How, when, where do you start the liver transplant process?

@shacquie
It took about six months. All the testing took 2-3 months, then I went to Mayo Clinic in Arizona for a week where they repeated many of the tests to confirm my diagnosis and determine if I was a fit for their program. A week after I got home, Mayo called me and said that I was now in their program and that I should come right back to Phoenix and settle in to wait. I was there two months before a match was made. Because of some challenges I stayed in Phoenix for two months after the transplant.

Waiting in Arizona was a challenge, especially in the summer, and we were tempted to go back home to wait. I live six hours away. But our dedicated nurse strongly told us that would be a mistake so we stayed. When I did get the call, the liver was already in route and I was told to get to the hospital in half an hour. What a relief that was. Waiting is really hard--your life is basically on hold.

@pgruetz
I can definitely recommend Mayo Clinic in Phoenix. They explain everything, and guide you step by step. It's important to have a team that is so well versed in the whole process.

@deb2025 My situation was identical to Debs but in 2024. Testing at home 3 months. Then Mayo did testing on me in AZ for a week. Less than a month later I was added. Lucked out and they had a match a month later and we flew down to AZ again. Transplant went well but needed to stay in AZ for two months before they would release me. The days were hot but we came out to the pool more after the sun went down. We met 6 families going through the liver transplant process staying at the same hotel and my wife still keeps in touch with them. Mayo was great in every way. Five of the six transplant patients in our little group are doing well 2 years later. Here's to hoping you guys can work out the same. Best of luck. Prayers up.

@shacquie my husband has allstate medical insurance and Medicare l, so we paid 126.00. I don’t know the price before insurance. However before we were on Medicare, I always asked for a payment plan.

@shacquie my husband slept a lot. He was always freezing too. If she starts to have problems breathing, that’s the aceites. She would need to get a paracentisis. They put a little tube in the belly and siphon the fluid out. You need to take her to a good liver specialist. She probably needs to get on the transplant list.

@craigcraig thank you for your story, it helps soo much. Did you have aceities during the time while you were waiting?

@woodstock1959
This surgery takes a huge mental toll on the organ recipient. I wasn’t used to many medications and had fairly severe brain fog because of them. The first month was the worse. Six months later and I still notice it sometimes but only for a minute or two. I know it’s obvious to others. There is also the emotional impact of living with someone else’s organ: being grateful and sad simultaneously. Your husband needs a lot more time and healing.

@woodstock1959 yes she's always cold it seems. I wish we could move the process along before any of that.

@woodstock1959 can you order an insurance in a situation like this or once your sick carriers won't pick you up?

@pgruetz I think you are right. Im clinching my teeth, not sleeping, not eating as the hours pass until we can see someone here. The days go on and on, feels like forever. Meanwhile I have mo idea what's going on in her belly. She seems to be a tad bit more absent minded as the days go by.