The paperwork never ends The Archives
January 16-31, 2001 Archive Index CHFpatients.com

Sheryl's 1-16 reply to Jean C's 1-13      coping with CHF daily
 
Jon 1-16      about Sunday's posts & more
 
Phyllis A's 1-16 reply to Edith's 1-12      chemo & radiation therapy-induced CHF, update
 
Andrea Meadows 1-16      intro, like the chat & more
 
Susan 1-16      mechanical valve noise - anyone else?
 
Linda Z's 1-16 reply to Phyllis A's 1-16      radiation causing CF & other problems
 
Tony's 1-16 reply to Jack's 12-28      taking BP many times a day
 
Brian's 1-16 reply to Susan's 1-16      mechanical heart valve noise
 
Brenda H 1-16      posting for another Barb
 
Steve 1-17      questions about disability process & hearing
 
Maggie S 1-17      Lasix side effects - what now?
 
Doris R's 1-17 reply to Claire's 1-8      sleeping with arms up
 
Walter K 1-17      seeking anyone who has had bad taste in mouth problem
 
Liz D 1-17      breathing problems scary - have CHF questions
 
Cristina L 1-17      seek people with ICDs or PVCs
 
Joy R 1-17      has anyone heard from Lee R?
 
Phyllis A's 1-17 reply to Linda Z's 1-16      thanks for info, good news also
 
Cristina L's 1-17 reply to Walter K's 1-17      bad breath experience
 
Josh T's 1-17 reply to Steve's 1-17      update, & Disability tips
 
Joe L's 1-17 reply to Liz D's 1-17      cough & congestion possibilities, heart enlargement
 
Vee 1-18      heart info sources & more
 
Jon's 1-18 reply to Vee's 1-18      heart info statistics & Jon doing stuff
 
Linda Z 1-18      cancer survivor list serv info
 
Thelma 1-18      does the heart benefit from weight loss?
 
Diane 1-18      improved EF - can I get pregnant? & more
 
Tracey C 1-18      cath versus echo questions
 
Jon's 1-18 reply to Tracey C's 1-18      cath versus echo
 
Walter K's 1-18 reply to Cristina L's 1-17      bad taste in mouth and hiatal problem
 
June's 1-19 reply to Andrea Meadows' 1-16      is long time between follow-ups normal?
 
Ginger 1-19      prayer request for Sarah F
 
Diane's 1-19 reply to Thelma's 1-18      losing weight and CHF
 
Autumn 1-19      hypercalcemia,CoQ10, muscle ache questions
 
Anna N's 1-19 reply to June's 1-19      interval between follow-ups
 
Jon's 1-19 reply to June's 1-19      interval between follow-ups
 
Anna N 1-19      fibromyalgia site has some SSD info
 
Liz D 1-20      thank you all, update
 
Andrea Meadows' 1-20 reply to June's 1-19      please see a CHF doc quickly
 
Andrea Meadows 1-20      update, cath, chat, EF & more
 
Barb L S 1-20      update
 
Ginger 1-20      update on Sarah, Vo2max test questions
 
Duane Clink 1-20      update, event monitor
 
Shannon's 1-20 reply to Jon's 1-18      EF readings from cath versus echo
 
Jon's 1-20 reply to Shannon's 1-20      EF readings from cath versus echo
 
Ruthie A 1-20      viruses, dehydration & potassium levels
 
Barb L S' 1-20 reply to Shannon's 1-20      my cath experiences & PVCs
 
Jon's 1-22 reply to Diane's 1-18      getting pregnant after having heart failure
 
Jon's 1-22 reply to Shannon's 1-20      post-PVC cath EF results
 
Ben B's 1-22 reply to Tracey C's 1-18      keep an eye on those doctors
 
Jon 1-22      sleep comes hard sometimes
 
Ben B 1-23      post-PVC EF, trip info
 
Tracey C's 1-23 reply to Ben B's 1-22      more info, thanks for your concern!
 
Shannon T's 1-23 reply to Jon's 1-22      echo results & techs, I like this site
 
Jons' 1-23 reply to Shannon T's 1-23      echo is a valuable test & more
 
Jeanette 1-23      liver biopsy questions
 
Jan S 1-23      how do I find Rx drug financial assistance?
 
Diane's 1-23 reply to Jon's 1-22      thanks for pregnancy info, EF question
 
Jon's 1-23 reply to Diane's 1-23      getting accurate answers, EF info
 
John 1-23      heart transplant recipient experience
 
Jon's 1-23 reply to John's 1-23      helping others facing heart transplant
 
Jon 1-23      the source of that CHF statistic
 
Barbara 1-23      a thank you to Jim
 
Jon 1-24      page updates
 
Connie M's 1-24 reply to Jan S' 1-23      help buying prescription meds
 
Joe L 1-24      seek others' difficult Coreg experiences & advice
 
Jon's 1-24 reply to Joe L's 1-24      I hope others also reply
 
John Len's 1-24 reply to Jan S' 1-23      getting help with prescription meds
 
Beth C's 1-24 reply to Joe L's 1-24      Coreg experience
 
Alene S 1-24      intro, ACE inhibitor side effect question
 
Andrea Meadows's 1-24 reply to Joe L's 1-24      metoprolol may be an option
 
Doris R's 1-24 reply to Joe L's 1-24      Coreg experience
 
Joy R 1-24      what makes a CHF doc a CHF doc?
 
Jon's 1-24 reply to Joy R's 1-24      CHF docs versus cardiologists
 
Lee 1-24      anyone else have these problems after such tests?
 
Mike J's 1-24 reply to Joe L's 1-24      Coreg experience, EFs
 
Rick M's 1-24 reply to Beth C's 1-24      Coreg experience
 
Shane's 1-24 reply to Joe L's 1-24      Coreg experience, EFs
 
Wayne S' 1-24 reply to Joe L's 1-24      Coreg experience, EFs
 
Jon P 1-25      seek info on alcohol related CHF
 
June 1-25      questions about activity from a new CHFer
 
Tom W's 1-25 reply to Joe L's 1-24      adjusting to Coreg
 
Jon 1-25      please check in on the caregivers' side also
 
Jill S' 1-25 reply to Barb L S' 1-20      why so many caths? just curious
 
Joe L 1-25      thanks to everyone
 
Ann C 1-26      digoxin levels question & more
 
Jon's 1-26 reply to Ann C's 1-26      digoxin levels, mental fuzziness, blood tests & more
 
Claire E 1-26      got my SSD! how long till I see check?
 
Diane 1-26      SSD review questions
 
Jon's 1-26 reply to Diane's 1-26      I hope others answer also
 
Jon Fitch 1-26      what a roller coaster ride!
 
Josh's 1-26 reply to Joe L's 1-25      am now reconsidering Coreg
 
Jon 1-26      page updates
 
Jon 1-27      page updates
 
Jill S 1-27      Coreg is not for everyone
 
Jon 1-27      more page updates
 
Nancy's 1-27 reply to Diane's 1-26      Disability review experience
 
Joy R 1-29      terminology questions & more
 
Jon's 1-29 reply to Joy R's 1-29      global hypokinesis, contractility & more
 
Sharon P's 1-29 reply to Ann's 1-26      digoxin level difficulties
 
Ann C's 1-30 reply to Jon's 1-26      update - watch your docs, folks!
 
Luc D 1-30      lost all addresses in my address book, please re-send
 
Brenda G 1-30      seek CHF-safe weight loss plans
 
Cristina L 1-30      update, thanks, Toprol versus Coreg questions
 
Jon's 1-30 reply to Cristina L's 1-30      Toprol versus Coreg
 
Ginger 1-30      asthma & exercise questions, and to Ruthie
 
Liz D 1-30      update, lung test & EKG terminology questions
 
Phyllis A 1-30      my SSD review experience
 
Terri 1-30      disability checks are stopping - what now?
 
Victoria 1-30      treatment questions, will I get any better?
 
Gus R's 1-30 reply to Diane's 1-26      Social Security Disability reviews
 
Lisa C 1-30      does heart muscle grow with work?
 
Jon's 1-30 reply to Lisa C's 1-30      heart enlargement
 
Sarah F 1-30      I'm back! chat Thursday & more
 
Anna N 1-31      has anyone taken amitriptylin for sleep?
 
Jon's 1-31 reply to Anna N's 1-31      amitriptylin and sleep
 
Donna Z 1-31      artificial heart news, had our CHF meeting
 
Jon's 1-31 reply to Victoria's 1-30      low BP & Coreg, recovering heart function
 
Jon's 1-31 reply to Ginger's 1-30      exercising and feeling bad
 
Jon 1-31      page updates
 
Andrea Meadows 1-31      having "weird spells"
 
Bill D's 1-31 reply to Anna N's 1-31      amitriptylin and sleep
 
Bob N's 1-31 reply to Ginger's 1-30      exercise regimens
 
Diane P 1-31      intro, history, seek diet advice
 
Ginger 1-31      can people with ICDs drive?
 
Sarah F's 1-31 reply to Anna N's 1-31      elavil and fibromyalgia


Sheryl's January 16 reply to Jean C's January 13, 2001 - Hi, I have probably seen this posted or written somewhere on this site, but the most important ritual a CHFer can follow is to get up each morning, urinate, then weigh yourself. If you are gaining weight, chances are you are retaining fluids. You should discuss with your doctor what to do about fluid retention. I take a Zaroxolyn with my Lasix when I have gained a certain number of pounds. Along with low salt intake, this gives me some control over my disease. sheryl_sh@hotmail.com


Jon, January 16, 2001 - Hi everyone, My web host says he cannot recover the posts and e-mails sent to me Sunday through Monday morning, which were lost due to technical difficulties slightly over my head. I am sincerely sorry but any posts that do not show up in this update will need to be re-sent. Unfortunately, I've lost messages twice in one week, due to my pooter having a seizure and then this server problem. Again, I apologize. Jon.


