29.12.16

2016 was good...

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Hello everyone!!! I hope you all had a lovely Christmas! Mine isn't quite over just yet, me and Mark didn't spend it together and therefore are having our own Christmas this weekend which I am the most excited person in the world for! I just cannot wait to give him his presents, it took me a while to get into present buying this year but once I did I really got into it so therefore I'm excited, I actually love giving presents more than I do receiving them. So that's going on this weekend. I had a lovely Christmas with my Mum and Dad, it was exactly what I wanted quiet and peaceful and just easy, we popped to visit Candice and the kids for an hour and that was fun as well because the kids were all excited. I got some lovely gifts as well, I really appreciated the clothes I got because at the moment everything I wear is about 2/3 sizes too big for me and I'm reluctant to buy new ones because I expect to put on weight after I have my transplant but getting some new ones that actually fit is nice because now I have clothes that actually fit and I feel less like a baggy hobo all the time lol. I'm still on IV's and actually will be till next Friday now I didn't realise I was on 2 weeks worth (because I'm an idiot lol) so I'm a bit disappointed because I really wanted to spend one of my christmases IV free, but it seems that is not the case, but I'm not too bad so all in all I should not complain. 

This week has been a lot of reflecting over the year for me. A lot of celebrities have died this year and admittedly it does seem like an unusual amount but everyone seems to be saying that "2016 is such a bad year" because so and so died and for me it just seems a bit silly to put a whole year down as being bad based on a celebrity who you've potentially never met and have only listened to their music or watched their movies. I'm not saying its not sad because it is but I've always viewed life as something to celebrate not mourn and I guess I just see death as a part of life, we will all die eventually and so surely if you view a year as bad based on a celebrity death every year for you is probably going to be bad for you and I think that's really sad. 

You know I got chronic rejection this year and have been given a pretty shit prognosis and I got put back on the transplant list and I still don't view this year as bad, I've had a pretty great year:- 

- I'm alive 
- I got a baby nephew 
- I went on holiday for the first time 
- I went to Wimbledon again
- I reached 18 months with my heart and lungs 
- I saw Bernice get married 
- I helped pick Gina's wedding dress
- I'm still with my amazing boyfriend 

And just so many other little things that seem little but just add up to make such a great year, little things like getting a Birthday card off of my Nephew that he wrote entirely by himself, that is something I will cherish! I mean I started this year entirely differently to the way I'm finishing it because I started thinking I was going to be doing far more than I have and I'm ending it dying again but I have still spent a wonderful year with all the people I love. It's a year I wouldn't have had if it weren't for my donor and every year is a GREAT year regardless of who dies, who becomes President or Prime Minister, what's happening politically, what celebrity passed away this week, who cheated on whoever. For every moment I am breathing that makes that moment a good one and I might be sad, exhausted, frustrated or angry in that moment but that does not make it any less significant or great. 

I usually make some kind of resolutions at the end of the year but really I can't make any this year, my main focus is staying as well as I can for my transplant, focusing on staying the positive person I am and not letting outside influences affect that, because I too easily let other things distract me from what I really should be focusing on which for the moment is my health. I plan on still living as fully as I can, while I can, and just doing as much as we can to make life fun even whilst I'm this ill. I guess my resolution is just to make sure life is fun and to keep doing what we've been doing for the past 4/5 months which is just adjusting to my new ability level while still making sure I'm living :)
    
As always, thank-you for reading and chat soon
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16.12.16

It's been a month...


I know it's been a month, a whole month since I blogged. Where have I been and what have I been doing? Well a lot of relaxing and chilling out because that is essentially my main treatment plan but for most of those 4 weeks I had a horrendous cough which was producing so much phlegm and honestly i just have never been so exhausted in all my life from the amount of coughing I have been doing, at some points you kind of question whether you should let yourself drown in your own phlegm because you just don't have the energy to shift it yourself. The past week though has been so much better, I still have a cough but it's how I would consider a normal cough that's just a bit tickly and annoying but the phlegm has gone so I'm not having to exhaust myself trying to shift all the gunk which I can't even describe to you how great it is. I don't by any means feel well but it's just a really lovely thing that means I can get more sleep and I'm in less pain. 

