The paperwork never ends The Archives
April 16-31, 2007 Archive Index

Jon 4-16     I'm still breathing
Tom S 4-18     what is NCIM?
Laurie N 4-18     questions about bad days and chest pain
James N's 4-18 reply to Jacky B's 4-1     device implant experience
Joe D 4-18     seek Resperate machine experiences
Brian M 4-18     what do all these terms mean?
Cheryl S 4-18     seek Primacor experiences
Cindy C 4-18     seek experiences with thick blood, Coumadin, and diet
Hannah K 4-18     question - ventricular volume versus dimension?
Steven O 4-18     seek CHF doctor in San Diego
Marilyn M's 4-18 reply to Tunny G's 4-4     seek ideas on meds changes and BiV device
Fred W 4-18     does this sound like heart failure? Any ideas?
Georgia W 4-18     I am totally miserable at this point
Sunny M 4-19     is this blood pressure and feelings acceptable?
Karen S 4-19     seek CHF specialist in our part of Florida
Cheryl S 4-19     another perspective on ICDs
Tunny G's 4-19 reply to Marilyn M's 4-18     let's keep doing what works and more
Jack S' 4-19 reply to Fred W's 4-18     another possibility
Tom S 4-19     got an answer!
Mary C's 4-20 reply to Laurie N's 4-18     alternative to nitro for some chest pain
Linda K 4-20     cycles of energy, then fatigue
Paula D 4-20     body temperature up and down?
Barb N's 4-20 reply to Fred W's 4-18     some other possibilities
David W 4-20     pacemaker/ICD experience
Chris L 4-20     seek CHF doc near Lincoln, Nebraska
Marilyn's 4-22 reply to Tunny G's 4-20     CRT, arrhythmia, exercise, and more
George C 4-22     seek info on stem cell therapies
Mary C's 4-22 reply to Paula D's 4-20     thryoid?
David E 4-22     what questions and tests should I ask about?
George C 4-22     seek info on stem cell therapies
Debra S 4-22     seek to know who e-mailed me
Fred 4-25     thanks to all, more info
June C's 4-25 reply to Cheryl S' 4-19     thank you for your post
Jennifer B 4-25     there is hope
Willie M 4-25     does anyone else have symptoms despite good test results?
Terry H 4-25     intro, seek others in the same situation
Chris A 4-25     do you think my mom will make it another year?
Giorg's 4-25 reply to George C's 4-22     stem cell therapies
Kooky 4-25     test result questions and malnutrition questions
Tunny G's 4-25 reply to Marilyn's 4-22     question, and hope you are doing well
Maria 4-25     not sure what to ask but need help for my mother
Rod C's 4-25 reply to Debra S' 4-22     Theravitae's blood stem cell therapy
Gene G 4-25     seek info on disability, ability of CHFers to work in medical journals & more
Leslie N's 4-27 reply to Willie M's 4-25     symptoms without certain heart failure diagnosis
Debra S' 4-27 reply to Rod C's 4-25     stem cell therapies
Ann G 4-27     seek CHF doc around New York City area
Jon 4-30     more and more to do
Debra A's 4-30 reply to Jon's 4-27     trial info
Leslie N's 4-30 reply to Jon's 4-27     e-mail address correction
Maria R 4-30     mom is on continuous milrinone drip
Maria R's 4-30 reply to Brian M's 4-5     when first payment should arrive
Tony M 4-30     sleep disturbance treatment can really help
Beth B 4-30     seek enouragement from those who have been there

Jon, April 16, 2007 - Hi everyone, I'm still breathing. My absence was from several reasons - terrible fatigue, sleep disorder, meds interactions that were particularly bad, and being too sick to keep up with a young puppy. We won't be getting a female later like we planned unless we can find a young adult needing a good home because I just don't have the energy for it. On the other hand, despite being so sick lately, our puppy Jack has made me laugh more than ever and that's a good thing.
     This is the first time I've even been online since the fifth, so I know when I download posts and e-mail I'm gonna be swamped. I'll play catch up as best I can. I see my rheumatologist today and the last of the immunosuppresants has worked out of my system, allowing me to be more active. I just have to see how it goes. Thank you for your concern and for your patience. You guys are absolutely the best, period! Jon.

Tom S, April 18, 2007 - Okay, I'm stumped. Once again the great state I live in is forcing me to have a medical evaluation to determine whether I am a road hazard. My cardiologist filled out the form and entered "NCIM, afib" as the diagnosis. What is NCIM? I know the question was posted on April Fool's Day but I was hoping to get a non-foolish answer. Thanks.

Laurie N, April 18, 2007 - Hello, How do you tell what is a "bad day" and a day that you should go to the doctor? Assuming of course, that you could even get in to see your own doctor (just a little venting there, sorry). The last two days I have felt like doing nothing but sleep. I have very mild chest pain although the docs say my arteries are completely clear so there is no blockage. Can chest pain come from any other source besides your heart?
Jon's note: A small percentage of heart failure patients get angina (chest pain) even though they have no blocked arteries. This is widely known among HF specialists. Nitro tabs may help - they did me.

James N's April 18 reply to Jacky B's April 1, 2007 - Hi Jacky, Although Jon has much information about ICDs and such on his site, I'll share my experiences as well. My initial implant was on Halloween of 2003. :-) (Yeah, I have a sense of humor about such things. <g> My EF was about 20%, LV just shy of 7 cm thick and I was in bad shape. The procedure took longer because the first time they ran one of the leads it was too close to my diaphragm and gave me the hiccups when it paced my heart. I stayed overnight at the hospital and the unit was checked/optimized the following morning. I was discharged that afternoon, roughly a day and a half after entering.
     The following week was one of nothing but rest. After the initial implant, you have to be careful not to do anything that could dislodge or break your leads. I was pretty sore and very stiff so I just took that first week off. After that, I slowly returned to normal routines. I wanted to be absolutely certain my leads were permanent, so for the next few months I was reasonably cautious and limited any semi-strenuous activity. They told me the leads were permanent after 8 weeks; ergo the reason I gave it another 4 to be on the safe side.
     After that, I was back to my old tricks. My EF slowly but surely improved, as did the size of my LV. Today they are roughly 45% and 5.6 cm, respectively. I am very active in the garden, do plenty of do-it-yourself type stuff, am an avid practitioner of Kung Fu and yoga, and pretty much do everything I want. By the way, I'm 38.
     Thursday I had my pacer replaced (3-1/2 years after initial implant). I'll be on easy-going for about 3 to 5 days and I'll return to my regular Kung Fu classes in 2 weeks. I hope it helps.

