Wednesday, 25 April 2012

What Doesn't Kill You Makes You Stronger

I am glad to say I've survived my assessment at Harefield and come away with only four bruises, two on each arm, which is quite good for me.

I arrive on time on the Monday morning and was whisked up to the ward where I was place in a large, bright and airy room of my own with a magnificent view to the portacabins and construction site, they are having a new suite built. I didn't even have time to unpack when a nurse came in to take bloods, this done the transplant coordinator popped into to give my my itinerary for the day. She explained I'd be going through the whole transplant assessment to see if anything has changed from last time I was seen. She'd barely finished explaining when a wheelchair arrived and whisked me off for my first test. For those who have never been through this process or are waiting to be assessed this is a list of what I had done, these tests may vary from center to center or person to person depending on your condition..

Full bloods
Fasting bloods
Arterial bloods (ouch)
CT scan
Lung perfusion scan
Lung function tests
Bone density scan
Muscle mass tests
Liver and kidney ultra sound
Kidney function (basically collecting all your wee in a pot for 24 hours, yuk!)
24 hour tape
Full examination by Consultant.
Psychiatric assessment
MRSA swabs
Chest measurement

All the tests have come back with normal results except the CT scan and the lung function tests which show a marked deterioration, the drugs I am taking are slowing things down but not enough and they certainly are not stopping the progress. There will be a meeting on Thursday to review my listing and I've been told there are four possible outcomes,

Too ill for transplant
Too well for transplant (highly unlikely)
Offer transplant with more urgency, this means being offered lungs too big (these will be trimmed to my size), too small or from ex-smokers, so less than perfect but will increase my chances.
Offer transplant with only good lungs, but this will lessen my chances.

I also had a chance to discuss my post care treatment. My heart is causing a bit of a worry, mainly because my condition is so severe and some damage has been done. In a nutshell they said that because my heart has been beating against great pressure for so long when that pressure is relieved my heart is likely to go crazy and I could have a heart attack. To prevent that happening they are going to put me on a machine, the name of which I've forgotten, which is basically a heart lung machine. It will take over from my heart for a while until everything settles down and they can gradually let my heart take over again. This means a longer time for me in intensive care but they still aim to have me home in six weeks.

For the first time concern has been shown about my work, Although my work is not physically demanding they recognise that at times it can be emotionally and mentally stressful. They are worried that this stress is beginning to have an effect on my physical well being. They haven't said I can't work, in fact it is good that I still do, but I may have to think about making changes to take the pressure off.

I have been offered morphine, not just for the pain but it will ease the feeling of breathlessness and make day to day life easier. I have declined that step at the moment as I feel that is a slippery slope I'd rather not go down just yet.

Surprisingly I've been told to start exercising. I've lost a lot of muscle bulk from my upper body of late and that is not good news for transplant patients, it make recover slower and more painful if your muscles are too week to hold you properly. Gentle weight training has been advised, preferably done sitting down and with strict instruction to not over do it. I am delighted at this because weight training is something I really miss. I've been told to eat more of the stuff that is really bad for me to maintain and hopefully put on weight, Chinese take away here I come.

Overall there can be no guarantees and I know that transplant will be risky, my life expectancy could be significantly shortened and I face a lifetime of drugs, and lifestyle restrictions. I also know I could be offered transplant tomorrow, next week, next year or never. On the other hand, I'm on my last chance for drug therapy, there is nothing after this and this drug could fail me, as other have done, within days, weeks or months. I know my life expectancy is very short at the moment. I feel ill most of the time and I am very restricted on what I can do. Of course if everything goes smoothly I could emerge with a greatly improved life expectancy and quality. I might even be well enough to return to teaching, go on foreign holidays or take part in the transplant games. It should be a no brainer but it is not, it is a hard choice to make and I constantly waver between wanting it now and withdrawing consent. In the end I know I will still go for transplant because even if I only have a couple of years of perfect health it will be worth it.