The update is that she's no longer being assessed for a lung transplant and all the earlier assessments that were done has expired. Last year we all thought she would be moving to Toronto within the year. Obviously we were wrong.
Since being off work, her lung function has stabilized around 30% of the predicted value. Clearly that isn't great but it's now too high to be considered for a lung transplant. The official criteria in Toronto is that your lung function has to be less than 30% and a few years ago Amy would've qualified for a transplant. However, in the last few years the wait list in Toronto has gone from long to longer with more and more people needing transplants and a very low donation rate in Canada (roughly 30% of the population is registered as an organ donor and 20% of families veto the organ donation choice after their loved one has died).
Amy, thankfully, has been able to stay relatively infection-free since no longer working which has meant no more hospitalizations. Because her lung failure is a result of scarring and general failure rather than an active infection, there is no feasible way to improve it without a drug like Kalydeco or Orkambi becoming affordable (currently cost is $300,000/year and developed for our CF mutation).
While Amy tries to keep her lungs stable as long as possible, she'll keep drinking coffee and finding cliffs to stare off dramatically.
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