Waiting...

I was surprised to hear people who have already had transplants say that waiting for the call was the most stressful part of the whole process. Now, I get it. Prior to being placed on the waiting list for a liver there is a lot going on - doctor's appointments, tests, treatments, research. Once on the list, the pace slows down and there is a lot of time to think. Too much time. As hard as I try to occupy my time with healthy preoccupations like exercise, reading, writing, fix-it projects around the house, etc.., my mind constantly reels back to the pending transplant surgery and all of it's implications.

The wait for me will be much shorter than for most on the list. I get "extra points" for having cancer, it is sort of a go-to-the-head-of-the-line pass. Many people on the waitlist have to wait many months or years rather than weeks, as I have been told to expect.

Focusing on the good stuff:
- The liver cancer was caught early, making a transplant possible.
- My insurance will cover most of the cost of the transplant. I would not be on the waiting list if I were not insured.
- I have a large, loving and supportive family and support network.
- My family lives in Pittsburgh, 20 minutes away from one of the premier liver transplant centers in the country - UPMC.
- I have no physical symptoms. I wake up every day feeling healthy.
- My odds of having a recovery with few complications are good because I am going into the surgery with a strong body.

The Basics

A CT scan in May revealed two tumors on my liver - one 2.3cm and another 2.0cm. The formal diagnosis is Hepatocellular Carcinoma (HCC) - primary liver cancer. Surgical removal is not an option because of existing damage to the liver. Chemo is effective at slowing tumor growth, but it is not a cure. The only cure for me is liver transplantation.

I am very fortunate that the tumors were discovered early, because once they grow larger than 5cm or spread to organs outside of the liver, transplantation is no longer an option. I have had two rounds of chemoembolization since my diagnosis and the tumors have shrunk in size to less than 2cm. While there is apparently a storm brewing inside of me, I am pleased to report that I currently have no physical symptoms at all related to the HCC - nothing. There are some temporary side effects from the chemo immediately after each treatment, but that is it. I still consider myself to be a very healthy guy and have continued to teach my spinning classes three times a week at the Downtown YMCA. My doctors say that this is the perfect time to have the transplant - while I am feeling healthy and strong.

I am officially on the UNOS liver transplant waiting list and will be having the surgery at UPMC - Presbyterian Hospital in Oakland (Pittsburgh, for all of you out-of-state folks). The phone call notifying me that a donor liver is available could come at any time. After that, there will be a whirlwind of activity and it will become difficult for me or my family to return phone calls and emails - that is where this blog will come in handy. It will continue to be updated during my surgery and recovery.