Should be out by tomorrow

As some of you know, and some of you don't, I was admitted to hospital on Monday with a raised temperature. I can't say I felt that bad, very tired but not poorly as such. But we've been told quite firmly: do not sit on a temperature as you do not know what is causing it, and the drugs you are on mask a lot of stuff so it is possible to feel fine, but not be fine at all.

So Jo kicked my ass into the car against my will (I was not wanting to follow the advice mentioned above) and off we went. I have been suffering with strange spot/lesions for about 10 days on my head and another area which I don't wish to discuss too much on such an open forum, which have made walking and sitting very difficult. This was considered to be GvHD, but on arrival at the hospital I was given a blanket antibiotic to cover any possible infection and in 24 hours the pain had significantly reduced, and a virus has been found on the line in my arm which has also been identified on my head and other end. So it is simply viral and being treated and I am no longer in any real discomfort. My line has been taken out of my arm which is lovely, no more tubes hanging out of my body, which are such a pain in the arse. My temperature has stayed low, and I have been told I will probably go home once the course of antibiotics is over, which is tomorrow. I feel fine, am allowed of the ward, still having to eat pureed meals as my mouth is sore, but it is amazing how quickly you get used to something and almost forget what it was like to eat normally! It is just hard trying to find things that keep my diet a bit interesting, at the moment there are a lot of milk based foodstuffs passing my lips which is getting a bit tiresome. It is all about getting calories in as even though I feel I am eating constantly I haven't put on any weight at all.

My face and scalp is still red and itchy, but not around the eyes which makes me look like I've stayed on a sunbed a bit too long with goggles on. This IS considered to be a GvHD related skin condition, along with the rash on my torso and the skin on my feet which is now peeling off in sheets (quite satisfying to pull off as it comes off in strips, bit like peeling wallpaper). I also have skin discolouration (like freckles) on my legs, which is also 'classic' GvHD apparently. None of these things are that bad so I am very happy at moment. The transplant nurse visited me today and said that to have had the hard time I've had with all the viruses (apparently no one expected me to have such a difficult transplant when it was a reduced intensity allo) and to look so healthy and be so active I have done remarkably well, which was nice to hear as I have nothing to compare my progress to, whereas she has years of seeing these things. As I mentioned before all major internal organs are operating fine and a few skin problems I can put up with right now.

GvHD!

I have been meaning to write this for weeks so the usual apologies for not keeping you all updated.

I have finally been hit with a confirmed case of Graft-versus-Host-Disease, my consultant has been very reluctant to say GvHD up until now - all the skin rashes and issues I’ve had have been attributed to drug reactions. This is good news, GvHD is something we have been waiting for, it shows that my donor immune system is recognising me as foreign, and this increases the chances of the immune system recognising and attacking any disease that might show itself.

It does come with some discomfort though, at the moment it is mainly a very nasty rash covering my torso and arms, mouth sores and dry purple soles of my feet. The mouth sores have made it quite hard to eat, which has resulted in me loosing a bit more weight frustratingly, I am now a meagre 11 stone, a weight I have not been since I was about 18. Last weekend my face went bright red and swelled up, I was put on steroids and some strong creams and this has sorted the swelling, but since then my face has peeled constantly, and is still quite red. This, combined with the weight loss, makes me look like I’ve just returned from some polar expedition, looking windswept and in need of nourishment! Not a bad look really, could be worse. The only real issue is the face cream, which my eldest informed me makes me smell like ‘ear wax’. All these symptoms are controllable though (the rash on my torso is looking better everyday) and at least at this point there is nothing significant going on with major organs. Liver, kidneys and lungs all operating fine. I am no longer on any nasty anti-biotics for CMV as the test results have come back negative for the virus, and the toxoplasmosis is also currently in check. My treatment for the pneumonia I contracted continues, but this is only once a month so is not particularly intrusive.

One of the best things that we’ve been told is that my symptoms suggest an aggressive donor and this can only be a good thing as it means it is likely to be aggressive towards any left over Myeloma. I have also had it confirmed that a bone marrow biopsy taken last week shows no disease and 100% donor marrow. I am currently, officially, a chimera. A blood test taken in September showed my blood was a 100% donor too, but a bone marrow biopsy provides a much better picture of what is going on. This is incredible news, my faulty bone marrow is gone, hopefully never to return. My new efficient, aggressive German marrow has taken over!