I've Been Sewing!

I actually made this a while ago but with everything that's been going on recently, I forgot to do a post about it. I mentioned that I wanted to make my own pouch for my chrono pump, which I have connected to my central line 24/7 and pumps my medication directly to my heart. Well I did finally get around to doing that and this is the result. 

I used an old plastic pencil case for the little window in the front. I came up with this idea after I forgot to switch my pump on one day. The pump is silent and once slipped into the pouch that comes with it, it's impossible to tell if it's working. So I thought a window would be really handy as I would be able to notice any problems straight away. I prefer to hand sew so the whole thing is handsewn. It's lined with the same blue flamingo fabric, which I bought online and is a thick upholstery fabric so it protects the pump quite well. 

I put in a pocket, the perfect size to slip my phone in but it turns out my phone interferes with the pump quite badly, causing it to shut down and meaning I have to rush home and make a new batch of medicine as the only way to get it working is to take out the battery and put it back in, which makes the pump reset and you can't carry on with the same infusion. So if you have the chrono PCA pump, keep your phone away from it! 

Just a quick post as I wanted to show you my hard work and if you get a glimpse of the pouch in my photos you'll know what it is now! 

Woops!

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! 

Drug routine

So, I've decided to do my drug routine, which is actually quite small for someone with heart and lung disease, but is quite complicated as well.

Firstly is 'Iloprost', which comes as a liquid that you put into a nebuliser, which turns it in to a kind of thin mist that you breathe in and goes straight into your lungs. This is the most important of my meds and is the one that I noticed the biggest difference with when I started taking it.
The bad thing about this is that it takes about 10 minutes to take and has to be taken every 2 and a half hours, which is a bit annoying, especially when you have a busy day. But it works so I can't complain. What it actually does is dilate the vessels in the lungs so more blood and oxygen can get around.
Here's a picture of all the stuff laid out ready to make up a dose:

The white basket is what you put all the things into clean them (I actually use a baby bottle steriliser now instead), the vials of Iloprost are in the blue box, the tray with the red clip on fits on to the main system, which is the blue contraption in the middle, and then the illoprost goes in there and the little lid (behind the tray) clips on top. Then on goes the mouthpiece (far right) and I'm good to go!

The only side effects I get is flushing and feeling hot, and a little chest pain, both of which go away quite quickly after each dose and are getting better the longer I've been on it. 

The next drug is 'Ambrisentan', which is meant to work with iloprost really well. It pretty much does the same thing. I just take it once a day at bed time. The only side effect I get is occasional jaw ache, which is odd but it's a very small side effect in the great scheme of things.

Next is 'Warfarin', which you might have heard of. The previous drugs are created specially for PH so they're quite unknown and expensive. Warfarin thins my blood to stop any clots forming in my heart or lungs as I had one of these a few years ago. I don't get any side effects unless I take it at the same time as ambrisentan. For some reason I get really hot if I do that. But just an hour apart and it's fine. 

Lastly, as I mentioned in the last post, I'm taking morphine for pain. Specifically 'Oramorph', which is a liquid solution like cough mixture (but tastes worse). If I take a bit too much I feel really calm and weird but otherwise it's fine. If I'm really tired it tends to make me even more drowsy but it doesn't effect me that much. Not compared to a lot of people I know who feel terrible on it. So I'm pretty lucky on this one, because I have to take it quite a lot at the moment for my chest pain. 

Here is my completely stuffed medicine drawer, which doesn't include the iloprost as that comes in really big boxes, and has some of my needles in as I have a home testing kit to check how thin or thick my blood is: