Community AA Voices - personal stories All personal stories So, you don’t have a full match? Joining the haploid-identical club If you're reading this I assume you are preparing for, or are currently experiencing, a haploid-identical transplant, more commonly known as the 50% match. A 50% match donor is not the first port of call for medical teams but if you are like me, a mixed race male, there is every chance this might be your best course of treatment. There are many factors behind why you may receive stem cells from a 50% match, however, in my case the answer is simple. The bone marrow registry is lacking donors from ethnic minorities. An issue which is dear to my heart and one I know those at The Aplastic Anaemia Trust and Antony Nolan are trying to address. Yet, this is an ongoing effort and one that will benefit future aplastic anaemia patients. So, I had a 50% match, what’s the process and how was it different? Firstly, at this stage it worth saying that everyone’s experience is different so do not take my words as gospel. From my experiences and observing those who were lucky enough to have a 100% match, you will have a tougher journey with the haploid-identical transplant. Trust me, no transplant is a walk in the park but, as you would expect, not being a full match means just a little extra effort needs to be put in to get you over the finishing line. For example, the chemotherapy drugs used in my case were different to friends I had made who had a full match donor. Particularly, the use of cyclophosphamide caused me great levels of discomfort and made for a truly harrowing experience. I also saw myself spend a greater time in hospital then I had been led to believe. The Antony Nolan book on transplants, which you no doubt have been provided with, lays out a 3-week time frame. I would prepare yourself for a longer stay - hope for the best and prepare for the worst (a mantra I have found useful in my journey). In the end, I spent five months in hospital, split over two stays of two months and three months (I had two transplants). It was a tough time, as you would expect. Yet, it was made tougher because mentally I had prepared myself for a month in hospital and then months of recovery. Sure, this was naivety on my part but I was not given the full truth and all the information, which I hope I am giving to you now. Again, my experience is unique to me and your story is not written yet. But take two things from my experience: treatment for a haploid-identical match is harder and it is worth it. I finished my treatment as an inpatient and was discharged after a long five months. I had lost the ability to walk, shed 20kg of my body weight and had about as much hair as Matt Lucas. None of that mattered though because the transplant was working. It’s what my doctors call a 'flaky' graft, due to the fact my bloods have recovered to a point far below what would be considered normal range. This again is another key difference between us and those who have a full match donor. It is unlikely our blood counts will ever recover fully. Luckily, the human body is greedy and you don’t need normal ranges to live a healthy and safe life. However, for someone like me this would have been critical information - as I was obsessed with getting my blood test results! To this day I still carry round a wad of over 150+ blood results in my bag. I want to burn them when I deem this fight with AA to be over but unfortunately I have not quite got there yet. A strategy I have found useful is to stop asking for blood results as soon as you start to feel better. Mentally, they will drag you down every time a number drops, which often happens as your bloods fluctuate. If you feel well, then you are well (the medical team will let you know otherwise.) My recovery has been slow but steady and is nowhere near the end. I have noticed it has been much slower than a girl similar age to me, who I knew well when I was in hospital. She was lucky enough to have a 100% match which has enabled a faster recovery (one she thoroughly deserves because she has battled hard, as we all will.) With time I have been able to return to work and start to pursue leisurely activities, despite living in a COVID-19 world. To summarise, having a 50% match donor comes with its own trials and tribulations. Prepare yourself for a tough fight but hope for the best. If you are in the build up to the procedure, I wish you the best of luck and a positive experience. For those looking back on past transplants, I hope it was plain sailing and salute you for undertaking such a demanding and testing treatment. Hi there I'm Ben. I was diagnosed with aplastic anaemia when I was 22, and as a mixed-race male I had a more difficult transplant journey than some of the other people I met in hospital. Read more from Ben Read more AA voices AA voices AA voices is a collection of blogs in which people affected by aplastic anaemia share the stories they feel are important, in their own words. If you would like to tell your story here, please get in touch with Ellie, our Comms and Fundraising Manager, by emailing [email protected].