Phyllis A's January 16 reply to Edith's January 12, 2001 - Hello Edith, I had chemo and radiation that I believe induced CHF too. It took a long time but I am stable now. It took me changing my cardiologist and different meds. Hang in there.
     Also, I just wanted to say that I don't post much anymore because I am now diagnosed with fibromyalgia and don't feel good most days. Last week I had more blood drawn and am waiting forvthe results. The doc now suspects that I may have lupus, although I pray not. So I pray for you all even when I don't post. God bless, phylcasurv@yahoo.com


Andrea Meadow's January 16, 2001 - Hello, I posted on January 11 and am worried it was among the lost posts. I am 26 years old and have cardiomyopathy and CHF as well as mild mitral regurgitation. I have thanked God repeatedly after I found this site! I visited chat Thursday and met a few wonderful people. I am definitely coming back! Thank you Jon, for a fabulous site! lumina912001@yahoo.com


Susan, January 16, 2001 - Hello all, I am a 60 year old woman who had heart surgery over a year ago. I had both my aortic and mitral valves replaced with mechanical ones. I can still hear my valves "clicking" through-out the day and night and I seem to be hearing them more and more as if the clicking is getting "louder." Can anyone here relate? Please respond. Thanks, Susan. rhooper@icom.ca


Linda Z's January 16 reply to Phyllis A's January 16, 2001 - Hi Phyllis, I have CHF related to radiation treatments I had for HD way back in 1971 too. I run a list for long-term survivors of childhood and adolescent cancers, and can say your problems with fibromyalgia and lupus are familiar to us. I have neck, back, shoulder and intestinal pain that was misdiagnosed as fibromyalgia and is actually muscle and nerve atrophy from the rads. It took a very good pain specialist to get the correct diagnosis. Linda Zame. zame@earthlink.net
 
Jon's note: Linda, feel free to post info on joining your list


Tony's January 16 reply to Jack's December 28, 2000 - Hi Jack, Thanks for your reply. You said that you see no reason to live in a blood-pressure taking cocoon and that there is more to life. I fully agree. Everyone should live life to the fullest, regardless of the severity of their disability.
     However, I feel I am living my life to the fullest. I can't be very active due to the severity of my disease. I miss playing golf, going dancing, going on trips, going out more, etc,..., but I love each and every day! Taking my blood pressure with a digital BP gauge is easy and takes about a minute. I might seem a little foolish but I have found out a lot about my blood pressure, what makes it worse, and what improves it. I have read that only about 25% of people with high blood pressure have their's under control. It's probably less than 25%, in my opinion.
     I shouldn't have to stress the dangers of high blood pressure. It is a serious disease, which can have many major serious effects if not kept under control. For those of us with CHF along with other associated heart diseases, keeping our blood pressure under control is even more important, because our pumping system is already compromised. The knowledge I have gained by taking my blood pressure 10 times per day, I find very interesting and helpful. My efforts have made a significant improvement in my average blood pressure and related symptoms. I am very excited about this! It's like, when life kicks you in the teeth, kick back! <g>
     I posted my success story on Jon's web site so it might help others to control their blood pressure. I will continue taking my blood pressure up to 10 times a day until I am satisfied that I can no longer make improvements. During the other 23 hours and 45 minutes of the day, I promise you that I will live life to the fullest. t0nyt@yahoo.com
 
Jon's note: This keeps bouncing back to me dated December but I'm posting it just in case I missed it back then somehow


Brian's January 16 reply to Susan's January 16, 2001 - Hi, Try not to focus on this. I've had mine 18 years and you grow accustomed to the noise. Tile restrooms can echo and people think you're wearing a cheap watch! It gets sort of funny after awhile but it doesn't bother me anymore. I'm glad I can hear them and actual worry more when I can't. <g> The valves have made all the difference in how I feel physically. I wouldn't be around without them and wouldn't have enjoyed these extra years. bpgruber@yahoo.com


Brenda H, January 16, 2001 - Hi All, I read here every day but seldom post because my needs are always met by other people's questions and answers. This is the lazy way to stay informed - let other people do it. Barbara L Severino asked me to post for her because she is unable to right now. She wanted to say hi to everyone and to let you know she will be back to posting as soon as she is able. For the last couple of months she has been fighting a bad case of pneumonia and anemia, complete with extended hospital stays, transfusion, and a pic-line, and is now facing a hysterectomy. The hits just keep on coming, right? Keep on posting because I plan to keep on reading, okay? Brenda H. bishop048@webtv.net


Steve, January 17, 2001 - Hi, I'm 59 years old and had an MI when I was 33 and had bypass surgery at that time. I did well until about 5 years ago when I began having angina. In March of 1999 I was diagnosed with ischemic cardiomyopathy and CHF. My EF at that time was 15 but has gone back up to the fifties since than. In 2000 I had angioplasty and a stent in my left leg, a second bypass surgery, and my gallbladder was removed.
     I've applied for disability and have been turned down twice and am now waiting on a hearing. My cardiologist and surgeon recommended that I apply for disability, not because of the shape I'm in at the moment but because of the damage that will likely be caused by going back to work. I am working now after about a year and half of not working. I get through the day but am exhausted when I get home and I don't make enough to live on.
     Does anyone have any idea what I might expect when I go to the hearing? I have an attorney but don't know what to expect from him. If anyone has any ideas or encouragement, I'd like to hear from you. Thanks, Steve. liltevie@aol.com


Maggie S, January 17, 2001 - Hi Jon and everyone, I have had DCM and CHF since about l993. Until 2 years ago I was on Maxide but I started to have more fluid retention problems and my cardiologist switched me to Lasix. Also about this time, I was started on Coreg. I started out on 40mg Lasix and eventually had to be on 80mg, which seemed to work pretty well. All my blood tests have been normal until this last November when my creatinine was l.4. In December it was l.3. I decreased my Lasix dose to 60mg and had it rechecked just last week. I got the results today and it was l.6, with a BUN of 5l. This really concerns me since I'm afraid my kidneys are going to go bad. My physician wants me to try 40mg of Lasix and have a recheck in 6 weeks. I am watching my salt and fluid intake and hope I can handle the 40mg okay.
     My other meds are Lanoxin, 25mg Aldactone, premarin, potassium, Coumadin, magnesium, prinivil 40mg Lasix, and 25mg Coreg twice a day, plus vitamins. My EF is 20% and I have an ICD. My doctor does not feel that prinivil is the culprit because I have been on it since the beginning with no problems, but he thinks it is the Lasix. What can be done when you need Lasix but there are side effects? I would appreciate any thoughts on this. Thanks, Maggie S. marjac@pro-ns.net


Doris R's January 17 reply to Claire's January 8, 2001 - Hi Claire (reposting my Sunday post), I've been raising my arms over my head to assist my breathing for years. I sleep most often on my right side. When I am good at limiting my salt intake, I can sleep on my left side but I've been really lousy at that lately. Nevertheless, when I am reclining in a chair or on the sofa, without really thinking about it, my arms are going over my head. Until now, I haven't had anyone in my life with or without heart disease with whom I could relate; Validation at last. Kindness, joy, love and happiness to you all, Doris R. Roughgoing@aol.com


Walter K, January 17, 2001 - Hi All, About a month ago I posted that I had a terrible taste in my mouth that made eating anything pretty disagreeable. My CHF specialist attributed it to the ACE inhibitor I was on (Prinivil at 30mg AM and 20mg PM for a total of 50mg per day), switched me to Hyzaar and said it would take about a month for the taste to go away. It is now a month and the situation has improved but has not gone away completely. The doc said any ACE can do this in some people.
     Nobody has commented on my earlier post so I am wondering - has anyone else had this problem? If so, were you on an ACE inhibitor? What dose? I think 50mg per day was pretty high. Did the problem get resolved? How? How long did it take to go away if it did? Thanks for any info because I am not sure it is the ACE inhibitor doing it. This may be a trivial problem compared to others but its no fun either - low salt is bad enough! hknoth@magpage.com


Liz D, January 17, 2001 - Hi all, I'm new here and I really love the support each of you show one another. I have some questions I hope someone can help me out with. Is it possible to have a normal sized heart and still have CHF? Is it possible to have no fluid in the lungs and still have CHF? How important are PFT (pulmonary function tests) tests and stress tests in the diagnosis of CHF?
     My chest x-ray showed chronic obstructive change but no evidence of acute cardiopulmonary disease. My doctor has ordered a PFT and an EKG stress test. I have SOB every day and morning congestion and a dry cough. I first noticed my SOB when I was at rest watching TV or working on the computer. The congestion came later and happened every morning. It was alleviated when I walked around. My PCP says my lungs are clear and my chest x-ray normal. I have gotten weaker with more fatigue, and my resting pulse is now averaging in the 90s using a store-bought BP kit. Standing up it shoots up over 110. I hope I don't sound like a hypochondriac but I was in the hospital yesterday with dehydration brought on by the flu. I was at my PCP's office feeling weak when they had to call the ambulance. I've never had a dehydration problem before. I hadn't even been vomiting at all.
     I'm better today, but very, very weak. I know something is wrong and I feel intuitively that it's my heart. I guess I don't want to end up in the emergency room like a lot of you did and if I'm not aggressive with this I might. Are there any more tests I should insist on? Sometimes I think it's all in my head and then when I can't breathe right I get worried. My breathing is restrictive not obstructive so at least I know that much. Sorry for this being so long but yesterday scared me. Any responses would be appreciated. Thanks, Liz D. MaryAstor@aol.com


Cristina L, January 17, 2001 - Hi, I just got home from my cardiologist, who wants me to see a specialist about possibly getting a defibrillator. I have numerous PVCs - we just did another holter monitor. I recently had open heart surgery to repair my mitral valve. Does anyone out there have a defibrillator? PVCs? I would like to communicate with you. rjlisa@bellatlantic.net


Joy R, January 17, 2001 - Hi, Has anyone heard from Lee Roush? It would be nice to know if she is alright. wapalaremi@home.com


Phyllis A's January 17 reply to Linda Z's January 16, 2001 - Hello Linda, Thanks for e-mailing me with all your info on fibromyalgia. Praise the Lord, I got my results back today and I do not have lupus. I believe that all my medical problems are side effects from the chemo and radiation during breast cancer treatment. I have CHF, asthma, and now am diagnosed with fibromyalgia, but I know God doesn't put on you more than you can bear. God bless you and all for your prayers. phylcasurv@yahoo.com


Cristina L's January 17 reply to Walter K's January 17, 2001 - Hi Walter, I did have some problems with bad breath but I also had white spots in the back of my throat. I was tested for strep throat but the specialist did a test and found it to be reflux. Do you have gastro problems that could be causing the bad taste in your mouth? Prevacid has helped my reflux, which in turn took care of my bad breath. rjlisa@bellatlantic.net


Josh T's January 17 reply to Steve's January 17, 2001 - Hi, It is important for your attorney to hire a vocational evaluator to testify that you cannot be employed at any job because of your health and that the stresses of employment will diminish your health further. Also, he should have a psychologist testify about the mental trauma associated with your illness and its debilitating effect. Social Security administrative law judges need to build a record that you provide so they can cover all points.
     Incidentally gang, I just returned from Houston's Texas Heart Institute, where I was thoroughly tested by a team of specialists. I was very impressed. I go back in February. Their opinion is "that I'm not in bad shape considering the shape I'm in." I've got to knock off 20 lbs. My EF is 28% so maybe it'll go up if I lose weight. The results of the tests they did won't be available for a couple of days, so I'm waiting! Good cheer to all and always remember, He is always with you. jatilton@huntnet.net


Joe L's January 17 reply to Liz D's January 17, 2001 - Hi Liz, That dry cough and congestion could be caused by CHF and or pulmonary hypertension. The dry cough can result from increased cardiac pressures, which in turn cause increased pressure in blood vessels inside the lungs. This increased pressure causes the air sacs to retain extra fluid thus irritating the air sacs and causing a cough and interference with oxygen exchange, hence your SOB. Also, your heart does not have to be enlarged. Your heart may still be within normal parameters but may be enlarging very slowly, which would only be detected by a series of echos over a period of time. I suggest asking for an echocardiogram and have them check your EF and the pulmonary artery pressure. Be persistent. Good luck. JTLucido@aol.com
 
