot to hear from those dealing with it. Ann, I'm glad you're feeling better. We have to keep the faith and know miracles can happen. Brenda, age 32, EF 25%. Brendakay@wa.free.net


Helen O's July 19 reply to Pam C's July 18, 1999 - Hi Pam, Get a new doc now! Just because you are female and mid-40s is just an excuse he is using. I should know. I was diagnosed last October with idiopathic dilated cardiomyopathy and congestive heart failure. At the time, I was a 24 year old female college student. I always thought that the problems I was having were either in my head or that they were just normal, all because I listened to doctors who gave me excuses for what I was feeling. Most doctors do not acknowledge that more women die of heart disease once they enter menopause. Change health plans if possible. If not, go in to see the doc armed to the teeth with info. Good luck. Helen O, age 25, EF 24%. woohoo@imap4.asu.edu


Robin Lynn, July 19, 1999 - Hi to everyone, I haven't posted in a few weeks but a lot has been happening. First, I have been keeping up with all the posts and would like you all to know that Jon's Place, and everyone it contains has been put on our prayer list at my local church.
     Now I would like to update everyone. I am currenly taking 5mg monopril (down from 20mg 3 weeks ago) 50mg atenolol (back up from 25mg), 20mg Lasix as needed and 325mg aspirin. I had become orthostatic (blood preasure dropping) so my cardio doc cut all my meds in half, including atenolol. I felt like I had been reborn. I had energy that I hadn't had in a long time. It was short lived. Two days later, as I was getting caught up on some much needed housework, those dreadful arrhythmias came back with a vengeance. My blood presure was going up to 130/86 just with moderate walking. When I had the tachycardia with runs of PVCs, I would nearly faint, once bringing me to my knees. I had to wait 5 days to see my heart doctor because it was the July 4th weekend! I stayed on the couch, afraid to move for fear of passing out in front of my children.
     Before I was put on meds, I would have occasional (3 to 4 per week) episodes but when my meds were cut in half, episodes were continuous throughout the day. My doctor increased my atenolol back to 50mg but cut my monopril down to 5mg! I don't think I have been on this therapy long enough (4 months) to cut it so low without first doing an echo. What do you all think? My main question and concern is this: since my symptoms became so much worse than they were before meds, could the meds be covering up some progression? I did make an appointment with a heart failure clinic but have to get a referral for insurance purposes. I am now collecting all my records to take with me. Any thoughts on this will be greatly appreciated. God bless you all. Congrats to Robyn and Lisa on your new hearts! Hello to Staci, I hope you are feeling better. Robin Lynn. Heartful@mailcity.com


Susie T, July 19, 1999 - Hi, I just wanted everyone to know my prayers have been with everyone but I don't get to the computer as much as I used to. I have just finished reading all the new information and updates on everyone. I wanted to congradulate the 2 new heart transplant patients. I would also like information from any heart transplant patients about what it is like. I know that everyone is different, and there are good and bad. My doctor said I could probably go back to work if I had one. I just haven't heard of too many people going back to work so I think he thought this was a way for me to say yes. May God bless you all. Susie T. staylo26@bellsouth.net


Jon, July 19, 1999 - Hi everyone, I have received articles about adding Aldactone (spironolactone) to CHF treatment from a lot of people today. Thank you! Readers give me 75% of my best info. This one is covered on the New CHF Meds page. Be sure your heart doctor is aware of this. Jon.


Ben B, July 19, 1999 - Hi, I just read some stuff on www.webmd.com/index.html, which is a very good site, that is sort of positive. It basically said that the consensus of doctors is that the dismal survival statistics are way out of date, so don't start sending out funeral invitations for 5 years from now. This is pretty much what we have been thinking for awhile but it is nice to hear some doctors say it. bdbrinkman@juno.com


Jeanne L, July 20, 1999 - Hi everyone, I'll be moving from Arizona to Connecticut in a week. I'll be living about 20 miles south of the Hartford area. If anyone has the name of a CHF specialist in that area, an e-mail would be greatly appreciated. Today on the news I heard about a new medication that is showing great results for CHF patients; it was called Aldactone. Does anyone have any news they can share? Is anyone using it? God bless you all. Jeanne. jeanneml@hotmail.com
 
Jon's Note: See this page, this page and this post.


Pete E's July 20 reply to Joe S' July 19, 1999 - Hi Joe, Thanks for the note. I have a book called The PDR for over the counter drugs. It lists the ingredients and warnings, including excess sodium, for just about every OTC medication there is. I always consult it before taking anything. It is available through my pages at www.healthyheartmarket.com. Pete E. Peiden@skypoint.com


Lee R's July 20 reply to Pam C's July 18, 1999 - Hi Pam, You are not making a fool of yourself or wasting your time. Some doctors can be notorious when it comes to women. I was told that it was anxiety by my PCP. Three months later, I was diagnosed with DCM and an EF of 29%, and now I have an ICD/pacemaker, too! Is there any chance of getting them to do an echo/stress test? It makes more sense when dealing with a woman to do an echo. I think it is done just before the stress test and then when you are huffing and puffing afterward. A 15 second EKG does not tell all. Think about a new doctor, watch the salt just in case, and let us know what happens. We care! Lee. LeeRoush@aol.com


Jon's July 20 reply to Pam C's July 18, 1999 - Hi Pam, Just an addition to Lee's post. Regardless of sex, many doctors do not consider DCM or CHF a real possibility based on your age. They can be deadly wrong. My own CHF was misdiagnosed for almost a year because my doctor thought I was too young to have heart failure, so he never even considered it. It took near-death and an ER doctor to get me diagnosed and even then, my doctor at the time argued with the ER doc that he was wrong and I did not have CHF! Meanwhile, it was killing me. Get another doc - fast. Jon.


Lee R's July 20 reply to Pat L's July 18, 1999 - Hi Pat, Please follow Jon's advice and see an electrophysiologist about your syncope. If you have any questions, I'm sure Jon's wife or I could help you. Lee. LeeRoush@aol.com


Julie's July 20 reply to Ben B's July 19, 1999 - Hi Ben, Thanks for the webmd address. I was a bit down tonight and it really helped. I didn't plow through the whole site but did bookmark it for future in-depth studying. Thanks for sharing. Julie. julie3350@deja.com


Bill D's July 20 reply to LeeAnn D's July 19, 1999 - Hi LeeAnn, Both of those trials are right here at Jon's Place! Sometimes I think we're too anxious for a "magic bullet." I've been taking 120mg of powder capsules every day with lunch for years. Still, I've never seen just how much CoQ10 is in the blood of a person who doesn't have anything wrong with him. You would think the researchers would have come up with that! I sent my blood (cooled all the way!) to Dr Peter Langsjoen. He came back and said I had 0.7 something per something. <g> I never found out just how much is good. I get grumpy when I have to make out a check to Puritan Pride! <g> Bill. billdog@gate.net


Joe S' July 20 reply to Sandy W's July 19, 1999 - Hi Sandy, As far as I know, bruising and discolorations are not necessarily a bad thing. It means your blood is thin. I have had this problem all my life. Of course, I have had heart problems all my life also. Many doctors have told me I will never have a stroke because of this thin blood. Also as many doctors have told me, I will never have a heart attack because of my heart being so large. I don't know if they know what they're talking about but I sure hope they're right.
     This is for Robyn Lynn. If I were you, or if anyone has serious problems, why not go to the emergency room of your local hospital? In California, they have to treat you and if you can pay, what is money, compared to your life and health? Joe S. JES@StevensonLighting.com


Al M, July 20, 1999 - Hi, Regarding the spironolactone activity, I think it is great that researchers are re-checking some of the older medicines. I was put on Aldactone a little over 2 years ago. At the time, I was taking 160mg of Lasix and taking a Lasix "booster" called zaroxolyn. The obvious effect of all that Lasix activity was a rather significant loss of potassium. I was taking 6 of those K-dur pills daily; 180 of them a month really adds up in the expense column as well. There are 2 types of spironolactone that are typically given. The one I take has a 15 stamped on it and the other has a 45 stamped on it. They also come in 25 and 50mg. I take the one 15 and 25mg. The one with the 15 is the very mildest of diuretics and the 45 is a boosted diuretic. The reason I was given the drug was because it is called a potassium sparing drug. Since taking the drug, I no longer take any K-dur. I also have no more cramps, nor does my former arrhythmic heart do its thing. I guess the sodium business is a new finding but I think the drug is great.
     I take Coumadin and I'm not overly concerned. The aspirin route was ineffective in thinning my blood, hence more dangerous about clots with A-fib and arrhythmia. I am holding at 5mg per day and my protime or PT level is 2.5, which is right where they want it. You do have to have frequent blood tests. I have had too much of it and I bruised very easily, which was not a normal event for me. At such times, as I jokingly told the doctor, "I am avoiding shaving for a while."
     About SSD reviews, I called the SS office about something else and happened to ask about review. I had been puzzled since when I got my letter, it said 5 years, and I had read some posts which suggested that some were getting 7-year reviews. She looked up my record and they now have me for a 7-year review so the policy changed about the time I got my letter. If you don't know when you will be reviewed, you can call them and ask. Asking won't cause them to speed up the process.
     Also, I learned that as of June of 1999, you may now earn up to $700 without loss of benefit, which is up from the previous limit of $500. If you work and manage to earn more than the $700, which they deem to be "significant earnings" (not I), that before they just cut you off, they deduct several items like prescription drugs. There is a handy little booklet they will mail you entitled "Social Security - Working While Disabled - How we can help" and it is helpful. So continued good health to one and all. Al M. ajmiii@web-access.net


Jon's July 20 reply to Al M's July 20, 1999 - Hi Al, This is just an addition to your post to help everyone understand the spironolactone (Aldactone) information coming out again this week. I put this information up last fall because the results of the RALES study were "leaked" early so doctors could start giving the drug to their CHF patients right away, thus improving their survival.
     My CHF doc put me on spironolactone late last year as a result of these leaked findings. The final results are now out and this is what has hit the press this week. It really is the same study, though. It is on the New CHF Meds page and also in The Manual. The dose recommended in this study is 25mg per day, which is not enough to act as a diuretic, even though technically the drug is a diuretic. The 25mg daily dose turned out to significantly reduce risk of death in CHFers, and is just added to your current meds. You should have blood work done just before and after starting Aldactone, since it does - as Al said - affect blood potassium levels. If you are not yet taking this drug, ask your CHF doctor about it! By the way, my spironolactone pills have an 85 stamped in them! <lol>
     You can find a lot of good info about SSD on the Social Security Disability page and through the links there, which include the Social Security site itself. They have many booklets like the one Al describes available for the asking and they post information about review times and more on their pages. Jon.


