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Asking for feedback on your healthcare experience

Hello, 

My name is Tara, I am a post-heart transplant coordinator at Allegheny General Hospital in Pittsburgh. One of our biggest roles as coordinators is education. I work with a wonderful group and think that we are doing some of the best work in transplant. However, due to the limited research on the transplant coordinator role I would like to ask everyone what we can do better. No holding back! I'd love to hear everyone's critique, your words and advice will help future transplant patients. No matter how grateful you are, or how wonderful your team is, I'm sure that you still have valuable advice for how we can improve. In the end my goal is to produce an app that will be given to everyone once they are made 1A status. It will guide them through the post-transplant life by reinforcing aspects of their care that are necessary for health maintenance. 

Specifically I would like to know about your pre/post transplant education experience. 

Is there anything that you wish you knew more about?

Did you have any complications that you feel could have been prevented through better education?

Did you feel prepared for everything? How much education did you receive? 

Was there something in particular that you found especially helpful?

Please feel free to elaborate on these questions and talk about what hurdles you had to overcome due to inadequate education. I would love to hear from you!

And while we are at it, please give all general advice, what can we do to be better overall? 

Thank you!!

And for everyone waiting, hang in there- you never know when you will get the call. Best wishes to all, we all are working hard to promote transplant awareness!

Thank you,

Tara

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Replies

  • Hi Tara!

    I think it so cool what you are doing :)

    I had my transplant 1 year ago at the Children's Hospital in Wisconsin. I am 19 now, but I was a status 1A after my first transplant. So I can only give you some insight into what my experience was like from a preemptive transplant point of view but here we go. 

    I was very unprepared for the experience, and it was mostly my fault. I had one full day of education from my coordinators and most of the education came after the transplant because it was so unexpected. I really wish I would have realized how serious a transplant is and that there are many factors that go into it. Ordering medications, and making appointments, being responsible for the gift you receive. I wish I would have been forced to meet with a psychologist more regularly before my transplant as I found myself shutting down emotionally during the recovery just to deal with the physical repercussions of a suddenly failing liver. So, that's mostly a regret on my end. Other than that, I think that transitioning to adult care has been the most difficult thing for me. I turned 18 while I was recovering in the ICU, so my dad signed the consent forms for the transplant and I signed everything after that. The hospital tried to make it as easy as possible on me, but I wish I would have had a class for transitioning into adult care. Like for medications especially, how to order them, and how insurance works with all of that.

    For younger recipients, I think a adult care class could be a very valuable tool!

    Thanks! 

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