65_RedRoses is the story of Eva who has CF and received a life-saving, double-lung transplant a few years ago. The documentary tells the story of her waiting for and then receiving her transplant. Since the transplant (which was about 2 years ago) she has suffered from chronic rejection (the same condition Will has), except that hers has moved much more quickly and she is now again listed and waiting. We aren't in touch with too many CFers on line, a few. It's really not Will's thing (In his words: the last time I did that everyone I liked died in the space of a few months and it was awful.) and it's not my disease. But I lurk a little, and share what little I know of the specifics of Will's experience (medication issues, treatment experiences, etc.) when it's on topic, and I'm in touch with one or two spouses of people with CF. That's how I came to hear of the 65_RedRoses movie and Eva.
At any rate, if you are at all interested in CF or organ donation I hope you have the chance to watch Eva's story. (Also, it is meant to be a great documentary and winning awards and all that; so it's good if you just like good films too.) If you get CBC it will be on Monday night, November 16. We'll be watching. And, Eva, if you find this on the Interwebs, we're thinking of you and sending love.
In other CF-related news, I am very sad to post that Deron Arnold passed away and according to his faith was undoubtedly received into heaven on November 8. Deron also suffered from CF and after waiting for more than a year received his transplant in September. Unfortunately there were many complications and Deron never fully recovered. Deron was, I think, pretty much the first not-already-known-to-me commenter on the Liam blog. He was a doctor by training (pathologist) and had lots of questions about Will's CF and transplant experiences. They "talked" occasionally and I sometimes played intermediary, relaying questions and answers back and forth. I've been thinking of Deron's death a lot this past week and it makes me really, really sad, which is why I haven't written anything about it before now.
Deron and I didn't have a lot in common in terms of our world views, but I had great respect and affection for him. He was a very likable person, even if we disagreed about, well the things people disagree about, I guess, politics, religion. I hope it's not gratuitous to say that. At any rate, we both had a lot of questions about and were pretty invested in navigating the hazy world of chronic, life-shortening, illness (him because he had one, and me because of Will). And we both had young children conceived through IVF. I admired his steadfast faith, curiosity, good humor, and seeming ability to pull up his socks and get through some really unrelenting tough stuff first while he was waiting and then after transplant. He didn't want to die. He never stopped trying to get better. He is survived by his wife and twin boys, his sister and her family, and his mother.
I invite you all to join me in remembering Deron and his family and praying for Eva and her recovery. You know that I think the world of transplant technology, and it's getting better all the time, and if you're not already, I hope you rush out and become an organ donor right now. But, what we really need is a cure for CF. If you feel moved to include the doctors, nurses, researchers, organizations, funders and countless patients contributing to CF research in your intentions, I think that would be just great too.