Daniel Fletcher’s story

 Daniel at home –  ready for anything on the menu 

I was born with a rare condition called Classic Maple Syrup Urine Disease. This illness restricted me to low protein foods and drinks – a diet made up of fruit and vegetables. I was often sick and needed lots of blood tests, nasogastric feeds and hospital admissions. This all made me lethargic and weak, spending lots of time playing video games and watching sport on television.

Maple syrup is very dangerous if not properly controlled. The body breaks down its own protein and increases levels of a toxin called leucine. The symptoms are vomiting, headaches, an unsteady gait and brain irritation.

We first heard about a liver transplant as a possible treatment for MSUD from a newsletter published by a MSUD support group in America. In my late teens my condition was more difficult to control and I had a few very bad episodes in hospital. There was talk of a liver transplant but we needed to be sure that the benefits would outweigh the risks.

On 10^th June 2014 I had an appointment with the metabolic consultant Dr. Clodagh Loughery to assess my condition. The leucine levels had become very volatile and my quality of life was poor. As Clodagh was reading out recent blood results she noticed that my weight had dropped significantly.

She went on to ask if I had ever thought of the possibility of a liver transplant as my condition was very difficult to manage and wasn’t getting any better. At first I was stunned. Was a transplant a possibility? Would it cure my condition? What was the recovery time? We discussed the procedure and possible side effects, with Clodagh explaining to me that one of her patients who had received a transplant in Bristol was now living a healthy life. It was remarkable to hear the possible outcomes; I would be able to play golf and football, go running, finish with low protein foods and eat normally.

After talking for over an hour, I drove home to report all I had discussed with my mother Gloria. To this day I don’t know how I made it home. My mind was on the endless possibilities following the operation: I could travel to see my beloved Manchester United win football matches; I could have  relaxing holidays in the sun with my family, never worrying about what food I could eat or enduring  tiny portions and endless fluids every day. It would give my family comfort knowing that I could do the same things as everyone else.

When I got home and started to explain things to my mum, she knew something was wrong. When I told her about the possibility of having good health and being able to eat normally after a liver transplant, she was in shock, crying teats of sadness and  joy. She asked me what I thought. At first I said I needed a few weeks to come to terms with all the information but as the weeks progressed it became clear that it would be great to have a healthy life and eat a variety of foods. My mum had been reading up on liver transplants and how patients in Pennsylvania were  recovering after transplants.

The weeks and months went by and we got more information about what to expect. We then had a conference call with  Dr. Mazaregos in Pittsburgh Children’s Hospital who explained about the transplant and how long the liver may last and the dangers of having the procedure. It was important for the rest of my family to hear what a doctor with experience of other children with MSUD had to say. The success rate was 97%. The call lasted 1 hour and 30 minutes and at the end of it I was reassured that there was no reason why a young, fit, healthy guy should not have a normal life.

The next couple of days were tense, trying to come to terms with all the information but in my mind I knew it was the best thing for me in terms of all the possible foods I could eat – steak, chicken, chocolate – and the opportunity to go to the gym and build up my fitness and strength.

In July 2014 we received a letter from Kings College Hospital in London to say they would like to see me for assessment. Mum and I flew to London the following weekend to see the consultants and the surgeons. Our four days there were intense to say the least, with numerous blood tests and examinations. However, the results were positive, indicating that I was fit for a transplant. My name was put on the list. I came home excited and anxious, waiting for the call that would tell me a liver was available.

The new year 2015 should have been very exciting one for many reasons.  I had bought a new Golf 1.6 and was due to collect it on 27^th January. However, with me becoming weaker, having very little food and being up and down to the RVH for bloods every day, I wasn’t really looking forward to the new car arriving. But on Thursday 28^th January my granddad Jack and I went to collect the car. When we got there I thought, ‘Wow, it looks class, all polished and looking the part.’ I drove it home and parked it in the garage, not knowing what was to come.

