Afternoon all,
Apologies for the radio silence for the best part of six months. I never intended to leave it this long before updating you all but life (and a certain little miss) got in the way!
Cassie Jean Jackson came kicking and screaming in to the world at 8.28 am on Monday 16th October last year and life hasn't really been the same since! Lots of sleepless nights trying to get to grips with everything and a difficult delivery which left Lauren feeling very poorly but I'm delighted to say that all three of us are doing really, really well 
After much deliberation, I decided to take time off the lung transplant list to make sure that I was around for the birth which was just as well as it wasn't the easiest. The first few weeks were tough, too, but absolutely precious and I'm delighted that I was able to enjoy Cassie's first Christmas without having to worry about whether the phone would ring or not to bring me in for the transplant.
I went back on the list at the beginning of the month and am ready and waiting for that call. However, it feels different now that Cassie has arrived. There's so much more at stake and getting my head around how we're going to cope if/when the call comes unnerves me a bit. I know we'll find a way but it's definitely added to the pressure and uncertainty. I didn't make the stress levels any easier by signing up for an intensive driving course (yes, I can't drive!) with the view of doing a test at the end of February. I haven't done badly with the lessons but I'm no natural and finding time to do any kind of practice in between the lessons has been nigh on impossible. This got me super stressed and so I made the decision to take away the pressure of the driving test at the end of February to do the learning at a more sedate pace. I've survived without being able to drive for 23 years so another few months isn't going to do any harm!
Lung wise things aren't too bad. I've only had one infection so far over the winter period (I think the doxycycline really helps with that) and at my last check-up the lung capacity hadn't dipped dramatically while my 6 minute walk test had improved along with my oxygen transfer so they were pretty pleased with me. I'm convinced that all the exercise plays a huge role in all this but it would be wrong to overlook the impact of the nintedanib, too, which certainly seems to have helped stem the flow. Hopefully, it'll buy me the time to get that transplant before my window closes.
I don't know how others that have been on the lung transplant list feel but I have definitely found that the mental side of things has got harder with time. For me, a lot of it is frustration tinged with fear that it might never happen. I feel like I've been treading water now for some time now and I've been getting a bit impatient. At the same time, I feel like I've lost a bit of my mojo having given up the job and living at home with my Dad, while beneficial in many ways, feels like a big step backwards when Lauren and I want to be moving forwards with our lives.
I had a bit of a tough couple of days a week or so ago but I've emerged out of the other side now with a renewed enthusiasm. Having waited this long, I just have to hold my nerve and remember that it will all be worth it in the long run. The transplant is my only ticket to getting elements of my old life back and giving me the opportunity to do things like take Cassie swimming or get a plane somewhere without fear or limitation. That's why I'm on the list.
In the meantime, I'm finding time to exercise again - easier said than done with a three month old - and I've started putting feelers out for possible volunteering opportunities to help support Asthma and Lung UK and Blood Cancer UK.
This year will mark 20 years since my lifesaving stem cell transplant so I want to mark that with a fundraising and awareness event befitting the occasion. I also turn 40, have a driving test to pass and an amazing, beautiful daughter to raise. So lots to look forwards to with or without the transplant.
I hope everyone is well and thanks again for all the messages and the support. Tricky times still lie ahead but they'll all be worth it if in the end I'm sure.
Lots of love and respect to everyone as always,
Andy
Sick of the medical world
Bronchiectasis /azithromycin , emphysema, transplant ....help
Tomorrow is not just another day!! (Keep Calm)
Good news