Joe D, April 18, 2007 - Hi, Has anyone tried the Resperate machine? It supposedly helps lower blood pressure by 20 to 40 points. I was wondering if anyone has used it and what their results were.

Brian M, April 18, 2007 - Hi, I just had a holter monitor on a few weeks ago. It recorded 4400 PACs, 6 runs of SVT, the longest run 4 beats, 313 PVCs and one ventricular couplet. Also the EKG in the doctor's office read sinus tachycardia left ventricle hypertrophy with repolarization abnormality. What on earth does all that mean? I had an ICD implanted about a year ago. Am I going to need a transplant next? Thanks for any help you can give.

Cheryl S, April 18, 2007 - Hi all, I was recently released from the hosptial for the second time this year, with heart failure. I am now on a Primacor continuous drip. Does anyone know anything about them, I have read what Jon has and also all the technical stuff on it, but I would like to hear from someone that has also been on it.
     I am told that it is a "last chance" drug but also told that many people get better on it. Please, if you have been on it and were able to come off, let me know. If you are on it now, let me know what your doctor says about it. Thanks in advance. Cheryl.

Cindy C, April 18, 2007 - Hello, I am new to this site and hope someone can give me some insight. My mother has CHF, diagnosed in 2002. In the beginning her doctor had her on Coumadin, but finally discontinued it. I took her to the doctor last week and during her lab work I noticed her blood was thicker and darker than any I have ever seen. Frankly, it freaked me out. I know she was thinking blood thinner, but my question is what type of foods, etc,.., can I give her to help? She was on Coumadin for two years before and it was a scary time. Any help would be greatly appreciated.

Hannah K, April 18, 2007 - Hi, Could anyone explain the difference between ventricular "end diastolic dimension" versus "end diastolic volume?" My volumes are normal, but my dimensions are very high on my cardiac MRI report. My primary care physician interpreted this as dilated cardiomyopathy (due to ischemia) but another doctor said volume is more significant. I'm confused. Thank you. Hannah.

Steven O, April 18, 2007 - Hi all, Does anyone have a CHF doctor/facility in San Diego that they would recommend?

Marilyn M's April 18 reply to Tunny G's April 4, 2007 - Hi, I read your post and I'm so happy to hear you'er feeling better. I too just got a new biventricular CRT-D by St. Jude. I had been diagnosed with CHF and had a very hard time going to the bathroom, much less anything else. Well, I was put on the CHF drugs about a year ago and although they helped me to breathe better, I could not exert myself. About 2 months ago I was able to get my heart rate up and exert myself more, not a lot, but still better than in the beginning.
     I just had the CRT-D device put in and I noticed when I exerted myself that I was breathing better upon exertion. I just had the resychronization about a week ago as I'm in a new study. What a difference it made! I'm up walking 3 to 5 miles almost daily and that's a big difference. I breathe so much better upon exertion. The biggest difference is I don't get the fatigue after exercising. I get energized after my walks.
     I know the meds helped a lot and the initial device implant helped but the resychronization really did great as well. It's amazing with the technology today. I would never have believed it to be possible. My family all but thought I was going to die a year ago. I could not physically do anything. I could not stay awake to drive and a good day was standing in the kitchen cooking dinner. Yesterday I did 4 miles on the treadmill. I'm just so excited! I know my CHF is not cured, but I never thought I would be where I am today.
     I wonder if my CHF meds get changed if I would be better off to get resychronized - now that my system is more user friendly with the meds? I hope things don't change if the meds get changed. Have you had any experience with this? Best wishes. Marilyn.

Fred W, April 18, 2007 - Hello all, I am posting here looking for insights, I suppose. My story is that I became very ill 6 years ago and wound up in the hospital with what was presumed to be a heart attack. My cardic enzymes were through the roof and I was experiencing chest pain. A cath revealed no blockages however, and nuclear scans did not reveal any scar tissue or ischemia. My echo remained relatively normal but in that first week, my left atria grew in size 50%. It is now "mildly dialated."
     I was diagnosed as probable myocarditis and released. I never regained my stamina, the chest pain never went away, and I started experiencing syncopal episodes. I was given a tilt table test and diagnosed with postural orthostatic tachycardia syndrome. I was assured my heart was fine. I still have had no return of stamina and the doctors started to throw around psychiatric diagnoses and chronic fatigue syndrome.
     My heart has been imaged every which way from Sunday. Occasionally it is slightly thick (usually normal), occasionally it is slightly large (usually normal), the left atria is mildly dilated and my right sided pressures are mildly elevated (35 mmHg). My workup expanded to included neurologists, endocrinologists, rheumatologists and pulmonologists. All found basically no problems, save the autonomic dysfunction.
     Flash forward a few years and I cannot work and am bascially bedbound most of the time. My fatigue has morphed into outright shortness of breath. The chest pain is excrutiating at times. In 2004, I finally get a Vo2max test performed and it confirms my functional status. I scored a 16, and I was 35 years old at the time.
     Moving forward to 2006, the pain is unrelenting, I am SOB even at rest and a repeat Vo2max test puts me at 15, with the interpretation of the people at UCLA being a cardiovascular limitation. Armed with this and back to my local cardiologist (a heart failure specialist of some renown) he muses that perhaps I have diastolic heart failure. However, I have no ankle edema (I am too overweight to know if I have it in my constantly upset stomach or liver). I have never had crackles in my lungs. My neck veins are not distended.
     Come the end of 2006, I frequently awake feeling like I am suffocating. I cannot cross a room without being severely short of breath. I am getting weaker. Pulmonary testing reveals normal lung function. A few BNP readings top out at 30 with most less than 5. The cardiologist started me on an ARB and a diuretic with no improvement in symptoms. I am getting ectopic beats out the yin-yang now and as I type this, I cannot nap as it causes my chest to feel crushed and I am unable to breathe. A few weeks ago we repeated a Vo2max test at my local cardiogist's, with an echo after the stress portion. There was no evidence of ischemia. My EF is 55% (has never been below that). My heart chambers contracted normally with exercise. My Vo2max now is 23. I am 38 years old now.
     What do you think? Is this heart failure? I asked my cardiologist this last visit and his reply is, "Heart failure is a set of symptoms caused by inadequate cardiac output. Your testing and physical exam would favor you not having heart failure, however your functional status and symptoms would indicate you do. I would say you have a cryptogenic cardiomyopathy, and fully recognize this is a bull**** answer." I like doctors who are straight up with me but in the meantime I am getting worse and do not know where else to turn. Does this sound like heart failure to Jon and the rest of you?Any other ideas? Thanks.
Jon's note: Only guessing, but this could be obesity cardiomyopathy with severe deconditioning.

