Sunday, December 10, 2017

RIP Siobhan

Last week Wednesday my good friend, fellow CF sufferer, fellow lung transplantee and LLGL co-founder Siobhan passed away after more than a month in hosp and a few months of worrying health. Her memorial was yesterday and I believe that she would have been satisfied.

I'm not really sure where to start on how much we will miss her or how sad I am because it doesn't feel real yet. It should probably feel more real seeing as my transplant was a day after she was admitted for a biopsy. so I was in hosp with her for most of everything. I got to see her once, briefly, when I walked past her room while walking with the physio. There were also 3 or 4 days where we both had a phone and were awake. I wish I could show her that I'm so much better with the new lungs, and celebrate with her. Her transplant was 2 years ago, and I missed a lot of her milestones due to my declining lungs... missed her 30th, missed her first lungaversary. In short, I couldn't keep up with her.

At Fawn's birthday in June, we had such a great time, because I went "out" for a change, and Siobhan and Andrew kept me company by the plug point/electricity for my oxygen. She introduced the topic of the "#death-crutch", or we stumbled upon it or something. It's the idea that because you're dying, you can get away with being brutally honest, or selfish, and people can't really argue with you because you're dying. We subsequently went through a whole bunch of examples of where it could be fun to be brutally honest and how hard it would be if I got new lungs and actually had to make an effort to be nice to people and stop being brutally honest again like normal people.

It was her memorial yesterday, and it was a really beautiful day in between lots of rain that we've been having. So the weather and venue was perfect. The poem she chose was really lovely (yes I think we all roughly plan our funerals/memorials when you get older with this shitty disease... I have a funeral playlist in my head and Siobhan def stole some of the ideas :-p

Ii other news... I was also on the radio last week... on a show called The Good Stuff on Cliffcentral. Listen to the interview here. My interview is after minute 28...

My Dr's visit on Thursday went well too. all lung functions up a bit, x-ray looks good, bloods not perfect yet but we're working on it, Prograf dose was adjusted slightly, iron levels still low... have started eating chicken livers now! As from today cortisone dose is back to normal!!!! Yayness! Good ol' 7.5mg. Let's hope the slightly added cheeks disappear now. And the random high sugars. Have a great week.

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