Susan P, July 20, 1999 - Hi Friends, I've been keeping up with the posts daily and I wonder if there's anybody else out there having tons of A-fib problems as a result of rheumatic fever. I just started taking Sotalol (after taking Rythmol for more than a year). I had 2 valves replaced in April and I'm looking forward <g> to my 6th cardioversion of 1999. I suppose what I really want is something to read about advanced rheumatic heart disease.
     The dox tell me the rhythm problem is typical - what else is "typical?" What other little goodies are lurking about? I've had minor and serious bouts with CHF for 26 years, 2 rounds of open-heart surgery (fixing valves) and now the A-fib and shock treatments. Have I hit the worst of it? I'm usually quite upbeat but today the whole mess seems a bit overwhelming and I feel lousy. I know we all have rotten days (some more than others) but sometimes the frustration gets the better of me. I feel guilty complaining because I know most of you, my CHF friends, have a much more difficult situation to live with than I do. spower@apsllc.com


Cecil's July 20 reply to Pam C's July 18, 1999 - Hi Pam, There is no reason to put up with a doctor who will not listen to the symptoms you presented to this forum. Ask him for a chest x-ray. This will show 2 things: first, whether your heart has expanded and 2, if there is excess fluid in your lungs. I exhibited the same symptoms you describe and went through a bunch of tests which came back that I had nothing wrong. I still felt terrible so I asked the doctor for a chest x-ray. That led to an immediate trip to the cardiologist for an echocardiogram, which led to the diagnosis of cardiomyopathy. Hopefully, this will not be true in your case but if it is, don't despair. As you will see on this forum, there are a lot of us in this situation who are learning how to deal with this. Best wishes. Cecil3744@aol.com


Pam C's July 20 reply to Helen O's July 19, 1999 - Hi, I want to get a new doctor ASAP. When I go for the stress test, I'm going to request someone else in the group there. I can't change insurance until January of 2000. My husband (CHF diagnosed about 6 months ago with last EF of 30) has a job interview this Friday. We want to move back to the Midwest to be close to family and to have a lower cost of living than we have here. If we are able to move, maybe we can find better doctors there. Las Vegas is notorious for poor medical care. Everyone, thanks for your private replies. Pam C. woo_conley@hotmail.com


Jill M's July 20 reply to Jon's July 19, 1999 - Hi all, It's been a long time since I last posted, but I'd like to put in a plug for Aldactone. Last time I was tested, my EF dropped from 42 to 26 on echo, and I was put on Aldactone. I am on a low dose of 25mg a day but have cut my Lasix to 20mg a day with no weight gain at all, and I'm feeling better than I have in 2 years. I know everyone is different and I am one of those people who suffer few, if any, side effects from whatever I take but I think Aldactone has really worked for me. I don't know what my clinical results are like - tests due in August - but I am not having palpitations like I had before and can sleep on my left side again. Jill M. jillm@iafrica.com
 
Jon's Note: You can sort of think of low-dose Aldactone as an ACE inhibitor booster.


Suzanne B, July 21, 1999 - Hi, I am looking for a CHF specialist in my area of Auburndale, Florida. During this past week, I have been diagnosed with CHF. I have an EF of 12. I am having very much trouble with cramps in my lower legs, hands and my throat when I yawn. Thanks for any suggestions. Suzanne B. fleurdsn@gate.net


Danny S, July 21, 1999 - Hi Everyone, I'd like to know if anyone else has had these problems. I know we have chest pain but it's affecting me so that I feel I'm sleeping my life away! Also, I have very bad high blood pressure and at times I find it hard to take my blood pressure from the pain it inflicts on my arm. I have battled my BP for years and I know my oversized heart is a product of high BP. I thank you for any info you can share. Dan. DLS50@webtv.net


Tom S, July 21, 1999 - Hi, I want to say thanks for your consideration but I have worked something out with the pharmacy and am back in their good graces (bigger line of credit) so we will get by for now. Again, I really do appreciate the offer. Sincere best regards and good wishes. Tom. biggerbhoy@hotmail.com


Linda J, July 21, 1999 - Hi, I was dismissed from Club Med today. I went in Friday at noon and Saturday at 6:00 AM I had lost 18 pounds (good ol' Lasix IVs keep you busy). My doctor put me on Aldactone and he called me earlier this evening, telling me that my Blue Cross Blue Shield had called him and asked him why he put me on Aldactone for CHF. He was thrilled to tell them to check the new research. I was surprised to find out that they watched doctors that closely. jonesgen@aol.com


Staci H, July 21, 1999 - Hi, First of all, I would like to thank Jon again for this wonderful site. You will never know how much it has helped me and so many other people. The news of this old medication Aldactone, is wonderful and I was put on it in February of this year. I was started out at 25mg and now am taking 50mg. I am also taking 40mg of Demadex, which I think is equal to 160mg of Lasix, 20mg of Prinivil and 0.25mg of Lanoxin. I take my diuretics in split doses, half in the morning and half about 6 in the evening. My Aldactone has 35 stamped on it. :-).
     I was diagnosed a year ago with CHF and my EF, which is 38, has not improved at all during this time. I know that I am on all the best meds for CHF, except for Coreg, which I cannot take because of severe asthma. Does anyone know if Aldactone will improve EF? Would an Ace II Inhibitor be better for someone not able to take Coreg than a regular Ace Inhibitor? I would also like to know if any of you have a problem with climbing stairs. I have been doing pretty well symptom-wise lately. Yesterday morning I had an early meeting downtown and had to park a block away and walk, and then climb a flight of stairs to the entrance of the building. By the time I got to the top, I had swollen up like a balloon and my heart felt like it was going to pound right out of my chest. I endured a 20 minute meeting and while sitting, my hands also started swelling up. By this time, I was becoming rather short of breath. I ended up driving home, taking extra diuretics and put myself to bed. I was much better today but am wondering if stairs are something that all CHFers need to stay away from? Or maybe a combination of stair climbing and the heat? Is it possible that at another time I could have climbed them and not had a problem?
      Susan P, it's good to hear from you again! Jana, I'm glad that you're doing so much better, and Robin Lynn and Gatha E, I hope that you all are feeling better. Everyone here is so very special. God bless all of you and I pray that you all will find comfort in Him. Life is hard, God is good! Quirki98@aol.com


Cindy M's July 21 reply to Jeanne L's July 20, 1999 - Hi Jeanne, Although I cannot give you the name of a cardiologist in Connecticut, I did grow up there and know that basically, there are several cities and the rest of the state is little towns, where I doubt you'd find much. My advice is to look in either the New Haven, Hartford or possibly Bridgeport areas for a CHF specialist, with the New Haven area being my first choice. Best of luck! Cindy M. cleighmc@aol.com


Cindy M's July 21 reply to Al M's July 20, 1999 - Hi Al, Thanks for the info regarding the "significant limit" of SSD earnings going up from $500 to $700 per month. While I'm waiting for the booklet you recommended to arrive, would you be able to tell me if the amounts in question are gross or take home income? Much thanks. Cindy M. cleighmc@aol.com


Jon, July 21, 1999 - Hi everyone, I made a booboo. I thought that because the news about the RALES study and Aldactone was released early in November of 1998 at the American Heart Association meeting in Dallas, that everyone was aware of it. I put the results on the New CHF Meds page at that time. I also added it to The Manual in the Rx Meds section at that time. It seems though, that this is fresh news to most people, so I will put up the New England Journal Of Medicine article that was just released later tonight (energy allowing) and send a mailing out immediately afterward.
     Please note that this study does not indicate Aldactone use as a diuretic, although it certainly can be used in that way, but as a sort of ACE inhibitor "booster" that decreases mortality. Not to insult any doctors, but one good way to know if your CHF doc is really on the ball is whether he put you on low-dose spironolactone before this recent article came out. If so, your doc was paying attention at the American Heart Association meeting last year. My doc called me up last year at home immediately after that meeting and put me on Aldactone. I do like my doc! <g> Jon.


