I just spent two hours reading/skimming through Eva Markvoort’s blog starting from October of 2009.  She died this past Saturday, March 27th waiting for a double lung re-transplant.  She was 25 years old.  She would have turned 26 this coming Wednesday.  Eva had Cystic Fibrosis and had a double lung transplant in 2007.  She was doing great until 2009 when she went into chronic rejection.  She was placed on a waiting list for re-transplant in October of 2009.

Reading through her blog brought back a flood of memories.  In the end stages before re-transplant I experienced everything she wrote about.  I think unless you’ve been there it’s hard to fully grasp what it’s like.  It’s easy to understand the feeling of not being able to ‘catch your breath’ or gasping in air after overdoing it when running or surfacing from underwater. But, it’s a whole other ball game when it’s a struggle to speak more than one or two syllables at a time, or barely be able to move from bed to commode without struggling and feeling like you’re gonna die… when all you want to do is be able to walk outside and sit in the sun, or just get up and drive somewhere just for the freedom of it.  I didn’t even ‘know’ her until today, but I’m so incredibly sad.

After reading through her blog I can’t seem to understand why she wasn’t a higher priority for re-transplant.  How is it that my lung allocation score was 92.9 out of 100 and got re-transplanted in 4 days after listing and she died waiting?  I can’t wrap my head around it.

The beautiful thing is that she left her legacy as a CF advocate and organ donor.  She was in a documentary that won 3 awards at the Vancouver International Film Festival, and she won the 2010 Summerhayes award for her work on behalf of the Canadian Cystic Fibrosis Foundation. Most importantly she truly celebrated life and radiated hope and love, as evidenced on her blog.

 

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