Went to Harefield yesterday for my regular check-up. Things continue to look good with both lung function and blood results improving (woohoo!) I found out yesterday that I have a paralysed diaphragm; during the complex removal of my old lungs the nerve which runs to it must have got damaged. Apparently there is a chance it will come to life in the next few months but it might decide to lay around in a dormant and slobbish fashion forever. I was a tad anxious about this as you can imagine (one would assume the diaphragm is quite essential for breathing and the like) but was told I shouldn’t worry too much I just might never get full capacity with my new lungs. I also do have some remaining damage from the huge infection I contracted at the beginning, but that didn’t surprise me as it would have been a miracle (or the ending of an overly cheesy film) if I had come out of that unscathed.
Seeing as I already feel so amazing with 50% function I think I am extraordinarily lucky as it is and will focus on how I feel now as opposed to where my lung function might/should be. I was also told I can now go swimming, which I am completely over excited about as I used to love swimming and haven’t been for well over two years. You will be able to hear the whooping and yaying all over the country when I step into that pool for the first time. People are already signing up to do the Hydro Active with me (hurrah!) and we have just set up a justgiving page (which is still being jiggled about and added to): www.justgiving.com/emilysangels2007
The 11th February was a day of excitement on the ICU ward as Richard and Judy came to visit. Although still feeling considerably down and nervous of pretty much everything I was awake this time and looking forward to seeing them. They came in one at a time with my mother and were wonderful visitors; my mum said she hadn’t seen me smile and look that animated since I had the transplant. They also spoke to other patients and relatives on the ward, lifting the atmosphere considerably and bringing a rare but positive excitement to ICU.
I remember the day after that very clearly, as it was a dreadful day panic attack wise. I started to get quite severe ones whilst on the ventilator, but even once I came off it they continued to escalate and I would almost paralyse myself in a state of fright. I was furious with myself as I knew it was psychological and felt I should be able to get them under control but it was just impossible. I had had minor panic attacks before but all my usual techniques such as picking up the phone and phoning someone or moving around and doing something to distract myself were obsolete as I was still stuck in a horizontal position and unable to speak. A friend and my youngest sister came to visit and watched helplessly as I worked myself up into attack after attack. Over the next week continued talks with the psychologist and advances in my health would help me get these retched things under control.
This Monday was also highly significant for a much more positive reason; the speech and language therapist came to visit (who I renamed “the swallow lady” due to my eager focus that this lady would allow me to drink again for the first time, and much to everyone else’s amusement). She examined my swallow reflex and decided it was safe to give me a few sips of water which was dyed blue, so they could confirm that I was not aspirating it into my lungs. After passing this test, I was asked what I would like to drink (clear liquids only) and chose apple squash (which my uncle had driven up specially on my request). After over 5 weeks of nothing passing my lips, to sip a sweet juice was just heavenly. Drinking is the thing I missed the most (more than talking surprisingly); I think it must be deeply embedded in human nature to drink as despite the fact I was drip fed therefore not thirsty, I yearned for a drink and frequently dreamt of just gulping great glasses of juice or even just water.
Two days later marked another huge landmark in my recovery and return to humanity; I tried the speaking valve for the very first time. A couple of days before I had had my first experience off the ventilator with just a “trachi mask” on (a mask which blew 8 litres of oxygen into my trachi but had no mechanical support so I was breathing on my own) and had managed a grand 10 minutes before becoming tired. Each day I built this up gradually, and was now ready to try speaking with my new, slightly-stronger lung muscles. The first thing I said was a very unimaginative “hello” and the second “I don’t like this” (meaning the feel of the whole thing, what a delightful patient I was). My mum came to visit that afternoon and I put the valve in as a surprise for her, so when she entered the room I said “hello how was your day” at which she started to respond as normal before screaming with excitement when she finally clicked.
These two small replacements of normal human behaviour seemed to really boost my confidence and spirits as the improvements continued at a good pace. On Friday 16th, the physio came into my room and announced we were going outside. I was slightly taken aback and assumed she had the wrong patient, as I was still wired up to huge amounts of equipment but no, she, two nurses and a technician all began busying around me, moving various machines, monitors, catheter bag and drips onto a large metal trolley and helping me transfer into a chair, wrapped head to toe in blankets. Our strange procession weaved its way slowly through the unit, and out of the nearest fire door. The blast of fresh air on my face took me aback sharply. I hadn’t experienced any fresh air at all since entering ICU as you are not allowed to open the windows to due infection control regulations. The air was crisp, fairly cool and extremely fresh. I struggled to focus in the daylight, and looked over to where the road was to see cars going by and people walking along the pavement, going about their daily business. The intensive care unit is really like a whole separate world and I was becoming fairly institutionalised by this point. Despite my fears of going outside (leaving the safety of the plug sockets and O2 to be reliant on battery packs and a cylinder made me extremely nervous) those 10 short minutes were enough to start stirring my senses again, senses that had been dormant for the last month and a bit and now needed to be awoken and used once again.
Update to say there is no update!
1 week ago