Afternoon all!
Mindful that it has been a fair while since my last post - much longer than intended. However, in many ways it's a good thing as it means I've got more to update you all on.
First and foremost, I'm still on the lung transplant list and have yet to get another call since being re-added back in April. Frustrating, especially with the baby on the way, but ultimately nothing that I can do about it. The only thing to consider, potentially, is wherever I should come off the list for while to make sure that I'm around for the baby when she arrives in October and the first few months which will obviously be tough.
On the surface, it's a no brainer to take the time off the list however it's not quite as easy as that given the complexity of my particular case. The surgery is already complicated as it is and there is a risk that delaying the transplant - albeit for a few months - might see the transplant become too complicated to carry out. I've still got a bit of time before I need to start thinking about coming off the list as should the call come sooner rather than later I'll still be out of hospital and through the worst of the recovery by October. I think if it hasn't happened by the beginning of September then I'll have to give it some serious thought...
In the meantime, I have to focus on the things that I can control like staying as fit as possible. In this regard, I've done really, really well in recent weeks thanks in no small part to the home oxygen that I'm now using when I work out. It has been an absolute game changer not only in helping me to exercise for longer but also recover quicker. I feel the best I've felt in ages and now really look forward to getting on the exercise bike and pushing my boundaries. I even tried a run on the treadmill a couple of weeks back which I'd NEVER have considered before the oxygen showed up. Given the impact that it can have it does make you wonder why I, and others, aren't offered oxygen earlier. However, I know that you have to meet certain criteria (like oxygen sats dropping during the 6 minute walk test) to be eligible. For me that didn't happen until February but I think that my sats were probably dropping on exercise well before that.
My recommendation to you all would be to get a little oximeter as a starting point. If that indicates that your sats are dropping on exertion then you can then go to your consultant/GP and kick-start the assessment process which will include the 6 minute walk test.
I've also been busy getting the nursery ready. This has been a welcome distraction from all the waiting around for the transplant and means that we will have one less thing to worry about prior to transplant. Yes, it's earlier than normal but if I got the call tomorrow then there's no way we'd be able to get the nursery ready in time. Even if we could, we'd be putting ourselves under completely unnecessary additional pressure when we've already got more than enough on our plates!
Nothing much else to report other than Covid not seeming to have left any long-term side-effects bar a bit of a chest infection immediately afterwards which was quickly nipped in the bud with antibiotics. Since then I've had my latest booster and done lung function which indicates a slow down in the rate of the disease progression. This is obviously great news and could indicate that the Nintedanib is having some kind of beneficial impact.
Last and by no means least, today marks 19 years since my Mum passed away. While the pain has eased over the years I do still think about her a lot and often wonder what life would be like if she was still around. Mum taught me to fight for what I believe in and to never give up. I'm doing my best to do both those things and hope she's proud of me!
Thanks as ever for all your amazing support and comments. This community is amazing!
Andy
Is oxygen ineviatble?
PIP ....Oxygen
Oxygen Therapy
Quick question on oxygen.
