The paperwork never ends The Archives
November 16-31, 2005 Archive Index CHFpatients.com

Margaret D's 11-16 reply to Bronny B's 11-14     EF does not rise with exercise
 
Roger G 11-16     Medicare versus current plan experience
 
Lisa Z 11-16     my dad has an ICD, my opinion
 
Dale E 11-16     very bad amiodarone experience - be careful
 
Sam M 11-16     questions about my CHF
 
Jon's 11-16 reply to Sam M's 11-16     for what it's worth
 
Jon P 11-17     is my body getting too used to Coreg?
 
Mary Anne M 11-17     how important is spironolactone?
 
Bronnie B's 11-17 reply to Margaret D's 11-16     familial cardiomyopathy scary & more
 
Sue's 11-17 reply to Dale E's 11-16     amiodarone has hurt us also
 
Jon 11-17     got my flu shot today
 
Jon 11-19     computers, doctors and symptoms
 
Sandy N's 11-19 reply to Jon P's 11-17     getting used to Coreg
 
Marty C's 11-19 reply to Jon's 11-17     flu shot
 
Debra S 11-19     seek info on stem cell therapy for the heart
 
Tony M 11-19     shots for flu and pneumonia
 
Jon's 11-19 reply to Tony M's 11-19     shots for flu and pneumonia
 
Ian L 11-21     should I raise my Coreg dose?
 
Jon's 11-21 reply to Ian L's 11-21     based on this only
 
Peter S 11-21     donations
 
Louise B 11-21     seek patient experiences with one doctor
 
Lisa M 11-22     some good news and thank you
 
Sandy N's 11-22 reply to Debra S' 11-19     stem cell therapy for hearts
 
Giorg 11-22     update, exercise training
 
Jon's 11-22 reply to Giorg's 11-22     exercise training
 
Jon 11-24     seeking legal copy of XP Pro
 
Donna V 11-24     good news update and more
 
Jan P's 11-24 reply to Bronny B's 11-14     familial cardiomyopathy experience
 
Jan P's 11-24 reply to Robbi D's 11-12     dealing with depression and more
 
Jeanine L's 11-24 reply to Debra S' 11-19     stem cell therapy experience
 
Phyllis A's 11-24 reply to Lisa M's 11-22     so glad you have improved
 
Giorg's 11-24 reply to Debra S' 11-19     experimental stem cell stimulator
 
Frederick P's 11-26 reply to Jon's 11-12     could Enbrel have caused heart attack?
 
Marty C 11-26     Inspra, ACE inhibitor and potassium question
 
Jon's 11-26 reply to Marty C's 11-26     Inspra, ACE inhibitors and potassium
 
Curt H 11-28     seek first-hand ICD implant experiences
 
Tony M 11-28     Vercell stem cell therapy
 
Jon 11-28     thanks to donors, need some other help
 
Jim C 11-28     newly diagnosed DCM, have faith
 
Wendy E 11-28     is this CHF or emphysema?
 
Jon's 11-28 reply to Wendy E's 11-28     could be CHF
 
Sandy N's 11-28 reply to Jim C's 11-28     congratulations on a good attitude
 
Sandy N's 11-28 reply to Curt H's 11-28     device implant experience
 
Stephanie H's 11-29 reply to Curt H's 11-28     device implant experience
 
Beverly 11-29     should I avoid housework?
 
Jon 11-30     lag in posts coming up
 
Sandy N's 11-30 reply to Beverly's 11-29     housework
 
Bill H's 11-30 reply to Beverly's 11-29     housework
 
Denise T 11-30     seek help understanding my echo report
 


Margaret D's November 16 reply to Bronny B's November 14, 2005 - Hello Bronny, I had a stress echo last summer to look at my pulmonary pressure during exercise. I continued to have increased shortness of breath with any exercise despite my EF having risen a lot. My EF went down 15% during the test and my pulmonary pressure went way up. I have never been so short of breath as I was during the stress echo, and I am very familiar with it. I also have familial cardiomyopathy. I wish I had more positive things to report! mdavis10@tampabay.rr.com


