Jon 12-18 back from St. Louis
Wendy O's 12-19 reply to Cheryl C's 12-14 to get an ICD or not
John K 12-19 intro
Debra S 12-19 is this a scam?
Jon's 12-19 reply to Debra S' 12-19 for what it's worth
Carol B 12-19 why can't the heart get strong again?
Jon's 12-19 reply to Carol B's 12-19 the heart getting strong again
Faye M 12-19 seek Aldactone experiences
Michael S 12-19 seek experiences with this pacing therapy
Jon 12-22 moving stinks
Holly 12-22 having difficulty coping
Debra S' 12-22 reply to Wendy O's 12-19 to get an ICD or not
Karen S' 12-22 reply to Michael S' 12-19 ICD's pacing therapy experience
Emil 12-22 seek blood stem cell therapy experiences
Tina P 12-22 scared and uncertain - can anyone relate to this?
Jim C's 12-24 reply to Tina P's 12-22 my experience
Tom S' 12-24 reply to Tina P's 12-22 my experience
Sandy N's 12-24 reply to Tina P's 12-22 keep learning
Peter S' 12-24 reply to Scott B's 12-5 ICD risks versus benefit
Micheal S' 12-24 reply to Jon's 12-22 ICD shocks & options to correct this
Debra S' 12-24 reply to Emil's 12-22 stem cell therapy
Cheryl C 12-24 deciding to get an ICD or not
Ben B 12-24 ICDs and sudden cardiac death
Connie S 12-24 what about valve stenosis? what next?
Jane A 12-24 thank you for replies
Jeannine L's 12-24 reply to Emil's 12-22 VesCell personal experience
Sandy N's 12-24 reply to John K's 12-19 inspiring post
Jon 12-27 sorry for the delays
Tony M 12-27 stem cell therapies
Jan H 12-27 is there hope for my husband?
Sam G 12-27 seek info on artery problem
Tina P 12-27 Christmas surprise
Norma L's 12-27 reply to Jim C's 12-24 prayer is critical
Jimmie R 12-27 will I be able to keep driving?
Ryan A 12-27 how long will my grandmother be here?
Jennifer T 12-27 should my dad see a CHF specialist?
Jon 12-29 still packing
Carol B 12-29 seek CHF doc in Columbus/Fort Benning Georgia area
Pat Y's 12-29 reply to Jimmy's 12-27 driving, mental sharpness & more
Isabelle K 12-29 seek CHF doc in Florida
Jon, December 18, 2005 - Hi everybody, Well, we're back from this trip to St. Louis. We picked out a house, got a contract bid and accepted, and all the usual wheels are in motion to make the purchase happen. As you might guess, I'm very tired right now. I'll try not to get any further behind than necessary. After seeing my income for November (the lowest month since 2002), it's a good thing my wife took this job! I learned that packing is tiring but house hunting more so. <g> More later - I really need to rest for awhile. Jon.
Wendy O's December 19 reply to Cheryl C's December 14, 2005 - Hi Cheryl, I believe you should rethink your decision not to have an ICD. They told me I didn't need one because my heart function was above 50%. However in June I had a cardiac arrest which the doctors said should never have happened at that level of heart function. Lucky for me my husband was home at the time and they were able to restart my heart and prevent brain damage. The ICD would have prevented my having to be ventilated and a three week hospital stay.
I now have an ICD and it takes a lot of worry away from my family that they can leave me alone and not have to worry if I will be alive when they come home. Don't think that because you are stable and on meds that it cannot happen. It is a terrible thing for a family member to find you after a cardiac arrest. My husband said he couldn't have lived with himself if I had not made it. So talk it over with your family and see how they feel but the final decision still remains with you.
Best of the season to all and thanks Jon, for running this site. It is really helpful. Wendy. email@example.com
John K, December 19, 2005 - Hello, This is a great site! I am glad to know I am not alone out here. I was diagnosed in March of 2005 with CHF. My EF was 20% then and is about 40% now. Thanks to God and my family I have had no problems so far. I have lost about everything not being able to work but there is one thing I won't lose, my life. Forget that 5 year stuff. I am 41 and looking forward to a long life. I have the best wife and 3 great kids, I am not going anywhere. This web site has helped a lot.
