General
Transplant Centers Post-Transplant
Updated November 13, 2023
in General
Which transplant center did you use? Do they still manage your care in any part? When is it best to use them instead of your other doctors?
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1 - 7 of 7 Replies
I am in San Diego and use Scripps. I try to keep all of my appointments that are outside of the transplant team within the same hospital system. So, I can keep everything all in the same place. And other doctors can see the transplant team notes quickly. Over the 18 years of having a transplant, I ALWAYS run everything any other doctor says or recommends either by my Nephrologist or someone on the transplant team. There are a few times over the years that I have been prescribed something that I wasn't supposed to take. Sometimes it's impossible for us as patients to remember every little thing. I wonder if my doctors get annoyed that I either call or ask through the portal so many questions. But I think it is so important that we remain our own advocates and really double-check everything.
As much as I love my primary care doctor, most of the medications and immunology are just a bit too much for my primary care doctor. Often he has never heard of the medications that I take. I wish we had special primary doctors who specialize in transplant care. I kind of use my Nephrologist for that.
Jeanmarie,I to have my Drs. all at the same place I had my TP. I am very fortunate to have a PCP who is familiar w/TP patients plus he was highly recommended by my TP team. We have a very good relationship, he is a great listener/ communicator.
This is a great question. I am six months post transplant and realizing how safe I feel at this facility. The only downside is that it’s like a whole days trip just to go to one appointment so i’m in a space where I have to decide how I’d like to move forward with the rest of my healthcare.
Transplant Patient
Such a relevant question @coopscadoop !! Most of us probably want to stay w our drs at the center but centers are overwhelmed w all the patients and cannot attend to everyone. No one is really managing the totality of our condition…
Transplant Patient
I do everything at my transplant hospital still. At 1 year I was moved from the active transplant part of the program to post transplant hepatology, but it’s all still connected. I needed to see GI a while ago and saw a post transplant GI, and all my other specialists are in pretty consistent contact with one another. Like @fern22 my centre is a drive but I love it there, and it’s in the same town where my parents live so it’s always a good excuse to go visit! The only doctor I have not at that centre is my primary care doc, and she’s also constantly checking in with my transplant doctors. It’s a team effort 😅
Transplant Patient
Yes that is how we all want it @AliEm14 but when centers do hundreds of transplants a year it starts to get hard for the nephrologist or hepatologist to manage it all.. I wish we had a solution but perhaps it is the super PCP who can become the spider in the web, together with some very good tech to remind us of all the appts needed?
Transplant Patient
@Karin absolutely! I realize how privileged I am to be in the position I am. That’s actually what prompted me to work in a field where I get to bring holistic health and supportive care options to other transplant recipients. We need better for everyone!