Friday, 15 August 2014

Won the Battle, Still Trying to Win the War.

I am so happy for Andrew. He has managed to get the last item signed off for competency in his placement book. That's it, all done and dusted with one week of placement to go. Now he can register and get ready to start his new job come October.

I am, however, bloody annoyed with my Warfarin clinic.

As you know I've taken to walking out if I've been kept waiting for over an hour, which has recently happened three weeks in a row. Each time I have questioned why I've been sitting there when those coming after me have been getting their blood taken first. I've also repeatedly told them that it is dangerous for me to wait there because of the risk of infection which could see me, temporarily, taken off the transplant list. Everything has been ignored. This morning I thought I'd try again as, having been ill, I know my INR levels are likely to be all over the place again. To protect myself I wore my oxygen with a full face mask and surgical gloves. The effect was amazing, suddenly I was the priority and was whisked in and done within 10 minutes.

When I arrived home I realised why. I had a phone call from my GP to say they had received a letter from the clinic saying I hadn't turned up at any of the sessions. I explained to my GP what had happened and that they were telling porkies. He is now going to write to them and explain the situation and hopefully that will be the end of my hour long waits. As my GP pointed out, his surgery makes sure I'm seen straight away to avoid getting infections so there is no reason why the Warfarin clinic can't do the same. Watch this space.

Isn't it always the same, just when you think you are entering a period of peace and harmony something else pops up to cause you grief. It's a never ending war of attrition.

As I think I said in my last blog I appear to have finally won the battle with H@H. The pumps will be collected in September now and to be honest the sooner the better. The sooner I get H@H out of my life for good the happier I will be. I've had my phone call from BUPA and they couldn't have been more accommodating and understanding. They did forget to give me a contact number, but then I did forget to ask, but my welcome pack is on it's way so all the numbers I need should be in there. We are off to a good start.

So with shopping done and blood taken I'm planning a quiet afternoon in. The weather is changeable to say the least so sitting out in the garden is out and to be honest I'm too tired to go out this afternoon. So I'm going to spend some time with Andrew and we'll watch a good film and catch up. Because he's been working nights I've barely seen him. I'd always left for work before he arrived home and I got home after he left for his work. The only indication of his existence these last few days have been the piles of washing up and the rapidly emptying fridge. Oh and of course the never empty laundry basket. Still five more days and then it's over until he starts his induction course for East of England at the end of September.

I've got a few weeks of hospital appointments coming up over the next few weeks. The PH clinic at the Brompton next Friday and then the transplant clinic at Papworth two weeks later. Although they are routine appointments, and I've been in fairly good health recently so have nothing to fear from them, I still feel sad to be attending. When the appointments were made, way back in May, I really hoped that I'd get my second call before having to do the clinics again. After all, I reasoned, I've had one call, my chances have been improved so surely a second call can't be far away. Of course transplants are unpredictable. I've heard of people having two false alarms within weeks of each other and then nothing. I've also heard of those getting a false alarm and then the real one a week later. And then there are those who get a false alarm and never get the real one.

However that hope is now fading. Yes I know it is only three months since my false alarm, that's nothing compared to the seventeen months I'd been waiting before it, but it awoke something in me. I didn't realise just how much I wanted that elusive transplant. Now it is the first thought every morning and the last when I go to bed. I can't relax, I can't forget about it and I can't concentrate. I'd worked so hard to get myself into that 'take or leave it' frame of mind that give those waiting on the list an illusion of peaceful normality. Now that comfy place has been ripped away and try as I might I just cannot get that frame of mind back. If anything I'm far more anxious now than I was when I first went on the list. They say life is unfair, well being on the transplant list adds a whole new cruel dimension to that statement.

Still I do have as good a life as I can expect to have in my condition and I'm well aware that it is a lot better than most. I'm still on my feet, mostly, I still work, I can still make do without oxygen unless moving around a lot and my non PH fitness is still pretty good, despite me doing nothing to maintain it. I have tried a few stretches and waving a few weights around but I can never do enough to make a difference. Some of the weights I used to throw around like bean bags I can't even get off the floor.

Right, he's up. Time to do more mothering, next blog tomorrow.