Sunday, 21 September 2014

Officially Autumn

Yes it is that time of year again, my favourite.

For me autumn signals cool crisp mornings, the smell of bonfires, kicking through leaves on a long walk, picking blackberries and gathering conkers. Autumn encompasses everything that makes me smile.

Unfortunately this year autumn has coincided with my twenty first month of waiting on the transplant list. It is now looking more likely that I will not get my new lungs by Christmas and more likely that I'll hit the two year marker. I know, I know, there are people out there who have been waiting longer and there are those who will never get their call but, and call me selfish, I'm finding it hard to be sympathetic with other people right here, right now.

Autumn means watching the squirrels
 burying their nuts in the lawn.
My friend Stacie, for instance, has just past the two years, five months marker and has written a wonderful blog about it called 'Acceptance'. Please follow the link on the right hand side bar to read it. I won't spoil it for you by repeating anything here except that she likens waiting on the list to hoping to win the lottery. It is a very good analogy and I want to explore it just a bit further in my blog.

There are three main types of people who tend to enter the lottery. Most are in it for greed, some are in it for fun and then there are the small minority who are desperate. It is this last group that are most like a person on the waiting list. These people have found themselves in a situation, whether through their own fault or someone else's, and the only way they can see forward is winning to lottery and getting enough money to solve their problems. Those on the transplant list know only a new organ can solve their problems. Given the odds, the chances of this happening are very slim and in all honesty slightly better with the lottery. With the lottery all you have to do is pay your two pounds and hope. It doesn't matter where you got your pound, how old it is, which country it represents, it has just as much chance as everyone else's.

It isn't that simple with transplant. Your tissue type, blood group, antibodies will not be the same as everyone else. You have to wait for a person with your specific qualities to die and be good enough to donate. Much more complicated than the lottery.

Also with the lottery you win, you walk away with the money and you spend it how you wish. Not so with a transplant. You are signing up to a very restrictive life full of don't do this or that, doctors and hospitals. Some people have told me that the frustration of not being able to just 'get on with it' is greater than the frustration of waiting. I'm not sure if that is true. Yes you do have a lot of hospital visits but then I do now, at least afterwards I could get out and do things in between those visits, unlike now.

So what happens if you do win? The worst people who win the lottery, at least in my eyes, are the ones who say it won't change them. What a waste! If winning the lottery isn't going to change how you live why enter it in the first place? If I every heard an organ recipient say something like that I'd go mental. I'd be the best sort of lottery winner. I'd spend it. Yes I'd give a load to charity, and of course help out my family and friends but mostly I'd have a life long party. Why stick it in the bank? You can't spend it when you are dead.

The worst sort of organ recipient is the ungrateful one. I was in Papworth a few months ago and found myself sitting opposite a man with a face like a bulldog chewing a wasp. I couldn't work out what his problem was until a nurse came out to speak to him. His rudeness was staggering. The nurse was asking him if he'd been keeping up his book. The book is something all post transplant patients get. It lists your meds and you use it to record the results of the homes tests you have to carry out, temperature, weight, etc. This man practically snarled at her that he hadn't and wasn't going to either. 'It's all a waste of time' he growled. Now obviously I was only eavesdropping and didn't know his circumstances, he may have had problems I didn't know about, but the way he spoke to the people who saved his life was appalling. He gave the impression that he wished he hadn't bothered, and that is unforgivable.

If that were me I'd be kissing that nurse's feet. I certainly wouldn't grumble about spending time making sure everything was still working properly. The earlier they spot rejection the earlier it can be treated and stopped. What is the point of having new organs if you are not prepared to look after them properly?

Sorry about that, went into rant mode.

I'm grumpy because I'm not well and have had to call in sick to work. I'm going to have to visit the doctor tomorrow but I'm pretty sure I've got a chest infection now, my cough has become productive and my ribs hurt like hell. My SATs are still at 92% though, which is weird. I shouldn't complain because if my SATs start to drop I'm in all sorts of trouble but it is weird, very weird.

So no doubt I'll be on antibiotics by this time tomorrow and feeling rather sorry for myself.

I'll keep you posted, next blog tomorrow.