Jon's note: Pulmonary pressures will require a cath


Vee, January 18, 2001 - Hi everyone, There's an audiotape called "Treatment of Heart Failure: Past, Present, Future" from a recent conference. It's tape #150, about 45 minutes long, and costs about $12 plus shipping and handling. Beware though because it's a presentation by a doc to a group of docs, not to patients or the general public, so it's total medspeak and some of it it faily technical. If that doesn't deter you too much, it can provide a quick and convenient overview, especially of CHF meds. In case anyone's interested, you can call (800) 776-5454 or e-mail them at info@CMEunlimited.org.
     Hey Jon, here's an idea for your suggestion box. Have you ever considered doing and marketing something like this yourself, I mean educational information that's user-friendly, as well as current and intelligent? It could even be a series of tapes, everything from the basics of managing your CHF (like what's in The Manual) to more technical stuff on a variety of subjects from research and treatments to epidemiology - for us stats lovers! <g> This might also help a lot of sick people out there who don't have access to computers. I know almost everyone's into using videos for health ed, but there are advantages to audio tapes. They're cheap and easy to produce, convenient to use, and they can be updated and stay current a lot more easily. Hey, we could even listen to them on the way to the doctor's office and you could coach us on some of those real killer questions to ask (well, maybe killer isn't such a good choice of words <g> ).
     While we're waiting for Jon to do this, does anyone know any good videotapes or found any really useful health ed materials on CHF? I'd like to make some recommendations to my HMO. And Jon, I'm glad I piqued your interest in the CHF data. Thank you for all the info you dug up! More on that later. maize2001@hotmail.com


Jon's January 18 reply to Vee's January 18, 2001 - Hi, Well, the odds of me doing any tapes are slim and none. ;-) I'd get a job if I had that much energy! I've had so many people tell me to write a book and I'll say to you the same I say to them all: My book, tapes, info, whatever is all free and all on my site right now, as is. I just don't have the energy or desire to market it in any other fashion.
     I have tons of statistics on my hard drive but only one or two mentions make it onto my pages because quite honestly, CHF stats are never accurate; for many reasons, some of which I explained recently. They just are not reliable so I don't quote them very often. I suggest the National Center For Health Statistics to anyone who wants to dig up lots of numbers. The CDC and HCFA are the other 2 primary sources of heart disease numbers. The AHA has their own set and many subsets are available on Medscape somewhere. Have fun, Jon.


Linda Z, January 18, 2001 - Hi all, Jon suggested that I give the Url to join my discussion list for long term survivors of cancer. Here it is: http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=lt-survivors&A=1. zame@earthlink.net


Thelma, January 18, 2001 - Hi, Here is a silly question. I recently switched cardiologists and am now going to a CHF specialist. We sat down and had a long talk about my case, and I specifically asked him about ways that I can help my heart. When I asked about being overweight and if losing weight would help, he stated no. Mind you, I'm about 50 pounds overweight. He said it wouldn't help my heart to last longer or improve function, just make me feel a bit better. I'm just curious what other cardiologists have told patients. I would think it would be beneficial to the heart; am I wrong here? Tcull@prodigy.net


Diane, January 18, 2001 - Hi Guys, I am age 28 and have had DCM for almost 4 years. My EF for the last year has been stable at about 48-50%, up from 12% at my diagnosis. Can anyone tell me where I can find information on women with DCM who went on to have children? My cardiologist advises me not to have any children but because I have no children now, I am feeling torn. In some ways I think I am crazy to even consider this as an option. However, I want to know the statistics. Also, once your EF has improved significantly as mine has, is it still likely I can have a relapse? Thank you, Diane. Style928@aol.com


Tracey C, January 18, 2001 - Hi Everyone, A quick question about cath versus echo. I had a cath recently which showed a higher EF than I normally get with echo. My doctor said to disregard that number because the heart is "over-stimulated" during cath. I've always read here that cath is more accurate. Have you heard about the stimulation factor before? Thanks, yracey C. nuttytandt@aol.com


Jon's January 18 reply to Tracey C's January 18, 2001 - Hi Tracey, Cath is more accurate than echo. Pressures are measured directly from the blood vessels with cath, while they are estimated using mathematical formulas using numbers from readings generated by sound waves "echoing" off the heart and blood during echocardiogram.
     I have never heard of an "over-stimulation" effect during cath and wonder how this could be when so many cath patients are so drugged down during the procedure. Here is a chart comparing tests:

  Systolic
function
Diastolic
function
Ventricular
wall info
Valve
disease
Coronary
artery
disease
Weaknesses
Echo Extensive info Some info Limited info Limited info Some info
with exercise
Non-invasive
MUGA Extensive info Some info Limited info Limited info Some info
with exercise
 
Sestamibi
first pass imaging
Limited info No info Limited info No info Some info Limited availability
cath Extensive info Extensive info Limited info Extensive info Extensive info Invasive
Ultra-fast CT Extensive info Some info Extensive info Some info Some info Radiation involved
Limited availability
Cardiac MRI Some info Some info Extensive info Some info Some info  

Patients with COPD or who are very obese will not get accurate results with echo. Jon.


Walter K's January 18 reply to Cristina L's January 17, 2001 - Hi Cristina, How did you get a reply to my 1/17 post up on the same day? You must live next door to Jon. Anyway, I do have a hiatal hernia which does cause reflux at times and trouble getting food down. I briefly considered if that could be the cause but dismissed it because I have had the hiatal problem for well over 20 years but the taste problem only developed last year. However I will ask my docs about it.
     I got an e-mail from another woman in response to my post. She also had a bad taste problem, read my post of a month ago, spoke to her doc as a result and was switched from Zestril (an ACE inhibitor) to Diovan. I don't know what the latter is but her taste problem has improved. Who knew? hknoth@magpage.com
 
Jon's note: Diovan is Valsartan, an ARB (ACE Receptor Blocker) also called ACE II Inhibitors or ACE Antagonists


June's January 19 reply to Andrea Meadows' January 16, 2001 - Hi, I was just diagnosed with non-ischemic DCM in October of 2000 after heart failure brought me to the emergency department. I had never heard of this condition and don't know who or what to believe. I called my specialist to have a follow-up on treatment and he said he would see me in 2 years. Is this normal, not to be followed closely? Thanks. I am 46 years old with no history of heart or lung disease. lapoune1@yahoo.com


Ginger, January 19, 2001 - Hi all, Please say a prayer for Sarah F. She has had a heart attack. As far as I know she is doing okay but prayers will help her get through this. :-) I thank you all in advance! Hugs and prayers, Ginger. angelgin@bellsouth.net


Diane's January 19 reply to Thelma's January 18, 2001 - Hi Thelma, My doctor told me that losing weight is very beneficial for the heart. It makes logical sense to me that the more you weigh, the more the heart has to work to pump. Diane. Style928@aol.com


Autumn, January 19, 2001 - Hi, About 3 weeks ago I started on Lipitor for lowering cholesterol. It has caused me to have really painful leg and hip muscles, the ones I use for exercise. The doctor said that may be from dehydration or because Lipitor depletes CoQ10. So I will be starting on CoQ10, either now or in a couple of weeks after a small surgery is done. I was told not to take anything with a blood thinning effect for 7 to 10 days before surgery such as vitamin E. They do not know if CoQ10 has any blood thinning effect. Can any of you tell me if it does?
     Also, I have been diagnosed with mild hypercalcemia. I know this is having some effect on my kidneys as well as digestive affects, and I am hoping this is just from my dehydration problem. My doctor asked me several times if my bones hurt but he doesn't want to discuss this with me till he finds out what is causing it. He says he doesn't want to worry me. Well, that worries me. Do any of you know anything about this or have you experienced this? Thanks, Autumn. AmberDawn-Blzn@webtv.net


Anna N's January 19 reply to June's January 19, 2001 - Hi June, That sounds like a long time to me. My history, age, and diagnosis are all similar to yours and when I was first diagnosed my cardiologist saw me every 3 weeks until I was stabilized and now sees me every 6 months. I don't know if this is typical or not. Hopefully others will give some feedback too, so you'll know. snowyegret7@excite.com


Jon's January 19 reply to June's January 19, 2001 - Hi June, My CHF doc saw me every 3 months for several years, then every 6 months, and now sees me once a year - 6 years after diagnosis. Jon.


Anna N, January 19, 2001 - Hi, I was just diagnosed with fibromyalgia as well as DCM so I was checking some fibromyalgia web sites. I came across one that might provide benefit for all of us who are trying to get SSD or might need to in the future. A petition at http://www.chronicallyill.com asks for changes in the way the chronically ill are treated. Much of it has to do with availability of pain treatment but it also asks for SSD to be given on the recommendation of a doctor and then the burden of proof to put on SSA to show that the person should not get SSD. You might want to check out the site. snowyegret7@excite.com


Liz D, January 20, 2001 - Hi all, I just posted the other day in a panic. I'd like to say thanks to Joe L for his reply to my questions. I'm much more coherent today and want to comment that I'm in the process of being diagnosed with CHF and COPD. To be able to read this site and these posts before diagnosis has greatly benefited me and I feel much more prepared to accept the diagnosis when it comes. I also feel like I'm prepared to ask the right questions and get the right testing done as I go through this long process.
     All of you have been there and done that, and seem so focused on the positive. Thank you for helping me to understand that I will still be able to maintain a good quality of life and that knowledge truly is power. Liz D. MaryAstor@aol.com


Andrea Meadows' January 20 reply to June's January 19, 2001 - Hi June, I already you an e-mail on this. You should definitely see a cardiologist as soon as possible. Please post again and tell us how it goes. Jon also has CHF specialists links to help find doctors in most areas. lumina912001@yahoo.com


Andrea Meadows, January 20, 2001 - Hi, I was taken by ambulance from my doctor's office to the ER on Tuesday, the 16th. I had a cath. On the 18th, I finally got some good news. My EF is 35-40% and there is no blockage! I still have a long way to go and the cardiologist cautioned me not to get my hopes up too much but now I have at least a little hope! Special thanks to Tom T, who chatted with me January 11. My doctor thought it was a grand idea to use my arm instead of the standard groin insertion! lumina912001@yahoo.com


Barb L S, January 20, 2001 - Hi everyone, I want to thank Brenda very much for posting for me. I'm slowly attempting to get back to where I was before all this happened and so far I have e-mailed just a few people. A very, very belated merry Christmas and happy New Year to everyone. I miss everyone here and coming here and receiving e-mail, so I've decided to explain that I had gone in to Robert Wood Johnson in Hamilton, New Jersey on Christmas Day and was there past New Year's Day. I won't get all teary-eyed and go into how lonely it was because I know everyone here understands that and it goes without saying.
     I will tell you all though, to please watch out for a silent sickness that can change your life and your family's just as much as heart failure and that is pneumonia. In late November I was discharged from Mt. Sinai because my x-ray was clear. We had no clue as why I was sleeping almost around the clock. After all, heart failure causes tiredness and sleeping. At least in my case, it does. After a couple of weeks of this I got sick to my stomach but still avoided the hospital. By the third week, after I missed Christmas Eve and was barely a participant at my son's third birthday party, did I let someone take me.
     I didn't want to miss the holidays or time with my family. I even called my doc in New York and expressed my fears. He changed my antibiotic and I still missed Ali's birthday, Christmas Day, and New Year's Day anyway. Last week we had another Christmas with just family and everyone gave me my gifts again. I couldn't remember who gave me what. Our tree is still up and will stay that way for awhile. I noticed that Brenda touched on other things so I won't go into that.
     My message in this post is that I miss my support system very much and please take care of yourselves. Let your doctor be the judge and not your heart (not the physical one). I didn't, and I almost didn't come home. I still have pneumonia and anemia, and that's why it's taken so long. Again, please take care and I hope your holidays were good ones. God bless, Barb. Alikeys@hotmail.com


