Wednesday, April 25, 2007

After a thoroughly busy week last week where I was hardly home at all, I have decided that this week should be a little less hectic. It’s just I am so eager to take up every opportunity that wasn’t open to me before and drinking it all up thirstily. I also have a slight fear deep down that this is all going to be snatched away from me; I have had well periods before, but they would always just be a temporary thing before the next decline. I am still having trouble getting my head round the idea that things are going to improve not get worse! I am running on the automatic response I have developed over time of trying to cram everything in as quickly as possible so that I don’t miss out on a single thing. Mind you, it isn’t doing me any harm, I am sleeping well, and I am sure I will relax a bit as time goes on and I get used to being able to just “go and do”. SUCH a lucky girl...

As February progressed, so did the improvements in my health. I moved on from mere liquids and tasted soup (which the lovely dinner lady strained for me) for the first time. They would also regularly deliver different flavour juices to get my taste buds working again. On her next visit, the swallow lady agreed that it was probably time for me to attempt some very soft food. In complete over excitement I selected lasagne, much to the dietician’s horror, as she had envisaged a yoghurt or something similar, and pointed out that my idea of soft may vary from theirs.

I had done away with the ventilator completely by now and used only bi-pap, spending more and more time on just the trachi mask with no support at all. Even though it was still hard work as the medical team continued to push me, I enjoyed increasing amount of time I spent being able to breathe on my own and not having air forced in by any mechanical means. I still needed assistance in sitting up and moving to the chair, but it now only took one nurse to guide me gently round as opposed to two nurses plus a standing frame.

My physio continued to find new and interesting ways to try and test my strength and expand my new lungs. One Tuesday she wheeled in a large exercise bike. Getting on it was probably the biggest obstacle but once on I managed several minutes continuously before grinding to a halt. The factor which caused me to return to my chair was actually the hard and awkward shaped seat hurting my rather skinny behind. The entry of the bike into my recovery was a big boost; I remember clearly the summer before when I had a collapsed lung and a chest drain in situ, sitting on the bike, peddling slowly with tears running down my face with sheer effort, so now a bike was in place I was in more familiar territory.

Things moved rapidly on from the bike. I was lying in bed watching the door, waiting for the physio to arrive, and she bounced in brandishing a CD which turned out to be something along the lines of “The very best line dancing album in the world ever”. So up I got and holding onto a physio either side of me began an unsteady and slightly uncoordinated line-dance, weaving side to side and forwards and back, in time to the music. My brain wanted to do a sharp, slick, synchronised dance but my legs would only let me shuffle and wobble to and fro, like a pensioner who has had a tad too much sherry. Our strange trio hobbled around the room, much to my mother and A’s delight, until my legs began to buckle and I sat back down on the bed. When the physios left, A pointed out that even though my legs had given way, I was hardly breathless at all; already a huge change to how I would have been with my tiny old breathers.

The day after this comical dance routine, it was decided that I was well enough to be moved to the main Transplant ward. This would be a huge step in the right direction, with small but precious differences such as the open visiting hours bringing me one step closer to normality. I was extremely nervous as during my time in Intensive care, I had had a nurse with me 24 hours a day. They were prepared for my anxiety and had been trying to get me used to it by leaving the room for short periods of time over the last few days, but I was still very unsure of how secure I would feel, alone in a new environment. My nurse from ICU came down with me and stayed with me for the whole afternoon, setting up my room and putting up my cards so it looked a more warm (and infinitely more pink) environment. As her shift came to an end, she smiled at me warmly, squeezed my hand, told me (again) that I would be fine, and shut the door.

Being alone for the first time in 2 months was extremely strange. There was an eerie silence, as I had become accustomed to the gentle lull of noise and discordant bleeps which permanently echoed around intensive care. I lay perfectly still – a strange instinct which comes into play whenever I feel threatened or unsafe, as if by being still my body won’t let me down – and concentrated on staring at the cards which adorned my room to keep from panicking. The ice blue plain walls which were usually so cold and uninviting were literally covered in cards of all colours of the rainbow, although admittedly predominantly pink and most with a few glittery bits so they would sparkle as the fan caused them to move gently in the breeze. As the minutes ticked on, I began to feel more relaxed, and before I knew it the nurse was in the room drawing up the evening drugs. It took a few days to get used to this new lower level of care, but as time went on I began to enjoy the new periods of privacy this allowed me to experience.


Emmie said...

Fantastic :o) xxxxxxxxxxxxx

Anonymous said...

I check every day to see if you have written a new blog (or blogged - is that a new word?)
Keep them coming - great reading

Anonymous said...

Ooh, it must be very strange to suddenly be on your own, even for short periods, when you haven't been alone for quite some time, especially when there is also less machine-beeping noise around but, being the tough cookie you are you, you managed it, of course :)
It must have been very relieving, for you and the family, to be moved from ICU to the ward, such a big and important step! Yey for new lungs, and the line dancing! ;)
Muchly love, Kat xxx

Anonymous said...

Like a previous poster said, I too check your blog regularly for the next update to your blog. Great reading, you are a true inspiration.


Anonymous said...

Emily, what a fabulously courageous and tenacious young lady you are....Recovery must have been very very difficult but you faced every little hurdle head on. Stop worrying about the present good health being only temporary, it's not - keep on repeating how happy you are to have a perfectly healthy body and mind and things will just get better and better. Glad to hear you are easing up a bit this week on the activities; a bit of rest never hurt anyone. Have fun..........
hugs, Janet

Anonymous said...

I dont blame you for getting out there and enjoying yourself... When Im well thats what I do... But I know that nothing can stop you now..
Thank you so much for the insight into your transplant, as this helps me so much to understand what may be ahead of me, and hopefully stop me from panaching to much when that time comes!
Thanks Em

xx Sandy xx

Anonymous said...

Sandy, I'm rootin' for you too every day...And Emmie, Peter, Lisa and all of you waiting for a transplant. Keep well, all of you

Fi said...

Thank you for your comments recently wee one, they mean a lot coming from someone who's been through it all and then some! Your story is amazing, coming out the other end must be a wonderful sense of achievement.
lots of love

Sarah Milne said...

Fab weekend Em, well done :-) Good luck at Harefield today, will be thinking of you as always and waiting anxiously to here all is OK.
Great news about Lisa too.
lots of love
Sarah x x x