The paperwork never ends The Archives
April 1-15, 1999 Archive Index CHFpatients.com

Ruthie A 4-1     update, clonidine & beta-blockers, moving & more
 
Felix O 4-1     CPAP for apnea, side effects, seek others
 
Luc D 4-1     missing Liz J
 
Jamie S 4-1     update, MUGA, EF & more
 
Ginger 4-1     Gino to be at Chat Sunday & more
 
Gerald F's 4-1 reply to Felix O's 4-1     CPAP machines, apnea & more
 
Bill D's 4-1 reply to Audrey's 3-31     info, inspiration & more
 
Bill D's 4-1 reply to Sara ?'s 3-31     info, living with CHF & more
 
Bill D's 4-1 reply to Kim ?'s 3-31     welcome to Jon's Place
 
Robin W's 4-2 reply to Brenda H's 3-31     Coreg dose, questions
 
Carolann S 4-2     intro, what questions to ask doc? & more
 
LeeAnn D 4-2     update, depression zappers
 
LeeAnn D 4-2     hey Bill, massage questions & more
 
El R 4-2     update, lifestyle & getting better questions
 
Sara ? 4-2     still struggling, holiday wishes
 
Sara ? 4-3     questions
 
Ben B's 4-3 reply to Carolann's 4-2     are you on an ACE inhibitor?
 
Virginia P 4-3     Vesnarinone
 
Jon's 4-3 reply to Virginia P's 4-3     Vesnarinone
 
Bill D's 4-3 reply to LeeAnn D's 4-2     massages, exercise & more
 
Bill D's 4-3 reply to El R's 4-2     getting the whole picture
 
Bill D's 4-3 reply to Carolann's 4-2     welcome, CHF info & more
 
Linda L 4-3     hi, update & more
 
Lynn D's 4-3 reply to LeeAnn D's 4-2     massages
 
Anne M 4-3     moxinidine, clonidine & some questions
 
Kim S' 4-3 reply to LeeAnn D's 4-2     depression zappers, Coreg dose increases
 
Claire F's 4-3 reply to Gwendolyn's 3-31     hot peppers for GI problems & more
 
Jay Q 4-3     machine heart rate readings
 
John ? 4-3     diagnosed with CHF, questions
 
Bill D 4-3     pooter upgrade & more
 
Brenda H 4-3     Coreg & depression question
 
Ruthie A's 4-4 reply to Bill D's 4-3     software, doing good & more
 
Jim H's 4-4 reply to Pete E's 3-22     statistics, new treatments & more
 
Leland's 4-4 reply to Brenda H's 4-3     adjusting to Coreg
 
Luc D 4-4     Easter wishes
 
Sara ?'s 4-4 reply to John ?'s 4-3     go to a cardiologist ASAP & more
 
Debbie R's 4-4 reply to Brenda H's 4-3     Coreg depression will get better
 
Will W 4-4     Easter wishes
 
Ben B's 4-4 reply to Jay Q's 4-3     do you have any irregular heart beats? & more
 
Julie Kendall 4-4     am I cured? seeking a friend & more
 
Jon's 4-4 reply to Julie Kendall's 4-4     like a fool, I'm jumping in
 
Della R's 4-4 reply to John ?'s 4-3     lots of bugs going around & more
 
Marion Godzik 4-4     intro, EF vs how I feel & more
 
Bill D's 4-4 reply to Ruthie A's 4-4     did I do that? & more
 
Bill D's 4-4 reply to Jay Q's 4-3     Coreg, heart rate & more
 
Ginger's 4-5 reply to Ben's 3-14     PVCs, chat & more
 
Lee R's 4-5 reply to Julie Kendall's 4-4     EF vs how you feel & more
 
Lee R's 4-5 reply to Marion Godzik's 4-4     bad days, EF vs how you feel & more
 
Duane 4-5     rising EF vs how you feel, update & more
 
Lynn D 4-5     rising EF & Coreg, need definition
 
Terry T 4-5     Coreg experience & more
 
Amy G 4-5     seek CHF info & correspondence
 
Jim H 4-5     intro, questions for doc & more
 
Bruce S 4-6     Coreg & does anyone like gardening?
 
Tony P 4-6     seek info on drug trial
 
Jon's 4-6 reply to Tony P's 4-6     drug trial possibilities
 
Christine 4-6     anxiety attacks, herbs questions, & more
 
Don T 4-6     intro, vitamins & supplements, SOB & more
 
Lee R's 4-6 reply to Amy G's 4-5     PPCM, CHF info, resources & more
 
Lee R's 4-6 reply to Jim H's 4-5     don't be a stranger
 
Linda O's 4-6 reply to Duane's 4-5     back pain & CoQ10 question
 
Kelinda Spears 4-6     to Sunny
 
Kelinda Spears 4-6     to Amy, postpartum cardiomyopathy
 
Valerie D 4-6     intro, Silver Springs doc, Coreg questions
 
Pete E's 4-6 reply to Julie K's 4-4     EF, energy level & more
 
Pete E 4-6     check out online store & supplements
 
Gail B 4-7     intro, high BP questions & more
 
Susan P 4-7     update, valve job, a-fib & more
 
Ella R 4-7     seek LBBB info & more
 
Candy 4-7     has anyone had surgery post-CHF? questions
 
Bill D's 4-7 reply to Don T's 4-6     CHF & SOB info, docs & more
 
Bill D's 4-7 reply to Valerie D's 4-6     CHF info, procedures & more
 
Bill D's 4-7 reply to Christine's 4-6     CHF info, diabetes, sleeping & more
 
Jack's 4-7 reply to Christine's 4-6     supplements, herbs, dangers & more
 
Marion G 4-7     hi to everyone, thanks, work questions & more
 
Kim S 4-7     seek SSD personal experiences
 
Julia H 4-7     PPCM, seek doc & more
 
Bruce S' 4-8 reply to Marion G's 4-7     athletics, gardening, thanks & more
 
Bill D's 4-8 reply to Gail B's 4-7     K-dur side effects & more
 
Debbie R's 4-8 reply to Marion G's 4-7     coping, nitro question & more
 
Linda O's 4-8 reply to Candy's 4-7     CHF & healing, & more
 
Kristine Conner 4-8     asking advice for AHA CHF site
 
Ben B's 4-8 reply to Gail B's 4-7     question about sweating
 
Jon's 4-8 reply to Ben B's 4-8     sweating pre-CHF
 
Louise N 4-8     muscle aches & headaches - any ideas?
 
Lori Wilson 4-8     post-surgery update
 
Joy R 4-8     thanks for being here
 
Marty's 4-8 reply to Kim S' 4-7     SSD process vs working
 
Malcolm 4-8     intro
 
Della R's 4-8 reply to Kim S' 4-7     SSD & to Marion G
 
Milo's 4-9 reply to Mark E's 3-13     thanks, glad to be here
 
Milo's 4-9 reply to Jon's 3-13     what is restenosis
 
Jon's 4-9 reply to Milo's 4-9     restenosis
 
Milo's 4-9 reply to Bill D's 3-12     good one
 
Milo 4-9     faith, coping & debate
 
Jon's 4-9 reply to Milo's 4-9     faith & debate
 
Milo's 4-9 reply to Gene W's 3-7     work hours, valves & more
 
Milo's 4-9 reply to Jeanette W's 3-11     dealing with emotions as well as illness
 
Pat D 4-9     intro, glad to be here
 
Jamie S' 4-9 reply to Lori Wilson's 4-8     hope all goes well & more
 
Gerald Fansler's 4-9 reply to Debbie R's 4-8     nitro, exertion, edema
 
Jill S 4-9     Coreg & weight gain questions
 
Mac 4-11     angina & meds, & more
 
Jana B 4-11     intro, Disability question & why don't family get it?!
 
Doug K 4-11     e-mail address change, update & more
 
Marty's 4-11 reply to Jack W's 4-10     praying for you & your family
 
Christy Marshall 4-11     intro, questions about working, vitamins & more
 
Marion G's 4-11 reply to Jack W's 4-10     sending prayer, talk of death with family & more
 
Jack's 4-11 reply to Pat L's 4-10     weight gain and Coreg
 
Bill D's 4-11 reply to Brenda Snow's 4-10     welcome, forum birthday & more
 
Bill D's 4-12 reply to Cooper B's 4-10     welcome, heart transplant bios & more
 
Bill D's 4-12 reply to Jack W's 4-10     caring for your mom
 
Paul M's 4-12 reply to Marion G's 4-10     5 year statistic & final arrangements
 
Jane M's 4-12 reply to Christy M's 4-11     asthma & CHF, working full time with illness
 
Sara S' 4-12 reply to Jana B's 4-11     relatives who don't accept your illness
 
Carolann S' 4-12 reply to Jana B's 4-11     relatives who don't accept your illness
 
Joe D's 4-12 reply to Pat D's 4-10     numbness in arms and legs
 
Rick M's 4-12 reply to Jana B's 4-11     relatives who don't accept your illness
 
David A 4-12     Coreg and blood pressure questions
 
Norman 4-12     what is CHF? & more
 
Jo 4-12     Disability, new med question & what is EF?
 
Audrey 4-12     thanks Lee, update & more
 
Cathy P 4-12     still here, questions
 
Lee R's 4-12 reply to Jana B's 4-11     Disability, relatives who don't get it & more
 
Lee R's 4-12 reply to Christy M's 4-11     ICDs & arrhythmia, resources & more
 
Ginger's 4-12 reply to Jana B's 4-11     chat room is up, family help & more
 
Milt's 4-12 reply to Christy M's 4-11     working with CHF questions
 
Melvin 4-12     nausea & vomiting - anyone else? & more
 
Milo's 4-13 reply to Steve S' 3-31     echo & EF, lower back & legs
 
Milo's 4-13 reply to Gwendolyn's 3-31     all you want to know about bowels
 
Jana B 4-13     a poem
 
Bill D's 4-13 reply to Robin's 4-12     nausea & loss of appetite with meds
 
Marion G's 4-13 reply to Melvin's 4-12     stomach problems, diet, coping & more
 
Tom S 4-13     SSD review
 
Roger G 4-13     update, headaches
 
Roger G's 4-13 reply to Gail E's 4-10     tolerating Coreg
 
Cooper's 4-14 reply to Bill D's 4-12     transplant wait, artificial heart
 
Jo 4-14     EF, DCM, The Manual, Ruthie A
 
John B 4-14     endothelin blocker trial
 
Jon's 4-14 reply to John B's 4-14     endothelin blocker trial
 
Robin 4-14     SSD question
 
Al M 4-14     sweating, weight gain & loss
 
Jon 4-14     weight gain
 
Jim H 4-14     update, diagnoses & more
 
Ben B's 4-14 reply to Jo's 4-12     statistics, meds, new treatments & more
 
Angie H 4-14     intro, seek CHF info
 
Sara ? 4-14     update, do hearts ever get normal? & more
 
Heather S 4-15     update & then some
 
Maggie S 4-15     intro
 
Bill D's 4-15 reply to Jon's 4-14     cut my Coreg back for another reason
 
Bill D's 4-15 reply to Robert F's 4-14     living with CHF a long time
 
Bill D's 4-15 reply to Angie's 4-14     learning about CHF
 
Chuck 4-15     will I be normal again?
 
Ruth ? 4-15     intro, seek correspondence
 
Steve S' 4-15 reply to Milo's 4-13     leg pain, EF & more
 
Renee M's 4-15 reply to Jack W's 4-10     sympathies, possibilities


Ruthie A, April 1, 1999 - Hi everyone, I had my first appointment with my new cardiologist in Vanderbilt's heart failure program. Jon sure is right: If possible get to a specialist in CHF. It makes all the difference in the world! I didn't have to explain things anymore, and that in itself was a big relief.
     Remember the clonidine discussion? I was taking it along with 100mg of atenolol and having some pretty bad side effects. Last Friday I was given a plan to come off the clonidine and the withdrawal effects were worse than taking the stuff! I was so discouraged and so sick that I wanted to start on them again. Nearly a week later I am doing much better and most of the symptoms have disappeared. If any of you are taking clonidine with a beta-blocker, talk to your doctor about changing to some other med. This one's not one to play around with!
     On a final note, I am moving again after only 6 months in Nashville. Hubby got a fantastic new job in Johnson City, Tennessee and we move in 2 weeks. I will be offline for at least a month or so with no e-mail, so your prayers are the only support from here that I will have. But I will be starting cardiac rehab the first week of May, so that will help. I'm looking forward to both the exercise and the opportunity to make new friends. Take care, y'all, and Happy Easter. Ruthie. rlaba@mindspring.com


Felix O, April 1, 1999 - Hi Everyone, I was diagnosed with Obstructive Sleep Apnea three weeks ago and started CPAP therapy. Using a CPAP machine to sleep is kind of uncomfortable but the benefits derived from this therapy are worth all the trouble. I now have more energy, can sleep well, and the depression is gone. My mind is more alert and my hart is getting some rest too. I am suffering from constipation in the mornings. It seems that my stomach has been filled with air. I have been told this might be caused by mouth breathing during the night. Is this true? Does anybody out there have any experience with CPAP therapy? I hope this problem disappears once I get adjusted. Any comments or experiences regarding CPAP therapy for people with DCM will be appreciated. God bless you all. Felix O, age 34, DCM. felixor@prtc.net


Luc D, April 1, 1999 - Dear friends, I would like to say that we have lost a very good women on our site and I would ask for a prayer not for me, but for Liz. She gave me so much courage and support. I have to say that I am very sorry she's with God now. We all could learn something from her. I hope we can go on. Just like her, we all must give our friendship and support to other people. We are not alone with our heart disease. There are lots of other people who didn't find our site and don't get the courage and support from us. Thanks for listening to me. Sincerely, Luc from Belgium. Luc.Deseins@ping.be


Jamie S, April 1, 1999 - Hi, The MUGA went well. It was getting there that didn't go quite right. I got my first ticket. The fancy machine tells you the EF. Well, the technican said, "You never had a problem with your EF, right, because it is 71% and everything looks good." I gasped. 71%! I'll get the preliminary results in a week; wall function and all that stuff. I've been off Coreg since February 26, 1999, so hopefully that is long enough to have it out of my system and the work my heart is doing, it's doing on its own. My EF was 52% in July of 1998, 35% in February of 1998, 30% in December of 1997. Just for some of you out there who wanted to know but I didn't get back to you. G'Day everyone. Jamie. JamieDan@prodigy.net


Ginger, April 1, 1999 - Hiya's, I hope everyone is doing ok. Gino, our friendly cardiologist, will be in the chat room on Sunday night at 8pm Eastern time. I realize that it is Easter but it is the only night he will have free since his shift is not on our regular nights right now. I will be there and hope to see a few of you, too. He looks forward to answering questions for us. I wish all of our own docs were like that. Stay well, ya'll. Whoever it was that wrote they have had cardiomyopathy for 30 years, thanks for sharing that. It's very uplifting to hear it. I look forward to hearing more from you and maybe you can make it to our chats that we have 3 times a week. Hugs, Ginger. mystery@laker.net


Gerald F's April 1 reply to Felix O's April 1, 1999 - Hi, I've had sleep apnea since my early 30s. I am now 62. I was diagnosed and treated in 1988. I had a heart attack in 1990 and 1997. I once weighed 260 and now weigh 185. I was diagnosed with CHF in 1997 but had symptoms since 1994. Sleeping laying down with apnea and CHF is a trick. When I started taking Lasix (80mg morning and evening), I could sleep laying down. I can gain or lose 10lb in 12-36 hours. I take Zaroxolyn in addition, when I really swell. The CPAP machine is a fight but keeping it clean and fresh is half of the problem. Sometimes you might need to take a moderate pain pill like Ultram for the discomfort. Not sleeping with air pressure can kill you, usually slowly. It's a tough problem but won't go away if ignored. glf25685646@msn.com


Bill D's April 1 reply to Audrey's March 31, 1999 - Hi Audrey, Welcome to Jon's Place. Be sure to see all the stuff he has hidden under Site Index at the top of this page. It sounds like you've been through the mill! I thought your message was pretty "inspirational" too! Bill. billdog@gate.net


Bill D's April 1 reply to Sara ?'s March 31, 1999 - Hi Sara, Welcome to Jon's Place. His site is much larger than you think. In addition to the messages on the forum, Jon has over 200 pages and links to CHF information. Click on Site Index at the top of this page. Start by reading "The Manual." It explains what you want to know and why your doctors tell you, "You might get a little bit better." We're all happy to meet somebody who's had mild congestive heart failure as long as you have. <g> If you really read a lot of Jon's information, you'll understand CHF a lot better. Bill. billdog@gate.net


