This week Craig Truyens passed away. Just over 2 months after his double lung transplant, all of which were spend in ICU. I received the news when we were in the US, on 21 July. Craig send me a message saying "I know you're probably sleeping over there, but on my way to Milpark, getting new lungs!!!" When I woke up I was soooo thrilled. Even more thirilled than I normally am for patients receiving lungs, because this was special. Criag lost one of his sisters, Dominique, in 2012 due to CF. She was waiting for lungs. Dominique also has a twin sister Caleigh (also with CF obviously). Everyone in the CF community knew the 3 Truyens kids.
Dom's death in 2012 left everyone utterly sad, and with a feeling that Craig just HAS to get lungs. If there is any justice in this world Craig will have a successful transplant. But as I have learnt in the last 8 years, there is no justice in this world. It is absolutely unfair and people who deserve to have a successful transplant more often than not don't have one. My heart bleeds for their family, and especially Caleigh. How do you carry on after losing both your twin sister and brother to the same disease that you have. Not to even mention his poor poor parents and other brother Jonathan.
My week also wasn't fantastic (but nothing compared to the above). Dr's appointment for lung check-up got cancelled twice, then started feeling sick. slight fever, sore body, headache, dizzyness, upset stomach.... manged to see Dr yesterday afternoon. Seems like I have slight infection from my gynae surgery almost 3 weeks ago. I'm really feeling like it's not healing at all, even though I should expect slower healing due to being on immune suppressants.
On the positive side, lung function was exactly the same as 2 months ago, if not slightly better. FEV1% still 44%, and FVC (volume) was up from about 2.78 to 3 litres, which is quite random. Didn't see what the percentage was. So I got some antibiotics (Even though I got given 2 types of antibiotics after the surgery) so hopefully it will help.
Hoping this weekend will be good for the soul and relaxing.