Happy New Year!
I hope everyone had a fantastic and sparkly Christmas - mine was wonderful and consisted predominantly of family, food and a great deal of fun.
I caught another cold (4th this winter) in the run up to Christmas and it really hit me hard – one of the reasons I went so quiet. Dutifully, I headed up to Harefield to be checked out and was horrified when they mentioned the words “acute infection” and “IVs” to me. Looking back it was a pathetically over the top internal reaction – as a CFer I used to have IVs all the time and there are hundreds of pwcf out there who still have IVs all the time and don’t bat an eyelid...but it’s true what I was told pre-transplant; you get used to being “normal” ever so quickly.
Anyway. They gave me some orals and I am to go back on Monday. But the great news is the Temperatures have stopped as have the other horrid symptoms and I am fairly confident that I will be sent away IV-free. Lung function remained pretty much stable which is obviously the most reassuring sign.
Feeling so ill this side of transplant hit me in a variety of ways. Firstly, I panicked as I am not used to being ill now I am well (comprehend that sentence if you can). Secondly and more horribly, I was able to remember properly for the first time since transplant how it used to be. Now I’m so well, it’s very hard to take my mind back to life pre-tx as my entire body feels different and memory relies on sensations and feelings as well. But I was transported back to lying in bed all the time and it shook me quite a bit mentally (am still randomly welling up/crying at the smallest thing, most amusing example being when I was telling my mum about crying that morning I cried remembering how I cried. Hmm.)
Now I’m feeling much better the strangest feeling left is one of guilt; I feel like compared to my old CF-state (and to many of my CF friends) I had no right to get in a state or to moan as much as I did…I’ve put up with worse and others are still putting up with worse. But then I was scared; I was told it was an acute infection and that can cause rejection….but then once the antibiotics kicked in within two days I was feeling so much better. It made me feel fraudulent as before it would take me weeks if not months to recover. Does that mean it was less valid? I’m unsure, but just very glad these orals seem to have worked.
Nearly two years on (in 2 days!) and I am still getting used to my new lungs. I suppose I worked with my old ones for 22 years so I shouldn’t really be surprised that there are still unknowns hidden around corners.
Other than a bit of crappy health luck, Christmas and New Year were fabulous. I always get a bit emotional at New Year and was reassured that several other Transplant patients reassured me that they do too. I think it’s just such a marker that anyone who has been through anything vaguely life-altering will find a whole sea of emotions well up in them at that time.
New Years Resolutions for 2009? The same ones I always make (and never keep) such as being more organized, tidier, etc, but also not to take things for granted. I always worry slightly that I am in danger of doing that the further away my old life becomes, and I never ever want to forget how lucky I am.
Organ donation week
2 weeks ago