Bill D's April 1 reply to Kim ?'s March 31, 1999 - Hi Kim, Welcome to Jon's Place. We're glad to have you aboard our leaky old boat. <g> The more we learn about CHF, the longer we can live with it. The best place to learn is right here. Click on Site Index at the top of this page. You might start your education by reading "The Manual." Some of us print it out for folks who don't understand (like your family). You'll be able to find answers to all of your questions, including what you need to ask your doctors and expect from them. Bill. billdog@gate.net


Robin W's April 2 reply to Brenda H's March 31, 1999 - Hi Brenda, Hopefully everything goes smoothly for you as you titrate up the Coreg. Personally, I had only one brief problem and that was fatigue the first two days after I went to 6.25mg twice a day. After that everything was smooth sailing and I have now been on 25mg twice a day for two years now. As for me, I am anxiously awaiting <lol> my scheduled stay at Club Med, checking in on the 28th. One quick question (I'm kind of embarrassed I don't know this), is April Organ Donor Awareness month? I have tickets for my god-daughter and me to see Rosie O'Donnell on 4/12 (watch and look for me). If it is awareness month, I want to try and contact the coordinators and see if they will mention it or allow me to. I think that seeing a candidate makes the issue real for people and may get them to sign a donor card. Maybe it's possible to have her distribute them to her audience? Is this a realistic thought, yes or no? Let me know what you guys think - send me an e-mail. Robin W, age 31, EF 8%. jwilson@nb.com


Carolann S, April 2, 1999 - Hi Y'all, I was just recently diagnosed with DCM; a week ago today, in fact. For 3 months I was being treated for asthma which was not improving. During a yearly checkup with the internist, I insisted on having some sort of heart test. I was taking Cindy M's advice as she is on another mailing list of mine. Last Thursday I went to the hospital for an echo. As a severly obese woman, the proper window could not be found. The tech immediately called the cardiologist who came and did the echo herself. She explained that I had an enlarged heart which wasn't functioning properly and had me come directly to her office. I was alone and in shock. I called my best friend a thousand miles away, in tears. He gave me the strength to dry up and see what the cardiologist had to say. At the appointment, she explained that I needed a serious lifestyle change. She mentioned that my heart was working at 30%. I had never heard the term EF before, so I don't know if that is what she meant.
     She immediately put me in Coreg, Lanoxin and Lasix. A week later, I feel tremendously better. My shortness of breath has eased tremendously. I am now off the misdiagnosed asthma meds and I am sleeping at night. I continue to do water aerobics 3 times a week. At the end of April I go for a sleep apnea test. The doc believes that lack of oxygen from apnea caused my problem. Two days after that, I return to the cardiologist. I will be prepared to ask more questions. Does anyone have a list of prepared questions for the newly diagnosed? I am thankful that Cindy told me about this site. I am sure additional issues will come up regarding my treatment and I look forward to your input. So, from the sunny south and resident Georgia Peach, I say good night. Carolann. saphirebbw@aol.com


LeeAnn D, April 2, 1999 - Hi everyone, I missed reading The Beat last week! Right before that, I kind of got depressed while my husband was in Holland. He got back but leaves again in the morning. Anyway, I see a therapist who counsels through the heart institute here and thought I'd share some depression zappers.

  1. Get out and take a walk! Exercise and sun helps more than you can believe
  2. Music. Only music that makes you happy or takes you back to a wonderful memory that makes you smile
  3. Hold a baby. That's an easy one for me!
  4. Phone or visit a friend
  5. Help someone else
  6. Think positively. If you have thoughts of having a heart attack, or dying or see your family crying at your funeral, mentally replace them with happy ones like playing on the beach with your kids, laughing with an old friend
  7. Read your Bible, or an inspirational type book

     I know this is all pretty much common sense and you've all heard it before, but here's a little reminder for someone out there who needs it. Take care everyone, LeeAnn in Phoenix. ddavis1057@aol.com


LeeAnn D, April 2, 1999 - Hi all, Bill, I think I remember (yes, I'm too lazy to look it up in The Archives) that you get massages, right? Anyway, my husband gave me a day at the spa for Christmas and it includes an hour long massage. Then one of my friends who gives massages says it releases toxins into your system and maybe it wasn't good for me. I haven't had one since I've been diagnosed. I'd love to get one. What is your experience? I'm also wondering about the body wrap. You probably haven't had one of those, have you? <G> LeeAnn. ddavis1057@aol.com


El R, April 2, 1999 - Hi, I had a first visit yesterday with a new internist here in town who is more than willing to work with my doctors in California. In fact, he didn't even question why. This is a long overdue change. My former internist told me, after the heart biopsy fiasco, that he was the other doctor's (the one who had done it) very close friend. I should have left in 1994 but this new guy was great. He agreed with the meds that I am on from UCLA and said it was aggressive treatment but called for with my EF. He said he would do the same thing. I am feeling much more secure with these decisions.
     I heard from someone, I don't recall the name, who mentioned an LV doctor her husband sees: a Dr. Karen Arcotta. I will have to see who her partners are. Sadly that makes a difference but I have heard very good things about her. Because my husband works in the OR, he knows the people on the heart team and the surgeons and the impressions that they make on the staff. It is a valuble insight for me, knowing how they are when they work. I read a recent post on here about an EF that greatly increased after stopping a med. Can you tell me what that is about? Is it possible to get better? Is it possible to up the function of the heart by doing the right stuff, like exercise and diet? To what extent? I thought my hope was to remain the same. I have never asked many questions about what to expect of my doctors. When I read about the expected span, 5 years after diagnosis, it blows my mind. I'm there, 5 years ast February. I am also at the point where I want to know what to expect. Any input is welcome. El (my first name really is El).


Sara ?, April 2, 1999 - Hello everyone, I hope everyone is doing well. I just want to send blessings to all of you during this Easter and Passover holiday. I am still trying to put all this together. Even though I have read The Manual, I still don't understand a lot of my diagnosis. Oh well, I'll figure it out. I am going to the cardio doc on the 8th and will have a lot of questions for him. Stay well and enjoy the weekend. Lot's of love and prayers to all of you, Sara. sunny33904@aol.com


Sara ?, April 3, 1999 - Hi everyone, Bill D, thanks for your input and info. Has anyone had a blockage in the heart that prevents a part of it from moving (akinetic)? My doctor says I should have a heart cath to see if it is permanently damaged or if I have a blockage that maybe an angioplasty would help. I have heart damage and am allergic to dyes so they have to give me benadryl and steroids. I would appreciate anyone's input. My EF is 25%. I am on aspirin, zestril,and amiodarone. He said he might put me on Coreg later. I am visiting in the south and will be going home as soon as the doctor says it's ok. Thanks and stay well. sunny33904@aol.com


Ben B's April 3 reply to Carolann's April 2, 1999 - Hi, I was just wondering if you are on an ACE inhibitor or ACE 2 inhibitor, a medicine ending in pril, or Vasotec? You mentioned Coreg, Lasix and Lanoxin. I just know that if you are feeling good with these, the ACE inhibitor will really help. It turned me from near death feelings and inability to sleep, to basically okay function for a sick guy. Maybe you just didn't mention it. bdbrinkman@juno.com


Virginia P, April 3, 1999 - Hi, A couple of weeks ago, I had a sinus infection and had to visit my allergist. He questioned me about a drug, "vesnarinone," which he said he had read an article in some medical journal and patients who have CHF and are on this medicine are dying. I have tried to look it up but find nothing on it. I'm just wondering if anyone is taking it. Better check with your doctors or at least be aware of the name to question its use with CHF patients. Apparently the article said they were giving it to patients with CHF. Have a happy Easter. Virginia P. vpauline@stc.net


Jon's April 3 reply to Virginia P's April 3, 1999 - Hi Virginia, I was in the original Vesnarinone trial. It ended a few years ago due to high mortality in those taking the actual drug (I was). Another trial was begun for those patients who benefited from the drug because there was a group of CHF patients who got outstanding benefit from it and they were more than ready to give up a long life for a good but short one. I believe that trial was recently ended but I am sure there will be Vesnarinone given to certain of those patients who are pretty much hopeless without it. It is not a drug that should be given to CHFers in general and the FDA has not approved the drug for general CHF use, so no doctor should be able to prescribe it outside the investigational trial setting. I believe it has ended its trials now, so it may not even be available in that way anymore. Jon.


Bill D's April 3 reply to LeeAnn D's April 2, 1999 - Hi LeeAnn, I'm not the guy who told you I got massages! Not only that, I wouldn't get within a hundred yards of a body wrap! You're the one who's supposed to exercise, not some masseur who's in great shape to start with. Tell your husband to buy you a treadmill. Bill. billdog@gate.net


Bill D's April 3 reply to El R's April 2, 1999 - Hi El, You are coming up with scraps of information that will only confuse you. You need to know all about CHF and the place to do it is here. Click on Site Index at the top of this page and start educating yourself about what you have! The forum is mostly for support. Site Index has the real information. Regarding "someone," you have to go back in The Archives and see who, then write to them. We have people from all over who read the forums. Only one in a thousand can use information about a single place. <g> Bill. billdog@gate.net


Bill D's April 3 reply to Carolann's April 2, 1999 - Hi Carolann, Welcome to Jon's Place. We're glad to have you aboard our leaky old boat. The more we learn about CHF, the longer we can live with it. The best place to learn is right here. Click on Site Index at the top of this page. You might start your education by reading "The Manual." Some of us print it out for folks who don't understand. You'll be able to find answers to all of your questions including what you need to ask your doctors. Bill. billdog@gate.net


Linda L, April 3, 1999 - Hi Jon, hi all, I have been gone for quite awhile. I had to come by and say hi. Hi! Well, last time I talked to my cardiologist was about 3 months ago. He said that my heart is doing better. Actually, after this year long of resting and not stressing my heart, it has actually opened up a bit and the valve that was to be replaced is now on the edge of critical. Yea, means no surgery for a while. I am going back to college and I have become so interested in geneology that I do not have the time to think about the situation I am in. I take full advantage of the disability parking and stuff like that. I cannot climb stairs but I can go down them ok. I am just so grateful to the powers that be that I can at least breathe. I am taking good care of me and making my time count. I just wanted to share this with you, my good friends. I know how quickly this could turn around, so I do not take it for granted. Take care, all. Linda L. owina2@pdrpip.com


Lynn D's April 3 reply to LeeAnn D's April 2, 1999 - Hi LeeAnn, I get a massage every 2 weeks and have been doing this for 2 years. My massage therapist requested a written permission from my doctor. Blood clots are the main concern. It makes all the difference in the world for my flexiblity, pain control, circulation, and keeps me feeling happy along with better sleep the day I go and a few days afterward. I think it is a terrific way to keep healthy. In my opinion, it should be covered under health insurance like our doctor visits instead of sometimes being covered a small amount under wellness care. lynndaniel@mindspring.com


Anne M, April 3, 1999 - Hi, I have been following the posts since I found this site in January. I have learned a lot. I noticed some comments about clonidine and would like to relate my recent experiences. In January, I began the Moxcon trial that was trying out moxonidine. I did very well with the drug. We even went for a Caribbean cruise, which necessitated a long flight from Totonto to Fort Lauderdale and I coped. I was actually feeling like a normal person, even though I had to lie down with the CPAP every afternoon. Shortly after we got back, I was hit with the news that the trial was being stopped. As soon as my dosage was lowered, I had severe tachycardia, felt extemely nauseous, and very ill. I was put into ICU in the hospital to be monitored and to try clonidine. The clonidine effectively slowed down the heart, but I have developed an allergic reaction to it with itchiness on the palms of my hands and soles of my feet and anywhere else that chances to get warm. Now I am taking prednisone to counteract the reaction. There is something wrong with this picture.
     Apparently moxonidine has been used in Europe and South America for the last 4 years for hypertension, so it is available on compassionate grounds. While in the hospital, an echo was done and my EF has gone from 10% to 25%. The chambers of my heart have shrunk and my mitral valve is now working more effectively. Good news! I see the cardiologist again on Wednesday so I hope we can get the moxonidine organized again. I cannot take beta-blockers because I have diagnosed asthma and apparently even if I took a small dose of beta-blocker, I would be in terrible trouble. The moxonidine was a great solution. My understanding is that the drug company, Ely Lilley, didn't want to proceed since the market for the drug was small and it would be too expensive to market. Has anyone out there got any information or experience with this? I would sure appreciate any feedback. Until then, I am trying not to scratch in Toronto! Anne. cmeda@istar.ca


Kim S' April 3 reply to LeeAnn D's April 2, 1999 - Hi everyone, LeeAnn, I loved your depression zappers! I'm tired of these cold weather blues and looking forward to spring. About Coreg, I thought I'd share my experience. I noticed a huge difference in my energy level when I began Coreg but with each dose increase, I could count on being in bed for 3-4 days. I finally made it to 25mg twice a day and it was the worst 6 weeks I've had lately. I had headaches, head rushes, dizziness, fatigue and nausea. It would last for a few hours after taking my medication. I just couldn't tolerate this much longer so my cardiologists cut me back to 12.5mg twice a day. He said I'm still benefiting from Coreg and the side effects disappeared! I think Coreg is a great CHF drug but it definitely takes awhile to see what your body is comfortable with. lalakimmie@aol.com


Claire F's April 3 reply to Gwendolyn's March 31, 1999 - Hi, I have inherited dilated cardiomyopathy with compensated CHF. Many of my DCM symptoms are intermittantly present. After a past EF of 25, 6 years after diagnosis, my EF is now 55. However, no matter how happy my heart is, I have upper GI problems. The GI problems are the least problematic if I get 10 hours or more sleep per night and exercise regularly. After 3 years of cardiac rehab, I joined the local YMCA. Under both programs, I had supervised aerobic activities and weightlifting and Nautilus use. My GI problems involve esophogeal and upper stomach motility or lack thereof. The food doesn't always go the right direction. I have no problems if I do not eat. We tried everything. Eventually, we found cisapride helped. However, it takes ½ hour to kick in so you have to remember to take it. It is also fairly new and no long term effects are known. One thing I noticed is that Mexican meals were less of a problem so I experimented with hot peppers. I have found that capsicum helps if the problem is not severe. My family and some doctors think I am nuts. What I have found is that if I take a sip of vinegar that has had hot peppers sitting in it, my esophagus and stomach motility kick in momentarily. It works within 5 minutes and the effect is about 10 minutes in duration. I actually carry around a small 15ml dropper bottle and squirt one to put drops on my tongue as needed.


