UPDATE
I finally got to see the transplant dr at ST. James, Leeds UK (where the actual operation will take place) on Thursday. I was expecting this to be his opportunity to tell me why they decided to cancel the straight donation with my dad and try and get a match in the paired/pooled donation scheme.
I was ready prepared with my concerns over waiting for a match that was highly unlikely to happen. I didn't have to voice my concerns though as the dr has decided that my dad can directly donate to me after all
The dr explained that the antibodies I have against my dad shouldn't be too much of a problem. They were very surprised when my blood was mixed with my dad's and there was a severe reaction. But, apparently, they hadn't realised I had had Rituximab. The team now believes that the reaction was caused by Rituximab and not my antibodies that I have. Therefore the transplant can go ahead. I would have been given a date there and then for the operation for the end of July, but they just want haematology to do a final check on my bleeding problem, but the transplant would be completed before the end of summer.
The news just kept getting better and better.... they aimed to have my dad in and out of hospital within 24hrs and me within 5 days! One of the best pieces of news was that I wouldn't need to be on long term steroids after the operation, which I was expecting.
Less than 24 hours later EVERYTHING changed.
I had an appointment the next morning at another hospital that deals with my vasculitis. This hospital has the best experts for most things, but especially vasculitis and drugs such as Rituximab. The Dr at this hospital said that as the tissue match test was performed more than 3 months (almost 12) after my last RTX infusion, there is no way that RTX could be "killing" my dad's cells. I.e. the reason the other hospital gave for allowing the transplant to go ahead, is invalid.
My only hope now is that the hospital in Leeds tried to simplify things, or did a bad job of describing the issue with Rituximab "killing" my dad's cells. But it really doesn't look like the transplant will be going ahead. I'm just going to have to wait AGAIN to find out if it's happening again.
As if things couldn't get any worse, the Dr isn't sure if I may be at the start of another relapse. I have to have been in remission for at least 2 years before I can have a transplant, so realistically, if I'm relapsing, it will be at least 3 years before I could look at getting a transplant. Not only that, but another relapse will completely finish my kidney function. I've been refusing dialysis for over a year now, but any further drop in function and I'll have to give in.
The dr explained that most patients that have a few doses of RTX don't start producing B cells again for over 2 years. Apparently my blood tests from last December (less than 12 months from last RTX infusion) already showed B cells.
My ANCA is negative, but my nose is bad at the moment.
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