Back in hospital on one the Haematology wards. In clinic yesterday the sigmoidoscopy result showed grade 3 GvHD - there are 4 grades apparently. In English these read something like mild, moderate, severe and very severe. My weight had dropped another kilo (4.5kg since this problem started 5 weeks ago). Clearly the oral treatment wasn't working so I was admitted there and then for high dose IVI steroids.
It's a little too soon to know whether this will work. Nevertheless I feel a great sense of relief that we know what the problem is, that it is not something new but rather it is one of the complications of the treatment and lastly that something can be done about it. If the steroid infusion doesn't work there are other treatments, though at the moment I have no idea what they are and rather hope it stays that way. Things can't be good when you feel relieved/glad to be admitted.
Karine has a cold so for the first time ever wasn't able to come into clinic with me, it wouldn't have been fair on other transplant patients in clinic. I haven't seen her since she dropped me at the door at 9 o'clock on Thursday morning, frustrating for both of us. Nevertheless she has been dashing about getting together the things I need in hospital as well as running everything else as usual. The length of stay will depend on how quickly my insides respond to treatment.
The last week or so has been a frustrating worry for both us with worsening symptoms and not knowing what was going on. Some days (more and more in fact) my exercise tolerance had dropped off to pretty well zero, I felt grotty and needed to sleep more. Life was not fun and was starting to feel more like merely existing rather than actually living. The dietician suggested trying a dairy free diet for four days which if it had worked would have been great. Unfortunately things got worse and worse during this time. In desperation Karine kept trying different ideas that the booklets suggested but to no avail, very frustrating.
I was very impressed with how quickly the haematology service got on with the new treatment. Within an hour of seeing the consultant they had found me a room on the Day Case Unit and had given the first steroid infusion, it only takes thirty minutes. The service seems to be both extremely efficient and very responsive to the needs of patients. This was an unplanned admission, the clinic and DCU were both busy but managed to cope with the extra work with seemingly no problem. Both of the haematology wards were full so I spent about twelve hours on the Special Receiving Ward which takes haematology and oncology admissions (mainly emergencies I think) and acts as a buffer in the system for these two services. It seems to work extremely well. Hats off to the NHS once again.
* Beatles - "The White Album" track 1
** Jethro Tull - "Benefit" track 8
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