Jay Q, April 3, 1999 - Hi y'all, Since getting a "little" DCM (like getting a "little" pregnant) my heart is my hobby. Recently I picked up a heart monitor with wrist readout. The treadmill I use also has a readout but is giving weird results for the same sender, on my chest. For example, rates of 150-160 when my wrist readout and hand-taken pulse give 108. Other machines in the cardio room behave simularly so this does not seem to be a machine problem. Has anyone had similar experiences? If so, or not, I am interested in exchanging info. I will be tormenting my internist and cardiologist with this and other questions soon. I hope the answer isn't just "Duh." Cheers. Jay Q. affinis@aol.com


John ?, April 3, 1999 - Hi, After 3 months of colds and flu, I was informed that I have remnants of pneumonia and now CHF. I spent yesterday in the emergency room, and was sent home with Lasix and potassium. I still feel terrible, have no energy and am constantly out of breath. Any suggestions? Wilding1@aol.com


Bill D, April 3, 1999 - Hi all, My good friend Jerry Ellis convinced me that he should come up and upgrade my computer and upgrade he did! He put in all kinds of stuff. Just the Norton Utilities Integrator takes 15 minutes to load! <g> Every second my clock gets corrected by an atomic clock in Colorado somewhere. Every other second a little voice says: "Uh Oh!" and an ICQ message is blinking, wanting to be read and interrupt whatever I was thinking about. Every time I get an e-mail there's a knock-knock, which I thought was Rosie. It's taken me hours just to find out how to send e-mail on my MS Outlook.
     On the downside, during the transfer, all your addresses were lost along with all my Sent mails and my Deleted mails. That means if I forgot what you are talking about, I don't have any place to look. On top of that, my Mayo Clinic Pharmacist, my Compton's Atlas and Encyclopedia, and my Internet Phone programs won't work on Win98. I'll miss the Mayo Pharmacist program most because they didn't come out with a version for Win98. It allowed me to check meds, side effects and contraindicated meds for you. billdog@gate.net


Brenda H, April 3, 1999 - Hi, For anyone who has experienced depression with Coreg, please tell me it will go away! This is my sixth day and it started this morning. My husband seems like the most insensitive guy on the planet! I feel all alone, please tell me it will go away. Thanks for your support, trying to hang in there. Brenda H. Hansonfoxi@aol.com


Ruthie A's April 4 reply to Bill D's April 3, 1999 - Hi Bill, I grieve with you about your program losses, especially the Mayo Pharmacist program. It was because of what you said that I found out about clonidine and beta-blockers. It was because of what you said that I made the effort to apply to and get accepted into the Heart Failure Program at Vanderbilt. It was because of what you said from that program that I feel so much better now. Even my family and friends are commenting on the difference since I came off the clonidine. So I am sad but the good that has been done by your accessing that little reference tool is immeasurable and for that, you can be grateful. I know I am. Ruthie. rlaba@mindspring.com


Jim H's April 4 reply to Pete E's March 22, 1999 - Hi Pete, Thanks for the info on survival rates. You confirmed what I was thinking when you said that all CHFers were included in the stats. I know that DCM is generally associated with aging, so it only makes sense that the mortality rate could be quite high. As I said, I have no symptoms of DCM so I am a little hesitant to post here because I feel guilty about posting on a site where so many people have serious problems that I don't have. The only problem I had was adjusting to Coreg. I thought that stuff was gonna get me before the DCM did. <lol> I finally did adjust to it and I guess it is helping but like I said, I didn't feel bad before I started taking it. Have you heard about immune globulin treatment? It is being done in Pittsburgh and from what I can find out, it is supposed to work really well. I asked my doc about it and he said it was too early to tell if it would work or not but if it didn't work, then a person would have all the anti-bodies of everyone you got the blood from, and the likelihood of rejection from a transplant would be much higher because there would be several different peoples immune systems trying to reject the new heart. Oh well, it was just something that sounded promising and interesting. Well, once again, thanks for the info and remember to keep the faith because some day DCM will be thing of the past. Jim H. EF 32% and holding (I hope). JHall58317@aol.com
 
Jon's Note: See Heartbytes


Leland's April 4 reply to Brenda H's April 3, 1999 - Hi Brenda, I'm sorry to hear that Coreg does not agree with you. There are many documented cases of beta-blockers such as Coreg causing these general symptoms: dizziness, fatigue, lethargy, depression, headache and nightmares. Some of these symptoms will lessen over time. Can you hang in there for a month's trial? See Kim S' April 3 reply to LeeAnn D's April 2, 1999. Llyee@prodigy.net


Luc D, April 4, 1999 - Dear friends, I want to wish you all a very Happy Easter! Sincerely, your Belgian friend, Luc. Luc.Deseins@ping.be


Sara ?'s April 4 reply to John ?'s April 3, 1999 - Hi John, Don't walk, run to the nearest cardiologist. You need further tests, like an echo or stress test to begin with, to determine exactly what is going on and if it is CHF, you will need more then just Lasix. Stay on this wonderful site and you will get a lot more information and help from our friends, who know more as they have dealt with this disease longer. Good luck, Sara. sunny33904@aol.com


Debbie R's April 4 reply to Brenda H's April 3, 1999 - Hi, Your husband isn't the most insensitive man on earth, my ex won that prize. In answer to your question, you will come out of the depression. I just had my Coreg upped a couple of weeks ago and have just come out of the depression. There is light at the end of the tunnel! After reading the letters posted here, I'm just realizing this is what has been wrong with me. I thought maybe I was getting sick again or was in a horrible depression. I did have a friend die during this time but she had cancer and I was glad she was out of pain. I just had no energy and was barely able to function and do my everyday stuff. You know, like getting out of bed, let alone getting ready for work. It'll get better! Debbie R. Debbiedo@aol.com


Will W, April 4, 1999 - Hi everyone, I would like to wish everyone a Happy Easter and may each one have a better year so that I may wish you all a Happy Easter next year. God bless and look over you.


Ben B's April 4 reply to Jay Q's April 3, 1999 - Hi, Do you have any irregular beats such as PVCs? Various methods of measurement have different sensitivity and accuracy as far as measuring irregular beats, depending on the transducers and integrated circuitry used. Some devices have signal averagers to detect all the beats. I have a lot of PVCs and some runs of bigeminy (one PVC followed by a regular beat). When I measured by hand, at the wrist or on my finger on my home treadmill, it didn't seem like I could get my pulse above 80 no matter what I did. I thought I must be a marathoner. Then I went on the fancy treadmill at my doctor's and he said my heart rate went up to 160 really quick, which is more like it for a guy like me. klbrinkman@msn.com


Julie Kendall, April 4, 1999 - Hi, I have a quick question. I read in the CHF description that a normal EF is 55 or above. My EF has risen over the last 2 years from around 30 to 56 the last time it was checked. The problem is, I feel exactly the same. Does that mean medically I no longer have CHF? Am I cured? Why, if a normal heart function is 55 or above, am I still dependent on Lasix to not swell up? Thanks, love, Julie.
PS. If anyone out there lives near Portland Oregon, I could really use a friend, a face to face friend dealing with this condition, too. Jon posted my bio, I'm new! jkendall@gorge.net


Jon's April 4 reply to Julie Kendall's April 4, 1999 - Hi Julie, Welcome to Jon's Place! Your question is the toughest one I ever try to answer. I am nearly in the same boat. My EF has gone from 13 to 45% in the past 4 1/2 years.
     There are many ways to measure "function." I'll tackle heart function, the way our bodies function overall - utilizing the oxygen it gets from freshly pumped blood, and functional class.
     Many measurements can be used, like pulmonary wedge pressure, cardiac output, and cardiac index, but I am going to focus on the ones most of us already understand, okay? Heart function is generally measured by EF. The closer we get to 55% or higher EF, the closer our heart function is to normal. That doesn't mean we can live a normal life or that we feel normal, just that our heart pumps a normal amount of blood per beat. This is a problem that has only arisen for most people since Coreg was approved for CHF. Coreg raises our EFs but does not always raise our ability to function normally in our everyday life. Medical science is far from perfect and as far as I can tell, they just don't know why yet. This is being seen more and more and is now becoming accepted as just the way it is for a lot of us. Let's hope SSD feels the same way!
     The way our bodies utilize oxygen can be measured with a Vo2max test. As discussed earlier, below 14 on this one means we are approaching need for transplant. With an EF of 45%, my Vo2max is only 13.5. Go figure! A normally functioning heart doesn't mean a normally functioning body. This may be for many reasons. Keep in mind that if you never exercise, your Vo2max reading will be artificially low because your poor old body is just not able to use oxygen well due to being in lousy condition overall!
     Functional Heart Class is defined in The Manual. This measures your actual ability to do day to day tasks and to physically cope with the demands of the day. You could have an EF of 55% with a functional class of 2 or 3. It does happen.
     Are you cured? Please read the first section of The Manual very carefully. You have an underlying condition or cause of your CHF. If that underlying cause or condition is "cured," then it depends on whether you suffered any damage while in CHF. A poor blood supply to other organs caused by CHF can damage them or the heart may have been scarred. If enlarged for too long, you may have developed arrhythmia - lots of things to consider. If your heart was damaged during a viral attack, you may never be cured - the damage might already have been done and going off meds would bring back CHF - or not. Same for a major heart attack. If you had coronary artery disease and a bypass or angioplasty cured that condition, you may be cured for good, or not, if your arteries close up again. If chronic high BP brought on CHF, damage may have been done to different body systems. You may never suffer CHF again but you may need medications for the rest of your life to sustain that normal heart function. If you stop taking them, you might go back into CHF. Does that make you cured? It depends on your definitions. <g>
     Then again, you may have actually been cured and you may just need to exercise and eat right until your body regains tone and strength. This is why we have CHF specialists! You should really sit your doctor down face to face and have him answer your questions at length until you really understand your own personal situation. My CHF doctor never has used the word"cured" to me. He prefers to say that I am "well compensated," meaning that my CHF (symptoms) is under excellent control for now.
     Please keep in mind that I am not a doctor and I simplify everything even more than my own meager understanding to reach the most people. Am I cured? I believe this is a question that can only be answered by a specialist who knows all the facts about you. Still, we can get a general understanding of our illness to help us understand what he tells us about ourselves. Jon.


Della R's April 4 reply to John ?'s April 3, 1999 - Hi John, I have posted here a couple of times. This site is really great and my heart goes out to everyone with all the various conditions and intolerances to meds. I recognized that your recent problems sounded a whole lot like my most recent bout with CHF. The day after Christmas I was down and out with flu and pneumonia (with ear infection, acute sinusitus and conjunctivitis, and ensuing espisodes of hypoglycemia). I was treated with antibiotics twice and still didn't get over it. On March 1, I wound up in the ER and was admitted. I was treated with Lasix to get rid of the fluid and had respiratory therapy. The next day, they shipped me off to St. Francis in Peoria by ambulance, where treatment continued and my cardiologist did an angiogram. No intervention was required this time. My arteries were much better than in 1997 when they were in there.
     When I left the hospital, I still had some fluid in my lungs and my kidneys weren't functioning as well as they should have. I was in the hospital 4 days. Anyhow, just last week I finally began to notice a marked improvement. Even the nagging cough I was blaming on my Vasotec has all but disappeared. My sinuses still drain some but, hey, I feel so much better! There were so many bugs around this year and most folks took "forever" to get to feeling better. I encourage you to stay in close contact with your health providers and hang in there. Try to keep a good positive attitude. You'll be in my prayers. God bless you. dellerdo@inw.net


Marion Godzik, April 4, 1999 - Hello everyone, I just found this site today. Where have I been the past 2 years?! I'm a fellow CHF patient, due to DCM. I've been diagnosed for 2 years and still can't believe it. I'd like to ask one question of all of you. My EF on diagnosis was 20%. I went to cardiac rehab and am on many meds, as are all of you. My last echo showed that my EF was 40 to 45%. I still on a daily basis get that short of breath, can't get enough air feeling. I also had an incident 3 weeks ago when I was out shopping with my mother where I got to a point where I couldn't breathe well, and was so tired I literally couldn't move another step. It scared me. Has that ever happened to any of you? I finally called my cardiologist. He said that I should give him a call on Tuesday if I don't feel better and he'll do another echo. I really hate to have those "off days." Thanks for any info you can send me. Feel free to write me at my e-mail address. Thanks. mgodzik@aol.com


Bill D's April 4 reply to Ruthie A's April 4, 1999 - Hi Ruthie, C'mon, I didn't do all that! I was so proud of what you said, I had Rosie come in and read it! All is not lost! Rosie still has Win95 on her computer and son Willie will install Mayo Clinic Pharmacist CD there come Thursday. Then all I have to do is copy down the meds and walk over to Rosie's computer, persuade her to save her Backgammon, and look them up. <g> Many of the meds are listed at the Mayo Clinic Oasis site. Be sure to check the Pharmacopia before you punch the Search button. Proud Willie! billdog@gate.net


Bill D's April 4 reply to Jay Q's April 3, 1999 - Hi Jay, I take Coreg and I don't think my heart rate would go over 80 if I was falling off the Empire State Building. <g> Seriously though, when I used the HR gadget furnished by the rehab people, sometimes it would go crazy. It's the kind that you wet and strap around your chest. It transmits your pulse to a wrist watch thing. The nurses said if I got too near someome wearing another one, they'd fool each other and add up both of our beats. Bill. billdog@gate.net


Ginger's April 5 reply to Ben's March 14, 1999 - Hiya Ben, Aren't PVCs just about as annoying as they can be? I have them. I have had them all along. They caused me problems for a while. I got told to stop exercising for a while, had 699 of them in a 24 hour period on a Holtor monitor test. Then they got bad enough that I ended up having to go for a EP study which turned out ok except they couldn't do anything because they are multi-focal. So now, I have pills for anxiety on days when they get to me. I can go days and not have one and then have days where I have them all day long. I hate them. Don't laugh but when I get heartburn or get too full, I get them worse. Go figure. To all those at chat last night, my server went down and stayed down. Jon is working on fixing our chat room problems also. So you people that have tried to get into the chat room and can't, hang in there and try again. It will get resolved. Stay well ya'll, and I hope everyone had a good Easter. Hugs, Ginger. mystery@laker.net


Lee R's April 5 reply to Julie Kendall's April 4, 1999 - Hi Julie, I had the same questions you did about EF going up and actually I don't feel as well at 40% as I did at 29%, althought that is not a big difference. Jon's answer was very thorough and helped me understand what my cardiologist has been saying all along, it's not the numbers that matter, it is how you feel. I do feel better when I'm exercising. I don't live in Portland, Oregon - would you believe New Jersey? I hope you find someone out there. Cardiac rehab might be a good place, if you are eligible. Stay in touch. Bestest, Lee. LeeRoush@aol.com


Lee R's April 5 reply to Marion Godzik's April 4, 1999 - Hi Marion, I am so happy you found Jon's Place - it is the place to be. I have had DCM (no known cause) for about 2 years, and my EF has gone up but I still have days where I just do what is absolutely necessary and I curl up with a book. That usually happens when I overextend myself the day before. Take a look at The Manual for CHFers. It's listed in the Site Index and there's tons of other stuff there too. It will help you understand about those off days. Are you still exercising? I loved cardiac rehab. I hope you are feeling better today. Please let us know and feel free to write me at my e-mail. Bestest, Lee. LeeRoush@aol.com


Duane, April 5, 1999 - Hi, I went to Mayo this past December and they found my EF was up to 45-50%, with a mildly dilated left ventricle. They couldn't believe it. My EF was 16% in October of 1997 so they asked for the films. I sent them the films and they said the 16% was right and they don't know why it is better. I know from the forum that a lot people get better numbers but still don't feel better and that is me. The best part is that with new numbers, I have talked my back surgeon into working on my lower back; I have almost non-existent disks. I go in tomorrow for a fusion from L2 to s1. I am hoping this relieves the pain, The back pain has been harder on me than the heart. I don't post much but read often. Thanks a lot Jon, for keeping this going. Duane. djclink@kdsi.net


Lynn D, April 5, 1999 - Hi everyone, My EF went up a bit like Jon described. The Coreg creates this increase in EF but I don't really see much difference in my symptoms. I need some help with the definition of Chiari net in the right atrium. I can't find a site to describe what it is. Thanks. Bill D, if your dictionary is up, I'd appreciate the help. lynndaniel@mindspring.com


Terry T, April 5, 1999 - Hi everyone, I just want to throw a little different seasoning in the stew. I am a 52 year old male who has had DCM-CHF for close to 7 years. Two years ago, I started on Coreg, with the usual ramp-up in dosage to 25mg twice daily. I noticed no negative difference in the way I felt at any time since I have been taking it. My cardiologist's nurse would call after every increase and ask how I was feeling and he couldn't believe I could tell no difference at all. The major benefit I have gained is the large reduction in episodes of angina and PVCs. I used to get chest pain so badly after eating, I would eat 6-7 times a day to reduce the stress on my heart. Now, I rarely have a problem unless I over-exert myself (mostly upper body). However, I started on CoQ10 a few months after the Coreg, so I'm not really sure which (or both) of them is responsible for these pleasant developments. I go in for an echo in a couple of months for the first time in 2 years, so I'll let you know if my EF and leaking valves have improved, which I feel certain they have. terturn@aol.com


Amy G, April 5, 1999 - Hi, I am 26 years old and was diagnosed with CHF (post-partum cardiomyopathy) in September of 1994. I stumbled on this site today. I am on 40mg Accupril, 0.25mg Digoxin, 75mg Lopressor twice a day and 40mg Lasix. I am looking to talk to people that have CHF and understand how I feel. I would like to learn as much about this condition as possible. Please e-mail me with any information or if you just want to talk. Amy G. NPGBear@aol.com


Jim H, April 5, 1999 - Hi everyone, This is my first time to post. I have CHF but don't have the information of my condition as the folks do at this site. I sure have some questions for my doctors now. Thanks to Jon and all the good people who post here. I read the posts every day and have a world of information as a result. I hope I am doing this right. I am just starting to use the computer. If someone wants to e-mail me, please do. Have a good evening and God bless. Jim Ha. Bubba2ha@aol.com


Bruce S, April 6, 1999 - Hi everyone, I just wanted to say a quick hello. I check all the posts everyday. I hope all you people starting Coreg will give it time to work. I really felt bad from 25mg a day for about 4 months. Hey, does anyone else like to garden? It really does make you feel better. If anyone does, e-mail me and we'll talk plants. God bless all! baspencer@rtelco.net


Tony P, April 6, 1999 - Hi everyone, I appreciate your help about my Vo2 numbers. I would like to ask Jon about a trial that I found out about on the Web. It is awaiting approval to be tested on humans after a good success on pigs and mice. It is gene therapy where they inject an enzyme AC6 though a catheter. The company, Collateral Therapeutics in San Diego, says that AC6 makes the heart strong again. Please tell me how I go about getting in this trial. Thank you and I wanna wish all you good people on the site a happy and healthy Easter. Thank you, Tony P.


