It wasn’t that I couldn’t think of anything sensible to add last night (honest), it’s just there was no news as such so decided to wait until this mornings X-ray etc before updating.

Last night I found out a friend, Mary, who was waiting for transplant like me wasn’t doing so well. We have been emailing back and forth a lot, sharing the highs and lows, the fears and hopes, and generally supporting each other along this rather rocky road that is the wait for a transplant. As always the fantastic CF community rallied round and messages of support began flooding in, so I was relaying them to her boyfriend Alan via text then via email. Feeling entirely helpless and knowing she likes to read my blogs, I sent some similarly waffley emails, as I had that awful itchy feeling of must do something, anything to help, and these were read to her and she would squeeze Alan’s hand to show she could hear and apparently even managed a smile.

Mary and I had this thing in our emails, where we decided we were going along this rocky road hand in hand, as our stats were pretty similar, and so whichever one was struggling at the time, the other would gently remind them that they were holding their hand, pulling them along. Sounds strange, but it was comforting. This morning, aged 23, having fought and fought till the end, Mary ran out of time. There are no words when this happens, because there is no rhyme, reason or fairness. All my thoughts are with Alan and with Mary’s family, it is just very very sad.

This has put my news into context; I would have probably been stomping on here today as after going down for my 55930th X-ray (actual number may vary from melodramatic guestimate given) I have just been informed by the team that I am definitely not looking at home before next week; lung is still decidedly deflatey and not even attempting to sit up and take notice at present, and until it starts moving in the right direction, it is not safe for me to stray too far from the hospital. Having reflected on this a little, and taking into consideration today’s events, I consider myself in quite a fortunate position. My lungs are obviously incredibly precariously balanced right now, however I am feeling well, I am not in any immediate danger, but due to unstable and generally naughty lung behaviour I remain urgently listed for transplant.


I am planning a shopping spree (will carefully ignore all envelopes that look like bank statements when my post is brought up) and a picnic with my family in the nearby park, perhaps a Sunday lunch out too, so a good weekend lined up. I still have that chance ahead of me, and as Alan reminded me what I need to do now is concentrate on fighting hard myself. And I will.

Lots of love Mary the fairy xxx