Ann C's July 22 reply to Jon's July 21, 1999 - Hi everyone, When I saw the article about Aldactone, I called my cardiologist right away and asked about it. He told me he has been using it for a long time now, but since my Coreg is not titrated up high enough, he wants to wait to put me on it. It was nice to know that I did not have to explain it to him. I am very comfortable that he is on top of things. I just want to know how the med works in simple terms. I read the study, but I guess I still am not understanding what it can do for me. Does it reduce further damage? Thanks for any further info you can give on the subject. dacadcannann@yahoo.com


Jon's July 22 reply to Ann C's July 22, 1999 - Hi Ann, First, I need to add something I definitely should have put in my post yesterday. Low-dose Aldactone is meant for CHFers in class 3 to class 4 heart failure. No studies have been done which prove it helps people in class 1 to class 2 CHF. I was class 3 when my doctor put me on it and am once again class 3 now.
     What Aldactone (generic name is spironolactone) does is block the production of a hormone called aldosterone. Your body makes aldosterone, but in heart failure, like many other body chemicals, it does more harm than good because our systems are all screwed up. ACE inhibitors block a lot of aldosterone but it turns out that they don't block it all. Aldactone sort of finishes the job that ACE inhibitors start in this department, making the combination of an ACE inhibitor and a low dose of spironolactone a very good idea for those with severe CHF. That's why I think of it as an ACE inhibitor "booster."
     Keep in mind that the researchers who did this study don't even know for sure why the results are so good for CHFers taking the stuff. Like so many Rx meds, it just works, and no one knows exactly why. So it goes. :-) The New CHF Meds page now has a version of the study that is sort of halfway between the short and long versions I mailed out yesterday, if anyone wants to give it a read. Jon.


Sara, July 22, 1999 - Hi everyone, I haven't posted for awhile but I do keep up. Great news about Robin's transplant and to all of you who are strong and giving support to one another, God bless you all. Well, as far as Aldactone, my brother-in-law was put on it about 18 months ago and it seems to be prolonging his life. He is 65 and asked to be put on Coreg also and his doc said he was doing well on Aldactone and it was one or the other. He didn't want to make changes now. He has very advanced CHF with a defbrillator, and about 8 different meds. They told him about 18 months ago they couldn't do anything more for him but he is still with us. Sara. sunny20853@aol.com


Peg G, July 22, 1999 - Hi guys, I want to share my good news with you. I went to my cardiologist last Tuesday and with the exception of the 1/3 of my heart that is non-functioning, my heart has pretty much gone back to normal! It's pumping really well again, like it's trying to make up for the part that won't function. Thanks be to God and my doctors! My left atrium, that was greatly enlarged because blood wasn't really flowing in and out of it, (it was mostly staying in it) has now gone back to its normal size. My ejection fraction is right at 50% and my leaky valve is barely leaking now. My heart is normal size and my breathing is pretty much back to normal. I don't know what my ejection fraction at the very beginning of all this was but it was 39% after I had been on heart meds 6 months. That was before they really learned the extent of the damage to my heart, and weren't really giving me enough medication. The other thing I want to comment on is that I take Aldactone, and have for a year and a half. I was put on it as a diuretic. I take 100mg a day and it doesn't deplete your potassium like Lasix or Bumex does. I also take 2 Bumex a day. My prayers are with everyone here. God bless! Peg G. goochey@pacbell.net
 
Jon's Note: You have to watch for hyperkalemia with Aldactone - too much potassium!


Hope M, July 22, 1999 - Hi, I just thought I'd recommend that everyone read an information page on Aldactone. It starts with a warning: "Spironolactone has been shown to be a tumorigen in chronic toxicity studies in rats. Aldactone should be used only in those conditions prescribed under Indications and Usage. Unnecessary use of this drug should be avoided."
     After reading all of the package insert when my doctor prescribed it for me last year, I called him and said I just didn't feel comfortable taking a drug with so many possible hormonal and other side effects. I hope it does turn out to be really effective for CHF, with not too many people having side effects. hlmcneil@earthlink.net


Jon's July 22 reply to Hope M's July 22, 1999 - Hiya Hope, Reading all the info is always excellent advice! Thanks for the Url. Still, even the warnings on aspirin scare me! <g> The real beauty of this study as that it only takes a low dose of spironolactone to get the benefit, which really cuts down on the odds of side effects. Searle bases its warning on the usual use of Aldactone as a diuretic, with a beginning dose of 100mg per day, raised to as high as 200mg daily for long-term use and as high as 400mg daily for short-term use. The RALES study only calls for 25mg per day to get the noted benefits. That 25mg daily dose was even reduced to 25mg every other day in some of the study patients to reduce high blood potassium levels and still, they got a reduction in death and hospitalizations. As you rightly say, we need to be very aware of the possible drawbacks to all the drugs we take, but we also need to take dose, drug combinations, and possible benefits into account when making decisions. It sure makes life complicated, though, doesn't it? <sigh> Jon.


Pauline, July 22, 1999 - Hi, I have recently been diagnosed as having DCM/CHF and am slowly coming to terms with that fact. Up until now I have been pretty positive, fit and active, and a keen dressage rider with hopes of qualifying for our National Championships in the UK. My first question, I suppose, is how do you stop yourself from crying all time? Secondly, is there anyone out there who has gone on to achieve a similar sporting ambition, despite their condition? Finally, thanks a million for the site - I need all the help and information I can get right now. chloe276@aol.com


Susie T, July 22, 1999 - Hi, I don't want to sound dumb, but is a cardiologist and a CHF specialist not the same thing? I know here lately I have a hard time remembering things. Like the other day, phone numbers I have known for years, my e-mail address, and spelling. Is this just a phase, is it going to get better? I think my mind is going instead of my heart. staylo26@bellsouth.net


Jon's July 22 reply to Susie T's July 22, 1999 - Hi Susie, These are good questions. Be sure to read The Manual for more information. All CHF specialists are cardiologists but not all cardiologists are CHF specialists. Cardiologists come in all flavors - some are "electricians" who specialize in the heart's electrical activity and are called electrophysiologists. Other cardiologists specialize in "invasive cardiology" which is caths, angioplasty and other procedures that require going inside the body. Other cardiologists specialize in treating people with heart failure and these are the docs we want. To find out if a cardiologist specializes in heart failure treatment, you have to ask. Be sure he doesn't just "take" such patients. You want a cardiologist who "specializes" in these patients.
     Forgetfulness may be partly due to chronic lack of oxygen to our brains or it may due to our medications messing with our body's chemicals. Then again, it may be both. Our hearts don't push as much blood (which carries oxygen) to our organs and our brain as it should, so we may run a bit slower mentally than we used to. Jon.


Angie H, July 22, 1999 - Hi Jon and everyone, I have just gotten out of the hospital with a fluid overload and shortness of breath (my first hospital stay since being diagnosed). I was there for 3 days. My last test showed an EF of 47% but I have a lot of symptoms. I think it may have gotten worse because I am feeling worse and am more symptomatic. While in the hospital, I was put on 25mg Aldactone daily. I am also already taking Diovan, Verapamil and Demadex. He also put me on K-Dur for one week and I have to go back to his office on Friday to get some blood work done to check my potassium. After reading the letter about Aldactone, it is kind of scary. Well, thanks so much for keeping us informed. I learn much more here about meds and things than I do from my doctor. Your site helps me to ask the right questions. May God bless you and your family. GABAT3@aol.com


Angie H, July 22, 1999 - Hi everyone, I already posted earlier today but I needed some advice about another problem. During my hospital stay, my doctor was discussing me going back to work. I work in a hospital as a nursing assistant on a long term care type of unit. All my patients are bedridden so my job requires a lot of heavy lifting. My doctor told me no lifting over 40lbs under any circumstances. He also gave me a note to that effect. My problem is that I know my job will not honor that note because I have seen it happen too many times to other people. They consider that "light duty" and they will not give light duty to employees unless you were injured on the job. The hospital I work in is a state mental hospital in North Carolina. Does anyone have any advice or suggestions for me? I cannot lose my job because I barely get by now with 2 incomes. Thanks a bunch and God bless you all. GABAT3@aol.com


Tom S, July 22, 1999 - Hi, I have lost about 18 pounds in the 6 weeks I have been off that pesky drug, Coumadin. Whether or not that is fluid loss or just plain old fat loss is unknown. Other developments from a wonderful visit with a family practice doctor however, include possible kidney damage, or kidney stones, plus the strong possibility of the onset of diabetes. It seems that if your heart won't kill you, there are plenty of other things that try. biggerbhoy@hotmail.com


Julie, July 24, 1999 - Hi, I live in the Atlanta area and have Kaiser insurance; Not much choice as to cardiologists. Has anyone had any experience with the Northside Cardiology Group? I have seen my cardiologist once since the hospital diagnosis but have been turned over to a PA since then. I have not made up my mind about her. She is nice enough but a little short on knowledge. Does anyone out there have any ideas? The Northside Hospital group is the only one approved by Kaiser. Also, I ran into a site which shipped my CoQ10 for half what I was paying and also had a great deal on St. John's Wort: http://www.vitamins.com/. My doctor will not prescribe them so I was paying full price. Julie3350@deja.com


Ruthie A, July 24, 1999 - Hi everyone, Well, another ER visit is under my belt. This time however, it was not directly caused by CHF. I am allergic to sulfa drugs and because I took a high dosage of Lasix since the beginning of the month, the sulfa in the Lasix was building up in my system. Yesterday the lid blew off and I had a terrible reaction, resulting in the ER visit. My doc changed my diuretic to Bumex, which also contains sulfa, but not in the amounts that Lasix does. My allergic reaction to that was even worse than the one with Lasix. So now I am drugged with Benadryl on top of everything else until I can get the sulfa out of my system. The major problem with all of this is that most diuretics (fortunately, not all of them) are related to sulfa drugs. So now I am trying a potent little drug called Edecrin. It's one of those saved for desperate moments when nothing else works. It's just one more thing to deal with in this ongoing adventure. I hope there is nothing in this stuff that I'm allergic to; this is getting old! Ruthie A. rlaba@preferred.com


