Wednesday, 30 July 2014


I had another blog post written for today but then I nearly killed myself and I thought I'd better blog about that instead. I'm almost tempted to just pretend this never happened. This is honest blogging here. 

I forgot to turn on my pump! 

Yes I actually did that. And it was eleven hours before I noticed. I was told at Hammersmith that I'd start to feel ill within the hour if the medication was stopped. Say I was late home, got stuck in traffic, or the pump ran out of battery while I was out. Eleven hours I had no medication going into my body. From everything I've read sudden reductions or stopping the medication can cause huge withdrawal and what they call 'rebound PH', which is when the pressures in the lungs shoot up suddenly and basically cause you to become very ill very quickly. What did I feel? Nothing. Hence why I didn't notice for so long. I turned it back on. Also nothing. You would expect the side effects I get from the drug to get worse while my body tries to deal with a bigger amount of drug going in, but nope, not me! My body just rips up all the text books. It's good obviously that I wasn't ill because it means the background medication I'm on is helping the flolan to work. But it wasn't the best way to find that out! 

I spoke to my nurse in Hammersmith and she said actually most people do it once. So I feel a bit less of an idiot now. It's actually really easily done because the pump makes no noise at all and you're supposed to keep it in a little pouch and unless I knock it on something or drop it I never look at it to check it's still going. You have to hold down a button twice until it beeps to start it and I can imagine it's easy to just not hold it down long enough (they're quite stiff so they're not accidentally pressed) and not notice that it hasn't started. I struggle with mornings so I probably wasn't thinking straight and I was in a bit of a rush to get ready for a Doctor's appointment so I probably just forgot to press the button altogether. Honestly, I could have sworn I turned it on. But obviously not.

Anyway, to make sure it doesn't happen again I've set a reminder on my phone to go off 45 mins after I wake up to remind me to check the pump is on and as a long term plan I'm going to make a replacement pouch (which I've been meaning to do for ages anyway) with a little window in. The kind of plastic window that's used in wallets for you to keep photos behind so I can see the screen on the pump and that will make it so much easier for me to notice any problems if I do end up doing it again. Which I won't! 

Meanwhile, I'm looking forward to having to sit in front of my doctors when they say, "so, you forgot to switch it on? For eleven hours?" Yes, I'm just that stupid! 

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