Jon's April 6 reply to Tony P's April 6, 1999 - Hi Tony, Collateral Therapeutics has a number of products in the pipeline right now. I think you mean the one at www.collateralthx.com/site/tacorgen.html. If so, you can write the company at info@collateralthx.com . Ask them for info on trials and locations that may be participating. Jon.


Christine, April 6, 1999 - Hi, I am glad to be writing to you all since I have just gotten back online and have been reading your messages, which is very helpful and a blessing to those of us who are new kids on the block. I had my heart attack on 12/30/98 and was in the hospital for 5 days. I have been an insulin dependant diabetic for 21 years, so I guess that played a big part in my heart problems. I have no other diabetic related problems, as I am very careful with my diet and for the last 5 years have become vegetarian, although not 100%, since I love my fish. Other than that I have also done away with almost all fats. I still have a time trying to control my blood sugars and cannot understand what else to do. I am now considering going to see an island doctor who says he has taken diabetics off insulin, especially with his well acclaimed Waiane Diet for Hawaiians (I am not Hawaiian) but would like to look into his diet and exercise program. Other than that, have any of you been able to get good control? Please let me know.
     Since my heart attack, I have been put on Mevacor and Cozaar with a baby aspirin a day. I have to undergo the stress test on April 13 but for some reason could not go through with my prior appointments since I had what seemed like an anxiety attack. I could not lie down for the 20 minutes under the scan. Has anyone experienced this? I have never been like this before and am very embarassed with this kind of thing that I went through. I would also like to hear if you have, and what you did when this happened?
     My doctor plans to put me on Coreg, the smallest dose, after I get the stress test done. I hope and pray all goes fine. I was recently speaking with a friend who gave me a book called Left for Dead by Dick Quinn. He recommends Cayenne pepper capsules, a special blend that is sold at a store with Hawthorn and garlic, supposed to help circulation, the heart and other related problems. He also recommends lecithin, especially soy lecithin granules, which he says is an artery flush if taken at 3 tablespoons a day for 12 days. Has anyone taken these and what has been the result? Dick Quinn swears by these products although he has passed away since but his family is reaserching these herbs. I plan trying them out in the near future but would like to hear from you all.
     Thank you reading this long e-mail and take care of yourselves. Thank God that you live each day because it is a wonderful experience. I am 48 years old and have 3 beautiful kids and a very supporting husband, so I want to make the most I can with them. That is half the battle won, so to speak. Until I hear from some of you, aloha from sunny Hawaii. Chrisd1950@aol.com


Don T, April 6, 1999 - Hi Everyone, This is my first post since finding this site a month ago. I have read all of the posts and am very thankful for the info I have received. I am a 66 year old male who was diagnosed with CHF in August of 1998. This diagnosis was as a result of the test for a skipping heart beat. My EF at the time was 40. My doctor has prescribed a number of meds, which includes Coreg (12.5mg twice a day), Lanoxin, Isodril and Avapro. Because of feeling so tired a lot of the time, he recommended a number of vitamins like anti-ox formula and colloidal minerals. These have helped a lot. I am not tired like I was earlier. Lately I have noticed an increase in shortness of breath. I don't know what that is about but I see my doctor on the 7th. Thanks for all the input. Don T. ca65@aol.com


Lee R's April 6 reply to Amy G's April 5, 1999 - Hi Amy, and welcome! There are others here who have been diagnosed with PPC and I'm sure they'll be in touch. In the meantime, you could check out the bios at Who's Who here at The Beat. Just look at the Site Index and you will find enough info to keep you going for quite awhile - I'm still getting caught up! Jon and the others here do a great job! Bestest, Lee. LeeRoush@aol.com


Lee R's April 6 reply to Jim H's April 5, 1999 - Hi Jim, as Bill would say, welcome to our leaky boat! I'm glad you wrote to us and that the forum here really helped. I think we all feel the same way. Stay in touch with us, Jim, and you might think about adding your bio to the Who's Who page and there are also chat times (see the Site Index). Take good care and write often. Lee. LeeRoush@aol.com


Linda O's April 6 reply to Duane's April 5, 1999 - Hi, I hope your back improves and you are out of pain, Duane. I will sure be thinking of you and will certainly keep you in my prayers. I guess the magic word for back patients is patience. Be sure and do exactly as your doctor asks. I have been having quite a time with kidney infections and wondered if Q10 would have any effects on this? I sure hope not since I feel it has certainly been beneficial. Linda O. norvalo@clarindda.heartland.net


Kelinda Spears, April 6, 1999 - Hi all, Sunny, I sent you an e-mail but perhaps it might not get to you as I didn't scroll down and read this before I sent it to you. I just clicked on to your e-mail address of sunny33904@aol.com. I am wondering why no one has considered putting you on the North American Transplant List, when it is obvious you are not improving? I have suffered like that, with an EF of 15%, night sweats, heart racing at over 190 beats a minute, and trying to look after a 3 month old son. It is not a good quality of life at all! Send me an e-mail. Kelly-Ann.Speers@exhange.pwgsc.gc.ca


Kelinda Spears, April 6, 1999 - Hello all, Amy, My name is Kelly and I was diagnosed with PostPartum Cardiomyopathy on March 24, 1994. I have sent you an e-mail. I hope you receive it. Scary stuff, this CHF, huh? How long after your child was born, were you diagnosed? My son was 3 months old and I suddenly couldn't breathe, I had chest pain, my left arm was numb and it felt like someone was stabbing me right between my ribs. I couldn't breathe without it hurting. Wow! The cardiologist I saw sent me home with aspirin, patted me on the head, and told me it was all in my head and that I had been suffering from postpartum depression, was all it was. I almost died because of him. Send me an e-mail if you can. Kelly-Ann.Speers@exchange.pwgsc.gc.ca


Valerie D, April 6, 1999 - Hi, I have also had congestive heart failure twice. I have never heard of Coreg. Please tell me something about it. I am on aspirin, cardizam, K-Dur, Lasix, toprol, Lipitor, niaspan, vitamins, Vasotec, Prilosec and a few others. I could really use some information about Coreg. I have had 2 bypasses and numerous caths and ballons and stents. To the person who wanted to know of a doctor near Silver Spring, there is Dr. Satler at the Washington Hospital Center. My main cardiologist is Dr. William McLaughlin in Winchester. He is tops but Dr. Satler did my procedures the last 2 times in D.C. and I believe I will need to go again when things start to close again.
 
Jon's Note: See this page


Pete E's April 6 reply to Julie K's April 4, 1999 - Hi Julie, I share your pain, to coin a phrase, about not feeling as well as before. When my EF was 10 or so, I seemed to be able to do more and have more energy then I do now. Awhile back, there was a discussion of this topic here and most patients seemed to have a letdown in energy after a few years. Hang in there, things are not as bad as they seem. Pete E, EF 25. Peiden@skypoint.com


Pete E, April 6, 1999 - Hi everyone, I would like to invite all readers of Jon's Place to the new Healthy Heart Market on-line store. You can find many low sodium and sodium-free food products at www.healthyheartmarket.com/. I would love feedback about what all of you think about the store. Also, I am starting to carry some supplements. I would appreciate it if you could let me know of any supplements that you may use that I do not carry, and if my prices are competitive. I have shopped the Net, and I think the prices for the supplements are some of the best around. I appreciate any feedback I can get. Thanks, Pete E, EF 25. Peiden@skypoint.com


Gail B, April 7, 1999 - Hi everyone, This is my first time posting and I would like to start by saying that this is a fantastic site. The posts and links are very informative and helpful. I am a 44 year old, non-drinking ex-smoker and was diagnosed February 1 of this year with CHF. I had been treated the last week in December of 1998 for walking pneumonia. I was experiencing spells where it felt as though my bronchial tubes were closing off and I couldn't get any air in my lungs. This would last a few minutes and then I would be fine. After about 3 weeks, this stopped. Shortly thereafter, I started becoming short of breath. I could not make it up a flight of stairs or complete a sentence without gasping for air. I went back to my family doctor and he did an EKG. He immediately sent me to the emergency room, thinking that I may have had a heart attack. It was determined that I had not had a heart attack and after an echocardiogram, I was diagnosed with CHF.
     The doctor said my heart was slightly enlarged and was pumping at about 30%, with 60% being normal. Other than shortness of breath, a blood pressure of 160/110 and excessive sweating, I had no other symptoms. My oxygen level was good and I had no pain of any kind. I was started on medication - Digoxin, Monopril, K-Dur, Coreg and Lasix - and spent 4 days in the hospital. There seemed to be no side effects from the meds and my breathing began to return to normal. I returned to work the following Monday. On Wednesday, I began suffering from a very intense burning sensation that seemed to start about an hour after taking my nightly Coreg and K-Dur. The best way to describe it is as hot lava flowing from my stomach all the way through my intestines. Nothing relieved it. Over a period of days, these spells became longer until they were almost constant. Thinking it was either Coreg or K-Dur, I called my cardiologist. He said that it couldn't be the meds and to see my family doctor to find out what it was.
     My family doctor put me on Axid twice a day. This gave me no relief so he put me on Prevacid twice a day. Prevacid relieved it somewhat but not very much. I returned to him and told him that I couldn't go on like this. I had not eaten in almost 3 weeks and could barely drink water. I lost 20 pounds in that time. He sent me to the emergency room, where eventually I was diagnosed with pancreatitus. I was put on hydrocodone and kept on the Prevacid. They also gave me an IV of something because my blood pressure was 210/120. After 12 hours, I was finally allowed to go home. The following week, I returned to my family doctor for follow-up and he took me off the K-Dur, thinking it may have been the culprit. The intense burning stopped almost immediately but recovery from the pancreatitus took about 3 weeks. I have lost 35lbs since this began. My blood pressure is still averaging 160/110 and last time I went to the cardiologist, who still has trouble believing K-Dur was the problem, my blood pressure was 200/110. He added Norvasc to my daily drugs but there doesn't seem to be any change yet. This is frustrating to me and my doctors. My family doctor went back through 3 years of records and could find no history of high blood pressure.
     Today, I feel fine, with no symptoms of CHF at all. I have resumed all previous activity with no problems. The doctors feel that a virus may have caused the CHF but if my blood pressure doesn't come down, it may cause permanant damage. Has anyone else had this problem? My cardiologist said that he doesn't usually see blood pressure this out of control until someone has had CHF for years. I am looking forward to hearing if anyone else has had this problem. b08548@frontiernet.net


Susan P, April 7, 1999 - Hi Friends, I haven't posted for a very long time, but I'm still here and reading the posts on a fairly regular basis. My heart got a lot better for about 10 months last year. I got a new job (computer programmer/systems analyst with excellent insurance, so my e-mail address has changed, and I was doing quite well until about a month ago. It's a-fib again and this time the dox cannot get me back in rhythm. They zapped me 3 times 3/25/99 and now I'm planning on a new mitral valve in May. The doctor said I could try another med called amiodarone but after reading about it on the Net, I decided I would rather have a valve job. Amiodarone has a high occurance of really nasty side effects! Anyway, I'm still dancing, gardening, working and. On 4/16, I will have the cath to find out how soon my new mitral valve will get installed. Bless your hearts, Susan P. spower@apsllc.com


Ella R, April 7, 1999 - Hi, I didn't know such a place existed, great! I was looking for information on left branch bundle block which a doctor diagnosed 3 years ago. He said not to worry then but my arrhythmia is much more frequent and debilitating now. Can anyone tell me about it or where I can get more information about LBBB? I know it is not good to do but I took a minute dose of someone's Lanoxin when I felt terrible on vacation and it was amazing how soon I felt better. I did it several days when arrhythmia was bad, and it helped each time. I know I must see a doctor but just wish I had more knowledge before going. Thanks so much.


Candy, April 7, 1999 - Hi, I have a general question that someone may be able to answer. My rebab doctor stated I may have a benign tumor in my back that may require surgery. I know when I was first diagnosed with CHF he was very reluctant to consider it. Has anybody here had surgery after having CHF and cardiomyopathy? If yes, was the recovery time more difficult or were there any problems after? My rehab specialist is very good at explaining things but he doesn't really know the answer. He just works on my back, muscles and joints. I'd appreciate if anyone could answer my questions. GrPota@aol.com


Bill D's April 7 reply to Don T's April 6, 1999 - Hi Don, Welcome to Jon's Place! In addition to the forums, Jon has collected over 200 pages and links to information you should know about CHF. On the top of this page, click on Site Index. You'll find information about shortness of breath, what causes it and what you can do about it, CHF medications, medical procedures, tests and the reason they do them, what diet and exercise programs should be, information on the newest experimental drugs and procedures and how we try to cope with CHF. From your post, it would seem that you are not seeing a cardiologist. Cardiologists, preferably specializing in CHF, are the ones to see! Don't stay with your Primary Care Physician. That's my 2¢! Bill. billdog@gate.net


Bill D's April 7 reply to Valerie D's April 6, 1999 - Hi Valerie, Welcome to Jon's Place. This is the best place to answer all the questions that your doctors don't have time to answer. Go to the top of this page an click on the words: Site Index. You should start by reading "The Manual." Then start burrowing in to all the information Jon has collected on CHF, the diseases that cause it, what you can do about it, how to evaluate your doctor, how long you'll probably live and interesting things like that! Here's my opinion, as a CHFer, on angioplasties and bypasses: These operations and procedures amount to a five billion dollar business for cardiologists and surgeons. I have had a 5 way bypass, innumerable balloon angioplasties, some with stents and some without, and none of them stayed open longer than one year! Every year a study is done comparing those invasive techniques to the non-invasive medication route. All the studies show that the death rate is higher for the invasive procedures. Every year the doctors pay no attention. Five billion dollars is a lot of incentive! Don't forget, find all about CHF under the words: Site Index. Bill. billdog@gate.net


Bill D's April 7 reply to Christine's April 6, 1999 - Hi Christine, Welcome to Jon's Place! This is a support group for all the people whose heart problems have precipitated Congestive Heart Failure. The symptoms are being tired all the time, shortness of breath and lots more. I would be very careful of any diet that says you can dispense with your insulin. I read Dick Quinn's book, "Left for Dead" and I think it's a lot of bull! <g> (If Mad Jack is around, I'll get an argument on that!) You didn't say what your ejection fraction was nor did you say you have been diagnosed with CHF. You are taking some of our medicines but not our important ones. Are you being seen by a cardiologist or by some other doctor? Your not being able to lie down might be being caused by retaining water. Have they told you to restrict your fluids and eat less than 2000mg sodium? Please check out the information Jon has hidden under the words "Site Index" at the top of the page. Bill. billdog@gate.net


Jack's April 7 reply to Christine's April 6, 1999 - Hi Christine, You need to be very leery of "alleged" doctors who claim miracles from special diets or herbal remedies. They can be dangerous and untrue. If they really worked, everybody would be using them because doctors are really only in it for the money and they could make more money if the so-called easy miracle fads were legitimate, but they are not. Anybody can write a book but that doesn't make the book or its claims true. If you want to continue living, just keep doing what you have been doing for the past 21 years.
     Dick Quinn can swear by anything he wants to. There is no evidence that soy lecithin cyrstals do anything except provide a microscopic amount of nutrition. The claim that they can do an artery flush cannot be substantiated. Eating lecithin does not place a roto-rooter into your circulatory system. Cayenne is good and garlic is good but both of them are food. You can buy whole garlic for $2 a pound.You can buy powdered garlic and powdered cayenne for $1 for a 2 ounce container. Buy them. Eat them. They don't become wonder drugs when someone puts them in a capsule and charges you 50 ¢ for each capsule.
     Hawthorne is a drug. It performs the same actions as prescription drugs. If you take hawthorne, it is exactly the same as taking 2 prescriptions that do the same thing but hawthorne is not controlled in it's purity. The active drug varies from plant to plant and bottle to bottle, no matter what unsupportable claims the manufacturer puts on the bottle. Taking it with your "real" medications can kill you. Jack. maddjak@hotmail.com


