The Sum Of Our Parts
A Story Of Donating A LIver
I have been known to write the odd race or run report but this is a horse of a different colour. Having just undergone surgery I knew I wouldn’t be running or racing for a long long time so it would be a while before I get to write one again.
The real reason for writing this story is to try and educate people about organ donation.
Nothing to do with running at all really, well maybe in a roundabout way but an interesting turn of events in an Ultra runners life.
Long story short is my big sister has a rare Liver disease and was on the waiting list for a Transplant.
A little known fact is that 22% of people waiting for a Liver Donation die waiting for a Donor.
If I can someway make more people aware of the Organ donation Process and how you become one then I will have made some kind of a difference and help some people in the same position as my sister.
So here it is…
My big sister Therese had been unwell again for a few months. The Disease she had before (PBC) had come back and she was getting sick fast.
Primary biliary cirrhosis (PBC) is a kind of cirrhosis caused by damage to the bile ducts in the liver. Much like other forms of liver disease, PBC permanently damages the liver as tissue is replaced with scar tissue (fibrosis). It affects up to 1 in 4,000 people. The sex ratio is at least 9:1 female to male. As more scar tissue develops, the structure and function of the liver are affected.
It is very rare to get this disease in the first place but even more rare for it to return. Therese had already undergone a Transplant in 2003 and had survived. When I say she is a tough fighter believe me she is by far the strongest person I know on this planet. Her will to survive and be positive is never ending and unwavering.
I received a phone call from Therese in early November 2015 and I knew she was in bad shape from her voice, she went on to explain that the Surgeons in Birmingham (Largest Liver Transplant Hospital in Europe) had said there was another option for her. Something I had never heard of a Live Donor Transplant. It’s 25% more successful!! The question was only out of her mouth and I already knew the answer. It took me a millisecond to decide. They process around 200 Liver Transplants per year in Birmingham but had only ever done 26 Live Transplants. The percentage rate for success is 25% higher.
I had planned a few running challenges ahead for the next couple of years but all of these would have to wait. I was in good shape so I went out and had another go at running the Wicklow Way out and back a 261km Mountain Trail before I was going to have an enforced break. Happy to say I made it to the end.
The next couple of months were a bit messy with the Surgeons deciding to hold on for a while but Therese got very sick around January, got pneumonia and was flown straight over to Birmingham to the Liver Specialist Hospital and had been there since.
She had gotten so sick they had taken her off the Transplant list until she could get a bit stronger because she would not survive the operation in her current state of health. She was down to ridiculously low body fat and muscle mass and it looked very bad for a while. Like I said before she is a fighter!!! Therese spent the next few months forcing down food and protein shakes, making herself get out of bed, walk and go to the physio to build her body strong again for the operation. The Doctors could not believe how well her body responded to the exercise and physio but she just kept on working and fighting until she was well enough again.
So March came around and Therese called me again to say she was back on the list and if I was still willing would I go through all the tests. The next few months were spent flying back and forward to Birmingham for the most extensive tests known to man. They will not risk operating if you are in any way unwell.
The go ahead for the operation. July 11th
Time flies by as it does and to be honest the last few months were a bit of a blur because I spent most of my time worrying if I would pass all the tests and be healthy enough to help my sister. When someone tells you there’s a high risk of death from an operation it makes you stop and think for a minute. A million questions run around your head but in the end I love my sister and that’s what I focused on. There was going to be a lot of pain but I was okay with that!
The week before the operation I got a phone call from the Hospital saying that there was a small problem with one of the proteins in my blood and that I would have to fly over again for a Biopsy of my liver. This was to be the start of a real rollercoaster ride of hospital life for the next 3 weeks.
