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The transplant stories listed below are all from transplanted patients and therefore are copyright material. Any copying or reproducing are prohibited unless without the express permission of the person concerned. (webmaster)
If you have a story that would be of interest to other liver patients, then please submit it, for possible inclusion on the website, this can be a great source of comfort and help to a patient facing a liver transplant.
Alan's Story.
I had been ill for about four years with a constant swelling of the stomach ( medical term called Ascites) and severe weight loss. This eventually led to a consultation with professor Ellias at the Queen Elizabeth Hospital in Birmingham. After numerous tests and biopsy I was informed that I needed a liver transplant. My first reaction was: could I go through with this?, how would I cope? But without it I had only been given a maximum of 2 years to live. With no future at all to look forward to and the thought of not seeing my very young son grow up, the decision was made to go ahead with this, and being only 49 years of age I owed this to my wife and son. I was then put on a transplant list and was on call 24 hours a day waiting for a suitable donor. From then on, every time the phone rang the thought went through my mind was it the hospital with the news I had been waiting for?. After approximately two months such a call was received. I made my way to the hospital and after undergoing various tests to make sure I was well enough for the operation I was then informed that the donor liver was not up to the standard required for transplantation. This was certainly a big setback after the emotions of preparing for the operation, but it was explained at my initial assessment that this situation may arise. After returning home, life tried to go on as normal, still waiting for that phone call. As time went by, my condition was slowly deteriorating and the thought went through my mind would a donor be found in time before I was too ill to withstand the operation?
Some four months later another call was received. This time, I hoped and prayed that everything would go ahead. Again I had to have various tests and was passed fit to undergo the transplant. The donor liver this time was very good and the operation was to proceed. No turning back now and it was at this point that I started asking myself questions, would the operation be successful? How would it change my life? Who had just died to give me another chance of life?. The operation itself took over 7 hours, after which I was transferred to the I.T.U. (intensive therapy unit). This was a very worrying time as the next few hours were critical, would there be any signs of rejection? This is quite common in most people but with various drugs this can usually be counteracted. After approximately 36 hours I was transferred to the High Dependency Unit under constant medication and monitoring. My stay in here was for 4 days. I was still feeling very weak and sore but grateful that it was all over. I was then moved onto a general ward and after getting my mobility back I was allowed home after just 8 days, thankful to be alive. I now have regular check-ups, and medication every day but this is a small price to pay in order to have my life back again. Words alone cannot express my heartfelt thanks to the donor and all the medical staff for their help and support during this trying time in my life. A special thanks to all the donors in the past who have donated their organs for transplantation to give someone else the chance of a new life. May god bless you all. I hope that anyone who is reading this and is awaiting a transplant has been reassured after being given an insight into my own experience. If I can be of any assistance or help in any way please feel free to get in touch with me at : liversupport@blueyonder.co.uk
Pictures of myself before and after transplant.
6 Weeks prior to transplant 14 Months Later
© Alan Hyde
Rowan's Story.
Hello, my name is Rowan Elliott and three and a half years ago I became ill, had a liver transplant and then got better again.
The End?
Well, no. Nothing is ever that easy is it? If it was you wouldn’t be reading my story and this is my story. I hope you enjoy it.
I was born in Derbyshire in 1971, the year the decimal system was introduced to Britain, (I use this only to inject historical context, it has no bearing on my life or this script). I spent the following four years or so learning to walk and talk to a fairly decent standard before spending the following fourteen years in the school system.
At eighteen, I emerged from a sixth form college armed with some qualifications and, on the advise of my parents, got a job.
I became a trainee quarry manager and eventually a quarry manager. I had a girlfriend who became my wife. I moved from Derbyshire to Worcestershire. I had very little money and then a bit of money. Gripping so far isn’t it? I liked sport and music and then I moved house and then I celebrated my thirtieth birthday with my family and then I became ill. Really ill, really quickly and really frighteningly.
My story gets a little more interesting now.
Being ill isn’t much fun. In fact it’s no fun at all. When asked what they’d most like to do in life people generally omit being ill from their “must do” list.
List of things to do-
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Walk the Great Wall of China
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Swim with dolphins
As I’ve said, I became poorly very quickly, it was around the Easter of 2002.
I’d felt tired for a couple of weeks and had strange cravings for food I generally didn’t like – sweet things mainly, biscuits, anything with loads and loads of sugar.