My doctor is the best around so if you are in South Carolina, drop me a line. I have been on Coreg, Demadex, Altace, Lanoxin, Aldactone and potassium and it seems to be working. I walk about a mile a day with no problems at all.
I am going to beat this and so will you. Have a merry Christmas and a happy new year. If you have any questions, please feel free to contact me. But beware, my wife will talk your ears off! Thanks and good luck. firstname.lastname@example.org
Debra S, December 19, 2005 - Hi Jon, I just received an e-mail from reverse_cardiomyopathy. Have you ever heard of them? Is it a scam? Debra. email@example.com
Jon's December 19 reply to Debra S's December 19, 2005 - Hi Debra, If you mean reversecardiomyopathy.com, I don't think it's a scam, at least not as far as I know. However, I have consistently refused to link to their site, if that tells you anything. Jon.
Carol B, December 19, 2005 - Hello, My question concerns the heart muscle. I understand it is not like the other muscles in the body - i.e. legs or arms but but why can't it be returned to its former strength in some fashion? Thank you. Carol. firstname.lastname@example.org
Jon's December 19 reply to Carol B's December 19, 2005 - Hi Carol, Sometimes it can return to its former strength but other times it cannot. This depends on what kind of damage and how much damage occurs to it, as well as many other factors. Jon.
Faye M, December 19, 2005 - Hi, I have IDCM diagnosed since 4/05 but have had severe fatigue for the last 5 years. I just went for another checkup with echo and my EF has not changed from 33% since June but my left ventricle and atrium have enlarged some. This has frightened me. My EF was 20% in April and I couldn't walk 5 minutes without having to sit down. Now I'm doing 45 minutes of cardiac rehab. I'm on Lanoxin, Vasotec, Coreg (just recently up to 12.5mg BID), Lasix and potassium as needed for fluid retention. Aldactone was just added to help keep my heart from enlarging.
Has anyone else had a good experience with Aldactone decreasing heart size? And do you have to really restrict your potassium while on Aldactone? Thanks - I'm still in shock from this diagnosis and any help will be greatly appreciated. email@example.com
Michael S, December 19, 2005 - Hi all, I haven't posted for quite some time, and I hope all is well. I will explain my recent history and would appreciate some input. I have been in heart failure, stable at 20% EF since July of 2001. I went in for gall bladder surgery the 27th of October. As they put me under, my ICD shocked me (this 1 I did not feel). Bringing me out of anesthesia my ICD shocked me again although I felt it slightly. The docs did not seem to think this was anything to be concerned about.
On the 26th of November I got a horrible dizzy feeling and the dirty yellow circle started closing in. I was coming back and was shocked again, and this one I definitely felt - it was like grabbing a 120 volt line. They upped my amiodarone (Cordarone) to 400mg a day until the 12th of December at which time I dropped back to 300mg a day.This past Friday evening at about 10:15 PM I got dizzy again, and again I was zapped.
These are the only times this has happened so the Medtronic technician added an 8 beat atrial pace to happen if my heart rate spikes again. Also they have increased my amiodarone back to 400mg per day. I cannot sleep without taking at least 0.5mg of ativan each night and today was told it would be okay to take in daytime. I am so anxiety-ridden that I am afraid to walk fast or even bend over and I imagine my heart going wacko all the time.
My question is, does anyone have this 8 beat therapy pacing active for the same reason, and does it really work? Oh yes, I had a cath done last week and my stent and 2 remaining arteries are wide open. I have ventricular arrythmia, hence the pacer and ICD. I am also on 25mg Coreg, Valsartan, spironolactone, Lasix and potassium, plus vitamin C, a multivitamin, CoQ10, fish oil, and red yeast rice (for cholesterol maintenance). Thanks all, Michael S. firstname.lastname@example.org
Jon, December 22, 2005 - Hi everybody, Well, if packing doesn't kill me then I'm pretty sure unpacking at the other end will. <g> I'm behind on posts and e-mail and will catch up as I am able. Jon.