I went over and they basically stick a long needle down into your liver while you are awake and suck out a small section to test it. If it came back positive it meant that I had lung disease or even worse liver disease. The doctor explained the process and said that sometimes they have to go in twice to be sure but that was rare. So on the table, juiced up and they guide the needle in using ultrasound so as not to hit your lungs or stomach. There was a nurse sitting beside me holding my shoulders still and talking to me during the procedure. She looked very nervous!! I asked her why and she said if you move I won’t be able to hold you. I giggled and said it would be grand. Of course the first one didn’t work so he had to go in a second time. The poor nurse was sweating at this stage but it wasn’t so bad. More of a strange uncomfortable feeling than painful. Turned out to be nothing so it was back home for a couple of days to try and sort out my life and then back on a plane again to Birmingham for operation dissection.
Birmingham Hospital is a newly built state of the art facility. They have a wonderful set up in Birmingham where your family can stay in the Hospital Grounds while you are going through the whole process. Maria had agreed to come over and look after me while I was in recovery and to help with everything I needed post operation slice up. Maria has a gift of keeping things light and has a special way of making people relax so I was very glad she was there. Little did she know what she had let herself in for!!
So Sunday evening comes around and we are both brought over to our Hospital ward. Our Surgery would start at 7am. I have to say all things considered we were both pretty relaxed and having a good laugh. I think Therese’s husband Ian and Maria were more worried than the two of us. We had strength in numbers, we were about to go into this together and that was a reassuring feeling.
I slept pretty well, they woke me at 5.30am and starting taking bloods and readings to prep for surgery. Maria and Ian arrived around 6am and then I went to see my sis and give her a big kiss and a hug before we went down.
They offer you a wheelchair to go down for surgery but being a true ultra runner I wanted to walk down to theatre. We got down there and a guy comes out and asks me the same questions I had been asked one hundred times over the last 6 months. It was always the same. Are you still happy to go ahead? We can stop everything now.
My sister asked me this question nearly every day and I always laughed at her. As if not doing it was ever an option for me. My mother had to go through watching her daughter nearly die before. Now she was faced with it again and how lucky was I to be in the shape of my life to be in the position to help my sister and mother.
So into the bed before we leave for the anaesthetist. They give us a few minutes to have a few words and then we say goodbye. Straight into the room and they put in the cannula into my arm for the Anaesthetic. My surgeon is there, Paola the Italian surgical wizard. We had gotten to know each other quite well and I told him I will come get him if he messes me up. He said he takes extra care with a healthy person because it goes against all he works for to cut open a healthy body. An ethical dilemma I suppose but for a good cause. He said the surgery would take around 5 Hours but Therese’s could be up to 12 Hours.
A bit of nervous chit chat and then the aul count back from 10 mullarchy. I was gone by 7!!
Next thing I remember is Dawn (my Liver Transplant Co-ordinator) saying “are you okay Don, can you feel any pain?” I could feel a lot of pain around my elbow joints and toes for some reason. They gave me some morphine for the pain and then put me back to sleep again and sent me to the ICU. Next time I woke up it was Tuesday and I was still there in ICU, Maria and Ian were both there, they told me that Therese was in the same ward and everything was okay. I was so happy to hear that but I could tell by their faces they weren’t telling me something. Later on that day Paolo the Italian Surgeon came to see me. He then proceeded to tell me the details of the operation.
My operation took nine hours instead of five! I had a lot of core muscle tissue from running so much that he was afraid I would have hernias from the muscle fibres pulling every time I move. With me sorted out, in the meantime my sister was going through another battle altogether. You could not write a script for the following. The section of Liver they took from me was a fraction too big to fit inside Therese, when they tried to put it in no matter what way they put it, one of the main arteries form the heart was kinking. They tried a couple of times but could not make it work. They considered putting in a stint to hold it in place and the Stint Team had been called in to go but then at the last moment a Liver came in that was a match for her Blood Type and size. They had my liver transplanted in and sewn up and now they were going to do a second Transplant. I can only imagine the feelings of helplessness that Maria, Ian and our family must have been going through during these long hours. The head surgeon said he had never had to have those conversations in his whole career and hoped he would never have to again. Therese was in Surgery for 15 Hours.