Roger G, November 16, 2005 - Why is this not surprising? I was working with the Medicare Prescription Drug Plan Calculator at www.medicare.gov. I entered my medications and dosages, and came up with the lowest cost plan. Then there are always options to consider like doubling the dosage and using a pill splitter, changing to an alternative medication such as from Avapro to Diovan and so on.
     What I found was the calculator started to have a lot of problems after a few modifications to find the lowest cost dose and medication; I had to go back and restart all over again. So I restarted a few times and was able to shave about $100 off my annual cost. The other issue I found with the calculator was about a 10% difference between the Estimated Annual Cost and the totals under "What you will Pay." As with all government things, once I got through the part of figuring out how it works, I found the system very helpful in narrowing the selection of providers down from 34 to one or two that I would look into more deeply.
     After doing that, I found that my current plan is about the same and in most cases better than what I could get under Medicare - no surprise there. If you plan to keep your current plan and are eligible for Medicare Prescription Coverage, be sure to get a letter from your provider stating that your current plan is as good or better than what Medicare can provide and save it. You will need the letter if you plan to switch to Medicare coverage in the future without paying a penalty. rogergthree@earthlink.net


Lisa Z, November 16, 2005 - Hello, To those of you that are being told to have an ICD implanted and are afraid to do so, here is one different way of looking at it. My dad had his first ICD implanted in January of 2001 after being in cardiac arrest twice. During October of 2004, he went in for a new unit/battery replacement. We refer to his ICD as Fibby, his little guardian angel that just sits on his shoulder in case he needs her. The surgery itself and recovery were not bad at all in his case, and we are fortunate that Fibby has never shocked him.
     However, as his only daughter, I am so glad she is there on his shoulder because I would much rather he get a big zap than me have to bury him. Sudden cardiac death is just that and only the extremely lucky are brought back to life. I would vote for all of us to have a Fibby if possible. Good luck to each of you and God bless. zeigler@zbzoom.net


Dale E, November 16, 2005 - Hello everyone, My dad was taking a dosage of 200mg amiodarone starting in August of 2004. He was not doing well at the time but he was able to work. As we watched him become restless, have insomnia and other things that led to him having what appeared to be symptoms of stroke, Parkinson's, and insomnia all at once, we called the doc and took him off of amiodarone right away. It took him months to gain back any control of his muscles jerks and be able to carry on a conversation.
     We had him go into the hospital to see what the problem was. He was then diagnosed with liver cirrohsis, something that none of his doctors caught before. Now, after looking into this dangerous drug I am beginning to think that the cirrhosis was caused by it. My dad has had CHF since 2001 but we are going on a year now where he cannot function or take care of himself almost at all, thanks to his poor liver function.
     Watch the symptoms closely if you are put on amiodarone (Cordarone). It may have cost my dad his life, because no one wants to do a heart transplant for a liver patient. God bless, Dale. homecapitaldale@hotmail.com


Sam M, November 16, 2005 - Hi there, I'm new here but have been reading over everyone's messages to try to learn more about what happened to me. I gave birth to my first child two months ago. Two days after my C-section I developed congestive heart failure. I had an echocardiogram done, which showed a normal ejection fraction of 60% and a normal-sized left ventricle. The findings on my echo showed:

Also in the report, it states that my right atrium is mildly enlarged and that my right chamber size was normal with a suggestion of right ventricular volume overload. I believe my BNP was 300. My cardiologist said no peripartum cardiomyopathy. He said the cause of my CHF was my elevated blood pressure after delivery along with the mitral regurgitation. He also spoke about postpartum fluid shifts, etc. He stated that I am no longer in CHF.
     My questions are: How is it possible to develop CHF with a normal ejection fraction and no cardiomyopathy or heart enlargement? I understand that mitral regurgitation can cause heart failure, but it sounds like there should be some enlargement of the heart for this to happen. Is my understanding correct here? Any information anyone can provide would be much appreciated. Thanks so much! Sam. dogluvr72@aol.com


Jon's November 16 reply to Sam M's November 16, 2005 - Hi Sam, Here's some info from a CHF specialist on your situation. Of course, these are general comments given without thorough knowledge of your whole situation.
     I don't know if she had edema in her lungs or extremeties but assuming she had volume overload of some sort (retaining fluid), that could have had many contributory causes. Fluid can shift from vessels into lung airways due to leaking vessels. Blood in uterine vessels can shift into the systemic vessels. Fluid in other tissue can shift into the blood vessels. As her doc mentioned, vasodilation in pregnancy can rapidly reverse, increasing blood pressure and resistance to ejection, with pulmonary congestion even while volume expansion in pregnancy continues to have stretched the ventricle and made mitral regurgitation more prominent. That's the "how can" issue.
     The key message may be that her heart failure is over now, is unlikely to recur, and does not require maintenance drugs like beta-blockers, ACE inhibitors, etc.
     I hope it helps. Jon.


