Operation Get Better... (Sort of)

You see with a blog you get to pick and choose what it is you share, sometimes you share everything and sometimes very little. The past month I haven't been sharing that much with you guys and the sole reasons are that I don't particularly like to moan about it too much on here because I have written a fair few blogposts in the past month that were just pure full on moans which honestly made me feel a bit better to write but probably wouldn't have made the best reading and therefore didn't get published. 

The past month I have quite simply felt like crap and not just normal PH crap, full on hide myself under the duvet, don't get out of anything but PJ's for near on two weeks, no make-up, no going outside kind of crap. I've basically been trying to hide away from the world for the past month and it does help, I know there will be people who say "aww no you need to get out, see people, it'll make you feel better" I tried that before Christmas, during Christmas and even a little bit after Christmas it did not help me it made me feel worse.

Basically a bunch of different things seemed to just happen all at the same time to me and they honestly just exhaust you, it's hard to try and describe to some-one the complete draining of energy that I have experienced unless you've gone through something similar. It may seem like you're being a complete lazy bum but honestly it just couldn't be any further from the truth. I'm having severe flushing in the face, this is actually a side affect to one of my medications but this flushing feels different, I wake up in the night sometimes feeling like I cannot breathe, I'll have a heart rate in the 120's/30's and my O2 sats will be down in the 70's, in addition I also wake up feeling like my head is going to explode coupled with massive headaches verging on migraines, constant nosebleeds and nausea for most of the morning. I can also only get off of my oxygen for about 1 hour before my chest and back start feeling it. 

I went to Hammersmith today though and they have decided that they don't think this is due to co2 retention which I'm fairly pleased about because apparently my condition means that shouldn't really happen because the flow in my heart is the other way round or something, they kind of lost me when they were talking about it I was just happy they didn't think it was. They have decided they want me to go on a week ECG machine as the 2 day one wasn't conclusive enough for them which is easy enough to do. They have also decided to take the risk and start upping my Flolan again. Last year it was decided to stop upping my Flolan anymore because it was starting to affect the heart failure I'm currently in, Flolan is a double edged sword it can make you better and it does work miracles for some but it can also cause heart failure so it's definitely a balancing act and at the moment the way I'm feeling we are taking the risk and upping it again until a point where I start to feel the side affects of it, if after two weeks of upping the Flolan I don't feel any side affects apparently I need to get hold of them.

I'm really hoping it works though I'm a bit fed up feeling like rubbish. 

I also had a exercise test today, an echo and lung function. The bike test went okay, Luke (one of my consultants) said that I managed to reach the same resistance as last time which is really great it means the strength in my legs hasn't declined any but the oxygen consumption was a lot less which isn't great but not unexpected. They couldn't tell me more as they have to do some comparative studies but that was the initial impression. We couldn't get any arterial bloods which was a bit annoying especially as they had already stabbed me with the needle the problem is they have to be taken literally seconds after you stop cycling and much longer and they are just useless and he just couldn't get them first time unfortunately. 

I'm hoping though that this plan of action will get me fighting fit, or you know as fighting fit as I can be for me lol. 

Hope you have all been well in Blogland?     

As always, thank-you for reading guys and chat soon


  1. I'm completely the same when I feel like writing a sad or I guess un-positive to read post. But honestly who cares because it's your blog and you can write whatever you please. I completely understand about people telling me to get out more and whatever but there are a lot of days where lying in bed can do much more of a world of good. Hope you keep well, wish you all the luck that your new heart comes soon,

    Gina x


  2. I think exactly the same Gina, it's hard though to know when it is okay to post a quite negative post or not, I feel I get the balance right though because I like to re-read some post the day after just to get a clearer perspective on them and if I think "Oh wait maybe that's a bit too much to be sharing" I won't post it.

    Thank-you!!! I hope you are well too :D xoxo


Thank-you for commenting <3