Sunday, November 08, 2009

The past week has flown by (as has the weekend, apparently). It's lovely being back at school; the fact I love seeing the kids so much when I get back reminds me I am in the right job.

Health-wise, I'm still not quite happy about naughty lung behaviour, however am beginning to wonder if I'm just paranoid. Lung func is ok, X-ray was's just a feeling (as well as the gurgly cough which is still there). It feels wrong to complain about it as it's really nothing compared to what poorly folk waiting for transplant go through on a daily basis. I think it's just that post transplant, I am more anxious about the smallest twinge or change. I'm sure it's fine (clearly talking to self here rather than anyone else...)

Things are moving steadily along LLTGL wise now the manic-ness (it's a word) of Save Jess-tival is over. Jess had to have her end of life talk last week. It's something that the team have to do when you get to the end stages of CF as whilst there is definitely still hope of a transplant, it is only fair to talk through the other possibility. I remember mine so well; mine was actually done after my massive pneumo that nearly killed me. It was essentially a talk to enable me to plan what I wanted to happen if we reached the end. It was a hideous thing to have to go through but I take my hat off to the team member who sat and patiently talked to me and listened to me for what felt like hours, as I asked them endless questions and went over the same concerns again and again. They were so patient and so helpful, and I actually felt a lot better after that; I felt that even if the end came, I would be able to retain a small amount of control. My heart aches for Jess having to go through these discussions and plans. It's so very difficult to face and it makes everything seem a lot more real.

Please keep helping LLTGL spread the word; we're always looking for volunteers and fundraisers so get in touch if you could help! A bit deep on a Sunday I know, but for some reason I've been thinking a lot about back then recently and needed to get it off my chest. (I've always loved how wonderfully suitable that phrase is for CFers).

Keep on shouting about it folks; knowing people are behind you every step of the way is hugely helpful when you're fighting for every breath, and Jess, we really all are.


Unknown said...

Hi Emily, I went on our local radio on Thursday to talk about organ donation and how Naoishe was due to meet the transplant team. Managed to get quite a few to sign on register, so was vv pleased. Karen, Naoishe's mum

Molly said...

Hi Emily :)

I'm not particularly well health-wise at the moment with having ME, but would love to be more involved in LLTGL if I could as I think it's such an amazing charity and I'd really like to help out. So let me know if there's anything I can do.

I hope your naughty lung soon behaves itself again, I can understand that it must be a worry. Hugs.

Take care,
Moll x x

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