Days 2 and 3 were all about information and talking. I got a talk from one of the nurses who look after continuing care for people post transplant, and she described all the drugs and the regime. It involves lots of pills - 3 basic anti-rejection (immunosupressant) medications and then a load of other stuff to counter the side effects of the immunosupressants, about 10 drugs in all. The side effects are everything from a higher chance of skin cancer and lymphoma to nausea. Hooray!
I can imagine for someone not used to dealing with a drug regime this could all sound pretty horrendous, but I counted up my current drugs from my repeat prescription:17. So I’ll lose a load of the CF drugs to do with the chest, keeping the ones to do with digestion, and take on a load more. I have systems….
The side effects are obviously pretty scary, but people can and do live pretty normal lives after transplant, so it must be manageable. The other thing you have to do daily is weigh yourself and do lung function tests, as both of these are indicators of rejection starting. The drug regime is all about damping down the immune system so the lungs don’t reject, but leaving enough immune system to fight infection and viruses - so colds don’t kill you. It is a delicate balancing act and sometimes the rejection starts and they have to bang up the immunosuppressants for a while to get it under control, generally steroids, and then tail them off again once things are ok. The nurse also mentioned OB - Obstructive Bronchiolitis, which is the gradual scarring and decline of the transplanted lungs due to the chronic rejection of your body’s immune system constantly attacking the lungs at a low level, and one of the achilles heels of lung transplantation. Everyone points out that this procedure is all about quality of life, not necessarily longeivity (sp?). If left without transplant I might, with a lot of luck, just about make it for another 5 years, but those would be pretty miserable years with an increased reliance on oxygen, more hospital stays and reduced mobility. If I do the transplant, the median survival is 5-6 years, but during those years I could ride bike, climb hills, etc etc. Of course I’m hoping for more than 5 years, but better not to wish too much to early - I am being cautiously optimistic about getting through the operation, and that’s enough for now.
After seeing the nurse I met Jas Palmer, the consultant chest pysician on the transplant team, who I remember being one of the doctors with the CF team about 10 years ago. He reiterated much of what we’d discussed in our previous meeting 4 weeks before, checked there were no counter-indications in my test results and basically said that it is about the right time to go on the list. “If you were transplanted tomorrow I wouldn’t say that was a bad thing”, as he put it. He suggested I go home to Cambridge for the night and come back for the final round of chats the following day, so after convincing the nurses over in the chest medical unit, where my bed was, that I could discharge myself and go home, I did just that.
5 weeks ago