I am going to the world-renowned Cleveland Clinic to be evaluated to get on their liver transplant list. So, that’s the why about going to Cleveland.

In 2014 I was in and out of the hospital so many times, I lost count. It started with an admission in March that went all wrong from the beginning. Just for starters I had two abscesses in my liver; this is not good. But here’s how it went down.

Wrong Thing #1: Pancreatitis post-ERCP (done on second day in hospital). While I was totally narced out for a few days, they pumped me full of fluids to get rid of the pancreatitis.

Wrong Thing #2: All the extra fluid decided on its very own to migrate to my lungs.

Wrong Thing #3: Breathing was more and more difficult, and I was moved to Baby ICU. For just 12 hours or so.

Wrong Thing #4: ICU doc diagnosed me with ARDS (acute respiratory distress syndrome) and I was moved to Real Big ICU. ARDS has a high mortality rate.

Two weeks and many procedures later, I finally went home.

 

Right Thing #1: All of this woke me the hell up – I could die in one of these admissions. I decided that was not okay with me.

 

Before I got sick, I’d been told once again by my hepatologist that I needed to find a live donor. But I was sick of looking for a live donor, especially with all the rules they have about it at University of Colorado Hospital Transplant Center.

That hospital ordeal and the infection dogged me all year long. And I got to thinking about live donors again. Only I wanted to find a center where they allowed anonymous, or altruistic, living liver donors. So I called UNOS (United Network of Organ Sharing) and asked for their help in researching that. They were able to set me in the right direction among their databases, and I found four centers. Four, in the whole country. My UNOS contact told me there was no rule against the anonymous part. But at all the other centers, the bioethicists win (to the patients’ great loss).

The four winners are Cleveland Clinic, Henry Ford Hospital in Detroit, Yale University Hospital, and Virginia Commonwealth Hospital in Richmond. But I held onto that information – wanting to call, not wanting to call, afraid again of rejection and being ignored (my experience at UCH), and just inertia. I couldn’t get it moving.

When this most recent live donor (for UCH) came along and volunteered (I wasn’t asking anymore), I had this strange resurgence of a feeling I hadn’t had in so long I’d forgotten about it. Hope. I felt hope for the first time in years. It energized me. It made me happy. It made me creative and it allowed me to think about what I really wanted in life. Finally. A return to Life (yeah, capital L).

Then UCH rejected my live donor, and we were both devastated. I knew then I was ready to start calling the four transplant centers I’d uncovered. And I didn’t let hope get away from me this time.

I called Cleveland first and I’ve had great interaction with the care team there who are both super-knowledgeable and very communicative. And caring. It ended up being the only transplant center I called.

Cleveland Clinic is very thorough when they vet you for their transplant list. They needed me first for five full days of testing at the clinic. But then they couldn’t get one appointment until the following Monday, so now I’ll be there for nine days.

The transplant coordinator said once I was accepted on their list, they would start looking for a donor for me. Looking. For me. I didn’t have to do it.

I’m deliriously happy. And I’m also a bit disappointed to be signing up with them and basically leaving UCH at the Live Donor Altar. But it wasn’t going to happen here, I knew that and I had to move on.

 

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