The past two weeks has been quite busy really for me anyway. I've been at the boyfriends and we've just been doing Christmas non stop. We decorated the flat, made a gingerbread house, went to my family Christmas meal, Christmas shopping, my birthday, spa, London, so much stuff it almost sounds like I'm not ill LOL. In between all that though I have the days where I have to "pay" for the busy days for example after London I ended up in bed all day on oxygen. Also I wouldn't even be able to do anything if it weren't for Mark pushing me around in my wheelchair. It's been a really fun two weeks though and Ive thoroughly enjoyed myself and now I've had my last clinic before Christmas I feel like I can relax a bit and enjoy the lead up to Christmas. 

Clinic went well though everything is really stable which is really reassuring but at the same time makes me worry because I'm worried that means something is bound to happen. I also worry that because I say stable people think that means I'm well if you know what I mean? Stability is great and wonderful but when I say stable I mean, I'm still very ill I'm just not getting any more ill for the moment not that I imagine anyone thinks someone with a 25% lung function is well but it really is difficult sometimes because generally no matter how ill I am I generally don't look that ill so people assume I'm alright. Stable is good though we seem to have found a nice place with my drugs and now with the disappearance of the phlegmy cough I have a bit more energy I just hope we can stay here for a little bit especially over Christmas. I'm still heavily reliant on people though especially at the end of the day I find it so exhausting getting changed so sometimes need help with that and washing my hair has become a impossibility for me now luckily my mum and Mark have become my professional hair washers. It's difficult for me having to rely on people like that but I'm so lucky I have people in my life who want to help me.   

I had a Birthday! My 26th to be exact, I don't know how I feel about birthdays anymore I had the loveliest day don't get me wrong but sometimes for me my birthday is just a bit of a reminder that I've managed to go another year not being able to do everything I would like to. I had a wonderful day though, I got thoroughly spoilt, I got some beautiful gifts, Mark took me to a spa and I got to relax in a Jacuzzi and it wasn't a horrid aggressive one that takes me ages to adjust to but was quite calm and just felt so amazing on my ribs! I got my nails done and they had these little pods in their relaxation garden and they had massive beds in and we just got to chill out, it was such a lovely afternoon. Then we had the palaver of getting my hair washed in the changing room but we managed it and made our way to a lovely evening meal with a few friends. 

I still have a few bits and bobs to do for Christmas, I'm actually so behind I need to send some presents which I should have really done like last week but I'm going to focus and get it done! LOL I hope you're all well and will not leave it so long next time :) 

As always, thank-you for reading and chat soon
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17.11.16

Yourself...


I think I'm settling into the being ill thing again. Not in a 'I'm okay with it' way but more that we kind of have a routine now and I'm getting used to that and everything feels a little more settled. The doctors keep trying to extend my clinics to 3 or 4 weeks now that I'm more stable and every-time I decline because I like the routine I have with going every 2 weeks. For me the 2 weeks is enough time away from the hospital that I don't feel like I'm there all the time but close enough that if something starts to feel weird or strange or just off I know I haven't got long till a clinic and that is something that is really reassuring for me. Also I'm spending 50% of my time at my boyfriends and 50% with my parents and it just sort of works nicely with that as well.
 
Honestly I would say the 2nd time around is proving more difficult than the first time around and I wasn't expecting that. I have always said and will continue to say I would do and will do transplant all over again without hesitation, it was the best decision I have ever made in my life, I didn't however anticipate the readjusting to ill life and how hard that would be for me. I never factored in that I would have had a "break" my body got given 11 months rest bite so it found out what a bit of normal felt like and therefore forgot what dying lungs felt like. That's okay though and it's something I'm trying to adjust to physically again but also mentally.
 
