Medication increase

Heya Blogand, 

Well I didn’t manage to get any photos of Hammersmith yesterday but I will tell you everything that happened and why I didn’t get any photos. 

So yesterday I managed to get up at 4am because I was told to be ready for 6am as this was when the transport was supposed to make it to my house. Now if you know me, you’ll know I hate to be late for ANYTHING. It doesn’t matter what it is I have to be on time. When I went to college I used to leave my house at 7am for a 9am lesson and the journey would only take 30 minutes. So when it’s an appointment I have this big need to be on time. So 6am came and went, and when I know I’m going to be late I get very anxious, do not ask me why it’s just the way I am. So the idiot transport man turned up at about 7:40am. He didn’t even have a good excuse for being late and he assured me we’d still be on time. Now I don’t drive but even I know that it takes longer than 1hr 20mins to get into London on a Monday morning before 9am, I actually wanted to hit the man, and I’m normally a very nice person. Then when we were on our way he had the absolute nerve to stop at a petrol station. Even my dad was getting irritated and he’s a very laid back person.

Hammersmith Hospital
So eventually we made it to Hammersmith we were 35 minutes late so not so bad considering it was Monday morning London rush hour. I didn’t have any interesting tests yesterday so even if I had taken any pictures they wouldn’t have been very interesting at all LOL. I had my weight done, Blood pressure and then we called in to talk to Rachel Davies one of the PH consultants. She’s really nice and I get on with fairly well. We had a fairly long discussion, as they go, because we had to discuss how I felt I was getting on with the Iloprost because I have been on it for about 3 months now. I told her how I didn’t think it was doing anything and couldn’t tell a difference from being on it to when I wasn’t on it. So we decided to increase the dose because not only do I not want to be on Flolan but none of my doctors want me to be on Flolan either. The risk of clotting and getting a stroke is so high in me because I have multiple ASD’s (holes in my heart) that the risk of a clot going to my brain is high, very high and Flolan is a very last resort before transplant so will only happen if I’m literally at deaths door.

So I was sent up to PIU ward because they had a spare bed. They have to monitor your blood pressure when they up the dose of most PH medication. I like PIU ward I got to Elaine (a nurse that I really get one with) and Chantelle (a PH doctor).  I really like them at Hammersmith I pretty much get on with most of them. So they increased my dose and I then my blood pressure was being monitored every hour. It’s pretty boring when you’re being monitored, especially considering I thought I was only going in for a quick appointment, if I had known they were increasing my dose I would have brought something to do like a book and my phone charger so I could have played something. Unfortunately there are no TV’s on PIU ward so it can get pretty boring. 

I got to see Dr Howard (PH consultant) and my dad and him had a long conversation about cricket which I find so boring LOL. The only other thing is they want me to go on oxygen at night but I'm really not up for that because I don't want to become too used to it. I'll probably go on it a bit more though because she did make a good argument that it gives my heart a bit of a rest so I will try but I didn't guarentee them anything.

Everything was good after 3 hours of monitoring and then I was lucky enough to get to share transport with a fellow PHer who I really got on with and we spent the whole trip home talking :-D.

At the moment I’m not feeling great on the increased dose because it’s giving me really awful headaches and my throat is hurting again, I’m really hoping it’s just because of the dose increase and all I have to do is get used to it like I did when I was put on it to begin with. It took about a month for it to settle down last time so hopefully this time it’ll be quicker.

I wish I could have taken some photos for you guys but I’m going back in 8 weeks so I promise to take some then and I’ll probably be having some more interesting tests then so it won’t just be a boring ward and waiting room LOL.

I will write again soon Blogland
Stacie xoxo

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