I can’t begin to express how many times I’ve put off writing this story, it has been a long time coming and I guess my main excuse, and you could say fear, is that I feel my story isn’t quite finished yet, but then again when is anyone’s? Given the amount of attention Organ Donation has been given in recent weeks I think it’s probably time for me to knuckle down and write it, it’s also the least I can do for the amazing people who represent Donna’s Dream. I do actually like to do my own bit of writing but it’s of the fictional variety, so you must understand this is all pretty new to me, but I thank you very much for taking the time to read this.

My name is Chris, I am 26, I suffer from a condition called Dilated Cardiomyopathy and I am currently waiting for a heart transplant and have been for the last 3 years. My story though does not begin there, nor is it as simple as that, it really began a long time ago, back when I was 9 years old and when I was first introduced to hospitals and heart problems.

Everything up until the age of 9, everything was, near enough, standard for most families of the 20^th century. I had a mother and father who divorced when I was around the age of 4 and I had two Brothers, Desmond and Daniel, who were both older than me. After the divorce I lived with my dad and led a mostly sheltered life with nothing much to define my early years, that was until my brother Daniel (pictured on the right) was admitted to hospital in 1995 at the age of 19, with shortness of breath and severe swelling of the ankles all caused by an enlargement of the Left Ventricle, AKA Dilated Cardiomyopathy.

The years following my brother’s diagnosis of the condition consisted of regular visits to see him in hospital following frequent re-occurrence of his heart failure. I remember that I spent most of my summer holidays inside hospitals with my brother; it became normality in all honesty. Medications were never really enough to consistently control his condition, but he was never considered ill enough to be placed on the Heart Transplant list. I often wonder how he would have been now, had he ever been placed on the list and what he would be doing with his life?

In February 2001 my brother passed away and effectively that’s where his story ended, I don’t think I will ever really forget the night he died, the feelings and emotions you are subjected to can’t be replicated by anything else in life. It really does feel like the world is turned on its head, I can still remember every move I made that night when I got home, even odd things like staring out of my bedroom at nothing in particular just stick in your head. It’s like your brain is working on another level completely.

The two years that followed were quiet and sombre really, except in 2002 when my niece Brieana was born. I think her arrival really helped my Mum and Dad, as neither of them were quite the same after the death of my brother, no parent ever would be. I didn’t really have a lot of opportunity to see my niece, as around this time I started to become ill.

You never really assume things like this will ever happen to you, In fact when you are a teenager you have this bizarre notion of indestructibility. I signed up to be a donor in late 2002 after my teacher came and told us the good we could possibly do for others. (Incidentally, I really do think that this should be part of the curriculum in schools and colleges, as education is a powerful tool!) I only managed to donate blood once, and the feeling I got from knowing I could be saving someone’s life was, well, pretty damn good! I got home after that and watched the episode of Dad’s Army where they give blood; you could say I was hooked by the whole thing.

Early 2003, was when all of my symptoms began to develop, but at first I never assumed for one moment it was the same condition my brother had, as it was later on that the family discovered it was genetic. I noticed my journeys to college became massively difficult, I could no longer walk and talk at the same time nor could I arrive there without feeling massively tired. In certain lessons my vision began to distort, an almost sensation of light-headedness. My ankles started to swell up after trying certain over-the-counter medicines failed to help with my inability to keep food down. It was after a night spent trying to sleep on a window sill, that I really felt it was time to visit my GP.

Fair play to the man, he knew straight away what my problems were, it was pretty obvious to me too, but I guess like I said before, you never really want to believe it can happen to you too. He wasted no time in getting me straight up to Hereford County Hospital, and there began all of the associated heart failure tests. My mum sat in with me when I had my Echocardiogram (basically an ultrasound for the heart) and she had become very upset by it, I should think that she felt completely helpless at the thought of another one of her children having to go through the same thing. My Dad tried to be relaxed but it was clear he wasn’t, he never really said much but I know he wanted to try and re-assure me.

The night of April 17^th 2003 was the first ever night I had spent in hospital, and it was one of the very few nights before then that I didn’t sleep in my own bed. I remember being half awake and half asleep, just not quite one way or the other. The next day the cardiologist had decided that I should be sent up to Queen Elizabeth hospital in Birmingham as soon as possible. When I arrived there it was basically the same procedure as in Hereford but I could never realise that it was here I would have my very own brush with death.

After a month of receiving treatment at the QE my condition had yet to stabilise, in fact I was suffering from Hypokalemia, which is basically a dangerous lack of potassium in the body brought on by being on so many diuretics to help offload my heart. Late morning on the 17^th of May I started experiencing severe pains in my arm and chest so I alerted the nearest nurse and the last thing I remember was the blood pressure cuff being put round my arm. It was at this point I suffered a cardiac arrest.