Ginger, January 20, 2001 - Hi, Sarah is doing well. It was minor, thank goodness. :-) I have to go for a Vo2 max test. I read Jon's page on it an it tells a lot but if ayone here as had one I would like to hear how it was for them. So if anyone is up to it I would appreciate hearing about it. Thanks and hugs, Ginger. angelgin@bellsouth.net


Duane Clink, January 20, 2001 - Hi, I wanted to let you know I am getting some progress. I changed heart doctors and the new one cut my amiodarone in half to 200mg a day; The resulting lower heart beat is much better. He also sent me home with a (King of hearts) event monitor. It holds 5 events that you push a button to record. It records for 45 seconds before (via constant monitoring and 45 seconds of memory) and 15 seconds after you push the button. After you record 5 events you can call in and the rhythm is sent to the office where a tape is made. The recorder is ready for another 5 events then. I will wear it for a month and then go back. They should get a lot of good information from it. djclink@kdsi.net


Shannon's January 20 reply to Jon's January 18, 2001 - Hello, I have never posted before but read quite regularly. I am a heart cath and echo tech. My first thought on Tracey's cath EF being higher than echo and the doctor saying "overstimulated" was the possibility that the LVgram was filmed while she was having PVCs. Catheters can cause PVCs and no matter what the doctor does or where he positions the catheter, the PVCs continue. Sedation meds do not make a difference on that. This can give an inaccurate EF%, quite frequently higher than the results obtained by echo. I certainly am not disagreeing with your statement, just thinking of another possibility for her doctor's statement. Sthomp1826@aol.com


Jon's January 20 reply to Shannon's January 20, 2001 - Hi Shannon, If no one ever disagreed with me, I'd never learn anything! <g> Would the cath report include note of such PVCs? If so, would an MD who is not an interventional operator understand this? I'm trying to figure out why Tracey's doc is giving her the information he is giving. Any insight you can give us into this would be appreciated! This is the first I have ever heard of higher EF readings from cath due to anything so any further info is welcome.
     PS. The chart was just copied from the Mayo Clinic textbook of Clinical Cardiology for practicing cardiologists. I can't take credit for it. Jon.


Ruthie A, January 20, 2001 - Hi to everyone, I just went through an experience I hope I never have again. I had the flu and bronchitis, and was just beginning to get my strength back when I came down with a violent intestinal virus. The vomiting and the runs were so bad that I got dehydrated and hubby had to take me to the ER. By the time they checked me out, my potassium levels had plummeted to dangerously low levels and I was admitted in critical condition.
     I was released this afternoon (Saturday) but have to take mega-doses of K-Dur for at least 2 more weeks. Then I will have another blood test to see if my levels are coming up. Please heed my warning here: with diuretics, we are constantly juggling with potassium levels; with a virus and dehydration, we are at great risk for hypokalemia. If you have diabetes, it is even easier to get dehydrated so you have to watch yourself even more carefully. Do not think you can handle dehydration by yourself. At the very least, check with your doctor. If you are unsure, make that trip to ER.
     Our hearts are too fragile to play around with this. I thank God for a husband who was wise enough to get help for me even though I thought I didn't need it. If he had listened to me, I would be dead now. Instead, I am just very weak and tired. So what else is new? It sure beats pushing up daisies! Ruthie A. rlaba51@yahoo.com


Barb L S' January 20 reply to Shannon's January 20, 2001 - Hi Shannon, I just wanted to say that I agree with you. I always get PVC's during caths on top of my usual day to day PVCs. To this day they still scare me. I guess that's natural. However, every time I have a cath done (at least 4 times per year), I get PVCs. Never have any of my CHF specialists referred to it as "overstimulation." It has been explained that it's just an expected side effect, so now I pretty much expect them. The only other test done to figure out my EF has been a MUGA.
     All my caths except the very first one have been Swan-Ganz caths done through the neck. They never give me meds for that. The only time I had a different type of cath was when I had one through my groin and they had administered meds then and I really don't remember it. I'm only responding because I have a lot of caths done and still remember the first one in my neck with the PVCs. It's scary. Take care, Barb. Alikeys@hotmail.com


Jon's January 22 reply to Diane's January 18, 2001 - Hi Diane, You might want to check out Dr. Marc Silver's book "Success With Heart Failure" since it has some information about pregnancy. I asked some CHF specialists about CHFers getting pregnant. They all started by saying that they didn't have enough information about you to even make a decent guess as to the degree of risk involved, but they all agree it is risky. Here are some of their thoughts:
     The risk of pregnancy has 2 aspects. Number one is the risk of strain on the heart dangerously reducing heart function. I was reminded that pregnant women must stop taking ACE inhibitors during at least the first 2 trimesters. The second area of risk is viral. Apparently, pregnant women are more susceptible to viruses during the end of their pregancy.
     According to my sources, if you ask most CHF doctors about getting pregnant, they will just say no - emphatically. There is a possibility that a woman who has had heart failure can carry a child to term despite the dangers, but I was told that it should only be considered if the woman meets at least the following 3 requirements:

  1. She has achieved normal left ventricle function and has sustained that improvement over time
  2. She is physically fit, as proven by a normal CPX test (peak Vo2)
  3. She has a good team of an Ob/Gyn and CHF specialist

So yes, it is possible, but it is definitely high-risk. I don't mean to be gruesome but please keep in mind that if you get pregnant and your heart does give out, your child may die before it has a chance to be born; lots of things to consider. Jon.


Jon's January 22 reply to Shannon's January 20, 2001 - Hi Shannon and Tracey, I e-mailed my CHF doc when the topic of cath versus echo EF results came up and got his answer yesterday. Because he's Director of Cardiac Transplantation here, he has a lot of experience with diagnostics. Here's what he had to say: (I paraphrased some of it to make the reading easier so any mistakes are mine)
     "Post-PVC stimulation of EF has been recognized since the early days of heart cath. It was used prior to the days of exercise echo testing to see if the heart had any potential to improve function. If the EF did not improve much after PVCs, it was a sign that the heart was maxed out and probably would not improve after bypass surgery.
     Cardiologists understand that the EF on a post-PVC beat is generally higher than during normal rhythm. Very few cardiologists would calculate or report an EF like this (post-PVC) without special considerations. I would never give a post-PVC EF reading to a patient in a manner that implied this higher EF had much significance."
     Anyway Tracey, I guess you'll have to question your doc to be sure, but I think he called it right. For what it's worth. :-) And Shannon, thank you for posting. I had never heard of this! Jon.


Ben B's January 22 reply to Tracey C's January 18, 2001 - Hi Tracey, What are they doing to you after only 5 months of this condition? It seems like they are testing you every other week. Aren't these the same doctors who were going to take you off all meds a couple of weeks ago? Tell these "doctors" to quit using you as a guinea pig and let you relax. These guys could drive you into an illness obsession. bdbrinkman@juno.com


Jon, January 22, 2001 - Hey everyone, If posts go up in a somewhat erratic fashion, I apologize in advance. My sleep patterns are shot again. The old-timers are used to me but for you newer readers, please be patient. Jon.


Ben B, January 23, 2001 - Hi, I am reading with interest this information about post-PVC measurement of EF. In my case, rarely a minute goes by without me having at least a couple of PVCs so I doubt it would make much difference whether my measurmeent came from echo or cath. They could just as likely be stimulated by PVCs in either case. However, in people who don't normally have PVCs, I guess it could make a big difference. I can't imagine doctors don't take this into account, and try to report realistic numbers.
     I just got back from a 10 day trip to Spain with absoutely no problems on the plane or walking up and down fairly steep hills. My last EF measured around 30%. So don't everyone give up on trying to do things, please. I will be a broken record on this as long as I'm able. The airline food may have been a bit high in sodium but they also serve fruit. You can pick and choose and unless you are trying to keep below 500mg like Don G, I don't think there is much problem. I calculated my daily sodium at 1500mg. Remember, they don't give giant portions. The only problem I did encounter was keeping on a good schedule with my meds when the time changed. I'll figure this out next time. It was blissful not thinking about my heart for 10 days. bdbrinkman@juno.com


Tracey C's January 23 reply to Ben B's January 22, 2001 - Hi Ben, The cath was recently done to check for PPH. My right ventricle is enlarging and I have a history of Phen-Fen use so they wanted to be sure. They don't buy the familial connection to DCM even though my mom has it. Other than a normal echo, I've had nothing else done at this point. They are still discussing taking me off meds in March but as I said, I'm a bit leery of that after reading what's happened to people who've stopped. We'll see. Thanks for your concern though, and take care! Tracey. nuttytandt@aol.com


Shannon's January 23 reply to Jon's January 22, 2001 - Hi Jon, Just today I did an echo on a lady with newly diagnosed DCM and I got an EF of 25%. Her heart cath showed an EF of 31%. I know these are fairly close numbers but it just shows that the numbers will probably be different. There are 11 techs that work in my cath lab. If we all drew the same LV we would probably get 11 different EF numbers. It is frustrating for the patients, I know.
     Byu the way, I love your site and passed it along to my patient. Take care, Shannon. Sthomp1826@aol.com


Jon's January 23 reply to Shannon's January 23, 2001 - Thanks! :-) My CHF doc believes there is a possibility of deviation of +/- 8% with echo due to the huge number of factors at play; not just with tech experience and skill but with equipment, software, surroundings, and the patients themselves. Echo is probably the single most useful diagnostic test available for CHFers, especially since it's widely available in the USA, is covered by most health insurers, and is neither inpatient nor invasive. Jon.


Jeanette, January 23, 2001 - Hello to Jon and all, I have just found out that I will need to have a biopsy done on my liver. I was wondering if anyone has had this done and what they do. I am anxious about this and not really looking forward to it.
     My LFTs have been abnormally high and all the blood tests they have run came up negative, so they think this is the next step. If anyone has any information on this, it would be helpful. I did manage to look up some stuff on WebMD but it doesn't ease my mind any. Thanks for the help and take care, Jeanette. jeanette841@yahoo.com


Jan S, January 23, 2001 - Hi, I will have been on SSD (disability) two years at the end of April. On May 1, I start my Medicare. I'm concerned about prescription costs sinces I take 12 a day. We noticed that no one is listed in our book for medigap "J." I heard something about catastrophic illness and something about doctors writing to drug companies to get assistance with prescriptions. Any information would be helpful, Jan S. geschuppja@aol.com


Diane's January 23 reply to Jon's January 22, 2001 - Hi Jon, Thank you so much for checking into the pregnancy issue for me. I will look for Dr. Silver's book today. My EF for the last year has been 48-50%. Would you call that normal? Thank you for everything and your time, Diane. Style928@aol.com


Jon's January 23 reply to Diane's January 22, 2001 - Hi Diane, No problem. The catch is that it usually takes a few days to get this kind of response since I have to write my doctor "advisors" and then await their response, and they're all very busy people. All 3 are in charge of either a CHF clinic or a heart transplant program. Usually an EF of 55% or higher is considered normal. See this page. I'd suggest a sit-down face to face talk with your CHF specialist about this to start with. He knows your history and progress to date so he can address things in detail. Jon.


