Recent losses in the CF community...

The past 3 weeks has been a terrible time in the CF community. Three people that I knew (two from Facebook and one in "real life") passed away, all more or less directly after transplant. All three were wildly excited when they got the call for new lungs, and none of them ever left the hospital. They all passed away from different complications. They were all 25 and younger... the same age I was with my first transplant. RIP Vanessa (25), Storm(22) and Claire(21)...

This article basically sums up my thoughts about the life expectancy with CF exactly:

"the median age of death for people with cystic fibrosis in a given year remains BELOW 30 years old, and has for quite sometime.

Simply put, half of the people cystic fibrosis kills are younger than 30 years old."

It is encouraging that according to the American Cystic Fibrosis Association "In 2016, the median predicted survival age of those born in 2016 was 47.7 years (95 percent confidence interval: 45.6-51.1 years) as compared to 41.2 in 2015". I doubt that this will be the same for SA, as we don't have access (definitely not easy access and not for your average South African family) to some of the groundbreaking new medications like Symdeko, Orkambi and Kalydeco. It should definitely give parents of newly diagnosed children/infants with CF hope though. And hopefully by the time that children born with CF now need transplants, those will also be a lot more advanced, AS WELL AS the medication to prevent and treat rejection.

If you want more info on understanding the medial age of survival, read this article.... however I wouldn't suggest reading this on a Sunday evening when your brain is sleepy.

For those of us who are older though, these new statistics mean nothing. according to this article, "Historically, children with CF died as infants, and as recently as 1980 the median survival was less then 20 years. ". This graph is pretty cool... I was born in 1984, at about the time the first lung transplants started being performed for CF.

Something that's hard for me to understand, is why both my transplants went so well, with no complications, when the same wasn't true for Storm, Claire or Vanessa. I know there is no point in thinking about it, as EVERYTHING in life is basically unfair. But it sure as hell makes me feel extra grateful and blessed. And more adamant than ever to enjoy life.