I never saw a bright tunnel of light nor did I see Angels with harps on clouds, all I remember was the indescribable blackness, it was like being asleep but being quite conscious within that sleep state but not dreaming. It’s quite hard to describe, but it’s not really something I would care to repeat that’s for sure. From out of the blackness I heard the voices of people saying my name, who I can only assume were the doctors and nurses resuscitating me and eventually I remember being fully conscious.

It was very much a week spent balancing on a knife edge, I didn’t realise until months later that my family had been told I had a week left to live unless I had a heart transplant. The possibility of a transplant had only been mentioned briefly a week or so prior to my cardiac arrest, during a meeting with the QE’s transplant co-ordinator Sharon, who appeared to be mortally feared by some nurses, but I found her quite friendly and straight forward. But like I said, it was only mentioned as a possibility at that point but now it seemed it was my final option, and over the next few days of being confined to bed in CCU and on masses of drugs to keep me alive, all of the tests needed to assess me for transplant suitability were performed and I was accepted for placement on the transplant waiting list.

That week in CCU is quite a distant and faded memory and all that is left are memories of all the tests and of course, the first time Sharon came and told me that they had found a heart for me. I can’t actually remember crying very much during my stay in hospital, but I do remember that at that point I did, for the best part of 10 seconds; it was a very strange emotion and one that can only be felt by someone else who has been in the same situation. My Mum, Dad and brother turned up less than an hour later and from that point we continued to wait for the final confirmation from Sharon, which felt like an unending eternity from my point of view. Sharon eventually arrived at my bedside but I could tell straight away from her expression that the heart wasn’t going to be mine, it just wasn’t viable. I can’t really remember how I felt but I do remember that I was allowed a cup of tea which I later threw back up again.

Days went by and those days turned into weeks, I had managed to fight through it all and start up a slow road to recovery. I was finally moved from CCU and was allowed back on the ward and given my slightly more stable condition, I was allowed to be transferred back to Hereford county hospital which, you could say, was a step closer to home. I remained on the transplant list in Hereford whilst being closely monitored via the telemetry system in the hospital, just in case I was to suffer another arrest.

I had learnt during my stay in hospital that this family heart condition went far deeper than my brother Daniel and me, I had actually lost two cousins to sudden deaths from suspected heart conditions and my second cousin had had a heart transplant in the QE. My diagnosis of Cardiomyopathy led to genetic testing throughout my mother’s side of the family, but to this day the gene responsible has yet to be found but it is pretty certain this is all familial.

By late June I had received a further two calls for a heart transplant, and had been rushed back to the QE on both occasions, but neither had led to a transplant. The closest I came was when I was wheeled down to the theatre and various tubes and wires had been inserted all over my body, you could say I was within a hair’s breadth of being transplanted and to this day, that is the closest I ever came. I often think about the ‘what ifs?’, and how things could have been so much different today, but it was clear it just wasn’t meant to be.

On July 4^th, Ironic given it was Independence Day for the American readers; I had recovered enough to be allowed to go home. Institutionalised just isn’t the word to describe how I felt after being in hospital for 3 months, it took a fair while for me to get used to being back home. I had changed in ways I just can’t describe; it was like I had gone through a mental regeneration as was as a physical degeneration, my need for independence had increased dramatically and I was no longer that inexperienced young lad who had never even cooked for himself. Things had begun to change in lots of ways.

I remained relatively stable over the course of the year, with several re-admissions to Hereford Hospital with fluid retention, each time roughly lasting 2 weeks. By late 2004 I had reached a level of fitness which, although medicated by various heart failure medicines, I hadn’t experienced before and I was happily removed from the transplant list. With this period of fitness, came the slow deterioration of my Dad. In effect I had become his carer now, regularly making trips in to town for shopping and paying bills. A reversal of roles had taken place in the household and thankfully I kept healthy enough to look after him.

In January 2005 my Dad passed away, followed two days later by my Nan who I felt I was particularly close to. Needless to say this was a very dark and depressive time in my life, but fortunately Cardiomyopathy had not decided to rear its ugly head like it had so inconveniently in the past. Times were hard then, and what I had gained with my physical health, I had lost in my emotional health.  Though I had lost so much this year, I had become much closer to my brother Des and his family, and I had even moved back in with my mother, who I hadn’t lived with since I was 6 years old.

