12.10.16

Drugs, Drugs, Drugs....

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It's been a while guys and I'm sorry for that, I didn't mean for it to be so long, I guess life takes over sometimes and also I guess I just didn't want to just be moaning at you I suppose. 

I wish I could tell you things are getting easier but they just aren't frankly. Last week I ended up back in Papworth a week earlier than we had expected, my breathing had been getting progressively worse since my last visit to Papworth the week before. We thought better to be safe than sorry and get me checked out. It's all a bit of guess work as to how I am nowadays or as to what's wrong with me on any given week. So we narrowed it down to four things; infection, heart strain, fluid on the lungs or general deterioration. I had to stay in Papworth for 4 days for them to start me on IV's and to do a few tests. We did blood gases, they were fine my CO2 is a bit low but that's because I'm breathing so fast at the moment but nothing that would worry them, we did a oxygen monitor thing overnight and nothing untoward came from that as my SATs stayed above 90 the whole night and everything else's pretty normal really considering, they even said my lungs sound amazingly clear even though I'm still bubbling and crackling. We are giving my water pills and hoping they take any fluid I might be carrying as the bubbling/crackling only seems to be happening at nighttime when I'm lying down which suggests some kind of fluid build up. Also my heart isn't making things much easier and that's because it's a transplanted heart. When you have a transplanted heart they sever a nerve that links to your brain that essentially tells your brain and body when your exercising. Now I don't have that nerve connection anymore, I'm told it gets better with time but because I've only had my heart 16 months so mine is still pretty rubbish, this means when I've been moving even when I stop my body still thinks it's still moving so I'm still trying to breath like I'm still moving so say I've gone up a flight of stairs even once I've stopped at the top my body still thinks it's going up the stairs so it's like climbing two flights of stairs really and my body is working even harder to cope with it. 

The whole process is a bit frustrating really because we're doing all this stuff to treat me and ultimately none of it is going to make me better it would be utterly delusional of me to think that, what we're essentially trying to do is just make me feel a little less awful than I did the previous week. 

All that being said though and as awful as I do feel I'm still having fun when I can which is lovely. I managed to make it to Bernice's hen do which was so much fun even though I was really poorly. I managed to participate in most things I had to forgo my massage because my breathing was just horrendous that day but I've discovered that I'm pretty good at "Card's against Humanity," I'm not entirely sure what that says about me lol but I totally won :-D. Unfortunately Mark and I had to cancel our London trip which was a massive kick in the gut for me because I feel like I'm just messing everything up, every time we plan something really fun and exciting to do my body just decides to say "Fuck you! Not only are you dying but you can't do the fun things you want to do either. Full Stop." However we are still doing little fun things which don't require too much movement on my part, so the cinema, comedian shows, going out for tea, we're seeing a singer tomorrow and just generally trying to get me out and about a little bit. We think if we're going to do a trip like our London trip we're going to have to do it last minute and not pre plan too much because pre planning seems to be our downfall really, we'll just have to decide on a day and think I'm having an okay-ish patch and just go. 

Whilst I was in hospital I saw the physio and she was really helpful and I tried out a little bit thing that you do whilst you are sat down. Basically I've lost a lot of weight and with that I've also lost a lot of muscle, my legs are very weak and they shake a lot so we're trying to work on potentially building that back up a bit whilst also maintaining my weight. So I tried this little bike thing and honestly it was really good! The reason I ended stopping was because my legs ached so much and not because of my breathing which was a really nice feeling to have, I think the last time I felt that was just after my transplant when they started me on the bike. I think the main reason it doesn't affect my breathing that much is because I'm sat down, my heart isn't having to work so hard to get the blood around me as it would if I were standing or in a more upright position. So I've got one now and will be attempting to improve my legs a bit before I get my transplant as I know me and I know I hate having the nurses doing things for me and if my legs are like jelly I won't be able to walk like I want to. 

I think that's about it though really, my life at the moment is just drugs, drugs, drugs with the odd fun bit thrown in. I'll be at Papworth again on Wednesday and hopefully these IV's will have made a dent and I'll feel a tad better, or you know even better would actually getting my transplant LOL. 

As always, thank-you for reading and chat soon
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