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:

Hospital visit

Well, I said I didn't expect them to come up with anything and they didn't. They have absolutely no idea why I am in so much pain. They just kept saying, "well, we know it's not the heart, that's good" but that doesnt help me. I'm still in pain and to be honest I didn't think it was my heart to begin with. I knew how this appointment was going to go, but I still wasn't really prepared for them to shrug their shoulders and start coming up with weird ideas. They're sending me to someone else because they reckon it could be heartburn. I've never had this but I'm sure for one it wouldn't continue solidly for 3 weeks and secondly be a 9 on the pain scale.

It is very frustrating not knowing what it is. I'm used to it, but that never really makes it easier to deal with, just easier to put out of your mind when you want to.

I'm really not keen on staying on morphine for a long time either, because I'm sure that's not good for you, but I don't want to be in pain either. It doesn't really get rid of the pain but it takes the edge off and stops you getting restless and unable to find a comfortable position. It's a highly addictive class A drug, which sort of scares me a little. But my doctors don't seem too worried about it. I know I'm not addicted because I often forget to take my next dose and only remember when the pain starts getting really bad.  But it's still a bit scary. I hate the idea of being dependant on something. Even though I'm practically dependant on all my drugs, it's just not a mental dependancy.

So I'm going to be in pain for a while. Good job my uni is done for this year. Except for two assignments I missed due to illness earlier in the year, but they're not due for a while I think. They're both essay type things, so I can whip them out quickly compared having to give in a story, which takes a bit more careful planning. That sounds a bit backwards but I'm a bit backwards myself.

Just got to hope the pain eases a bit in the next couple of weeks.

Thanks for reading!

My sexy oxygen tubes and one poorly chest :(

Thursday, 30 May 2013

Preparing for hospital appointments

So, I have an emergency appointment tomorrow at the Bristol Heart Institute, to see my doctor about my chest pain. Which is pretty painful, if I'm honest. I've rated it a 9 out of 10, second only to a pulmonary embolism I had 4 years ago which was without a doubt the most painful thing I've ever experienced. I've had this pain for 2 weeks now, though it has not always been at a 9. The first time I had this pain, back in January, I rushed off to hospital, stayed over a week, caught a sickness bug and was still none the wiser on what the pain was. So this time I'm just going calmly to my doctor and see what he thinks.

I'm currently packing a little bag in case I end up staying over night. I don't think I'll have to stay in, but in case they find something majorly wrong, I'd like to have some entertainment and earplugs with me because hospitals are extremely boring and very noisey. I don't particularly want to be stuck there without any home comforts. 

So this is a small list of things I'm going to bring with me. These are essentials and I'd pack a lot more if I knew I was staying in. I'll probably do a proper "What I take to hospital" post next time I'm admitted, which probably won't be too long to wait.

So here's the list:
Drugs (which are not the kind of things hospital stock up with)
Leggings (nice and comfy for lying in bed, and to avoid contact with those horrible stiff, scratchy sheets they have)
A change of clothes
Phone and iPad charger
iPod (yes I am completely in love with Apple)
Paracetamol (naughty, but they act like it's a class A substance in hospitals, you ask a nurse for some and it never turns up!)
Toothbrush and toothpaste
Ear plugs
Sleep mask (because hospitals don't know that light switches go the other way, and that curtains probably should get fixed if all the hooks are broken)
Note book and pen
Spare headphones
Dry shampoo!

That's pretty much all I need to survive one night in hospital. That and food! Because I cannot stand hospital food at all. I eat as little as I possibly can and make all my visitors bring gifts of food!      

Hope this was interesting :)

Have a lovely day!

Wednesday, 29 May 2013


Well, I've decided to start a blog. To be honest, I'm not sure why, other than, as a writer, I thought I ought to. I'm currently studying Creative Writing with Film Studies at university. "I enjoy writing" I thought to myself, "so why not start a blog?" So this is me, starting a blog.

As you may have gathered by the title of this blog, I have heart disease. And as a child I was, "the girl with heart disease." A generalisation that I will probably never escape. It's not only heart disease I suffer from, but a rare heart/lung disease, (it obviously couldn't decide which organ it wanted to destroy so went for both) which is called Pulmonary Hypertension. This is quite a difficult one to get your head around (unfortunately so are all my conditions). It is, in simple terms, the narrowing and tightening of the arteries in the lungs which makes it hard for blood to get through to be oxygenated, this creates pressure in the heart which has to work harder. My heart is rather strange. It has two left sides, two holes and a missing heart valve. I also have a condition where all of my organs, apart from my lungs, only have left sides and are located in odd places. I will be referring to the lung disease pulmonary hypertension as PH and my heart disease as CHD (congenital heart disease) from now on.

I have been assessed and possibly offered a double lung and heart transplant (assuming my tissue typing, which tells us what percentage of the population I am a match for, comes back okay). But I'm hoping this will be a long way off.

I'm currently doing well on a new medication called iloprost (I will do a full drug routine post soon) which has helped me be able to walk a little though I use a wheelchair a lot of the time. I'm currently struggling with severe chest pain and I'm off to the hospital on Friday to check there's nothing wrong other than the PH straining my lungs.

So this blog is going to be my thought on all the medical stuff so if you're interested stick around.

Have a lovely day!

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