While the survivor stats have a lot left to be discussed pertaining to CF patients and how to almost certainly increase odds, this is a very, very good video made in Australia. Hat-tip to Kristin for finding it for me and showing me.
The US statistics are pretty similar but there is an issue with them: they don’t separate out by diagnosis. As such, they don’t make any distinction between a 70-year-old who experienced either acute respiratory failure or COPD from 55 years of smoking versus a 25-year-old CF patient. There is also no record in these stats of whether the person was compliant with the medication after transplant – it’s purely a “did you receive a transplant and how long did you live” statistic.
In social media connections we have, we’ve run across CFers transplanted in the 1990s who are doing great. 22 years, 25 years, 27 years, and 32 years! These are all “old” men and women now with grown children and grandchildren. The first lung transplant performed in the southeast US just celebrated 26 years.
Of course, getting a good pair of lungs is a big factor, but the number one factor after transplant is being compliant with the regimen of anti-rejection medication. As a CFer, we’re most used to this daily routine – it gets dialed up a few notches with specific times instead of “twice per day” and leniency for missed doses. I’ll live the rest of my life with phone alarms going off to ensure I don’t miss a dose. Perhaps after a few years, I won’t need alarms, but we won’t be taking chances.
So, with this transplant, we’re not just looking at buying a few years. We are looking at seeing our boys start families and actually using my retirement savings together.