Entering 2022, I'm not disappointed to be waving goodbye to 2021. Covid ruled over us all in the early part of the year and then reared its ugly head again at the end of the year to add further anxiety and stress. However, for someone who up until March was having to shield, in reality it never really went away.
While others began to go back about their ordinary lives I, like many in the at risk category, had to hold back and avoid crowded spaces. I wasn't 'free' like everyone else and had to make difficult decisions which meant I often missed out on doing things with friends and family. By extension my wife and Dad also had to miss out on doing activities that they may otherwise have done. This got me quite down at times and like many I felt a bit abandoned by the government. When they lifted the lockdown restrictions, it felt like they absolved all responsibility for vulnerable groups, leaving it down to us to make all decisions on what to do on our own and without the support of some proper guidelines for the general public that would have made me feel a little bit more comfortable.
Like many I erred heavily on the side of caution, going just once to the cinema, avoiding all live sporting events and deliberately picking pubs with outside spaces for meet ups. I've never truly felt relaxed but I am encouraged by how well the vaccine appears to be holding up against the latest strain. I have my booster - three months to the day since my first vaccine - on Saturday and after that I'll be in as good a position as I can be when it comes to Covid.
I've also had my flu jab and re-started doxycycline to provide me some base level protection against chest infections which have begun to get more prominent since the bronchiectasis that has started occurring in the upper lobes of my right lung as part of my disease progression.
After three chest infections in as many months, I've managed to avoid picking anything up over the Christmas period which is a huge bonus as I enter what is going to be a pivotal and potentially life-changing year in regards to my lung health.
In the aftermath of my CT scans and follow up consultations where it was made clear to me that I need to make a decision sooner rather than later in regards to lung transplant, I await a date for a full lung transplant assessment where I will be put through my paces and ultimately make the final decision on whether I go on the lung transplant list or not.
It's a big call and one that isn't as clear cut as I originally thought when I was first informed that lung transplant as an option was something that I would need to consider now.
The problem is that I am something of an anomaly in that I'm not really unwell enough yet to be normally considered for a transplant. Despite having a lung capacity and oxygen transfer rate of less than 50% I remain hyper functioning so while I can't do things like running or swimming I can still cycle, walk miles and hold down a job. However, if we wait until I am less able to function my window for having a lung transplant may have passed.
This is due to the nature of my lung disease which has seen my right lung shrink dramatically. As a consequence, the chest cavity has also shrunk which means that the right lung will have to be cut to fit the gap. At one stage, my transplant team were considering single lung transplantation as an option whereby they leave the right lung and only replace the left one. That option is no longer viable due to the bronchiectasis in the right lung which would leave me extremely vulnerable post-transplant when I'd be heavily immuno-suppressed. As it stands, the surgeons are confident that they could perform the surgery to replace the right lung but my disease continues to progress meaning that there is no guarantee that that will remain the case another year or 18 months down the line.
As with nearly all aspects of lung disease, there are no certainties and this makes the decision a tricky one to make. If I do nothing, my lungs will get worse and at the current rate of decline I will be around a third lung capacity and oxygen transfer within the next 4 - 5 years when people difficulty require oxygen and have a much more limited quality of life. If I go ahead with the transplant there is the obvious huge risk that it will not be a success or will only be a partial success with the national 5 year survival rate set at the slightly daunting 50%.
I've always been an optimistic person and my gut is telling me that I should take the transplant as it offers me the possibility of a future without lung disease and all the potential benefits and freedoms that I've not been able to enjoy for some time like running, flying, swimming and being able to live care free for a few years at least. However, I need to be sure that this kind of future is, potentially, on the table if I do go ahead otherwise I'm not so sure that it is as worthwhile as I initially thought.
Should I get the all-clear medically that I'm suitable for transplant and I agree to go ahead, I will go on the transplant list immediately and could, in theory, be called up at any time after that should a set of lungs become available which they feel I am the best match for. As a result, I have to be ready with less than 24 hours notice which is quite scary and makes planning ahead almost impossible.
So I'm at something of a crossroads when it comes to my future with a lot of things to sort out entering the new year. Mindful of that, I made the difficult decision to call time on my role at the Asthma UK and British Lung Foundation after four brilliant years just before Christmas so that I can take time to make the right call and prepare myself for the subsequent challenges that lie ahead.
I'm very fortunate to be able to count on the support of amazing family and friends as well as some brilliant people as part of this community on Health Unlocked. Your advice and support have always been amazing and if anyone has any advice or experiences of transplant or knows someone who does, I'd be more than grateful to hear from you!
Happy New Year to you all - here's hoping that 2022 is a healthy one for us all!