Liver transplant - Let's support each other

@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?

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.

Hello,
My name is Susan and I have been diagnosed with cirrhosis and HCC. My current question is what is the age limit for a liver transplant at Mayo Clinic in Florida? Current requirements to qualify for a transplant, how distance from the facility affects patients order for transplant, and current exception points/requirements for patients with HCC.

@desouza, Is this the information link that you intended to send? https://optn.transplant.hrsa.gov/

You are absolutely correct. The Organ Procurement and Transplantation Network the top resource for transplant information and policies.

Welcome to Mayo Connect and thank you for sharing from your own experience. I am going to grab your closing message to @parrot53 and say to you, "Good luck in your journey!"

Please know that on Connect, others have walked or are currently walking that journey. Waiting can be a long and lonely time. On Connect, you are never alone.
Have you already had to wait 6 months to meet the criteria and points that you have mentioned? Are on the active waiting list?

@desouza, Is this the information link that you intended to send? https://optn.transplant.hrsa.gov/

You are absolutely correct. The Organ Procurement and Transplantation Network the top resource for transplant information and policies.

Welcome to Mayo Connect and thank you for sharing from your own experience. I am going to grab your closing message to @parrot53 and say to you, "Good luck in your journey!"

Please know that on Connect, others have walked or are currently walking that journey. Waiting can be a long and lonely time. On Connect, you are never alone.
Have you already had to wait 6 months to meet the criteria and points that you have mentioned? Are on the active waiting list?

Hi Susan, I also have cirrhosis/HCC. I’m 66 and pre transplant, waiting for “the call”.
The eligibility criteria T2 it means 2 or 3 tumors smaller then 3cms or 1 no bigger then 5cms.
Also the limit for your AFP is up to 1000.
You have to wait 6 months after have been approved by your Center to be able to get the exceptions points. You can find a lot info @ Optn.org
Good luck in your journey!!!

Hello,
My name is Susan and I have been diagnosed with cirrhosis and HCC. My current question is what is the age limit for a liver transplant at Mayo Clinic in Florida? Current requirements to qualify for a transplant, how distance from the facility affects patients order for transplant, and current exception points/requirements for patients with HCC.

Tylenol and over the counter medicines for transplant recipients is something that many of my nontransplant friends do not understand. Although they have the best intentions, they have occasionally given me unsolicited advice. Has that ever happened to you? I am extremely thankful for this Mayo Connect online Community where we can openly share, support, learn together while always adhering to the advice of our own transplant team.

@marilynwhitlock, I am so glad that you brought up the question about Tylenol to the attention of this group! I don't know how long ago you had your transplant, but you are absolutely correct to ask questions when there is any doubt or uncertainty.

I had a recent experience that I want to share because it relates to this topic. 2 weeks ago, on a Sunday morning I went to my local ER due to a quickly rising temperature and intense shivering. . Since I was a transplant recipient, I was immediately tended to (I had called in advance, and surprisingly the ER was not busy at 6AM) I was given IV Tylenol to bring down 103 fever, and had all kinds of lab tests that all came back negative according to the doctor. When the discharge nurse removing the IV and getting me ready for discharge, she told me that I could continue to take Tylenol, or - Motrim (for some leg soreness from previous day yardwork). She acted surprised when I said no to the Motrim, I did not consider her to be qualified to tell me that, plus I did not need it.
@kathycaudle, @jerrynord, @silverwoman,@marilynwhitlock @ronromo - Has anything like that ever happened to you when being seen by a nontransplant health provider? How did you respond?