Liver
Does your transplant coordinator keep in touch with you?
March 23, 2021
in Liver
I am curious know how does one manage the post transplant journey, specially those who are now transplanted 3-4 years back, who is your primary care provider? Do you get to talk to your transplant surgeon or the team that looked after you in the initial months before and after the transplant.
Who takes care of your when you face side effects from the medicines?
In different countries there are different care models, but all transplant patients face this challenge of life long management of Tac dose and the need to take of their new organ.
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Transplant Patient
I’m 15 years post liver transplant, and I am managed by the post-transplant hepatology team.
They are the ones who monitor my dose changes and blood results, as well as my yearly checkups.
@brookegurrad so 15 year of care continuity, that is great. Hope you are doing well and apart from the daily meds, no reminders of the transplant.
Transplant Patient
I’m not quite a year but I am also managed by post transplant hepatology. From what I know the coordinator I have will always be my coordinator (unless he leaves and I get a new one) and we talk almost weekly, but that will become farther apart the farther I get from surgery and the more stable I get
I’m 17 years post my heart transplant. I am followed by a post transplant team. I was transitioned to a post transplant coordinator after my transplant. She handles a lot of my needs post transplant then I see the doctors every 3 to 6 months.
At Hopkins where I received my transplant, once you hit the one year mark you are transferred from your post-transplant coordinators to hepatology. The hepatologists still work very closely with the transplant team - my hepatologist was actually finishing up her fellowship while I had my transplant, and treated me in the hospital. She is great at communicating and I feel very confident that I'm being well taken care of. However, my transplant coordinator made it very clear that she and the rest of the transplant team were always there for me if I ever needed anything.
@meghansmith @ChefAmanda @AliEm14
Great to hear your experiences. Yes transplant coordinators are absolutely critical in the transplant journey.
Transplant Patient
In my house we jokingly call my coordinator my boyfriend because I spend so much time talking on the phone to him. I feel like even if he wasn’t my coordinator I’d still want to talk to him as a friend. We’re bonded for life now, he can’t get rid of me that easy