Holly, December 22, 2005 - Hello, This is my first time posting on this site. I've been reading for months. Thank you all for the info and support you offer. I am a 49 year old with CHF due to a catheterization gone bad. I have an ejection fraction of 20%, and 36% of my left venticle is scarred from heart attacks. I had an ICD implanted in July with no improvement except maybe a little piece of mind that I won't die a sudden death.
The doctors are trying to keep me off the transplant list but things aren't going well. They had to stop the heart meds Coreg and captopril because my blood pressure was running 58/40 and I was not able to do much of anything due to dizziness and nausea, let alone being totally exhausted all the time! I was feelng a little better for about a week and now I'm back to being nauseous and tired all the time.
I've had to increase my Lasix from 80mg to 120mg to keep the fluid off since they stopped the other meds. I just wish I could find a way to feel better more often than not. Does anyone have any good coping skill suggestions? I seem to be strong when I feel good but really crash when I feel lousy, which is most of the time. I guess I just wanted to vent a little. Thanks for listening. email@example.com
Debra S' December 22 reply to Wendy O's December 19, 2005 - Hi Wendy, I agree with you about the ICD for Cheryl. That is, if her doctor still advises it. I went into a cardiac arrest in July of 2002. I now have an EF of 15%. It would have been much different if I had had an ICD. If my doctor had recommended it I would have done it. People should not be afraid to do these things (easy to say) since it could save their health or lives.
Jon, you do a wonderful job with this site! I hope you are feeling better. I don't know how that reversecardiomyopathy.com found me unless perhaps from your web site. I'm not being critical, it's just amazing how the web works. I've had good contacts from people in regards to stem cell studies. I do not fit at this point because of my low EF. Maybe I'm better off until more trials are done. Debra. firstname.lastname@example.org
Karen S' December 22 reply to Michael S' December 19, 2005 - Hi Michael, My husband was zapped on 9/08/2005. That was his first zap. He initially got an ICD in 4/2003 and it was replaced 6/2005. My understanding is this happened because his heart rate got higher than where the ICD was set. His ICD was then reset so that it would zap him only at a higher heart rate and something was turned on so that the ICD could "think about what was happening before it zapped him." I don't know if this is the same thing as "8 beat therapy pacing" or not.
Since the adjustments, he has not been zapped. My husband was cautious for awhile after his zap but is now back to pushing himself as hard as he can - I've learned not to nag him about this! Take care, Karen S. email@example.com
Jon's note: Honestly, I thought all newer ICDs had pacing capabilities turned on from time of implant to try to gently pace your heart back to proper rhythm before zapping you. It surprises me that this is not the case. This is explained on our ICD page.
Emil, December 22, 2005 - Hi, I am very seriously thinking of flying to Bangkok, having blood drawn and flown to Israel, then flown back to Bangkok and have cells drawn from the blood injected into my heart as a treatment for cardiomyopathy. The cardiologist doing the procedure is Amit Patel from Pittsburgh. It is the same procedure Don Ho had a few weeks ago. The procedure costs about 35,000 dollars US and is not covered by insurance.
Has anyone had this procedure done? Are there any organizations to help cover the cost of the procedure? I have an appointment on the 8th with my cardiologist and will be discussing this with him at that time. Any information you have or questions you guys feel I should ask would be appreciated. firstname.lastname@example.org
Jon's note: Dr. Patil is currently involved in FDA-sanctioned bone marrow stem cell trials. Are you certain he is currently directly involved in the VesCell therapy you describe or is it just his name in the company literature?
Tina P, December 22, 2005 - Hi all, I am a 29 year old single mother and this past September I was rushed to the hospital for having too much fluid around my heart. I was told that they would take the fluid out and that I would be fine but I spent 9 days in the hospital. During my stay I was informed that I had had a virus that attacked my heart and my heart was very weak. They also learned that I had an irregular heartbeat so they put in an ICD. I had never ever heard of this type of thing. I am very scared and do not know much about what is happening to me. If anyone can relate, please let me know. Thank you and God bless, Tina P. email@example.com
Jim C's December 24 reply to Tina P's December 22, 2005 - Hi Tina, I was rushed to the hospital with fluid around my heart a month after you were, but I was having symptoms in September. By now, you should be on heart medication. Are you? Your doctor will have told you to wait and see how well you respond to the medications.