Georgia W, April 18, 2007 - Hello, I haven't had an opportunity to respond to much. Jon, I am sorry to here of your troubles. I am in class 4 CHF. I am the one the heart doctors gave up on. I have had 2 bypass surgeries, 10 stents, was hospitalized twice with fluid retention. I have had 6 heart attacks, 2 of them severe. My EF went down to 15%. I think it is close to 30% now but my heart rate is in the lower 50s. I have fallen twice and pulled something inside so now it is clicking again. My doctor wants to raise my Coreg dose but can't until my heart rate comes up. I am not physically capable of any of the machine devices they have. My memory is totally messed up.

Sunny M, April 19, 2007 - Hi, I have not posted before but often do research. I have class 3 CHF, am on Coreg at 25mg twice a day, plus digoxin, Aldactone (spironolactone), Lasix, lisinopril, metformin and have a BiV pacer with defibrillator. I am a 67 year old gramma of 13. I have off and on days as you folks speak about. Yesterday I felt weird, pressure in my chest, was weak and dizzy, and decided to check my blood pressure. It was 103 over 48 with pulse of 47. I laid down and 10 minutes later it was 97 over 44 and pulse of 60. Twenty minutes later it was 113 over 58 and pulse of 60. I called the cardiologist's office this morning and the nurse said that was within acceptable limits.
     I am writing to see what any of you think? Thanks, Sunny in Oregon.

Karen S, April 19, 2007 - Hi, I am writing on behalf of my 93 year old father. I have been trying unsuccessfully to find a CHF specialist in my area of Delray Beach/Boca Raton, Florida. If many of you are surprised at his age, I will first of all tell you that my father has had dilated cardiomyopathy for over 20 yearsm maybe longer. Fourteen years ago, he was told he was critically ill. Somehow he has remained out of the hospital until March of this year. He had fluid in the lungs and is not doing well.
     We live too far away from Miami to take him there for routine care. I checked the site's doctor listing but there is nobody close by. If anybody knows somebody, I would appreciate hearing from you. In summary, no physician can tell you how to predict the outcome of CHF. There is hope for everybody!

Cheryl S, April 19, 2007 - Hi to all, As I previously posted, I've had a great deal of uncontrollable life stress lately so I decided to take the bull by the horns and sign up for a weekend spiritual retreat on wholeness/wellness at a beautiful mountain resort near here. Ten minutes after arrival I'm ensconced on a comfy leather sofa in front of a magnificent fireplace in front of a wall of windows. The leader talked soothingly, as I admired how the the sunlight filters down to the forest floor through the trees. Suddenly it felt as if the room and my body were turned upside down and shaken. Next, a fist hits my chest. After I recover, I realize my ICD has fired - in front of 28 people, no less, who were terrified.
     That was Friday. I got through the rest of a pleasant weekend feeling okay but tired by Sunday with no further shocks. Monday, I transmitted the tape to Cleveland Clinic and the doc there tells me I had a true life-threatening attack of V-tach but the device worked perfectly. I have never had V-tach since idiopathic cardiomyopathy hit me 9 years ago. I had the ICD placed back on February 7th after much prayer and soul searching. I wasn't sure it was worth it for just an insurance policy.
     The ventricular lead dislodged right after surgery and I had to go back and have it reattached two weeks later. I questioned whether to go through it again, but it felt as if God and my heart failure doc were urging me. The doctors do not yet know why this happened but are running tests to determine if it was just the 25% EF and CHF or some out-of-whack electrolytes.
     I'm sharing this to give another perspective on the decision to get an ICD or not. Meanwhile, I may need to rethink this benefits of relaxation thing. It might kill me!

Tunny G's April 19 reply to Marilyn M's April 18, 2007 - Hi Marilyn, It's good to hear from you. CRT-D optimizing has really put the icing on the cake for us, so to speak. Meds are so important, though. I haven't had any med changes since the optimizing was done. I do not welcome any changes at this time as I am doing so well that I would be reluctant to change not only meds but anything. I am so happy where I am and do not want to possibly mess things up. I'm sure you know what I mean. Unless there is something you feel might be better for you, I would not change any meds, unless if the change doesn't work, you can get back to where you are now. You know - if it is not broke, don't try to fix it.
     You are doing remarkably well with exercising. I had my CRT-D checked today and also had a doctor's refreshing on reading the computer with a St. Jude Medical rep looking on. The 20 minute appointment ended up being 2-1/2 hours. I didn't mind at all as everything is perfect with my CRT-D and these people have been so good to me.
     Let's just keep on keeping on with the CRT-D, excercising, meds, proper diet and such. Jon, you are super. You do have a place in heaven but don't rush it. We desperately need you here. God bless you and your wonderful family.
Jon's note: It never hurts to e-mail my wife some thanks. She can be contacted through her web page at

