The technical stuff...

So I figured I should probably give a bit of background about how I came to this point of having the Transplant so here goes:


I was diagnosed with Very Severe Aplastic Anaemia (Bone Marrow Failure) after coming back from a spot of travelling in 2003 (no connection but thought I'd set the scene!).  The symptoms I had were shortness of breath (this was because of my low red blood or Haemaglobin (HB) so I was not getting oxygen to the brain), tiredness (again due to lack of oxygen), blood coming out my nose and appearing as a rash under my skin on my body (this was low platelets) and generally felt like rubbish.


Aplastic Anaemia is an autoimmune illness, basically instead of my immune system attacking invading bugs and colds etc... it attacked itself.   It meant my bone marrow failed and it is in your bone marrow that all your initial blood cells are formed, hence I stopped making my own blood...pretty essential for life huh!  The main components in blood are HB (red) for oxygen to organs including the brain, Platelets ( the clotting part of the blood so you stop bleeding when you cut yourself) and white cells (including neutrophils) which is your immune system.  NB: Please bear in mind that although I have learned a lot about my illness and bloods this really is a bit of an overview as best I can do).


The only cure is a Bone Marrow Transplant.  My brother was tested but was not a complete match and a related donor is the best kind so they opted for a different treatment called ATG.  This treatment gave me antibodies and suppression of the immune system to try and kick start it again.  It didn't work for everyone but thankfully it did for me...it involved being in an isolation room for about 5 weeks and feeling pretty poorly but I survived and after 4 months went back to work without needing any further blood transfusions etc...


So basically I was ok for about 4-5 years and my bloods came back up, I had fairly regular check ups and still took medication called Cyclosporin which maintained the suppression on my immune system.  It didn't really affect my life, or I didn't let it but I was aware of the things I couldn't do such as have immunisations, take certain medications such as Ibruprofen & Aspirin and have a baby to name a few.


I then started to get low platelets and to cut a long story short they discovered that my illness had started to turn into another one called Myelodysplasia (MDS also known as Pre-Leukaemia).  It was only present in some of my cell so not urgent that something was done about it but it would eventually tirn into a veryhorrid form of Leukaemia if left.  I had not choice from here.  It was not a shock as such as I was aware that there was a small percentage chance that it could have this change.  Unfortunately for me I was in that small percentage.


The Transplant became more urgent when I started needing platelet transfusions back sometime in summer this year, which developed into needing them twice a week (platelet cells die very quickly).  Your platelet  count should be around 150-400 mine was never higher that about 70 when I was deemed ok, they then dropped to 5-10 every few days, hence the need for transfusions, if you go too low you can spontaneously bleed from anywhere that means internally, in the brain, your veins can't hold shape anymore so pretty serious stuff.  I also had blood (HB) transfusions every 2 weeks, normal HB counts are around 12-15 mine were regularly down to about 6.  Basically these transfusions were now keeping me alive.


I was still working though and was proud of myself for still living a normal life.  It just never occurred to me to do anything other than just carry on really but I realise now that a lot of people wouldn't have.


So here I am...sat in my isolation room at nearly midnight having had 5 days of chemo, the next starts in 5hrs time.  I will do a separate blog on the transplant process/pre transplant procedures and finding a donor etc...