The thing I think I'm finding hardest particularly this time around is how little I'm able to do myself, I don't feel like myself a lot of the time and I'm relying heavily on people to help me with things. In particular I find washing my hair really hard work the past three times I've washed my hair Mark and my Mum have ended up having to do it for me. Now luckily I'm not someone who's ever really been bothered about that type of thing and enough people have seen my boobs in my time that having to have someone wash my hair isn't a massive big deal, it's just the fact that they're having to do it if that makes sense? It probably doesn't to you but I don't want the people I love to have to do these really simple everyday tasks for me and I know I would do exactly the same for them if they needed me to I just wish it wasn't necessary. Getting changed is getting harder and especially at the end of the day or a day where I've done a fair bit for me so people helping me get changed is becoming more of a thing. I also just feel like I'm being stripped of myself a bit. The exhaustion is just so overwhelming most days so clothing choices for me have become limited: I need easy to put on, baggy so I don't have to wear a bra and I just don't have the energy to put make-up on most days and I know these sound trivial and they are really but I like to make an effort with my appearance and not look sick, I constantly feel the need to apologise when people see me with straggly hair and no make-up. It's ridiculous but it's something that I like to do for me and at the moment it's just not happening unless I  really, really have to.

I said the other day how I wished I could go back to normal and then that made me quite sad because I realised that me being ill is my normal and in actual fact the past year has been completely abnormal for me albeit wonderful, so I should technically be wishing to go back to abnormality and isn't that strange? Whatever the case I just know I want to feel myself again or at least want to draw upon past Stacie to be able to get through this again because I'm not entirely sure how she managed it.

As always, thank-you for reading and chat soon
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14.11.16

Bernice...

Bernice and my friendship is not a tale of friends who have known each other since they were 4 years old and passed through the years with one another, through those awkward teenager years, we don't have old school stories to tell you a part from our own separate ones, in fact we've only known each other since February 2013. That's only nearly 4 years but I can quite honestly say Bernice is one of the best and truest friends I've ever had. 

In February 2013 both of us had been on the transplant list a number of months by this point and ITV were doing a campaign to try and raise awareness for organ donation called "From the Heart." Both Bernice and I were involved in the campaign, I saw Bernice's news piece and thought I'd be a bit stalkery and I found her twitter where I just said you know an encouraging (in my mind lol) "well done" on it. We started chatting and basically I guess the rest is history, we became great friends. Bernice was one of the biggest supports for me leading up to my transplant and was some one that I turned to a lot. I like to think I helped a little when she got her transplant too lol. It doesn't feel like I've only known Bernice for 4 short years but during that time she got her transplant, met her boyfriend who then became her fiancee who is now her husband!!! 


When Bernice asked me to be her Maid of Honour I knew it was a day I had to see and it was a day that I actually thought I'd get to see when everything was running smoothly, the past few months though brought that all into question I had no idea if I could make it because firstly they were meant to be getting married in 2017 and without a second transplant I'm pretty sure that was going to be a no no but then luckily Bernice and Scott decided to bring their wedding forward due to other circumstances and whatnot and when Bernice told me it was to be November 12th I was determined that was a day I could make, no matter how I felt that day I was going to see my best friend walk down the aisle and marry Scott! I definitely wasn't a traditional maid of honour because I couldn't do all the running around that I was meant to do and help with setting up and all of that stuff but just being there and being able to witness my best friend on one of the most special days of her life was amazing for me. She looked so beautiful, she picked the nicest girls to be bridesmaids and they just made everything so lovely for her when I couldn't do the things I would have loved to have done. The day was just so special. Scott was in floods of tears and at some points it didn't seem like he would stop, you probably had to be there but looking at Scott and the way he was you would never be able to deny the love he has for Bernice. The fact Bernice had always said she would never get married and was adamant about it shows that Scott had to be something amazing to change that and I'm so happy she found someone that was able to do that.  


I took part in the entire day from start to finish and I'm so impressed with my body for coping with it. I wish we could do it all over again for her because it was just such a joy to see Bernice so happy, Bernice is one of those people who deserves all the happiness the world. They say you can't pick your family but you can pick your friends, well Bernice is certainly like a sister to me so I think you can pick your family if you want to.

As always, thank-you for reading and chat soon
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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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26.9.16

Difficult time...