John, January 23, 2001 - Hi, I had a heart transplant in December of 1999. If anyone is on the waiting list and needs to talk, don't hesitate to drop me a note. If you've had a transplant, please say hello in an e-mail! John. gaetano3@prodigy.net


Jon's January 23 reply to John's January 23, 2001 - Hi John, For you and all other heart transplant recipients, if you want to share your story with others, one way is to have it placed on this page. Just send me your story and I'll get it done. Jon.


Jon, January 23, 2001 - Hi everyone, Back when the subject of CHF statistics came up, I wrote the NHLBI, asking them to reveal the source of their www.nhlbi.nih.gov/health/public/heart/other/card_myo.htm info of 50,000 cardiomyopathy cases statistic. I have received a message in reply. They did not answer directly. In fact, they only told me to look at The American Heart Association site and CDC site, where I had already been, looking for such stats. So it seems that they do not know where they got that number themselves; At least, they aren't telling me! <g> Jon.


Barbara, January 23, 2001 - Hi, A wonderful person had the perception to know how much I needed the support of this site. Thank you, Jim. chefbj2000@yahoo.com


Jon, January 24, 2001 - Hi everyone, The following pages on my site have been updated:

  1. Heartbytes
  2. CHF Surgery
  3. New CHF Meds
  4. Transplant Update
  5. Desktop Wallpapers

Jon.


Connie M's January 24 reply to Jan S' January 23, 2001 - Hi Jan, In regard to your recent post: In Texas, if you are in the San Antonio area, there is a wonderful program for people like us. My husband is currently taking 11 different meds. His disability check was completely used for meds. Then a friend we met in the hospital told us about Akers Unlimited. It deals directly with the pharmacutical companies and your doctors. They may have info available for you for other areas. Talk to Alice. The phone number is (210) 829-0648. Alice is very helpful and will get back to you if you leave a message. It was a great help for us to go from $700 a month to $35 since we have no prescription card for my husband. God bless all of you, Connie M. milweav@airmail.net


Joe L, January 24, 2001 - Hi everyone, I just wanted to see if anyone has had a very hard time with Coreg. I was started on it about 1½ months ago with a dose of 3.125mg twice daily. About 2 weeks ago the dose was increased to 6.25mg twice daily. I noticed an immediate increase in fluid buildup with the increased dose and I felt awful. I gained 8 pounds during the first 3 days on the new dose. My Lasix dose was then doubled to get rid of the fluid, which made me feel even worse. I could not function at work and had to take some sick days.
     My CHF doc decided to lower my dose back to the original starting point for 2 weeks and I will try to increase the dose again after the 2 weeks. I am very apprehensive about increasing the dose again because I have never felt so bad in my life. The doc says I need to take Coreg and will have to deal with the side effects because they should not last more than a month or two. I do not know if I can handle a month or two in that state. I am considering stopping Coreg and asking for a calcium channel blocker since I have predominately diastolic dysfunction. Does anyone have any suggestions or thoughts? Thanks. JTLucido@aol.com


Jon's January 24 reply to Joe L's January 24, 2001 - Hi Joe, I hope others will reply with their personal experiences, since I am only going to address one small part of your post. Coreg is taken for 2 reasons: to relieve CHF (symptoms) and to make you live longer despite your CHF. Calcium channel blockers may relieve symptoms but they are more than likely going to reduce your life span rather than lengthen it as Coreg does. Just food for thought. Jon.


John Len's January 24 reply to Jan S' January 23, 2001 - Hi Jan, My doctor fills out the forms and sends them in to the individual manufacturer of the particular drug I need. They will either accept it or reject it depending on your income. I own my own house but have low income so I qualify. I get my insulins (3 different kinds), Norvasc and Zocor through this program. I have a form from Social Services that I could have filled out and they would have taken care of it, John. a_lenny6@hotmail.com
 
Jon's note: Also, see my Links page for Rx help


Beth C's January 24 reply to Joe L's January 24, 2001 - Hi, My husband was on Coreg for 2 weeks. See the loved ones' posts on 1/6 and 1/17. He had terrible headaches, shortness of breath and extreme fatigue. However, I noticed during that time, that for the first time in months his breathing while sleeping was very quiet and regular. He was taken off Coreg and is now on Cozaar. We still don't have a prognosis or know as much as we would like to about the cause of his cardiomyopathy or the course it will take, but that was his experience. I had hoped he would tolerate it but the headaches were debilitating. I hope this helps, and good luck. bill331606@aol.com


Alene S, January 24, 2001 - Hi, I just want to introduce myself. This website has been an enormous help to me. Thank you so much Jon, for maintaining it and thank you to all the great people responding too. I was diagnosed with cardiomyopathy and heart failure in August, and spent 10 days in the hospital. I am doing really well now. I'm back to work and I feel better than I have felt in at least 5 years.
     I have a question. Originally I was on Zestril and I had a photophobia side effect, which means I would practically be blind in sunlight or flourescent lights or even regular lights. My creatine level went up so I was taken off Zestril. I have been hearing how important being on an ACE inhibitor is. So my doctors and I have agreed to try Vasotec. I am so hoping that I don't end up with an eye problem again. Has anyone else had this experience? AleneS@aol.com


Andrea Meadows' January 24 reply to January 24, 2001 - Hi Joe, You may try to get your doctor to try metoprolol. I love it. It is also a beta-blocker. The only side effect I have is a dry cough, but I had it anyway! Give it a shot. One brand name is Lopressor. Good luck! lumina912001@yahoo.com


Doris R's January 24 reply to January 24, 2001 - Yes Joe, I had trouble when I was first prescribed Coreg. It took just over 3 or 4 months for me to adjust. I was diagnosed in August of 1998, a candidate for heart transplant. Until then, I was never sick a day in my life, as the saying goes. As a matter of fact, I only went to my family doctor because my feet were swollen for 3 days. By the time I saw the doctor, my swelling had gone down. I only kept the appointment then because I didn't want to cancel at the last minute. When I told her I couldn't breathe laying down, trying to elevate my swollen feet her feet hit the floor running; EKGs, blood test, x-rays, referrals. I began to regret keeping the appointment! I also credit her for saving my life now.
     In addition to Coreg, I was started on everything else, including K-Dur, Vasotec, Coumadin, nitroglycerin pills, furosemide, spironolactone (Aldactone), and nitro sublingual spray for emergencies. I had an EF of 10%.
     They had to tiptoe me to the maximum dose of Coreg. It made me violently ill taken twice daily with food and I don't mean crackers or toast either. I had to take it with meals that would gag a mule! I mistakenly didn't eat enough once. It caused chest pains I was sure were a fatal heart attack. The pains were severe and rhythmic, every few minutes or so, just like labor pains, only in my chest. I wanted to quit the medication but my heart doc begged me not to. He would always tell me that if I could just stand it a little while longer, it would be most beneficial. I would hang in there awhile longer, dreading my next increase. It was explained to me that Coreg could improve my exsitence and in some cases reverse CHF and in some cases cause recovery. I only know of 2 cases where that is claimed but I am still hopeful. On Coreg, my EF went from 10% to 30% after 6 months of the maximum dose for me.
     For now, I am no longer considered a candidate for transplant. I still look forward to recovery. Marvelous advances are being made in genetic science every day. Who knows, a cure for people like us may just be on the horizon. That is my hope, that is my prayer. Hang in there if you can, friend. If God gave us his Son, will He not also kindly give us all other things? (Romans 8:32) Kindness, joy, love and happiness to you all, Doris R. Roughgoing@aol.com


Joy R, January 24, 2001 - Hi Jon, I have a question. What is the difference between a cardiologist and a CHF specialist? wapalaremi@home.com


Jon's January 24 reply to Joy R's January 24, 2001 - Hi Joy, A CHF specialist is a cardiologist, but one who treats mostly people with heart failure. This bit from my CHF specialists page explains some about doctors and cardiologists:

     An MD has had 4 years of pre-medical education at college, 4 years of medical school; and after receiving an MD degree, at least 3 years of specialty training under supervision, called a residency. A subspecialist is a doctor who has completed training in a general medical specialty and then takes even more training in a more specific sub-area of that specialty. Example: Cardiology is a subspecialty of internal medicine.
     Specialty boards certify doctors as having met certain standards. There are 24 specialty boards recognized by the American Board of Medical Specialties (ABMS) and the American Medical Association (AMA). Remember, a subspecialist first must be trained and certified as a specialist. In order to be certified as a medical specialist by one of these recognized boards, a doctor must:

So a CHF doc is first an MD, then an internist, then a cardiologist. Cardiologists often further subspecialize, as in electrophysiology (the heart's electrical system), interventional cardiology (doing caths, angioplasties, etc,...), pediatric cardiology (treating children), cardiac surgery, and so on.
     CHF specialists are cardiologists who "subspecialize" in treating people with heart failure. They are thus very familiar with that area and are much better suited to caring for us. I hope somewhere in this babbling, I answered your question. If not, let me know and I'll try again. <g> You can read some American College of Cardiology info about cardiologists here. Jon.


