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Stories

Stories and experiences from Liver Transplanted Patients

The transplant stories listed below are all from transplanted patients and therefore are copyright material. Any copying or reproducing are prohibited without the express permission of the person concerned.  (webmaster)

Reading the stories below will give you an insight of what it is like to undergo a liver transplant and the high’s and low’s that patients go through during the transplant process. Liver disease affects all sorts of people young or old. The stories below gives a cross section of different liver diseases and age ranges.

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    Rowan’s Story    Rob’s Story    Kevin’s Story    Amy’s Story    Valerie’s Story    Gerry’s Story          Marcus’s Story

  Alan’s Story

DSCF0881I had been ill for about four years with a constant swelling of the stomach (medical term called Ascites) and severe weight loss. This swelling was kept under reasonable control by taking diuretics (water tablets) Over time this situation got progressively worse and the ascites would not clear itself anymore with the medication, and the weight loss was getting to a critical  level. I was eventually referred for a consultation with professor Ellias at the Queen Elizabeth Hospital in Birmingham. I was told that the ascites was at a dangerous level and needed to be drained immediately.  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. Everything was going very well with the transplant, until 7 weeks after the transplant I was again admitted to hospital with severe stomach pain only to be rushed down theatre to discover that I also had colon cancer on top of the transplant. This brought me down even more so, but I was determined that this was not going to beat me as you can see from the photo below 14 months later. 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 email address   liversupport@blueyonder.co.uk  

Photo’s of myself before and after transplant 

……March 1999    cover0002       Alan 1 year on August 2000 Mod

      6 weeks prior to transplant                 Weight 6st 4lbs ( 40kgs)                   Exactly 12 months after transplant

By the time I actually had the transplant I had lost over half my bodyweight, words cannot express my sincere gratitude and thanks to all concerned, the transplant has transformed my life completely.

                                                                                                                                                         © Alan Hyde


 Rowan’s Story

Rowan modHello, 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-

  • Walk the Great Wall of China

  • 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:-

  1. Some people are blessed with unbelievable skills and minds.  These people saved my life.  I owe them big time and will never forget them.

  2. 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.

  3. 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 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 around. 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 impression 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 around 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 overly impressed. It appears 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 laughable, thinking “O No 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.

The CALL came early in the hours of one September day in 2006. Christine drove me down on what seemed like a never ending journey. My thoughts on the way there were I hope we don’t get cancelled, then 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 Midlands 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 of the hospital whereby family members of a patient can be accommodated to allow visitors to be on hand when and if needed. This is especially useful when people like us “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 of 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 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


Amy’s Story

  After (Feb 2016) CroppedI am one of the lucky ones. I was only on the transplant list for 3 weeks before receiving my gift of life. At the age of 21, I received my liver transplant after being diagnosed with Primary Sclerosing Cholangitis (PSC) and Ulcerative Colitis. It all began in summer 2014, my mother kept asking me to go to the doctors as she was concerned that I was suffering from IBS. After eventually taking her advice I went to see my GP. My doctor wanted to do some blood tests to make sure everything was ok. I had the blood tests as advised and received a call the next day saying I needed to go to the doctors urgently as something was wrong with my blood results. My blood tests were abnormal. I underwent a few examinations including scans, x-rays and biopsies until they were able to confirm I had PSC.

Over time, I became jaundiced, my appetite was poor and all I wanted to do was sleep. I remember going shopping one morning and people were staring at me. I knew they were staring at the yellowness of my skin. At first it did not bother me but the more people stared the more conscious I felt . It seems a lot more was happening inside. It only hit me how serious my condition was on the day I was told I needed a liver transplant. I was so scared of the unknown , not knowing what was going to happen and when or if I would receive a transplant. 

January 5th 2015 was when I received a call from the transplant Co-ordinators  saying there was a liver available. My emotions were all over the place. I felt so guilty and upset that there would be a family somewhere in the world grieving . I felt so happy and relieved that I would be a step closer to receiving a normal life of a 21 year old. Mostly, I was so terrified for what was about to happen to me.