On 30^th January, Jack, Gloria and I were heading to Belfast with bloods, me looking really unwell.  I became sick and began to vomit as we headed home, so we turned straight back. After lots of fluids and routine blood checks, it became clear that my condition was worsening, so they transferred me to intensive care, where there were no immediate signs of improvement. There was some slight improvement as days and weeks progressed, so they transferred me to HDU where I was monitored round the clock for continued treatment. After six weeks the consultants’ conclusion was that it would be best to transfer me to Kings College in London where I could be monitored more closely. Once I became stronger and able to eat properly, I would be ready for a transplant.

I was transferred to Howard Ward in the first week in March. The staff  were very pleasant, helpful and friendly. Once on the ward we spent two and a half weeks getting to know the staff and consultants, who got to know more and more about my condition. Dr Suddle was in charge of the welfare of liver patients and he did his rounds on Tuesday mornings, hearing how each patient felt that day and giving them an update on their progress. Regarding the transplant there was no news as yet.

Before my operation I had a chance to visit St. Thomas’s Hospital, which was a great experience. My consultant was Dr. Ramachandran, a lovely person who was very helpful and chatted to me about MSUD and how it led to me needing a transplant. The metabolic team explained the need for bloods to be monitored before the transplant and demonstrated how they were to be done at 4.30  every morning for the lab to analyse them at 7.30. For me this was a challenge because so far I had never done this without Mum.

On 26^th March I was up at 4.30  doing my bloods because they had to be in the lab at 6. I went to reception to drop off the sample. I then went back to bed but was told to get ready because there was a donor liver available. I was stunned, nervous and excited. It happened so fast. They dressed me down in the shower and rinsed me through so that I would be ready for theatre in 45 minutes. I left the ward at 5.30. As the consultant and the team were wheeling me down the corridor, I turned to mum and said, ‘This is why we are here.’

I went into theatre at 7 a.m. and the operation lasted between 4 and 5 hours. I was out by midday, spent the afternoon recovering and in the evening sat up in bed talking to my mum and looking forward to the rest of my life of excitement and endless selections of food. I was in lots of pain but the medication helped to ease it and as the days went by I became gradually stronger and my appetite was returning. I was instructed to exercise as soon as I had the drips out. I began by walking round the room to see if I could manage the pain. After a few days I was walking up and down the corridor, slightly further each day. The physiotherapist was a great help in getting me back on my feet.He showed me a few easy exercises to start with and we built it up from there.

I was in Kings College for 2 weeks after the operation, getting stronger each day.  The support back home was incredible, with everyone praying and asking my family, ‘How is Daniel?’ When is he due home?’ At this point I couldn’t wait to get home. It had been a long road but worth it in the end. On 8^th April the ambulance service escorted mum and me to an airfield where there was a private plane waiting to take us back to Belfast. Back in the RVH I was taken to the liver ward for treatment, where they assessed my condition, did routine blood tests and adjusted my medication according to the results. It wasn’t long before my 26^th birthday. My family decided to take me out for a lovely meal and to allow me to explore the choice on the menu. There was plenty to choose from but it was a no-brainer; I ordered an 8 oz. sirloin steak with pepper sauce and champ. It tasted delicious. The flavour of the sirloin was incredible.

Life after the operation has been incredible for my family and me. We travelled to America for 3 weeks in the summer with friends and there were no signs of complications. My health was very good and I did plenty of exercise and routine sightseeing. The next adventure I went on was to watch the British Open. It was an amazing experience. I was able to walk round Royal Troon golf course with no discomfort, pain or lack of breath. Watching my favourite golfers in action was something I could truly savour. The most pleasing aspect was that my energy levels were high after a long day. During that week at Troon I learnt a lot about my condition and what i was able to do and not do. Since my operation, I’ve had routine check-ups every 3 months to monitor my tacrolimus levels and to check for signs of rejection.

In the last two years I have noticed an improvement in my stamina. I can do much more exercise than I could previously.  Looking back on the journey there have been highs, lows and some depressing periods but I would go through it again because it has changed my life for the better.  I would like to thank the Kings and RVH teams of medics and consultants for the continuing support.  I feel very privileged that they have given me the opportunity to enjoy all the challenges that the future holds.

DO I BELIEVE IN MIRACLES?