Roy Burt, July 24, 1999 - Hi, I have been diagnosed with congestive heart failure. I had a heart attack in May of 1992 and a second one in December, 1993. Between May of 1992 and December of 1993, I thought I knew more than my doctor and I stopped taking the medications he had prescribed. Had I continued the medications, I may not have had the second attack. I have taken my medications regularly since December, 1993. This past spring I had a very difficult 3 or 4 months with a cough that simply would not go away, and several bouts with shortness of breath and complete exhaustion even after walking only a few yards. I made an appointment with my heart doctor, but about 2 weeks before I was to see him, the shortness of breath and walking problem disappeared. He has since changed my medications and I am not having any problems at all. He sent me for tests where they check the function of your heart and I am to see him again August 23, 1999. I note that the death rate from congestive heart failure is quite high, most not lasting more than 5 or 6 years. December, 1993, will be 6 years since my last attack. I am interested to correspond with people who have had this disease 7 years or more. I want to be realistic regarding how much longer I may have. rburt@enviroh2o.com


Joe S' July 24 reply to Susie T's July 22, 1999 - Hi, What I always say to myself when my memory lapses, and depression or paranoia sets in is, "This too shall pass" and it always does. As I wrote here a week or so ago, I stopped all my meds several years ago because everything they gave me caused depression, paranoia and memory loss. I felt that keeping my mental capabilities were far more important to me then lowering my blood pressure. However, things did get worse with my heart and I gradually changed my mind. Now I regulate my own meds and everything is fine. In fact, I almost think my memory is better then it has been in years. For months I couldn't even do a crossword puzzle, now I can finish one in record time. One thing that really helps when dizzy spells and memory loss hits is to lie down for about 15 to 20 minutes and just pray. I hope this helps a little. Joe S. JES@StevensonLighting.com
 
Jon's Note: I'm not scolding Joe (he's a big boy) but in general, self-regulating meds can be counterproductive, and sometimes lethal. Be careful. I recommend asking your doc before changing anything.


Al M's July 24 reply to Cindy M's July 21, 1999 - Hi Cindy, SS seems to always refer to gross earnings. The new $700 is a gross dollar amount. However, there are a number of examples in the booklet that could make that dollar amount higher. One such example is if you have to pay for prescription medications. If you pay, say $300 per month in med costs, then that amount is deducted from your gross amount to determine how much SS looks at. That would enable you to earn $1,000 per month (minus the $300, you still are at the $700 figure). Other examples include such things as if you have to rent one of those motorized wheelchairs, or if you are unable to drive and have to pay someone to take you to work.
     In general, if you accept part-time work and have no other allowable deductions, $700 is the magic number before your earnings begin to count in the "9 months of significant earnings." I did learn that if I were to take a full-time position, I would get both my employment money and my SSD for the 9 months period. Then they would look at my earnings, minus any deductions. If over $700 per month, then I would lose SSD, but after another 3 months. In other words, you receive your SSD for a total of 12 months at over $700. If, before the 12 months are up, you find yourself unable to continue to work, then getting back on SSD is said not to be difficult. After 12 months but before 36 months, it is a bit more difficult. After 36 months off SSD, it is a whole new application process.
     Medicare works the same way. What I did not get an answer to and did not find in the booklet was, suppose you work as a temporary employee with no benefits and earn in excess of $700 per month? What happens with respect to Medicare? That wasn't covered. I hope this helps. And Jon, if your pill was stamped with 85 I wonder if that is because you are taking the brand name pill and I am taking the generic, spironolactone? Everyone stay healthy. Al M. ajmiii@web-access.net
 
Jon's Note: Nope, mine's generic spironolactone also.


Hope M's July 24 reply to Jon's July 22, 1999 - Hi Jon, It seems like I am always taking less of things than the usually prescribed dose. I've tried the ACE inhibitors and the ARBs with too many side effects to tolerate them. The dose of digoxin that supposedly puts me in the therapeutic level also makes my heart rate slow to 37. The dose of metoprolol that is supposed to be therapeutic sends my BP down to scary numbers and makes me dizzy. My cardiologist tells me that it is the result we look for, not the numbers. Hence my concerns that even a dose 1/4 the recommended dose of Aldactone might affect me adversely. I already have uterine fibroids and can't help but wonder if a drug which has so many hormonal effects could make things worse. However, I'm only looking at me. As with all these medicines, they are tailor-prescribed for our individual circumstances. Hope. hlmcneil@earthlink.net
 
Jon's Note: Makes perfect sense for someone sensitive to many Rx drugs. :-)


Claudia S, July 24, 1999 - Hi, I have a question that I hope is not too trivial. I have lost about half of my hair, just since my diagnosis of IDCM 2 months ago. The only things that changed are the heart medicines: Coreg, Lanoxin, Lasix, and K-Dur. I thought it was stress at first but I have calmed down a lot and it is still really bad. I told my cardiologist and he thought it might be Coreg, of which I am now taking 50mgs total a day. I read all there is to read about Coreg and did not see a reference to hair loss. I am fairly new here so I don't know if this was covered before. I have read most of the old posts and do not remember seeing it there either. Someone told me to take zinc, because with the Lasix, I probably need it. My hair feels fine until it is wet, then it feels like straw. Honestly I am not that vain but about a week away from a wig here. I am hypothyroid too but had that checked recently and it is just fine, as it has been for over a year now. I do hope everyone is having many good days, and I am sure we are all hoping for cooler weather! Claudia S. CMSchm@aol.com


Robin Lynn, July 24, 1999 - Hello to everyone, and God bless this site. As I was reading the posts here tonight, I thought I might share some things with you. First to Pauline, I was a lot like you when I was first diagnosed in November of 1998. Along with the crying, I tried to be angry. Then God spoke to me in my heart and reminded me that life is a gift. Heart disease (or any other) is sort of a wake-up call, sometimes reminding us that we do not have control. Cry as much as you need to and remember that God has a plan. You don't have to like it but trust in Him and He will see you through this. I still cry at times but now I cry out to Him, and I feel Him holding me like a child. :-)
     To Angie, When my heart doc incresed my ACE inhibitor to a moderately high dose, I felt that I must be getting worse. Since it takes awhile for some meds to take full effect, the CHF symptoms came on slowly and I didn't realize it was the meds. Since my dosage has been decreased, my CHF symptoms are not as severe and I have some energy back. It may be a good idea to talk to your cardio about your symptoms and meds. It is worth a try. Good luck to you all and take care. God bless. Robin Lynn. Heartful99@mailcity.com


Jon, July 25, 1999 - Hi everyone, Barbara on the Loved Ones' forum asked a very significant question, so I am sharing the answer here. She brought to my attention that people may be confusing Aldactazide with Aldactone (spironolactone). They are not the same. Aldactone is an aldosterone-blocker and was used in the RALES study often mentioned here recently. It is a diuretic. One of its primary effects is increased passage of water and sodium out of the body.
     "Aldactazide" also contains another - different, added - diuretic in addition to the Aldactone in it. That diuretic is called hydrochlorothiazide. It is "more" diuretic than Aldactone alone, but Aldactone is a diuretic without it. Aldacatazide may have a number stamped on it: 25 or 50, which refers to the amount of both Aldactone and hydrachlorothiazide in it. Generic spironolactone may have different numbers stamped on it, according to the needs of the specific manufacturer.
     At the risk of repeating myself, low-dose Aldactone (25mg a day) - as used in the RALES study - is not used for its diuretic effect, which at 25mg a day may not even be noticed. For some reason they are not sure of, a low dose of Aldactone does significantly reduce risk of hospitalization and death for CHFers with class 3 or class 4 CHF. That's why doctors are prescribing it at 25mg a day, not for its diuretic effect. The summary is worth reading. Really. Jon.


Marsha L, July 25, 1999 - Hi Jon, This is my first post, although I read much of your wonderful site last summer when I was first diagnosed with CHF/IDCM, with an EF of 15%. My husband has made great use of the site, especially for new information about medications.
     Two years ago, I went to an allergist with shortness of breath and tightness in an area that might not be considered "chest" - way up on the right side near my shoulder. I was diagnosed with asthma. At that time I was a 53 year old woman with a history of allergies but also a history of occasional rapid heart beats and a family history full of heart ailments. I can't say much more, because we may sue this doctor for malpractice. Last year on July 13th, after seeing 3 different doctors over a period of 3 weeks, I went to the ER. The doctor heard gallops interesting enough to call in a cardiologist and I was admitted. I do not have asthma. After 9 days in the hospital, which included all the tests necessary to get me on the heart transplant list, I went home with a vast array of medications. My cardiologist is a good one and he has become my primary care physician. I thought I was doing pretty well and the cardiologist sent me to cardiac rehab. I was exercising 3 times a week and feeling better than I had in more than a year.
     On September 26, 1998, shortly after speaking before a group of parents of gifted kids, I went into cardiac arrest. I couldn't have done this in a better place; several of the parents were physicians and a group of about 6 of them saved my life. The paramedics had several more chances on the way to the hospital. I remember none of this. I was considered for a transplant at that time but the team didn't think the heart was good enough for me. I was in very bad shape for about 4 to 5 days, then the electrophysiologist implanted an ICD. My medications were changed somewhat and I started to mend again. During this hospital stay, my EF was measured to be 36%. I spent most of October in the hospital, because twice after being released, the device delivered jolts. The second time, the EP repositioned the leads and thankfully, I have not received more therapy from the ICD.
     My 55 year old husband retired in January to spend time with me and take care of me. This was terrific for me, especially since I had been told I couldn't drive until 6 months after the last jolt. There is much good news. When last measured, my EF was up, close to 40%. I am exercising 35 to 40 minutes 4 or 5 times a week. My daughter is engaged to be married and I am looking forward to the wedding. My doctor says I'm doing great, though he reminds me I will never be well, and will always take medications.
     Last month he took me off Coumadin. I'm taking 25mg Coreg, Hydralazine, amiodarone, Lasix, slo-K and magnesium oxide. All the ACE inhibitors caused terrible coughing. For my 55th birthday, my sister presented me with a "compliance award" (I had been telling everyone I deserved one!), which cited my "courage, optimism, discipline and will to be well." I am fortunate to be alive, as we all are, and enjoying every day. Sorry for the long post; I just wanted to share a happy story. Thanks for listening. mlan@whe2.nl.edu
 
Jon's Note: Has your doc tried you on ARBs to gain the benefit without the cough?


