Been a while again since my last update.
I was hoping to bring you definitive news on the transplant situation but we're not quite there yet as I've still to meet the team to discuss when to go on the transplant list and find out how long my window of opportunity might be. However, the good news is that they have got back to me to confirm that I am suitable for joining the waiting list which they will recommend if I decide that's what I want to do as there are no medical contradictions to the contrary and they feel that the time is now if we want to ensure that transplant is something that they can consider surgically.
That's a huge relief as I was worried that they might have found some issue with my heart that makes transplant impossible. I'm almost certainly going to decide to go on the list but I need to talk to them to find out more about going on the list and when I should do that. I appreciate it's got to be sooner rather than later but if, say, they feel I can take the summer before going on the list without it putting the transplant into jeopardy then that's something to consider.
In the meantime, I've booked in at the dentist to hopefully get a full bill of dental health that I need before they'll consider putting me on the transplant list. I've also started on the Nintedanib which, touch wood, hasn't caused any nasty side-effects so far which is great. No idea yet just how effective it might be in the short to mid-term but hopefully it will slow down the scarring to some extent to give me the best shot of getting the lungs through to transplant before my window closes.
I've also had my second Covid booster - 5th vaccine in total - after a bit of back and forth with my GP. Ridiculous that you have to push so hard to get a vaccine you know you're entitled to and have received a letter inviting yourself to go for but that's the way of these things sometimes and I know there's a lot of confusion abound. In the end, I had to go through 119 as the GP is no longer organising boosters in my area any more. Once I got through to a person (you've got to be very patient and persistent) it was really easy. Well worth pursuing this route if you're finding the going tough with your GP and haven't already had your latest booster...
Speaking of Covid, my Dad and I managed to avoid catching it off my wife who is now fully recovered. She is normally super fit and healthy but found it tough going for a few days and only returned negative lateral flows after 10 days so it stayed around for a while. Just goes to show that it very much hasn't gone away despite government's best efforts to seemingly sweep it all under the carpet.
Our recent IVF cycle was also successful and we now have 4 good quality embryos which we've put on freeze for now while we figure out next steps with the lungs.
Last and by no means least, I celebrated my stem cell transplant for leukaemia at the weekend. It's now 18 years post-transplant and leukaemia free for me. Whilst the transplant may well have played a part in my lung disease, I don't regret my decision in the slightest. If a lung transplant is anywhere near as effective I'll be a very happy man!
I think that's everything for now but in the meantime I wanted to encourage anyone currently on Nintedanib to consider submitting a few lines to Asthma and Lung UK for them to include in their consultation response as part of NICE considerations to wider the qualifying criteria to include those with FVCs of 80% + For me personally, it's a no brainer that anything that can slow down the rate of fibrosis could and should be available to patients at the earliest opportunity. Alternatively, you can submit your own response directly to NICE though the process is quite fiddly. Here's the link:
Really hope you're all well and wish you all the best as we rush on towards the summer!