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Some 15 years ago I was diagnosed with haemochromatosis, an excess of iron in my blood. This was being managed at my local hospital in Stockport. Every three months I received a venesection: a quantity of blood was taken to help remove excess iron. Blood samples were tested after each visit but it wasn’t until late 2011 that my platelet levels started dropping. This was closely monitored but the levels continued to drop and I eventually had a bone marrow biopsy. In February 2012, my local hospital confirmed I had bone marrow failure and I was referred within a week to the Christie Hospital in Manchester.
My wife and I realised this was probably something serious. We live only a few miles from the Christie Hospital; we knew it was the local cancer hospital and had friends that worked there. I didn’t understand why I had no symptoms.
I was semi-retired, working as an assistant to a visually impaired criminal barrister. We had worked together for 10 years and I thoroughly enjoyed it. We have three grown up children all living away from home. My wife and I enjoyed a full and active social life, we went on holidays abroad and had frequent weekend breaks in the countryside.
All that was about to change. I had my first consultation at the Christie – further blood tests had confirmed lower levels of platelets and they had tested some bone marrow tissue. I was diagnosed with hypoplastic myelodysplasia (MDS), a blood disorder with bone marrow failure. I was told the condition was serious and there was only one cure: a stem cell transplant.
Within a few days I started the first of many platelet infusions. I was told the transfusions could only be maintained for a few months. I was advised to stop working and to stop all outside physical activities. The stem cell transplant process was fully explained to us, and a search would begin for a donor. We were warned that this was going to be a difficult few months ahead and that it could take 12 months for me to recover.
Within two weeks a donor with a perfect match had been found on the Anthony Nolan register. Preparations were made in earnest – there were more bone marrow biopsies, a heart check up, lung function and dental checks.
I was admitted to the haematology transplant unit on the 18th May 2012 ready to face at least a month in isolation. I stayed in an ensuite room with no open windows and with very strict hygiene rules for visitors which were limited to close family.
The first week was taken up with chemotherapy conditioning, a very intense treatment and thoroughly unpleasant as the week progressed. I lost my appetite, was nauseous and had hair loss.
On transplant day, 24th May 2012, all went well. Two nursing staff sat with me whilst my donor cells were given by way of a transfusion. It was a painless process but at the same time an enormous event. My wife shared the experience with me. I had only been told my donor was a British male 25 years old; he knew nothing about me but his generosity was about to save my life, an amazing thing for a stranger to do. I’m indebted to him and Anthony Nolan for their support.
Recovery for me was long and difficult. I suffered many infections and viruses and I was admitted back into hospital several times for treatment. Fatigue was a major problem for me but I had support and encouragement from my family and my transplant team. Together they all worked to get me better.
It did take me over a year to fully recover and return to normality, like being able to see and enjoy the company of my family and grandchildren and to resume holidays and outdoor activities such as walking.
Two years after my transplant I met my donor, a young man called David who lives in North Wales. It was my opportunity to thank him in person for saving my life. He was grateful to have had the opportunity to help me. We keep in touch and on the 24th May 2022 marked our ten year anniversary, I tend to think of David a lot on this date.
Many people helped me get through the transplant process. I’m grateful to Leukaemia Care for their support; long before COVID-19 I joined their Manchester Haematology Support Group and attended the meetings at the Maggies centre, Manchester. The meetings now continue on Zoom and they are really interesting and informative, they also give you the opportunity to talk and share experiences with other members.
Could you save someone’s life?
To join the stem cell register, head to:
- DKMS – www.dkms.org.uk/en
- Anthony Nolan – www.anthonynolan.org