I received a split liver from a 32 year old female. I was also told the other part of the liver went to a little boy at Birmingham Children’s Hospital. I was over the moon that I was able to share such a wonderful gift with somebody else. I remember waking up and being in intensive care. Everything was a bit of a blur to me. One thing I can remember  is the amazing care I received from nursing staff. Even though I was surrounded by wires and could barely move, I knew I was being looked after. After 2 days I was moved up onto the liver ward. I feel that I made a quick recovery as I was only in hospital for a total of 10 days. I was scared at first to return to my own environment. I received so much love and support from my family it made home the best place for me to make my recovery. 6 months after my transplant I was able to return to my studies as a student nurse.

Before cropped

After a few months I became ill again. I was suffering from a colitis flare up. I lost 2 stone in weight, my appetite was poor and I could not stop running to the toilet. I was in so much pain I did not know what to do with myself. I contacted my doctor who increased my steroids. After 1 week of steroids and no change, Drs at the QE decided it was best to admit me into hospital and try intravenous steroids. I tried these for a couple of days and there were minor changes.

During my stay in hospital I underwent a number of tests and examinations. The gastroenterology team suggested that surgery – removal of my colon may be the next step for me. I was introduced to the surgical team; I met a surgeon, an inflammatory bowel disease nurse and a stoma nurse. If I was to under-go surgery, I would also be limited as to what surgery I can have due to my liver transplant. This meant if my colon was removed, I would receive an ileostomy. I was terrified, I was only 21. I did not want to make this decision yet.

As I have received a liver transplant, I was limited to what medication I was allowed to receive for my colitis. I was discharged from hospital still on high dose steroids and with the thought of needing surgery.

A few weeks went on and I became worse. The pain became unbearable, I lost more weight and I had to have time off university. I felt like I had taken one step forward and two steps backwards. I was due in clinic to see my liver specialist. I decided that it was my time to under-go surgery again so planned to telling him this! When I arrived, he explained to me there was another medication I could try before considering the surgical options. There was a drug which had recently been approved in the UK for the treatment of ulcerative colitis. It was called ‘vendolizumab’. It was an intravenous drug which aims to decrease the inflammation of the colon. Doctors were unsure what this would do to my anti-rejection levels in my body, they reassured me they would keep a close eye on me. I was willing to try anything in order to make this pain go away.

I was re-admitted into hospital so I could have this new medication so I was in a controlled environment. It took 30 minutes for the drug to go through and for 2 hours after , my blood pressure had to be monitored. I was told it would take around one week  to start working. I was discharged from hospital waiting for the unknown. Slowly, the pain went away, my bowel movements became normal and I started to slowly gain weight again. The medication was working!

Now I am currently undergoing a course of vendolizumab which means I have an infusion every 8 weeks. I am still not 100% but I know I am going in the right direction thanks to both the liver and gastroenterology teams. Over this last year a lot has happened to me and I do not think I would have got through it without the love and support from my family.

A few people I would like to thank,

Mr Perera- my wonderful and talented surgeon, who made me and my family remain positive through such a hard time. Cannot believe he still remembered me 10 months post-transplant.

Dr Oo – For diagnosing me and helping me come to terms with my illness before diagnosis.

Dr Hirschfield – For supporting me throughout the whole of this process. This process would not have been successful without him.

Monica Smith – My nurse, words cannot describe the support and compassion she gives to not just me and my family but all of her patients. She has made this experience a little more bearable. If you believe in angels she is one of them!

Finally – I would like to thank my donor and their family. I would not be here writing this today without them!

