Heart failure

[armst017]

I just learned from a recent echo that my ejection fraction is 40%,
indicating heart failure.  Has anyone else had this?  I'm
pretty freaked out...  Anyone had double lung heart transplant
because of this?  Is there any other way?

 

[EnergyGal]

I have heard of many double lung transplants being accompanied by a new heart. Did your doctors say you need a new heart with new lungs? If so, I think you should write to Joanne who knows many heart tx who also had new lungs. Check her out under transplant section. I wish you the best

 

[armst017]

Thanks, Risa--<br>
Just your reply makes me feel less alone.  I wanted to find
out how common the heart failure thing is.  How low the
ejection fraction is before they transplant, stuff like that.
 My PFTs are pretty good.  It will be several weeks
before I can get in to see anybody about this, and I'm
(understandably, I think) quite anxious about.  Should I
exercise at all?  I'll try to find Joanne...<br>
thanks again,<br>
Victoria 39y/o mother of one.

 

[Marjolein]

Hi Victoria, sorry to hear you have to go through this. I hope you can find the answers you are looking for though i can't give them to you.

I can give you the link to Joanne's site. There is a guestbook there. <a target=_blank class=ftalternatingbarlinklarge href="http://groups.msn.com/TransplantSupportLungHeartLungHeart">http://groups.msn.com/Transpla...portLungHeartLungHeart</a>

 

[IG]

Random information:
<a target=_blank class=ftalternatingbarlinklarge href="http://en.wikipedia.org/wiki/Heart-lung_transplant
">http://en.wikipedia.org/wiki/Heart-lung_transplant
</a>
Random trivia: They also do 'domino' transplants. That's where they take the heart/lung together and transplant it into a CFer who has a perfectly healthy heart but crappy lungs. They then take the perfectly good heart from the CFer and retransplant it into somebody who needs it. Why is this done? It is a technically easier operation to replace the heart and lungs en bloc.

Also contact Joanne, that's probably your best bet besides talking to your doctor.

 

[luke]

Many people don't realize that "normal" ejection fraction is not 100%. I was initially taught that 65% was normal but now the range varies from 55% to 75% I think. So even though you aren't within normal ranges you are off 15% rather than 60%....just trying to help with the silver lining.


luke