Jack S' April 19 reply to Fred W's April 18, 2007 - Hi Fred, Go to and search for "dysautonomia". In addition to my CHF I have been diagnosed with low blood pressure and orthostatic hypotension. Lasix is used to control fluid levels that will help my orthostatic problem and still not cause heart failure problems. I vary the dose based on weight changes. Even when my blood pressure and weight are normal, my dizzy spells and near fainting can come out of nowhere. I have a pacer set for a heart rate of 60. Of course, knowing you and I might have dysautonomia doesn't particularly help, as there is no known treatment for all symptoms. It just tells you that you are no hypochondriac. Jon's answer sounds like something you should consider. Getting rid of flab is certainly going to help.

Tom S, April 19, 2007 - Hi and thanks to Ben. NICM = Non ischemic cardio myopathy. I had a letter transposed. Rather than MCIM as the doctor had written it, it was really NICM. Whatever it is, I guess I am still sick. Thanks again to Ben for e-mailing me the information.

Mary C's April 20 reply to Laurie N's April 18, 2007 - Hi, I take Nexium (free samples - very expensive otherwise) for my chest pain. I just hate the nitro.

Linda K, April 20, 2007 - Hi all, I was wondering if anybody out there has experienced fatigue that seems to come in cycles. For the last 3 weeks, most of the time I felt like Superman meets kryptonite. I was just diagnosed with sleep apnea, but have not started treatment yet. Still, as of late yesterday I am feeling considerably better. I have a little energy and my mental fog has lifted a lot.
     My doctor did some blood work while I was feeling terrible. My sugar, blood count, electrolytes and thyroid all came back normal. This is not the first time this has happened. I feel like I can barely move or think for 2 to 3 weeks and then it lifts with no apparent reason. I understand that fatigue comes with the territory, but for it to rise and fall so intensely seems strange to me.
     The only thing that has changed in my meds is that my doctor gave me some prescription vitamins, but I've only been taking those for two days. Is that too soon to experience results from a vitamin? The last time this happened I had a low blood count. We never did determine why, but I figured as a vegetarian an iron supplement couldn't hurt. I started feeling better within a couple of days of starting the iron and my blood count has remained normal.
Jon's note: I would strongly suggest taking CoQ10, taurine, creatine monohydrate, L-carnitine, and L-arginine since you are not eating red meat. See Nutrient Stew on our site for details.

Maryann H, April 20, 2007 - Hi all, Does anyone have any idea why my PVCs and increased heart rate seem to get worse after I eat a meal? It doesn't even have to be a large meal. Any ideas would be appreciated.

Paula D, April 20, 2007 - Hello, My wife has CHF and recently has been having body temperatures of 95.6° F in the mornings. They go up to 97.6 in the afternoon. Can anyone tell me if this due to the CHF and what has helped? Thanks.

Barb N's April 20 reply to Fred W's April 18, 2007 - Hi Fred, A few suggestions: Make sure you have your blood sugar tested - not just fasting but also get a glucose tolerance test. Undiagnosed diabetes can cause problems with autonomic functions including heart rate. It (and the frequently preceeding insulin resistance) also cause a chronic state of inflammation which damages the heart and blood vessels.
     Second, get a sleep study. If you are heavy and have trouble sleeping on your back and have daytime fatigue and sleepiness, obstructive sleep apnea is very possible. Apnea can also contribute to heart problems and diabetes, or at least frequently is found as an associated condition. CPAP treatment for apnea is non-invasive (though annoying) and can make a huge difference in your quality of life.

David W, April 20, 2007 - Hi, I just want to put my two cents in about the dual chamber pacemaker I had put in last June. I am not sure if it was worth it or not. I had most of June as a wonderful month; it was like I did not have CHF anymore. I felt better than I had felt in years and I thought the dual chamber pacemaker was wonderful, then the thing turned on me.
     I have to have emergency open heart surgery because the bottom leads had poked a hole from my heart to my lungs. They plugged the hole and had to disconnect the ICD part as my arteries are too thin and weak to hold the connection. The pacemaker part just does not seem to help much. I feel pretty lousy again. Maybe it was worth it to have one good month - I dont know.
     Now the pacer is just something there but I don't think it does me any good anymore.

Chris L, April 20, 2007 - Hi, my significant other was diagnosed with CHF 3 years ago. He's had a pacemaker for about 9 years, due to his heart falling out of sinus rythm. To make a long story short, I've seen his (our) quality of life deteriorating slowly but steadily since his CHF diagnosis. Lately, he's having trouble with water retention. On the other hand, his cardiologist just told him that his heart looks the best since he was diagnosed with CHF. He is a patient at NE Heart Institute in Lincoln, Nebraska. Can anybody help us to find a CHF specialist or make recommendations? Thanks for your help.

Marilyn's April 22 reply to Tunny G's April 20, 2007 - Hi Tunny, It's so good to hear back from you.  :-)  I agree totally with you that if it ain't broken, don't fix it. I've managed to go 15 years with heart disease and that's the best motto to have. Unfortunately, I have exercised-induced VT! What happens is the more I exercise the more prevalent my VT becomes and inevitably means more meds.
     I just wonder if when this happens and I know from history that it probably will - if getting resychronized will take away from the meds' side effects, which slow everything down including the VT and exercise ability. I guess I'm just going to play it safe this med change next time and ask for a new CRT to be done if my arrhythmia meds change. It seems to me that if you fix one thing with meds, it helps the breathing but hurts the ability to exert oneself until such time as your system adjusts to that dose of meds. That means your body gets deconditioned.
     Exercise-induced VT stinks. I start off with just a few PVCs and within 6 months I've got tons of PVCs and VT. The more I exercise, the more I burst through the drugs and they don't work so well anymore, then I'm not breathing again. It's a vicious cycle that I have seen over the years.
     I think the CRT is fabulous but I'm not so blind to see that this disease has a progressive nature. I'm going to request a new CRT if and when they change my meds and I can't exert myself. Just an insight that I have learned over the years.
     I want to thank Jon and his wife for allowing such a wonderful site to be available to us. I have learned so much from others and from Jon. I hope you're feeling better Jon. Take care and God bless. Marilyn.

