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Liver transplant - Let's support each other

Transplants | Last Active: Jun 22 9:17am | Replies (1606)

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@mbentley

Thanks. I did get approved this morning. I received the information as you said on Er.

I need the tumor treatment with ablation soon. I hope to stay at Hope Lodge. It’s a new building and get inside.

We are looking at condos within 15 min drive.

We hope to be living in Jacksonville in July.
Thanks for the information.
I have never seen the hospital rooms. Were they nice? Did your caregiver stay with you?
How was the care? Did you feel they neglected you? I’ve been in hospitals and I push the call button and had them say, were busy we will see you when we can. I hope Mayo Jax is better. I’ve been looking for room pictures but could not find.

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Replies to "Thanks. I did get approved this morning. I received the information as you said on Er...."

I was transplanted at Mayo Jax about 1 year ago. The place is amazing. I relocated from Boston as my odds for transplant were much better here. The facilities here are relatively new (about 25 years) and immaculate. The campus is beautiful, with gardens, art installations, fountains - it embodies the Mayo philosophy of healing the “whole patient”. All patient rooms are single rooms and state of the art. I am so grateful to the care I received that I now volunteer on the Transplant floor each Wednesday as a nurse’s aide.
But my wait was complicated. I was treated at Mass General for over a year before being advised to seek treatment here in Jax. It took me just about 2 years from diagnosis to transplant - but my condition was very rare, so there were no statistics or protocol at UNOS for prioritizing patients with my condition. There are lots of local housing options here, and I found that my health improved while I waited simply by being in the FL sunshine. I would encourage you to join the weekly support group calls (each Tues at 11am via Zoom). You will meet many post & pre patients who have been down this road and can help allay your fears and answer any questions you might have about their experiences and treatment for similar condition as yours. Many patients get listed and receive the call not long after. That was not my experience. Between Mass Gen and Mayo I received 7 calls. They come any time of the day or night, so keep your phone with you and answer every unknown caller. My 7th call came at 1am on a Sunday night - and the 7th was the charm. Happy to speak privately with you or meet you and your caregiver when you arrive in Jax. We have a very large and supportive community here - so you won’t be alone.

This is GerryP’s wife. I did stay in the room the first two nights after transplant so that I could reassure him all was well when he awoke, and re-orient him to the room, as he was experiencing drug disorientation. The nurses are incredibly responsive, particularly in the early post-transplant days, and they work as a big team, in that if they hear you beeping and your nurse is busy, they pop in. Once he was more oriented, I started going home at night. There is a lot you need to learn and be responsible for in the beginning months, and you need to be rested. Mayo was great with patient education, I felt supported in my learning, and had a team to reach out to for questions. Try to find an apt close by, as in the beginning you go back and forth a lot. We are by the beach in Ponte Vedra, and it’s an easy drive. Like Gerry mentioned, we are happy to answer any and all questions offline.