Jon P, November 17, 2005 - Hello, I am a person with mild cardiomyopathy, with an EF around 40%. I've been on 12.5 mg of Coreg twice a day for some time now. When I first started taking it, my heart rate dropped to around 43 to 50 beats per minute and my body just seemed to be relaxed all the time, no residual sweating ever, no nervous energy, etc. Over time, my heart rate is around 60 and my body seems like it is much less impacted by the doseage. Is Coreg something your body adjusts to, and will it lose its potency unless you raise the dosage again? Should I go back to the doctor and see about raising the amount?
     He didn't raise it any farther previously because my heart rate was down to 40 when he measured it. It's like my body adjusted to it and doesn't really get very affected by it any more and I'm wondering if this is a good thing or not as it may not be resting my heart enough anymore. pillartime@hotmail.com
 
Jon's note: At a resting heart rate of 60 beats per minute, I would not ask for a dose increase.


Mary Anne M, November 17, 2005 - Hello and thanks everyone, for the info on the potassium levels. I have had some incidents of leg cramps at night. I'm not sure what class CHF I'm in, possibly 3, but am well-compensated. I was given the ICD because of 3 incidents of irregular heartbeat, a-fib after CABG, artificial mitral valve implant, a-fib after using sudafed and V-tach that was self-correcting after abdominal aneurysm surgery. My doctor said this is a preventative implant since CHFers are more prone to irregular heartbeats and possible sudden death.
     I am thinking of ditching the spironolactone because of continued bowel problems and night sweats. I will probably go back up to 100 mg of Toprol-XL from 50 mg. I do take 20 mg Lasix daily and was taking 20 mEq of potassium with that. It is really difficult to limit potassium in the diet and still eat a healthy diet. It must be a very important element to humans since it is so readily available. I think it's more important to good health than spironolactone. What's your opinion? mameredith@nauticom.net


Bronny B's November 17 reply to Margaret D's November 16, 2005 - Hi Margaret, Thank you for responding. It is interesting that you have familial CM and that your EF went down during exercise. I don't understand why someone's EF would go down, or stay the same during exercise. I can't seem to find any relevant info on it. Did your doc say why your EF went down and your pulmonary pressures went up? Because my cardiologist had brushed if off and given me the impression it was just a symptom of DCM, I had not given it any further thought, until I saw a message by Jon on September 27th about it meaning that a serious problem could exist. Now I am worried and looking for answers.
     I will be pursuing it further and I am looking for someone who specialises in heart failure in the city where I live. It is scary having familial CM. I have watched two of the previous generation pass away from this. Also, I have three children who have a 50/50 chance of inheriting this unknown genetic defect. Regards, Bronny. bronnyinaus@batsononline.com


Sue's November 17 reply to Dale E's November 16, 2005 - Hi Dale, Wow, your post about amiodarone really hit home, especially since you mentioned your dad's stroke-like symptoms! My husband has been on 400mg of amiodarone since August and I took him to the hospital's emergency room two weeks ago with stroke-like symptoms! They did every test possible and determined it was not a stroke but they reduced his amiodarone to 200mg and he sees an arrhythmia specialist next Monday.
     My husband is still having trouble with his motor skills - typing e-mails for instance. He walks very slowly and in general seems a bit out of it. We're planning on having a long talk with the doctor about amiodarone because we think that drug is horrible. Thanks for sharing and I'll keep your dad in my prayers. Sue. mae@canada.com


Jon, November 17, 2005 - Hi everyone, Well, I just thought I'd mention that while I was at my regular doctor's office today I got a flu shot. I already had my pneuomonia shot. Jon.


Jon, November 19, 2005 - Hi everybody, Yesterday one of my computer drives died plus I had to get lab work done at the doctor's office. By the time I got back from the doctor's, did the grocery shopping, worked out, and bought and installed and set up the drive, I was shot for the day. Here's hoping I can start catching up on some of my online stuff. Beginning the 9th, all my symptoms came back with a vengeance, and my doc and I are still looking for the reason. On the plus side, although my hips are worse, my lower back pain is almost gone! Deadlifts and Good Mornings every third day. ;-) Jon.


Sandy N's November 19 reply to Jon P's November 17, 2005 - Hi Jon P, I've been on 25 mg Coreg twice daily for about a year now and am very used to the dosage. My heart rate is between 50 and 55. Each of us uses that medication differently. I'm a small woman, 5'2", 120 lbs, so I guess it does not matter how big or small a body is for the dose? Wishing you the best! bleuskiiisgrl@yahoo.com
 
Jon's note: It's very individual - body size matters for some people but not for others.


