URGENT: Cardiomyopathy and Heart Transplant

[bob]

I have a dear friend who was diagnosed with dilated cardiomyopathy in November. She is 25, in excellent health otherwise, and was very active until this, running 5-10 miles every day. Her cardiologist wanted her on medications immediately but she delayed and did not begin treatment. Two weeks ago, after swimming she began to experience chest pains but did nothing about them for four days until she was in severe distress. She was taken to a cardiac care unit where they stabilized her did a cardiac catheterization. The cardiologist there told her she needed a bypass to give her enough time to obtain a transplant. He also told her that, based on her condition, she had less than a 50% chance of surviving the bypass.

She has still not decided what to do and seems most concerned about her quality of life and life expectancy after a transplant. I have read the few statistics available but need to know what the implications are for someone so young having a transplant. I am trying to show her than any chance is better than none. Any information you can provide would be greatfully appreciated.

Bob

[brian]

I have been diagnosed with idiopathic dilated cardiomyopathy and am 54 years old. My ejection rate when I left hospital in late November 1999 ( Had been admitted ccu for heart failure) was 27.
I have just had another echo (march 2000) and don't see cardiologist until April 2000. My echo result was ecjection rate of 24. Any comments on longevity, further actions necessary would be appreciated

[Bob for Lisa]

Thank you again Lisa. I share your hopes also, but the grieving has been going on for a couple of months, and I fear she will never get past it. I just try to be supportive and pray she decides to try to live. I wish I knew how long she has before it is too late to do anything. She said again the other day that she would take the risk of treatment if they would tell her she would be as she was...she says she just wants her life back, she wants to be able to have children, and all the other things that were ahead. It breaks my heart every day.

[Lisa for Bob]

I'm very sorry to hear that.  I know it must be very frustrating to have someone you care about unable to go forward with treatment.  I truly do feel for her.  I have thought about her very much since reading your posts.  My hope is she will go through grieving the loss of herself as she has known herself, then have the courage to try to live.  I know I grieved for at least a year when I found out about my and my sons cardiomyopathy.  Best of luck and take care.

[Bob for Lisa]

Thank you Lisa. I have tried to get her to talk to someone but she has decided that, if she cannot be as she was, then she does want any treatment. To her, the risk of the bypass surgery (less than 50-50 in her case) to even get to a possible translant is not worth it. Plus, they have told her that, due to recent changes in policy, she would not be high on the list for a transplant because her condition is too bad. I had hoped with her young age (25) and overall health, she would be high on the list. So, she just gets through every day as best she can and waits.

Thank you, though, for your sincere interest. I am in the "hope for a miracle" stage at this point. All my best to you.

[Bob, Please Read!]

Bob, please read my response above.  I am Lisa.  Please convey this information to your friend.  There are lots of transplant recipients who are willing to talk with people who are ill needing a transplant.  My Dad has spoken to many and eased their fears.  Check into that.  I know my Dad would even talk to her.

[lisa]

Hi Everyone,

I have responded to several of the postings on this site.  Hope I'm not annoying anyone too much.

My father underwent cardiac transplantation 11 years ago due to dilated cardiomyopathy which led to end stage heart failure.  He is still with us and doing very well.  From what I have seen and heard (my next door neighbor is the transplant coordinator at a hospital in my city) and due to my father's outcome, I believe transplantation is a very desirable option for those suffering with a failing heart.  Yes there are risks with the potential side effects of transplantation but it can certainly return a person to a quality of life had prior to illness.

I have the same condition that my father did as does my 12 year old son, my sister and her little boy.  I would not hesitate to undergo the procedure if my condition were to worsen.

I hope your friend has done well.