(Cherril Blair from Ballymoney recalls the joy piecing her life back together again, following her transplant in the Spring)

May I begin by expressing my gratitude to everyone in the three hospitals where I was treated – the Royal, where I was  nursed, informed and prepared for what lay ahead by a tremendous team;  King’s College Hospital where my surgery was carried out and the Causeway in Coleraine where my visits became longer and more frequent from 2011 onwards.  I have met so many wonderful people but each seemed to know everything about me – even my love of porridge.

I was placed on the transplant list in March 2013 and gritted my teeth for a long wait – perhaps two years or more.  Despite increasingly frequent bouts of encephalopathy and ascites, I thought I was doing O.K., until after one year I deteriorated suddenly and was admitted to the Royal, feeling pretty low and with failing recognition of my situation.  Four weeks later I was transferred to King’s where I received my liver transplant in early March.

Coming round, I knew I had  a liver for I could see John clearly for the first time in weeks- and he was grinning.  So was I.  From that morning I gave thanks to the family who had thought of others in their time of grief and that has been my waking thought every morning since. Despite the drains and tubes, I was in a state of euphoria.  There were blips but I could not take them under my notice.  When I recall my response to enquiries from medical staff, family and friends, I can only remember how my life had been saved and how dismissive I felt of their problems.  I was so well supported I flew through the next weeks and was soon back in the Royal for recovery.

As I lay in a quiet room, gathering strength, I had the first hints of further incredible experiences ahead.  Memories of my former life washed over me like a tide.  I would wake up chanting the phone numbers of friends – in particular my friend from school days whom I had not been able to visit for four years and whom I had not been able to phone for at least two.  John took down the numbers and soon I was in contact with Olive.  Beth, my support for three years, was able to visit.  From cousin Doreen I caught up on family news. As soon as I could operate my mobile, I set about phoning friends.  I could not stop talking.  My grown sons, who had visited me constantly, chortled as I began to take an active motherly interest in their lives again.  When I caught myself commenting on their hairstyles – they are in their mid-thirties – I stopped and bit my tongue.

The tide became a tidal wave as more questions occurred.  I had to be reminded of friends who had passed away.  I wrote to bereaved families whom I had been unable to visit.  Thankfully John made sure the letters were suitable.  I was reminded of family events, the birth of children, the lives of nieces and nephews, my brother and sister and their families.  My most welcome update was on the development of my four lovely grandchildren and the details of my two year old youngest grandson, with whom I could not wait to engage.  Hearing about the grandchildren was the pleasure of my life.  Would they remember me after three months?  They did.  My two lovely daughters-in-law were constantly in touch.  They had coped with young families alone to allow my sons to visit me.  I began to appreciate how much my illness had affected my loved ones and how much I had to catch up on.

Many of the medical staff remarked on my personality change.  ‘But this is me,’ I kept saying.  I was dependent on their approval and kept checking that I was doing the right thing for my liver.  Having been advised to feed my liver and not eat the small amounts I allowed myself as a person with diabetes, I gloried in steam pudding and custard.  Thank-you, Pat.

I was discharged home and the tidal wave became as tsunami as I took up the reins of my life again.  I visited my mother frequently, catching up on her life as well.  After three months’ isolation, my discharge led to a stream of visitors.  I was in heaven.   In three months I could drive and John and I could have some personal time.  We became used to doing everything together, even my visits to the hairdressers.

With plenty of time to think, I appreciate every day the expertise and kindness which have saved my life and developed me as a person.  Do I believe in miracles? Yes.

My liver problems really started thirty years ago although they did not show until this past ten years. When I was about twenty five I developed ulcerative colitis and had some treatment for it which went very well, what we did not known at the time was I should have been on treatment for it all along and went on to develop PSC.

Having been at the blood donors a Nurse said my blood was low in something and to get it checked, which naturally, being a man, I did not do.  The next time a different nurse told me the same story and this time I did get my blood checked to discover I had a substantial tumour on my liver.  After a great deal of discussion it was decided to have a look and see what shape the liver was in. Went for an operation and when I came to after I was to discover that the Doctors, Diamond and Taylor had removed sixty percent of the liver and had got all  of the tumour removed and that there was no need for treatment as it was a primary tumour and they got it away with “margins”.

