It's safe to say that 2018 hasn't exactly started according to plan!
Less than a week after my big appointment and tests with my team at the Brompton I had to take myself to A&E after suffering acute chest pain and slightly increased breathless after a work out at the gym.
X-rays revealed a rather sizeable pneumothorax in my right lung which the team at St. George's wanted to treat with a chest drain immediately. However my treatment team at the Brompton were, rightly, more weary of putting a drain in for fear that it might result in infection or aggravate my underlying lung disease.
The result was a hasty admission to St. George's for overnight observations ahead of a follow up a follow up X-ray the following morning which revealed that the pneumothorax hadn't got any smaller but importantly hadn't increased either. As a result I was allowed to go home and told to come back the following week for another X-ray to see if the unwanted air between the pleura and the lung was making its own way out.
To add to all the confusion and uncertainty it turns out that the Brompton were already aware of the fact that I had an underlying pneumothorax from the chest CT scan that they had run on the previous Friday! Unfortunately they neglected to tell me about it or the importance of avoiding doing any exercise and exacerbating the situation.
The evening after my initial discharge from St. George's I got a call from a member of the team at the Brompton to check in on how I was and what St. George's treatment plan was. The registrar was also at pains to 'apologise for any misunderstanding' regarding the pneumothorax however there was no misunderstanding - they just didn't tell me!
I found it hard not to feel a little angry and upset as the whole situation could have been avoided. It was also hard to stomach the news that the lung might not fully re-inflate and if it did I would now be more prone to further pneumothoraxes in the same area.
However, I'm not one for holding grudges either and having voiced my frustrations and disappointment I turned my attention towards doing what I could to rest up over the weekend in a bid to do what I could to make sure that the pneumothorax sorted itself out.
Last Monday I then got another call from the Brompton who having reviewed the X-rays from St. George's wanted me to come in so they could make their own assessment on the Wednesday. Another X-ray and CT scan later confirmed that the pneumothorax was actually getting even bigger and the decision was made to have the chest drain put in after all.
I'm not sure if any of you have had a chest drain inserted before but the process isn't the most pleasant one and isn't helped by the fact that you are conscious throughout. However it was a necessary evil and over the course of the next couple of days the air pocket did begin to pass and the lung started to re-inflate.
By Friday they were confident enough from further X-rays that the pneumothorax had gone and the lung re-inflated and the drain was removed. After another positive X-ray after a night under observations without the drain I was finally able to go home a bit battered and bruised on Saturday.
It's a huge relief to be out and on the road to recovery but I know many more difficult challenges lie ahead - not least the prospect of a lung transplant in the next 5 years as now seems likely based on the current rate of decline in my lung function test scores.
That's a scary prospect that I certainly hadn't envisaged being quite so soon. Certainly this wasn't how the team at the Brompton had been presenting things or indeed would have continued to present things had I not pushed them for some sort of prognosis.
I fully appreciate that a lot can happen in 5 years and that there are many factors at play that making a prognosis almost impossible but it's good to have a ball park figure as it gives me something to work with and will help me plan going forwards.
I appreciate that not everyone wants to know and that doctors often don't want to give you the bigger picture as they don't worry you but I'm one of those people who does want to know exactly what they're up against and whilst scared I actually feel a little relieved that I have an inkling of what lies in wait.
Out of curiosity I'd be interested if anyone else was similar in outlook and also had to push to get more honest answers out of their treatment teams?