Therese had three Livers in her body in the space of one day… Kuraaaazzzy
Happy to say the second liver fitted perfectly and worked straight away. Dr Paolo explained that he had put my section of Liver on a machine all night and if I was okay with it he would like to use it for another person. Of course this was even better news. I spent two days in Intensive Care and then they shifted me upstairs to the recovery ward. I asked them to sit me into a seat and wheel me around so I could see my sis. She looked rough but determined as usual.
So how does all this go down?
Anaesthetic, Epidural in your back, Tube into your main artery in your neck, Tube coming out of your stomach to drain blood, bag attached to your stomach to collect the excess blood from inside your stomach, Tube in your knob going into your bladder so you can pee, cannula in both arms. One by one they start to remove all these things that have been inserted inside your body during the operation. Leave all dignity at the door.
So I was on the recovery ward for a day and the pain wasn’t too bad. I could eat and drink and all was looking pretty good. Therese came up later that day and she was looking really fresh. The next morning she walked down to my ward just to show me how tough she really is!! I couldn’t get out of the bed. She slagged me and called me a wuss. I of course got up later on that day and walked down to her and gave her the fingers.
Later on that day they said they would take out my epidural which I thought was a great sign. They also took the tube from my neck, the length of the thing. So out with the epidural and then the shit hit the fan. When I say pain kicked in I mean the mother of all pain. They gave me some Morphine through a syringe in the mouth which worked for an hour and then the pain came back just as bad. They tried different mixtures of painkillers for the next 24 hours but nothing seemed to work. After a night with no sleep and no food or drink they put me on a Morphine drip. Whenever I felt pain I could just hit a button. It’s set on a time delay so you cannot overdose.
The next three days was a complete out of mind and body experience. I would get moments of clarity when the pain would ease and I could make out what was going on. I couldn’t eat or drink because I had picked up a mouth virus from all the drugs and everything tasted like cardboard. I was hallucinating so much. I looked down at my body and I had lost so much weight. When I closed my eyes sometimes all I could see was the most detailed portraits of old Kings from different stages of history. When I made it into the toilet to have a shower the whole floor was heads of kings and queens. Don’t ask me why but they were there all the time. By the third day I had enough and just lay there crying. I couldn’t eat or drink, they collapse your lungs during the operation to make room and it had made me lose my voice temporarily. I felt helpless and thought I was done for!
I called for the nurse and got Maria to tell them to get me off the Morphine straight away. It was killing my mind, appetite and I was going downhill fast. I had to fight with them to take it away but eventually they did. The Nurses and Doctors in the Liver Transplant Unit are just wonderful human beings. They spend their lives living to help others.
I needed calories and sleep now. Milk, milk and more milk. Then Ice Cream. They had been giving me something for the mouth infection so slowly my taste came back. By the next day I was feeling a whole lot better and the pain was starting to subside. Poor Maria had to literally wait on me all the time. I couldn’t do anything for myself, the things you take for granted like eating, going to the toilet, showering, dressing and your normal day to day stuff becomes a major task. I was on the jacket potatoes now with beans and milk. Power in the form of food. I had them twice a day and I was starting to come back to life again. It’s a very strange feeling going from being in the shape of your life physically to not being able to walk or stand up. Major head melt!!
What I didn’t know and what was unknown to the Surgical Team was how much I would suffer. When you have a lot of muscle fibre and very little fat the pain is multiplied. A donor will feel more pain anyhow but it usually stops after 24 hours. Mine lasted for four days!! Like I said you couldn’t write this stuff. One of the Surgical Team later told me they had long discussions about how much pain I would be in and how to manage it. Most people going in for this surgery are not in the best of shape so their core is pretty supple allowing for more movement.. Having just ran a 24 Hour Race the week before my core was pretty hard..