Lee, January 24, 2001 - Hi, I was supposed to have surgery 3 weeks ago. My cardiologist had me take a test called Myocardial Gated Spect w/EF. The doctor gave me thallium, then injected me with cardiolite to put my heart under stress while they did an EKG and took some sort of radiological pictures. My EF had dropped from 33% at the beginning of the year to 14%. The stress was awful on my heart but they continued the testing in spite of my protests. I had severe angina and arrhythmias for 10 days before my doctor took me off Tambocor and put me on a mild dose of metoprolol.
     I continue to have low BP at 85/60 with a pulse of 48 bpm. My arrhythmias became worse and today my heart stopped several times for 4 seconds during a 5 minute period. The doctor told me to stop the metoprolol and get back on Tambocor and to report for an event recorder tomorrow morning, which I will wear for 3 weeks. Has anybody else had problems like this after such testing and does it go away? Thanks for any input, Lee. lebutch@cfl.rr.com


Mike J's January 24 reply to Joe L's January 24, 2001 - Hi, I just wanted to get my 2¢ worth in on Coreg. I take Norvasc every morning and also Cozaar twice a day. This is in addition to Lasix and potassium. I have questioned both my internist and my cardiologist, and they insist I take Norvasc along with the Cozaar. About a month ago I started Coreg at 3.125mg once per day at bedtime. The doctor only wants me to take that amount and when I asked him if I could drop any of the other meds he said no.
     He wants me to have more energy but when I started it, I felt rather tired and short of breath for a couple of weeks. I now feel very well and have a lot more energy than I thought I would. My blood pressure as of last Friday was 130/76 and my pulse was 80. I can only assume that the Coreg takes time to start working. I am a 53 year old male but when I first started Coreg I did not feel well at all. I do now, so it must be working.
     My EF is between 30-40% by echo and 35-45% by cath. I have spoken to Jon about EFs and we agree that it is a measurement that can change just like blood pressure. Hang in there everybody and may God bless you all. Have a great day! Mike J. joye13@gateway.net


Rick M's January 24 reply to Beth C's January 24, 2001 - Hi Beth, I think I can speak for a lot of the old timers here at Jon's Place when it comes to Coreg, and being slowly brought up to an effective dose. We've all been through it and we have mostly forgotten it. Some of the early timers here were on the original Coreg trial panel and regaled us with what to expect, so everyone gets treated fairly. <g> For my part, I wouldn't be without it. I urge all to grin and bear it, because it does get better. rearadml@iu.nets


Shane's January 24 reply to Joe L's January 24, 2001 - Hi Joe, I just wanted you to know that I was recently taking 50mg of Coreg twice a day. I started feeling very bad for a couple of months. My doc just reduced my dose to 25mg twice a day and I have been feeling quite a bit better since. However, my EF was improved from 10% to almost 45% in about a year. I guess what I'm saying is that we have to take the good with the bad, or vice versa. I don't know exactly why it makes us feel bad but I think a lot of us know it does. Good luck and hang in there. oldyeller@ccrtc.com


Wayne S' January 24 reply to Joe L's January 24, 2001 - Hi Joe, Coreg has helped me. At first it made me very ill. It took about 3 months for my body to get used to it. If it is possible for you to stick it out, then please do. The benefits of Coreg are just too good for us. God bless everyone. Wayne S, DCM and CHF. frances@blkbox.com


Jon, January 25, 2001 - Hi, Where can I get more information on alcohol caused/related CHF? jon.parker@att.net
 
Jon's note: Typing "alcoholic cardiomyopathy" into www.google.com brings up a lot of info


June, January 25, 2001 - Hi guys, It's a pleasure to look through this site and know I am not alone. Thank you Jon, for starting a wonderful thing. Since I'm new at DCM, what should I expect in terms of daily activities? Have some of you returned to your "normal" lives during or after treatment. Will I always be under house arrest? This is referring to the little activity I've been permitted to do. When is doing too much, too much? I used to be super-active, walking 5 miles a day, and doing cross country skiing, climbing, working full-time; always on the go. To fall on my couch for the last 3 months has been very different. Will I return to those days? Thanks for listening, June. lapoune1@yahoo.com


Tom W's January 25 reply to Joe L's January 24, 2001 - Hi Joe, I agree with those who encourage you to stick with Coreg! With each and every increase, I felt terrible. Everyone's body adjusts to medications at a different rate. Mine took about 2 weeks with each increase. Others have taken months. The only suggestions I have are to:

  1. take it with your meals
  2. try to separate it from your taking of other blood pressure lowering medications like ACE inhibitors and diuretics
  3. stick with it. The results are worth the pain and suffering

tew4515@hotmail.com


Jon, January 25, 2001 - Hi everyone, Please remember to check in on the caregivers' heart forum if possible. A post over there today really needs a reply from people who have had bypass surgery or who have gotten CHF from chemo or radiation treatment. Thanks!
     Also, for those who like pictures of space, I added a space wallpaper last night. Jon.


Jill S' January 25 reply to Barb L S' January 20, 2001 - Hi Barb, Just out of curiosity, why do you have caths so often? I've only had one in 3 years. Jilschrod@cs.com


Joe L, January 25, 2001 - Hi, I want to thank everyone for their replies and suggestions to my Coreg dilemma. I guess my doc knows what he is talking about when he says I need to be on this medicine. I will stick with Coreg and just deal with the side effects, knowing they will eventually pass. Thanks again everyone and may God bless you all! JTLucido@aol.com


Ann C, January 26, 2001 - Hello All, I have not posted in it seems like forever. I wanted to share an experience I had the other day. I am back from the hospital, having been poisioned by too much digoxin. My "dig" levels were off and my pulse dropped to a staggering 20-30 bpm. My BP went way down to 60/30. I was told that I needed these levels tested periodically. I did not know this and have never had them tested. The only blood test I have ever had is for Coumadin levels. Now they have taken me off all of my meds and are starting from scratch; Very scary.
     Does anyone have any information on digoxin levels and toxicity? Plus, I am having now trouble with my brain and picking out the words that are necessary to talk. Does anyone know anything about cardiomyopathy and this symptom since I have been back from the hospital? Any comments or advice would be appreciated. Thanks in advance, Ann C. Shomeekatz@aol.coms


Jon's January 26 reply to Ann C's January 26, 2001 - Hi Ann, All CHFers should have blood work done every 3 months, like clockwork. This should include a urine sample for extra checks on kidney function. Cholesterol-lowering drugs, diuretics, ACE inhibitors and digoxin all pose serious risk if your internal levels of them get too far off-target.
      The usual target dig (digoxin) level is 0.5 - 1.5 ng/ml. I must confess I have no idea where I got that info. I have certain info stored in text files on my hard drive. If I was satisfied with its accuracy when I stored it, I just quote it from then on. That's a bad habit that I no longer follow - I now also store the source, but I have so much info "on file" it gets hard to manage at times. Dig level testing requires that you take your digoxin tablet a specific number of hours before blood is drawn, so get it straight with the lab or doctor before making the arrangements. My dig levels were always checked seperately from all other blood work.
     I'm just guessing on this but if you were taken off all your meds, you are bound to be fuzzy between the ears. Your body runs on chemical messengers. A lot of those messengers are hormones. Our heart meds artificially regulate those hormones. If they have been regulated to a certain extent for a long time and then the governor (meds) is removed, your system is bound to be out of whack. I do not understand why you would be taken off all your meds due to hig dig levels. This seems absurd and possibly dangerous. Maybe I misunderstood. Jon.


Claire E, January 26, 2001 - Hi, Greetings and peace to all, I am so happy and relieved because I got my letter today from the judge stating they ruled fully in my favour when I had my Disability hearing back in December! What a long drawn-out ordeal. I have been trying for nearly 2 years! I guess that's pretty common.The last 5½ weeks waiting for the judge's decision have been the worst. Well, I know it's not going to change my cardiac status but it sure does ease my mind! Things have been pretty tough around here since I had to stop working. I'm sure you all know what I mean.
     Can anyone give me a vague idea as to how much time elapses between hearing how they ruled and the first check? I'm not unrealistic. I know we are looking at months but how many, I wonder? Not that I'm greedy but if I wash these poor old tennis shoes one more time they will probably fall apart! <lol> Take care, Claire E. weezey62@aol.com


Diane, January 26, 2001 - Hi Guys, Does anyone know how often Social Security reviews your disability claim? I have been on disability now for about 3 years and thought it should be coming up soon. Also, is it as involved as the first time you apply? Thanks, Diane. Style928@aol.com


Jon's January 26 reply to Diane's January 26, 2001 - Hi Diane, I have no idea how involved a review is since I haven't had one yet, so maybe others will tell us their experiences with this. Here is the review schedule from SSA's web pages:

Jon.


Jon Fitch, January 26, 2001 - Hi, I just discovered that I have CHF on 12/11/2000. I have been up and down so much in the past weeks, I can't even explain it. jonp_25504@yahoo.com


Josh's January 26 reply to Joe L's January 25, 2001 - Hi, Thanks for the discussion on Coreg. Four years ago, my cardiologist put me on it and I thought I was going to die! So he put me on Norvasc and Vasotec along with Lasix. I've done alright on these but my EF has not improved despite exercising, primo nutritional supplements and eating right. I go back to Houston on the 14th for a Vo2 test. Last visit he mentioned Coreg, and I told him my other doc had tried it but I guess I was too wimpy. After reading all the comments to your note Joe, I think I'll give it another go. Good luck to all, and God bless! jatilton@huntnet.net


Jon, January 26, 2001 - Hi everyone, the following pages on my site have been updated:

  1. CHF Surgery
  2. Desktop Wallpapers
  3. Nutrient Stew - Minerals
  4. Nutrient Stew
  5. New CHF Meds

Jon.


Jon, January 27, 2001 - Hi everyone, the following pages on my site have been updated:

  1. ICDs & More

Jon.


Jill S, January 27, 2001 - Hi, I had nothing but problems with Coreg: weight gain (fat, not water), sleep problems, depression, profound and unrelenting fatigue, mental fuzziness, blood pressure drops and a feeling that I was going to pass out. I tried several times over the course of 2 years to get my dose up to 6.25mg twice a day and was never able to get there. I couldn't live with the effects of the drug and now take only 3.25mg at bedtime. It is not for everyone. You do your best and that's all you can do. I've lost 10 pounds since my dose was decreased, without really trying. Hopefully I can get rid of the other 15 I gained since starting the drug. Jilschrod@cs.com


Jon, January 27, 2001 - Hi everyone, I managed to update some more pages this evening:

  1. Heartbytes
  2. Heartbytes II
  3. Medspeak
  4. Site Index
  5. <Vo2max Test Page
  6. CHF FAQ

I also added a page on how to find stuff at Jon's Place here. Jon.


Nancy's January 27 reply to Diane's January 26, 2001 - Hi, I was just reviewed last fall (2000) and had only received my Disability from Social Security in 1998. It was just some paperwork answering questions about my health. They determined to leave my alone for now. I don't know how I could work enough to live without disability payments. I am so tired most of the time, Nancy. tourbus@cheerful.com


Joy R, January 29, 2001 - Hi everyone, Jon, I have another question. Since I have had DCM which led to CHF, my MUGA shows global hypokinesis, along with all the other effects of having heart disease. What exactly is hypokinesis? All I can find is decreased contractile function. Is that what causes a low EF or does everyone else have this too? I just wondered since I always read the posts and this hasn't come up. Any thoughts on this? It's a thought from losing my stomach function. My stomach quit contrating, therefore I couldn't eat and got down to a bag of bones, and all this and the heart started at the same time. It was a question at one time whether it was a neurological problem causing this but they kept thinking with the heart it was a virus.
     I also lost contraction in my small bowel and colon, so I was in a dehydrated state most of the time and was put on IV hyperalimentation, which is IV nutrition for people not able to eat normally. I had a illeostomy last year and a gastromy to keep me from being so nauseated and having so much pain. Both of those procedures worked and with the IV nutrition, I now have gained up to 110 lbs and am in much better health. I saw a nuerologist and at that time I decided not to have any testing done since he thought that my problem had no cure and all they did was treat symptoms, which is what we do anyway.
     I am still on IV dobutamine to boost my heart. Now Jon, I know you don't believe in using IV intoropes but I take 2 days off a week where my heart doesn't get the dobutamine and I can hardly function, just lay and struggle to breath until my next IV. Then like a miracle I start to feel better.
     I didn't mean this to be so long. It all comes down to what is this hypokinesis and do all of us with heart disease have it? I am looking forward to finding out about this. I just love this site and the ability to ask questions and relate to others. It has kept my sanity and faith throughout this entire illness. My friend told me yesterday that I was like an angel to her, that I never complain and always have such a good spirit. What she doesn't know is that this site keeps me going and if I have complaints I can come here and not bore my family and friends with all the disease talk. Thank you, Joy. wapalaremi@home.com


Jon's January 29 reply to Joy R's January 29, 2001 - Hi Joy, I often tell people that I plan on using IV inotropes when my own heart failure gets really, really bad - if I don't die first. Why did you think I had something against them?
     Decreased heart contractility is reduced ability to beat; weakened pumping strength. Global hypokinesis means your heart as a whole moves less than it should, or moves slower than it should. I hope that helps. If not, ask again and I'll try to explain better. :-) Not everyone with CHF has global hypokinesis, though (I do). Just as CHF has many causes, it also has many "faces" and can show different heart motion problems depending on the individual.
     For everyone, I had a heart failure day today and will catch up posts tomorrow. I did put up a cute puppy desktop walllpaper though. Jon.