Marion G, April 7, 1999 - Hi, I hope I got everyone new to the board, anyway, Hi! I'm new too. I've been sick with CHF due to dilated cardiomyopathy and the cause is unknown, hence the term idiopathic. Thanks to all who wrote to me and welcomed me to Jon's place. I find it heart warming, a slight pun, to know I'm not alone with the problems I have. Today was one of those days where SOB was pretty evident but I know this is not a sign of impending doom. It must be something I either ate yesterday or the fact that I stayed up late to watch NYPD Blue. I also want to ask if anyone is still employed? I am still able to work part time at a pretty sedentary position. It is also low stress so I plan to work as long as I can. I finished cardiac rehab, which I had a love/hate relationship with, a year ago. Now, I basically walk and one night a week I still play volleyball. When I was sick with an EF of 20%, I was still playing till the night I went to the ER in heart failure. I've been playing for about 8 or 9 years. It's a fun league and they all know I have a bad heart. If I run into trouble, I stop. Actually, I stop before I have a problem but I just thought I'd stop by and say hi. Thanks for the warm welcome. Marion. MGodzik@aol.com


Kim S, April 7, 1999 - Hi everyone, I would like to know how many of us here receive Social Security benefits? Just recently I was informed that my case is being reviewed (it has been 8 months since diagnosis). At diagnosis I had an EF of 10%. My EF is now 40% after 8 months of treatment. I've read Jon's SSD page but I'm looking for everyone's personal experience. I do expect to be turned down. If I am, should I pursue it being that I now have an EF of 40%? I was preparing to work again after the birth of my baby. During my search for a new job is when I was diagnosed. Temporary Disability turned me down and we have been struggling financially for the past 8 months. Any comments are certainly appreciated! Have a great day. lalakimmie@aol.com


Julia H, April 7, 1999 - Hi, I am so relieved to find this site. I had a baby 10 months ago and was just diagnosed last week with pp cardiomyopathy. I don't have complete faith in my cardiologist and am going for a second opinion. I am in the Orlando area, in case anyone knows anyone here who specializes in CHF. How can I find out this info on my own? Just start calling docs? Thanks! Love, Julia. Juliahenry@aol.com
 
Jon's Note: See the Links page for support groups and finding a doc


Bruce S' April 8 reply to Marion G's April 7, 1999 - Hi Marion, I love to play volleyball, and do at church when I get the chance. The only thing is I couldn't play before CHF and I still can't play. I'm going to play golf tomorrow and my CHF didn't help this game either. Marion, it is good to see you can do these things. Thanks to you people who e-mailed me about gardening. I'll be getting back in touch soon. Everyone have a great day! baspencer@rtelco.net


Bill D's April 8 reply to Gail B's April 7, 1999 - Hi Gail, About the K-Dur giving you problems, I looked it up at the Mayo Clinic Site. Sure enough, down there in "Rare" was a side effect similar to what you described. I also found we should beware of digoxin and our ACE inhibitors! I've been taking them together for years! Maybe we should eat bananas all day long? <g> I found a big banana equals 7meq. Let's see, I take 20mq of K-Dur so if we ate 3 bananas a day, we'd get all the potassium we need! Welcome to Jon's Place. Bill. billdog@gate.net


Debbie R's April 8 reply to Marion G's April 7, 1999 - Hi Marion, I'm also very new here. I only got my computer about a month ago. Thank you all for making this such a great forum. Thank you Jon for all your work. I have learned so much from all of you, much more in the last month than in the last year since my full blown CHF attack that ended me up in the hospital for 13 days. Hospital food is the pits! Anyway, Marion, I was off work for 3 months after my hospital stay but the doctor approved me to go back to work on my birthday last year. On June 1, I was told I could go back to work. So I started out slow, 3 days a week and am now am at 4 days, which seems fine, and I think I may just stay at that. I am a hair stylist, which of course means standing on my feet but I try to give myself plenty of time for my clients so I don't rush too much. I've not been as careful with that lately. This is a good reminder to myself to watch myself more carefully. If we don't watch out for ourselves, no one else will.
     I do have a question too. I am on a lot of the same meds a lot of you are on: Lasix, Lanoxin, Diovan, Coreg and Coumadin but I haven't seen anyone mention nitroglycerine. I'm taking 2.5mg twice daily. Is anyone else taking nitro? It cracks me up that I am taking something that in greater quanity will blow something up. Anyone wanting to correspond, feel free. Thanks. Debbiedo55@aol.com


Linda O's April 8 reply to Candy's April 7, 1999 - Hi Candy, I have CHF too, and last August had my gallbladder removed. I got along fine. I was scared and hated to go to sleep. It does seem to take a little longer to heal. I have scraped my skin and it also seems to take longer. Jack, I thank you for the good info and I miss your wit. Linda O, age 59, EF 24. norvalo@clarinda.heartland.net


Kristine Conner, April 8, 1999 - Hello Everyone, I am a medical writer who is currently working on a new educational Website on heart failure for the American Heart Association. The AHA decided to take on this project after receiving multiple requests for more extensive information about heart failure. I work with a medical communications company that has been hired to do the research and writing for the site.
     We believe that the site will be much more effective if it actually features advice from heart failure patients themselves so I am seeking patients who might be willing to participate. If you're interested, please e-mail me with your best advice for other heart failure patients that deals with one of the following four areas: diet, lifestyle and exercise, treatment, and working with your physician. What one or two steps did you take that made a real difference in your condition? How did you make these changes part of your life? How might others benefit from your experience? What do other heart failure patients need to know about any of these four areas?
     When you send your advice to me, please include your gender, age, past or present occupation, hometown, and date of diagnosis. Please also indicate whether or not you'd be willing to be contacted by phone. The AHA wants to feature about 5 or 6 patients, and hopes to include people of different ages and backgrounds. Therefore, we may not be able to use all the responses we receive. However, all of them will be used in some way to shape the information we include on the site as a whole. Please feel free to e-mail me with any questions. I look forward to hearing from some of you. Please help me (and the AHA) help others in your situation. Gratefully, Kristine. kconner@bellatlantic.net


Ben B's April 8 reply to Gail B's April 7, 1999 - Hi, I am curious if anybody else besides Gail experienced this excessive sweating and if it is a known symptom of CHF? For about a year from 1992 to 1993, I had extreme sweating, soaking my clothes even in cold weather. This happened almost every day, all the time. Of course, since I was stupid and not feeling any other symptoms, I didn't see the doctors. I have been wondering if this might have been an early sign of my heart problem. bdbrinkman@juno.com


Jon's April 8 reply to Ben B's April 8, 1999 - Hi Ben, I had the same thing not long before diagnosis with CHF. Once I started sweating, I could not stop, period. Jon.


Louise N, April 8, 1999 - Hi everyone, I haven't posted in a long time but I do read often. I was wondering if anyone else has had my experience with severe muscle aches after sleeping. Now I have had a constant headache for 5 days with no relief, except with a narcotic. I have a feeling it may be medicine related, although I have not had anything changed for 6 months. I currently take Digoxin, Lasix, 12.5mg Coreg twice a day, Tofranil, Xanax, Lipitor, HRT therapy, Vasotec and cyclert, plus CoQ10 and gingko biloba. I have had these symptoms for a long time but this 5 day headache is the worst. I am not even sure which specialist I should go to. Any suggestions? By the way, I have had ICDM for 5 years and a year ago, I decompensated and my EF was 10, it is now about 25. In answer to a post, I was able to get Social Security on the first round. confuzed45@worldnet.att.net
 
Jon's Note: Lipitor can cause headache, although if you've been on it for awhile without any, this may not be it


Lori Wilson, April 8, 1999 - Hi everyone, Just a short message to tell you that I'm home (actually I'm at my sister's house). My mitral valve replacement was successful - a 5 hour surgery. I was off the ventilator a few hours afterward and out of ICU within a day. The worst pain is the cracked sternum and a broken rib but everything seems to be going smoothly (knock on wood). Thank you for all the nice messages to Jeremy and me. I can't believe we're getting married in 9 days! I will be able to walk down the aisle, thank goodness. It will be a long recovery but I'm already on my way. Again, thank you all. Lori Wilson. lwilson@cdsinet.net


Joy R, April 8, 1999 - Hi, Since I have found this site, I have made many friends and hope to make many more. For those of you who don't know me, I have to infuse IV dobutamine for my heart in the daytime and infuse hyperalimentation in the night, thus I'm on IVs 24 hours a day but my quality of life is better for doing this so I won't complain. Like so many of you, I have DCM with CHF. It's just I didn't do well with medicines by mouth, thus the IVs but I didn't post to talk about myself but the others who have helped so many through this site: Jon, Ginger, and Bill D; Ginger for making another site and to Bill D, who must be the most compassionate and caring person for responding to so many others in need; Also to Vincent and Al M, who have helped me when I've had problems with this computer, and to Murph for e-mailing me inspiration. These are just a few of the wonderful people that post here and I am richer in life by finding all of you. My days are brighter now. Thanks. Joy R. wapalareme@aol.com


Marty's April 8 reply to Kim S' April 7, 1999 - Hi Kim, I'm usually pretty quiet on the board but I think I might be of some assistance with your SSD query. I was diagnosed with idiopathic DCM, CHF and chronic a-fib in 9/97. I worked then as a police officer but within 6 months I was placed on disability retirement. This process required me to go through the SSD process as well. At first I was rejected, as I think everybody is, it seems but I filed a request for reconsideration and I was fortunately approved.
     The thing to think about is how does CHF affect you? In my case, I seem to be really stable as a rock but in exchange for stability I also seem to have zero energy. My limbs constantly fall asleep and I have increasingly significant discomfort with any exertion, especially as any particular day wears on. At one time I was a runner but now I try to avoid a flight of stairs. I am on the full menu of meds: Coreg, Ace inhibitor, etc, and my EF varies from 25 to maybe 40. The doc says my readings are skewed due to the a-fib interference.
     I have tried to go back to work at various part-time activities as a trial work period. Each time I obviously exceed my body's activity comfort zone and I end up having to cut my hours way back. If I don't, I end up feeling absolutely terrible. What is left of my life is way too short for this! So, think hard how this disease is affecting you and place yourself in the rigors of work and see if you can do both the job and your own condiiton justice in the process. Marty. MartinBK@aol.com


Malcolm, April 8, 1999 - Hi, Just a note to compliment you on your site. I just discovered you today and think it's great. I have suffered from CHF for 8 years with the usual declining health. Glancing through these posts, I see most of us are asking "what else will help?" If anyone has any good news, please share it. Mac. macheath@nh.ultranet.com


Della R's April 8 reply to Kim S' April 7, 1999 - Hi Kim, You wanted to know if anyone is on Social Security. I am but not on Disability. I am old enough to just draw regular SS. I did apply for Disability in 1997 but was denied. At the time, I could barely navigate across our living room and stairs were out of the question. Any walking at all just pulled me to exhaustion and complete shortness of breath. Even shopping for groceries, I had to continually stop and lean on the cart or sit down and was tired all the time.
     Early in 1998, my cardiologist changed some of my meds and also my regular doctor increased my thyroid medication, which he said was grossly insufficient. He also said that could be an underlying factor to all my heart problems. I can't tell you how much better I have felt. However, I only think it may have been the synthroid that helped but my other meds were changed at the same time. I don't experience the angina nearly as often as I used to, not that it doesn't happen because I have already posted last week my most recent experience with CHF. It was rough. I love my docs, they are the best. Many of us who get regular blood tests may think if we had a thyroid deficiency we would have been told. The test for thyroid is a separate test and has to be ordered as such. It is not just done automatically. It affects the heart, so we should be aware.
     To Marion, I have returned to work full time but not to my usual work. By profession, I was a purchasing agent for a farm equipment manufacturer. I loved that job but it was totally stressful with a dozen crises a day. I took great pleasure in handling it all! It took a toll on me. I knew if I was ever able to work again it would have to be easy with no stress and be sedentary. I am now a transcriptionist, a job I hand picked. I love to type and no one bothers me, I only listen to recorded messages, don't talk to anyone (except at break and lunch, and I'm a happy camper. Someone posted earlier up there "Bless your hearts." I really like that. Take care and trust in the Lord. dellerdo@inw.net


Milo's April 9 reply to Mark E's March 13, 1999 - Hi, It sure feels good to be missed and that I am able to help people also is important to me. I hope all goes well with you and thank you for the compliment. Milo. via paulmcferrin@worldnet.att.net


Milo's April 9 reply to Jon's March 13, 1999 - Hi Jon, You sent down some research on angioplasty. The subject is Update/Exercise and Angioplasty/Vasodilators. The word in question is "restenosis" which is used 11 times, and I don't know and can't find out what it means. Please explain. Milo. via paulmcferrin@worldnet.att.net


Jon's April 9 reply to Milo's April 9, 1999 - Hi Milo, Restenosis is re-blockage. An artery that has been cleared out by angioplasty or bypass surgery but closes up later has restenosed. Jon.


Milo's April 9 reply to Bill D's March 12, 1999 - Hi Bill, That was a good one for a good laugh! Milo. via paulmcferrin@worldnet.att.net


Milo, April 9, 1999 - Hi, After reading many posts, I find that the most used coping method is faith. Whatever works, as long as we cope. If this is the most popular way of coping, than most of the posts are about faith. I agree completely with Jon's post of March 29. For those of us who want to actually debate with Jon about faith, fine, but e-mail him directly.
     I do not believe in changing anyone's religion and find it a good way to cope. To degrade anyone's faith is mean. Those that do should give the matter much thought. To interfere with any coping method is cruel. It is not support, which is what the CHF board is all about. If atheists and agnostics find solace in what they believe, that is fine. Whatever works but religion is a very personal matter. Milo. via paulmcferrin@worldnet.att.net


Jon's April 9 reply to Milo's April 9, 1999 - Hi Milo, People have faith in different things, creatures or persons. My own faith is in Christ Jesus as God's Son. Others may have faith in the god of a specific church or religion, or they may place their faith in a church or religion itself, in science, Kali, Buddhist philosophy, or something else. For what it's worth, discussion about the faith that sustains us is welcome here, but remarks that are backed by no thought are not. I welcome debating my own beliefs, if it is thought out and serious, but I prefer to do this by e-mail since I get pretty tired if I have to post double or triple the number of usual messages here. :-) Vagueness and anger rather than thought and debate has so far been the order of the day for critics of my own beliefs so I haven't bothered with serious replies. Jon.


Milo's April 9 reply to Gene W's March 7, 1999 - Hi, I thought valve problems were reversible by adding a new valve. I would think that exhaustion would make CHF worse. If shorter hours are required, have your cardiologist send a request for shorter hours to your boss. Milo. via paulmcferrin@worldnet.att.net


Milo's April 9 reply to Jeanette W's March 11, 1999 - Hi, You write that you have not really dealt with your problem. We can help you but we cannot do it for you. It is scary not only to you but for all of us and we all have our ways of dealing with our problems. There is much help for you here at Jon's Place. Perhaps you could start by reading The Manual, writing a bio and trying to cope. Please post more with the questions that are bothering you and we will do our best to answer them and support you in all the ways we can. You must face and accept your fears. When you wrote your post, you were on the right path. That was a first step. This board is also for venting feelings and anger. There always is anger. Sometimes a good cry can be very helpful in releasing many feelings. We are not faced with a big job but with a challenge. The greatest challenge of our lives, and we shall win, not to say we will be cured, but how we can cope and cope we do. We really want to help you. A bio will help us to know you better. Your age, EF and things about your family, all will help us help you. Humor is very important. Milo. via paulmcferrin@worldnet.att.net


Pat D, April 9, 1999 - Hi Jon and everybody, My story is bizarre. I was diagnosed with CHF in 1991 and advised I needed a transplant. After more extensive testing, they decided I didn't have it at all, and that my problem was allergies. Well, that was good news except I've continued to go downhill physically and last month, I was again diagnosed with CHF, Class 3. The probabe cause is cardiomyopathy, although I've had long-standing hard-to-control hypertension as well and I probably have sleep apnea. At least now I have an explanation for the way I feel. It's nice to know I haven't lost my mind! I'd love to hear from others as I'm feeling a bit overwhelmed right now. Since I was once told I had it and then didn't have it, my family is dubious about the current diagnosis, so I'm also feeling a bit alone as well. I can't really blame them but I have no doubt that I have it because I live in my body and it's not fun. I'm glad I found this place. It's helpful to know others understand. Pat DeLeon. patj98@yahoo.com


Jamie S' April 9 reply to Lori Wilson's April 8, 1999 - Hi, I am very happy that your surgery went so well. I hope that the recovery is fast. Congratulations on the wedding, it will be beautiful. April 16 is our 5 year wedding anniversary. My best to you and your family. Jamie.


