Getting back, somewhat belatedly, to tales of my time immediately post transplant I think we had reached the point where I was recovering well from photopheresis treatments and concluding steroid treatment. I would remain on some form of immunosuppression for another few years yet but it seemed at that point that the aforementioned treatments had been successful in beating my chronic Graft vs Host Disease (GvHD) into submission.
That isn't to say that I emerged totally unscathed from the whole affair. The fact that my rejection problems manifested in my skin and in all the areas with mucous membranes has had long lasting effects that I've quite simply just had to come to terms with. During all the treatments my skin became very thin and porous and in some places it actually tightened. Now this didn't cause much of an issue except in one area where it really did cause a very surprising effect. I developed what they call mephosis. What it actually is is the contraction of the skin that makes up the foreskin which isn't really good for the penis.
So I had to go and see a urologist about what to do about it. As experiences go I can classify it only under the heading of surreal. As I took down my particulars for him to examine me he quite simply said 'Well that'll have to come off' to which I, somewhat shocked replied 'What, all of it?'. After he stopped laughing at my response he explained that all I needed was a circumcision to alleviate the problem. What's amazing about that to me was finding out just how many other people I know who had had the same procedure done. The other funny thing about the whole procedure was having to go through a barrage of tests to see if actually had any STD's before the surgery could take place. I had to go to the normal clinic where people have to queue up OUTSIDE on one of the busiest streets in Glasgow on what they laughingly call a first come, first served basis. There's a lot of people there with faces that just scream regret. That is the bits of their faces that you can see - there is an impressive amount of shoegazing that goes on in these places.
Now all the mucous membranes were affected so my digestive system no longer works as well as it used to, including my mouth flaring up in blood blisters when I eat some foods. Annoyingly this includes some of my favourite foods but I've got used to it now.
The other lasting effect that came about from this time is the one that people see most of because it involves my eyes. I no longer make tears in my left eye because the glands that produce tears have been damaged. This means that I will always have to use artificial tear drops in my left eye to lubricate them. It's not that much of a problem for me but lots of people do seem quite freaked out when I casually put drops in my eyes.
What we didn't know then that we can see retrospectively is that the GvHD in my lungs hadn't completely gone away and was, in actual fact slowly damaging my lungs over the best part of the next decade. It was such a gradual process that it was barely noticeable between each visit to the respiratory docs but it's plain to see looking back the way.
At the end of the photopheresis I had my second Hickman line removed. Sadly this didn't go as easily as the first because this little piece of rubber had decided to graft on to the blood vessels it was attached to. I couldn't get my own internal (or external) organs to recognise that they were part of my own body yet here was a little piece of rubber that my immune system happily accepted as its own. The doc removing it had to do so very slowly making circular cuts around the tube to get it out and this meant that the scar left behind is quite an ugly one right above my left nipple. It essentially looks like I've been stabbed on that side and have a bullet wound in the other where the first one was. Still chicks dig scars so it's all good really.
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