Transplant talk

Yesterday I had a big transplant talk with my CF specialist nurse, my parents were going to come to this to help support me but unfortunately my mum couldn't get anyone to cover her work so I said I'd be fine to have it alone and they will book their own appointment with her and have the talk another time.

It started at 3 and we went through all the various topics such as death before transplant as unfortunately not all people on the transplant list get their call in time and sadly die waiting, she said that they will not offer me intensive care ventilation if I got to that point as they don't think it's the nicest way to die, I need to talk with my family about my wishes - if not talk write it down so they have some help when I have gone, they usually offer a transplant to a patient when they have about 18 months to 2 years left to live and that the waiting time for transplant is minimum 18 months (which doesn't sound too good when you only have 18 months to 2 years left to live.) Transplant is not a cure, you are swapping one set of problems for another set, side effects of drugs, then she said now for the good stuff - transplants when they work are great, you can go on holiday (ideally to places with good medical care and transplant care) which is a shame as I have always liked the idea of going to Thailand and seeing the beautiful beaches they have to offer but I would much rather be able to be alive and breathe so Thailand can take a back seat, we spoke about the procedure, the lines I'd wake up with - a neckline, 6 chest drains, a line in my wrist, a cafater - and she said whilst in recovery you do not have any dignity but they've seen it all before - the talk was really tough and I've only written some of the things that were said as to be honest there was lots to take in and slowly bits of what she did say are coming back to me as when she said about the whole dying before transplant thing my mind kept thinking about that which I guess is why it's best to do these things with family or partners as people can talk about things you may have missed.
This talk has really made the situation I am in hit home and transplant is tough it is not an easy decision and it is not as black and white as people on the outside may think, I am going to take my time to think about what I'd like to happen if I do pass away before transplant which is a very upsetting thought and is something no one should have to do but it needs to be done and I'd like to make it easier for my family if that does happen - I never thought I'd have to plan my own funeral.