ONE IN HALF A MILLION - Aplastic Anaemia.  My Story

For some weeks, I had not been at my best, feeling lethargic, tired and struggling to do the ordinary everyday things. Going to work, playing Golf and working in the garden all became constantly tiring.  Being 63 years old at the time gave me a great excuse not to make a visit to my doctor’s as I had put it all down to my age and it was just part of the ageing process, something that I would have to deal with and just get on with things. 

Fortunately for me my wife Carole was having none of this and made an appointment for me with my GP which resulted in a blood test at 9.45 am on the above date. I was informed that it would be a couple of days before my results would be available. At 5pm that same day I was on my way to Old Trafford to watch Manchester United’s opening match of the season when I received a call from my GP insisting that I take myself to Oldham Royal Infirmary’s A&E immediately as there were problems with my blood results.

The uncertainty

More blood tests when I arrived at A&E resulted in me spending the next 2 days in hospital receiving blood and platelet transfusions. At this point I hadn’t a clue what was wrong or what lay ahead. I was discharged on the Sunday evening without a follow-on appointment which lead me to believe that the problem had now been sorted, after all I did feel a lot better.

Two days later I was in Glasgow on business when all of a sudden, I started having a nosebleed, something I never have! I spent the next 2 days at the Royal Alexandra Hospital in Glasgow having blood and platelet transfusions. I explained to the doctor what had gone on previously and after a phone call to my GP back in Rochdale I was instructed to attend the haematology department at Oldham Royal on the following Monday.

Haematology, what’s that all about? I was now surrounded by people who were very poorly. This is when things started to sink in. After a lengthy talk with a consultant my wife and I realised that I was in serious trouble without having an exact diagnosis.

It would be nearly 4 months and after numerous transfusions, 3 bone marrow biopsies and a transfer to the Manchester Royal Infirmary (MRI) that I was diagnosed with severe Aplastic Anaemia, a rare blood disorder that only effects one in half a million people.

Bone Marrow biopsy (can be painful depending on the skill of the doctor carrying out the procedure. In total, I had 6 biopsies. For the most it was an uncomfortable experience, a feeling that is difficult to explain)

I was now under a consultant called Dr Saif at the MRI who explained what the diagnosis was about and the types of treatment that were available and what the survival rate was with the treatment for a person who was 63 years old. At first, I thought 80% gave me a good chance, but once I got to thinking about it, I started looking at it a different way - that one person in five won’t survive and that became all-consuming in my thoughts for some time after.

Treatment begins

The decision was made that I would be given the treatment called horse ATG. I was admitted to Manchester Royal between Christmas and new year 2016 and spent 3 weeks in isolation whilst the process went ahead. After the 4th week I was discharged with appointments to the clinic booked for the foreseeable. After several weeks I became transfusion free as my blood numbers had risen just above the transfusion level and for the first time in a while I thought of a bright future and spending precious time with my grandchildren.

All this fell about my ears when on 2 occasions I was re-admitted to hospital having contracted a fever, on both occasions spending another week in isolation on antibiotics and the occasional blood transfusion as my numbers had suffered.

Nine months post ATG I was told that it hadn’t worked. Both my wife and I were devastated at this news. We were then told that it would be possible to have a bone marrow transplant as long as a match could be found, and it would be the last throw of the dice, as they say.

More tests, more bone marrow biopsies and after what seemed an age, I was told that a ten out of ten match had been found and that the donor had agreed with the go ahead. Several weeks went by when I was told that a plan for the transplant had been made, I was also told that the donor was a 39-year-old lady from Germany but that was as much as they could tell me.

The transplant day arrives!

I was admitted back into hospital with my transplant planned for the 22nd December 2017 with a few days of conditioning prior. On transplant day I was told that the new bone marrow was flown to London and was on its way to Manchester via train. When the bone marrow arrived in my room it was accompanied by six or seven hospital staff who were involved in bringing all this together.

Those strangers in front of me ultimately helped save my life. I owe them a lot and can’t thank them enough.

The transplant went smoothly, spending 3 weeks in hospital and being discharged with my blood numbers on the rise. Cyclosporine became a twice daily drug for the following months and with its raft of side effects it was a constant reminder that I was a long way from being out of the woods.

My different kind of normality

The removal of the Hickmann line and the weaning off Cyclosporine were major milestones in my recovery. Clinic appointments were getting less frequent as all my blood numbers finally sat firmly in the normal range. I am now 2 years post-transplant with a visit to the late effect’s clinic now every 3 months. Things now feel back to normal albeit a different kind of normal.

I have been in touch with my donor via an anonymous letter delivered by the Antony Nolan Trust and received a fantastic reply (still no names or addresses). A second letter has been sent but with no reply as yet.

A huge thanks goes out to all those involved in saving my life, and a massive thanks to the one person who got me through all those ups and major downs, my wife Carole. Love you.