Richard ?, July 25, 1999 - Hi Everyone, This is my very first post here. What a wonderful website. In 1981, I was diagnosed with non-Hodgkins lymphoma and was treated with radiation and chemotherapy, which included Adriamycin. I was warned that I could develop cardiac problems as a result of the therapy and sure enough, that's what happened. I developed my first symptoms of heart failure in 1992 with progressive shortness of breath and enlarged heart. I had to drive myself to an ER in the middle of the night and ended up having my lungs drained and staying the weekend. I was put on Lasix, zaroxolyn and captopril, in addition to the digoxin and synthroid I had been taking since 1981. I didn't realize it but from 1981, after the chemo, until 1992, my EF was slowly eroding as a result of the Adriamycin toxicity. I managed to run 3 marathons in 1985, 1986 and 1987 but after that, noticed that I didn't have the stamina to do another.
     My EF still had not been updated by my doctors but in 1992 a MUGA showed an EF of 26-28. Believe it or not, I had few blood tests done between 1992 and 1996, when I experienced my next CHF incident. I wish my cardiologist had been a little more vigilant and maybe we could have controlled it better with different meds. In 1996, I felt lousy and went to Stanford Clinic to be checked. My EF was 14 and I almost went on the transplant list. I was a mess! My chemical balance was so screwed up it took 6 months for me to regain a measure of feeling good. During all this, from 1981 until now, I was employed full time; no interruptions.
     My present cardiologist is wonderful and watches over me like a hawk. I was placed on Coreg just after the trials were completed and I have participated in Valsartan trials. My EF improved to 27-29 but I couldn't handle the Valsartan and was recently removed from the trial. I am now on Digoxin, Synthroid, Coumadin, Edecrin, enalapril and Coreg. I am still working full-time and feeling pretty good. I managed to raise 2 wonderful children, Sharon (age 26) and Mark (age 23) but my marriage didn't survive. I am 51 and as my doctor calls me a survivor. Are there any other Adriamycin toxicity CHFers here? 'Nuff said for now. Never give up. Rick. rhuisman@pacbell.net


Pete E's July 25 reply to Claudia S' July 24, 1999 - Hi Claudia, I went through hair loss when I was first diagnosed. The first thing I should say is that it came back. It was a temporary condition that seemed to last about 6 months with me. I never had it quite as severely as you describe but it was there nonetheless. I could tell by the piles of hair that fell off my towel when it was drying. That was before Coreg was around so it must not have been that. My GP said that it often happens when people are very sick, regardless of the underlying cause. He said that there have been some studies but nothing conclusive about why it happens, just that it sometimes happens. Pete E. Peiden@skypoint.com


Al M, July 25, 1999 - Hi, This is about CHF only because of the site. It is a heads-up. A virus is being spread called Happy99.exe. I got it on an e-mail from someone responding to my post here. The person who sent it isn't even aware that he is sending it. It attaches itself to e-mails and newsgroups. The following url is a place to go to find out about it: www.geocities.com/SiliconValley/Heights/3652/SKA.HTM.
     Okay Jon, I give up. Your pill says 85. My pharmacist was the one who told me 15 and 45 were the only ones. (A thought - had your glasses checked recently?) <g> Stay healthy and one step ahead of 'em. Al M. ajmiii@web-access.net


Jon's July 25 reply to Al M's July 25, 1999 - Howdy-doo, Actually, I only wear my glasses when driving. Hmmm, might have to rethink that one. <g> About viruses, I never post virus warnings here and make an exception here because it was passed via an e-mail between readers of The Beat Goes On this time. Everyone please be aware that computer viruses via the WWW are spread by attachments rather than by e-mails. I don't open attachments with an .EXE extension unless I asked for them, and I run an up-to-date virus scanner at all times. It has caught viruses twice before they could damage our system. I strongly recommend that everyone do the same. You must update the virus definition files for your scanner at least once a week to remain effective. Jon.


Robin W, July 25, 1999 - Hi all, I finally found the time to sit down at the computer and write a post. As many of you know, I received my new heart on July 4th, very unexpectedly. The doctor had told me the Thursday before that 2 patients at another hospital had been upgraded to 1-A status and nothing would probably happen for me that weekend. I was also recovering from an infection in my central line. That had to be pulled and a new one was put in on Friday before the fourth. My parents spend the night of the third in my room with me since my mother had a feeling it might happen that weekend.
     When the head nurse called me at 9:00 AM on the fourth, I was still sleeping. I was thinking, "Why is Christine calling me now, she knows I don't get up until 9:30 or so." I thought she was calling to give some details about the fireworks party she was having in the lounge that night. When she told me they had a heart for me, I almost fell over. It was coming from Virginia, so she said I had time and then she called to tell the nurses. Everyone came into the room crying and laughing and trying to figure out what to do first.
     I started calling everyone but the first phone calls were short and to the point, "I'm getting my heart today." They told me I probably wouldn't go down until 5 or 6 PM. My sister from North Carolina rushed to the airport. She's a nurse and here at home with me now for a couple of weeks. It turned out we didn't have as much time as we thought. They called for me to come down at 2 PM. My sister's flight didn't land until 2:15 and unfortunately, I did not get to see her before they whisked me away. I remember nothing from the time I said goodbye to my family until I woke up early Monday morning.
     From all accounts, the doctors had the problems they had anticipated with me, namely bleeding. They had to use nitric oxide, which means I had to be on the ventilator longer. That was the hardest part for me. I kept gagging and only wanted them to take the tube out! I kept asking, when? Soon, they would say. I finally pinned them down and they said 3 PM. I didn't have my glasses but the TV was on and when I heard the music for General Hospital, I used my call bell like crazy until someone came and took it out! I felt 100% better.
     I spent one week in the ICU, which was hard because it is not a unit meant for alert, responsive patients. It is noisy at night and bright most of the time. There isn't a bathroom and you can really only move from bed to chair since you are attached to so many monitors and lines. Someone stayed with me every night. There was a Hyatt within walking distance so my family got a room for the week and took turns staying with me.
     I was very surprised with my recovery. It was in all honesty an almost pain free experience. I thought I would be in a lot of pain but that wasn't the case. It really wasn't as scary as I thought it would be. The first few days I had nausea and an upset stomach from the new meds, but that was to be expected. Now I'm fine as long as I take them with food. My first biopsy was done before I left the hospital and did show a 1-A rejection, which is nothing to worry about. My husband did go out and buy me a stethescope to listen to my heart. It beats so loud and strong now. It felt so good to leave the hospital after being there since May third. I want to thank all of you who e-mailed me, sent cards, visited and prayed for me throughout this ordeal. It means more to me that you know to have been blessed with so many heartfelt thoughts and prayers. All of you are in my prayers every night and if I can help anyone who is on the road to transplant, please e-mail me. Thank you all again. Robin W. jwilson@nb.com


Mickie C, July 25, 1999 - Hi, I have just been advised by my cardiologist to go on a low-carbohydrate diet, and he recommended the Atkins diet. I got the book and read it and while I am not a nutritionist or biochemist, there could be truth in what he says. However, the book reads a bit like it was written by a snake oil salesman! Also, when I searched the Internet for info on the Atkins diet, I got lots of hits from nutritionists and doctors warning that it was dangerous and that the dramatic weight loss was really just water loss and lowered caloric intake. I also found some references to people who developed liver damage. On the other hand, I found a site with a ton of positive, almost evangelical fervor folks praising the diet and its results, even though the regimen is very tough for the first 2 weeks. Does anyone have any knowledge of the pros or cons of the use of this or any low-carbo diet for CHFers? I would appreciate any info you have. I really enjoy your site! MickieCro@aol.com


Gaile, July 25, 1999 - Hi to everyone, I have 3 questions I hope someone can help me with
     My doc says I am becoming diuretic resistant. He has upped me to 80mg Lasix a day, but my ankles and feet remain quite swollen. When I press on them with my finger, the indentation just stays there. He also just put me on 25mg Aldactone. If we become diuretic resistant, what is in store for us in the future?
     I have gone to a massage therapist for years to help my lower back and relieve stress. She has suggested doing massage work on my lymph system, what she calls "manual lymph drainage" to help with my edema. Have any of you tried this approach or do you know anything about it? Can massage help circulation?
     My husband and I are going to Colorado for vacation in a few days (we live in Texas). We're going to an area called "The Fourteeners" due to all the 14,000 foot peaks. Of course, I do not plan to go up to 14,000 but the resort we'll be staying in is at 9,000 feet. I have told my doc about our plans and he thinks I'll be alright but he has advised me of the warning signs of pulmonary edema and said I need to call 911 and be helicoptered out if I develop symptoms. My husband and I used to do major mountain biking before my diagnosis of DCM/CHF and I really love the mountains. Has anyone gotten some altitude while having CHF and if so, how did you do?
     Thanks! gailec@netscape.net


Cecil's July 25 reply to Claudia's July 24, 1999 - Hi Claudia, I have gone through 2 bouts of hair loss, both times following a right heart cath (the one through the neck. Following the second one, I was also taking Coreg, which I had to stop because of side effects. The period lasted for about 3 months. It hasn't all grown back. When I asked my doctor (who is bald), he looked at me and shrugged his shoulders as if, why worry about something so mundane. Cecil3744@aol.com


