Hi Philn
Great video and I appreciate the time you must have spent putting it together. It has helped me summarise and confirm my own research that I have been doing.
Next week is a big week for me as I am going to see my gastro consultant to tell him that I am starting AMAT I know this sounds a bit cocky, arrogant and bullish but I am going to do it in a charming and knowledgeable way. This is in essence a sales pitch and I am hoping to get some back up from Dr Sanderson at guys and st Thomas in London. Whether that be an email I can forward on to my consultant or get Sanderson and my consultant in touch with each other.
If my consultant doesn't want to give me AMAT then I will get myself referred to Sanderson myself.
I would prefer to have my treatment all done at the same hospital - the royal London hospital where they currently look after my kidney transplant as well.
My gastro doctors tell me they are under treating me due to all the drugs I take for my transplant. Some of them are used in Crohn's which makes changing drugs or doses a bit iffy at times when it comes to managing my kidney treatment. Therefore they want to put me on an anti tnf treatment to which I have told them no because I don't want to stop taking my anti rejection drug cyclosporine after 20 years just to try something with a 40% success rate that when working can stop after a while plus there's the side affects too! I'd much rather take my chances with AMAT treatment.
BTW has anyone else got Crohn's and a kidney transplant or similar?
The guy from Birmingham sorry I can't remember your name how did you get on?
If anyone is worried about the traveling aspect of getting treatment don't be it might be worth it. I travel at least every 3 months from Essex to the royal London hospital and although NHS funding is stretched I would say it is one of the best if not the best hospitals in the world for kidney problems although I can't say I have the same confidence in the gastro team.
Any advice guys on how I should lay out my pitch? I only will have a few minutes to get my point across as my consultant must be very busy as he is always trying to hurry up my consultations.
I will of course keep you all posted on how I get on
