I have been asked to dialyse as close to my first plasmapherisis. So I am dialysing tomorrow (Sunday) in preparation for Mondays plasma and Rituximab infusion in the afternoon.
Dialysis lasts 4 hours in which I have two big needles placed in my fistula and the blood cycles through the machine for the time removing both impurities and liquid. The main reason for the extra plasma is to get my creatnine down.
I find dialysis ok - although I am now quite selective of who puts me on. Eg who needles me. This is probably a mental thing but it is my body, my arm and my life. One of the nurses at the beginning of my dialysis treatment said "Ian you have the right to choose and make sure you use that right." Unfortunately that nurse has left - she was an awesome nurse so caring and brilliant at her job. I implore other patients to be selective if they like.
I will try and go for a walk or run tomorrow morning. I find it important to do exercise and get fresh air at the moment it makes one feel so much better.
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Hi Ian, Shahid here. Is really ironic and coincidence all of this. I went to a British Transplantation Society conference today (will be again tomorrow) and plasmapharesis and desensitization is the up an coming technique. Obviously you are one of the first in Bristol (because of some incompatibility with your Dad).
Anyway, speakers all had various opinions, but on the whole they all seem to be in favour (more or less). One speaker, was talking about whether Rutiximab was actually beneficial.
I will drop of some literature to you because you will find it really useful. I want you to know I have all the inside information and will do my utmost to update you on protocols etc, because this is 'hot' at the moment. More so around ABO incompatibility than HLA incompatibility because HLA is more extensive in terms of work-up.
I also spoke with some members of S'mead Labs (those who have known us sinc kids), so it was all quite interesting.
See you soon,
Shahid
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