Updates

I've spent a day and a night in hospital but I still don't have a new pacemaker! I don't know why this always seems to happen to me. I went to a hospital appointment and my doctor managed to get me a bed so that I could have my pacemaker changed straight away as I explained that I'd been feeling extremely tired since my pacemaker has moved into back up mode. Unfortunately it didn't end up happening and said they could do it Tuesday. So I immediately said I wanted to go home but then it turned out that if I went home they would do it till Wednesday. For the sake of one day I wasn't going to spend the whole weekend in hospital not eating properly and sleeping badly because that's just going to make the whole operation experience worse. So fingers crossed it's going to happen on Wednesday! But I've been here before. They cancelled my line insertion three times before it happened. 

Today has been a bit of a strange day because the doctors and nurses kept changing their minds about whether I was having the operation or not and when it was going to be. I'm glad I have a date to work up to now and I've got a nice weekend before I have to go in. They're doing some filming in my city for the film Through The Looking Glass, a sequel to Tim Burton's Alice and Wonderland so I'll have to take a look at some of that over the weekend or early next week and I also have a Chinese takeaway planned with my Aunty and Grandparents on Sunday. I'm also enjoying Tumble, which is a Strictly Come Dancing/Dancing with The Stars style program where celebrities try gymnastics and circus skills. I love dancing and gymnastics so it was right up my street and a pretty good watch for some easy Saturday night television and it's on nice and early, which is great for me as I'm so tired! I'm going to concentrate on these nice things and deal with Wednesday when it comes! 

While I'm here, I did a guest blog post for the American Pulmonary Hypertension Association blog, which is a great blog full of loads of advice for people living with chronic illnesses and definitely worth a look! www.phagenerationhope.blogspot.co.uk

There's a PH association in most countries and it's a great place for advice and information about the disease and treatments if you're newly diagnosed. I would recommend looking at the American site aswell as I think they probably have the most to look at and even post medical conferences on their YouTube channel if you're after really in depth information.

I hope you all have nice weekends planned too. Hopefully I'll have a new pacemaker next time you hear from me! 

Photo James took of me, looking surprisingly happy to be in hospital! 

Not Another Operation!

Well you can't say my life is dull! I had a routine pacing check today and out of the blue it turns out my pacemaker is extremely low on battery. It's been working on back up mode to conserve battery, which is probably why I've been having more palpitations than usual, which I had just put down to a combination of coffee and my medication. I had a blog post half-written about how tired I'd been recently and wondering why but I think we've solved that big mystery now. I actually wrote that it was like I just couldn't get going. Well no wonder with my pacemaker giving out lower voltage impulses! 

So it looks like I'll be in hospital in the next week or two having it changed. I've not had one done in adults before so it'll be the first time under local anesthetic but seeing as I react so badly to general anesthetic I'm actually quite glad of that. It can't be as bad as having my line fitted anyway. There was no way they gave me enough anesthetic for that one and I had no sedation or anything. I'll be making sure this one goes differently. I'm going to tell them every five seconds that my anatomy is back to front after my last surgeon didn't have a clue. Meanwhile the settings have been adjusted so it drains as little of the battery as possible. 

The annoying thing is I booked a holiday four days ago! Fingers crossed I'll still be able to go. Hoping for a nice early date for the operation so I'll be all healthy and not too sore for my holiday! 

Just my luck eh? I wouldn't have needed another pacemaker if it could just have lasted until my transplant! Well at least it should sort out this chronic tiredness I'm suffering with though I think I would have prefered it to be down to a simple vitamin deficiency but a big urgent problem is more my body's style!