Sharon P's January 29 reply to Ann's January 26, 2001 - Hi, I had problems with my digoxin levels too. As it turned out, it was caused by a medication - amiodarone - which I had been taking for a couple of months. I suffered with severe nausea, fatigue and headaches. As soon as I was taken off digoxin/Lanoxin, my symptoms disappeared. I have heard that this can be a common occurence between the 2 drugs. Sharon. sparker103@home.com


Ann C's January 30 reply to Jon's January 26, 2001 - Hi, Yes and no to the answer of them taking me off the meds. I am still on half doses of 3 of the 9 drugs. My digoxin level was 1.9 in the hospital and my BUN was 78. I heard those were high levels. I was doing okay with just a General Practioner here in my city, with my specialist 3 hours away, but now I am getting a cardiologist for me at my home town as well. This is getting really strange. I found out that my heart doc was not even notified that I was in the hospital. I was so certain that my GP would be getting orders from him, and that was not so. I am working on this immediately and will find out why my meds were removed, and find out from my specialist the correct dose and what I am to take now.
     My GP was the one who took me off my meds. This is a good example folks, of not keeping track that each doctor knows what the other is doing: A real lesson. I will keep you updated on the results. Thanks! Ann. Shomeekatz@aol.com


Luc D, January 30, 2001 - Dear friends, It's Luc here again from Belgium. Should it be possible for the people here who know me to send me their e-mail adresses again? I had to format my hard drive and all my e-mail adresses are gone. I wish you all the best life can give you. Your Belgian friend Luc. luc.deseins@planetinternet.be


Brenda G, January 30, 2001 - Hi everyone, I am thinking it is time to lose some weight since it has been steadily climbing over the last few years. I have been looking at a Weight Watchers diet but it tells you to drink 6 glasses of water per day on top of normal drinks. I am wondering what this may do to my heart since I am taking furosemide to get rid of fluid. I would appreciate any thoughts or any other diet plans that may help CHFers. brenda.george@zfree.co.nz


Cristina L, January 30, 2001 - Hi, I had a second opinion by a CHF specialist at Columbia Presbyterian who told me that I do not need a defibrillator. He told me that I do not have ventricular tachycardia and that I have only had 2 runs of 3 beats. They believe it's caused by inflammation from my recent open heart surgery. He also indicated that I'm doing so well with other symptoms that he would not recommend any changes at all. Rather, they will monitor me more closely. Thank you to all of you who responded to my concerns about ICDs and your experiences. I'll keep you posted.
     As far as Coreg goes, I also had a difficult time adjusting to Coreg. The maximum level I got to was 18.75mg twice a day. Any more than that and my BP dropped and my arms hurt. I've been on Toprol XL for almost a year now and I'm at 150mg twice a day. I feel great, with no tiredness, no fatigue, and no weight gain. My big question for Jon is, "Does Toprol XL measure up to the benefits of Coreg? Are they considered to be equal?" I have scheduled my next Vo2max test for April. I guess that will give me more of an answer as well. While on Coreg, my Vo2max tests got better each year. Cristina L. rjlisa@bellatlantic.net


Jon's January 30 reply to Cristina L's January 30, 2001 - Hi Cristina, I don't know for certain whether Toprol is equivalent to Coreg for CHF. There are certainly plenty of studies - many ongoing - to find out, though. Some can be seen on my Coreg page here, here and here. So far, I can say that it seems to be of great benefit to CHFers who do not tolerate Coreg. Jon.


Ginger, January 30, 2001 - Hi all, It's been awhile since I posted, I know. Dig levels are something that must be watched. Even with them watching my step-dad's blood level every 3 months, he still ended up with his dig levels too high an it put him in the ER. They took him off digoxon for 3 days and then put him right back on it but they did not keep him off or stop any of his other meds.
     He is in the hospital now with CHF and they now say on top of that he has devoloped asthma. Does someone just get asthma like that out of nowhere? He also has to go for an EP study Wednesday. I am exhausted most of the time lately. I know part of it is due to the EF drop and the hospital runs but I never seem to feel good anymore. I have not gone yet for my <Vo2max test and in a way I don't think I have the energy for it anyhow. Still, they will do it in the next 2 weeks anyhow.
     Ruthie, everytime I feel like a pity party, especially when my back starts up and the pain gets me down I read what you have gone through and I wonder where you get the strength to go through it all! You're an amazing lady. My back doctor says surgery and my cardiologist says no. Fun, huh? I know you have been through the back stuff too, Ruthie.
     My question now is: After 2 bouts with the flu and bronchitis, here I am 5 weeks later wondering how to start back exercising. I forget how I started it in the first place. If anyone is just starting out to exercise to get their strength back, I am open to all suggestions. I asked my doctor about it and he just said, "Walk." Well, okay, but how long, how far, how fast, and do I walk even if I am tired? If I go by how tired I am, I won't do it at all. <lol> Seriously, I have to get back to it because the care of my stepdad when he gets home will be up to me and I feel like I haven't been doing a good job of that lately, and guilt is something I don't like feeling. Thanks for being here and stay well y'all. We need each other. Hugs and prayers, Ginger. angelgin@bellsouth.net


Liz D, January 30, 2001 - Hi all, I posted a couple of weeks back about some upcoming tests I was taking for my SOB and fatigue - the EKG stress test and pulmonary function test. Well, I've had both and the pulmonary test showed mild chronic obstructive disease of unknown origin. Asthma and bronchitis were ruled out, but emphysema is a suspect. My lung volumes were normal except for the FRC, which showed reduced recoil pressure. What is that? I'm at 66% lung capacity with reduced diffusion capacity and pulmonary blood volume. What is that? You'd think my own doctor could explain all this today but she couldn't so she's sending me to a pulmonologist, but he has no openings for 6 weeks, so I'm stuck. If anyone understands any of this I would appreciate an explanation.
     The EKG stress test wasn't complete because I became SOB and fatigued at stage 2. The tech seemed to think I wimped out. Her evaluation was - and this was not looked at by a cardiologist - negative exercise TT for ST segment depression, however ventricular couplet in recovery of unclear significance; Clinical correlation suggested. What is a ventricular couplet? My doctor didn't think it was important and I am not familiar with heart rhythms, but none of this sounds very reassuring to me except the word mild. Are there any other cardiac tests I should push for, or should I just concentrate on the lung problem? Any helpful advice would be appreciated. Liz D. MaryAstor@aol.com


Phyllis A, January 30, 2001 - Hello Jon and Friends, I'm replying about SSD reviews. I have been on Disability for 3 years and each year they send me paperwork to see if my condition has changed. The last 2 years I had to go to their assigned docs for a physical check up. The last time I went their doc said to me, "Why are they sending you to me when you have all these illnesses: asthma, cardiomyopathy and congestive heart failure?" I have fibromyalgia to add to the list since December 15, 2000, all after treatment for breast cancer with chemo and radiation. phylcasurv@yahoo.com


Terri, January 30, 2001 - Hi, It's happened. My Disability insurer (UNUM) is stopping the checks. The docs say I must be better with a 40% EF. Never mind the fatigue, continued fluid retention and shortness of breath; 40% means I am cured. If I'm not feeling able to work, maybe I just need to push myself harder. Sorry, was my bitterness showing through just then?
     My previous employer has made it clear that I shouldn't reapply unless I know I can handle the 12-hour days and constant stress that go with the job. They are unwilling to make any concessions. The folks at Equal Employment Opportunity are looking into that situation, but I don't hold out much hope.
     What employer is going to put up with my restrictions on travel and physical activity, let alone tolerate regular absences for doctor's appointments and the occasional bad day? Even if such an employer existed, what about the regular stuff that wears me out even without a job? Just running kids to and from school, keeping the house in half-way decent order (hubby does the heavy cleaning on weekends), and getting the exercise that I believe is keeping me alive is almost more than I can handle. Frankly, just staying awake for 12 hours straight is a struggle some days.
     What are the odds of convincing a doc to reverse his decision to release a patient for work? Mine seemed to think that I was asking him to commit fraud. If I go to another doc at this point, won't the insurer just dismiss it as an attempt to "shop" for a someone more cooperative? I just need 10 more years on the planet to see my children safely grown. Work until you drop is not an approach designed to meet that outcome. Any advice out there? tkohrman@dockpoint.net


Victoria, January 30, 2001 - Hi, I was diagnosed with cardiomyopathy due to left ventricular dysfuncton in 1991 and lost almost 50% of my heart function. I had ischemic heart damage. It runs in my family. They know that now since my sister almost died very abruptly when her left ventricle malfunctioned and she went into CHF and lost over 75% of her heart function 2 years ago. I have another sister also who appears to have a problem in the same area here. I am on 6.25mg Coreg twice daily, 80/12.5 Diovan HCT, and 0.25mg Lanoxin daily. Three years ago I had another attack of CHF but managed to get by with it.
     When I went in for my echo again the doctor said the echo results showed the same results with an EF of about 32%, and that in reality I wouldn't get any better since it had not changed since 1991. They said they will watch me and try and make sure I don't get any worse. If there is no steady improvement or something of an improvement after all this time, is this probably true in my case? I can accept it but why no improvement? Even though I have low blood pressure, should I let the doc go ahead like he wanted and raise my Coreg dose? God bless, Victoria. vef45@aol.com


Gus R's January 30 reply to Diane's January 26, 2001 - Hi Diane, If there is any rhyme or reason in how often Social Security reviews disability claims, it escapes me. I can tell you how it worked with me. The original "award" was sent to me in December of 1993 and like you, I expected to be reviewed in about 3 years. In August of 1999 I received a "Disability Update Report" to fill out and return. It was much shorter than the original application - just 6 items to fill out and a space for remarks. The Report "period" was from August of 1997 to the present. The questions were:

  1. Have you worked?
  2. Has your doc said you could work?
  3. Have you attended any school or work training?
  4. Are you better, the same, or worse?
  5. Have you gone to the doctor?
  6. Have you been hospitalized?