                                                                                                                         © Amy Davis


  Valerie’s Story

 

Val Pinney

I went to my GP back in 2000 because I had been suffering with diarrhoea for rather a long time. I was referred to a consultant, Dr. Ellis at the Horton hospital, Banbury. When he looked at my blood test results he found that I had the anti-mitochondrial antibody which can sometimes lead to Primary Biliary Cirrhosis. And unfortunately for me it did. This was confirmed in July 2007 and led to check-ups, various tests and scans over the years, which gradually increased as time went on. If I got an illness it would make me feel more unwell and for longer than other people had it for. The main thing that I suffered with was the extreme tiredness. I worked part time, lived with my two daughters (teenagers at the time), had a dog and a house to run, life was quite tough sometimes! I suppose for the last three to four years I really started to suffer, with last year being the worse. I also got ascites for the first time and eventually had two drains. A consultant from the John Radcliffe hospital in Oxford told me that it was looking like transplant time and in November my GP told me enough was enough, I just wasn’t fit to work any more, and he signed me off work. In December I went to see a consultant at the Queen Elizabeth hospital, who confirmed that I did now need a transplant very soon. In the first week of January 2015 I stayed in the hospital for a week and had all the tests for the transplant assessment. I was told that I was fit enough to undergo the operation and was put on the list.

I got the phone call in the evening of Saturday 22nd February. After swearing, crying, telling Robyn and Leah (my two daughters) and getting my last minute things packed, Robyn, Leah and Gary (my partner) set off for the Queen Elizabeth hospital. After I was admitted we all decided to try and get some sleep! I was taken to theatre for my liver transplant in the early hours of Sunday morning. My surgeon was Mr Mirza.

I think the operation went quite smoothly from what I have been told. But in the afternoon of the following day my family were told that the liver was failing, my arterial vein was too small and half of the liver was without blood. So I was put onto the super urgent list and again my family were told that another liver needed to be found for me within 72 hours. So just in time, on Friday 27th February I was taken to theatre for my second liver transplant. My surgeon this time was Mr Muiesan and he was assisted by Dr Mergental. This operation was a lot more tricky, took rather a long time, I had some infection from the failing first liver, I lost a lot of blood, and at a later clinic appointment I was told by Dr Mergental that they only just saved me in time.

Then followed my time in critical care. Obviously at first sedated, then woken up to start my recovery. But i was one crazy lady! I had such detailed dreams, which all involved the doctors and nurses looking after me, but were set in different places. But worse than that for my family, was that I was horrible to them and I was swearing, shouting, screaming. I was also like this to the doctors and nursing staff, refusing to have things done. I must have made it very difficult for them to do what they needed.

After a while I was moved out of critical care to the liver ward. Physically ready but definitely not mentally – I was still crazy there for a while! Then I got pneumonia … a very scary time, I just could not breathe. So back to critical care I went for further treatment. Thankfully I recovered from this too. 

When back on the ward again I slowly started to recover and got stronger with my walking. Apart from a few days when I got severe diarrhoea, didn’t feel well and lost weight, I also started to feel much better and after 5 weeks and 5 days I was discharged from the Queen Elizabeth Hospital Birmingham.

Now back at home some days are tougher than others but I am gradually recovering. I know I am very lucky to still be here today. My surgeons are now my heroes and I thank all the doctors and nursing staff from both critical care and the liver ward, that looked after me during my long stay in hospital. I am extremely grateful to my donor’s family and always will be. How can I ever forget them. My mum died just last year so I know what they are feeling right now and it’s not easy at all.

After reading this, if any of you would like to talk to me or ask me any questions, I am very willing to do this. I can be contacted through my email address – vpinfold03@aol.com. I also have my own website, www.mylovelyliver.co.uk where I am writing a blog about my journey.

                                                                                                                                   ©  Valerie Pinfold


 Gerry’s Story

 

img011 Mod small

Hi I’m Gerry King and I received a liver transplant at the Queen Elizabeth Hospital Birmingham on 30.3.2007. I consider myself very lucky to have been given this second chance as my illness was caused by Drug and alcohol abuse.

I was diagnosed with Cirrhosis of the liver and Hepatitis C back in 1996 after several years of alcohol and drug abuse. Previous to this my health had started to deteriorate, I had started to lose weight and to get pain in my stomach also I had noticed blood in my stools when I went to the toilet.

