Wednesday, 18 April 2012

High Expectations

The goblins have gone, thank goodness. I slept soundly and as far as I can tell didn't dream at all.

The weather, if possible, is even worse today than it was yesterday. Driving rain, high winds and it is cold, it is almost back to winter again.

I treated myself yesterday to a pair of Scholl classic wooden sandals. I had several pairs of these sandals when I was in my late teens and early twenties and I wore them everywhere, with anything. They were so comfortable and I loved them. I gave them up, reluctantly, when I became pregnant as the midwife nagged me about the possibility of falling in them and never went back. While in Tesco's yesterday I heard the familiar clack-clack, turned around and there they were, denim fabric with a few sparkles on them but unmistakable. Back home I scoured the Internet and eventually found a pair in my size on Ebay, a bargain at £18 and brand new. I was even more delighted that they were a beige suede, exactly the same as my favourite pair from all those years ago. Can't wait for them to arrive. Of course there is a downside to Scholls, they are noisy. I wore them in a library with wooden floors once and sounded like a heard of elephants on the rampage. No doubt on the first occasion I wear them to a hospital appointment I'll be warned that they could be a trip risk, however, having fallen off, out off or over many types of shoes, I never once fell or tripped in my Scholls.

Today is definitely a stay indoors day, which is just as well as I haven't done this week's ironing yet. I will settle down on the settee this afternoon and watch a film while slogging away.

Andrew is much better, he is back to eating normally and has now had two uninterrupted nights sleep so is no longer so tired. He's talking of going back to school tomorrow so is obviously much recovered.

It is back to work for me tomorrow and an early start, which I don't mind too much as I get an early finish thrown into the bargain. If this week goes well then I'm going to give eight hours a go again especially as I will only be working the three days instead of four week after next, so an easy introduction. Personally I'm hoping it pours down all weekend, I'm doing Saturday and Sunday this week, as we won't be plagued with complaints about mini motorcycles if it rains.

Next week is more or less given over to hospital appointments. On Monday I'm off to Harefield for an overnight stay while they carry out all manner of lung function tests. Part of it is to reassess for transplant, the other is to try and find out why my condition suddenly worsened and landed me in hospital earlier this year. Although I am back on my feet and feeling OK, my breathing has never fully recovered after the incident despite the introduction of a new med. Sitting down I'm fine but even walking on the flat without oxygen now leaves me breathless. If I over do it, as I did last week by foolishly trying to run up the stairs, I feel as though all breath has left my body and I can't breath fast or deep enough to get any back in. It is a strange and alarming sensation to say the least.

When I was in hospital last time they did a CT scan which showed extensive scarring and pockets of deep seated infection in both lungs. The infection has cleared at last so now is the time to assess exactly how much damage has been done. I'm nervous because the results will obviously make a difference to my chances of a transplant. If the lungs are really bad or haven't changed much I will be OK, if my heart has started to become damaged then they might say no it is too risky now. On the other hand I might become an urgent case to try and get things done before the heart gets any worse. I HATE all this waiting around while other people decide, to put it bluntly, whether I will be given or denied a chance to live. I feel so out of control, knowing why decisions are made doesn't make it any better either.

Don't get me wrong, I love the way my specialists are so open with me and always explain all the possibilities and risks to me so I fully understand what I'm letting myself in for. Sometimes, such as now, I wish they'd keep more to themselves. Although I'm usually very positive I tend to err on the side of the worst possible outcome. I think I do this so I'm always prepared for bad news but it means that as a result I don't sleep much for the few days before tests or clinics. I'm quite glad I'm in work right up to the day I go in as it will keep my mind off it. On the other hand I can see Sunday being a disaster as by then I'll have barely slept and my stomach will be churning.

After two days back home I'm then down in the Brompton for my regular clinic, hence why I'm only working three days rather than four. I am expecting an increase in my meds at this appointment as I've had problems recently with pain and, of course, increased breathlessness. I'm not looking forward to that either truth be told. OK I'll feel better breathing wise but if things go the way they have previously I'll be vomiting everywhere for weeks.

Oh how I long for the says when the only major decisions I had to make were what to put in the kids lunch boxes and whether I should go for a long walk or an hour in the pool.