Thursday, 20 June 2013

Hospital visits

It's been quite an eventful two days! I've had lots of trouble with the contraception I'm using, and I ended up phoning out of hours and dashing off to the hospital at 11:00 last night (if you don't have out of hours in your country it's where you go when it's not a big emergency but you need to be checked out and the doctors are closed). They didn't want to give me anything to help because they didn't know if it messed with my PH or any of my medication. I was bleeding so much it was ridiculous. So it was a bit of a waste of time but at least it put my mind at rest a bit as she said the amount of blood I was loosing wasn't harming me because my blood pressure and heart rate would be all over the place but she wanted me to have blood tests done today. But as luck would have it, I had an appointment with my PH doctors today so I just got them to do the bloods. They weren't that helpful either with the whole bleeding and tummy pain problems. They just said to wait and see what happens.

Anyway they did kind of sort out my chest pain. A nurse from Hammersmith Hospital in London was there, which I was really happy about because I know she's really good. She was the one who suggested morphine for my chest pain when all the doctors were doing was dithering about and saying they didn't know what was causing it. When obviously the pain was the thing that was getting in the way of my life and they'd done all the tests they could do so they knew it wasn't anything major. But anyway, she said it was quite common to get chest pain with PH (why my doctor didn't think of that I don't know!). She said it could be my heart getting bigger from all the pressure and strain it's under and that could be stretching the outer layer of muscle around the heart and causing pain. Or she said it could be an inflammation in the lungs due to the pressure in the lungs. But neither are really bad, it just the PH having an effect on them, it doesn't mean it's getting worse or anything. 

They've increased my iloprost dose again but they don't actually do the medication in a big enough dose so I have to put my new dose and my lower old dose together. So I have to nebulise twice every two and a half hours now, which is a pain but it's worth a try. 

I completely failed my walk test. I hardly did 100yards and I felt so out of breath and the nurses had a panic because my heart rate was so high. But I felt fine after a lie down. Hopefully my breathing and stuff might get better on the higher dose of iloprost. 

I had a pacing check too and they said there plenty of battery left but it's quite difficult to say how fast it'll run out because the amount my heart needs it varies quite a lot. But it sounds like it'll be at least a year so hopefully I can get it done in the summer holiday so I don't miss any uni. 

I'm feeling so tired tonight and my chest is really bad from lack of sleep and that walk test, which my chest was really not a fan of at all. Think it's time for me to get some sleep. I'm off to yet another hospital appointment tomorrow just to check my hearing then I'm going to see my dad so it should be a nice evening. The hearing test isn't till 4 so I can have a nice long lie in.
Night all.

Thanks for reading 

No comments:

Post a Comment


Template by