Diagnosis

I was diagnosed with Aplastic Anaemia at the age of 8. “Not too special”, I hear you say, but that was 50 years ago. I was diagnosed with this disorder that no one really knew anything about after having a tooth removed, which refused to stop bleeding. I was admitted to the local children’s ward (not children’s hospital). There was no treatment plan.
I was managed by my symptoms, so if bleeding - blood and platelets were given, and I was kept “comfortable”. I was to all intents and proposes treated as a guinea pig. I was not expected to survive.

Bone marrow transplant

After around 6 months of bleeding and being ‘topped up’ and still hanging around, someone suggested an experimental treatment from the US, called bone marrow transplant. My mother was chosen as the donor, the procedure was carried out and I was transplanted in the middle of a 20-bed children’s ward. The only drugs I was given where steroids, painkillers and antibiotics when needed.
I spent another 18 months in hospital, the majority of that time on the critical list.
In that time, I had all the “normal” issues we have today - they have not changed: bleeding, bruising, shortness of breath, the odd infection… did I mention bleeding and bruising??
My big thing was nose bleeds - not big gushing bleeds but rather the slow insidious ones that go on for days and weeks. I had my nose cauterized more than once, and thick heavy blood clots causing airway obstruction removed from my oesophagus more than once due to swallowing blood.

Life after transplant

After 2 years in hospital I was by some miracle deemed fit enough to go home but went back to hospital for daily check-ups for around a year.

Over the years I have had numerous admissions to hospital for all the 'normal' reasons - low blood counts/top ups, nose bleeds, the odd haemarthrosis. I think I’ve had around 1000 blood transfusions. And to start with, no irradiation of products, and again I was amazingly lucky to dodge the HIV/Hep C scares of the 70’s and 80’s. And of course, the graft versus host syndrome. Just amazing!

Back to school

I was given all clear to start school, which was the last year of junior school. My Mother was given the choice of me going to either a normal school or a ‘special school’; normal school it was. The next year I entered senior school and embraced sport, playing hockey, rugby and athletics. Around this time, I started judo.
Over the next 4 years I had the odd admission, but nothing too drastic. During this period I was ‘rolled out’ at medical conferences and case meetings.

Growing up

In my mid-teens I became very rebellious and anti-social, which I think was a combination of my disorder and being a teenager!!! For example, I started full contact martial arts and started smoking. I learnt how to manipulate adults to my advantage and used it as much as I could. I left school at 16 and after 3 medicals joined the Army, where I became a junior service man in The Royal Army Medical Services. I became even fitter due to all the physical exercise - running cross country. I trained initially as a field medic/paramedic. Then when I entered adult services at 17 years and 6 months, I started training as an operating theatre technician.

I had a slight relapse at 21 and while on sick leave, had to have a ‘mini laparotomy’ for removal of abscessed/ruptured appendix. I returned to the barracks and was medically discharged from the Army. Their reason was “if I got shot I would bleed” - go figure!!!

I started my RGN training the next year, and qualified in 1985. I did my theatre course the next year and have spent the last 30 years in various roles in the operating theatre.

Some insights from my treatment ‘back in the day’

As a child, the plastic cannula was not yet common place, so when was blood taken it tended to be with a green 21g needle (rigid) IV fluid attached and my arm would be wrapped in plaster of Paris, usually straight as cubital fossa was the vessel of choice. This could be sometimes several days. CSF/Trephines were taken - “no big deal” I hear you say, but the practice back then for some bizarre reason was NOT to use local anaesthetic in/on children.
Only once in all my admissions/hospital stays I was nursed in isolation - when they thought I had measles and one of the nurses was pregnant. Over the years I have had surgeries and medical problems but no real major issues.

My final thoughts

Yes, I have been amazingly lucky. I am glad to be here alive and reasonably healthy.

• I have become stronger both physically and mentally
• I am resilient
• I love life

There were no treatment plans in my day. I’ve had my ups and downs, as all of us do. I’ve been so tired!!! I’ve become very fatalistic… “if it’s going to happen”.

You can and will live with this disorder. Don’t forget the survival rate today is 80%. In my day this was 0%, and here I am 50 years on.

My advice to you:

• Learn to know your body
• Remain positive - You Can Do It
• You can contribute to society, you can do what you want!!!