Gerald Fansler's April 9 reply to Debbie R's April 8, 1999 - Hi, Boy do I take nitro. I wear a 0.8 per hour patch and take 3-4 when big exertion is coming up, like the Nordic track for 12 minutes or a load of compost from the back to front. I don't enjoy angina but I know it's ahead when exertion is called for or any kind of extra effort. Some days nitro gets me up a hill and other days I just slow down and take it steady but under the angina pace. I wear the patches at night if I want to lay down. Without my patch, I spend the night in a chair; too much fluid on my lungs will cause the same problem and I take a second 80mg of Lasix. If I'm still swollen and holding fluid, I take zaroxolyn. glf25685646@msn.com


Jill S, April 9, 1999 - Hi, I don't post often but I'm an oldie here. I have started Coreg at a very small dose in the past 6 months after an unsuccessful attempt earlier with this drug. I have IDCM with an EF of 28%. I have normally low blood pressure and will probably never tolerate anything but the minimally effective dose, which I believe is 12.5mg twice a day. My blood pressure is staying in the acceptable range but I have gained 10 pounds! My cardiologist and I don't believe this is water retention since I am not having the symptoms of SOB and coughing that I was when first diagnosed. I think it is just fat! Has anyone else had this problem? Also, I wake up hungry a lot, which is definitely not normal for me. Thanks for your input. jilschro@jps.net


Mac, April 11, 1999 - Hi Jon and everybody, I have noticed a lot of us are having problems with angina. I have used the patches as most of you have, but for the last 2 years my doctor has me taking 30mg of Imdur. This is a common drug used to treat angina (long lasting nitro), and in my case has pretty much solved the chest pain problem. He started me on 10mg and worked up from there. I still can barely walk across the room without losing my breath but the angina is much less. If I can be of help to anyone please e-mail me. I've had CHF for 8 years and know it's no fun. Talk to ya later. Mac. macheath@nh.ultranet.com


Jana B, April 11, 1999 - Hi, I am new here and to CHF and DCM. I was diagnosed 2 months ago, with an EF of 21%. I am on Coreg and all the other normal stuff. I am 35 years old and they don't know what caused all this in me. I have 2 questions: I didn't have enough work credits to get SSD because most of my work history was with the county and apparently they don't pay into SS. Since I am no longer employed by the county, I can't get their Disability and for the last 3 years I have been self-employed, not making much though. Is there any other sort of Disability payments out there? I dont qualify for SSI.
     My next question is this: What is it with our unbelieving families? My siblings don't believe I am sick and I don't think my hubby did either till the doctor called him. There are not enough days left in life for me to worry about what my family thinks, but sometimes - like when they dump kids off at my house - I get sooo mad at them for not understanding that I am sick! Some days are better than others but when I am sick, I am sick! I have gotten absolutely no support from them. They just keep saying "the doctors don't know what they are talking about." I go May 6th to UCLA to meet the heart transplant team. Sometimes I think that when I die, they will believe me but I have total faith that God is going to heal me. I am glad I have finally found a place that understands. Jana. JByers4u@aol.com


Marty's April 11 reply to Jack W's April 10, 1999 - Hi, Your post made me feel so sad for you and your family. However, your father has to be an extra, extra special person. Your family is blessed by him. As you say, disease is relentless and life so fragile and precious; a fundamental message lost on the healthy until their turn comes. My prayer for you and your family are for the filling presence of the Holy Spirit, to assist you through this time of agony. My prayers are with your mother, may she find true peace. God bless you! Marty, DCM, EF 30. MartinBK@aol.com


Doug K, April 11, 1999 - Hi all, It's been awhile since posting again. I've been switching over to a new ISP and what fun that is! I just thought I would notify you of the change in e-mail address. It is douglas.knuth@gte.net although I am sure that it will be at the bottom of this message as well. I am doing pretty well right now, as far as my heart goes. My TIAs have stopped with the Coumadin but I go Tuesday to a Glaucoma specialist as my optometrist has seen optic nerve damage. To Luc, I hope you are feeling better today! Best to you Jon, and your family. I hope you all have a good day. douglas.knuth@gte.net


Christy Marshall, April 11, 1999 - Hi everyone, I just found this Website yesterday and I am driving my family nuts by refusing to get off the "stoopid pooter." They will be relieved to know that I have read the entire page and reviewed most of the links by now and can once again be a part of society! Thank you Jon, for this site, and to everyone here, interacting and sharing experiences. Until finding this site, I was feeling sorta alone out here.
     I was diagnosed with DCM on my 41st birthday, 6 weeks ago. The only reason they found it was because I had a series of TIAs (like 6 of them over an 8 hour period) where I lost my ability to communicate. I couldn't speak or type coherent words, sentences or ideas but I could think them! To complicate this, I was flying out of town on business, so the episodes were while traveling. I never thought I would be thankful I had the TIAs but it seems these were early warning symptoms of DCM and probably prevented me from going into chronic CHF. My EF is 30%.
     Again, I feel fortunate the place I was traveling to was Denton, Texas, which I later found out is a leading area in cardiological medicine. In the emergency room, they performed x-rays, ECG, CT scans, Heparin IV and blood work. Upon admission, I received an echocardiogram, thallium stress test with MUGA, MRIs, MRAs, constant blood work and started on what seemed to be a multitude of drugs. I got a lot concerned when out of the blue, 3 nurses dragging a crash cart careened into my hospital room. I was on the phone and startled. They were staring at me with their jaws on the floor. I had just had a recorded non-sustained VT and they figured I'd be passed out on the floor. I didn't even feel it. When I returned home, I had a 24 hour holter monitor which still recorded VTs. I submitted to an EP test 3 weeks ago, resulting in a dual chamber defibrillator.
     It's been a pretty crazy 6 weeks for myself, my significant other and my 7 year old son. So today, I've got more questions than ever. After reading the bios and posts, I'm now very concerned about what will come next. It's odd to me that I have no pain but I've been exhausted, breathless and dizzy, presumably from drugs and low blood pressure (100/60). I'm currently on Coumadin to prevent additional TIAs or stroke, Lasix, Lanoxin, Coreg, Klor-con (potassium) and Prinivil. My doctor suggested changing from Coumadin to aspirin therapy in 6 months (yippie!) but it's a wait and see thing. Being on short term disability, I have returned to work 4 hours a day.
     Am I being realistic that I can work full-time again? I work as a manager of computer systems in a corporate environment; hardly stree free. If anyone has been successful or unsuccessful at returning to work at a stressful job, I'd be very interested. Lastly, I can't get the cardiologists to talk about vitamins. I'd love to hear experiences that folks have had. I currently take a multivitamin with minerals, 1000mg calcium, 1000mg C and 400IU E and B complex with folic acid. I've been researching CoQ10 but would love some advice about dose. Sorry this post is so long. Thank you all for the pearls of wisdom and experiences you are sharing with everyone. breezip@hotmail.com


Marion G's April 11 reply to Jack W's April 10, 1999 - Hi, I'm so sorry to hear about your mother. It has to be such a sad thing. I'll keep her, your family and everyone else here in my prayers. I can sympathize with your thoughts about your wife. I have a husband who worries and gets very afraid whenever I seem to be feeling bad or have to go to the doctor because of some medical reason or test. I really hate to tell him when I'm not feeling that good because he worries and I find him sitting and watching me. I'd like to go BOO and see if he faints or ask if my head spun around 360° or something but I think he would be hurt, not laugh. I don't know how to make it any easier for him. If I start talking about death and dying, he tries to avoid the conversation so I usually don't say too much. Well, I have to go and see what the family is up to while I sit here and type. Today is one of those "short of breath" days. Take care. MGodzik@aol.com


Jack's April 11 reply to Pat L's April 10, 1999 - Hello Pat, Here's a Website that gives Coreg info: http://www.virtualdrugstore.com/CHF/carvediolol.html Many people want to attribute weight gain to something other than themselves but that is not usually where the problem lies. If you were 40 pounds overweight before, you probably spent a significant portion of your life being overweight. It's much easier for someone who was overweight to gain weight again. As you said, "I have had an immense increase in appetite." Appetite can be controlled and when it is not controlled, you gain weight. Besides gaining 16 pounds in 3 years doesn't sound unreasonable. Now, if you had gained 16 pounds in 2 weeks, I'd be looking for an explanation. Don't give in to your appetite and you will most likely lose the weight. Looking for the wrong answers always supplies you with the wrong answers. Many of the "possible" side effects listed for drugs don't really exist because when they do trials on new drugs the subjects inform the researchers of all the new things they have found wrong with themselves. Many of their "symptoms" have nothing to do with the drug but they still get listed as possibilities. Jack. maddjak@hotmail.com


Bill D's April 11 reply to Brenda Snow's April 10, 1999 - Hi Brenda, Welcome to Jon's Place! I'm glad you found all the information under Jon's Site Index. The forum just had its third birthday on April 10th. I wonder how many people have visited us in the last 3 years? Bill. billdog@gate.net


Bill D's April 12 reply to Cooper B's April 10, 1999 - Hi Cooper, Welcome to Jon's Place. I can't imagine waiting in the hospital for 6 months! You must need constant IV meds and oxygen. If you go to Who's Who under Site Index, look up Wanda Brewer and Will. They both got heart transplants and would be happy to swap e-mail with you. I think Wanda waited in the hospital for about 3 months. Thanks for the good advice. We feel the same way. Bill. billdog@gate.net


Bill D's April 12 reply to Jack W's April 10, 1999 - Hi Jack, Does your father have help taking care of your mother? I hope so. Often the caregiver's health fails under the burden. Is there any chance your Mom could go to a home? If she doesn't recognize her family, she might not be aware of the change. Your Dad could visit her every day and be sure she's getting proper treatment. Bill. billdog@gate.net


Paul M's April 12 reply to Marion G's April 10, 1999 - Hi Marion, That magic 5 year number used to be true. With all of the modern meds today, those numbers have not really been updated. Many doctors will hang on to them, however. Coreg is one such drug that is responsible for extending patient life. Doctors are now learning that ACE inhibitors and beta-blockers (Coreg is one) are essential meds for treatment of CHF/DCM.
     About final arrangements, yes, my wife and I have made final arrangements. She decided a while back that she did not want to make those decissions at the time of my death so we both made them and are paying for them over 7 years. The major decision was to choose the casket. We also purchased burial plots in my home town. We are both comfortable that these decisions are now out of the way. paulmcferrin@worldnet.att.net


Jane M's April 12 reply to Christy M's April 11, 1999 - Hi Christy, You were wondering if any of us worked full time at a stressful job. I'm a fifth grade teacher and I am working full time. I did take 3 months off last year after I was diagnosed. I also am dealing with cancer, so I have a lot on my plate. I'm the only person in my cancer support group who is working. I haven't been able to attend support groups for CHF because they are held during the day.
     I have only posted once before, right after I was diagnosed in December of 1997, but I do read posts every day. Many of you have written that you were misdiagnosed with asthma before the diagnosis of DCM and CHF. I also have asthma and sometimes the symptoms are confusing as to which problem I need to deal with. It really is possible to have both diseases. Since I do have asthma, beta-blockers are out of the question. I tried Coreg last summer for 2 weeks at the lowest dose, and it just didn't work. At first I felt sorry for myself because I couldn't take advantage of this drug, but I am well compensated with my other meds. My EF is a mystery to me because it is not reported on the echo report. However, the tech told me it was 55 in December. Whether it is or isn't is of no concern to me. I just go by how I feel. I do everything I am supposed to do and walk and swim every day. I feel quite well except for the fatigue which comes at the end of a long school day. Anyway, this is long and rambling. My point is that some of us do lead normal lives. I am always aware that I am ill, but I'm making the best of it. I'm enjoying my life, and that's important. Stay well, everyone. Jane M. jmerritt@iserv.net


Sara S' April 12 reply to Jana B's April 11, 1999 - Hi everyone, We all agree what a wonderful site Jon has and all the friends and support we are getting but Jana, don't get upset about family or friends who don't understand. The old saying "out of sight, out of mind" applies. They are in denial that someone they love is that sick. It might help if one of your siblings went to the doctor with you. I'm told many times, "you're taking too much medicine" or "you can't be that sick since you were out all day" so all you should do is concentrate on staying well and not worry whether they accept your illness or not. Stay well everyone. I will be going north for my cath when my blood pressure gets up a little and will be checking in at Georgetown Hospital in Washington DC.


Carolann S' April 12 reply to Jana B's April 11, 1999 - Welcome Jana, I myself was also just diagnosed less then a month ago with DCM. I am fortunate to have both short and long disability offered by my employer. I am sorry but I cannot offer any advice with regards to your disability problem but I can emphasize with you on the family dilemma. I don't look sick and often don't act sick since starting on the round of meds. However I have continued a water aerobics program, as well as listening to my body. When it says rest, I rest. I don't think my husband or children realize that I am sick. My hubby just thinks I use it as an excuse not to do alot of the house work that makes me so tired. My plan is to take him to the doctor with me on the next visit.
     My family is a different story. Both my father and paternal grandfather have been diagnosed with DCM. However, father was 50 and grandfather was 80+. I am only 35. So they seem to understand my need to rest when needed. Now, if my brother and coworkers would just understand, I would be great. My advice is to lay it on the line with family members. Do not let them drop off children when you are not up to the caretaking responsibility. Maybe have these family members read Jon's site to get them to further understand your difficulites. I wish you all the best. Carolann. saphirebbw@aol.com
 
Jon's Note: Print out The Manual for them


Joe D's April 12 reply to Pat D's April 10, 1999 - Hi, Regarding numbness in arms, I have had minor numbness and major tingling in lower arms and hands and lower legs and feet since about the time I was diagnosed with DCM five years ago. It comes and goes, but is noticeable most days. I have been to 4 cardiologists, 3 neurologists, 3 psychiatrists and 2 endocrinologists, and have had MRIs of my head and back, and numerous muscle and nerve tests. None have been able to determine a cause of the tingling and numbness. I think it is related to the DCM and my EF of around 45% but the cardiologists say they haven't seen these symptoms in someone with an EF as high as mine. The doctors have in essence told me to just live with it. However, as Jon said, you should have the symptoms checked. Krait008@aol.com


Rick M's April 12 reply to Jana B's April 11, 1999 - Hi, I can't help you deal with SSD, but there many here who can. Regarding your unbelieving family, I think I can. The reason they don't want to believe you're sick is because your sickness would affect them. If you were "really" sick, then they, as your family, would have to do something to help you, and that's not something which fits in with their plans right now. They are not evil people but they are not the loving bastions of support you need right now. Dropping their kids off on you is really the end. As a grandfather, there is nothing I would rather do than have my grandchildren dropped off at my house but everyone knows that old Rick, at 74 and a Class 4 CHFer, isn't up to it. What you have to do is make a stand like mine, and stick to it. I suggest that you go to The Manual on this site, set your browser for medium or small type, then print out the whole thing. Make one for each sibling and insist they read it. They may not want to because ignorance is bliss but they owe it to you. Let me know how it works. rearadml@iu.net


