Transplant Assessment

Today I had the final part of my transplant assessment which was meeting with the Doctor. I was very nervous and felt sick all day because there were 3 possible outcomes, the first was a flat out no to transplant for one reason or another, the second was to wait a while, which could be because say my weight was still not good enough, or my blood sugars, the final outcome was I'd go back in the new year for a 2/3 day assessment, which is even more tests and an overnight stay, more important chats and information.

Thankfully, I got the third option. So I'll be going back to Harefield in the next few months, or it could be earlier if they have any cancellations.

The chat was a mixture of emotions, I was told I am ill enough to need a transplant and as there isn't any other treatments they can offer me, transplant is my only option. I was expecting them to tell me I was too well especially because I'm not yet on 24 hour oxygen, but the fact I have a very poor quality of life, I do use oxygen and my wheelchair and also the fact I have spent about 18 weeks of this year on IV's made them think I am bad enough to be listed. They actually seemed like it was quite urgent, when I left the doctor said 'We will get you in for your next assessment sooner rather than later and hopefully if you are well enough, get you on that list as soon as possible!'

The bad bit of news was that I am blood group O which is the most common so the waiting time is longer, but also for some weird reason there are less O blood group organ donors that are short, a very strange statistic but an important one. He said this could mean I'll have a longer waiting time for new lungs because finding a suitable match could be more difficult, but it might not and I could get lungs quickly, I guess I will just have to wait and see :)

The other bit of not so good news, is that I do have liver disease but I don't believe it is too bad as I only have yearly ultrasound scans so if my CF team aren't too concerned about it, hopefully Harefield won't either. But if they think my liver is bad, I might not be able to have a transplant.

They didn't seem too concerned about my weight, he said obviously it would be ideal if I was a little bigger and it's the perfect time to gain weight (lots of Xmas food!) and also my average blood sugar was the best it's been in a very long time, so they were quite happy with that.

So to sum it up, I hope my liver isn't too bad. I'm a little worried about my blood group but I'm happy that they aren't saying I'm too well and I should get on the list :)

Thanks for reading.
xxx