This is the story of David and Valerie, Mother and Son.  We both had transplants, David August 1998 (No. 6) and I had mine November 1999 (No. 37).

We both developed Ulcerative Colitis when we were young.  I was 22, David was 18.  Mine was a long term thing, David's was rampant.  We knew David had this problem when we came to the South Island.

He got really sick six months after his 21st birthday.  He was bleeding internally from a condition called varices, which is a side effect of the disease Sclerosing Cholangitis.  We learnt this when we got a call to say he was in intensive care on a life monitor.  He was not expected to live.  He stayed in Wellington, he did not come with us.  He pulled through, but had a lot more visits to the hospital, until in the end he was dying from this disease.

While all this was going on, I was starting to have trouble with my bowel a lot more.  I fell over in our backyard, (we live on a hill), and fractured my sternum, and I ended up in hospital.  They found I had the same disease, but I did not have varices at that time.  I was on the way to getting very sick.  Like David, about three years after my fall, I started going into hospital a lot.  I had developed varices but mine leaked, they did not bleed like David's, and I would have to have them banded. [Banding is putting a rubber band tightly around the varices to stop them leaking].  In 1998 David went up to Auckland to be assessed, as he was nearly past the point of no return.  [This is assessment for liver transplantation by the New Zealand Liver Transplant Unit, Auckland Hospital].  He stayed there until he got a liver.

I went up to be his carer, it was a hard thing to do.  I did not realise what it involved; it was hard work as David and I had lost our very close relationship, mainly because I could not accept that I had passed on this disease that I know nothing about, and David, I think, blamed me a bit as well.

We lived in a motel, one lounge, one bedroom, one bathroom and toilet.  A lot of others have done the same, so they know what I mean.  One day after waiting seven weeks, the phone rang and it was all on.  The family got phone calls, David went to the hospital, and I started to pray.  Everyone got there to be with David before he was taken to have his operations.  He was in theatre for six hours.  We spent the night in the Ward and at five in the morning Steve1 came and told us he was in the Department of Critical Care Medicine [DCCM] and that it had gone well.  David came back into the ward 24 hours later. He had a rough time with rejection, but it came right. Our youngest daughter came back and looked after David, so we could come home, as I was not well.  He left to come back to Wellington ten weeks later.

I had got to the stage where they could not do much for my varices, so a letter was sent to Auckland, and in August the NZLTU rang for me to be assessed.  I was in Auckland for two weeks, staying at the same motel.  They sent me home after two weeks to wait, as they accepted me, but I was third on the waiting list for "A"type livers.  I was only home ten days when I had to go back as I had come to the top of the list.  I waited ten weeks for a liver, and I was not well in those weeks before, so it was a relief when the phone rang, not just for me but for Maurice, my husband, who was my carer.

I really gave him a bad time, how he stayed with me over the years I don't know, but he understood I was not well.  My family arrived.  We have three daughters and David, who is the youngest.  He was the first, then the girls came.  From that day everything changed between him and me, he was very good for me.

I went to the theatre at three in the morning, and had nine hours in there as my liver had an extra bile duct, so they took some of my top bowel and built a new part on it.  For me, the Ultrasound people say I am like Spaghetti Junction inside.  I had twelve hours in the DCCM then back into the Ward for seven days then back to the Motel.  I had no rejection then, and still have had none.

David had three more operations for his bowel, he is doing well now, has got his life on course again for the future.  

My two oldest daughters accepted that David and I had to have transplants, but my youngest, who is a nurse, could not accept that I had to have one as well; she did not want to know.  She was not with me when I had my transplant.  She told me I was her Mum and she was frightened.  She was fine with David. But everything is all right now.  She now agrees that it was the right thing to do.

I enjoyed doing the TV programme.  All the time before, and in Theatre, they had three crews each.  The last interview was the day I came out of hospital.  A lot of people have asked what I got paid to do it.  I tell them it was to let people know about being a donor for cases like mine.  No money changed hands.  It was also to say thank you to John McCall [Surgeon, NZLTU], Steve Munn [Surgeon and Director, NZLTU], Mike Corbett [Liver Registrar, NZLTU] who was with me in Dunedin as well as Auckland, and Stephen Gerred and all the nursing staff who helped David and me.  I must not forget Dawn2, Ed3 and Kathy4.

This has been very hard on this family, having to face this twice in fifteen months.  But it has made us strong and positive about the future.  But I wait and wonder when it will show its ugly presence in the future of my grandchildren or their children.

To all the people David and I met while in Auckland waiting, and who had transplants, hope you are all doing well, like we are.  Keep thinking positive.

There is a lot more to this story, but I have written the basic background to what happened to us.  Hope you enjoyed reading it!

February 2001

1. Professor Stephen Munn, Director, NZLTU
2. Dawn, Liver Transplant Co-ordinator
3. Dr. Ed Gane, Hepatologist, NZLTU
4. Kathy, Administrator, NZLTU

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