Saturday, April 21, 2007

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):

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.


The Life of a Paed Heart Transplant Recipient said...

Really pleased to read this latest update!

Just wanted to add that Lucy had a paralysed diaphragm on the left hand side after her first o/h surgery as a baby. It took a while, but the nerve did come back.

Take care, thinking of you always.

Bev xx

Anonymous said...

Yey for the return of Emily's Angels! :D

Sounds like a tough time you had over this period - I've been lucky enough to never suffer a panic attack but I imagine they're pretty awful, especially if you're stuck lying down and wired up to numerous machine :S On the bright side the speaking valve and trip outside sound brilliant, a real boost :)

So glad your checks at Harefield are going well...hopefully the diaphragm will sort itself out soonly!
Love always, Kat xxx

Anonymous said...

Yaaaaaaay! I now have to compete with you at swimming as well as running (two activities that despite my heathly and toned appearance I am shockingly bad at)! Went for a tentative jog this morning, managed to run between the station and the roundabout. V. poor, must try harder... Feel great now, though!

Take care, love Philippa xxx

Anonymous said...

Emily, I so look forward to reading your blog, I can relate to absolutely everything you are writing about, as my memories are still quite strong from my transplant.

Glad things are going well, keep up the good work.

Pauline :)

Emmie said...

Swimming? The Hydroactive? I reckon you'll be doing the Triathlon next? ;o) Still trying to get my head round you being so active - can't imagine how strange it must be for you! MWAH xxxxxxxx

Unknown said...

Another fab update Emily, really fascinating! I had so many similar moments during my tussle with ICU, especially with wanting to drink gallons of water (oh how I thirsted for the water jug on a nearby table!), and with the speaking valve (I thought I'd never be able to speak again, and was so amazed that I could, I went through the whole alphabet, feeling astonished!).

Keep up the good work, Gavin

Anonymous said...

you poor pet - those panic attacks must have been more than horrific, especially when lying down and being helpless anyway. They are frightening at the best of times but as you know all too well, they are harmless. I think we get them especially when we are physically weak; it all gets too much for the poor ol' bod at times. Don't worry about your diaphram, that will get back to normal, as will everything else. You already have regained 50% after such a short time so just keep on enjoying all those wonderful experiences (well, I could pass on the swimming, being a complete wimp who can't even swim).

Great to hear you are so well.

Anonymous said...

Brilliant news on your progress!
I didn't have a panic attack until 4 months after my liver transplant. I'd never had one before and it came from absolutely no-where while I was pushing Christian back from the shops in his pram. I got them quite a bit for a while but they went away over time which was a huge relief. I know what you mean about being angry about getting them but I think it's something that goes with the enormity of such a huge operation and all that goes with it.
Keep up the good work,
Audrey xx

Anonymous said...

Looks like you are keeping yourself pretty active now.. and who can blame you... I love swimming I go once a week with my neice as Im teaching her to swim...
Paralysed diaphrgm does that mean you cant get the hicups? He he he.. Good to hear things are going well for you Em
xx Sandy xx

Anonymous said...

I just wanted to say although I dont know you every couple of weeks i check back on your blog and read it whilst gulping and with tears in my eyes. Thrilled that you are doing so well x

Anonymous said...

Hi Emily
I just watched 'watch dog' and saw the update and did a google on your name. Just wanted to express how happy I am for you.
Take Care