In the interval, avoid salt. Take your meds. Learn as much as you can and above all, do not worry. Take charge of the things you can. I do not know how weak your heart was. I was told that I had an ejection fraction of 20%. However, I am feeling much better and I am almost as active as I was before. I am walking a lot more and I have high hopes of recovering to a large degree.
I am a Christian and I have a whole church of people praying for me. I am experiencing a miracle of healing. I am walking up to 4 kilometers. I pray as I walk. I am age 45 and I have high hopes for the years to come. The material at this site is very useful. You will also find answers to questions. I hope you have a good doctor. God bless, Jim C. firstname.lastname@example.org
Tom S' December 24 reply to Tina P's December 22, 2005 - Hi, First of all, Jon, I know what you mean by moving. I only had 37 different addresses in my adult life spanning 10 states; such is the nature of my career. My sympathy is with you.
All I can say Tina, is you must have had some pretty good insurance because I have been in and out of hospitals with the same thing almost on an annual basis and they balk at doing anything more than the usual massive boluses of diuretics. The last time an ICD was discussed for me it was promptly thrown out as being "ineffective" but then I found out it costs about $35,000 so I realized as a Medicare insurance-only patient, implanting one of those was the least of my worries. I doubt if the Veterans Administration will wanna stick one in either. email@example.com
Sandy N's December 24 reply to Tina P's December 22, 2005 - Hi Tina, Yes, I can relate to you. Your story sounds like mine. Just over two years ago the same thing happened to me. Don't be afraid. If we watch what we eat and drink, see a CHF specialist, and do as were told, we can keep ourselves relatively healthy for a long time to come.
This was very scary to me as well. I cried some and although the first doctor told me to "go home to die" I did not give up and did a lot of research. You found this site, so it looks like you're doing the same thing. Stick around and you will find all sorts of ways to help yourself live longer and feel better. Good luck to you and happy holidays! firstname.lastname@example.org
Peter S' December 24 reply to Scott B's December 5, 2005 - Hi Scott, A few comments regarding your reply to Beverly (ICD) and also to Susie (salt). I agree with your remarks, and was glad to see someone mention a portable defibrillator, also known as an an Automated External Defibrillator (AED). I just purchased one here in Florida and while it is not full-time like the implanted version (ICD), my wife knows how to operate it and it adds a partial safety net since I have elected not to have an ICD for many reasons too long to go into now, but which I have posted on this site from time to time.
Where I would respectfully take issue with you is your comment that an ICD is "minimally invasive." Even a single lead ICD requires that a piece of metal be embedded in one's heart muscle, removal of which for infection, malfunction or any other reason requires a major procedure with open heart surgeons standing by. There are also potential major clinical risks in the implantation procedure itself; you can read a typical consent form to get an idea.
ICDs have benefits and often clear and obvious benefits, but they also have risks, and I don't see the latter discussed that often by those same doctors recommending the procedure. PeterSperl@cs.com
Michael S' December 24 reply to Jon's December 22, 2005 - Hi Jon, The man from Medtronic says that when my ICD was implanted in August of 2001, they had not yet adopted the technology you describe. Today I had 6 false shocks and went to a hospital where they said it was possibly my heart rate increasing but had not reached the threshold to shock me. It still makes me just as nervous so tomorrow I will call my cardiologists to find out what's next. I am beginning to wonder if they accidently clipped something when they removed my gall bladder. I had not been shocked prior to this, then again maybe it is extreme anxiety, so I will start taking full doses of atavan at bedtime and during day. <g> Michael. email@example.com
Jon's note: Even the smaller shocks on a regular basis would make me more than nervous as well - I hope you can quickly get this resolved.