What was left of the liver was unable to sustain my body’s needs.

We had to carry on with life and no word of a transplant having had cancer they would be reluctant to put me on the list while in remission from cancer.

After a few years the threat of the cancer returning had lessened and I was put on the transplant list where I was to remain for the next couple of years.

During this waiting period we were to receive the best care possible in the RVH liver unit where the Doctors and nurses have became firm friends.

When the call did come to head for Kings in London our transplant co-ordinator Ami had us flown out of Enniskillen to Biggin Hill and then by ambulance to Kings Hospital .

The first Liver that I was to receive was not suitable but the next morning Ami came and announced that another liver had presented.  All hell broke loose and eleven and a half hours later I had a new liver fitted after which I spent eight days in Intensive care and cuckoo land and six days later I was back in 6D in the RVH in Belfast

What surprised me most was that at no time was I ever sore or in pain.

I would like to give thanks to my donor and to let their family know their loved one lives on.

To all the Doctors, Nurses and medical people we would like to thank them for their medical knowledge and help, to Myrtle and our family especially Dr Olive for being there this past seven years.

We did not do this all on our own, some ONE was watching out for us.

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The story of one little boy’s battle with liver disease early in his life

My name is Megan and when I was 18 years old I gave birth to a bouncing baby boy on the 12th of April 2010. My pregnancy and the birth were perfectly normal so I was discharged from hospital after two days, with a follow-up from the midwife a few days later.

When the midwife arrived we discussed Kody’s weight and skin colour, as he wasn’t gaining very much and was slightly jaundiced.  Things never improved and the advice I was given was to keep him in the sun and it would go away in time. When Kody was 7 weeks old his stools went very pale (almost white) and also very frequent. I rang the doctor on call as this was a Saturday.  I gave all his symptoms and was told that it sounded as if Kody was lactose-intolerant.  I was advised to take him to the GP first thing on Monday morning with a stool sample.

So, on the Monday morning off I went.  On arrival the doctor asked me to give all Kody’s details.  After one look at him he said, “I don’t mean to worry you but you need to get Kody straight to hospital”.  What was going on in my head at that moment in time is indescribable! So that’s where the journey started –  the long,  bumpy one.

When we arrived at our local hospital we were taken straight to the children’s ward. They took blood samples straight away.  About an hour later the results were back and they were able to tell me that there was something abnormal with his liver but they couldn’t pinpoint what and more tests would need to be preformed.

So over the next eleven days every test you can possibly think of was performed from X-rays, scans to isotope  scans – so much for such a little boy but a very strong little boy. On the 11th day a team of doctors crammed into the side room and told me that Kody had to be flown to Birmingham Children’s Hospital to get a life saving operation as they thought  Kody had biliary atresia.

So that morning we were on a plane to England – scary I know. When we got there Kody was changed for theatre and everything was good to go until yet again a swarm of doctors gathered in the room to tell me that they had got it wrong and Kody actually had a liver disease called Alpha-1 Antitrypsin deficiency. From that moment on I strangely felt relief. I knew it wasn’t going to be easy but I knew that he was a fighter. I was given lots of helpful information, met so many lovely people and after three days Kody was discharged on five different medicines and new formula milk.

With regular check- ups at our local hospital and Birmingham once a month, Kody’s weight began to dip.  After trying

Kody with his brother

extra calories in his milk, he still struggled to put on weight. When he was 16 weeks old, his consultant back at BCH, Dr.Pat McKiernan, decided it would be best  if  Kody had a NG tube fitted to help him fatten up. That was another week’s stay over the water, but thanks to Ronald McDonald House they make you feel right at home when times were hard.

At 20 months old, Kody had his NG Tube removed and things have gone well for him in the following months.  We’ve had a few spells in hospital, appointments coming out of my ears, liver function tests that go up and down like yoyos – but through it all he has developed into a boisterous little boy who he has never once complained.

Now, almost 4, Kody is a proud brother to Leo.