Therese in the meantime had gone from strength to strength. She had a brand new liver and was feeling good but still having her own battles with the pain. The two most important things for recovery in this situation is food and sleep. After that it’s about pain management and movement. If you can get the balance right with your pain medication then you can eat, sleep and move around. The main problem here is when you manage your medication wrong, 15 mins too late and you are in a world of pain which might take you another eight hours of medication to get on top of again. There is no one to blame in this situation, like any hospital anywhere in the world they are usually short staffed and it’s hard to get everything done on time. I realised after a day or so that I would be better managing my own medication but that was against the rules apparently. It was down to the risk of overdose or some other patient taking the wrong medication but either way it’s a flawed system.
I couldn’t sleep or get any comfort because of the pain and this is when you need to rest most. The pain kills your appetite and stops you moving around. A 6ft 3inch man trying to fit on a 6ft bed is never gonna work. All these things added together and I was getting very pissed off because I knew there was no need for the suffering. I called up the Co-ordinator and told her exactly how I felt and she organised to get me 24 hours supply of painkillers. Within a day I was eating rings around myself and had the pain under control and felt I was winning the battle between me and Mr Pain. I started walking with the aid of a pushchair in front of me. A couple of weeks before I was running in a 24 Hour Race and now I couldn’t even walk 50 Metres.
A couple of days of trying to walk, eat and sleep and they discharged me from the hospital to the local accommodation where I could come back every day for tests. I had lost 10 Kilos in 10 days. The only way I can describe lying down in a real bed after all I had gone through was lie lying back into the back of a Swan. I was asleep in 2 minutes and slept for 3 hours straight. Maria said she came in to check on me and I had a smile on my face while asleep.
All this time Therese was going through the same battles with her medication. She had way more medication to take than me so they wouldn’t offer her the same deal of looking after her own pills. I went over to see her the next morning at 7am and she was in a very bad way from the pain. I have never seen her break but this was the first time it had gotten too much for her. I took her in my arms and she just cried. She pulled herself together and said “people will never understand the pain Donald. There are no words to explain”. I knew what she meant!! She like I was getting angry and frustrated because she had the pain under control for a few days and now they had missed her pills twice in a row and she was suffering needlessly. She looked exhausted and hadn’t slept in 24 hours and it was really getting to her. I told the nurses and her Co-Ordinator to see if they could sort it out. They said they would.
Like I said before you couldn’t write this stuff.
I was home in bed when I got up for a toilet and I met Ian my bro in law in the corridor around midnight. He stopped me and said that Therese had just had an Epileptic fit. When Therese was younger she had epilepsy for a few years but she hadn’t had a fit now in 25 years. She had said to Ian during the day that she felt the way she used to feel before she used to take a fit. She knew it was coming!! The tiredness had taken its toll on her mind and body which had been through so much already. I was so angry but nothing you can do in this situation but keep the head and try make things right again. Ian went back over to the ward and she had another fit at 2.30am. You really have to wonder about life and the whole plan of things and the way things pan out. Maria and I went back over in the morning and Therese was hooked up to a million wires and tubes coming out of her. The Nurses told us she had been down for full brain scans and an MRI. Everything unbelievably came back clear. The two fits were so violent that she bent all her bottom teeth way forward and badly bruised her tongue.
She slowly came back around and by the end of the day all her vitals went back to normal. They had put her on a Morphine Drip the same as me to help her get through the pain not only in her body but now her mouth as well. Therese like me said she hates Morphine and would only use it as a last resort. I will never forget two senior Nurses standing there looking at her Vitals and readings shaking their heads saying “Two Fits and Two Transplants and she just shakes them off” Like I said she is made from different stuff. As soon as she was able to talk again she was saying it was just a speed bump and she would deal with it. The hiccup made them look at everything a bit closer and she got 100% attention for the rest of her stay in the Ward. With the Morphine there is a couple of days of bad depression and that’s another thing to deal with. Either way two weeks from the day of the operation we are both discharged and happy to say both of us are getting back to normal life again.
So that is my story of a Live Liver Donation. I hope it has somehow inspired people to register themselves as a Donor.
Therese is now back to work and living a semi normal life with her two girls and husband. We spent this Christmas together and all the pain and crap we went through was forgotten and life is great.
We are nothing but the Sum Of Our Parts and that which we give away for free.