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I sat there with my sister Annette looking at the clock opposite us, at Clinic 6 at Glasgow Royal Infirmary, it was first thing in the morning and we had been sitting for nearly an hour, because my records had failed to be taken from archives. But however they eventually came and the long awaited call; “Mr Smylie?” rang confident from behind us.

“Good Morning, Sam how are you feeling?”, asked the Consultant Hematologist, as we sat down next to his disk, situated against one wall of a sparsely furnished clinic examination room. With a bed on the other side and a trolley of medical equipment against the other.

“Fine Doctor”, I replied considering I had just spent a week in hospital having all manner of tests, both routine and very painful, performed on me; after being told at my first visit to the blood donation clinic on Nelson Mandela Place just of Buchanan Street, in Glasgow City Centre, that I should probably go into A&E immediately.

I was 17 years old and all this was starting to get a little daunting for my young confident and growing mind. The Doctor looked at me confusingly, the way a lot of medical professionals were starting to look at me these days, not that I have, by this time, came in contact with a lot, apart from my GP and friends and family working within the field.

“Explaining this can be difficult”, started the Doctor, my sister shifted in her seat,

“Try your best Doctor”, I prompted,

“Okay, you have a rare Bone Marrow Failure Disease called Aplastic Anaemia”, I stared at him blankly, so no cancer? I thought.

“It caused by the bone marrow failing to produce blood cells to a particular degree that it may become fatal”, the Doctor went on to explain, now I shifted in my seat, my sister remained still.

“From what we can see you don’t have any underlying conditions that may have caused this to happen, we are unsure is it is hereditary, because we just don’t know. However your condition seems to be stable and not fatal”, chimed the Doctor as I struggled to take everything in.

“But Doctor, I don’t feel unwell at all”, I protested.

“Most people with this condition look and fell absolutely fine until the “final stages”, in other words if we hadn’t found this condition your bone marrow may have continued to fail until there was nothing left”.

So we left the clinic, and for the next 6 years I attended the same clinic, talking with the doctors and giving blood samples. No real complications ever came about apart from some very severe infections, that were caused by my lower than average white blood cell count.

However I was feeling deflated because dreams of becoming a Police Officer or joining the Armed forces were now non-existent, my girlfriend left me because she couldn’t cope with my growing depression, another added weight came about when I lost my father not long after diagnosis to Lung Cancer.

So I decided to work hard at university; which eventually paid of when I was offered a job with a large and respected IT outsourcing company, with great benefits and a career plan which will challenge me and allow me to mature and develop as a professional. Then after six years of stability everything failed, literally failed. My bone marrow had started to fully pack in, and from being able to run 1.5 miles in about 12 minutes I couldn’t walk half a mile without feeling breathless, frustrated and tired. I began to bruise easily, as well as bleed regularly from my gums and nose. My active life of weight training, running, swimming and learning to snowboard halted.

My social life became non-existent, as I could not go to busy places, work became increasingly more difficult (resulting in me being taken to hospital on Saturday afternoon), and then cam another blow.

“I would advise you not to go to your new employer this year”, advised my new consultant, who had taken the case because of the rapid decrease in stability in my condition.

So there I was on the telephone with the man who had hired me into my new high flying job explaining to him that I couldn’t accept the employment due to my decreasing condition.

I had lost my job, and my freedom then the biggest heart wrenching feeling came as I was advised that I would need to have a Bone Marrow Transplant or things could become getting a lot more difficult and very quickly, I obviously accepted and now here I am.

Never less the past year hasn’t been all bad, by my side I have had my very own guardian Angel, my beautiful girlfriend Rochelle has stood by me through all the disappointment, all the fear and the increasing feeling of frustrated anticipation as knowledge of the future is out of our reach as human beings. With her help I have managed to stay calm, collected and proactive in my treatment. To date I have had 4 blood transfusions to decrease the risk of heart attacks, organ failure or strokes, as I await for my transplant.

I have been in touch with the Aplastic Anameia Trust, the only charity in the UK that focuses on helping people with this rare disease, as only 150 people are diagnosed in the UK every year. That is equivalent to 2 in 1 million people in the whole Western World. Aplastic Anaemia is a killer, just like cancer, it sucks life away each and everyday and the survivors are truly inspirational people.

I still fight to this day, as the BMT draws ever nearer knowing that at the other side of an email, or a telephone I have someone there for me. But most importantly as my condition continues to get worse my angel is still by my side, hand in hand, until that day when I am better, and I can be the man I always wanted to be too her.

 

 


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