Heart Transplant Evaluation

[TomE44]

Regarding my "heart transplant evaluation".

It's really not as bad as it sounds - I think. My heart guys have wanted to get me on a transplant list since day one - with my EF at 15 that's all the reason they need. As it was told to me "it's just a precaution" - getting in on "the list" and getting known is very important if I ever need to get a transplant. Looks like Cleveland Clinic is the hospital of choice. (Doesn't get any better!!)

The part I don't think I have ever made anyone very clear of is: how bad I was a year and a half ago, couldn't walk - breathe - sleep - exhausted - then I was diagnosed with CHF because my feet started sweeling - put in the hospital and on lasix - didn't know any better so I got better in two days!!! Felt great! Could walk and breathe and eat and sleep - thought I was cured!!!...Then the doctors told me how bad I was - how I was going to need a transplant - did I know how serious my heart was messed up? Well I didn't need to hear that - scared me to death (excuse the pun) - I fired that guy and went with my current Cardio Doc - I at least know he's on my side LOL.

Other than the Atkins diet affair and near death experience this summer with AF - getting implanted with an ICD - it hasn't been all that bad - still walking - working and all that stuff. Thank God!!!

Don't know exactly what I am going to do regarding the transplant evaluation but will work that out too. I am still a class one CHF patient with a terrible EF LOL. But that is why I keep asking all the dumb questions I ask - like - is this condition supposed to get worse? Or was I "worse" and now better? See what I mean.

Thanks for your concern. Sorry I got long winded.

Tom Emahiser

[TomE44]

I guess I didn't form my question very well. I was asking if this chf is a degenerative and continuing process. Like I said - I was very very bad a year and a half ago and got better.(From a class 3 to a class 1) Am I now looking at getting worse?

I am in the process of getting an evaluation by Cleveland clinic (which I don't think is necessary but my cardio guy does). I work every day - stay pretty active and have been symptom free for seven months.

Will let you know about the evaluation.

Tom

[margaret]

I was diagnosed with cardiomyopathy last June.  My heart function is 15-20.  I had no symtoms other than brief periods of dizziness with heart flutters.  The first doctor I saw was also very abrupt in giving me the bad news about my condition.  I went in expecting to be told that I needed to quit drinking coffee and was told that I would most likely need a heart transplant.  Like you, I got a new Dr. that has a kinder approach.  He has said that a transplant is in the future but does not want to put me on "a list" as long as I am functioning as well as I am.  I have recently started getting a little short of breath and stay pretty tired.  I got an ICD last October after a halter monitor revealed VT.  Did you have the transplant evaluation?  If so, I would be interested in hearing about it.  Hope all is well.