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I am having a really rough time at the moment. I'm not afraid to admit that I'm honestly just finding everything very difficult at the moment. I'm feeling quite bad, like really quite ill at the moment. The past week I guess I just haven't been myself at all, I don't feel right. It's mainly down to all the side affects I'm getting from my drugs I think if I didn't have these ulcers and my throat was better I'd maybe feel a bit better, but I seem to have also gained a bit of a infection over the past few days as well which is obviously adding to my feeling of general crappiness. I've at least managed to get rid of my oral thrush, which is great but with that meant I was taking a drug that was adding to my anxiety so I've started having panic attacks. 

Panic attacks are not something I'm massively used to. I'm a anxious person, yes, but I've only ever had a few panic attacks before because I usually have a good handle on my anxiety generally but over the past week I think the meds plus the fact that my throat feels like it's not getting any air down it I just feel like I'm about to die all the time. So anxiety kicks in and then panic attacks have then been happening when I've been getting just a little bit out of breathe. It's quite frustrating and is very debilitating and is restricting me massively because I just don't want to move for fear of getting out of breathe and getting that feeling that I can't breathe and it turning into a panic attack.

I wouldn't say I'm down though mentally, like I would say I'm still pretty upbeat I'm just very mentally tired at the moment and like I miss being able to walk again. It probably seems silly but I had a picture come up on my time hop the other day and it was of this walk I did last year where there was about a billion stairs that I walked up and I remember at the time I did nothing but complain the entire way up these stairs because it was so hard and my legs were just dying the whole way up, I was out of breathe but in a good way, I was sweating and it was just hard work, but I remember being really happy that I had managed it and I just so wish I could do that again.

I'm back at a point where I'm relying on people again and I know the people in my life would have it no other way but I felt like I had reached some kind of independence after my transplant, like if I couldn't get a lift somewhere it didn't matter because I could just walk there and now I can't really go anywhere without somebody being with me because I need a wheelchair now and to be honest I don't think I can personally go anywhere without someone now because I would be too afraid of something happening by myself. I feel like that's been taken away from me again. It really doesn't matter in the grand scheme of things because ultimately my health is what is the most important thing and if for now I have to be with someone whenever I'm out and about then that's the way it has to be and I'm okay with that. I just feel a bit bad for everyone else because I never want them to feel like they have to be doing these things. I'm kind of back to that "I don't want to be a burden" feeling again.  

I have my Papworth clinic on Wednesday and honestly I have never been so happy to have a clinic, I feel like a month between them has been too long and I just don't think I will let it go that long again not while I'm like I am. I'm not expecting anything in regards to lung function and in fact if I hit 25% I would be surprised, I'm hoping we can address my ulcer issues and hopefully they'll be able to tell me if I have infection or something because I've been coughing up lots of lovely green phlegm, so I'm expecting to be put on IV's. Nobody wants to see the photos on my phone right now there are quite a few gross phlegm photos because I can never cough it up when they need me to so that is how I show them LOL. I know gross and you probably didn't want to know that but that's what happens :D 

Hopefully after Wednesday I'll get a little plan together and we can make me feel a bit better and then hopefully that'll help the panic attack issue too :)

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19.9.16

Baby steps...

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I'm still not quite adjusting to this whole chronic rejection thing as much as I would like. I think that's because I don't want to be ill again so I'm rejecting the idea of it, I know people don't want to be ill but I think mentally I'm just actively rejecting the idea that I'm this poorly again like my mind just won't accept it if that makes sense. I'm literally viewing this whole process like we've just pressed pause for a little bit in the "Well" part of my life I'm just needing a few touch ups before we can press play again. I'm really trying to be positive and hope I don't have a really long wait like last time because quite honestly I'm petrified that this could last any longer than 6 months, I don't ever want to end up at a point where I'm spending more of my life in hospital than I am out of it, that has never been a point I have ever wanted to get to and I certainly made sure I didn't get to that point the first time round. The problem is I know it's different this time round and that is always going to be a possibility for me this time. 