Marty C's November 19 reply to Jon's November 17, 2005 - Hi Jon, I got my flu shot about three weeks ago and it gave me a little more trouble than recent years. The shoulder ache reminded me of the typhoid/diptheria shots I had before I went overseas. Both my wife and I felt pretty crappy for a few days after the shot, but I'm sure it is worth it compared to getting the flu! Marty. padre45@aol.com


Debra S, November 19, 2005 - Hi, Does anyone know anything about the stem cell transplants that are being done for the heart? Has anyone had it done? I may be a candidate for one program, but the doctors won't give a lot of information because they don't want their studies stolen. I would rather do that than a transplant. Debra. r_steinberg@sbcglobal.net


Tony M, November 19, 2005 - Hello Jon, You seem to be feeling better by the way you respond to posts these days. I had my flu shot the other day myself before the doctor came into the room to see me on a routine visit. I asked the nurse who gave me the shot about the pneumonia shot and she said to ask the doctor first, as we were going over my other problems, I forgot to ask him about the pneuomonia shot. I plan to call him next week about one, but I have never had a pneuomonia shot and I would like to know how they work and what age, type of sickness or illness does a person have to have to get one?
     By the way I had gotten a flu shot for 8 years in row and missed getting one the year I got a viral infection and was diagnosed with cardiomyopathy. I never had a serious cold, was never sick while I had gotten a flu shot those eight years and the year I missed one I got a lingering cold then it turned into the flu and then I was very sick for a couple of months and after I got over all that I diagnosed with cardiomyopathy. I always felt like the flu shot seemed to work like a umbrella on colds and things like that. Some doctors I talked to seem to think I am right and some don't, but I believe a flu shot really helps your immune system. Thanks, Tony Myrick. ynotmyrick@yahoo.com


Jon's November 19 reply to Tony M's November 19, 2005 - Hi Tony, Actually, I've felt so bad since the 9th that I am 5 days behind on my e-mail, which is the worst it's been this year, I think. I am focusing on attitude though, gotta keep a good one to feel good no matter what! I finally resorted to Valium at night for my restless legs so at least I am sleeping now, which is a huge relief. Those twitchy suckers were making me crazy every time I laid down on the bed.
     I've got to buy a new computer for CHFpatients.com use so if anyone knows of a really, really good sale anywhere, please e-mail me about it. I may not buy that specific system but the more leads I get, the better a deal I'll surely get. This one was donated by the company that made MyoVive many years ago and it's just plain dying one piece at a time - I use it hard. <g>
     The pneumonia shot is for anyone with a weakened or not-so-responsive immune system, especially those with a chronic illness. This shot protects you from the bacteria that most commonly cause pneumonia. Medicare covers this if given by your own doctor. By the way, I think native Alaskan people also need this, I just can't remember why. I get one every 5 years. Jon.


Ian L, November 21, 2005 - Hi Jon, Can I ask for your views on something? I have DCM with an EF of 30 and am on 100mg amiodarone, 7.5mg Ramipril and 12.5mg Coreg daily. I sometimes take furosemide if I have a little ankle swelling. My blood pressure is quite low and my heart rate is 60 bpm (normal for me as I was a runner). I'm probably class 2, I can walk a couple of miles usually. Do you think I should be trying to increase my Coreg dose as it's well below target dose or let it run as my pulse and blood pressure are already low? I don't have any other medical factors such as blocked arteries or diabetes. Thanks, Ian. Lleweli@aol.com


Jon's November 21 reply to Ian L's November 21, 2005 - Hi Ian, Well, I don't know your blood pressure or why you take amiodarone (there must be another medical factor there somewhere), and of course there are always a lot of factors peculiar to any given individual. If it was me, based just on the info in your message and with a heart rate of 60 beats per minute, I probably would not try to increase my Coreg dose at this time. Jon.


