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GETTING ON THE LIVER TRANSPLANT LIST AND WAITING FOR THE CALL

We met a doctor at LifeLink in Tampa. (LifeLink are the area coordinators for organ transplantation.) LifeLink is staffed by wonderful, caring people. They help people get a transplant and evaluate them for suitability. They also provide for their post-transplant care. Even now they see me on a regular basis.

Getting a liver transplant is a long process. First you have to get written pre-authorization from your insurance company as a liver transplant is an extremely expensive surgery, mine cost almost $1/2 million. Then you have to pass a battery of tests. These include psychological as well as medical tests. If you pass everything, you end up on the waiting list.

I showed up for my first screening test a few days later. They drew some blood and then the liver coordinator started to explain to us (with a group of others waiting for a liver transplant). I listened for a few seconds then fell over in a dead faint.

Thirty minutes later I had been taken to Tampa General Hospital and was being revived.

I was in hospital for several days and they started the screening process. My heart of course was fine and I passed the other tests too over the next few weeks.

I was admitted many times before I finally got the call to come in for my transplant on October 11.

As I became weaker, my chest cavity filled with fluid, making it hard to breathe. The solution to this is a procedure called thoracentesis. Similar to the paracentesis described above, except that you are sitting up and the needle is pushed between your ribs into the area below your lungs.

They can only take of a maximum of 1.5 liters at a time to avoid damage to your lungs. So sometimes I had to have this done several days running.

All this time I was slowly dying. And all this time my wife was by my side, sleeping as best she could on a chair or sofa.

It is very important that you have an advocate. Someone to talk to or follow up with the doctors and nurses, even if you can't. A spouse, brother, sister, adult child or even a trusted friend.

In my wedding speech five months later my liver transplant I borrowed some words from Celine Dion. I said to my wife that she was “My voice when I couldn't speak, my eyes when I couldn't see, my strength when I was weak. I'm here alive today because you loved me.”

On August 28, I had my final test - a colonoscopy, and was told I was now approved to go on the waiting list.

I had not seen our home in an Cayman Islands now for months and I knew that I would be tied to Tampa until I received a new liver or died waiting. So I decided to book a last minute 5-day cruise out of Tampa that would spend a day home (in Cayman).

I almost collapsed at the cruise terminal and my wife got me a wheelchair.  She pushed me everywhere in this wheelchair, even around the streets of Cozumel in the incredible summer heat.

Last day on the cruise, I was feeling extremely ill.  We ended up see the doctor on the cruise and had an x-ray done.  It showed my lungs were again filled up with fluid.  That explained why I can hardly breath during the cruise.

First thing we got back to Tampa is to have a thoracentesis done.

Liver allocation is done in the USA according to your MELD score. A computation derived from several blood tests. Basically, the higher your MELD score, the higher you are on the list and the sicker you are. One person could maintain a low score for over a year. In my case my score qualified me almost immediately for high priority. Organ allocation in the USA is determined by a semi-government organization – UNOS. (http://www.unos.org)

In just nine months I had gone from fit adventurer to a man so weak that I could barely walk a hundred yards. I used the electric wheelchairs in supermarkets. My family from England had all come out to see me, knowing they may never see me alive again. Understand that it is not just unhealthy people who get sick. It can happen to anyone.

My family came out to see me many times. My brother jumped on an airplane with just a day’s notice and when here came to see me in hospital almost every day, driving almost an hour each way. As did my daughter, my son was also there most of the critical times.  Sadly he has now moved to Singapore.

My brother has called me every day, no matter where in the world he is. I also received constant good wishes from my wife's family and from other wonderful friends.

Special thanks also to our good friend Donna, who not only visited me constantly, but also cooked for me, usually wonderful chicken soups. Also Debbie, who used to be a theater nurse. She was always available to give us advice and support.

I pray you are never in my situation, but if you are it is important to never give up, never just lie there having a pity-party. My strength came from inside; but also from this wonderful woman I love so much and all my friends and family.

Towards the end, I mostly lost my appetite relying on fruit, yogurt and drink supplements like Boost.

I knew that if I was to survive I had to try to keep exercising. Many nights I could not sleep and paced backward and forward the length of our condo.

Of course by then even a 100 yard walk meant I had to sit down to rest before returning but I was determined to do what I could every day.

Waiting for an organ transplant is tough, unlike regular surgery, which you can schedule at a time when you feel fittest; you have to wait to get sick enough to reach the top of the list. But beware. If you get too sick they can decide you would not survive the 8-hour surgery and will just let you die.  

You are always waiting for the call and must ensure you can be reached at any time. I decided to buy a pager, not so easy nowadays when everyone uses cell phones. Finally I have got a pager and it saved my life.