I don't know if I ever said before but because it was both my heart and lungs that were both failing at the same time, they kind of had this nice balancing act going on which gave both me and my doctors reassurance it's what gave me the time I needed to wait for my transplant, there was always going to be warning if my organs were going to go into a downward spiral last time. That's gone this time I don't have my little safety net this time, that's scary. 

I'm a little more worried at the moment because I'm a bit ill at the moment. We've been trying to get my steroid dose down for when I get my second transplant but every time we try to bring it down the inflammation in my lungs flares up again and then my breathing goes to pot and then it takes another 4 to 5 days to get it back up to where is was because we just have to up the steroids again. It's really frustrating because I'm spending a lot of my time just going from feeling ok to then feeling like crap again and having to rebuild myself up again and readjusting back on a higher dose of steroids which makes me so edgy and basically a moody cow who finds even the littlest things annoying. Then with all this steroid dose changing I've gone and got myself a lovely case of viral ulcers and oral thrush which as you can imagine is the funnest thing ever! LOL. We've managed to get a handle on the ulcers, although some are still lingering, with just Nystatin but the oral thrush has been a persistent bugger and decided to create inflammation around my vocal chords. Also once again not sure if I've mentioned it before but I have a lazy left vocal chord or vocal chord paralysis which is a result of many years of tubes being put down my throat. So currently the inflammation in my throat is making me sound like a squeaky toy. I sound funny to start with and add in this I just sound ridiculous. It's also extremely draining for me when I talk because it's requiring a lot more energy to speak with this. I literally just want to stay in bed all day at the moment and sleep till it's gone. One of my surgeons decided to describe my normal voice as fruity the other week so I'm not sure what he'd consider it now LOL! 

They do say that once the inflammation around vocal chords is gone it should help with my breathing even if just a little bit which I'm looking forward to. At the moment everything is just baby steps you know? Getting changed is an achievement, having a bath is a achievement, doing a bit of sewing is something, getting out of the house for an hour or two is good. I'm trying to get all the little things sorted this week though because next week is super busy; I have Papworth, Bernice's hen do weekend and then I'm off to London with the boyfriend for a few days to do lots of exciting things and I am absolutely determined that I'm going to enjoy every second of all of it! So by next week my breathing will back at a okay bearable level and my throat will be sorted.... we hope... fingers crossed ;-)

I hope you're all having fun whatever you're doing :) 

As always, thank-you for reading and chat soon
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17.9.16

Cosmopolitan Influencer awards 2016...


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Hi guys!! So ths morning a blogger friend of mine messaged me to let me know that Cosmo have brought back their blogger awards by a new name "Cosmopolitan influencer awards" which I actually think soumds really good. I debated whether I should do this post because I was shortlisted for Best Lifestyle blog back in 2013 and 2014 and I got to attend two amazing parties which I enjoyed a lot. The thing is that was in the thick of waiting for my Heart and Double Lung transplant and I feel like I was reaching people a lot more then. I've also been debating whether I can be seen as a "influencer." I've come to the conclusion I can.
I'm not the biggest blogger out there and I don't take any of the offers that are offered to me simply because this blog is for me. This blog is me, when you read it you are reading me, I write this for me for my sanity really and it helps me more than people know. I don't write it for views however people do read it and with that I just hope that people leave with a better understanding of Organ Donation and what it can do. I hope I provide positivity but with the honesty and openness that I'm known for, I don't sugar coat things and will never do so. I hope that if I am influencng people I'm doing so in a positive way, I've recieved a lot of messages off of people over the 4 years in similar situatons to myself and even people who have no connection to Organ Donation or Pulmonary Hypertension whatsoever that suggest they take something away when they read my blog and that has always left a warm fuzzy feeling inside that I'm able to affect or help people in even the smalest way. I hope I influence anyway and if not I hope I at least show people that even in the most adverse situations, which I've been in a few, that life is never over and there's always somethng that come from any given situation

So my lovely lot if you want to nominate me for "Best Lifestyle Influencer" then please feel free to do so and head on over to the --> "Cosmopolitan influencer Awards 2016"

The little form is really straight forward and easy and if not thanks for reading anyway I'll be doing another blog really soon and I will chat then :) 

As always, thank-you for reading and chat soon
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12.9.16

Here we go again...