In June of 1996 I suffered major internal bleeding and had to be rushed to New Cross Hospital Wolverhampton where they managed to stop the bleeding, I spent nearly three weeks in hospital drifting in and out of a coma for the first eight days, when I came round I was told that I had got Cirrhosis of the Liver and Hepatitis C it was explained to me that the bleeding was caused by Esophageal varices which develop when normal blood flow to the liver is obstructed by scar tissue, seeking a way around the blockages the blood flows into smaller blood vessels which leak or rupture causing life threatening bleeding.

I was then told that if I continued to drink, the next bleed would probably kill me, I tried very hard to stop drinking after this but stupidly continued to have the occasional binge which always resulted in me having a further bleed.

Finally in 2001 after another bleed my Consultant at New Cross, Dr Kapadia who had saved my life several times told me that he would give up on me, it was a Friday afternoon and he told me to think over what he had said and that he would be back to see me on Monday morning.

It was the best thing that he could have said to me and I made my mind up there and then that I would never drink again, the first thing that I done was to make a promise to God that if he helped me I would become a better person and try to help others.

With this new determination I started to attend AA and to seek help from the substance misuse service Aquarius who helped me to beat my addiction. Although I finally beat both Drugs and alcohol the damage was done and the only option was a liver transplant.

It was explained to me that even though I had beaten my addiction the Hepatitis C would continue to attack my liver and that I would be considered for the Transplant list when the Doctors at the Queen Elizabeth Hospital felt that the time was right.

Over the next five years my health continued to deteriorate until I finally reached what is called end stage liver disease, by this time I was Jaundiced, suffered Ascites, swelling of the stomach due to fluid retention, and Encephalopathy which is a condition that occurs when the liver is unable to remove toxins from the body, when these toxins reach the brain they result in an altered mental state which in my case caused poor coordination of movements and poor judgment, sometime I would wake up not knowing who I was or where I was.

In October 2006 I was accepted onto the liver transplant waiting list by Dr Mutimer (now Professor Mutimer ) and his team. and five months later in March 2007 I received a liver transplant after which I spent a week in intensive care and a further two weeks in west 3 liver unit in the old Queen Elizabeth Hospital. Since then with the help of the wonderful   team of Doctors and nurses at the Queen Elizabeth, my family , my best friend Dawn , and all my friends, I have made a full recovery.

Since I’ve been given this beautiful gift of life, for which I will never be able to find the words to express my gratitude to my donor family, although I have been lucky enough to meet them, my life has come full circle, I am healthy and happy and I have now gone from addiction, to working full time as a drug and alcohol support worker for Recovery Near You in Wolverhampton where I am helping others to try to overcome the harms caused by Drugs and alcohol.

                                                                                                                                     © Gerry King


 

Marcus’ Story 

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It was 11:00pm on the 23rd of October 2008. This was the culmination of 6 months of pain, suffering and incomparable fear. I was told that a donor liver would be in the hospital unit by 5:00am and that I needed to prepare myself for transplantation. The news filled me with the most overwhelming mix of feelings I have ever experienced.

I was 21 years old and had 3 weeks left to live.

I was scared, helpless and questioning how I had ended up facing death at such a young age. I was so far from the young, seemingly arrogant and invincible boy I was a year previously. All I wanted now were my parents – they had battled the roller coaster of the last 6 months with me and were emotionally torn. My father, in particular, was finding the situation incredibly difficult to deal with.

I had been diagnosed with cryptogenic hepatitis in May that year and, through no fault of my own, had deteriorated in health and suffered almost every symptom of end stage liver failure. When only 10% of my liver was functional I was put on the transplant list as a final resort in October.

My father coped less well because of his medical background: being a general practitioner, he was only too aware of the implications of each set of test results and took every deterioration in my health personally. Being a man that had healed and treated for over 30 years as a professional, he now couldn’t make his own son better and I felt his helplessness everyday awaiting blood test results for yet another disappointment.

Seeing my father and role model cry was one of the hardest things I have ever had to deal with, and emotionally I found it very difficult to comfort someone I always looked up to for strength. This compounded my fear and for the first time in my life I realised that there are some things in medicine no one understands.