I felt like I was putting on weight although in my mind I was doing nothing any differently to before. I had trouble sleeping and would wake in the middle of the night sweating and with pains in my stomach.
At this point I did what most men will do: tried to forget the whole thing and work harder than ever to prove to myself that there was nothing wrong with me.
It didn’t work so eventually I decided to take a day’s holiday and decorate my living room. Decorating is easier than work so this would definitely do the trick. By Monday morning I would be fighting fit.
I like to think of this plan as a partial success and by Monday I was indeed back at work but I was now a very fetching shade of yellow and was feeling really not that good. Anyway, at work I greeted one of my colleagues and we had a conversation something like this:
Me: “Morning, any problems?”
Colleague: “You’re yellow. Go home”
So I went to my doctor who did some blood tests and told me to rest. The blood results came back and my doctor said that he was ninety five percent sure that I had Hepatitis A and that given time, I would be fine.
This came as a big relief but a week or so later it wasn’t relief I was feeling, it was pain. Oh and panic. The two P’s of a man unwell, pain and panic. By now I was sleeping fitfully throughout the day. During my rare conscious moments I would feel the most dreadful pains in my stomach that I had ever felt.
My legs had swollen, I had funny little spots on my chest, I felt sick and hot and cold and itchy and weird and I smelled. I smelled of poison and death. That’s what I thought at the time: poison and death.
I had long since abandoned my plan of working though my illness. By now my plan involved crying and pleading for help from my wife, my mum, God and basically anyone who would or could help me.
I was admitted to a local hospital, where the treatment I received consisted generally of worried glances and concerned hushed mutterings. They transferred me the following day to the Queen Elizabeth Hospital Liver I.T.U.
I was now in a place where things would get done. And things were done. Pipes and stuff were now sticking out of me and a doctor gave me some options. I like options, you can pick from them and decide to yourself which you prefer. The options were:
a) Get better on my own
b) Have some drugs to make me better
c) Have a liver transplant.
You see, by now it had long since been decided that I didn’t have Hepatitis A. My liver was F.U.B.A.R. – to use G.I. slang, but unfortunately nobody did or still does know why.
A week or so passed with peaks and troughs in my condition, until I was slightly crazy and slightly dying and I was told that it would be option C for me. I had chosen option A, but what the hell.
I lay in bed and got angry. I was livid, absolutely livid that I was going to die after only thirty years. I stated out loud that this was a rip off and that it was completely unfair and although I was crazy and dying and desperate I vowed to myself that fate or God or whoever or whatever had dumped me in this situation could stick it because I was going to live.
The doctors sedated me.
I was unconscious for around a week. During this time I had a liver transplant. During this time my wife and family were told that it looked like I would die. They went through hell. I went through a major operation and survived, thanks to the skill of the doctors and nurses.
When I came around I was a little confused to say the least. I’d had a liver transplant apparently and was still alive. My recovery was, I’ve been told, very rapid. I was still in “not dying” mode and did everything in my power to get out of intensive care. I succeeded after about a week.
A further week and a half later, I went home. Two months later I was back at work full time. Three and a half years later, I’m writing this.
At first I thought that having a liver transplant would prove to be a life changing moment and that my whole world would be altered forever. It hasn’t been like that.
My illness and operation is now in the past and that’s firmly where it will stay. It won’t rule my life and I’m back to doing normal things, work, sport, music etc. I’m not a great philosopher, as you might have gathered but I try only to take the positives from my experiences and get on with my life exactly as I did before.
Upon reflection, I think that I have learned three main things from having a rubbish liver:-
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Some people are blessed with unbelievable skills and minds. These people saved my life. I owe them big time and will never forget them.
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Some people had to go through their own personal tragedy so that I could live. I owe them big time and will never forget this.
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Some people love me and I love them. They saved my life. I owe them big time and will always be with them.
Every day by doing normal things I try to repay all these people. I love life, life’s good. My name is Rowan Elliott. I’m lucky.
© Rowan Elliott
Rob's Story
Reflections on a Transplant
I am very fortunate that I live only a few miles from the Q.E. I telephoned my wife who answered my call to her with complete disbelief I told her the Q.E. had rang, she answered “What did they want?”, I very calmly went home and showered to await my wife.
After this, panic stations. Number two daughter was rushing from her partner’s graduation ceremony in Swansea. Number one daughter, a teacher, leaving her classroom in uproar, to see me. My wife searching for the blue light to attach to top of the car before taking me to the Q.E.