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I'm having a weird day. I found out this morning that I have been back on the Transplant waiting list since last Wednesday. So as of Wednesday 7th September I am once again considered someone pre transplant which is weird in itself because I'm also considered post transplant, a very odd situation to be in. 

I'm currently sporting loungey pyjamas and don't plan on getting out of them, I've been working my way through a tub of Marks and Spencers crispy chocolate biscuit things, I'm catching up on "Victoria" and "Poldark," and the only makeup on my face is on my eyebrows so I don't feel entirely non human at least and I would be able to answer the front door should somebody happen to knock. 

I honestly didn't think I'd feel weird when I found out that I was back on the list, I just thought it would feel like it did before but it's different this time for some reason. Last time I remember being so excited about it all but I also remember being okay if I had to wait a while because at that time I wasn't too bad so I knew I had the time unless something seriously bad happened, but that was comforting for me knowing that I had the time to wait. I don't have that comfort this time I keep being told I just don't have the time I had last time and that's extremely scary and frightening to know that and I know towards the end of my last wait we knew I didn't have much time then but in my mind I knew I couldn't have waited as long as I did for it not to happen so I was always sure I'd get there in the end. 

This time I feel like there's much more on the line and a lot more pressure for me to stay alive not just for me but I've got to keep my current donor alive if only partially, she's kept me alive for the past year and I feel like I have a duty to at least keep the part of her alive that I can and the only way I can do that is by getting new lungs and by doing that I'll be gaining the responsibility of another person, it's a lot.

I really do wish I wasn't having to do this again, I feel like it's not fair on me or my family and i know that sounds really just childish I guess, I can just imagine me as a child or teenager whinging saying how my life isn't fair and "why me? what did I do wrong?" but I'm trying not to view it that way because that gets no-one anywhere and there are people worse off than me who can't even get on the transplant list for the first time let alone a second time so those people are probably thinking I'm extremely lucky to be in the position I am in and I am very lucky that I have this opportunity. I'm just tired you know, mentally and physically, I wanted my break and I barely got one. 

The good thing this time is I'm not waiting to do anything, I know how fleeting life is and I will do as much as I can while I'm waiting and I will make the very most of my good days and do everything I physically can to enjoy everything whilst I'm waiting, be that sewing something, colouring (which I'm really enjoying at the moment lol) a day out with the family, a trip with the boyfriend or simply just watching a movie on the sofa with the people I love most. 

We'll get there again guys and this time I promise to try and make it stick. 

As always, thank-you for reading and chat soon
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2.9.16

Stability...


I can sort of say I'm stable for the first time in about 2 months my Lung Function didn't go down! My Lung Function was 31% :-O I was extremely happy! Now I know that's only 3% higher than it was 2 weeks ago and I know that technically that doesn't suggest I'm getting better but all I've wanted for weeks now is to remain stable and now I am. I personally didn't want to stabilise at such a low level but stability is literally all I want for the moment, if I manage to get anymore improvement that will be a big bonus but I won't expect it to happen. 

Clinic though went well, it was a really long day because I had a bunch of other things to do on top of my clinic appointment. I did a 6 minute walk test which I haven't done in over 18 months. I managed 137metres which is actually better than I was managing pre-transplant as I had hit 90metres then so I'm seeing that as a positive even though I do know how crap 137metres sounds. My O2 stats are actually really good and staying at 96 at the lowest it's just my heart rate that seems to get up to nearly 200bpm which doctors aren't surprised at because my body is already working overtime so when it's walking it's obviously going to be working a lot harder. Now that I seem stable and we know my oxygen levels are doing well too I can start to sort of build up my exercise again, it's never going to be amazing and I'm not going to be walking for miles of anything but I need to make sure I keep up some kind of exercise level so my muscles don't start deteriorating either. 

I had to have a "discussion" with a psychiatrist which was probably as useless as I was expecting it to be. She told me my anxiety was reasonable and to come bak if I thought it was getting worse. To be honest the woman seemed far more interested in my family feud and the fact my dad has been married 3 times and has 6 kids. See so a bit pointless. 