Coming from a family of over ten medical professionals, I have grown up believing that science solves everything. I was overcome with frustration, anger and fear when Professor Neuberger, a world-renowned liver physician of the Queen Elizabeth hospital Birmingham, told me simply “well we don’t understand that much about the type of hepatitis you have. It can go one of two ways: either you will improve and make a full recovery, or your liver will die and you’ll need a transplant. I’d say you have about a 50:50 chance”.

I will never forget the shock I felt as I heard those words. I searched his face for an answer, I thought he must have been joking, but soon realised there was no treatment. I had no choice but to wait it out and see what happened. I have never felt as helpless as I did then; fate was to decide my medical outcome.

The experience made me realise that medicine does not have the cure for everything. My foolish attitude and seeming invincibility I now see was a result of my family never having to deal with any life threatening illnesses before. Their heavy involvement in the practice of medicine made me feel as though everything could be cured by medical intervention or drug therapy. The reality was very different, there was nothing we could do but wait and see.

Earlier that year, just before I became clinically ill with my condition, I had graduated from the University of Sheffield. From the point I left home at 18 to go and live in Sheffield I thought I was fully independent, untouchable, and that everything in my life was because of my actions and nobody else’s. I acted as though I would never need any kind of ‘emotional support’ from anybody, especially my parents.

When my Mum and Dad would come up to visit I would often usher them away from my student halls so as to avoid my new friends. I didn’t want my friends knowing where I was food shopping or worse still, to see me with them! It’s not ‘cool’ to have parents at 18. I didn’t realise at the time that they would be the people I needed the most when all my friends were now getting on with their lives and I was left lying in a hospital bed, unable to get up and walk even a few paces. My family and particularly my parents were my biggest support and without them I wouldn’t have got through my illness or possibly even survived post surgery. My fear, loneliness and worry were all alleviated when I was with them and I felt childlike, as though I was safe from my inner disease in their company. During my time suffering from hepatitis, one of the most important things I learnt is how significant loved ones are when life doesn’t go how you planned. It is something that has fundamentally changed my perception that loved ones are the greatest support I will ever have and as a result, they will now always come first.

My life has changed so dramatically as a result of my liver transplant, particularly my perception of illness itself. Illness is a word that means so many things to different people. Illness for me at that time meant lying in an intensive care bed unable to move, on dialysis, with lines in so many blood vessels, drifting in and out of consciousness and in excruciating pain. I felt as though I had been gutted. In the months leading up to my transplant illness was also the meaning of having approximately 5 seconds of peace after I woke in the morning, before the reality of my uncertain future filled me with dread and fear.

Very few people get to have a second chance at life. Knowing how lucky I am to be alive affects me every day. Much of life is spent as time wasted: people become accustomed to feeling sad or unfulfilled, and struggle from one personal or work problem to another, failing to see positives and letting opportunities pass them by. Having been to the edge of life, to a point where I was told I was going to die, there is no way I am going to let myself waste this second chance.

When I was in hospital doctors would try and empathise with me, and although the gesture was appreciated, they knew as well as I did that claiming to understand what being close to death felt like was impossible. I am now in a position to understand the pain and suffering that patients go through, something that was proved to me when I spent time on intensive care unit ward rounds as part of my work experience before medical school. I could see the fear and desperation in their eyes when under the daily onslaught of medical questions. People want nothing more than to survive. I didn’t care what food I was being fed or how I was going to manage the bedpan, all I cared about was getting out and surviving. So many people forget how lucky they are just to be able to get up every morning and be free from illness. My experience has made me realise how important the smallest things in life are; post-transplant, the most ground breaking day for me was when I managed to get out of bed and walk to the toilet on a Zimmer frame with my dad supporting me. The smallest achievement can have the most fundamental effect on a persons life. This principal is something I will take with me for the rest of my life.

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                                                                                                                          ©  Marcus Metza


 

 

 

 

 

 

 

 

 

 



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