Terry T, July 25, 1999 - Hi, Has anyone out there had any experience getting medical treatment for CHF through the V.A.? If so, I would appreciate an e-mail with some info. Thanks! terturn@aol.com


Lynn D's July 25 reply to Julie's July 24, 1999 - Hi Julie, I tried to send you an e-mail about the docs at N'side Hospital in Atlanta. It came back. If you want some names of CHF docs at Northside Hospital, send me an e-mail with your correct address. I hope this will help. lynndaniel@mindspring.com


Susie O's July 25 reply to Terry T's July 25, 1999 - Hi Terry, I go to the VA Hospital in Clarksburg West Virginia. I see a cardiologist and also my regular doctor. I was diagnosed in April of 1999 with CHF/IDCM. My regular doctor saw that I had developed a problem since November of 1998 and did not play games with me. He set me up an appointment with the cardiologist right away. I did have private insurance and went to a hospital outside to have the heart cath done sooner than if I'd waited to go to Pittsburg but the cardiologist was also affiliated with the civilian hospital. Like everyone else, I am on several different meds and I feel that I am improving. Drop me a line if I can help you any. Good luck. mrpaco975@aol.com


Linda O's July 25 reply to Gaile's July 25, 1999 - Hi Gaile, I was in Colorado Springs in February. I am not sure about the elevation. I did get in a hurry once to see a monument and it took more breath. If you are cautious and move slowly, hopefully you will do fine and have a wonderful trip. Linda O. norvalo@clarinda.heartland.net


Phyllis A's July 25 reply to Richard's July 25, 1999 - Hello to Richard and all, I was diagnosed with breast cancer in October of 1993 and I received 3 months of chemo prior to mastectomy, then 3 months afterward. I also received 7 weeks of radiation treatment 5 days a week. I finished all of my treatment in 1994 and also got married to my wonderful hubby. I returned to work in 1995 but my symptoms of CHF started during chemo treatment. I was diagnosed with asthma, which I truly have, in July of 1996. In March of 1997, I was rushed to the hospital with severe shortness of breath and chest discomfort, and received a CHF diagnosis. I have been on Disability since then. I am going to a cardiologist tomorrow (July 26) and will find out if I need a pacemaker.I hope I've helped to let you know you are not alone. God bless us all. phylcasurv@msn.com


Jon's July 25 reply to Gaile's July 25, 1999 - Hi Gail, I ran your questions by a friendly neighborhood CHF specialist and here's the info I received. He's quick to respond and I truly appreciate it. I am not actually quoting him and any mistakes are mine.
     Regarding diuretics: 80mg Lasix is an intermediate dose. 160mg twice daily is industrial strength. Lasix neutralizes salt and water retention in one part of the kidney. After awhile, compensatory hyperactivity in other regions of the kidney can offset the Lasix. Adding a second diuretic, even one that is not powerful when used by itself, can provide a major boost for the Lasix by blocking the area where compensatory activity is occurring. Adding 2.5 - 5mg metozalone (zaroxylyn) for this about 30 minutes before the morning Lasix can be a good idea.
     Mechanical compression therapy (massage) for edema: Support stockings (Jobst stockings) are used for severe edema, which is not that much different from the idea of massage. I have seen a photo from the 1940s where a spike was inserted into the lower leg of a terribly swollen patient and the fluid drained in a manner similar to the tapping of maple trees to develop maple syrup. In short, the massage might work as well as other forms of mechanical therapy for edema. If it does, the benefits should be seen very rapidly. The doctor I asked is not actually familiar with this procedure though, and had not seen or heard of it before now.
     Risks of high altitude are completely unpredictable. In this doctor's experience, patients who have severe lung disease have far more problems at higher altitude than those with severe but well compensated heart failure. A patient whose doctor is pushing the Lasix dose upward may not be well compensated and might be at higher risk. Driving down a couple of thousand feet may interrupt vacation plans but resolve a breathing problem. Jon.


Jack's July 25 reply to Mickie C's July 25, 1999 - Hey Mickie, Doctor Atkins and other low-carb diets are being recommended for diabetic control and weight control but I haven't heard of anyone recommending them for CHF yet. One of my doctors explained it in simplified form. They put your body into a state of ketosis so that the fat is dumped out of your body through urine, sweat and breath. You need to check your ketone level a couple of times daily to make sure you stay in ketosis. Some dox say ketosis is bad and others say it is a natural state but you have to stay off the fatty and salt-laden foods that are allowed on the diet. My kid, my 2 sisters and one brother-in-law are doing great on the diet but I can't manage to get it to do anything for me. Sure, I'm eating a lot more than I used to but my weight doesn't fluctuate at all. I did it for 3 months and now I have quit because I like baked potatoes with my steak! maddjak@hotmail.com


Jack's July 25 reply to Gaile's July 25, 1999 - Hello Gaile, There is manual lymph drainage but I wouldn't depend on a massage therapist to accomplish anything in that area. Some of you women who may have had breast surgery and lost part of your lymphatic system from it probably know about the manual drainage. There is a mechanical device that kind of "milks" your arm to push the excess fluid back into your body where it gets flushed out. It doesn't make sense that it would work for CHF because your entire body is having trouble removing the fluid and not just one part. Your heart is what pushes the fluid out of the tissues and it doesn't make any sense that massage would do anything but move it from one part of the body to another part. Daily excercise will help you though because it increases circulation in the entire body. maddjak@hotmail.com


Grace J, July 27, 1999 - Hi Everybody, I am really appreciating this Web site! I have been getting the dumb-blond diagnosis for 20 years and it's nice to know that I'm not crazy, or alone. One cardiologist (out of 3) did say that I had MVP 10 years ago. About 1 1/2 years ago between my second and third general anethesias, I became short of breath. After 3 to 4 months, I asked the doctor for a diuretic. I have been on Lasix for more than a year so I can breathe. After reading The Manual, I realize that I need to have my meds changed or something. I need to find a good CHF doctor in southern California, preferrably the Inland Empire, one who doesn't discriminate against younger people. Incidentally, I follow the Atkins' Diet and find that post-meal palpitations are eliminated. After a big carbo load, my heart tries to get out of my body. Thank you very much. graceijones@hotbot.com


Jana B, July 27, 1999 - Hi, First, I want to say Congratulations to Robin for being home! I bet just being home again was an experience. Now I want to ask others if they had hair loss after right heart caths? (it makes me dread mine) I am going to have to start Coumadin since I had that stroke and I don't want to gain weight. I just lost weight! Is there an alternative blood thinner they can give me? I was on Lovenox injections. Why couldn't I just keep giving those to myself? Also, has anyone out there who has had a stroke know if we ever get to go off blood thinners? Jana. JByers4u@aol.com


Richard H's July 27 reply to Phyllis A' s July 25, 1999 - Hi Phyllis, Thanks for the reply. That Adriamycin is nasty stuff but I'm still here to talk about it so I guess I can't complain. I have been thinking about going the Disability route with the theory, "Why should I work another 10 to 12 years, retire, and then drop dead?" Pretty morbid, but having worked since 1970, I have enough points to stop a freight train. I am between jobs at the moment but interviewing heavily. I want to do this once more only and ride this job out to Vahalla but the SSD is intriguing so I'm caught in the tug between the two. The only problem with working is that almost every Silicon Valley employer wants 50 or more hours a week and I can no longer do that without wiping myself out. That's why the new thoughts about SSD. Maybe I could work part-time.
     CHFers are in a quandry since usually we don't look sick and I find even my closest friends and family don't seem to understand the fatigue aspect of it. I can only imagine what the look on the face of the SSD person would be if I went in to get the forms. Oh, well, bop till you drop, eh? God has given me 3 life-giving miracles and I am eternally grateful to Him so time to stop moaning and get ready for today's interview. Bye for now, Gang! Richard. rhuisman@pacbell.net


Jane M's July 27 reply to Gaile' s July 25, 1999 - Hi Gaile, I am a breast cancer survivor who recently had breast reconstruction surgery with a tummy tuck included. The surgery was successful as far as I'm concerned. I did develop lymphedema in my arm after this surgery, although it can happen at any time after axillary node dissection. I am starting manual lymph drainage therapy this week, but not all massage therapists are trained to do the procedure. I am going to a rehab clinic that has two OTs who are trained to do the therapy. It won't do anything for regular edema. It is quite successful for people with damaged lymph systems. I hope this helps. Jane. jmerritt@iserv.net


Pauline, July 27, 1999 - Hi, This is just a brief note to say thanks to everyone who sent me mail after my last post. It was the perfect cure to the crying problem! I haven't done so since the morning I awoke to over a dozen messages of encouragement! Just a new way of looking at our situation: we are all dying - it is just that we have received the confirmation notice, but still not the date. chloe276@aol.com


John Len, July 27, 1999 - Hi all, Jack, Explain that mechanical device that pumps the fluids out of one part of the body into the mainstream to recirculate it. I have edema in one leg from my knee to my foot and after 2 specialists, ultrasonic scans and sonar scans, I still don't get an intelligent answer from anybody. The best I get is a compression stocking and water pills. I had the vein in that leg pulled for a bypass but that was in 1992 and the leg hasn't given me any trouble until recently. I am diabetic with neuropathy in both feet and over the past 10 years, it has been creeping up my legs to my ankle. Frankly, all the stories about whopping off the feet and legs of diabetics with neuropathy scares me, especially when sores pop out on the part of my ankle with edema. John. a_lenny6@hotmail.com