We arrived at the Q.E. expecting a team of doctors and nurses to be poised awaiting my arrival. In reality we took the lift to West 3 where I approached the reception area to be asked “Who are you, what do you want?” When I explained the reason for my being there the nurse calmly said “Take a seat, someone will be with you shortly.”
Having undergone the final checks, being reunited with my immediate family and being admonished by Mr Meyer for being too flippant about the proceedings, he also mentioned that he was off to Paris to conduct a lecture when he had finished with me, that comment certainly having repercussions, I had the injection.
Thus commenced my journey to ‘The Land of the Fairies’. What a journey that was! How long I was in theatre and Intensive Care I do not know but I certainly had time to float down the River Seine, of course in a hospital bed. I also went on a cruise with friends and distinctly remember not wishing to be involved in a business deal one of my friends had set up! What I was doing on a cross channel ferry with my mother in law I shall never know. Further bewilderment as to why I was on an operating table underneath the elevated seats of a lecture room. Perhaps Mr Meyer may be able to explain this one!
Further thoughts of my time with the Fairies include vivid photographic visions whenever I closed my eyes, excepting of course when I was floating down the Seine or anywhere else for that matter. All of those tubes going everywhere, and being repeatedly told “Don’t pull them out”. My wife, following implicit instructions that I should be continually coughing, almost suffocating me.
I passed quickly through the high dependency unit to the open ward.
This was certainly another experience I will not forget in a hurry. Here I recall going through a period of slight rejection, my yellow fingernails were very becoming. This being followed by ALL of my lower body swelling enormously, I resembled Michelin Man X 2. Although I can no longer eat grapefruit whenever I see them at the market tears still come to my eyes. The sight certainly brought tears to my wifes’ eyes, whether of laughter or otherwise I am still not sure.
As a result I stayed in hospital for nearly three weeks, quite a long time I understand. On returning home there initially followed a stormy period on the domestic front, those steroids certainly have a lot to answer for.
After eight gruelling months I returned to work, the first month or so being particularly difficult physically.
In June the following year, almost 12 months after my operation, Carol and I had a week’s holiday in Bruges. This proved to be a key period in my recovery. During this holiday I was frequently exhausted, doing lots of walking. Fortunately we hade made the decision to stay in an apartment, where I spent a great deal of time resting. This did result in us eating out at unusual times; we did not have problems booking a table at 10 o clock at night.
However, we did have a lovely holiday and on returning home a major change seemed to occur to my body, as though a switch had been turned on and I was now functioning at 100%. This was a situation I could not recall previously in my life due to my taking debilitating medication and through illness.
Now as I write this, my wife and daughters gleefully reminding me that next year I will be eligible for free transportation in the West Midlands, I feel 30 years have been taken from my age.
In finalizing these recollections I must say a huge Thank You to Carol, my daughters Victoria and Laura without whose support, encouragement and cajoling I would never have been in this fortunate position.
Another big Thank You to the rest of my family and friends for their support and encouragement. Heartfelt Thanks to all staff at the Q.E., with a special Thank You to the radiographers who have enabled me to write these thoughts.
THANK YOU ALL.
© Rob Townsend
Kevin's Story.
Reading the wonderful stories of Liver Transplant patients at the Queen Elizabeth University Hospital prompted me to re-call my own experiences. Prior to attending the Hospital in 2005, I had visited Birmingham only once before. As a young man I had been part of a team of men moving a large safe from a city centre bank. Yes we worked at night but No, I wasn’t ‘Burglar Bill’, It was quite legitimate. I was helping a removal firm who were moving equipment to a new purpose built building in the city. Apart from that one visit, I had not had any other reason to return to Birmingham and didn’t know my way round. Then years later the following happened.
Having described that flashback to my youth, it was now 2005 and I was 61 years of age. Birmingham had by then changed beyond all recognition. I had become seriously ill and after a couple of periods in my local hospital I had been referred to the Queen Elizabeth University Hospital in Birmingham from my home town in St.Helens, Merseyside. My impressions of the new Birmingham in the West Midlands came as a big surprise. But bearing in mind that I was somewhat ill, with liver failure brought on by the combination of alcohol and an hereditary disease (HAEMOCHROMATOSIS), and it was a grey November day, all my impressions on that day came as a big shock.