George C, April 22, 2007 - Hi, I would like to hear comments on the stem cell therapy for dilated cardiomyopathy, especially success or failure of Theravitae in Thailand.

Mary C's April 22 reply to Paula D's April 20, 2007 - Hi Paula, Thyroid?

David E, April 22, 2007 - Hello, I first want to thank all of you for your help in the past from this forum. The information is always helpful. Right now I am trying to figure out what questions to ask my cardiologist, with whom I meet May 2nd, and the cardiologist at the transplant center, with whom I meet May 9th; also to figure out what tests I should request.
     Here, in a nutshell, is my situation. I have been diagnosed with CHF and restrictive lung disease. The cause of my CHF is from my heart weakening and enlarging. I also have an ICD. As of January 9th, my EF was 30%. I had a Vo2max test done March 7th and the result was 15.2. From November till about a month ago, I was able to walk around 200 yards before starting to get out of breath. For the past month, I am now only able to walk at a steady pace less than 50 yards before getting out of breath. I also get out of breath when I eat. I have no fluid buildup at all. My cardiologist says that my heart is continuing to weaken and that in younger people (I'm 36), the slide is usually quicker than in older people. My cardiologist thinks that they will retest me at the transplant center and then will push to put me on the list because he thinks I will score low enough.
     Right now, I understand that the tranplant center just wants to make another change to my pacemaker. I have gone from being able to do a lot of things to getting out of breath while doing almost anything, including changing the sheets on my bed. What should I ask them and are there any tests I should request? Thank you all for your help and ideas. I've said this before, this is a great service.

George C, April 22, 2007 - Hi all, I just found this web site and I am delighted with the impressive amount of information being exchanged. I intend to be a regular participant from now on. As an introduction, I am a 64 years old male with idiopathic dilated cardiomyopathy. I have had an ICD since 1993 for my ventricular tachycardia and was diagnosed with CHF 10 months ago. I had too many shocks from my ICD, which I'd rather not think about. However, at the time I was diagnosed with CHF, I had an ablation done that so far has eliminated the fibrillation. I also had a new ICD from Guidant implanted.
     I have the classic CHF symptons (edema, shortness of breath, etc.). Otherwise, I have a fairly decent quality of life. I am very actively researching and looking for possible stem cell treatment instead of just waiting for the next event to happen. I am anxious to exchange information with anyone in a similar situation. Thank you.

Debra S, April 22, 2007 - Hello, Someone e-mailed me about comments I made about Theravite. I do not know what those comments were or how he got my address. If it was from here, please e-mail me here. Thank you. Debra.
Jon's note: It probably was read in The Archives, which are easily searchable.

Fred, April 25, 2007 - Hi all, Thanks for the replies. Obesity cardiomyopathy is doubtful, as my weight is less now than at onset and the onset was quick and dramatic, not progressive and insidious. Regardless, unfortunately the point is moot as I cannot exercise. Severe deconditioning is likely, however not the immediate cause of symptoms as they began fairly suddenly after the initial illness.
     I do have dysautonomia and understand how disabling that can be, however after speaking with so many dysautonmia patients, it is clear that that is not all that is wrong with me. Studies have not shown such poor Vo2max in dysautonomia patients and severe pain is not a usually symptom. I "sound" much more like a heart failure patient symptomatically. Can one have heart failure with BNP levels so low? (Jon's note: I do.)
     My blood sugar is normal. Two years ago an endocrinologist gave me a 3-day glucose monitor. It was very interesting. The leads go just under the skin and sample every 5 minutes. It gives a very good picture of your glucose profile throughout the day; no diabetes here. I've had three sleep studies and I have either no, or very mild (less than will qualify for CPAP), apnea depending on the study you read.
     Thanks again. Please keep the ideas coming.

June C's April 25 reply to Cheryl S' April 19, 2007 - Hi Cheryl, Thank you so much for your post. I had my ICD implanted last November. I was finally convinced by my cardiologist at Tampa General Hospital. Your post made me feel I made the right decision.

Jennifer B, April 25, 2007 - Hi, My name is Jennifer. I am an 38 year old female and this is my first time writing in a semi-formal format. However, recently a very dear friend of mine expressed his feelings toward me and my condition. I want to share my story with you.
     Two years ago (in July of 2005) I was was diagnosed after two months of feeling like I was at death's door, with congestive heart failure. At the time I was diagnosed, I had 10% heart function. I had always been a bit more than average when it came to being active. I definitely enjoyed drinking more than I should. After my week's stay in the hospital, I began researching my new condition, mostly on the Internet and forums like this. More and more, although I did find some encouragement, most of the information on this condition was quite scary.
     The months went by and so did the doctor's appointments, as we all know. At my three month appointment, my doctor could see that my heart was very close to normal. I was ecstatic! Since that time, I have been living differently. I quit drinking altogether and began running. I am planning to run in the Boston Marathon with my doctor's approval in 2009. In the meantime I am doing smaller area competitive runs. To me, time and placement don't matter, it's that I am even there.
     I want anyone out there who has recently found out that they have this condition, to know that there is hope! I know it depends on your own body's response as well, but your outlook is also very important. Don't give up and when your doctor gives you the okay, go out and live life. Use your body to combat this illness. I hope this finds someone that it can inspire. I thank you for reading and thank God for my life!

