A year ago today…
It was a beautiful sunny day like today. I had been in London in my CF ambassador role at a meeting the day before so this was definitely going to be a rest day. I decided to embrace the summer with open arms and put on a sundress, a nice new one, but hey if you save these things for special occasions you end up only wearing them twice, nice clothes are there to be worn.
Rather typically, I was sitting at the computer when my lung collapsed. There was no huge coughing fit, I merely cleared my throat and felt what I can only describe as a similar “ping” to when the elastic on cheap underwear goes (have just betrayed a student secret of cheap undiebuying oops).
Enough of underwear…I felt a small ping and my heart started pounding. Now I am not psychic, I have never claimed to be, and I do not understand these things, but what happened next to this day doesn’t really make sense. I had no other sensations at this point but I leapt off my chair and walked quickly to Claire (my oxygen machine) and turned her up to the maximum 5 litre flow. I then grabbed the phone, realised I was still connected to the bloody internet¸ disconnected and dialled 999. Whilst doing this I opened the front door got outside and shouted “fire!” (absurdly following advice from some cheesy teen magazine advising if you are being assaulted to shout fire as people are more likely to come to your aid – who says magazines don’t teach us anything.) it was only at this point I really began gasping for breath. So the inexplicable part remains, how did I know what was about to happen therefore what to do? I had previously had a collapsed lung but it was a completely different experience and felt nothing like this, so experience would have fooled me further. Personally I believe it is an innate survival instinct which kicked in, but for whatever reason I had managed to get outside before my breath disappeared completely and I was forced onto my knees.
My next door neighbour was at my side in seconds closely followed by two other men. Amusingly (well I found it so, even in my breathless state) having shouted “fire” it turns out the latter two were firemen. My neighbour took the phone from me as I couldn’t speak enough to be understood by the operator and explained as much as he could. I managed to get them to understand the world “pneumothorax” (a remarkable achievement considering the volume of my speech and the chaos at the time) and the ambulance was on its way. One of the firemen sat and held my hand till the ambulance came. I think the only thing I said to him was “please don’t let me die”.
That was the beginning of my biggest challenge yet. My lung had obviously had quite enough, as even after surgery, stapling, a day on a ventilator to allow it to recover, the tear refused to heal, and the lung still was not inflating in an agreeable manner. Because it would collapse like an inebriated teenager unaided, I spent 6 weeks with a suction pump attached to me during which time I was attached to the wall which was not fun, I could literally go no further than the end of my bed.
Never one to do things by halves I also decided to get a couple of infections to spice things up a bit and required the odd blood transfusion and once a litre of fluids squeezed in extremely quickly by a nice doctor when my heart was dancing around at dangerously high levels. I spent a month in High Dependency unit, where it is customary to spend 24 hours and my weight plummeted to 6 stone (I have never liked the waif look.)
At first everyone was confident the lung just needed time to mend. Then as the weeks progressed and I was still on suction to hold the lung up, confidence dwindled. There was talk of me staying in till after my transplant which filled me with a quiet despair. After 6 weeks of being stuck to the wall I finally came off suction. Prior to this I had been moved to a side room, as things were stabilizing, which was an oddly daunting experience as in HDU there is always a nurse with you and suddenly I was alone for the first time in over a month.
I learned many things from this experience. That even when things look incredibly black, there is still hope. That things are never black and white, even in medicine. But most importantly, that you are stronger than you think, and this gives me a strong reassurance for my recovery post transplant.
Today is a huge celebration. That episode lasted 3 months and I didn’t fully get back to normal till around November time, and look at where I am now. From being told I might be in hospital or have a chest drain in indefinitely to going dancing, sightseeing and generally being a bit loud and naughty.
If you have managed to read the entirety of this post I applaud you as it is ridiculously long, sorry about that. I want to end by suggesting a good deed for the day. A fellow lass waiting for transplant (not CF) suffered a similar collapse in February. She was on a ventilator for weeks and is still in hospital with no signs of an escape (also proof that I should be thankful for the recovery I made). She has a website with a guestbook on it, and her dad prints out the messages for her to read. Please go and leave her a message, about anything and everything, as I cannot tell you what the support from all my friends did for me, particularly on the hardest days. After that go out and enjoy the sunshine! YAY life!
Update to say there is no update!
1 week ago