John Len's July 27 reply to Jack's July 25, 1999 - Hi Jack, On the Atkins' diet, don't the ketones produce acetone in the system? I read of one child in Diabetic Forecast magazine who was on a low-carb, high protien diet because of a rare condition not controlled by insulin but the level of ketones was carefully balanced with very narrow + or - . I bought Atkins' books years ago and hear positives and a lot of negatives about his diets. I even went the health food route and was in the Edger Casey library quite a bit, reading up on his cures. It didn't seem to make much difference. A neighbor of mine was a technical writer for the foundation, ate strickly organic, drank spring water, and so on. Yet she was allergic to insect stings and he died of cancer. I serviced the adding machines at the ARE from 1960 to about 1975) long before the ARE was world known. John. a_lenny6@hotmail.com


Phyllis A, July 27, 1999 - Hello to all my friends here, I just wanted to say thanks for your prayers. I went to the cardiologist today and he said that my EKG was unchanged and since my arrhythmias have decreased, I will just stay on increased medication of 360mg verapamil twice a day. It seems like I won't need a pacemaker as he thought I would if my irregular heart beats continued. Praise God. Thanks again; prayer works. phylcasurv@msn.com


Allen Cravener, July 27, 1999 - Hi, On Friday, July 23, I went back to the doc and got an echo. He says my heart continues to shrink and get better. However, my a-fib is still present and not changed at all. He also gave me the devil for gaining 15 pounds. Boy, this is one hard guy. I gained 15 pounds in 16 months and he is upset. I am too and will work toward getting rid of those excess pounds. I had a cardioversion that didn't work in December of last year. He has started me on Pacerone to try to straighten out that a-fib. He said that if the meds don't do the job then he wants to cardiovert me again and that if that doesn't work ,then it will be Coumadin the rest of my life. Oh well, it could be worse, I guess.
     Well, I took the perscription for Pacerone in to Eckert Drugs on Friday and they wouldn't fill it until they had a chance to talk to the doc. It seems that Pacerone has some nasty side effects and it interacts poorly with Lanoxin and Coumadin, both of which I take. The drug store wanted to remind the doc that some blood work needs to be done to monitor the Lanoxin levels as well as the INR of the Coumadin. I was very impressed with their concern. That aside, I picked up my Pacerone on Monday and started my treatment. Does anyone else use Pacerone? Would you share their experience with me? I am interested in how effective it was, and what side effects I should be watching for. Thanks, Allen Cravener. allen.cravener@penndata.com


Brenda H's July 27 reply to Mickie's July 25, 1999 - Hi Mickie, About the low carb diet, I also was told from a few people including my cardiologist, that it's not good for our hearts. He told me not to go on a special diets but instead, to try to cut back on calories. Good luck and let me know any info you get. I'd love to lose 15lbs! Brenda. Brendakay@wa.freei.net


Ben B, July 27, 1999 - Hi everyone, I am a culprit who was inadvertantly sending out the happy99.exe virus. I'm sorry if I got anyone. I hope it didn't hurt anyone's system. I usually don't open these attachments but now I know why I should be extra vigilant. This is another valuable piece of information I've learned here at the heart forum. Luckily, I emailed Al M shortly after my infestation and he knew what to do. bdbrinkman@juno.com


Doug Knuth's July 28 reply to Jana B's July 27, 1999 - Hello Jana, From reading your post, it seems obvious that you are rather concerned about gaining weight from taking Coumadin. I was one of the people who originally posted the possibility of Coumadin causing the weight gain. First of all, Coumadin is the best anticoagulant, short of heparin, to my knowledge. It really increases one's odds of not stroking out or having a heart attack, etc. So for now, try to relax about the weight issue. It may not have any effect on your weight. I haven't exercised as much and had been eating more than I used to, so keep an open mind about it and relax, take the Coumadin! I know that in my case, I can figure on being on it for the rest of my life. Good luck to you and to all of you at Jon's Place! Doug Knuth, DCM, CHF, hypertension, Antiphospholipid Antibody Syndrome, glaucoma, let's see, what else? gknuth@earthlink.net


Harry W, July 28, 1999 - Hi everyone, I don't post much and haven't in some time, but have some good news to share. I just got out of the hospital with an episode but the cardiologist (the best I have ever been to) said it definitely wasn't my heart but something else. An echo showed improvement and the x-ray showed my heart size had gone down. It is not now grossly enlarged but at the upper limit of normal, my EF is 55 (normal) and 65 under stress. My lungs are grossly clear. There seems to be one problem on the horizon though, my diastolic pressure is way too low; it hangs in the 40s. Now we try to raise it without disturbing the systolic, which is great, maybe. I read somewhere that CHF is never stable, it is always improving or getting worse. I am happy that I am now going through a phase where mine is improving. I hope it lasts and lasts. Harry. hwweems@phoenix.net


Harriet Prince, July 28, 1999 - Hello there everyone, I am brand new here and am delighted to find you. Sometimes it feels lonely and you think you are the only one. I am reading your posts with great interest and prayer. I am working with a half a heart, even after double bypass in January, l998, diabetes, severe depression, and a multitude of other ailments. My cardiologist says we will look at the bigger picture and I know my life is in Another's hands. I'm just going with it. hprince57@aol.com


Phyllis A's July 28 reply to Richard's July 27, 1999 - Hi Richard and all my friends, Yes Richard, I am also glad to be alive after cancer treatment but we are human and God knows His children will complain from time to time. I had no choice but go the SSD route. I also have asthma and I worked at a clinic and was always at the nurse's station for fatigue and breathing treatments so my doctor filled out papers for me to go out. I also worked for years. As a matter of fact, I went into the SSD office looking like I was not sick and when the clerk saw that I had worked since 14 years old, she said I had enough points for a few people. Don't work till you drop. Stop and rest, we owe it to ourselves. God bless. phylcasurv@msn.com


Renee M, July 28, 1999 - Hi everyone, Good news! I got a letter from SS that they are continuing my Disability. I was so relieved because I know I cannot work and didn't know how I'd manage if they cut me off. I want to thank all of you who were thinking of me and praying for me recently. I hope everyone is doing well. I keep all of you in my thoughts and prayers every day.
     About those low-carb diets; when I found out I was diabetic, I checked into them. I was told by many sources that you need some carbs in your diet. Also, too much protein in your diet may lead to kidney problems. It's not the carbs we eat that cause the problems, it's that we eat too much of them and all the wrong kinds (too much processed food). Any diet that eliminates a food group is probably bad for you; even if you do lose weight, you're gonna pay for it later. The best eating plan is a balanced one that includes all the food groups. Low fat, low salt, low sugar and portion control are the key to losing weight and keeping it off. I am not just rattling on here, I have lost 65 pounds in the last 5 years and kept it off. This was no easy task and it's a daily struggle to continue. I thought that maybe those low-carb diets had some merit and decided to try it just to make sure I wasn't missing something. Well, I gained 5 pounds and felt lousy the whole time I was on it! Yeah, it was great to eat steak and butter but my system just couldn't handle it.
     Just a note: my blood sugar and cholesterol were great on the low-carb diet, but something was happening to my system that was not good. My sugars and cholesterol are just as good with my current eating plan described above, and I feel a lot better. I do not eat tasteless food or things I don't like either. It just takes some creativity and reading a lot of food labels to keep things interesting. I know this is long but we never hear about the downside of these low-carb diets. You can lose weight a lot of ways but many of them are bad for you or have long term effects that you don't want. I figure that we have enough to contend with now and don't need problems we can avoid. I am not pretending to be an expert in nutrition but a lot of the knowledge I have gained has come from research, nutritionists, physicians, and other health professionals. I hope this will help some. Remember, we want to be as healthy as we can, not just lose weight. God bless you all. Renee M. AUNTONAY@aol.com


Jill S, July 28, 1999 - Hi, Not to worry folks but I have heard from a friend who is a high level manager with SSA, that anyone who works during the first 2 years of SSD gets flagged and they review the case yearly. I would hesitate to work at all until I had the time under my belt. Jill. jilschro@jps.net


Jill S' July 28 reply to Gaile's July 25, 1999 - Hi Gaile, I would be very careful at that elevation with the symptoms you are having. I was in Yosemite right before my diagnosis and stayed at 2 lodges, one at 8,000 and one about 14,000. It was totally miserable. I couldn't breathe, was short of breath just doing nothing. Please be careful. My doc has suggested I try going to up to the mountains a little at a time to see what I can tolerate. We live in a valley between San Francisco and Lake Tahoe. He says to go up to 4,000 feet and get around and walk, stay there for 1 to 2 hours, then go up a little farther. The good thing is that you can get back down to sea level in an hour. Good luck. Jill. jilschro@jps.net


Danny's July 28 reply to Allen C's July 27, 1999 - Hi Allen, I too have a-fib. I also have had 2 cardioversions and am on 400mg Pacerone. I have been on Pacerone since January of 1999. My doctor told me my heart was so large another cardioversion wouldn't help. I took my Pacerone percription to WalMart's drugstore. They would not fill it until speaking to the doctor. As for side effects, I am on so many meds, I don't know how anyone can mix meds and figure side effects! I do know that if a med hurts me (I'm done with it) right then and there! We have to trust in the Lord, use our own judgement, and live one day at a time, pacing each step and having a doctor we trust. Take care. Dan. DLS50@WebTv.Net


Leland Y, July 28, 1999 - Hi Jon, It's been a great 2 weeks. After receiving the good news from my MUGA results, we took a short vacation to Tahoe-Reno, a 1000 mile round trip by auto, with me doing 30% of the driving. We took plenty of pit stops, taking our time and resting. The only problem with traveling was diet. It's difficult to ask for no sodium food. Since we were staying with our son, we were able to control the diet at his house for breakfast and lunch. Going out for dinner at night was a different story but I managed to survive without using salad dressing, avoiding heavy pasta dishes, eating smaller portions and watching fluid intake. All in all, I did very well, even in the high altitude. Reno is 5500 feet above sea level. Tahoe and the Donner Pass is at 8000+ feet. I had no SOB at all. Today is the third day back to Huntington Beach. I seem to be having more PVCs than normal enough to lie down for a nap, which I haven't done for well over a month. Has anyone experienced excessive PVCs (probably from tiredness)? It's difficult to lie down and difficult to sit up, due to the pounding, kind of like the heart is trying to beat its way out of my chest. I hope tomorrow will be a better day. Leland, EF 42% now. LLYEE@surfside.net
 
Jon's Note: The trip sounds like fun! I had PVCs for a time and hated them.


