Where and how I can look for good specialists in transplant?

Posted by echo2022 @echo2022, Feb 9, 2022

I just moved to California, so I want to connect with other patients here. I want to know where and how I can look for the good specialist in transplant hepatology in southern California. We have social groups on WeChat in China and patients can get more support and messages there. For example, If you travelled to a city and forgot your medicine, the patients who you don't know would help you and take the medicine to you. Sometimes we also meet other patients in person. Are there the similar groups here?

Interested in more discussions like this? Go to the Transplants Support Group.

@echo2022 Here is the link I sent you in the other discussion. You can see by the graph, which transplant centers in the Los Angeles area indicate they do liver transplants. I am pretty sure any of these locations would have patient support groups, that meet at least by Zoom if not in person. And there is always Mayo Clinic Connect here! Here is a discussion thread about post liver transplant support: https://connect.mayoclinic.org/discussion/want-to-connect-with-other-post-liver-transplant-patients/
https://www.onelegacy.org/about/area/centers.html
Ginger

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@echo2022, I wanted to take a few minutes to check in on you and ask how things are going for you since we last connected. I do hope that you are doing well. I see in your profile that you received your liver transplant in 2008. That makes you a year 'older' than me! I got my liver and kidney in 2009. I am planning for my annual evaluation inn late May.
How about you? Have you found a transplant / liver specialist yet?

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@rosemarya

@echo2022, I wanted to take a few minutes to check in on you and ask how things are going for you since we last connected. I do hope that you are doing well. I see in your profile that you received your liver transplant in 2008. That makes you a year 'older' than me! I got my liver and kidney in 2009. I am planning for my annual evaluation inn late May.
How about you? Have you found a transplant / liver specialist yet?

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hi younger sister. I'm glad to hear from you. I made an appointment of specialists in April and May. It seems that I also need to take annual evaluation here. What is it usually including?
I take tacrolimus 1.5mg twice every day. The medicine level is 4.1 or so. I'd like to know how you take it.

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@echo2022

hi younger sister. I'm glad to hear from you. I made an appointment of specialists in April and May. It seems that I also need to take annual evaluation here. What is it usually including?
I take tacrolimus 1.5mg twice every day. The medicine level is 4.1 or so. I'd like to know how you take it.

Jump to this post

Hi Younger sister. I'm happy to hear that appointments are set for April and May.
I have a liver and a kidney transplant. I got both at the same time: one surgery, one donor; two organs. I was initially a patient in Kentucky, but complications developed and I was transferred to Mayo in Rochester. I am aware that there are some variations to follow-up care at different transplant centers.
I have routine labs drawn locally every 3 months. My primary care physician (PCP) monitors my health locally, and he is in contact with Mayo if necessary. It is a coordinated effort that works well for me. I also keep up to date with my prevention screening locally (mammogram, annual physical, colonoscopy etc).
My upcoming annual evaluation, at Mayo, will include: blood tests (labs) and urine sample; a 24 hr urine sample; medical review and consults with both liver and kidney dept; EKG; chest X-ray; abdominal ultrasound; Dermatology check; Renal Function . Every 2 years I have a bone density scan.
As for my tacrolimus and my mycophenolate, I take them every 12 hours. My reminder is set for 8 AM and 8 PM, which is the most convenient time for me.

Will both you and brother be having appointments? Are you a transplant recipient, too?

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