Peter S, November 21, 2005 - Hi all, Please refer to Jon's message of 11/19. He is struggling a bit right now it seems both with his CHF problems and the computer he uses to keep this site going. My sense is that a first-rate new computer would be a boost for him - and (selfishly) benefit all of us who relish this site. How about doubling what we might otherwise have donated to the site in December? PeterSperl@cs.com
 
Jon's note: I think I struggle a lot more than this computer does - does anyone know of an upgrade available for me too?  ;-)


Louise B, November 21, 2005 - Hello, I would like to hear from a patient of Kathy Thigpen at Pacific Heart Associates, St. Vincent's Hospital on Barnes Road in Portland, Oregon, as a CHF specialist. I would appreciate any info anyone can give. Thank you. ellseabee@aol.com


Lisa M, November 22, 2005 - Hi everyone, Thanks to all of you who responded to me when I was having a particularly difficult time a few weeks ago. I keep forgetting that although I try to look after my physical self, my emotional self needs some help too! So again, thanks again for all the support; I really needed it and if feels great to know that other people are out there too.
     I got some good news the other day that I wanted to share because I'm so happy. I went to my CHF specialist (one of the best here in Canada) and he told me that I am now not sick enough to have to see him regularly anymore - that is, my EF has increased to over 60% and all my tests came back perfectly normal and I have no major damage to my heart!
     I am so happy, as there were some days that I really wondered if all of this hard work over the past 13 months was really worth it but now the results are showing themselves. I'm starting a new job tomorrow, part-time to start and then go on from there. I am aggressively trying to get a full-time position at the Canadian Heart and Stroke Foundation so that I can hopefully make a difference for someone else. You all have shown me that having a sympathetic ear from someone who knows what you're going through is such a great help!
     Okay, okay, I'm blathering on now but although my legs are still killing me, at least my doctor is working with me to try to fix them (checking out some of the things that were mentioned to me from this site). I'm moving to a new chapter in my life and know that I'm in this for the long haul, and yes, I got the flu shot. Thanks again to all and I'll be monitoring the board here to keep up to date on what's going on with others. Happy holidays to everyone! Lisa. :-) sisu63@rogers.com


Sandy N's November 22 reply to Debra S' November 19, 2005 - Hi, Here are some pages about stem cell research in Texas: www.bcm.edu/tmc/thi/hfresearch.html and www.bcm.edu/tmc/thi/summary1.html#stem. I hope they help. Good luck! bleuskiiisgrl@yahoo.com


Giorg, November 22, 2005 - Hi Jon and everybody, today I had a visit with my CHF specialist. My exams are stable, so no reason to worry right now, but no improvements to be glad of. No improvement despite all my efforts in life style, in diet, in every little thing. My EF is stuck at 35% (four years ago it was 17%, but 2 years ago it was 45%). I cannot complain though, because I can work full-time at a desk job. That is not the career I thought for me but I must thank God to be able to wake up, almost every day and have the energy to go to the office.
     I asked him why weight lifting is not for me. He told me because I do not need that because areobic exercise gives all the benefits and more than weight lifting and is much more tested on CHF patients. I already go twice a week to the swimming pool, and that is enough for my muscle fibers. He suspects that weight lifting in some CHF patients is arrhythmogenic. I am at high risk of arrhythmia. I have an ICD and I had to switch from Coreg to sotalol because of unbearable bigeminy, trigeminy and V-tach. So I think that what I wrote here some weeks ago is not correct - the choice about weight lifting does not depend on the cause of DCM (familial or not) but on the arrhythmic risk of the CHF patient. Thank you Jon. giorgclunei@hotmail.com


Jon's November 22 reply to Giorg's November 22, 2005 - Hi Giorg, It could be that without all those efforts on your part, you would be much worse than you are now! So keep up all your efforts. It was many years before I improved. In fact, it was 8 years after diagnosis before my EF first hit 50%, so hang in there.
     I didn't realize your aerobic workout was swimming! That is actually a compromise exercise, partly resistance training and partly aerobic training. In CHFpatients.com's exercise section, under the topic "Using water as resistance" we state: "Since in-the-water workouts build both strength and endurance, don't also lift weights. Your muscles will not properly recover and you will just get tired. If you want to also lift weights, walking is the best endurance exercise." That's at chfpatients.com/faq/exercises/exercise_resistance.htm. Jon.


Jon, November 24, 2005 - Hi everyone, I did find a computer system that should suit me okay yesterday so I bought it while it was still on sale. I still need a copy of Windows XP Pro for it and that could take awhile to save up for, though. If any of you are Microsoft employees and can donate a copy, that would be great. I need to to keep the current copy of XP Pro on the old system since my wife does CHFpatients.com, Inc.'s finances and mail; she's getting this system to replace her current one which is so old it barely runs at all.
     Sometime in the next few days, I'll be messing around setting things up but I don't know exactly when. If the message board is down 2 days in a row, don't worry - it's me switching over computers. Jon.