We then had the big discussion with my consultant and I feel like we got a lot done. The past sort of few weeks I haven't felt like everyone has been on the same page so that was one of my big aims for this appointment, to get everyone in the same place with regards to meds and just where my condition is the trajectory of it, when I'll be on the list all that type of stuff. So I feel like we got a lot accomplished. It's not like I haven't been getting amazing care it's just because of how fast my deterioration has been it's easy to get lost in the timeline of it so now I feel like everyone is in the same place and we all know where we are now and the plan is place and everything seems much calmer to me. 

Following this we had a meeting with one of the surgeons and I've met him several times before in the past and he's still lovely. This meeting was maybe more intense than my original surgeon meeting before my last transplant because unfortunately there were a lot of questions. I was told that Papworth haven't done a heart and lung transplant at all since they did mine which is 15 months ago! So the likelihood of me getting one is just so slim so it will probably be a double lung transplant which is quite risky. It's hard for them to give you number because they've literally done two of this kind of operation but they have to try and give you numbers so they kind of just pulled 75% out of the air but they're basing the numbers of actually Double lung transplants, essentially though they did say really the risks are unquantifiable and they can't really give me a accurate number, which is fine I guess. See as positive as the whole appointment was i still worry about little things, they were telling me about all these new things they might do on me to improve blood flow in the lungs like turning my blood into a an electrolyte paste and taking some of my muscle from my rib and wrapping it around the joins and all this super cool science stuff and yet the stuff I'm worried about is having a god awful massive scar across my chest! Because they can't go in through the last scar because scar tissue and they don't like to so they'll be going in under my boobs and because of the previous transplant they will likely have to go the whole way across plus all the drain scars I'm going to have again. I'm basically going to look like Frankensteins monster. Then there was the fact that they said they were going to have to put in a line in my groin arteries well that was just the cherry on the cake for me. I know that is a common thing and I have had ALOT of procedures through my groin arteries but I don't like it at all, it might seem ridiculous but I guess I fixate on the little things rather than the bigs ones because that makes things easier for me. Also I guess with the groin artery thing I nearly bled to death through one when I was 5 years old and I'd just rather not have that potentially happen again :-/ 

Overall though it was a great appointment. I got all my papers signed and once they get all the measurements for my arteries I will be back on the transplant list as of the end of next week beginning of the week after which is scary and exciting I guess. Me and Mark are off to Wales though tomorrow just to sort of getaway and we were meant to be in Europe right now so at least we'll feel like we haven't completely missed out and get a nice little break in. It's not like I'm going to forget about everything that's going on but at least it'll be a different place with pretty surroundings and there will be a hot tub and it'll be quiet and just lovely. I'm very excited for it :)     


As always, thank-you for reading and chat soon
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26.8.16

The letter...

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I received my donor family letter. I sent off my letter back in March just wanting to say thank-you and all that stuff never ever actually expecting to hear back. Then last week I get a phone-call off of Papworth telling me that they've received a letter for me which I just have not been expecting or anticipating, so it came as a bit of a surprise. 

It's absolutely amazing that they would even bother to reply and I'm beyond thrilled that they have but it's just a bit bitter sweet. When I sent my letter everything was amazing I was doing amazing I was planning my holiday to Portugal, I was doing SO much and in a way I'm happy I sent my letter when I did because at least they got to know how amazing their family member made my life. I just feel so bad now because they've sent me this amazing and wonderful letter kind of under false pretences, they think I'm doing amazing and now my body has decided to be a bit rubbish and now my lungs are failing and in the letter my donors husband says how he would love to hear from me again. There is no way on this earth I can reply to this letter, not now, what would I say? "Oh hey, yeah sorry to inform you but my body is just so rubbish it's decided it no longer wants to accommodate your wife's lungs." No I can't do that but then I'll feel horrible if I end up getting my 2nd transplant and I have to send a letter that says "well I no longer have your wife's lungs but it's okay because I've still got her heart." I imagine the idea of his wife's lungs just being discarded doesn't seem like a particularly nice prospect.  

