What a difference a year makes...

well almost a year! My last blog post was in August last year. I don't know why I haven't been updating I don't even know if anyone reads this or not but its a good place for my ramblings. What can I say this last year and particularly the last few months have changed everything. I wasn't particularly healthy before had relatively low lung function and ivs quite regularly but I remained reasonably stable on that routine. No major health scares or anything... that was until recently.

So I had ivs in March to keep me going over my birthday as I had a few things planned the main one being Justin Timberlake concert at the o2 arena. I had been waiting to see him for years and snapped up amazing tickets for me, my sister and our 2 friends. It was kind of like bucket list thing to tick off as ive always wanted to see him. So finished ivs blew 40% after which was ok for me and off I went. Bloods were normal so nothing to worry about. 2 weeks later, the day of the concert woke up feeling weird. I had this pain I couldn't place across my chest and was feeling really breathless. I didn't want to risk heading off to London so I decided to pop up to my hospital first for a quick xray find out what was going on get some painkillers and get on my way. That didnt happen xray showed I had a pneumothorax on my left lung. I couldn't believe it I was going to miss my concert I was gutted. So I was admitted and had a chest drain placed in my side. The drain goes in through your ribs into the pleural space and drains the air surrounding the lung. It isn't pleasant and they do it whilst your awake but it has to be done.

X-ray of my lung collapsed

I couldn't have imagined what would happen after that. My lung just wouldn't heal and stay up. The air leak just didn't stop. Fast forward nearly 5 weeks and the surgeons got involved. In this time I had had numerous blockages of my drain, another drain placed as the first stopped working lung kept going up, down, up down it was a total nightmare. I was stuck in my hospital room for 5 weeks unable to leave due to my drain being on suction and I became quite despondent and depressed. The more time passed the more worried and anxious and frustrated and angry I got and it affected me badly. I lost 5 kg due to not eating because of stress and worry and looked awful. I became unable to eat food as the though of it made me feel sick. I was living of liquid supplements as it was all I could stomach. Something changed in me when my sister cried and yelled at me to snap out of it and do what needed to be done. Then my nurse came in and told me my bloods showed I was severely malnourished. At this point the surgeons wanted to step in and do surgery to stick my lung up and seal my leak but I couldn't because I had become so poorly it was to dangerous. They had been in touch with the transplant centre to ask what options we had because certain procedures can rule you out of/make transplant really difficult and I wanted to be a candidate when my time came, especially as it was now looking likely it would be very soon after all that had happened. So the did a blood pleurodesis where they took blood from my arm and put it through my drain into my pleural space. It works but clotting over the leak and then helping to stick the lung up. One week later my lung was inflated with no air leak and the drain came out.

My dog Dexter was allowed to visit in hospital as I missed him so much!

I was hospital for 2 months altogether. I now at home but im still recovering. When I could finally leave my room and start moving again I could hardly walk. My muscles had deteriorated so much from being stuck mostly in bed for so long. But I was determined to get out of there and pushed myself. I have gained 5kg in weight so far as I am now feeding overnight via an NG tube. I am slowly walking further and further but am no way near to what I was before. I have managed to get off oxygen apart from overnight which I never thought I would do.  I have suprised all the doctors/nurses with how far I came in the time I did as they didn't think I would. I wont know for a while how my overall health is. Its still early days really and I cant do my lung function for a few months to protect my lung. But I will be referred to Papworth to meet them as its looking likely I will be assessed at some point in the near future. This terrifies me I never thought id be here yet it al happened so fast. But im still pushing on trying to get as well as I can do for now.