Willie M, April 25, 2007 - Hi, I'm a 57 year old male who was diagnosed with diastolic CHF in August of 2002. I've been a diabetic since 1979 and on insulin since 1989. I had a heart attack and angioplasty in 1993, a heart attack and 5 vessel CABG in 1996; and a heart attack in 2005 because of a blood clot in my right coronary artery with no surgery - just 3 caths and medicine. I take 10mg prinivil, 100mg Toprol-XL twice a day, 30mg Imdur, 40mg Lasix twice a day, 20mg omeprazole for GERD, insulin, aspirin, 20mEq K-dur, 2.5mg zaroxolyn at least twice a week when fluids are more than 3 lbs a day or 5 lbs in two days. I used to be on Zocor as much as 80mg a day but it caused severe muscle pain and I tried two or three other statins with the same result.
     I just got out of a hospital emergency room yesterday because of shortness of breath. My heart rate was very fast, I was dizzy, sweating, had fluid in my legs and ankles, and a protruded stomach. I was told that I didn't have CHF because my BNP was very low, my EKG was good and an x-ray didn't show a heart problem either.
     My question is - has anyone else been told that they have CHF and been treated for CHF and then told they don't have it, but like me, your physical condition is worsening even though EF has never been lower than 55%? Is it because I don't fit in a neat little box?
     I was in the hospital 5 times in 2005 before they did 2 caths in three days to tell me that I had a blood clot in my heart after I took every test, sometimes three or four times, and was told they could not find anything. I sometimes feel like when I go to an emergency room that they think I'm mental because my tests never show anything. I live in Lancaster, Pennsylvania. I guess I just need to feel that there is something that I can do to feel better. Thanks for any comments and just for reading this.
Jon's note: This is just a quick comment. Once you have CHF, you always have CHF - that's why they added stages to heart classes as explained in The Manual. You are stage C. Don't feel mental - your symptoms are very real. I hope others reply.

Terry H, April 25, 2007 - Hello, I'm new to this great site and am looking to find others who find themselves in the same boat. I'm thinking a mini-support group. I'm a male who is 54 years old and started having episodes of SVT when I was about 14. I went with the whole gambut of beta-blockers with limited success, but continued to work full speed. Beta-blockers were losing their effectiveness so in 1991 I went to a Mayo Clinic for a complete evaluation and was diagnosed with CHF and an EF about 45%.
     I had an ablation done that corrected my SVT. I went on with life without meds, divorced then remarried, bought a campground business, tried to live and eat right and didn't look back. In 2006, I started really noticing low energy levels and had a lot of irregular heartbeats. My wife, who had worked in medical records, snooped around and found a highly respected cardiologist with whom I had an evauluation, including an echo and cath that showed no arterial blockages. I really like this guy. He really seems to know his stuff and I have a lot of confidence in him. Now my EF was down to 25% and I was advised that I met all the protocol for an ICD which he strongly recommended. In September of 2006 I went on Coreg and enalapril, and had a Medtronic ICD implanted by a different cardiologist specializing in ICDs. I had a sleep study and was put on a Bipap machine.
     A couple of weeks ago I had a 7-month followup echo and found my EF still where it was last fall. I run out of gas really quickly. I can walk around without too much trouble, and have no edema but have short periods of shortness of breath which may be as much a part of how I breathe or more accurately fail to breathe, some of the time. My biggest problem is that someone turns up gravity somewhere in the early afternoon and my legs get really tired. The weird thing is me having no edema.
     Unless I tell them, no one knows I have any problems because working in our own business allows me to be selective about when and how much physical work I do when people are watching. I don't really like the idea of people around here knowing I am having trouble but would like to build some friendships with other men who may be in a simular place in life.
Jon's note: Welcome to our club. No one believes I'm sick except my doctors and my immediate family.

Chris A, April 25, 2007 - Hi Jon, Thank you for this web site. Your information is direct and does not require a medical degree to understand.
     My mother (age 65) has just been diagnosed with DCM. When released from the hospital without portable oxygen and with clear valves, we were all relieved but after some research I find her EF of 10% alarming. She has not been very open about her prognosis and I'm beginning to think that is because it's not a good one. She's passing information in bits and pieces, and we're all trying to put it together. I plan to have a one-to-one conversation with her tomorrow and ask her myself, but I'm afraid she won't be completely honest in an attempt to keep us from worrying.
     I know that no one can (or wants) to say it, but can we expect her to last a year or longer?
Jon's note: This depends largely on HF cause, aggressive treatment (elderly people are rarely treated aggressively enough), and life style - as well as God's decision.

Giorg's April 25 reply to George's April 22, 2007 - Hi Giorg, I was told that results of stem cell therapy in curing heart failure were discouraging. There was a lot of speculation years ago, newspapers talked much about that but it did not give the results that the community were expecting. Some centers gave up with experimentation. Some others go on and some good results have been obtained in ischemic heart failure.
     At present, the only end option for refractory (especially non-ischemic) heart failure is still heart transplant, as it was 20 years ago.  :-(  I am a candidate for it. I am waiting with hope.

Kooky, April 25, 2007 - Hi, Well, it has been a few years since surfing this web site. It took a long time to be finally diagnosed with heart failure despite having had the symptoms for so many years and ambiguous test results. I was feeling very ill and took it upon myself to have a private BNP test. My result was 330 pc/ml. The cardiologist is still restrained in his diagnosis of heart failure, but did admit that is what I have. He suggested a cath. I opted for the 64 3D slice angio scan instead. I am just too unwell to go through the cath. Will this scan show valve disease, blockage, and heart failure? Why can't the cardiologist diagnose heart failure on the echo and BNP results alone? Will the scan show heart failure?
     The echo showed trace mitral regurgitation? What does this means? Does it mean it is a valve problem? Also, the report showed trace triscupid regurgitation. What does this mean? Many thanks and grateful for your response and advice.
     Also, does anyone knows which tests I can have done for malnutrition? My diet has been very, very poor for the last 5 years. I was only able to eat chicken, lamb, olive oil, flour, bannanas, green beans, cottage cheese and on-and-off potatoes, apples, pears, broccoli, and carrots. Now that I have cardiomyopathy and heart failure, which tests should I request my doctor to check for malnutrition?
     I forgot to mention the above to him. He is kind and usually does all the tests I request him to do. I prefer to take control and participate in the disease process than leaving it all up to him. In any case, he does not seem to mind or care for that matter. Thanks, Kooky.

