In less than 24 hours, my inbox has been buzzing, my Facebook page is overwhelmed with letters, shares, and I am literally floored by what has transpired. Gratitude is my word of the day, the week, likely the rest of my year and beyond. I wanted to post an update, to address some questions that I have been asked, and bring everyone up to date on what has happened since my post yesterday.
My hands shook as I published yesterdays post, and it took about 5 minutes (thanks Twitter) for things to start happening.
As a history of Keith's illness (which has been officially diagnosed as Diffuse PanBronchiolitis - see here) he saw a doctor in the late 90's for a chronic cough. Multiple misdiagnoses later (asthma, COPD, CF and more) the only one that seemed to fit was DPB. He was written up in a medical journal here, because he was the only caucasian man in Canada diagnosed with the disease, that traditionally attacks people who are asian. DNA testing proved that he had no asian history. He was officially an anomaly, which we are beginning to understand is not uncommon in the world of lung diseases. To be clear, he has never smoked a day in his life, was super active, and a healthy weight.
Enough medical mumbo jumbo though. Since yesterday, I have been contacted by many people, offering practical suggestions as to how to navigate the medical system. I was directed to call patient services (which I did and got some information, and followed up on Keith's case - was assured follow up mid week next week), had someone who knew a key part of the transplant team and was going to work that angle... right up to one person who knew someone who was good friends with a doctor on the team at TGH. I am expecting a call on Monday morning from that doctor, after he reviews Keith's case.
Many mentioned Hélène Campbell (@lungstory on Twitter) and her amazing story. I was very familiar with that story, and had tagged her in tweets but no response. Then another friend messaged me that they could try to get in touch with her directly. Waiting on that, and frankly, a little starstruck :)
The coolest thing about all of this is that, in less than 48 hours I have spoken with three separate people who have had, or are spouses of someone who has had, double lung transplants. These are the heroes, whether they had their 5 minutes of fame in the news, or were quiet and the system just took care of them, they have lived this personally, and the intensity of how I was drawn to them and their stories, is shocking. I cannot get enough information, and the personal stories of each of these people are so inspiring. People have been in touch to share their stories, and if they want, I will share them here.
Thank you all, for your wishes, your prayers, your suggestions, and for sharing this story with as many people as you can, to spread the word about the importance of organ donation. The conversation is awkward, but so important. To learn more, go to beadonor.ca, and follow them on Twitter at @trilliumgift.