Debra S' December 24 reply to Emil's December 22, 2005 - Hi Emil, Dr. Patel is doing the transplants in Pittsburgh. There is a woman on this web site that had it done and will hopefully contact you. Tony Myrick is going in in January for it. You can contact him at firstname.lastname@example.org. I have Dr. Patel's number but have misplaced it. Cleveland Clinic has started them also. You can contact Dr. Penn there. Mayo Clinic and the University of Pennsylvania are doing them. There is also a doctor in Arizona. So, they are now being done right here. You no longer have to leave the country. Good luck. Debra. email@example.com
Jon's note: Dr. Patel's work is currently using bone marrow stem cells, not the blood-derived cells used in the Israel-Bangkok therapy done by TheraVitae. These are very different procedures and the bone marrow therapy has more potential to date. The Israel-Bangkok therapy called VesCell is not being done under FDA authority in the USA anywhere of which I am aware. Please correct me if I am wrong but this is what all the literature I have shows.
Cheryl C, December 24, 2005 - Hi gang, I'm back again. Just to clarify things here, I'm not afraid of having an ICD implanted. However it seems a little stupid to go through an invasive procedure that could worsen my well compensated heart failure just because I'm now at greater risk than most of the population for dying of sudden death. If that were the case, why doesn't every one of us have an ICD? We are all at greater risk of sudden death because of the CHF. I've never had any heart attacks, do not have clogged arteries, have never had high blood pressure, etc. I was a smoker who had quit shortly before being diagnosed with CHF but the cause of my HF is unknown. My father died of an embolism at the age of 47 as did a maternal uncle at age 51 and my maternal grandmother had HF and died at age 49. However her HF was caused by kidney failure which was the result of high blood pressure. I don't share any of the things physically.
The cardiologolist was exploring with me what, if anything, we could do to hopefully promote longevity (I'm only 56). He agrees now that if it ain't broke, don't fix it. My heart is functioning right now exactly where it should be. That is primarily due to luck with my Coreg and benazepril working well, and my conscientious effort to minimize my sodium intake (500 to 1200 mg per day) and limit my liquid intake along with treadmill exercise and weight lifting (5 lb weights only).
I've continued to work full time, take care of chickens and geese, help harvest grapes and pistachios, and do all the housework and most of the cooking. I don't have time to be sick! God has been on my side throughout this 6-month ordeal and He isn't going to desert me now. If I felt an ICD was truly need, I would have it done in a heart beat <g> so to speak. However I'll never agree to any procedure that appears to be superfluous.
After researching the subject thoroughly, that's what it appears to be. If I'm wrong, I'm not afraid of dying either. Someday I may have a change in my condition and need to reassess what is the proper thing to do. For now I'm going to enjoy my reprieve from feeling poorly and enjoy my life to the fullest!
Best of luck to all of us with the challenges we face every day. Just know that we never face them alone. Jon has provided us with one of our greatest assets - the chance to speak to each other and share. Thanks, Jon. Cheryl C. firstname.lastname@example.org
Ben B, December 24, 2005 - Hello, I wanted to make a point about ICDs and SCD that I think is obvious, but that some people may not fully understand. Just because a person has an ICD does not mean they cannot suffer a cardiac arrest and SCD. ICDs really lower this percentage, but it is still possible. The MADIT II trial described on Medscape at www.medscape.com/viewarticle/487750 (I am sure it is on Jon's site as well) showed that SCD as opposed to other cardiac causes was the cause of death in 61% of the non-ICD patients who died of cardiac causes versus 35% of the deaths in the ICD group.
Now, of course that is a huge difference and people with ICDs should feel very comforted. I'm not trying to bum anybody out here, because I am an optimist and I think all of us have a good chance if we follow orders and get the appropriate treatment for ourselves. However, sometimes it seems that doctors oversell ICDs, although they are a very important part of treatment for the right patients. Of course, someone with serious arrhythmias or who has had a case of cardiac arrest probably needs one. However I personally don't think a person with a 50% ejection fraction, normal sinus heart rate, no history of cardiac arrest, and clear arteries should just have an ICD popped in because they technically have cardiomyopathy.
