The months immediately following my bone marrow transplant were filled with twice weekly trips to the clinic at the hospital to be assessed and to have bloods taken. As a result of those I spent a large amount of my time utterly preoccupied with the numbers reported back from my blood tests, desperate to see if I was making the correct sort of progress or looking for the tell tale signs of rejection.
It's a confusing time as having gone from being completely bald, taking the immunosuppressant cyclosporin to avoid rejection means that you become quite hairy. By which I mean that your eyebrows actually start to extend towards your sideburns and your beard takes up a lot more of your face than you ever remember having to shave before. It's all a bit teenwolf really and not a particularly good look. I felt a bit down about having to look at another different person's face in the mirror until one day at the clinic I met a teenage girl who was going through the same treatments as me. It must have been so much worse for her.
So I was constantly on edge about what my condition was and it wasn't until day 100 post transplant that I began to relax a little. Up to that point they rely on various markers from blood tests to ascertain whether you're rejecting the new bone marrow, but after day 100 they do another bone marrow aspirate and see for themselves whether it is the old bone marrow (with the Philadelphia chromosome) or the new stuff. For this one I was thankfully well sedated and within a day or so they had told me that the old bone marrow was undetectable which was a massive relief.
Then all I had to worry about was the fact that my brother was getting married a month later and I just had to avoid infections so I could make sure I go to the wedding. I did better than that in fact and even went out on the stag do with him and his mates. The wedding itself was great although I have to admit having a wee greet to myself at one point because I was just so glad I was there. I had the obligatory dance with my wee granny as well which just made it perfect.
In the months following I felt almost back to my normal self so I went down to Cardiff for a long weekend to visit my friends and to show them that I was doing ok. I had such a good time and it was amazing getting away for a bit - I even got involved in a game of football with the guys down there which amazed everyone, including me.
It was on the train on the way back up from Cardiff though that I noticed that my skin was reddening. At first I thought it was just a little sunburn but it stayed that way for over a week so I mentioned it to the docs. They saw it instantly for what it was, the first sign of a completely different sort of rejection.
No longer worried that I was going to reject the bone marrow focus now shifted to the reality that the bone marrow (being the basis for your immune system) was starting to reject me. It's a condition known as graft versus host disease (GvHD) and is what is responsible for my current plight. Now a little GvHD is actually seen as a good thing as it means that the bone marrow graft has definitively taken hold as your own but in extreme cases it can kill you. We had to ascertain which of these it was and how to treat it so a barrage of tests was conducted, including skin biopsies.
It turned out that not only was my skin under attack from my new immune system but my liver, kidneys and lungs were getting it too. The fact that even my own body was attacking me wasn't lost on my friends who, despite the seriousness of it, took great delight in knowing that even my own organs can't bear my company.
The treatment started with a random choice for a variety of treatments on offer. As it happened though I took a bad reaction to the drug tacrolimus so I was put on to a different protocol almost immediately. This involved steroids along with another immunsuppressant called mycophenolate mofetil. The varying doses of these drugs meant that I was always given them in small capsules and at one point I had to take a grand total of 63 tablets per day.
The problem with steroids is that although they do calm the immune system down, they also have awful side effects and it wasn't long before diabetes kicked in for me, which led to more medication, a side effect of which was to give me uncontrollable tremors in my hands. I was exhausted and started to put on weight at an alarming rate. I put on two stone in about 6 weeks so again I was looking at some other person's face in the mirror, and this time he wasn't particularly good to look at. It was a horribly distressing time and I ached for some respite, which came from a source in the hospital.
I was given the chance to take part in a study into a new therapy called photopheresis which could help the effects of my particular autoimmune condition. The theory is that they take a type of cell called the T-cells out of your blood and damage them with UV light and a UV sensitive drug that binds to the T-cells. These cells are responsible for immune response so if they were to be damaged in this way and then given back to you then it would 'teach' the immune system not to attack the organs it has been attacking.
It involved long sessions hooked up to the machines which separated the cells but I didn't mind that at all. I had my Hickman line removed after an infection previously so I had to have another one implanted but that was fine - it wasn't so much of an inconvenience anyway.
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