Between the years 2005-2008, you could say I lived a near normal life. I had received a Biventricular pacemaker during this time, in an attempt to keep my heart in working order, and to be fair it did help for a while. I managed to keep a job for this period and felt as if things were going ok even though I always had the underlying illness. As 2008 went by, my medications, in particular diuretics, were gradually being increased to cope with a slow and steady re-deterioration of my heart again. By September of that year I found myself being re-assessed for heart transplant and it’s from there I started my current 3 year wait.

I would love to be saying that my wait has been uneventful, that I had managed to scrape my way through with relatively good health and remain stable, but unfortunately things didn’t happen that way for me. In September of 2009 after managing to wait a whole year, I was hospitalised due to my other organs, especially my kidneys, beginning to fail. I was placed in CCU in the Queen Elizabeth hospital, a place I had not been in for nearly 5 years, and given intravenous inotropes to keep my heart beating and allow my kidneys to rest from all of the diuretics.

I have to admit that during this period was probably one of the tensest times of my life, I can only guess the inotropes caused a reaction which made me feel overly stressed all the time but I really did find it massively difficult to settle, rest or even have much of an appetite. I hated the fact I wasn’t well, it was like I lost control again and all my years of hard work had gone to waste.  I had gained quite a few friends over the previous few months via Facebook, who were transplantees, including a certain young lady called Donna, and they all really helped me during this time and I will always be grateful for all of their kind words which helped keep me positive. Unfortunately, no hearts became available during this time, so it was necessary for a mechanical alternative to be considered.

I was given a choice between having an ITU based mechanical assist device called a Berlin heart and continue to wait for a transplant, or there was the alternative of being transferred to Harefield hospital to have the more portable alternative called a Heartmate II. The latter alternative meant I would no longer be classed as urgent and I would be suspended from the transplant list, but there was the possibility that the Heartmate would heal my heart, which could negate the need for a transplant completely. Given my youth, I really did expect that I would be one of the lucky ones who would get their old heart back, so I took the gamble and was transferred there. I am often plagued by yet another ‘what if?’ situation here.

On October 6^th I arrived at Harefield Hospital with my mother and was just in time to catch the surgeon before he went home for the night. The Operation began at around 10:30pm that night and ended at around 4am the day after. I have little or no recollection of events just before or following the operation, in a way I see this as my pseudo-transplant, as I am sure the experience is quite similar.

My first memories after waking were blurred and unusual. I always remember seriously believing that my mum had bought a pizza and was eating it behind the curtain around my bed and not offering me a piece, which is quite unusual seeing as she doesn’t like pizza. Apparently my language after having the intubation tube removed from my throat was pretty foul and course. I also remember having a conversation about Filipino tribesmen in the late 19^th century with a nurse who was looking after me in ITU. To this day I haven’t a clue if that was real.

As the drugs began to wear off, I found myself staring down and seeing the new addition to my anatomy, the Left Ventricular Assist Device known as the Heartmate II. It basically acts as a pump that takes the blood from the damaged part of my heart and pumps it back into my Aorta thus completing the cycle that my damaged heart is unable to do. When the doctors were happy with my recovery I was moved onto the main ward and introduced to the functions of the device, as well as undertaking cardiac rehabilitation.

Due to the fact I had gained a slight chest infection during my operation, my hospital stay lasted until November, when they were finally satisfied that my infection was clear, I was finally allowed to go home. During this period I was encouraged by the VAD team to partake in as much exercise as I could and to eat healthily, I had actually lost a massive amount of weight during the last couple of months so it was quite fortunate my appetite came back. This was all to promote the possible healing of my heart, but unfortunately this too was not to be. After a couple of months it was clear to the Cardiologists that my heart wasn’t showing sufficient amounts of healing, my heart had been subjected to many years of both minor and major heart failure and it just wasn’t strong enough to regain its own function. There were however, various signs that my heart began some sort of recovery as this was the case with most VAD patients.

After being subjected to the heart transplant reassessment which I had taken so many times during my adult life, the decision was made to re-list me for transplant. Two years after having the VAD implanted, my heart continues to show some minor signs of recovery, though nothing that could mean the actual removal of the VAD. Whether or not some medical breakthrough in the near future with stem cells or another alternative medicine takes place, it’s quite clear that my only current option remains a heart transplant. I really do try and remain positive about my outlook, and I have formed many special bonds with people around me who keep my mind away from all the negative thoughts that creep in after 3 years of waiting. I have no real Idea what tomorrow will bring for me, but I am fully aware of the massive shortage of donor organs, especially hearts, and I am realistic about my prospects. I am just massively thankful that there are those out there, like Donna’s Dream, who continue to fight the corner of those like me who continue to wait in hope of a better life.

Good luck and best wishes to all who have read my story.

Chris

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