Seeking other liver transplant pts out of state from MAYO JAX

@nusscass- I am just about 2 years post op from Liver/Kidney. I had my transplant at Mayo in MN. Live in NY. I had multiple trips back and fourth. I eventually found my home away from home at the Gift of Life Transplant house. This is a wonderful place to stay if you are at Mayo in MN. I would google them or visit them on FB. The cost a night is $30 and it's you and a caregiver. You share the house, kitchen and living rooms with other patients and caregivers going through the same thing as us. You have your own bedroom and bathroom. It truly is my home away from home and I have made some great friends there and see them yearly on our check ups. I highly recommend them if you are in MN. I wish you the best on your transplant and a speedy recovery when it happens. God Bless!

Thanks so much!! The multiple trips is what I was looking to avoid. I know they will have me staying close as Im getting close to being "called up". Lol! Plus I know if things go well I'll need to stay close 3 mos. We have 2 dogs that would have to come. Plenty of places allow them, but furnished places with shorter leases are crazy expensive
I've tried to g I through concierge. But travel and hotels but no list of the places I've found after searching. I dont want to have to stay in F rated high crime areas to afford to live
Too much income to qualify for a lowered rate but not enough to pay 3+ grand per month for a studio. I not only worked critical care but was a Nurse Care Coordinator. ( NP like a transplant coordinator, just other illnesses.) I could solve any problem thrown. But this has me stumped!!!
Comgrats on your success!!! And for your good wishes. I may bug you again!!! Lol. Thank you!
Cassie

Not out of state but too far away from Jax Mayo for transplant. We intend to rent short term but as you said it is expensive. Another alternative is Gabriel House which is practically on campus at Jax Mayo. It is $40 a night for you and your caregiver. No pets though. You would have to make other arrangements for them.

I had a whole liver transplant in April 2022. The Phoenix Mayo has a very low cost set of communal homes in a beautiful setting. They require that the caregiver resides with you. There is a communal lounge area; you are steps away from the Mayo buildings; they have transportation if walking is difficult. The Village at Mayo Clinic often has a wait list so getting on the wait list is advisable. Best of luck and prayers for a successful transplant, Barbara

Wishing u the best on your new TP journey. I am 2.5 LTP.💚💙

Hi @nusscass I'm tagging a few other transplant patients and caregivers like @nanmargaret @eileenheart @nikkispk @beckyy39 @jedikaiti @mbentley @kowalskik @gingercorless who have experience with Mayo Clinic in Jacksonville, Florida. They can share their accommodation experiences.

I agree with @parrot53 to look into Gabriel House at Mayo Clinic for transplant recipients and donors. Here's more information:
- The Convenience of Transplant Hospitality Houses https://connect.mayoclinic.org/blog/transplant/newsfeed-post/the-convenience-of-transplant-hospitality-houses/

Nusscass, how are you doing transitioning from Critical Care/Trauma RN to now being the patient? That must be ... odd? Challenging? Are you a good patient?

I have liver cancer along with NASH
I spoke to my Mayo social worker and she completed form for me and my wife to stay at the American Cancer Society home on campus at Mayo Jacksonville.
Sometimes it’s difficult to get into. The home is completely free. The place is absolutely beautiful inside

I stayed at 8876 AC Skinner Parkway condos for my 4 week post transplant stay. It was nice. Only about 8 minutes away from the Mayo. Affordable. I needed a TV in my room and living room for my sanity. And the kitchen is your own. It was a nicely sized 2 bed and 2 full bath. Walk in shower in the master was nice. I stayed at The Gabriel House for pre-transplant evaluation. They were great and VERY affordable. But we couldn’t eat in our rooms and didn’t have a private kitchen. I wanted that for the ease of my caretaker as well. I could plop on the couch or recliner with all of my aches and pains and looking like poo without worrying about anyone else in a shared living setting. I’m here if you have any other questions about the Jacksonville process. I’m only 5 months post transplant.

My liver transplant was 19 months ago at the Oregon Health and Science University hospital in Portland. The hospital partnered with the Ronald McDonald House organization for adult patients with major medical situations not in the hospital that the doctors must see often that do not live near Portland (I'm 250 miles away). RMH has 2 stories of a 6 story building used for patients as approved by a hospital social worker for adult patients. Your income isn't considered. First come/first served based on social worker inputs. $50/night. Without that, me and other Oregonians have the same situation you're facing.

How long did it take to get a room?
I am from upstate SC and if accepted I hope to use the facilities.
I have cirrhosis and had been stable. But they found Cholangiocarcinoma (bile duct ca) and due to this rare disease, I don’t have many options.
Mayo is one of the few centers worldwide, that treats this.
I am currently waiting to see if they will accept me.