That is why we have cardiologists and electrophysiologists to steer us in the right direction. Sometimes it seems like they try to sell people on the notion that you can't have a sudden cardiac death period if you have an ICD and that isn't true. If it were, everybody would get one and nobody would ever die because your heart just couldn't stop! By the way, another interesting thing in this study is that they had a hard time classifying some deaths. email@example.com
Connie S, December 24, 2005 - Hello, I was diagnosed with CHF about 4 years ago after the birth of my daughter. I was treated for awhile with a bunch of meds and was eventually weaned off them. I currently take Accupril at 10mg daily. For the last 3 weeks I have had pitting edema in my legs and feet. I went to the doc and they did an EKG (normal), a test for DVT (normal), and I had an echo yesterday. The doctor said it doesn't show any significant signs of CHF, only mild valve stenosis but no sclerosis. I guess that was supposed to make me feel better.
I am wearing compression stockings and was told to make an appointment and they will set up further testing. This is my PCP, not a cardiologist. I know the obvious thing is to see a cardiologist but in the meantime what exactly does it mean to have stenosis in some of the valves? Is this something that will eventually cause serious complications? Does CHF ever resolve on its own or do you have it forever once you are diagnosed? I am totally at a loss here.
I feel like my PCP is giving me the runaround and doesn't really care. Any help you can give will be greatly appreciated. Thanks in advance for your help. Sincerely, Connie. firstname.lastname@example.org
Jon's note: This is the kind of situation the BNP blood test was designed for. I'd ask for one immediately.
Jane A, December 24, 2005 - Hi again everyone and merry Christmas! First, I want to thank all of you who answered my distress call back on the 5th. I was having a really bad day. I would also like to set your minds at ease that I'm not sitting around waiting to die. It's just that I kept ending up in the hospital even though I was doing everything the doctor said to do. I knew they wanted to start raising my drugs to target doses and it threw me into a panic.
Since then I have been able to get some good things going - a new cardiologist, approval for cardiac rehab and a sports therapy doctor who can help me with a bum knee and my weight. I'm the type that doesn't like surprises. I'd rather make decisions when I am well and feeling mentally okay rather than during an emergency. Here in the great northeast, car accidents due to slippery roads are just one more thing to think about. So no, I'm not planning on things to go badly, I just like to be as prepared as I can be. That's why I wanted some objective opinions about end-of-life issues. It was more a research question than a depression question. Thanks for listening. email@example.com
Jeannine L's December 24 reply to Emil's December 22, 2005 - Hi Emil, My name is Jeannine and I had the VesCell blood stem cell therapy for cardiomyopathy back in May of this year. I was the first person to have the Vescell blood-derived stem cells directly injected into my heart. As a matter of fact, Dr Amit Patel did the procedure himself as a teaching exercise. Most cases are now preformed by the Thai surgeons at the Bangkok Heart Hospital. However, occasionally Dr. Patel does travel to Bangkok to perform or oversee the procedure. He does also advise on cardiomyopathy cases received by TheraVitae, the maker of Vescell. I know this because after treatment, I chose to work for TheraVitae as a patient consultant and advocate for this therapy.
I also had my 6 month post-op echo, which shows I'm maintaining an EF in the 40% range. My home cardiologist is thrilled and very optimistic about the treatment I received. I've remained completely symptom-free for the past 5 months. I'm working full time, taking care of my home and my 3 year old son, and considering going back to school part-time. It's a big difference from being confined to my couch.
Jon, I really want to thank you for all the hard work you do. Whenever I meet any new heart patients, I recommend your site highly. Keep up the great work and God bless. firstname.lastname@example.org
Sandy N's December 24 reply to John K's December 19, 2005 - Hi John, Your post is inspiring. Your great attitude torwards your illness will keep you with your wonderful family for a long time. Happy holidays. email@example.com
Jon, December 27, 2005 - Hi everyone, I apologize for the delay in getting posts up. At last, I am getting a handle on the packing though. I think in 2 more days, I'll be done with the workshop/garage, which is the major hurdle in the whole process. Jon.
