Switching Transplant centers for post transplant care

Thank you I wasn’t quite sure why she recommended a Nephrologist and thought maybe she was misunderstanding my transplant and should have asked. My team called and never got a returned call and told me I should try myself and follow up. So is there a specific number I should call and request a Hepatologist and Primary care Dr?

I had a Liver transplant - actually two - A few days after first transplant something went wrong I think a clot in main portal or something caused some skewed numbers so. I went through tests and eventually opened back up to explore and fix. I came too hearing my wife be told I was going to be relisted and several days later and another transplant and a few days later I had another surgery to check everything out and close when swelling started to recede. My first transplant was Aug 5 and I was home by Aug 30th 🙏🏽❤️

Hi @edwardwallace. Wow! 2 liver transplants in such a short period of time is a remarkable accomplishment - for you, your wife, and the transplant team! what a miracle - plus knowing that you are doing well and enjoying biking and hiking, too!
I'm running late on making replies here on Connect because I have just returned home from my 15th annual post transplant check-up at Mayo Rochester. I received a simultaneous liver and kidney transplant in 2009. As Colleen mentioned, I get my follow-up care at a distance from my transplant center. In fact it is 799 miles (one way) from my home in Kentucky! It sounds like we are/were 'almost' neighbors, however I live near Lexington.

I became a patient at Mayo after a referral by the UK liver transplant dept when complications developed due to my Primary Sclerosing Cholangitis (PSC). And, I even spent 5 days at the UofL hospital Transplant floor when I developed sepsis 14 years ago and was treated there with the UofL doctors communicating with my Mayo transplant team until I was stabilized and able to travel to Rochester. It was intetesting that the UofL team would not attempt any kind of invasive procedure on me, unless it was a life-death necessity - because my transplanted liver and kidney belonged to Mayo. The good news is that I did stabilize and went to Rochester where a surgical hernia procedure was performed. For me and my husband, distance follow-up is working well.

Edward, I would like to suggest that you contact the Liver Transplant Center. You will be able to speak to someone who can direct you and your current trancplant center about how to proceed.
Here is contact information:
Arizona
-Call
800-344-6296 (toll-free)
8 a.m. to 5 p.m. Mountain Standard Time, Monday through Friday
-Email
ARZTransplantCtr@mayo.edu

I'll be headed to the Great Smokies in a couple months for some hiking with husband. Have you been there?

@edwardlwallace
I had my liver transplant 1 year ago at USC Keck in LA. I reside in Phoenix and get my follow up care from Banner University. But I am free to call Keck transplant coordinator with any questions and concerns. However, my Dr at Banner has been wonderful!

thank you - I am trying to contact Banner to get in for Hepatologist and how they want to proceed with my follow up care.

Ed

Yes we have I was on the Board of Directors for Blue Ridge Assembly for several years. We also hiked in Cherokee area.
Rafted / biked down Mt Mitchell and toured Biltmore Vanderbilt Estate in Ashville I highly recommend doing it and the gardens.
We are headed to Lexington Next Thursday for NCAA DI regional track meet Wed - Sunday then head over to Lake Barkely where our daughters have lake houses. They moved to Nashville after college and work there or out of there.

My liver transplant was done at Oregon Health and Science University in Portland in Sep 2021. I'm doing quite well post-transplant. I'm moving from here in Oregon to probably Prescott AZ later this year or early next year. My son in Cave Creek (horse vet) is getting married to another vet and they asked for help with daycare for the immediate family they want to start. Having no grandchilden, of course we're going to be near since they asked.
I'm assuming I can transfer my liver care to Mayo?

@johnnoregon there was another discussion similar to yours where a couple of members were wondering the same thing (transferring transplant care from another transplant center to Mayo). I think the general consensus is that it is possible.
Two things come to mind. One is that you are moving to the area and relocating is a valid reason for wanting the change. The other thing is that you might find it helpful to enlist the help of Oregon Health and Science University Transplant Center to send a referral to Mayo Transplant Center in Arizona. They can pave the way by explaining your circumstances and can send your health records. You might find this helpful in getting established with Mayo.
I’d like to share my own story. I had a pancreas transplant (going on 19 years ago) at a Transplant Center other than Mayo. I was satisfied with the pre-transplant evaluation and thrilled with the transplant. Over time I felt that the follow up care was inadequate. At about 11 years post transplant I was in need of a kidney pre- transplant evaluation. I turned to Mayo, MN. I was evaluated, approved and accepted for kidney transplant. My team has been helpful in making recommendations regarding my pancreas post transplant care BUT they are fairly blunt about the fact that this is “not their transplant”. I’m technically on my own with the care of my first transplant. Yet they have collaborated with my local providers (endocrinology and nephrology) regarding my care. I trust them completely and I’m inactively listed with them for kidney transplant. The listing is inactive because I’m not quite bad enough for active listing.

Thanks, Cheryl. I get what you're saying. They didn't perform the surgery and liabilities can be substantial. I'll start with OHSU first, and see where that takes me. I would like to get access to both a GI doctor and a hepatologist at Mayo, which I'm sure won't be a problem. If I read correctly, you aren't in the zone yet for a different kidney, and I hope you can stay free from that for life.

@johnnoregon My husband had his kidney transplant October 2016 at Scripps Green Institute near San Diego [CA]. When he relocated here to Oregon May 2020, his annual review was moved to Legacy Good Samaritan in Portland. It was a simple authorization for release of records, after confirming they would be willing to take over his case. We are forever grateful for his donor, the care he received while working with Scripps. The first year he did actually return to San Diego area for his annual appointment, but then transferred things up here. The 6 hour trip to Portland is much easier than the 18 hour drive to San Diego! Of course, you could use that annual review to re-connect with friends you are leaving behind in Oregon, if you'd like.
Ginger