Over the past few weeks many people have commented on how can I stay positive - it must be hard. Do you not get depressed?
My response is this. I have had kidney problems my whole life and thus firstly know no difference. Since I was a little child it has been bred into my to be positive and to get on with it. I have seen people in much worse scenarios than me and I see them each time I go to hospital - this makes me feel stronger. I have always had good family support and the mind that has enabled me to switch off negative feelings - negative feelings I believe spiral down and down. In my opinion they are bad for health.
When I was a child I was in hospital for a long time and spent many hours alone on a bed with numerous machines attached to me. I was close to dying - a number of kids died around me. I came through that with a very clear memory (probably a self defence memory) what is the worst that can to yourself? You die. I am not sure that this is correct now - worst things can happen and perhaps death is the ultimate escape?
Before people start wondering I am not thinking that I am going to die soon. I am just trying to explain my feelings to people who ask the question? Do you not get depressed and down?
Ps if anyone who works with or on Rituximab is reading this I would be very interested in talking with you. Please leave a comment and I will get back to you. It regards my current treatment
3 comments:
Hi Ian
Its been sometime since I last posted a comment. Re Ritixumab; obviously you know this is from the Monoclonal antibody family. It has many applications, but in the main professionals have said its use in pre-transplant; pre-sensitized recepients needs to made more clear.
Jordan and Pescovitz (2006) state:
Much attention has been placed recently on transplantation in highly HLA-sensitized patients. In attempts to remove these antibodies and enable successful transplantation, several novel approaches have been developed. These include intravenous Ig (IVIg), mycophenolate mofetil, sirolimus, alemtuzumab, protein A immunoabsorption, and rituximab. IVIg has emerged as a very effective agent when used alone in high dose or when used in low dose and combined with plasmapheresis. Although alemtuzumab has been used to eliminated B cells, it fails to prevent antibody-mediated rejection and therefore probably is not suitable for desensitization. Rituximab, a B cell-specific antibody, seems to be safe and to have some efficacy as a sole agent in elimination of alloantibodies but most likely will require combination therapy with IVIg or other agents. Newer agents, such as humanized anti-CD20, are being developed. Despite the great interest in the problem of allosensitization, with one notable exception, there is a major deficiency in controlled clinical trials, the conduct of which should be a focus for the near future.
May I suggest to place the following keywords in PubMed; rituximab, plasmapheresis, transplantation. This provides at least 64 citations re your enquiry; not all relating to renal medicine.
My Best Wishes,
Shahid
Sorry Ian, It leaves 80 citations (20 on each page); 4 pages.
Shahid
Hope that helps a little!
Thanks.
Interesting but does not directly relate to my immunity response at pre-existing sensitization stage. (at least I don't think it does).
I think that the team that work on rituximab (roche) may be reading this blog and am in the process of making contact with the right person.
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