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Life changing and saving!

As I reflect on the past months I think of the saying " you never know how strong you are until being strong is the only choice you have"

At this moment I am working up to a life changing and hopefully saving stem cell transplant. After seven years of illness and my health gradually declining a diagnosis of GATA 2 deficiency means a stem cell transplant from an unrelated donor could cure most of my illnesses. Without a transplant I would most likely develop bone marrow failure as my marrow is already starting to decide it cant be bothered. My transplant will be at Kings in London far from home but the best place for my illness.

A stem cell transplant or bone marrow transplant replaces damaged bone marrow with new healthy cells in my case from an unrelated donor. The most common way of getting these cells from the donor is from their blood via a cell-separator machine its a bit like giving blood, blood comes out of one arm into the machine the stem cells are taken and the blood is returned into the other arm.

Before the transplant can begin there are many tests and scans a bit like an MOT. Then a Hickman line will be put in for taking blood and giving medicines after that conditioning will start, this consists of intensive chemotherapy and once your blood cells drop to a certain level you are ready for your new stem cells then waiting for them to graft. The journey to recovery is long and varies from person to person I expect it to take hopefully within a year.

As I work up to my transplant theres mixed emotions on one hand I am so happy and relieved to have a diagnosis and there is a treatment for me, but on the other hand its such a long unpleasant journey to get there and the journey has been so long already. My hope is that after years of reduced social life and only being able to work part time I will eventually get some quality of life back.

Afterall whats one really bad year compared to the past seven and the chance of getting my life back, my hair will fall out but it will grow back, I will be really sick but will all being well get better . . . . .

I plan to post on here when I can with pictures too,

coming soon my trial run of made to measure stockings for Lyphoedema and to reduce the risk of further blood clots!

If you would like to know more about stem cell transplants or being a donor visit www.anthonynolan.org

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