Seeking other liver transplant pts out of state from MAYO JAX

Are you looking for hotels or somewhere else? I've been an RN 33 yrs
Wjen traveling for assignments I use a site for furnished, all inclusive places
Try Furnished Finders
Apts. Condos, rooms in shared homes and housed
Check against crimegrades maps!
The owners are usually in healthcare
Shhhh its a secret! Lol

I wish the best that you will get into Mayo very soon..

Hi! I’m waiting on a liver transplant and have my week of evaluations next week to see if I will be listed at Mayo Arizona so I will post my experiences!

I’m from AL too!

Hi nusscass,
I live in SC and have cirrhosis from Hemochromatosis and Polycythemia Vera likely with NASH as well. Who knows…. My GI doc is old school and retiring soon but says it doesn’t matter how you got here, but here you are.

Anyway, I have also recently but diagnosed with Cholangiocarcinoma (NOT GOOD)!! And I had been with the Atrium Health program for the last 13 yrs., but with this new complication, they can’t perform transplant.
I was sent to MUSC in SC and they evaluated and once we left, have not heard a single thing from them.
Came to Mayo JAX, and Dr. Majeed with Oncology met with me and my wife. That day they did MRI, MRCP, Labs, and then CT of chest the next morning.
He has presented me to tumor board stating the Transplant surgeons also attend that.
We are still waiting on a response if I will qualify for their program as they are one of the few programs to transplant someone with Cholangiocarcinoma.
We were told I would have to stay there 5 weeks for chemo and twice per day Radiation, if I am allowed to enter the program.
I have looked into the places you recommended as I am trying to be proactive in case they call and say come back.
BTW… I am also a long time RN as is my wife.

Hello @jshirley, I know you’re focused on whether or not the liver transplant is a possibility. With your latest health concern I certainly hope that this will be a possibility for you too. As an RN you dedicated your life to helping other people so now it’s your turn to receive a gift of life.

I’m not sure if you’ve looked into these discussions in the forum related to Cholangiocarcinoma but I found a few conversations that might be relevant for you and where you can meet other members who have experience with this rare form of cancer.
Cholangiocarcinoma and proton and photon beam radiation

https://connect.mayoclinic.org/discussion/cholangiocarcinoma-2/ with member @edie78t
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Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this? https://connect.mayoclinic.org/discussion/cholangiocarcinoma-bile-duct-cancer-anyone-else-dealing-with-this/
@tball3748 @edie78t

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Diagnosed with cholangiocarcinoma, can this be treated?
https://connect.mayoclinic.org/discussion/diagnosed-with-cholangiocarcinoma-can-this-be-treated/
Posted by @suchita90 @gstoreydothan @jalewallen74

I am confident that you’re in the best hands possible at Mayo…being a little biased. But they gave me a new life and it remains a place of hope! Let me know what you find out, ok?

Thanks Lori. I needed that and have reviewed each link.
I think knowing the diagnosis and its aggressiveness and the statistics with likely outcome, I want to start this fight. I have too much to live for to give up.
The docs I have in my area have been Frank with me which I like. They have expedited procedures and even my Charlotte Transplant team have informed me to get into a program ASAP. This was diagnosed in April and still I have no plan of treatment.
I have researched and Mayo has best outcomes for my situation “if caught and treated early” per Mayo statement.
I just want to make sure I am in the right group as oncology is who consulted with me. I reached out to the Transplant team and they knew noting about my case. I guess there lyes my frustration.
But I am letting it go and know Gods will is in my life and has always been faithful to me.

I want to invite @lisamb, @crystalfaye
I want to introduce you to @jshirley who has been diagnosed with cholangiocarcinoma and will need treatment before qualifying for a liver transplant.
What would you share with her as she awaits appointment and chemo and radiation? What was your experience as you progressed toward your liver transplant?

We purchased a condo on BAYMEADOWS rd. Got what we wanted in location, ground floor, end corner unit under trees and next to pool. Close to walk into parking to our door. Pets cost and HOAa reasonable. We paid dearly for it. But we have been happy for our visitors, family and pets we have. And the community neighbors have welcomed us like family. We move here in June2023 and kept our place in Ky. Last week I got the call to come in 5 hours later I was in Mayo Jacksonville being prepared for the liver transplant. In September I would had my exception points and was getting ready for more test in 20 days. But I was fortunate and got in way more early than expected with meld at 16.
We hope to recoup some expenses on sale or yearly rental. But we like it so much now we may keep for a second home. If financially we can make it work.

Living in Ky We looked at many options. My liver NASH also had cancer and going through social worker assigned to me completed form , we stayed for as long as possible at Hope Lodge ran by the American Cancer Society. They are so busy it somewhat difficult to get in quickly. We made arrangements as soon as we found we had appointments. That’s no guarantee they will have a room but free great stays in a new lovely environment it’s the best. No pets, smoking or visitors.
I would keep calling or they call me saying I can choice to stay certain dates. You may leave to courtyard Marriott for 90 a night and if something open you can go back to Hope.
We started at hotels and Hope during my test a treatment for liver cancer.
We looked at corporate apartments furnished at 3-6 thousand a month.
We looked at apartments around 2500 a month Recommended the Cove. We hired a realtor and started looking at houses, condos.
Being out of state we depended on them but found what we like, on Zillow for sale.
Flew to see one place and agents did not disclose it was full of mold that showed up on inspection we paid for.
A few weeks we seen online a couple places we liked. We started a contract and inspection on a condo on BAYMEADOWS rd. Local to Mayo Jacksonville, corner floor 1200 sq ft. With patio, direct parking to unit. Pool next door. Pets a small fee, HOA reasonable. We looked like the Beverly Hillbillies moving in 3 months before getting exception
Points. Didn’t bring but much only a small uhaul trailer. Furnished the place from local thrift shops, shara furniture discounted. We are happy we did because after being here for a month I got the call Sunday 2am to be at Mayo Jacksonville er early in the morning. Our neighbors are the best. Anything else I can do to help you are anyone wanting to question their opinions I’ll be glad to help.