Heart Transplant for mentally challenged daughter

My daughter is 29 and mentally challenged.  She has been diagnosed with cardiomyopathy since 1996, and her condition has been getting worse since the beginning of this year.  She also has pulmonary hypertension and is currently on IV Milrinone (+ oral meds) to support her heart and (hopefully) bring down the pulmonary pressures.  Her cardiologist (UPMC) is saying it is time to consider listing her for heart transplant, and I am trying to make the best decision on her behalf, since she is not capable of making it herself.  She does not want to have surgery, but she does not want to die.  Her understanding of the actual details is very limited.  I have also been investigating stem cell therapy in Thailand as a alternative to heart transplant, or at least as something to try before making the "plunge".   I would love to correspond with someone who has been through heart transplant to learn more about your experience... and would also like to hear from anyone with knowledge of stem cell therapy for cardiomyopathy.

Thank you. - Marcia (Erika's Mom)

[viennaustria]

Hi Marcia ! I have cardiomyopathy, but well compensated on medication, never got to the point to consider heart transplant. Hope you can get together someone who went through transplant.
I was only reading other people posts and they all were very happy with their new hearts.

Good luck to you and Erika !

[FLBrat]

[FLBrat]

sure would like to see edit and delete options!!

[FLBrat]

I had several (3) doctors tell me the heart transplant route was for me.  I was referred to a great clinic with marvelous doctors.  I now have an ICD, a handful of pills & vitamins, an EF that has almost tripled, and try hard to keep the diet and excercise route.  My health, in my opinion has only gotten better in these last couple years.  I surely hope that Erika and you are able to find a way around transplant, but if it is a must that it is wholly successful.  It was terrifying for me to be told this when I know I can reason and make my own decisions, I wish the best for you both.

[ddavey]

i also have a daughter with cardiomyopathy.    she is 22 yrs old and developmentally disabled, she was diagnosed with cm in march of 05, and like you i make all of her medical decisions as she is not able to fully understand everything.  earlier this year i made the decision to find a doctor out of the university of michigan as her condition was becoming worse in spite of meds (coreg, vasotec, inspra)   we have been lucky to now have some wonderful doctors,  they have added digoxin and her condition is a little better, and we now some new options on how to proceed.  i have feared from the beginning that she may eventually need a transplant, and i can understand how you feel as the parent making these decisions for your "adult" child.  i know that i spent a lot time looking into everything to help her, knowing that there had to be something else out there to help improve her condition.  i don't know alot about transplants, but i understand how it feels in dealing with a challenged adult child and making these types of decisions for them.   i truly hope that you find the best possible result for both you and your daughter.    dawn

[Erika's Mom]

Thanks to each of you - I really appreciate all your comments.  Yes, it is terrifying to have to make this decision for someone else, especially with all of the potential difficulties that can come post-transplant.  If we go through with it, will I feel I did the right thing for her, or will there be so much suffering that I will regret it ???   Of course, no one can answer these questions, but they torment me every minute anyway.  We are generally hoping to find and try ALL possible options before committing to transplant.  Just got off the phone with the people from Thailand - again - going there is very tempting, but scary as well.  Erika did so well on medications for so long (diagnosed in 1996) that I had hoped we would never have to face this.  Stem cells ?  Clinical trial of Heartnet mesh ventricular support ?  Transplant ???  sigh.    Thank you all again.   Marcia (Erika's Mom)