Friday, 31 May 2013

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:

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