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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?
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.
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…
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 😅
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?
@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!