Wednesday, December 31, 2014

My blogging muse Emily has passed away :-(

Late 2007 I started reading my first blog. It was called This is my life and I choose to love it. It was the first time I felt really connected to someone who has experienced what I was going through at the time even though she was in the UK. Her positive vibe was contagious and she cheered up many a bad day for me.
29 years old, small blonde and smiley. I love life, but was facing a death sentence due to end stage cystic fibrosis. Thanks to the generosity of a stranger I received a life-saving double lung transplant in January 2007, and am now a very proud mummy. I am very much a people person and a rather girly girl, loving all things pink! I enjoy talking, laughing, utilising my love of talking in the form of public speaking and awareness raising, and inventing new words and then being unable to separate them from real ones in my head.
As you can see she received her lungs exactly a year before I got mine. She also had a little girl 19 months ago via a surrogate mother.... and at the same time received treatment for chronic rejection. She was stable however and all seemed well until she contracted pneumonia in October that lead to respiratory failure and the need for a 2nd transplant. Apparently she did receive lungs again very recently but the transplant was not a success.

Even though I never met her in person, the internet seems a bit emptier and my heart breaks for her husband and baby girl :-( Read this blog post by a fellow CF and twice double lung transplant recipient Kirstie who was very close personal friends with her. Another beautiful blog who definitely does Emily justice is this one by Holly,

I don't think our psychiatrists and psychologists realise the full effect of having fellow transplant/CF friends, with whom you share a special bond and outlook on life, and what happens to us when they pass away. Most likely from the same thing that you will... (rejection or some sort of cancer probably if you are post transplant). It's a mix of sadness and fear and loss and "fuck CF". But you cannot decide NOT to be friends with these amazing human beings because your life would be emptier and definitely lack some purpose. The benefits far outweigh the down-side so it's just a part of transplant life.

Some people have suggested you rather keep your distance and spare yourself heart-ache along the line, but that's pretty much impossible and would also mean other people should rather keep their distance from me for the same reason.
RIP Emily


Anonymous said...

Alice, that was a lovely, lovely post. I am guilty of losing touch with fellow CF patients because the sadness can become overwhelming. You're right though. The benefits of knowing them outweighs that. Thank you for the clarity.

Alice said...


Alice said...
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Jac said...

Agree that it's impossible not to become friends with fellow cf/transplant people. It's hard but worth the pain x