My son-in-law had taken time off from his work to drive me and my wife Christine there. His car was fitted with the new fangled sat nav, but we still got lost and seemed to drive round for ages. Even directions from people we took as locals didn’t help. When we finally arrived I saw this big complex of old buildings surrounded by a building site.
My God, I thought ‘Why have I been sent here?’ We even went into the wrong clinic and joined a queue to be told, after a wait, to go next door. Even in next door (the out-patient liver clinic) I wasn’t over impressed. It appeared to be full of a mass of nervous, sweating people, all staring up to the heavens looking for inspiration. After being booked in I joined the throng and waited.
When I walked into the consulting room we were met by this large man. He introduced himself as a medical Professor, my first thoughts were laughable, thinking ‘Oh No. Not a mad Professor that’s all I need’ ( I’m sure he will know who he is and I very much doubt he will be offended by my description of him). He began to talk to us asking the normal medical questions and I very quickly realised that he knew what he was talking about, confidence oozed out of him and I began to relax feeling a great warmth towards him, a warmth and respect that will be with me forever.
It was then I felt I had been taken into the bosom of the West Midlands people who I found were as friendly and open as the natives of my North West home and I, very quickly realised that everyone in this hospital were only after one thing, that was to get you back to full health as soon as possible.
I was soon placed onto the U.K. donor transplant list and the wait began. Successive visits to the clinic were always met with the same friendly greetings and faces that became familiar. The journeys to Birmingham, although tedious at times, became a regular part of life and over a period of time we met up with the liver transplantation team, the transplant co-ordinators, dieticians and last but especially not least the fabulous nurses, all angels without wings, nothing was too much trouble for any of them.
That CALL came in the early hours of one September day in 2006. Christine drove me down on what seemed like a never ending journey. My thoughts on the way were I hope we don’t get cancelled , then as we got closer and closer that fear of the unknown surfaced.
My fears were unfounded and as usual we were taken into the bosom of the West Midland people. I had the transplant and after a period of marvellous care in the High Dependency Unit (HDU), and a stay in the general liver ward I was allowed home to further recover.
Another thing that new patients should be made aware of are the wonderful arrangements at the hospital whereby family members of a patient can be accommodated on site to allow visitors to be on hand when and if needed. This is especially useful when people like us are ‘Out of Towners’ who cannot travel on a daily basis to be by their loved ones. This facility is organised and run by yet other unsung heroes at the hospital, a Lady and her team, whom I have yet to meet, but who are responsible for making life as simple as possible for all. I know Christine and I couldn’t have managed without them and I am sure others will whole heartedly agree with us.
It is now December, 2007 and after my latest check up with the Professor I am beginning to once again enjoy life, forever indebted to the anonymous Donor, a man of a similar age to myself who was tragically killed in a road accident in Wales, and to his family and of course everyone at the hospital. My advice to anyone, from wherever in the land you travel, is don’t worry, if you have been referred to the Queen Elizabeth University Hospital for treatment your consultant back home knows his onions. The building work at the hospital is
progressing in leaps and bounds and from appearances will be completed some time soon.
I would like to take this opportunity to put into print my heartfelt thanks for the outstanding work and professionalism that you exude at Birmingham and many thanks from a Lancastrian to all the ‘Brummies’. That ‘GIFT OF LIFE’ you gave me was from Heaven, of that I’m sure.
© Kevin V. Conroy
Eileen's Story.
Hello,
I would like to share with you my experience of a liver transplant. I had been ill for 10 years prior to my operation getting worse and worse. My problems were continual generalized irritation of my skin which was almost unbearable at times, i was very jaundiced, I had fluid retention in my legs and abdomen, lost weight, vomited occasionally and also had a big problem with constipation.
My GP referred me to the Queen Elizabeth Hospital in January 1999, I was admitted in March 1999 for assessment to see if i was a suitable candidate for a transplant and was put on the transplant list.
 TRANSPLANT 
BEFORE AFTER
My liver transplant operation was on 27th July 1999.
I did have a few problems afterwards but i felt as if a miracle had been performed, all of the itching had stopped, my jaundice went, i could eat anything, all of my signs and symptoms had disappeared completely.
I will always be eternally thankful and grateful to my donor and family, also to my surgeon, his team and all the nursing staff for my excellent care during my stay in hospital.
© Eileen Kendal
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Transplant Stories
