29.10.16

"Peeking..."

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So things are... okay. I absolutely refuse to say we're turning a corner because I'm not sure we'll ever turn a corner until I get my transplant but we're peeking I think, we're peeking around the corner. Last week was awful I felt horrendous and the past week has been exhausting for me. Shifting all this stuff in my lungs has been so difficult, I've never been good at shifting stuff I get so tired bringing it up I usually find I can't get it up enough to actually spit it out and doctors get frustrated with me because they obviously need to see it and test it, so this week I've been managing it at least. I sound so disgusting and I've felt like I've been drowning at some points this week but thankfully I think we're getting somewhere. I'm coughing up a lot less stuff and the colour is changing and is a lot less green. I'm back onto just paracetamol and the pain is pretty much gone which suggests inflammation is down as well as the return or partial return of my voice. 

I'm never going to say we're moving forward or "I'm getting better" but I feel like I have my stability back even with the Pleurisy and the infection I've still been managing to do my 20 minutes on my pedals which I'm actually super proud of myself for doing. I think I missed one day and that was because i felt terrible but other than that I've been really making sure I've been doing the pedals because I know how important it is that I keep it up for when I get my transplant. 

Admittedly I am a little worried because whenever I seem to take a step forward I end up catching something or my body decides to do something and we take two steps back it's just kind of like we never sort of get anywhere it's like we're constantly playing catch-up and that's a bit frightening for me I guess because there's only so many times you can take a step back really before there's no where else to go. I just hope for the moment we can keep this level of stable-ness and I can stay well enough for Bernice's wedding which is my current "goal," it's just unfortunate that what I've found at least with this is that I can be ok one day and then within a few hours just be completely not okay, so we will see anyway. 

I'm going to be positive Stacie though and say it will last though and hopefully on Wednesday at clinic they will say all is hunky dory and I can try and actually get some stuff done! If you can actually believe it it's nearly November and I haven't actually started Christmas shopping yet and it's stressing me out beyond belief! LOL  

As always, thank-you for reading and chat soon
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22.10.16

Exhaustion

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Hello lovely people. So I finally finished my IV's and everything went smoothly with them, my line lasted the entire 2 weeks which if you know my history with long lines they generally only last as long as a cannula so you can understand why I'm so happy with that. Towards the end of the two weeks though I started to develop a cough which was producing a lot of phlegm which is quite unusual for me because I can't normally cough up my phlegm at all and that's exactly what I was doing, it was a  lovely shade of dark green which indicates infection, so I was a little worried especially as I was getting mild temperatures as well. The morning of my clinic appointment I woke up around 4am and went for the loo and when I went back to bed I felt like I'd pulled something in my back, I assumed I'd maybe coughed too hard or something and thought very little of it, over the next few hours it got worse and worse and started to spread to the other side of my back. By the time it was time to wake up I was in agony I managed to get my legging on but by this point I was crying my eyes out from the pain and telling Mark there was no way I could physically get changed. I coughed and then I was in even more tears and had no idea how I was going to get through the day not being able to cough. Mark managed to calm me down and get me changed but I've honestly never felt pain like it, it was awful! Now I'm good with pain I didn't cry one when I had my transplant because it just didn't hurt so when I say something is painful, it is painful! 

We finally managed to make our way to Papworth where we met up with my parents and they both thought I looked like death. I saw the nurse and told her there was absolutely no way I could do my lung function that day because I physically couldn't breathe in enough to be able to do the test. Luckily they said it was fine because at the moment my lung function really doesn't mean too much unless it dramatically falls or dramatically increases. I went for my x-ray and nearly collapsed when I was asked to stand because the pain was that intense and when I got back to clinic they put me in one of their back rooms because I was just so out of it and ill. I finally gave in and my parents and Mark ask for pain meds for me because I just couldn't handle it anymore. I had to have a echo and whatever little difference the pain meds had made the echo eradicated so when I went in to see my consultant they gave me more and basically I was a dopey weirdo from then on lol. I don't really know too much of what was said in the room but I do now. So basically I have pleurisy which has been caused by the infection in my lungs. The IV's I was on have shifted all the gunk in my lungs which in turned and inflamed my lungs and now they're rubbing together which is what is causing the pain, it's known for being very painful, so over the next week I have to try and shift as much of the stuff in my lungs as I can and hopefully that means my pleurisy should ease. Also another side affect of all this inflammation has meant I have completely lost my voice entirely. it's very quiet for everyone in my life right now LOL. 

I'm okay though. I'm exhausted though all this coughing is just so draining. I know what tired is, I've often complained when I'm tired but what I'm currently going through is complete and utter exhaustion I forgot what it was like. Luckily the doctor has put me on bed rest which right now is just completely what I need but I've also promised my consultant to do two 20 minutes on my pedals that I do whilst I'm sat down. Which I've been managing and I'm so proud of myself. I've also been told to use oxygen when I've done anything physically demanding, so after I've climbed the stairs or had a bath or after my pedals which seems to help get my breathing back to a normal rate faster and I really appreciate it, it feels like it's not so hard if you know what I mean. 

I feel so lucky though that I've had Mark and my Parents though, they are my absolute rocks at the moment. I know I always say how I feel like it's something I should be doing by myself and I know I could do it by myself if I had to but I'm so grateful to have them at the moment. Everything is just so hard right now and they make things so much easier for me. I've spent the past 3 weeks in Norwich with Mark and he got up early every day and did my IV's with me, made sure everything was ready for me, ran me baths and just did so much for me. My parents are amazing as well, they've brought me this annoying bell for me to ring whilst I have no voice to get hold of them when I need them and what parent would give their child a service bell?! Crazy people. I do absolutely appreciate everything they all do for me though because at the moment things aren't easy and it's nice that have them lean on. I just hope it's not for too long because I do feel bad that I'm having to rely on people so much. 
 
As always, thank-you for reading and chat soon
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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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