Liver transplant - Let's support each other

Yes, relocated to Arizona since End of august

Thanks all. I am not going to qualify for a transplant unless my tumor grows. It has been stagnant for over a year. I am glad to be in relatively good health since I cleared Hep C. It is amazing to read all your messages and see how well you are doing. My best to you all. I understand from your message that one has to wait six months before exception points are valid.

Hi Susan...my name is Kathy. I also had non alcoholic cirrhosis and liver cancer. I was diagnosed with NASH in 2014 and liver cancer in 2016. In 2018 the tumor had grown enough to treat. The only treatment was a transplant. I live in California, my insurance company doesn't do transplants and they felt I would not live long enough to get one in California..so they sent me to Mayo Jacksonville. I received my life saving transplant in Nov 2019. I was placed on the active list... I was 70 years young, had 5 tumors that had been treated with chemo, the TACE procedure 2 times, varies treated.
The blessings I received from the Mayo Clinic were miraculous. The entire staff are exceptional. They made me feel as if I were their only concern. Two years later, I'm doing great!!! I thank God every day for His blessings, the Mayo Clinic and of course my donor. Hope my story helps you...blessings to you.

Thank you so much, Kathy.

Hello from Gaylene. I am now 20 months post liver, reflecting on the journey so far. I have a question - did any of you use airbnb.org for lodging pre-post transplant? Since we live 10 minutes from the Phoenix Mayo I was thinking of signing up as a host (unlike airbnb.com neither the host nor airbnb charge for the stay). I can’t imagine having to pay for a hotel while waiting for or recovering from surgery on top of all the other expenses. I’m looking for feedback.

@gphetteplace - Gaylene, Congratulations on receiving your liver transplant. Your generosity is commendable, and it sounds as if you are doing very well with your new liver.
I had not heard of the airbnb.org, so I looked it up. My observation is that the focus, currently, is on larger scale crisis situations. However, I did see that there is mention of providing lodging during long individual medical treatment. Do you know whether that approach is available currently?

I was fortunate to stay at the Gift of Life House at Mayo in MN for aprox 13 weeks. I see that the Mayo AZ has The Village at Mayo Clinic, an on-site hospitality house that provides a low-cost, extended-stay lodging option for families of out-of-town patients who are receiving transplant or long-term cancer treatment. During the transplant evaluation process, the transplant social workers offer information for housing for those coming a long distance.

Gaylene, Have you communicated with anyone at airbnb or about your desire? What would you have to do to be qualified/approved?

Hi Rosemary! I haven’t yet. I’m hoping there’s a preference you can set for who you host, but i haven’t gone far enough in the registration to find out. I was hoping for some feedback first. I think the Mayo hospitality house is ideal, but it looks really small for the number of transplants they do here. What do patients/families do if it’s booked? We have two bedrooms and a nursery/toddler room so we could host a family. Does the hospitality house support that? I realize now how blessed we are to live so close. Would like to do what we can to help someone else.

Hi Gaylene, my name is Bryan and I’m finishing up testing to hopefully get listed. We live in California but are planning on choosing Mayo Phoenix. Our coverage provides lodging at a place like the Residence Inn in Scottsdale but we are thinking about the option of an Airbnb so I’d be curious to know what you learn.

To everyone, hello! My MELD is at 26 right now and I have a few tests left but hoping based on what my transplant Doc says to get out there soon. We shall see. Regardless, I’m thankful to find this group to learn from. My Wife is a medical professional so she helps me understand the numbers and tests, but the actual experiences from all of you are a found blessing. So thank you.

Welcome to Connect @btg! I had my liver transplant in August 2020. I discovered Connect about a year ago. It’s a remarkable supportive community. Sounds like you’re in good hands with your wife, though!

As you continue along your journey feel free to reach out, ask questions, share your concerns, etc. We’ve been where you are! I know I’ve learned a lot from the Connect community. There are many beneficial discussions and blogs in the Transplant Group.

Have you met with your Mayo Transplant Team yet? Or, is this your first trip?!

@brg, Hi Bryan, welcome to Mayo Connect. I hope that your testing will soon be finished and that you can get on the road to Mayo where you can learn if you will be a candidate for transplant. My transplant was in 2009 at Mayo Rochester. I know from my experience with Mayo transplant team that you will receive expert care before, during, and after your transplant.
You mention that your transplant Doc says to get there soon. Is your Doc at Mayo? Are you scheduled for an appointment yet?