So when it has been decided that you are to have a Bone Marrow Transplant it starts off a whole sequence of events and tests etc that need doing and I will attempt to remember them all here...
I came to see Professor Judith Marsh, my consultant of 8 years, here at Kings College Hospital for a check up, knowing that I was needing platelets etc.. and she said those words...'Sally I think the time has come to start looking for a donor for you and doing a transplant...how do you feel about that'...
Well how did I feel about that...actually as scary as it sounded, it was also a relief to have some actual action and more certainty about what was happening. Holding on and waiting for results and waiting to see what my consultant would say this time was very stressful.
So there we go it meant I had some special blood tests and they were sent to the Anthony Nolan Trust who manage one donor register. It was then a waiting game to see what they came back with, of course there was always a chance that they wouldn't find a match at all...I tried not to think about that. In the meantime I was having what they call supportive therapy in the form of platelet transfusions and blood transfusions.
I was still working full time so I fitted them around that. I was tired and generally didn't do much when got home after work but managed a relatively normal life. I suppose I felt that was the logical thing to do, just carry on. I know friends and family were worried I was doing too much but at the time 'financial issues' were my main concern...I couldn't afford to start my sick leave too early, that was just a fact I had to deal with. I will talk more about money and sick entitlements (or your lack of them if you a hard working citizen!) in a later blog post...can you sense I have a lot to say about it!!! ha ha...
At my next appointment with Prof Marsh she told me that she had managed to get PCT approval for me to have the transplant down in London. Basically my PCT (Primary Care Trust) had to say they would allocate funds to me being treated in London as opposed to my local transplant hospital which is Leicester, and likewise the London PCT for Kings College Hospital also had to agree that they would help pay for it too even though I don't live in London...Postcode lottery and all that! So that was decided I was coming to London. This threw up stresses in my mind about people being able to visit, mum having to spend loads of money on accommodation etc... but in the end I had to not think of everybody else and accept this was the best place for me to be.
I was also then told that they had found 3 preliminary matches...3...on the one hand I was shocked there were not more to be honest, but on the other very lucky to have 3! All I knew was that one was from America and the other two from Europe (one being Germany). After the final testing which involves matching 10 important proteins I was told they had chosen one that had turned out to be the best unrelated donor you could get, a 10/10 match. There are around 370,000 people on the Anthony Nolan Bone Marrow Donor Register.
The next phase was tests, tests and oh yes more tests! This meant generally driving up and down the motorway to London a lot, which in itself was testing! I had to have Lung Function tests, ECGs, Heart Ultrasounds, Chest X-rays, kidney and liver tests involving radioactive stuff being injected into me and a series of blood tests. I then had the pre-transplant clinic...I sat in a room with Helen one of the Pre-Transplant specialist nurses and two doctors, one of which was the transplant coordinator doctor. This meeting was to go through everything with me, and I mean everything.
I had of course been through the procedure a few times with Prof Marsh but this was everything that could possible happen or go wrong.
It is a bit of a blur now but the bits I remember are being told are: The side effects of the Chemo (or conditioning as they call it) such as Nausea, vomiting, Diarrhea, mucositis (where your mouth cells are affected and mouth gets sore, might need feeding tube etc...), taste changes, hair loss, fatigue, heart problems, drug reactions, infertility, early menopause, thyroid dysfunction, Osteoporosis, lung fibrosis.
There is a 10% chance of graft failure, that the cells wouldn't take, 30% chance that I would get some form of what is known as Graft vs Host disease, where my cells and the new cells fight, 10% chance that this would be severe - and by that they mean have long term lasting effects such as needing oxygen for the rest of your life or something like that. The GVHD attacks your skin, lungs, liver and/or gut. A 60% chance all will be well in 2 yrs time, 10-20% chance of relapse and 15-20% chance of transplant related death.
Then they ask you to sign the consent form...ha ha....like I had a choice. The consent included agreeing for them to use life saving methods such as putting me on a life support machine if necessary. It was ok really I know it is a risky business but I am also one of those people who likes to know everything, I know I need this and they, of course, have to tell me everything.
It was then a case of trying desperately to not see many people as my admittance date neared so as to not catch any bugs!
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