Cara Hearst had a life-saving transplant at King’s in early 2009. Since then she has recovered well and recently qualified from Queens as a fully qualified nurse.

Cara and Amy at transplant games dinner

Her younger sister Amy has been close to Cara through all her highs and lows.  Amy began an undergraduate course in Physics at Southampton University in September 2011 and has carried her passion for the cause of organ donation onto the campus by forming a society called SUODA – Southampton University Organ Donation Awareness

SUODA is made up of a few committed members. They have held awareness days on campus including a bake sale and a stall. At their first event, members signed up 15 people to the register. They recently collaborated with Southampton Hub to do an online photo campaign. Students around the university were asked to write on a whiteboard their reasons for believing in the benefits of organ donation. They could tag and share their photos on Facebook and were entered into a prize draw. Each photo had a link to a specially commissioned website so that the number of people signing on to the register could be counted.  As a result, 193 new people signed on. The society has plans to keep getting more people signed up and to educate the student population on why joining the register is so important.

Interviewed as President of SUODA for a local paper, Wessex Scene, Amy spoke of the society’s story so far and its plans for the future. “Organ donation is not something that I gave a lot of thought to until a few years ago when my sister suffered liver failure. She was 18. She was taken by air ambulance from Belfast to King’s College Hospital in London and put to the top of waiting list for transplant. She was fortunate enough to undergo a successful liver transplant after a three-day wait. Unfortunately, there are people suffering for years with chronic illnesses, waiting for transplants because there is such a shortage of available organs”.

“It wasn’t until a friend at St Andrew’s told me she had joined an Organ Donation Society at the university that I thought I could do something to promote organ donation. I contacted the society president and asked what sort of things they did. It was a new idea being funded and tested by NHS Blood and Transplant in Scotland, to raise awareness amongst students. There isn’t a lot of funding available but I thought I could start one here at Southampton because all we really need are interested people, a room to meet and some decent ideas!

SUODA is for anyone and everyone, even those already on the register.  Medical students and students of any of the allied health professions may find the society interesting and relevant but no matter what your course, we hope that membership will be worthwhile.”

 

My mum, Erica Ferguson, is a two time liver transplant recipient.

She had her first transplant when I was 8 years old. At the time it was such a blur. Being so young I didn’t fully understand the ins and outs. I simply assumed that my mum needed a liver transplant and so she would get it. And that was that.

Fortunately enough my mum did receive a transplant but the only reason she got it so quickly was because she only had two days to live and so went right to the top of the national register. Even now it’s hard to digest that information.  I could have lost my mother at such a young age.  Not fully understanding the situation, I would have regretted it deeply as I got older, feeling that I would not have had the closure needed.

Thankfully though my mum survived her transplant but the hard times weren’t over yet. Two years later her liver started to fail again and she went back on the list for her second transplant. Only this time it wasn’t as quick.  We waited until April 2004 for the second transplant, which was also thankfully a success.

Now nearly ten years on my mum still has a lot of health problems but she gets up every day, tackles everything that needs to be done and is so unbelievably thankful that she has received the gift of life not once but twice.

My mum, myself and the rest of our family are eternally grateful not just to those who donated the organs that

Erica at home with Kirsten and Gary

allowed her to live but to every other person who has signed up to the organ donor register. My mum is now chair of the Northern Ireland Transplant Association (NITA) and campaigns endlessly promoting organ donation and the gift of life all over Northern Ireland. I am so incredibly proud of her and thankful that she is still here to be my mum and an amazing advocate for organ donation.

Seeing my mum do such great work through NITA, inspired me to join the committee as assistant secretary. I enjoy the fact that I can help make a small difference in organ donation. I love attending Freshers Days’, talking to other people my age and encouraging them to sign up to the organ donor register.  I hope to continue this and get as many people on the ODR as possible.

I would just like to take this opportunity to thank everyone who supports organ donation.  It truly is the best gift you could ever give. If you are not an organ donor please discuss your thoughts and wishes with your family; it is vital that they know how you feel as you have the opportunity to give someone a second chance of life.

Kirsten Ferguson