Donna V, November 24, 2005 - Happy Thanksgiving to all. This may be premature but today, one year to the day after my biventricular pacemaker implant, I had an echo. I have no official results yet from my cardiologist (not my CHF specialist) but the tech was helpful. He let me watch and answered some of my questions as to what he was seeing. I think he thought I might actually know something about myself - thank you Jon. He told me twice that my heart size is 5.5 cm. In January it remained at 7.5. I tried to remain calm and not jump up and cheer. He was not specific about my EF but said it was above 20% (a first in 3 years!) and and somewhere around 30%. It had gone from less than 20% to 5% before the implant.
     I am trying (without much success) to not be too elated until I get the cardiologist's official report but have already shared this news with my friends, those met through this site. Jon, you give us so much through information but also through close friendships we form on our own as a result, we get support from those friends. This time last year I was relieved and pleased that I had the biventricular pacemaker and a new chance to live. I remain thankful for the life I still have.
     I hope your donations will continue to increase and improve. I decided to donate quarterly so another check will be sent soon. Donna V. dmvditty@aol.com


Jan P's November 24 reply to Bronny B's November 14, 2005 - Hi Bronny, I also have familial CM. My mother died at age 54 and there are several cousins (male and female) on her side of the family who have been diagnosed. It is frustrating that the doctors can't really pinpoint the patterns or predict whether my children are at risk. My 28 year old daughter has some heart problems that are very similar to what I experienced at her age.
     I've been carefully monitored by a major heart center since my early 30s and I wasn't diagnosed until I was 52. I just hope and pray that medical advancements will continue to improve (as they have since my mother was diagnosed 25 years ago) and that we will soon be able to have preventive treatment. I hope you are doing well. prof_jantu@yahoo.com


Jan P's November 24 reply to Robbi D's November 12, 2005 - Hi, To all of you who suffer depression, please tell your doctor! Antidepressents may help so much, but you also need to talk to someone about it. If your cardiologist is somewhat jaded as mine is, find someone else. My internist let me cry in her office on several occasions. My rheumatologist let me cry. Many of my friends just don't understand, so my doctors have been life savers for me.
     Don't be hesitant to admit you are struggling. Thanks to Jon, we have this forum. If you are struggling, can't find someone to talk to, and can't afford a counselor, contact some of us who have been there and vent. Blessings to you! prof_jantu@yahoo.com


Jeanine L's November 24 reply to Debra S' November 19, 2005 - Hi Debra, I had an adult stem cell transplant in May 2005. I did not qualify for clincial trials, so I traveled outside the USA for treatment. I have since shown remarkable improvement and have returned to normal activities. I strongly endorse the study of adult stem cell therapy and encourage you to check out your options. Make sure you have all the information, so you can make an informed decision.
     If you would like to know more about the treatment I received, visit www.vescell.com. I'm looking forward to receiving my six month results soon and will let everyone know what I find out. Take care and God bless. jeannine_lewis@yahoo.com


Phyllis A's November 24 reply to Lisa M's November 22, 2005 - Hi Lisa, I am so glad about your good news. I also was told by my CHF doc that I don't have to see him for a year. He said I'm doing all the things I am supposed to do, and it is working for now. philaphyllis@aol.com


Giorg's November 24 reply to Debra S' November 19, 2005 - Hi Debra, About stem cell therapy, there is something very new on the horizion now being tested on ischemic DCM - see www.futurepundit.com/archives/003078.html. The injection of some hormones may spur the body to produce more stem cells whose role in the body is to repair cardiac tissue. My cardiologist told me he is enthusiastic about this. The only doubt he has about the utilization in me with familial CM is, if your cells have a genetic defect that brings low contractility, what about the new cells that the spinal fluid would produce? Would they have the defect from the beginning? In this case, they are clearly not able to repair any damage.
     What about arrhythmias? The small test they had showed no risk about those, but who knows on large numbers of patients? My cardiologist told me that if I want to try, I can go for it but it is too experimental. I am still between class one ands class two. I do not know whether that techinque is already tested somewhere else in the world than in Italy, where I live. giorgclunei@hotmail.com


