|
Paul Richard Hain
Hi Stewart and Janis,
Kathy is the main person in my story. I'm glad you see what an amazing act it was on her part. It was difficult enough for me to accept that I was on the cadaver transplant list waiting for someone to die so that I might live. I thought, "this shouldn't be. Someone has to die for me to live. I don't feel that worthy." Finally, I accepted that the death of a donor was going to happen anyway. If it was my turn, I reasoned it was acceptable to me.
Then, a transplant surgeon told me I would not get a cadaver liver because it is allocated by a strict liver chemistry formula (MELD) that is based on how most livers deteriorate from alcoholism and Hepatitis B and C. My disease, Primary Sclerosing Cholangitis (PSC) killed my liver, but did not produce the liver enzymes to be measured by the MELD protocol. No transplant hospital in the United States would make an exception for me. He told me I was denied and that the only possiblilty was for us to find a living donor. PSC affects 00.05% of the population. I met with the doctor in charge of enforcing cadaver liver distribution across the entire Midwest. He confirmed I had no chance and that the committee that developed the standards knows a few diseases are not covered, but that they would not make any exceptions. My choice was, a) find a living donor or b) take the death sentence.
Kathy is a very well educated young woman. She was 33 years old when she read about my case on my daughter Heather's Facebook page. Though they occasionally saw each other since graduating high school fifteen years earlier, they kept in touch via Facebook. The girls were marching and concert band nerds playing all manner of percussion instruments. They even recorded the drum line tattoo for Richard Dreyfuss' movie, "Mr. Holland's Opus" back in the 90's. Dee and I loved having her musical friends around and we followed them everywhere they travelled for competition events. We casually knew her and her parents. They were polite, caring and fun-loving people.
Kathy graduated with honors from UW Madison. She worked for American Family Insurance headquarters in Madison for ten years. She and her husband, Pete had been married for some time. They did not have any children, just their professions. Pete worked as a Director for a philanthropic organization serving indigenous native Americans. He was offered a promotion that required moving from Madison to Wausau, WI. Kathy did not like to give up her job. American Family told her they had a good-sized branch in Wausau and they would arrange a transfer for her. All the pieces seemed to be coming together.
When they got to Wausau, American Family told her a mistake occurred and that there was no job for her. You can imagine how crushed she was. Her job was a big part of her life. She and Pete are people of faith, quietly keeping their disappointment to themselves. Kathy wanted some answers for why this happened to her. .
Kathy was trying to discern what new possibilities there were when she saw Heather's Facebook page about my disease. She called Heather and knew she was a blood type O+, just like me. She wanted to know about the testing protocol at Northwestern Memorial Hospital in Chicago. This was right after Thanksgiving 2011. She submitted to very extensive testing by hospital social worker, psychologist, and a full battery of MRI, heart, lungs, general health and surgeons that tried to talk her out of volunteering followed by a long wait for a decision.
Heather and my neighbor were blood type matches and had been tested, but were not an anatomical match (meaning the location of their bile duct, hepatic artery and portal vein did not match how mine were arranged. Typically they have to test 5 people to find one that will match. When they cut the donor's piece off, there is no turning back. They have to know to the greatest extent possible that the transplant will proceed.
I am going to tell you the rest just as she told me. Before being tested, she explained to Pete what she wanted to do. They are both in the giving/caring for people business, which I think explains their commitment. He said he would support her decision to go ahead. Kathy got a call from the transplant center after Christmas confirming that she was a perfect match for me. They asked her again to change her mind and that all they would tell me was that she was not a match. She said, count me in and when can we do the surgery? The hospiral said it would be 12-13 weeks because for a living donor surgery, they need two operating rooms,a primary transplant surgical team for her and one for me. And, they needed a third team to take over if primary team members need a break. Her surgery was 5 hours and mine was 13 1/2 hours. Very demanding and tiring.
At the luncheon Kathy said the most difficult hurdle was telling her mother and father and brothers, being not sure how to tell it or what their reaction would be. They listened to her thinking about the need she could supply and that the reason for her recent disappointments now became very clear. They were fully behind her decision. She never waivered. She knew even before she was tested that she was going to be my donor. Heather and I had exhaused all possible donors. I had weeks or perhaps a few months to live, but now I was going to make that 12 weeks one way or another. It was a very joyful, uplifting luncheon. Kathy left for home.
I think faith and prayer are very powerful forces. It may not be for everyone, but I accepted help from everyone in their own way. Hundreds of people were praying for us. It made a huge difference in my life.
A few days after the luncheon, the transplant center called Kathy and said they had a cancellation and could do the surgeries in 10 days. Both of us accepted this. It was the solution for me!
On the day of surgery, Kathy and I were on gurneys in the hall outside the operating rooms. Her medical team lead doctor came out and said; I'm going to repeat myself so Paul hears this time. You are a perfecty healthy person. We do not recommend surgery on you for that reason. I recommend that you call this off right now and we all will go home for the day. Kathy said she was there to donate part of her liver and let's get started.
My next memory was a groggy return to reality the next day after surgery. "How was Kathy." I needed to know she was all right. Not too much later, Pete wheeled her into my room. She had a smile on her face and so did I. In that short time after surgery, my natural skin and eye color had returned. I knew we both would recover.
She went home about a week after surgery. The part of her liver she donated grew back in two months. The liver is the only organ that regenerates itself. I stayed at Mariott's Residence Inn for another three weeks because of daily visits to the transplant center. Finally, I got released and went home.
Kathy and Pete had a baby girl three years ago and a baby boy last year about this time. They are a happy family. Their mother will have a great story to tell them about how she saved someone's life when they get older.
The whole experience seemed to unfold according to a plan that wasn't visible at the time. All of that took place and then life resumed to normal afterwards. Our "transplantiversary" was February 8. We decided to celebrate when the weather gets better and we can go to some family place where Heather and Kathy and Pete's children can enjoy themselves, too.
|