Tunny G's April 25 reply to Marilyn's April 22, 2007 - Hi, I am sort of puzzled as your post of April 18th was that you are doing so well - walking 3 to 5 miles and such. Then on April 22nd, you post that you are having problems, and you are talking about seeing about getting another CRT-D, if your meds are changed and you start having problems.
     I have only had CHF for 4 years and had not thought about med changing, especially in the respect that it would affect breathing. I am under the impression that if things stay like they are, they should continue to stay as they are, especially with the optimizing of your CRT-D. Maybe you mean that you had these problems before (in the past 6 years) and since the optimizing you are able to walk 3 to 5 miles and are breathing better. I hope so, hope you are doing great, as I have been since September and feel this to continue, hopefully for a good while.
     Thank you Jon. We pray for you.
Jon's note: As my health problems mount, I wonder if it is only prayers keeping me going. I'll take all of them you can offer!

Maria, April 25, 2007 - Hi to all, I feel like a person who has never prayed and all of a sudden finds themselves in some sort of problem and starts asking God for help. My mother has had cardiomyopathy for the last 12 years as a result of a virus. For the last 12 years she has led a normal life. She took her medications regularly, meditated and kept to a low sodium diet. She worked, traveled and helped me with my children. After many years of her cardiologist's insistence, she had an ICD implanted in November of 2006. Since that date, her condition has worsened. She is currently hospitalized with edema. Her blood pressure is extremely low and this is (I think) affecting her ability to get better. I am desperate trying to get information but the more I read the more confused I am.
     It appears that my mother is having kidney problems as a result of her weak heart. Her EF has been under 20% since diagnosis and I do not know what it is currently. I am having difficulty dealing with her condition and I need as much information as possible in order to help her.
     She is currently taking medications and currently is having a dobutamine drip in the hospital. I am not even sure what to ask of you but maybe you or someone you know has been in this situation and can offer some advice. I thank you and ask for your comments and prayers.
Jon's note: Does she have an ICD, a pacemaker, or a device that combines both?

Rod C's April 25 reply to Debra S' April 22, 2007 - Hi Debra, I too found the information on Theravitae. They only separate the stem cells from your blood and process them in Israel, and the hospitals in Thailand do the work. They do have an office in Dallas, Texas, which I have contacted. I think you will still have to go overseas to do the procedure because all the work being done in the United States is still on trial bases. I like the idea of fixing things, not just patching them. They also have trials going now to help with diabetes. Rod.

Gene G, April 25, 2007 - Hi all, I have been on long-term disability for a few years now (although I still am able to work some part-time hours) and am covered by a Cigna group LTD policy. They recently offered me a lump sum distribution settlement, with a dollar amount that is quite, quite low. They say that their actuarial models came up with that amount based on an assumption that they entered that I would still be able to continue to work for the next 5 years the 26 to 28 hours a week that I have been working to date!
     I told them that this assumption was ridiculous based on the progressive nature of CHF. They replied that they have no data on expected work capablility of CHF patients in their model. I seriously doubt this. Has anyone else received such a lump sum offer in the past? Does anyone know of a good journal article that details onset of total disability from date of diagnosis of CHF? It would be most helpful, since otherwise I feel like I am negotiating from a very uncertain position. You can e-mail me directly if you like. Thanks very much, Gene.
Jon's note: If they have no data on length of ability to work, how can they justify their own figure - pull it out of thin air?

Gene G, April 26, 2007 - Hi Jon, I also asked your very logical question. They replied that, based on my last two years'work record, they could "reasonably expect that I could work the same amount the next five years" I replied that that was an arbitrary and UNREASONABLE presumption when one was considering an obviously progressive disease such as chf. They came back by saying that they had no actuarial data by which to predict progression for me. That's why I have the strong feeling that they are trying to 'snooker' me, to put it politely. So, any help on medical journal articles or Bureau of Labor stats would be most helpful; my searches have been fruitless (I even talked to the statistician at the Amer. Heart Assoc., and she had no data on it). Thanks, Gene.

Leslie N's April 27 reply to Willie M's April 25, 2007 - Hi Willie, My situation is sort of similar. I don't know if it will help, but I'll share just in case. For me it started last year when I was pregnant. My baby (who is doing well!) was induced early because of my high blood pressure. Only after delivery my blood pressure did not go down, it just kept going up. I had 3+ pitting edema in my feet and ankles, and I could not sleep lying down. One night I woke up several times because I couldn't breathe. That day my OB doc ordered an EKG, echocardiogram, blood tests, and IV Lasix. When I was released, the doctor said, "You are a mystery, I don't know if you had post-partum eclampsia, or congestive heart failure."
     I was naive enough to think that since I felt better I must be better. After the IV Lasix got rid of all that fluid I felt a lot better!The next couple of months I felt horrible. I couldn't stand long enough to cook dinner, couldn't carry my newborn baby, but we had lost our insurance so I didn't go to a doctor. Eventually, I started feeling better.
     Last month (11 months later) I was in the hospital because of very high blood pressure and they told me I had congestive heart failure. My EF was 45%. Well, the hospital doc was not on my insurance (yes, we have insurance again, thank goodness) so I'm seeing a different cardiologist. I've actually only seen him once so far. He noted that the other doctor called me a "gentleman" three times in the notes and wondered out loud if he couldn't get that right, what else he might have made a mistake on.
     Because I am currently asymptomatic, he is not certain I have CHF. He ordered a BNP test in a couple of weeks to see. I have read here about people having a fairly low BNP with CHF, so I'm nervous about false diagnosis. The good news is that he changed my metoprolol to Coreg (and thanks to what I read here, I knew that was a good move.) I have had more EKGs than I can count and they are always fine. My chest x-ray was fine too.
     If this doctor decides that I don't have CHF, I'm going to get another opinion. Willie, there are different tests for CHF, I would suggest you see a doc (in the office rather than the emergency room) and ask for more tests like an echocardiogram or MUGA. Leslie.
Jon's note: Is your e-mail address supposed to be "neverstoplearning"?