Brenda H, July 28, 1999 - Hi all, Phyllis, That's great news. I'm happy for you. Keep hangin' in there! Also, what is The Atkins' diet? I hope everyone is enjoying the summer, we finally have one here in the Northwest! By the way, does anyone ever have any ear pain? God bless. Brenda. Brendakay@wa.freei.net


Hope M, July 28, 1999 - Hi, I wanted to share my experience with Coumadin once again for those people who are afraid of weight gain. I had my mitral valve replaced in 1994 and have been, and will be, taking Coumadin for the rest of my life. Without any special dieting, I now weigh 14lbs less than I did prior to surgery. My activity level has not increased since surgery either, so that would not account for the weight loss. I have CHF, with an EF of 26%. Through the Mended Hearts group that I attend, I know other people who regularly take Coumadin and no one has ever mentioned this drug affecting their weight. Hope. hlmcneil@earthlink.net


Susan P, July 28, 1999 - Hi Friends, My posts are a lot like yo-yo instant replays these days - one day I'm in rhythm and the next day I'm not. Today I'm ticking like a shiny, new Timex watch and I'm starting to feel good again. Monday (7/26) I got cardioverted for the sixth time in 1999. I feel like a Pop-tart or, more accurately, a GE light bulb. I asked my doctor if there was a limit to how many zaps I could take (lots of x-rays and your eyes glow!). He said the zaps really don't hurt the heart but they are kind of hard on the rest of my bod; been there, done that. I also asked if there were any little monsters lurking in the shadows that I should expect to jump at me in the near future. He said no and that the replacement valve surgery and multiple arrhythmias were the worst symptoms of "advanced rheumatic heart disease" and if I could get in rhythm and take good care of myself, I had a good shot at a reasonably normal life for the next 10 to 15 years. Wow, no doc has ever been bold enough to give me any hope of being around that long! Anyway, I'm celebrating a perfect pulse of 62 with a BP of 105/68. I was pretty depressed when I posted a couple of weeks ago and I'm happy to say the depression is all gone! I hope every one of you gets a super report like this one some day. spower@apsllc.com


Ben B's July 28 reply to Jill S' July 28, 1999 - Hi Jill, Do you know if this is 2 years from approval, or from date of disability? This is another outrageous thing about SSD. I used to believe that Disability was only for people who absolutely cannot work and that anyone who feels they might be able to work ought to try but the SSA is slowly making me change my mind. I was hoping to be able to try a trial work period before approval but they told me I'd have to start all over again. Now I find out I have to wait 2 years after approval. By that time, I'll probably have progressed to being even worse than I am now. Even though I am okay financially, there are sometimes I feel like I don't deserve the Disability money, even though I only have a 20 to 25 EF. I would encourage anyone who really wants to try to work without sacrificing their security to write their representatives to try to change this system. I guess they want everyone to be unproductive and not even try. bdbrinkman@juno.com


Marc S, July 30, 1999 - Hi gang, I've got an odd one for you. For the past month or two, I get a strong whiff of ammonia every now and then. Problem is, I'm the only one who smells it, and it seems quite strong to me. Does anyone else have this happen? I am wondering if it might be a side effect of one of my many meds. Either that, or I'm losing quality function of another body part. :-) Prayers to all and Pauline, I'm glad you're in better spirits. You're in good company: God and this group of folks. marcntimi@wvi.com


Ben B, July 30, 1999 - Hi, I'm responding to my own post to make sure nobody feels I was saying that people are unproductive on Disability. I was just speaking about the way I feel sometimes. I know many people do great things on Disability, and many are too sick to do anything. I didn't want to offend anybody. bdbrinkman@juno.com


Linda, July 30, 1999 - Hello out there. Is no one from the Pensacola, Florida area? I was inquiring for a cardiologist in the Pensacola area familiar with CHF. Can anyone help? episcola@p'cola.gulf.net


Jill S' July 30 reply to Ben B's July 28, 1999 - Hi Ben, I believe it is from the date of approval, since that normally will trigger when the review period is. Of course, SSA is governed by different rules depending on what federal district you are in. It has to do with the juridisction of the federal courts where many of the interpretations of the law are made. This will explain to those who haven't worked for SSA why a federal program can be different depending on where you live. For example, at one point in time when I worked there, the federal court decided that the mental cases in our area had not been adjudicated properly and all those cases with a mental and physical component had to be reviewed and readjudicated, but it only applied to our district. The manual for adjudication when I worked there 10 years ago was about 7 inches thick! No wonder I only lasted 18 months. Actually, I left because I had too much medical knowledge and knew I was being forced to send people back to work who couldn't work or to jobs that didn't exist. jilschro@jps.net


Ginger's July 30 reply to Leland Y's July 28, 1999 - Hiya, I have had PVCs from day one with this DCM. I hate them. I ended up having an EP study done cause they got so bad but in the end, I was told they were harmless. I was told that if they changed a lot to let my doctor know. You might want to let your doctor know about the change in them, Leland. They are worse for me if I am tired or stressed, which I am both of lately so I have them a lot. I'm glad to see your improvements and hope your PVCs calm down. They may be harmless but they sure are scary. Hugs, Ginger. mystery@laker.net


Jon, July 30, 1999 - Hi everyone, A subcontractor for a company involved in manufacturing various healthcare products often used by CHFers has asked me to pass on an Url. It is a simple online survey designed to help the company tailor its efforts towards CHFers. It's free and does not require personal information. You can sign up for some $10 Amazon gift certificates after filling out the survey, but that will require personal information. The Url is www7.kellogg.nwu.edu/bloomfield. Jon.


Jon, July 30, 1999 - Hi again, I have decided to do an FAQ page about CHF. My own CHF doc suggested it and he is going to provide the answers for the page. This will be sort of a supplement to The Manual, which will remain the primary guide on my site to coping with heart failure. Anyhow, I will be collecting questions from now on, and giving them to my doc one or two at a time. He'll send me the answers via e-mail and I'll put them up in batches. Please send me any questions you'd like to see answered on such a page - simple or complex, highly intelligent or dumb - all questions welcome. :-) I can't guarantee they'll all make it to the page but I imagine most will. Thanks. Jon.


Phyllis A, July 30, 1999 - Hello Jon and Friends, Just dropping a line to say stay cool over weekend. It's going to be very, very hot. Stay cool, please. My hubby and I are going to Atlantic City. I love the beach but if an umbrella is not enough, I will stay downstairs at the casino. We will enjoy just resting. My hubby is a workaholic, so he can use the rest and me too. We'll be back in a few days. phylcasurv@msn.com


Danny S, July 30, 1999 - Hi Everyone, I've been having a slight problem and would like to know if anyone else has it. My vission blurs. It will blur for a second or two, then it's ok. It may blur in and out several times, then it clears up. Is anyone one other than myself having this problem? Thanks. DLS50@WebTv.Net


Randy, July 30, 1999 - Hello all, I am so glad to have come across this site! I am 36 years old and was diagnosed with DCM in December of 1998 with an EF of 35%. My first reaction was "cardio what?" I have learned a lot from lurking at this site and hope to learn more. I am in the Air Force and currently stationed near Frankfurt, Germany at Rhein-Main Air Base with my wife Suzanne and two sons, Chris and Josh. I had to meet a medical board and they determined I was fit for duty, something I am profoundly grateful for. If there is such a thing as an upside to this happening, it's that I've come to see what a wonderful family I have. My wife is a beautiful, strong lady and I'm extremely fortunate to have her (at least that's what she makes me tell folks!). <g> Ya'll take care and I'll continue to lurk and occasionally post. surajoch@hotmail.com


Jon's July 30 reply to Gaile's July 25, 1999 - Hi Gaile, As Gino wisely pointed out to me, diet is a critical factor in how much diuretic is neeed to keep us from swelling up! Too much sodium intake and we're just fighting our own meds. So be sure the diet is really low sodium all around as well! Jon.


Randy 2, July 30, 1999 - Hi, I just came home from 5-way bypass surgery and I am looking for people on line to chat with about our condition. I'm in need of support from someone who has gone through this. My heart attack was on July 15. Thank you. Randy. randy@vallnet.com


Joy R, July 30, 1999 - Hi, It seems that with the hot weather it is much harder to function than before. I find if I go outside, just lifting one foot in front of the other is a chore, like my extremities are weighted down. My breathing is worse, too. I have been heavy-chested and short of breath. If not for my IV dobutamine, I don't believe I would make it one more day. Are othes affected this badly? I read with interest all the diet information and Jon's post about sodium intake. I never realized why I didn't have to take a lot of Lasix. I now realize it's because my sodium intake is so low. I am on hyperlimentation, which is IV nutrition and I have blood drawn each week. They are always adding more sodium or other ingredients, depending on my labs. Of course, I guess it is because I don't get in a lot of fluids either. I just never thought about the sodium before. My cardiologist liked me to be a little more hydrated. He says it helps my heart more than being a little dehydrated, which was my usual state before the hyperalimentation. Just my thought for the day. Jon, I love to visit your site and see how all the others are doing. Joy R. wapalaremi@home.com


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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