Good afternoon all,
Apologies once again for the radio silence after my last post back in June when you all very kindly gave me some sage advice on whether or not I should continue working full time.
After some considerable soul searching, I decided to take the option of stepping back from my current job and taking a part time position where I work the equivalent of two days a week but spread over three days. It's still early days and I think I'm yet to fully appreciate the benefit of the decision as it's been a busy summer. However, I definitely think that it was the right call to free up more time for me to recharge the batteries, look after me more and try and get to the bottom of some of my on-going issues with my lungs and beyond.
That decision appears to have been vindicated further following my annual lung transplant clinic appointment last Friday. Lung function - my first since in almost 2 years - showed a drop off across the tests which isn't wholly unsurprising given the nature of the fibrosis. I could hardly expect for the levels to have stayed the same (though you can always hope!) and I was prepared to be told that the levels had dropped.
What I wasn't expecting, however, was for my consultant to tell me that the CT scan (taken in March 2020) showed that my airways have widened in my right lung due to fairly significant bronchiectasis. It makes the additional tiredness I've been feeling along with the additional mucus production and nasty couple of chest infections all make much more sense and compounds the huge reduction in lung capacity I've already suffered due to the underlying fibrosis which shows no signs of stopping despite the prednisolone.
The CT scan also shows that my right lung has also shrunk considerably and the combination of the two means that lung transplant as an option is suddenly much more complicated and, possibly, may no longer even be an option. The hospital have requested another CT scan to get an up-to-date view of my lungs and my case will be discussed at the next MDT meeting.
A lot to take in and not much I can do at this stage on the transplant front other than wait to hear back on the transplant team's recommendation. I can only hope that transplant is still an option available to me otherwise my options become much more limited.
In the meantime, I've been reading up on bronchiectasis and it sounds like there is lots that I can do to try and alleviate some of the symptoms and reduce mucus build up. I've yet to hear from my regular treatment team about bringing my scheduled appointment forwards to discuss the new situation but will definitely push for this as I can't help feeling that my passive approach over the past 18 months due to fear of COVID and not wanting to distract them when they're so busy has, in part, contributed to the delay in diagnosis and potentially even removed the option of a transplant.
Overall, I'm not sure what to think at the moment. I've always known that it would come to a point where I'd have to make a call on the transplant but I never thought it would be this early and it never even occurred to me that it might not even be an option on the table anymore.
Lots to ponder over the coming weeks and months but I think what's clear is that if transplant is still an option, it would have to be something that I pursue sooner rather than later if, indeed, I want to go down that route at all. The risks were high before but they're potentially even higher now and there's not even a guarantee that they'd be able to find a suitable donor.
Right now it feels like one thing after another as I'm currently suffering from a nasty chest infection that I haven't been able to budge. I'll fight on but it's been really tough recently and I hate the impact that it's having on my family who are understandably all very upset.
I'll keep you all updated on how everything goes but any tips in the meantime on how to tackle the bronchiectasis and stay sane would be much appreciated.