Frederick P's November 28 reply to Jon's November 12, 2005 - Hello, I am totally confused because my wife of 49 years died suddenly on July 30, 2005 of an apparent heart attack. She had no history of heart trouble and she underwent a stress test done by my cardiologist in February, 2005, which she passed with flying colors and the cardiologist said that she did not require any medication or follow-up visits. She was only 67 years old and I was sure she had 15 or 20 more years ahead of her!
     She was taking self-injected Enbrel since June 20, and last had it on July 28, giving herself the injections once each week. Could Enbrel be the cause of her sudden and immediate death? I have no idea, but there are stories of problems with Enbrel. I wonder what I should do to find out the truth. So long, everybody! PriorSoftrum@aol.com


Marty C, November 26, 2005 - Happy Holidays, everyone! I've got a quick question for Jon or one of you other experts out there. Thanks to becoming "dangerous" after reading so much on this site, I persuaded my doctor to start me on Inspra about six months ago. I previously only took an ACE inhibitor and Coreg for class one HF with LBBB (35% EF) at age 43. Since I lost a younger brother to HF a few years ago, I have worked hard to be aggressive with treating this illness.
     Anyway, my doc kept me at the beginning dose of 25mg every other day on the Inspra and eventually I asked to be titrated up to the next level of 25mg every day. My potassium spiked up to 5.8 after one week at this dosage, and my doctor responded by taking me completely off Inspra and off Ramipril until my potassium comes down, retesting in one week. I don't want to fight with the doc, but do you guys find that a bit extreme? Please let me know, and God bless. Marty.
     PS. Here's an off the wall tidbit I found interesting: In conversation the other day, my Air Force cardiologist made an odd comment about heart class; he said, "I would have a problem ever classifying a patient with a BNP below 50 as worse than class one." It seems like Jon stated multiple times this would be a misuse of BNP results. padre45@aol.com


Jon's November 26 reply to Marty C's November 26, 2005 - Hi Marty, Yeah, heart class is functional heart class or how well a person physically functions, and is totally unrelated to test results of any kind except possibly certain exercise tests.
     As far as Inspra, at class one, it's probably not a real good idea to be taking it. Class one patients rarely take diuretics so adding an aldosterone blocker like Inspra spikes blood potassium level, which can be very dangerous. I do disagree with taking you off your ACE inhibitor but taking you off Inspra was a good call.
     My new computer is up and running, so I'm very happy. Unbelieveably enough, everthing I want running now actually runs! Imagine that. ;-) Jon.


Curt H, November 28, 2005 - Hello, I hope everyone had a great Thanksgiving! I am scheduled for an ICD implant next week, and I would like to hear from people who have had the procedure. I would like to know first hand experiences with recovery times and anything else you would like to share. Thanks, Curt. chammock@houston.rr.com


Tony M, November 28, 2005 - Hello all, I hope everyone had a safe Thanksgiving. I checked into the Vercell stem cell procedurel. It looks promising except it costs 39,000 dollars to go to a Bangkok hospital and have it done. It not covered by insurance here yet. I also read that the FDA approved the University of Pittsburg to test the procedure on some patients soon. It does look promising to me but I couldn't afford it even if it was 100% safe and worked. I hope its becomes something insurance companies soon make available if it really works reliably for everyone. Thanks, Tony M. ynotmyrick@yahoo.com


Jon, November 28, 2005 - Hi everyone, To date, this has been the lowest donation month in our existence. To everyone who has donated in the past few months, thank you!
     If you would like to help with the site but can't afford to donate, I do need a "mail merge" database made up from a list of names and addresses. This is pretty easy but time-consuming. If you know how to do this for Microsoft Word, please e-mail me. I really need this done but am not finding the time to do it while keeping up the rest of the web site and doing all the e-mail the site generates. Thanks, Jon.


Jim C, November 28, 2005 - Hi all, I am 45 and previous to last August, I used to think I was pretty healthy. I have never been hospitalized since I was a baby and I have always been able to bike long distances even though I was a little overwieght. However, last summer I started to get short of breath. By the fall, I was unable to sleep lying down. In fact I slept almost not at all for 4 weeks. I was out of breath just getting out of a chair. Doctors prescribed antacids and antibloat medication, but did not seem to hear that I felt sicker than I have ever been in my life.
     Eventually (October 15) I ended up in a hospital, where I was told I had an enlarged heart. An angiogram (cath) revealed that my arteries show no sign of disease at all but I have dilated cardiomyopathy with an EF of 20%. I have been avoiding salt, working with a dietician, and started taking Coreg and other drugs.
     I have also been losing a pound a week since August by watching what I eat, and I lost 14 pounds on diuretics for a total loss of 28 lbs. I am self-employed but my clients have been very understanding of my need to slow down. I also have a church full of people praying for and with me.
     The thing is: I feel great! To tell you the truth, I do not feel resticted in any way. I am not pushing it, but I am going for long walks of 30 to 45 minutes at a good pace. We check my EF again in 3 months, and I am optimistic. I am not a statistic, and neither are you. Have hope. Have faith. Learn what you have to learn to stay alive. It ain't over till it's over. I have a beautiful wife and two kids, ages 3 and 5. God bless you. Do well. electricmousetrap@hotmail.com


