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Catherine MacLachlan
This year will be my 12 year anniversary' of being a heart transplant recipient. My only give away is the faded scar on my chest, which I have not resented or felt the need to conceal ever since waking up after the operation. My story is a short one, 11 weeks to be exact, and compared to most other organ recipients, a short history of illness is a rare thing.
It begins on Easter Sunday 2006. After noticing that my heart was beating so strongly it was physically causing my necklace to shake, I felt the need to mention this to my parents, who are luckily both in the medical profession. After hearing a slightly irregular heartbeat, they took me down to the local A&E department in the General Hospital in Jersey where I underwent standard blood tests and x-rays to investigate any possible problems.
It is safe to say I was not expecting to be diagnosed with anything serious let alone severe heart disease. I seemed to be a normal' 15-year-old teenager who played hockey 4 times a week and enjoyed socialising. Whilst I was sat in A&E waiting for my Dad to finish talking with the doctors, I wasn't the least bit concerned. However, when he eventually re-entered my cubicle I saw his face and I immediately stopped smiling. He explained to me that my heart was surprisingly large for a girl of my age, which probably meant that for some reason it was too weak and had needed to increase in size in order to pump enough blood around my body. This condition is referred to as dilated cardiomyopathy. The situation had suddenly become serious. This was confirmed when it was announced I had been admitted into the Intensive care Unit to be closely monitored and have further investigations.
From Intensive Care I was transferred to Great Ormond Street Children's Hospital by air ambulance where the tests continued. My first memories of GOSH are very surreal. Everything seemed to be in miniature version. However despite feeling slightly out of place, the nurses and doctors made every effort to help my parents and I feel as comfortable as possible.
After being placed on a cocktail of drugs to try and delay the deterioration of my health, I had the talk'. I would have to say, this was probably one of the most terrible moments of my life. The transplant team coordinator, had the responsibility to tell me that at some point, whether it be in 10 years or 10 months, I would be needing a heart transplant. As she spoke to me, I was sat in my bed, staring at my magazine, trying to stop myself from breaking down into tears. Up to this point I had completely pushed aside what was happening, but reality suddenly hit and I felt helpless. Heart transplants were something you see in the news or on documentaries, yet suddenly this major operation was a certainty for me.
I was sent home with the warning that I wasn't push myself or do anything strenuous that would strain my heart. Much to my families and friends' horror, I
ignored this advice; I realise now that I was in some type of denial, but at the time I just wanted to prove that my diagnosis was wrong. I persisted on going to parties, returning to school and pretending the past few weeks had not happened. In these two weeks back in Jersey, I quickly began to feel my body shutting down. I would feel so nauseous after climbing a flight of stairs that I would need to lie down for half an hour. I was determined to try and save my family from worrying (even more) so I faked normality and attempted to disguise my worsening symptoms. The act did not last long, nausea completely gained control over me and after fainting I was immediately re-admitted into the local hospital. It was confirmed that my condition had gravely deteriorated. The following 3 weeks were a complete blur. The plan of action that had been decided on by the team at GOSH was to try and insert a pacemaker that would shock my heart back into a normal beat - should it decide to stop working. The last thing I remember was the night before my operation, sitting in my little bed and trying to distract my thoughts by worrying about how I could possibly cover the scar that was going to be on my upper chest; the Year 11 prom was only in a months' time. Naturally, I missed the prom.
Unfortunately the operation did not go to plan. The newly implanted intracardiac debfillator failed to re-start my heart when required and after being manually defibrillated twice I was placed onto a life support machine, and at this point I was put onto The Waiting List'. For 5 days I was top of this list, the sickest child in the UK (waiting for a heart) and I spent that next week heavily sedated on morphine in the Cardiac Critical Care Unit whilst the nurses and doctors worked non-stop in extremely cramped conditions to try and keep me alive. As my heart weakened, the blood flow to my other organs slowed to such a level that my gut stopped moving and my kidneys gradually but progressively shut down. Dialysis was prepared and my parents were whisked away to discuss things that thankfully I was oblivious to.
My poor family had to cope with the constant ups and downs but as the hours passed, the chances of getting a suitable heart in time became increasingly unlikely. On the evening of the 15 June, the doctors declared that I was nearly
th
out of time. They gave me one more night.
Meanwhile in Jersey, some friends had organised a service for me in the Sacred Heart church in St Aubin. Less than three hours after this service had ended, the nurse coordinator rushed to my parents to tell them that a heart had become available, a heart that could be a match for me. Call it what you like, a miracle, coincidence, but that night the astoundingly skilled surgeons performed the most incredible surgery and replaced my heart with a new one.
My first memory was waking up in a tiny dark room, an Intensive Care isolation cubicle, surrounded by staring bright screens. The room was accessed only by going through a series of air locks. I had so many tubes and leads attached to my body I could barely turn my head. My arms were covered in painful black bruises from all the injections and my muscles had disintegrated after being
unconsciousness for 2 weeks. My parents came in and steadily explained that I had been incredibly lucky and now had a new heart. I looked down at my chest and realised it was heavily bandaged, so I accepted they were being serious. Every few hours a tray of drugs would greet me but I can't remember having any pain so the nurses obviously took great care of me. The morphine caused me to have horrifying hallucinations and paranoia so a family member would stay with me, in a cramped chair by my bed, until I fell asleep again. There was so little space in my cubicle, and I felt sorry for my parents.
As the days passed I gradually began to feel more human. Home was now my only aim, and I was determined to get there as soon as possible. Alongside the medical treatments, I began intense physiotherapy to help build up muscle strength. I had to learn how to walk again as I could barely stand without support. I had to learn how to eat again as drugs hampered my appetite. Withdrawing from morphine was a new challenge. I cherished moments of normality, questioning my sister about her new boyfriend and gossip from home, being teased by my brother. I learnt to read the doctors' faces, so that I could predict if they were delivering good news or another slight complication in my recovery. Some eight weeks after my heart transplant, I was allowed to fly home.
My closest friends were waiting for me at the airport as a surprise, with balloons and welcome home signs. When I saw them, all my nerves vanished and relief flooded over me. They were still there and life as it was could hopefully resume. From that point I haven't looked back. I started back at school in September, not missing a day of the new term, and completed Sixth Form without a hitch. Before starting University I took a gap year and travelled around Australia and worked in southern Spain. I studied for a B.A. in Modern Languages in Durham and loved it. For my check-ups I attend Papworth Hospital and, when at home, the Cardiology Department in our local hospital in Jersey. I need to take tablets twice a day to avoid my heart being rejected, and I set my alarm clock just in case. I lead a normal yet extremely happy and active life and that is so much more than I could have wished for nine years ago.
As medicine is quickly advancing thanks to research, the level and effect of treatment is improving every day however for so many, transplantation is still the last option left. It gives people - whether they are a 15 year old teenager or a 30 year old adult- a second chance of life, and realistically it could easily be a more available option. It has been shown in a national survey that nearly everyone would be prepared to donate their organs however only 32% of the population nationally and only 13% in Jersey have signed up to the Organ Donor Register. Due to this, every day 3 people die waiting for an organ. I was painfully close to being one of those unlucky people, but luck should not need to play such a large role.
Please talk to your family about what you would want. Thank you.