David A, April 12, 1999 - Hi, The last time I sent a post to Jon's Place, I was just beginning my journey with Coreg, about mid-December of 1998. Today I am at 18.75mg twice a day. My increase in Coreg was uneventful until I took the transition dosage from 12.5 to 25mg twice a day. That increase really said hell-o David! I began the 25mg dose on a Friday night, (my Friday nights aren't what they used to be!) so that if I had any side effects I would not be at work and could go right to the doctor. After that first dose at 25mg, my pulse dropped down to 47-48 bpm. My blood pressure was low, like 85/48 but I felt ok and was not dizzy. Because of this reaction to 25mg, I skipped the next day's evening dose and the following day I cut it to 18.75mg, the doctor aggreeing of course, and that is where I have stayed.
     I've had good and bad days at this level, with some shortness of breath, but I've still been able to work a 40-50 hour per week job on this medication. Many days I would feel somewhat detached or not quite with it, however I now feel that my body has adjusted to this new level and I have suggested to the clinic I attend that I am now ready for 25mg. My question to all my friends is this: Over the past month or so, I've noticed that my systolic BP has been on the rise, often in the 120's, like the good old days while my lower number remains in the mid-60s. My pulse has stayed in the 60s, with an occassional 70 on the high and 58-59ish on the low. Before Coreg, my pulse was always in the 80's-90's. What do I make of this BP change? Anything? Maybe it is job related. I can relate to Della R's comments of April 8th and the job she had. I'm a senior buyer for an optical manufacturer and there are at least 12 crises a day on the job, plus lay-offs and all that stuff that makes things more exciting. <G>
     Still, on other occassions my systolic BP is back to the 100's or 110's, so it does fluctuate. I guess my big question is should I be concerned about this BP change? I have read and through my own experience I know that BP lowers substantially once on Coreg, so I was a little surprised with these elevated systolic readings. I have an appointment at the clinic on April 19th for my next check up and this will be a topic of conversation. Thank you to everyone and keep the faith. David A. DEZEN@worldnet.att.net


Norman, April 12, 1999 - Hi, I was just diagnosed with CHF and I am really confused about it. Will I be able to lead a normal life with this disease, or will I need a heart transplant? What exactly is CHF? Foundstuff@aol.com


Jo, April 12, 1999 - Hi, Well, I just discovered this site and I can't believe there are so many others with this problem. I was diagnosed with cardiomyopathy and CHF 5 years ago. I'm a 46 year old female. It apparently was caused by a virus of some kind. I was one of those people who was never sick, don't have high blood pressure or any of the usual causes of heart disease. I take Demadex, Hyzaar, Lanoxin and Atenelol. I am tired all the time, have gained weight and sweat excessively - not necessarily at night - but it doesn't take anything to get me going! I did finally get SSD after 2 years of trying so any of you who are in the process, don't give up! I blew it off for a year after they turned me down the first time, then I got a lawyer and I finally won. I don't think I could have done it without the lawyer. They don't get paid unless you get it so don't let money deter you. I found this site because I am searching for a new medication someone told me about for people with CHF. They saw something on 20/20 or Dateline or one of those shows a couple of weeks ago. The FDA has just approved it and apparently people have had great success with it. I'm talking about people being cured! Of course, the person who told me about it couldn't remember the name of it so if any of you know what I'm talking about, please let me know. By the way, many of you are referring to EF. What is that? Thanks for this site, too! mamaluchee@aol.com


Audrey, April 12, 1999 - Hi, I was happy to hear from someone concerning cardiac rehab and want to thank Lee for replying to my request. I found out I didn't qualify for criteria by Medicare for program, so my doctor had me wear a Holter monitor for 48 hours. They are trying to adjust my meds in order to control my fast heart rate. I understand walking is very good, so I am doing that at present. Yes, depression is a very big factor in CHF. I have some very, very good days and then there are others,... I would like hearing from other CHFers. anoll61628@aol.com


Cathy P, April 12, 1999 - Hi everyone, I am still out here and doing ok. Hey, that is better than not ok. Has anyone tried the neurostimulation tense? It may be my next step. I still do not post often but do keep in touch as I feel up to it. Let me hear from you. Cathy. cpalmer@megalink.net


Lee R's April 12 reply to Jana B's April 11, 1999 - Hi Jana, and welcome! You will certainly get a lot of support here but perhaps you have to learn to say "no" to those that just dump the kids off. A good start might be to print up a copy of The Manual at Jon's site and let your siblings read it. I have DCM too, and know the feelings of being tired and worn out. You are probably hard pressed to take care of your own family's needs, let alone watching others' children. I also want to wish you the best with the heart transplant team. Please get that family straightened out. Perhaps if they hear it from your husband, it may carry more weight but it really shouldn't work that way! I don't know what to tell you about the disability; it does not sound too good to me. Do keep in touch with us, we'll help all we can. Lee. LeeRoush@aol.com


Lee R's April 12 reply to Christy M's April 11, 1999 - Hi Christy, Welcome to The Beat! What a birthday present, sorry to hear what happened, but it sounds like you were in good hands down in Texas. Thank goodness for the ICD (I presume they put one in). I am not surprised you did not feel the VT attack. I have an ICD and at Christmas the thing went off and I never had any warning. Those zappers really save lives! About work, I was 57 when it happened and close to retiring anyway and my physician just said no you can't work, particularly when he found out the amount of hours I was working and the stress! I'm quite happy at home. Stress is not good for heart patients and you should really sit down with your cardiologist and EP physician and discuss it with them. Most younger people here at The Beat feel better if they work but many are not able. Feel free to write to me directly anytime if you have questions about the ICD, and check out the page Jon has bookmarked on others who have multiple problems. You're gonna like us Christy, I've been on board since 1997 and Jon's Place is the best! Take care, Lee. LeeRoush@aol.com


Ginger's April 12 reply to Jana B's April 11, 1999 - Hiya's, I want to let you know the chat room is back to working. To all you newbies like Jana, we have chat 3 times a week. You can find the times on the chat page. As for family, when I was first diagnosed, everyone was very scared and helpful but after a few months when I was very lucky and my EF went up and I got some of my energy back, they decided I was no longer sick. All help stopped. Now it's a battle to get them to help me. Even with a higher EF, I have days where I am just plain tired. I don't know what the answer is but I do know you and all of us in this situation have to watch out for ourselves because no one else is gonna do it for us. So go slow and take one day at a time right now. Stay well ya'll and cya's at chat. Hugs, Ginger. mystery@laker.net


Milt's April 12 reply to Christy M's April 11, 1999 - Hi Christy, I was diagnosed with DCM-CHF in November of 1996. My EF dropped to 31. Then, after going on Coreg, it went up to 54 in February of 1999. I am a Maintenence Supervisor for an automotive company. I work in a powerhouse and this is, and always was, stressful. It became more stressful on Feb 1,1999, when it blew up. Although I was off work on the day of the explosion, I knew the 6 men who ultimately died. At an appointment with the cardiologist, I was complaining of aches and pains, sleepless nights, a whole laundry list of ailments. When she asked if I was under any stress, I replied no, except that my work place blew up. She said this was what was causing my problems and to let it go. I have worked every day since then but it is now catching up with me. I am tired and have the same aches and pains again. I have an appointment on April 22 and I will again ask a stupid question. Is working 7 days a week too much with CHF? I said I believe some of us can work stressful jobs and some of us cannot work at all, depending on what stage we are in. mmcpherson@msn.com


Melvin, April 12, 1999 - Hi everyone, I was diagnosed on February 8, 1999, as having CHF and was glad to find this site. My wife printed me a copy of The Manual and was I depressed but learned that I wasn't alone. I start cardiac rehab tomorrow and am hoping that exercise and my low-sodium diet will help strengthen my body and help my breathing. I am on furosemide, Accupril and digoxin. I have been nauseous most of the time, and off and on for the last 2 weeks have been throwing up. I was wondering if anyone else had this problem. My doctor today took me off Accupril because of a cough and is sending me for an upper GI test. He said it would be okay not taking a blood-pressure pill for a couple of weeks but to keep a check on my pressure. I would appreciate any input you could offer as I am still feeling down. My EF is 40. melvin@firstva.com


Milo's April 13 reply to Steve S' March 31, 1999 - Hi, On the 16th of April, with the echocardiogram, you will have a new EF reading. I am sure it will show an improvement. When you mention difference between your two legs, is it a problem like mine? I have a bad disk in my lower back and the doctor said that was my leg problem. Do you have back trouble in the lower back (lumbar)? Milo. via paulmcferrin@worldnet.att.net


Milo's April 13 reply to Gwendolyn's March 31, 1999 - Hi, Don't be scared. I got your SOS and I have that trouble too. This is over the counter stuff. If there is any blood involved, see your doctor. Docusate NA capsules, 100mg, is glycerin. The NA means sodium and glycerin rectal suppositories. These suppositories should induce a bowel movement within 15 to 30 minutes, so don't start running around until it works. Another one is anusol suppositories which is 51% starch and no warnings on the box about other illnesses. Another item is metamucil (smooth texture), sugar free, if diabetic. This is made from seaweed and is dietary fiber. The product has no dependency warnings. What it does is draw water from the intestines to make the stool soft. It means minimal wiping if you have pills. It will make the stool larger than normal, so if you take too much and then you have trouble passing the stool, it is because it is too big. These items should be taken by experience. Everyone's system is different so it is trial and error. Your problem is most likely meds and nerves. You must try to relax. If the intestinal tract is all tensed up, that can be a problem in itself. I have a book I would like you to read. It's called "The Bowel Book" by David Eholich (sp?) and George Wolf. You will find it is one of the most interesting books you have ever read. I should say one of the most rewarding books, with good humor. Good luck and if all of this fails, we can talk about enemas. Let me know, ok? Milo. via paulmcferrin@worldnet.att.net


Jana B, April 13, 1999

I've never made a fortune,
and I'll never make one now
But it really doesn't matter
'cause I'm happy anyhow.
As I go along my journey
I'm reaping better than I've sowed.
I'm drinking from the saucer
'Cause my cup has overflowed.
I don't have a lot riches
And sometimes the going's tough
But with kin and friends to love me
I think I'm rich enough.
I thank God for the blessings
That His mercy has bestowed.
I'm drinking from the saucer
'Cause my cup has overflowed.
He gives me strength and courage
When the way grows steep and rough,
I'll not ask for other blessings for
I'm already blessed enough.
May we never be too busy
To help bear another load.
Then we'll be drinking from the saucer
When our cups have overflowed.
 
unknown
JByers4u@aol.com

Bill D's April 13 reply to Robin's April 12, 1999 - Hi Robin, According to my Mayo Pharmacist CD, only a few of your father's medicines have loss of appetite or nausea, which cause the same thing. Here's what they say: Accupril: (less common), loss of taste; Lanoxin: (less common), loss of appetite, nausea; Pravachol: (more common), nausea. Most people don't have any problem taking the statins. I sure did and I tried 3 - Lipitor, Pracachol and Simvastatin. All of them made me nauseous. When I asked my cardiologist about it, he told me to stop for a few days and see. He said it's ok to just stop cold turkey on cholesterol lowering meds. I found after just 2 days, the nausea was gone. You might ask his doctor about experimenting with the other two. Bill. billdog@gate.net


Marion G's April 13 reply to Melvin's April 12, 1999 - Hello Melvin, I'm pretty new to this board and have IDCM. I've been visiting here for a while. I've been diagnosed for a little over 2 years. My initial symptoms were profuse sweating, shortness of breath most of the time and during the night I'd wake up gurgling. It sounded like a kid blowing bubbles through a straw in a glass of milk. I even taped it and brought it to my doctor, who said she thought it sounded like asthma. She never did an x-ray or anything else. I also had loss of appetite, unexplained nausea and vomiting, weight gain and exhaustion. The vomiting was not only what I ate right before but sometimes in the early morning, food that I had eaten over 24 hous before. I asked the doctor if it could be related to CHF. He said it could be because my body was trying to maintain blood and oxygen supply to the heart, lungs and brain, and it couldn't maintain it all so the digestion process kind of stopped every once in a while. So the stomach gets rid of it any way it can. Does that make sense? I know on the days that I feel really SOB, I have a lot of nausea. I don't eat as much as I used to and have added lots of fruits to my diet. They are easier for me to digest and have helped me lose 25lbs. I'm currently having a rough week or two. My shortness of breath is increasing and I know that I'm having one of those weeks. So I'm just trying to take it easier.
     Someone asked about numbness in the arms and such. I used to get cold arms and hands, I mean ice cold freezing arms and hands, mostly during the night. I think it has to do with CHF and DCM but the doctor wouldn't say one way or another.
     I was in cardiac rehab for 6 months, and eating a diet that restricts my sodium intake to under 2 grams a day, which can be tricky. I work part time, play non-competetive volleyball and do whatever I feel up to doing. I listen to my body, I plan the day according to the way I feel at the time. I try to maintain a somewhat normal lifestyle, and will as long as I can. I have also learned to let go and not drive myself crazy if I can't keep up with the Jones's, or feel guilty because my kids don't belong to the Scouts and 2 sports teams and every club going. I think it's more important for me to be able to be with them at home, helping with the things they need at home. My housework is never done perfectly because I can't do it any more. They have to chip in and do most of it, which isn't a really bad thing anyway. I still do the cooking, shlepping to the orthodontist, going to parent teacher conferences, class plays and so on. Basically, I just do what I can. I hope you enjoy rehab. Be patient with yourself, depression is common and it helps to come to places like this to vent and offer support, and get support from others in the same boat. Feel free to contact me via e-mail. Mgodzik@aol.com


Tom S, April 13, 1999 - Hi, Today starts the countdown to whether I will continue to receive Social Security Disability benefits, which I qualified for over 3 years ago. The review process started with a letter from Social Security and a packet of forms, 5 of which were release forms that only required my dated signature on each form. For those interested in the review process, I will keep you informed on the process as it involves me is progressing or possibly regressing. When I was first approved for SSD, this site was either in its infancy or non-existent and frankly, what I have read on this site concerns me. My approval for Disability came very swiftly and with no hitches. I only hope and pray for our family's financial sake that the review process is as swift and affirmative. I have not seen posts here regarding anyone who was reviewed, and I would be interested in any feedback from persons who have gone through the review process. Thanks and sincere best regards and good wishes to all.


Roger G, April 13, 1999 - Hi All, I have been away for awhile. My doctor changed me to a visit every 6 months instead of every 3 months. He said my heart sounds normal. The next echo is in 5 months. I am able to run short distances again and work in the garden. I pray for you all to have the same fortune even if it is short term like I may be experiencing.
     I was having headaches all the time but the doctor caught a high blood sugar situation. I started eating a high fiber diet and the headaches have gone away. RG2@prodigy.net


Roger G's April 13 reply to Gail E's April 10, 1999 - Hi Gail, Hang in there with the Coreg if you can. I was sick as a dog while I was on the way up to 25mg per day and I am now at 50mg. The sick goes away if you can tolerate the Coreg. It took me 4 months. I don't know if that is normal, short, or a long time. I wish you the best! RG2@Prodigy.net


Cooper's April 14 reply to Bill D's April 12, 1999 - Hi Bill, You are absolutely right, I am on one IV. The UNOS regulations. now require that a person be in the hospital with an IV in order to be a 1A status on the waiting list. The good news is that the docs are thinking of giving me an artifical heart (Novacor), which will allow me to go home and wait, and still be on the list. I am not sick, I just need a new heart. I will keep y'all posted. cbare9406@aol.com


Jo, April 14, 1999 - Hi. Okay guys, I found out what EF is, now I'm trying to find out what DCM is. Did I miss it in The Manual? By the way Jon, The Manual is wonderful. I wish I'd had it much sooner. I made several copies for friends and family! I was especially glad to find out about the short term memory loss being common among us. I thought I was losing my mind! Also, Ruth A, I tried to answer your e-mail but it keeps coming back. Let me hear from you again. mamaluchee@aol.com
 
Jon's Note: See Medspeak. Ruthie is moving again and doesn't have a new ISP yet


John B, April 14, 1999 - Hi, I read frequently but don't post. This month I will start on a clinical study for SmithKline Beecham SB 217242 for patients with stable Class 2-3 CHF. SB 217242 is a drug which blocks the effects of endothelins. If it is succesful, I will post again. However, I don't know if I will receive the drug, ACE inhibitors, or just a placebo. Jbott4015@aol.com


Jon's April 14 reply to John B's April 14, 1999 - Hi John, I flunked the pre-tests for that trial. If it's the same trial, you should receive one of several doses of the drug or a placebo, so the odds of getting the actual study drug in some dose are quite good. You have to switch to Vasotec if you are currently on a different ACE inhibitor, according to the original trial specs (which may have changed). My EF was too high - it has to be 35% or less to qualify. It is a promising approach and I would like to hear your results if you get in the trial. Jon.


Robin, April 14, 1999 - Hi, I've been reading quite a bit about SSD here. My dad, who has CHF, is already receiving Social Security since he is 67. If you have CHF, can you receive more money on SSD than regular Social Security?


