We had a fantastic Christmas, all home and well. At times like that, it’s easier to shut CF into the back room and ignore it for a while. Even better, Isaac enjoyed his first solo trip (to Germany, to visit a girlfriend). This felt like no small win - CF so often scuppers plans at the worst possible time it can feel like the whole worlds shitty fate is against you. He had a brilliant time, came home loved up, and is planning his next trip back in the Spring. Despite the rampancy of flu and other viruses going around, he has escaped most of this, but his lungs are starting to protest more now. He’s also experiencing more of the confusing episodes that he had late last year. For that, we’re waiting on consultations with other teams and further test results. If I dwell on this new challenge, it’s easy to feel bitter, he already has too much to contend with - but my sunny side says we will work it out.
I’ve said before, that while we have a pretty good idea what his lungs are like at any given time now (fruity, rumbling, wet, dry, wheezy, clearing, plugged…) we still occasionally surprised by either good lung function results when he is symptomatically much worse, or vice versa. Right now, we have the former, and so wait and hope he can avoid another course of IVs as we’re only a few weeks out from the last lot. Excitingly, he has been invited to screen for the next phase of a gene editing clinical trial, only one of four patients in the UK. I can’t say too much due to confidentiality- but suffice to say we are keen as custard. Hoping to start next month, which is another reason to hope he won’t need IVs anytime soon (he cannot start a trial within 30 days of extra treatment, that is, beyond his daily routine).
Organ donation is something I’ve always felt strongly about, but even more so since I unwittingly joined the CF community. I have lost friends waiting on the list, and others shortly after (her body likely too weak after end stage CF to survive other complications). I’ve also known friends to be enjoying a full and healthy life many years post transplant. This can and does truly change lives, and yet despite changes to the law that were supposed to increase the number of people signing up, the reverse is happening https://www.organdonation.nhs.uk/get-involved/news/international-experts-advise-on-action-to-support-more-families-to-say-yes-to-organ-donation/ Please don’t only sign up, but tell your next of kin of your choice, as whatever you say now, it becomes their choice after your death x
Lee Miller ❤️