Tony M, December 27, 2005 - Hello all, Thanks to Debra S giving me the info to the Pittsburgh FDA bone stem cell study. I am going January 23rd for a battery of tests for stem cell therapy. Debra herself is very sick and has given me the hope to try this study to see if I can get in. Dr. Patel called and said that after reviewing my records, he could help me. I was floored, to say the least. I consider Debra my guardian angel for sending me the info. I still have to pass the tests to get the therapy but I think I will be okay.
Vescell is not tied to Dr. Patel but he does assist Vescell help patients in operations and in stem cell tests. The cost in Bangkok covers the hospital stay and the stem cell lab work done in Israel. I am going to have bone marrow stem cells, which are better than blood stem cells but many people may do well with the blood stem cells. Don Ho is doing well from the blood stem cells, but Dr. Patel does bone marrow stem cell trials here in the USA.
Don Margolis of Vescell has called me several times and he doesn't seem money motivated; he wants to see us get well. So if I can't get in the FDA study I always have the option to go to Bangkok and try the blood therapy. I have been e-mailing friends (Nancy and Jimmy ) from Oklahoma and they thought they might go to Pittsburgh and found that he had cancer in the eye 15 years ago and it might make the cancer come back so that's something to think about - if you have had cancer if you looking into this. That's why I am wanting to go now before I have something that keeps me from getting the procedure done in my future. I will keep you guys posted and keep records of what happens. Feel free to e-mail me and I will get around to talking to you all.
Thanks, Tony Myrick. firstname.lastname@example.org
Jan H, December 27, 2005 - Hi, My husband, who is 63 and has had CHF for 10 years, was hospitalized from November 4th to December 15th with pneumonia, which led to heart and kidney failure. He is an insulin-dependent diabetic who had a quadruple bypass 18 years ago and had a pacemaker/ICD implanted in September of this year. Every time they would get his heart dried out, his kidneys would fail and vice versa times about 10. They finally got the kidneys functioning pretty well and they overdid the fluids and put him back into CHF.
At that time they did an echocardiagram and it showed an EF of 8 to 10% and his BNP was over 1300, not good, not good at all. We got him pretty well balanced but when we went to the cardiologist this week he told us that he needed a heart transplant (Merry Christmas!). Is there any hope here?
Would the fact that he was really in severe heart failure due to the fluid overload from trying to get his kidneys working be the reason that his BNP was so high? Can this get better or is this the beginning of the end? Everyone he talks to seems so negative. He is home now and walking around the house for 15 to 20 minutes at a time and is taking the stairs (2 flights) up to the bedroom pretty well.
He's not on any kind of oxygen and really, except when he lies totally flat, has no trouble breathing. He's really down in the dumps and I think that my doctor thinks that I can't accept reality. I can, but if there is hope I won't give up. I am keeping him on a very low (under 1000 mg) sodium, low sugar, renal failure diet and he seems to be keeping fluid off. He seems to be tired a lot, though, especially in his legs.