Al M, April 14, 1999 - Hi, About heavy sweating, I, like a lot of others, had that some time ago and didn't know what that was all about, so I asked a friendly doc who was one of the ones doing the trial that I'm in. His comment: "Sweating can be due to excessive adrenergic tone, which is the case in heart failure (increased secretion of adrenaline or norepinephrine) but over time the hope is that the adrenergic nervous system will decrease its activity as the heart improves and therefore you should have less sweating, and a decreased heart rate."
     About weight gain and Coreg, apparently the heart produces a little known or talked about protein that helps the body maintain and gain weight. The defective heart does not produce this in any quantity. The same is true of cancer and AIDs patients. Since beta-blockers are "improving" the heart, very often the heart starts making these little proteins available to the body again. This apparently has been a suspicion for some time, but is being monitored closely in current beta-blocker trials. In my own situation, I lost about 65 to 70 lbs in about 3 months. In the 18 months being in this trial for Bucindilol, I have regained the weight. My diet did not change nor did the amount of exercise from when I lost, to now. My weight is again stable. Jack may be correct about pre-weight loss "over-weightness" but I was not overweight before and am not now. It may not be arranged like I would like it but there seems to be evidence that as the beta-blockers work, they also do some weight change action. A side benefit of this is that beta-blockers may become one of the meds given to cancer as well as AIDs patients to help them retain muscle mass and help with their immune systems.
     It's neat to have good docs who respond to one's questions and Jon's message about using your own good judgement and not allowing peer pressure push you is excellent advice. It is your boat as Bill calls it, if you're the captain, you get to call the shots. It's good to be the boss. Continued good health, all. Al M. ajmiii@web-access.net


Jon, April 14, 1999 - Hi, Severe weight loss of the type Al M describes with CHF, AIDS and cancer is usually associated with end-stage or very acute disease. It is called wasting ar cachexia. Compensated CHF doesn't usually produce such weight loss but for those in a very acute stage of disease, wasting is common. I'm talking about muscle and fat loss, not the fluid loss we have when first treated. That first fluid loss can be awesome. I recently read an article on what Al was talking about - that beta-blockers may soon be tried to help rebuild wasting in some diseased patients. I hope it works.
     As Jack describes, for people who have fought a weight problem for many years, it may be a continuation of that previous problem. For people who have never been overweight and whose CHF is well compensated, there is a weight gain happening that doesn't correspond to either of the 2 cases described. I fit in that category. I am 5'8" tall and went from 148lbs in high school to 199lbs at the peak of my weight lifting with extremely low body fat. Now, I am at 204 with far less muscle and far more fat! My cardiologist wants me at around 180 (there is still some muscle under there somewhere <g>).
     My weight gain was sudden - 5 pounds in 4 days - followed by a steady increase afterward for a total of 20 lbs before I was able to halt it - through drastically altered diet and a strict exercise program - neither of which has started to reverse the trend one little bit, which is the really weird part. This weight gain corresponded to a med change, increasing 25mg Coreg twice a day to 50mg Coreg twice a day. I never considerd Coreg a possible culprit until someone else mentioned it here - it just never occured to me. I will need some time to see if that is the problem or something else entirely. Maybe I just hit the next slower stage of metabolism for lazy middle-aged men. <g> I'll post results if I get any. Jon.


Jim H, April 14, 1999 - Hi all, I haven't posted for a while. I haven't talked to any of my doctors yet, but I did talk to one of the nurses. She said she is not sure if I still have CHF after having the mitral and tricuspid valves replaced in March of 1998. I will have to talk to the doctor about that. I did find out that I have ischemic cardiomyopthay, left ventrical disfunction, a-fib, emphysema and asthma, along with some other ailments not related to the heart. I use some msds, oxygen, breathing treatments and inhalers. I have had a-fib quite a lot the past couple of evenings when I get overly tired, but am doing good. I always think things could be worse. I could be waiting for a transplant or be on a lung machine. I consider myself very lucky and I feel if this is the burden the Lord has chosen for me to carry, I will carry it. It is very minute in comparison to the load He carried for me. God bless and I will be on when I learn some new info. Jim H.


Robert Farish, April 14, 1999 - Hello Marion, Christy and all of the board. Marion's post mentioned the same that I've heard from my doctors and others on this site, and that is the average time for a transplant is 5 years. Has anyone else heard of relatives or other people that have suffered with CHF/DCM, and have gone many more years without surgery? I have also heard that this time frame comes from old statistics and that new medicines will change that. I have a friend in Washington who told me her dad has had CHF for 30 years. Is that possible? Is there anyone out there with this problem who has gone on with it longer than the 5 years without transplant?
     Christy, I take 170mg CoQ10 in the morning and 170mg at night. I read that it was a great enzyme for the heart muscle. Of course, I'm 6'3" and weigh 215lbs. I am also encouraged with the gene therapy and other studies going on at this time. Is anyone here going through that now? I would like to hear from anyone who is going through any of these studies and how it is working for you. I also notice that my Zestril and Coreg are different from some others reported on this board. I guess there are different brands out there, as well as different stages of this disease, and I am curious if one brand is better than another. I know that probably depends on your doctor and your own situation. Also, last July when I was first diagnosed with CHF, my EF was 15. In March it was 24. I've seen several people on this board that have very low EFs and have gotten back in the 40s. How long did that take? I'm still experiencing back and chest pain during the day and take ibuprofen and Valium. I have no ankle fluid buildup but my legs hurt, especially in the morning.
     I'm sort of semi-retired, so I have plenty of time on my hands. I usually just watch CNBC and trade stocks on the Internet. I enjoy sending and receiving funny video clips, jokes, or just sharing views and tips about our illness or trying to give encouragement. If you want someone to talk to or just say Hi, I'm here. I've got plenty of funny stuff if you need to lighten your day; nothing vulgar or profane, just fun. I would love to hear from you so write if you have time. My best wishes and warmest regards, Robert (Bobby) Farish, age 47, EF 24. brasswood@greenvillenc.com


Jon's April 14 reply to Robert Farish's April 14, 1999 - Hi Robert, Your bio went up last night, along with some others. ACE inhibitors are different but the differences are still being debated. Often, your prescription plan determines what you get but certain ACE inhibitors have specific properties making them useful in specific patients, such as those with kidney failure (Monopril) or serious heart enlargment (Vasotec) or a nagging cough (ARBs like Cozaar, Avapro, Atacand or Diovan). Beta-blocker differences are being studied as we speak but it looks like many work well for us, although not all. See the Coreg page.
The statistics usually come from NIH and can be read here They were compiled from 1968 to 1993 and were published in 1994. So they are out of date but not drastically so. The AHA has statistics at www.americanheart.org/presenter.jhtml?identifier=1200026. I'm sure our "old timer CHFers" will respond with a resounding - Yes, you can go longer than that! <g> Jon.


Ben B's April 14 reply to Jo's April 12, 1999 - Hi, Are you sure the medicine they were talking about isn't Coreg (carvedilol)? The pharmaceutical companies are hyping it like a cure, which it isn't, although it is an important medication for those who can take it. On the positive side, almost every day I hear something new about heart failure somewhere. This shows that with the epidemic of heart failure, since more people survive heart attacks, there is really a lot of research on this disease, resulting in new medications, devices and transplant stuff including hopefully safer, better and cheaper anti-rejection drugs. A lot of recent news is on http://www.healthcentral.com/. For women, they seem to have a better (twice as good) natural protection against death from CHF than men. Also, they have a new stress test which is supposed to be close to an EP study in predicting fatal arrhythmia. Also, there is a new "defibrillator vest." On the anecdotal side, as far as longevity, I just learned that my friend's mom has had it close to 20 years and she has an EF of 20%. bdbrinkman@juno.com


Angie H, April 14, 1999 - Hi, I am new here and I am also new to CHF. I just found out in March that I have it. I have been really sick for about 2 weeks. I know very little about it and my doctor is not telling me a whole lot, either. I am a nurse assistant and I can barely take care of me these days, let alone someone else. I was taken out of work for 2 weeks to "rest" on Monday of this week. I am having problems with my workload due to shortness of breath and swelling in my feet and legs. If there is anything anyone can tell me about CHF to enlighten me, please do. My doctors seem to act like it is no big deal but from what I have read here so far, it is a big deal. Thanks. Angie. Gabat3@aol.com


Sara ?, April 14, 1999 - Hi everyone, I had a couple of bad days but my Lasix and Zestril was cut back since my BP was 78/50, and I am retaining fluid again. I see my cardiologist on Thursday so we will see. My internist said the sweats are from the fluids and is common with CHF. Does anyone know if the heart ever goes back to almost normal size or will it always stay dilated? I am anxious of this new health issue we are all dealing with but the support here and my faith keep me going. Sara. Sunny33904@aol.com


Heather S, April 15, 1999 - Hi, I'm sorry to be so long posting. School holidays, Girl Scouts and limited Net time are my only excuses. Martin, I'll have to pass you information about the Aussie medical system through the forum as your server simply hates me. In the meantime, I'm off to the big smoke for that week of dreaded tests this Sunday. Thank for all the survival suggestions. Dave said he will bring in all my mails.
     The nicest thing about having COPD is that when the doctors read about the hole in my heart, the pulmonary hypertension and the CHF, they forget to ask if I ever smoked! I have a home companion oxygen extractor named Cedric. I am attached to my friend 24 hours a day by the services of a cannula and a 30 foot length of plastic umbilical tubing named Beelzebub.
     Beelzebub, who is supposed to trail placidly behind me has developed a life of his own and, having a malevolent personality, appears determined to bring about my downfall. I swear that I will be a prime candidate for an ear transplant long before they finish evaluating me for a lung or heart/lung transplant. Beelzebub lurks. He lies in coils on the floor. He hides at the top of steps, he skulks around corners, he ties knots around the rosemary bush and the clothesline. He does it quite deliberately so that people will step on him, thus bringing me to an abrupt halt when the cannula gives a sharp downward yank to my ears. He shakes hands (er, coils) with the hall rug, he twists around door and drawer handles, he gets locked in the refrigerator, he ties up my husband's shoe and takes it for a walk, he attacks the dog. I'm sure I'll pass the stress tests next week because of the excess exercise gained backtracking to release myself from obstacles. The worst culprits are my family, and every time they step on my ears, they apologise. However after about the 100th time, I can still hear the words but they definitely appear somewhat lacking in conviction. Even the dog sits down on the tube. The only people who are properly horrified and apologetic are visitors, when told they're standing on my lifeline! It's hilarious to watch how they jump! Luckily, I'll leave Beelzebub behind, taking only my faithful cylinder and trolley, "Fred."
     Fred has grown by the addition of a "clack unit" since I last wrote of him. This is an attachment that causes a valve to open and clack, releasing oxygen only when one breathes in. This can extend the life of a portable O2 cylinder by 12 hours or more. If I stop breathing (as in nose blow or toilet truancy), "Clack" starts to beep distressfully and refuses to be consoled until I'm connected and breathing again. Toilet truancy is when one needs to scramble out of a vehicle in a hurry. My husband used to be one of those drivers who put their head and foot down and kept driving until point B was reached. He is learning a new mode of travel. It's called diuretics and involves memorising the position of every toilet available to the public between Melbourne and Morwell!
     Anyway, I'll be away for around a week and will surely have some disreputable inside stories of life in the hospital zone when I return. That's no reason for you to stop mailing me, mind you! God bless you all and keep your hearts up. Heather S. rock@net-tech.com.au


Maggie S, April 15, 1999 - Hi, I'm thrilled to have found this site, as I was diagnosed with DCM/CHF about 5-6 years ago, and have never known anyone else with the same problem. I am on Lanoxin, Coumadin, Prinivil, potassium, Maxide, and magnesium. I also take vitamins and CoQ10. I am now on the Coreg buildup but having a rough time with it; mostly stomach upsets, and just not feeling good. I hope I can make it to the top dose. My EF is 15-25. My hobby is showing my dogs and I want to keep on with this as long as possible. Thanks again for this site. Maggie S.


Bill D's April 15 reply to Jon's April 14, 1999 - Hi Jon, I thought I'd add some confusion to your Coreg plans. <g> Five months ago I found I was passing out. It would happen so quickly, I didn't remember being unconscious. All I knew that I felt kind of nauseous and dizzy. Rosie watched me and sure enough, I was passing out. We thought it might be a small stroke and called 911. They kept me in the hospital, ran tests, and nobody could find anything wrong. I suspected it was one of my meds. Without anybody's permission, I started cutting back on them, one after the other. In that Coreg was the most expensive, I started with that. I'd take 25mg in the morning but only 12.5mg at night. Guess what? The dizzy nauseous feelings went away. When I went back to taking 50mg, the feelings came back. I did that 3 times over a month and told the cardiologist about it. He agreed with the lower dose. I haven't had a problem since. My wallet likes the change too. <g> Bill. billdog@gate.net


Bill D's April 15 reply to Robert F's April 14, 1999 - Hey Robert, I have 3 neighbors with CHF. One has had it for 12 years. Another has had it for 18 years and Bill Altenberg, right across the street, is going on 27 years! They all plan on dying of something else. Bill. billdog@gate.net


Bill D's April 15 reply to Angie's April 14, 1999 - Hi Angie, Welcome to Jon's Place. We're sorry to have you aboard our leaky old boat. <g> The more we learn about CHF, the longer we can live with it. The best place to learn is right here. Click on Site Index at the top of this page. You might start your education by reading "The Manual." Some of us print it out for folks who don't understand. You'll be able to find answers to all of your questions including what you need to ask your doctors. CHF isn't a disease. It's a bunch of symptoms we all get when our heart's not working right. It can come from a heart attack or many other problems. In order to explain it, your cardiologist would have to sit down with you for a week! You know they're not going to do that! <g> The more you learn here at Jon's Place, the more impressed your doctors are going to be with you. Instead of expecting you to be satisfied that they are doing their best, they will take you into their decisions. Bill. billdog@gate.net


Chuck, April 15, 1999 - Hi, I'm 53 and had a "minor" stroke on 1/11/99. I'm taking 50mg Coreg, Coumadin, Vasotec and Lanoxin. With an enlarged heart diagnosed in December, I had a catheterization and renal tests and they were all clear. Two weeks later, I had the stroke. I haven't had any side effects since the medicine started and my heart is strong, about 42.5 on the scale. So my question is to anyone who knows, what are my chances of ever being "normal" again? How are other people coping in similar circumstances? cwsigerson@aol.com


Ruth ?, April 15, 1999 - Hi, I think this is what I have. I've been to the doctor off and on over the last few years for fluid retention, and am always told the same thing - lose weight; easier said than done. Since I last went to the doctor last summer, I've gained quite a bit of weight. I have a prescription for Demadex and also take thyroid medication (I was diagnosed with hypothyroid over 30 years ago), a prescription for stomach irritation, and Prozac. Quite a combination, huh? Anyway, the diuretic makes life so impossible (I'm a school teacher) that I only take it when the swelling gets bad and then I take it in the evening. I hate taking it because it makes me feel very anxious, depressed, even desperate. I've put off going to the doctor again because of the weight I've gained. I know I'll get a lecture again. Exercise is so hard to do. I have no energy and get so out of breath. I know lack of time isn't a good excuse but I use that one, too. I would like to hear from anyone who has had similar problems who has done something successful about them, or just someone to share miseries with. Not.yet@bewoner.dma.be


Steve S' April 15 reply to Milo's April 13, 1999 - Hi, No, I don't have any back problems. My calf muscle feels real tight, to where I'm limping after 10 minutes of walking. My right leg is ok. I'm going to start riding a bicycle again and see how that goes. I have seen my medical records and they said my EF was 5% on February 16th. I'm sure it had to improve, it can't go down, I hope. I'll find out Friday. Take care. stdimhcs@aol.com


Renee M's April 15 reply to Jack W's April 10, 1999 - Hi, I was really saddened to hear about your mother. I am keeping all of you in my prayers. I experienced a similar problem with my parents 3 years ago. Both became gravely ill at the same time and almost died. After being hospitalized off and on for 3 months, they came to live with me for another 3 months. That was the longest 6 months of my life. There was no choice for any of us at that time. I really could not handle things well. I have DCM and at that time my EF was about 30%. I prayed every night for a solution for us. I was lucky to get my parents into an assisted living facility. This has been a God send. They get the extra care they need and I can sleep at night. Since this is not a nursing home, your father could be there with your Mom, yet some of the burden of her care would be relieved for him. It might be a solution if there is this type of facility in your area. You also could rest easy knowing someone is always there since you can't be. I hope this helps. Renee. Auntonay@aol.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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