“The last five years may not have been easy, but I’ve learned so much about myself during that time”: Luke Peters reflects on his transplant journey
It’s almost two and a half years since my double lung transplant. This is a significant point in my overall transplant journey, as I’m approaching five years since my journey to transplant started, when all the testing required commenced that would finally see me go ‘live’ on the waiting list.
The symmetry of this moment is not lost on me and somehow feels more poignant because of it. I was on the waiting list for 28 months for my transplant and I am now 28 months post-transplant – a milestone which just happens to encapsulate this week, Organ Donation Week 2021.
My transplant journey has been far from easy, although I suppose this is to be expected, given the magnitude of what is involved. And although the physical scars have faded over time, the impact the process has had on me will always be there, in some form or other.
The way I chose to channel the turmoil of emotions I felt when I went on the list was to write them all down. As the months passed, the various scribbled notes here and there began to form something of a story – a journal of my transplant experience, I suppose. That journal eventually became a book about my life with CF, which I completed as I recovered from my transplant and shielded at home for much of 2020.
Given that I’m now at this milestone, and as I reflect on what both my family and I have been through during that time, I was asked by the Cystic Fibrosis Trust for Organ Transplant Week to consider what a letter of advice, should I sit and write one to my pre-transplant self, might say.
Despite the five intervening years since the day I was told that the time had finally come to begin assessing me for a double lung transplant, the feelings I have about that are as emotionally charged now as back then. I can still recall the anger, and the frustration I felt - the feelings of thinking I had let everyone (including myself) down. I can recall the sheer terror of what was to come, but most of all the overwhelming shock presented by the reality that I was now so unwell that a transplant was the only option left for me.
Having just written an entire book about living with CF and my transplant experience, you might imagine that writing a simple letter to my pre-transplant self would be a relatively simple undertaking. But the reality of doing so is not quite as simple or straightforward as it might seem.
I could write the letter simply stating not to worry and that it will all work out in the end, but that would be easy to write with the benefit of hindsight, and would be both disingenuous, whilst spectacularly failing to prepare myself adequately for what was to come.
Conversely, I could write a letter setting out a ‘warts-and-all’ description of what I have been through, detailing the arduous and seemingly endless amount of time I spent on the waiting list, putting my life and those of my wife and children on hold for all that time. I could go into great detail of the transplant process itself, my difficult experiences whilst in Intensive Care and the very difficult journey that followed immediately post- transplant. I could describe the frustration of the several months it took for me to get back on my feel and to feel anything like ‘me’ again, and the seemingly endless treatment that I have been through since to iron out the various wrinkles on my path to recovery.
But as everyone will tell you, the transplant process (just like human organs themselves) is not a one-size-fits-all experience and every single person who goes through it will experience something different. Making general statements of what to expect are likely to be swiftly swept away as reality and the exclusiveness of every individual transplant experience takes over
That said, there are certain common factors that apply to all going into the process; certain attitudes and emotions that should prevail regardless and it is those that I would focus on in my letter to my terrified, shattered, and fragile pre-transplant self.
Firstly, my advice would include to remember why you are going on the list in the first place and for whom you are taking that decision for. You must want it for others of course, but primarily enter the transplant process for yourself. Expect there to be many hurdles to overcome, challenges to be faced up to and probably some of the darkest times you will ever have to face. But despite that, focus on the amazing opportunity that awaits you on the other side.
Of course, you won’t be ‘cured’ of CF (people have actually asked me that!) and nor will you live a completely new life where CF doesn’t feature to some degree. However, you will be in a position that you have never been before. You will be able to do so much more and have time to just stop, to enjoy breathing again and live through a day without struggling for breath, coughing continuously, or feeling crippled from exhaustion.
I would also remind myself that (despite it being a cliché that is rolled out all too often), having a positive attitude as well as being as physically as fit as you can be going into the transplant process will serve you well as you come out the other side. There have been so many occasions over my transplant journey where hope has become not just a feeling mixed up within a maelstrom of others, but the single most important emotion to help pull me through – a mental health ‘lifeboat’ if you will that has kept me going through the dark times and long nights, both prior to and since my transplant. I wrote an entire chapter exploring the resilience of hope in my book, and in that chapter, I state that ‘when all is lost and broken, hope really is all that remains’. There have been many times when this has never felt truer.
I would tell myself to put faith in those caring for me, to know that the time ahead will be tricky, but to embrace the opportunity that having a transplant presents, and to remind myself regularly that ultimately the rewards will be unmeasurable.
As I look back over the past five years, I can see a whole host of emotions, both good and bad. But thanks to the generosity of my donor and their family, I am now fit and well and have so much to live and be grateful for, having been handed the ultimate in second chances.
It remains as important now as it ever was that everyone tells their loved ones what their wishes are for their organs in the event of their death, as there are thousands of people living on transplant waiting lists (just like I was not so long ago), right now as you are reading this, struggling to survive and hoping that today will be the day when the call comes that will give them their own second chance which will ultimately save their life.
As I say towards the end of my book, the last five years may not have been easy, but I’ve learned so much about myself during that time. Regardless of what my family and I have been through, I have so much to be grateful for, and so long as the good times of the future outweigh the bad times of the past, then I will be happy.
Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,600 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing. CF can affect various different organs in the body, resulting in the need for an organ transplant. You can find out more about CF and organ transplants here.
There are currently over 7,000 people in the UK waiting for an organ transplant, which is why it’s so important to make sure your family are aware of your wishes for your organs after your death. Families are far more likely to support donation when they can be sure what their loved one would have wanted. Find out more about talking to your loved ones about organ donation here.
Luke is the author of Coughing It All Up – Chronicles of a Remarkable Life despite Cystic Fibrosis, a memoir of his life. The book is available on Amazon or for order from all major bookshops. A share of the proceeds of the book is to be donated to the Trust.
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