Am I delusional or is there hope? I am so scared, please help. If I am delusional and there is no hope, can anyone tell me what to expect? I hate not knowing. I've been walking on thin ice for a long time and it's wearing me down. Take care and thank you for such a wonderful web site. I plan to send a donation, what is normal? Jan. Jhu2323@aol.com
Sam G, December 27, 2005 - Hi, Does anyone know something on coronary artery ectasia and whether it leds to CHF? Thanks. email@example.com
Tina P, December 27, 2005 - Hello, Thank you for e-mailing me. I wanted to e-mail you back earlier but I was in the hospital again. We had everybody over on Christmas Eve and I was saying a little speech to tell them how much they have helped me and how much I love and appreciate them. I guess I got a little emotional because my ICD went off and shocked me. It was so strong that I thought someone had slugged me in the chest. I was told by my family that I cannot make any more speeches. I guess I cannot run for president. <lol>
The shock is that I felt better after it went off. The paramedic said that if I did not have it, I would have had a heart attack so I am better now. Thank you for your encouraging letter. Your new friend, Tina. Christinama2000@aol.com
Norma L's December 27 reply to Jim C's December 24, 2005 - Hi Jim, You hit the nail right on the head! Prayer is of the utmost importance to we CHFers! I have Bible study in my home once a week and we have surely been getting understanding concerning God's desire for us to be whole - spirit, body and soul! We need to obey God's command to lay hands on the sick and they shall be healed! firstname.lastname@example.org
Jimmy R, December 27, 2005 - Hi Friends, Merry Christmas to all. I was diagnosed with CHF in March of 2005. I am class 3. JI take 50mg Coreg, 20mg Zestril and 20mg Lasix. What I need to know so as to plan ahead is, is it likely that I will be able to drive in the years to come or do most of us have to quit. My wife does not drive. I am only 56 now with an EF of 15%. Good luck with your move Jon and God bless. Jim R. email@example.com
Ryan A, December 27, 2005 - Hi, My granny, who is 93, just had a heart attack and has CHF. She has a totally blocked artery and the doctors are just continuning medicine at the moment. She has pneumonia in one lung and has good and bad days. I just want a straight forward answer as to how long can I expect her to be around. I just don't want to continue to see her suffer. firstname.lastname@example.org
Jennifer T, December 27, 2005 - Hi, My father has been diagnosed with CHF but the cardiologist will not tell us what stage he is in. I think he thinks it's too negative a way to think but I am frustrated by what feels like a lack of clear information. Also, the cardiologist insists that my father's internist be the primary doctor and only sees him once a month or so. This has resulted in a lot of confusion about meds, diagnosis, etc.
My father was operated on in July for a quadruple bypass and a repair to a hole in the septum of his heart (congenital). He seems in absolutely terrible shape and has been hospitalized 3 times since the operation, twice for what they said was pneumonia and once for a stroke.
I am pushing to take him to a CHF specialist. Can anyone tell me if it's normal for a cardiologist to be reluctant to identify a stage of CHF, and whether it is correct that the internist be the lead doctor? Thank you. email@example.com
Jon's note: A CHF specialist is the only way to go, and now. No cardiologist should recommend treatment by an internist for someone in the condition you describe.
Jon, December 29, 2005 - Hi everybody, Packing for the move continues, oh goody. Hey, how did I accumulate so much stuff?! ;-) My cardiologist sent me a year of prescriptions so I can spend the maximum amount of time cardiologist shopping. Jon.
Carol B, December 29, 2005 - Hi, Can anyone recommend a CHF specialist in the Columbus, Fort Benning Georgia area? God bless. firstname.lastname@example.org
Pat Y, December 29 reply to Jimmy R's December 27, 2005 - Hello, In response to driving, I think we have to monitor ourselves carefully. My cardiologist has never mentioned not driving. However, I noticed that my concentration was interferring with driving especially when going out of town. Therefore, I have limited my driving to around town. On days I am tired I drive shorter distances. Doing this allows me to remain independent. By the way, December 25 was eleven years since my diagnosis.
Many of us have difficulty with depression. I function better when I say now I read magazine articles instead of books, I choose to drive in town only, I choose to do jigsaw puzzles of 300 pieces or smaller rather than those of 1000 pieces. Thoughts of what I can do replace thoughts of what I can no longer do; this helps me mentally.
Don't forget that Jon needs our contributions to keep this site up and running. A little bit from many helps a lot. If you can send $5 per month, think seriously of putting it in an envelope and sending it every month. I have worked an amount into my budget and send it each month when I pay my bills. I hope everyone had a merry Christmas. PTYoumans@aol.com
Isabelle K, December 29, 2005 - Hello, I am a newcomer to all this info and find this site extremely helpful. I am reading and paying attention to the need for a CHF specialist. I have a long family history of CHF and other cardiomyopathy. My fist incident of a-fib was on 12/12. I am on 50mg of Toprol-XL reduced to 25mg when I complained of excessive fatigue.
I am looking for a CHF specialist in Ormond Beach, Daytona Beach, or Palm Coast, Florida. Thanks. IsabelleKingPhD@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.