The story of my liver transplant

Hi my name is Ross May and I’m 27 years old.

I had no idea I needed a transplant when I was eventually told I needed one.  I was fighting fit, running my own business as a sculptor which I loved and doing karate training.  Me and my brothers, Lee, Nade and Jeoff used to have loads of fun going out on our bikes just doing normal stuff.  One morning I woke up and my eyes were yellow.  I went to the GP who thought it was a urine infection and sent me home.  The next day I was completely yellow and mum rushed me to the London Chest, my hospital at the time. They told me it might be kidney stones and I was in there for 8 weeks.  Eventually they sent me to Guys and there I was told I was in acute liver failure! I was informed that my hospital should have been monitoring it so I was really angry.

I was then put on the transplant waiting list.  I had to close my business down, my whole life completely turned around in a very short time. I blew up like a balloon and was really ill.  My dog Marley was my rock he laid on my bed and wouldn’t go for a walk, he was incredibly protective of me.

I had 1 false alarm, but on the 14th of December 2001, I had another call and after 6 months on the list I got my liver.  It took 12 hours and when I came round I was signalling for them to take out the tube whilst patting my chest because I really wanted a physio which they thought was funny.

My recovery was looking good but suddenly I had pain in my side despite epidurals and other pain relief they were giving me and then I collapsed.  The anaesthetist thought the pain was in my head and wouldn’t do anything at which point I remember saying in my head, ‘that’s enough’ and I arrested.  They bought me back round and I arrested again but I don’t remember much from then on except I had some kind of out of body experience.  I saw my self and my Mum from above, but not my Dad and I was upset that he wasn’t there.  I know that it couldn’t have been real because my Dad was on the bed holding me but it was a strange experience!

After that I made a steady recovery at home but then 3 months into it I had serious pains in my side which at first I thought must be scarring form the op.  I ended up collapsing when I was walking my dog and was rushed back into hospital.  I was in there a few days but they weren’t convinced anything serious was wrong and were going to send me home.  Then they did a scan. This showed I had a slight leak where they had sewn up the arteries and veins but they said they weren’t going to do the op for 2 weeks which made me really angry and I discharged my self.  My parents persuaded me to go back in and the hospital did the op the next day.  Afterwards, the head doctor came and spoke to me.  He apologised and said that if they hadn’t done it then I wouldn’t be here now.

After my liver I met Tina who I was with for 3 years. I wasn’t expecting to meet any one then but she was brilliant.  She made me strong and helped me focus on what I wanted out of life, find my path really.  She took all my health stuff in her stride which reassured me because I was always worried I would never find any one to cope with it all, which I guess lots of CF people worry about. It ended amicably recently.  I love travelling and I went to New Zealand a year after my transplant.  It was something I needed to do in my life and I had family out there.  It was a different way of life, really amazing and I am planning a return trip, for a year, at the end of this year.  I will really miss my dog Marley, and of course my family who were so supportive.  However I will also miss my CF friends who have been supportive in a different way.

There is a bond between CF friends that doesn’t exist with your friends from home and these relationships are really important.   Recently I lost a really good mate with CF. I spent a lot of time with him, when he was really ill at the end, coming up to Cambridge. We were very close and talked about lots of things I never talked about with any one else.  However relationships with CF friends have caused me problems and it was hard for my girlfriend to understand. I think it affected us as it made her feel isolated and she couldn’t understand it.

Having had my Transplant and facing the fact that one day in my future I will probably need a heart and lung or double lung transplant, I would like to end by saying that organ donor awareness is so important and it is not made clear enough to people.  I personally feel the government should change the ruling, like they have in other countries, to have a card to say I’m not willing to donate rather than the other way around.