Three months after I mailed the report back, I received a letter saying they were not going to review my disability case at that time. I have no idea how standard any of that was. I have 2 suggestions I would like to pass along: Keep records of each time you go to a doctor or clinic, and do likewise concerning hospitalization and surgery. I had very good records on my health care because "working" at entering them in the computer and sorting them was one of the ways I tried to keep my sanity when I first became disabled. I filled out the 3 spaces on their report form and attached a sheet to continue the list. I included everything and the length of the list surprised me.
     My second suggestion isn't really mine; I got it from Jon. He has some very good Social Security Disability information and advice here. I particularly like his advice to get a doctor's letter saying, "John Doe cannot work at any job for any reason and will not get better." Since the form I was filling out didn't require anything from my docs, I didn't get a signed statement to attach but did write it in the remarks section, attributing it to the doc who had used it previously on a similar form. Best wishes, Gus R. gus13@advancenet.net


Lisa C, January 30, 2001 - Hello all, I have an EF of 30%, and force myself to the gym every day. I worked myself up to 25 minutes on the treadmill at 3.5 mph. I wonder, since my heart is enlarged due to CHF caused by an aortic valve leak, will working out every day cause my heart to get even larger? Afterall the heart is a muscle. If anyone knows, please let me know. God bless, Lisa. coleman5@ivillage.com


Jon's January 30 reply to Lisa C's January 30, 2001 - Hi Lisa, Unlike skeletal muscle, cardiac muscle does not increase cell size when worked to exhaustion. So in the sense of getting larger arms, etc,..., no, your heart won't enlarge. In world-class athletes, you might see some heart cell enlargement but it is from extraordinary working-to-exhaustion periods over time, the likes of which few people in the world will ever do.
     However, if you work out so much that your heart is unable to accommodate your body's need for blood supply, it may enlarge overall rather than cell by cell, trying to squeeze harder. That's the kind of "bad" enlargement that cardiomyopathy causes. It is actually the heart muscle stretching, not heart muscle cells getting larger one by one, like with biceps and lats.
     Also, unlike skeletal muscle, you cannot grow new heart muscle cells. Once you're an adult, you have all the heart muscle cells you will ever have (naturally). Jon.


Sarah F, January 30, 2001 - Hello to everyone, And thanks to each of you who remembered me in your prayers. I am recovering nicely from my heart attack, which my doc said was a "tiny" one. He is titrating my Coreg again up to 18.75mg from 12.5mg twice a day so I expect that some of the fatigue I am feeling is normal, whatever normal is. I want to extend an invitation to anyone interested to come to an extra chat on Thursday, March 1 at 7:00PM EST in the CHF chat room. I will try to be there every week and if people keep coming like they have been, I will ask Jon to put it on the schedule. I also will try to post a reminder so that it jogs our rusty memories. <g> See you on Thursday, Sarah. sfuhrmeyer@neo.rr.com


Anna N, January 31, 2001 - Hi, Is there anyone who is taking or has taken amitriptylin? It has just been prescribed for me to help with sleep problems associated with fibromyalgia. But I read a little about it and many of the possible side effects have to do with blood pressure and heart problems. I'd rather sleep poorly than take a chance at making more heart problems for myself. I'd appreciate any input on this drug. snowyegret7@excite.com


Jon's January 31 reply to Anna N's January 31, 2001 - Hi Anna, I have taken it for sleep problems. I have to state a sort of disclaimer though. After my unsuccessful experience with this drug and others, I decided that doctors are really, really sloppy about using certain types of drugs like anti-depressants for disorders that have nothing to do with that drug class at all! Anti-depressants like the one you mention should not be prescribed for sleep or pain problems, in my opinion. Drugs that are designed to deal with sleep problems should be used for sleep and drugs designed to deal with pain should be used for pain.
     Back to your question, I have years of chronic sleep problems under my belt - ever since getting CHF - and I have never found a single drug to be a long-term solution. Ambien is an excellent short-term solution but should not be taken for over 2-3 weeks. Some people do well with Restoril but again, it really is not meant as a long-term solution. Amitriptylin (Elavil) made me lethargic and mentally dull and did not ever get my sleep problems under control; Just my experience and sorry for the lecture, but this is one of my pet peeves. ;-) Jon.


Donna Z, January 31, 2001 - Hi, There is a new article in this morning's Philadelphia Inquirer that might interest some of you. It's about the next generation of artificial heart. AbioCor is what it is called and if you are interested you can read about it by going to www.philly.com. I also had the pleasure of meeting Walter K and his lovely wife last night at our first Congestive Heart Failure group meeting. Walter is on this support group and we have e-mailed each other but it was so nice to meet him and Hedy. I think the meeting went well and hope we have continued success. Donna. dzak@worldnet.att.net


Jon's January 31 reply to Victoria's January 30, 2001 - Hi Victoria, Usually if a person does not recover near-normal heart function in the first 6-12 months after treatment begins, they will never recover full heart function. However, they can still recover lots of lost heart function, even if they never get "well." So don't think you won't get any better. You may not, but then again you might. No one - and I mean no one - knows the future.
     About low BP and Coreg, that's a very individual call. My own CHF doc says he prefers to lower the ACE inhibitor in such a patient, then raise the Coreg dose. When the patient is adjusted to a higher Coreg dose, he then raises their ACE inhibitor slowly back to proper dose. This is one option. However, some people never tolerate Coreg due to low BP. The only way to know for sure is try it and see. Just take it easy and be patient during the whole process. Hope it helps, Jon.


Jon's January 31 reply to Ginger's January 30, 2001 - Hi Ginger, This is a tough one. For me personally, there are a couple of "rules" that work regarding exercise. First, I have to remember not to get carried away on those days I think I can do a little more than usual. It's not a good idea for me. It always catches up with me over time and saps me, causing me to stop exercising for awhile.
     Second, I have to very carefully decide on any given "bad day" just how bad I really am.

  1. Do I feel bad but my symptoms are not actually any worse? Maybe I'm really tired but I am breathing okay? If so, I exercise
  2. Are my symptoms a bit worse but I am not retaining fluid? Am I am slightly more short of breath and am really tired but have no swelling? I exercise
  3. Are my symptoms a bit worse today and I am retaining some water? I do not exercise that day
  4. If I have 2 or 3 days in a row where my symptoms flare up whether or not I show any swelling, I take a few days off exercise. I am doing so this week. However, mark it on a calendar so you do not forget how long it's been. You must get back to it as soon as you can, not as soon as you want to. <g>

It's all very individual. I hope other reply with some tips that work just for them. You never know when a quirky little thing that helps you will help someone else too. Jon.


Jon, January 31, 2001 - Hi everyone, The following pages on my site have been updated:

  1. Desktop Wallpapers
  2. Nutrient Stew - Herbs
  3. ICDs and More

Jon.


Andrea Meadows, January 31, 2001 - Hi, I hope this day has been a good one for everyone. I feel really weird today. It is very hard to describe and scary. I often have feelings of "weirdness" but this is worse. It's like a creeping tightening of my whole chest and neck, then I get dizzy and "dim." It lasts about 3 minutes and then goes away for a little while. I also have a cough today that is wet. I suddenly feel full of fluid. There is not much visible edema in my legs but my hands are rather puffy. I think I'll call my doc, but would like to hear from you guys too. You're in my prayers. lumina912001@yahoo.com


Bill D's January 31 reply to Anna N's January 31, 2001 - Hi Anna, I took amitriptylin for neuropathy of my feet. It really dried my mouth out! The doctor said it was too small a dose for depression. I put up with it for 6 months. I have always had troubles sleeping. I've been "hooked" on Restoril, (Temazipam 30 mg), for the last 12 years! Still, it gets me to sleep for 6-8 hours at a time. You have to think about your sleep problems. Do you get to sleep within 15 minutes but your problem is staying asleep? Restoril will keep you sleeping longer but it doesn't help you get to sleep. Tylenol PM does that. Bill D. billdog@gate.net


Bob N's January 31 reply to Ginger's January 30, 2001 - Hi everyone, I check this web site every once in awhile. I have DCM and heart failure. I was diagnosed in March of 2000. I have lost 100 pounds from being on a low sodium and low fat diet. I also ride an exercise bike for an hour a night. I watch tv, have my decaf coffee, and even read the paper while I am riding. I do not put any restrictions on the bike, I just let it free wheel. You don't need to sweat to lose weight. It is a very easy exercise to do and there is no pain. I have no problem with this and I have an EF of only 15%. Remember, you feel better at 200 pounds with a bad heart than at 300 pounds with a good heart. Also, I am a believer in vitamins and CoQ10. I hope someone can use this info. Good luck to all, Nick. bignick42@aol.com


Diane P, January 31, 2001 - Hi, I am in a quandary. My history includes 3 heart attacks with ischemic CHF. I was hospitalized at UF Shands Hospital in October for inotropic therapy. They did a left and right cath. The left cath showed that CAD has closed one of my bypasses and the ungrafted vessel is also closed.
     These are my meds: 10mg Vasotec twice daily, 0.25mg digoxin, 25mg Aldactone, 50mg Lopressor twice a day, and 30mg Imdur. I got a new local cardiologist who did a new test to look at my HDL. While my blood looks okay it turns out that 99.9% of the people in US have more large HDLs than I do, so now I am on one gram of time-released Niacin. I have slept with oxygen at night because of a satuaration drop while sleeping. My new cardiologist says it is not my heart causing this oxygen problem. I went to a lung guy who said it is not COPD.
     Last night I did an overnight sleep test. The tech said I do not have enough apnea for a CPAP. When I have no O2 I have horrible nights with 12 hours sleep needed. What's a girl to do? I also discovered on the Net that I have type 4 hyperliproteinemia which explains my hypoglycemia, fat (carbs are evil four type 4) and other symptoms. Now I am trying the Zone Diet. I have fought weight all my life and need to lose 50 lbs. I haven't been successful in this project. I gained 10 lbs on Weight Watchers in 2 weeks. I ate cucumbers for 2 days to jump start my diet with no effect. Any suggestions? Diane. fjpage@n-jcenter.com


Ginger, January 31, 2001 - Hiya, I want to thank everyone for their e-mails and replies about the exercising. Jon, you are so right about one thing: If I wait till I "want to," I won't. That's the laziness in me coming out, I guess. <lol>
     Anyhow, I have another question, but it's not because of me. It's about my stepdad. Are there rules or laws about driving a car if you have a defibrillator implanted? They are 95% sure he will need one with the EP Study so I was wondering about this since he does still drive. If he can't, I need to know it to make plans. I don't know who to ask since I was to stupid to think of it at the EP doc's office today. So if anyone knows, I sure would like to hear from you. Thanks ya'll. Hugs and prayers, Ginger. angelgin@bellsouth.net


Sarah F's January 31 reply to Anna N's January 31, 2001 - Hi Anna, The use of multiple drugs is an ongoing worry with all CHF patients. I do know that amitriptylin, commonly known as Elavil, is used for patients who suffer sleep loss due to fibromyalgia. What I don't know is how common it is to prescribe it for patients who also have CHF. Did the doctor who prescribed it consult with your cardiologist? If not, that is where I would start to clear up your concerns. It is very important for you to get proper rest. Your doctor can assist you in deciding risks versus benefits of any medicine. I understand your dilemma and wish you well. Take care, Sarah. sfuhrmeyer@neo.rr.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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