Wendy E, November 28, 2005 - Hi, My grandfather has CHF and emphysema. Recently he has been experiencing extreme abdominal swelling and his feet are about twice their normal size. In addition, he has been having more and more trouble breathing. Doctors have attributed this to the emphysema but I was reading through americanheart.org and wonder if this is really the CHF out of control and aggravating the emphysema.
     Does anyone have any more info on that or can anyone confirm this? What steps should I encourage them to take (the local doctor doesn't seem to be paying much attention). Thanks so much. wendy@spinning-ball.com


Jon's November 28 reply to Wendy E's November 28, 2005 - Hi Wendy, While I can't be sure long-distance, what you describe are classic symptoms of decompensating (uncontrolled and worsening) heart failure. He should be checked for liver enlargement (due to right-sided heart failure and fluid retention) by physical exam, and he should be tested for worsening left-sided heart failure with a BNP blood test. He certainly needs to see a heart failure specialist! Jon.


Sandy N's November 28 reply to Jim C's November 28, 2005 - Hi Jim, Congratulations on your great attitude and how well you're taking charge of your health! CHF is not a nice illness and it can either make or break you - keep up the good work! bleuskiiisgrl@yahoo.com


Sandy N's November 28 reply to Curt H's November 28, 2005 - Hi Curt, I wanted to wish you the best of luck with your upcoming ICD/pacemaker implant. Mine was implanted a year ago on December 6th and I am so glad I have it. I have not been zapped yet and hope to never be, but it's good to know it will get me when needed.
     Mine was a very easy procedure, with no pain. I was in the ICU for about 48 hours, then home. I used a sling for about a week to prevent me from using my arm, per the doctor's orders. I have more energy now that my heart is pacing at a more normal beat, and this allows me to climb stairs and walk further without being out of breath. You will do great and I'm sending a lot of good vibes your way. Good luck to you. bleuskiiisgrl@yahoo.com


Stephanie H's November 29 reply to Curt H's November 28, 2005 - Hi Curt, I had my ICD implanted on 12/27/2004. The surgery itself was uneventful. Recovery was normal. My recovery time was a little longer than normal because I also had an Optimizer II Study Device implanted at the same time. My ICD is that only, an IDC - no pacemaker - so it only works if I have a dangerous arrhythmia. Because of this there is no benefit of feeling better (physically). I have not been zapped yet but just knowing that it's there is a huge relief to me. howsares@saic.com


Beverly, November 29, 2005 - Hi, If a doctor determined a patient to be at high risk for sudden cardiac death and the patient chooses not to have an ICD, should they refrain from stressful activites like mopping, vaccuming, sweeping, etc? macmember@comcast.net


Jon, November 30, 2005 - Hi everyone, I'll not be doing posts between tomorrow morning and Sunday afternoon. It's nothing serious but I will be unavailable during that time, unless you have my cell phone number. Jon.


Sandy N's November 30 reply to Beverly's November 29, 2005 - Hi Beverly, Forgive me for laughing but I too am in that line of sudden death patients. Housework is what made me laugh! My doctor told me to do anything that I felt comfortable doing but not to lift heavy objects and not to push large items. The vacuum might be pushing or heavy, depending the the carpet or size of the unit? We still need some exercise, so some easy work around the house and the yard may be good for you. Also, it will keep you and your mind busy. Ask your doctor and use your own judgement, and if it feels like alot of work, then don't do it.
     May I ask why you choose not to have an ICD/pacemaker? That is the one kind of therapy that has helped me most, but then we are all different as you well know. Good luck to you and happy holidays. bleuskiiisgrl@yahoo.com


Bill H's November 30 reply to Beverly's November 29, 2005 - Hi Beverly, As one who is at risk and does not have an ICD, I would stay as far away from such activites as possible. But then I did before I was at risk also. bj5250@yahoo.com


Denise T, November 30, 2005 - Hi, Can anyone help me via e-mail to understand my stress echo report? MamiWitAttitudee@aol.com


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004, 2005 Jon C.

Talk to Jon Site Index