Debra S' April 27 reply to Rod C's April 25, 2007 - Hi Rod, Dr. Patel at the University of Pittsburgh is doing the procedure in Pittsburgh. He did it on Don Ho in Thailand. There are other centers that also are doing it. Good luck. Debra.
Jon's note: Be certain that you enquire about the right kind of stem cell research. My info is that Dr. Patel is doing adult bone marrow stem cell research in Pittsburgh and the blood stem cell therapy (Theravitae) in Thailand - two entirely different procedures, with only the bone marrow trials FDA-certified.

Ann G, April 27, 2007 - Please help! I need the name of a good heart failure specialist in the Bergen County, New Jersey; Westchester County, New York; or the general New York City area. I am at my wit's end and getting nowhere. I have already lost so much time. I would prefer someone in the suburbs, but would go to New York City for a good doctor. Thanks so much!

Jon, April 30, 2007 - Hi everyone, Well, my daughter has to pay for her own wedding next year, so we're letting her move in until June of 2008. I've been putting up cabinets, hanging pictures still stored, moving stuff to our storage unit, organizing closets, adding towel bars, shoe racks and all the other good stuff this requires. I still have one major project to get going but will try to do better with posts despite puppy Jack teething, meaning he must be watched all the time so he doesn't eat our house! <g> The pup is gaining about 1/2 pound per day, all muscle. The vets say he's gonna be a very big boy, but the kids at the playgrounds love him, as do our neighbors.
     Also, for some unknown reason, I am no longer receiving cardiology news letters from, so if anyone can get them, please forward them to theform at - you know how to make that an e-mail address. ;-)
     Finally, a huge thank you to the reader who sent me a CPAP like new! I see my sleep doc this afternoon to get started with it. Jon.

Debra S' April 30 reply to Jon's April 27, 2007 - Hi Jon, As always you are correct.
Jon's note: I make plenty of mistakes but am good at fixing them before they get widely noticed.   <g>

Leslie N's April 30 reply to Jon's April 27, 2007 - Yes, Jon. My fingers got away from me. It is

Maria R, April 30, 2007 - Hi everybody, My mother had an ICD implanted in November of 2006 and this is when all her problems started. My mother continues to be hospitalized. When the dobutamine drip was removed, my mother's condition began to worsen almost immediately. They have decided to try to put a shunt on Monday morning so they can send her home with the dobutamine. They will have a sort of fanny pack to hold the dobutamine drip. The cardiologist said this will buy us some time. My mother's heart is very large and her EFis 10%. Are there any other options? Have you heard of this? Maria.
Jon's note: Continuous milrinone drip is not uncommon among severe CHFers. Some people do well a long time with it while others don't last long. I am sorry but there's no way to tell which way your mother's health will go at this point.

Maria R's April 30 reply to Brian M's April 5, 2007 - Hi, You should receive your payment within 60 days of the date of your favorable decision (award). If you do not receive your payment you can visit the office and request either and immediate payment or critical payment system (CPS).
Jon's note: If this is Social Security Disability, did they do away with the mandatory 6-month wait for first payment?

Tony M, April 30, 2007 - Hi all, One year ago I was told after a sleep test by my board certified sleep doctor that nightly use of a CPAP would make me feel much better in one year. I was depressed hearing this, knowing that a year is long if you're sick. I have friends who felt better after a few weeks on a CPAP but they didn't go untreated as long as I did or have heart failure. I had S/A pretty bad, so bad it had damaged my lungs so that I was not breathing out spent air (C02). Also, as I inhaled I would only get some of the oxygen with each breath. I had daytime levels of oxygen saturation in the mid 80s and that's low. This had caused me to have incredible hot and cold flashes, due to hormone surges that come after you have S/A thats gets really bad.
     I had insomnia that went far beyond the kind you have with heart failure. I would go 3 to 4 days without so much as a nap. It almost drove me mad. Now as my doctor predicted, I am feeling good again. I now sleep for 7 to 9 hours nightly without nightmares or night terrors as they are called. I sleep in peace and wake up with a positive attitude instead of feeling horrible and edgy.
     I would suggest that anyone who thinks they have sleep issues demand a sleep test. I wish I had one years ago. My heart has returned to a more normal ejection fraction and I move much quicker due to more oxygen in my system. Many heart centers and sleep labs are being built in the same building now. In my city they are building a new heart center and sleep lab right now. Tony M.

Beth B, April 30, 2007 - Hi all, I had my ICD implanted in March of this year and have been in the hospital 3 more times since then. A lead was replaced, I had too many arrythymias (put on Pacerone), and my blood pressure was bottoming out (70/50) with fainting spells. My diagnosis is ventricular tachycardia and dilated cardiomyopathy. My doctors (EP and cardiologist) are excellent and I am 50 years old.
     I was taken off of all meds (Coreg, Altace and Pacerone) yesterday due to low blood pressure and not being able to tolerate the Pacerone. I go in to see the EP today but I'm very discouraged. Aren't the meds there to improve my heart function? Isn't amiodarone (Cordarone) supposed to help the arrythmias? If my body can't tolerate the meds, what are my options?
     I feel much worse than I did after the original surgery and am only now able to sit up for awhile. I'm concerned that my heart function is worsening and am not sure what my future holds. I don't want to die. I'm trying to stay positive but I'm losing the battle. Can anyone out there relate? I desperately need encouragement from people who have been there, and not others (who are well meaning) that tell me to relax and move around more, as though that will solve my energy problem. Help!

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, 2006, 2007 Jon C.

Talk to Jon Site Index