I just feel horrible because I just wish my body could do as it's told or do what it's supposed to do. Why couldn't it just be normal and reach the 5 years it was supposed to reach? I completely understand that this situation isn't actually my fault and there's nothing me or doctors could do to stop this but I still feel responsible for it, it is my body at the end of the day and I was given someone else's organs and the best I have been able to do is ONE measly year I might be able to push it to 18 months possibly. I just feel like 5 years would have been enough time to be able to do them justice at least, you know? I know that I have had the most amazing year ever and I wouldn't trade that in for the world but I don't want to feel like I have failed this family and what they gave me.

It was an amazing letter though. I didn't expect anything but I did think if I ever did get a letter it would maybe just be a kind of like "You're welcome" kind of deal. She sounds like she was a lovely woman. I won't divulge all the details as I don't feel like it's my place too but I know her name, what kind of family she had, the job she did, things she enjoyed and a few little snippets of what she was like and that's really lovely for me to know. I hope I can get some more time out of these lungs for her  but I guess if i do end up having a double lung transplant I will always still have her heart so at least I'll still be carrying that part of her on. 
  
As always, thank-you for reading and chat soon
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25.8.16

Better Place...

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So the past few months have been really hard for me, I haven't been dealing with the situation that well or at least not what I would consider well. I suppose from other peoples perspective I've been dealing with it fairly well and I guess considering the situation and all that stuff I haven't fallen a part at least. You know I don't even think its the really big thing of potentially dying that I'm not dealing with very well it's all the annoying little things that I don't deal well with. The side affects are the things that seem to get to me. The steroids make me crazy, I am not the Stacie you all know and love when my steroids are higher I'm a bit of a depressive mess on steroids which is then exacerbated by the fact that my nails start breaking and become very frail and my forehead breaks out in about a billion spot and plus a mouth full of ulcers which has just been fab! I just don't feel like myself at all. So I've been dealing with a high dose of steroids which has been making me feel completely abnormal and not myself and then adding more and more stuff to the mix. I'm now on a steroid inhaler which isn't bad really it just makes me appear like some sort of drug addict and makes me shake a lot which is just annoying more anything and slightly amusing when you're attempting to eat you know peas or soup or you know just anything you can't physically poke lol. 

Last week my antibiotic got upped to everyday this was the one I was dreading and so they gave me anti sickness to counteract it. The anti sickness DID NOT work, like at all! It made me worse and I can honestly say Thursday and Friday of last week were two of the most horrendous days I have experienced in a good long while. I was very lucky that I was being looked after very well. My hair is also getting to me I know I complained before about it but it's awful at the moment and we all know how much I like my hair and some days it just makes me want to cry, this one I'm dealing with though and getting my hair done Tuesday and I'm very excited! 

I feel like I'm in a better place though, mentally. My steroids have started to come down and I'm feeling a bit more normal I'm the brighter happier Stacie that I prefer to be, it's much easier to remain positive when you feel like yourself. Things don't seem as impossible or as frightening when you feel a bit more normal. 

I have been feeling a bit better but whether that means my lung function is better remains to be seen, I felt a bit better before my last clinic and yet my lung function was still rubbish. I'm refusing to do my lung function at home which admittedly the hospital aren't to thrilled with but I just know that would not help me at all, any number I saw on that screen would just make me very upset and for the moment I just don't need that and thankfully the doctors do seem to understand that a little. My breathing does feel a little easier though which is nice but it could be down to many things of which I have no idea which one it could be. My anxiety being down, inflammation being down, lung function may be up, I'm just getting used to it... who knows but it's just nice not to feel like I'm struggling for every breathe. My boyfriend got me a wheelchair so when I'm at his it makes getting out and about so much easier and I don't feel like I have to worry about how far I'm potentially going to have to walk which makes me really anxious if I don't know. 

I feel like i'm getting somewhere, I mean who knows what's going to happen in a few weeks, a few months but I feel like at least I'm not drowning under a sea of what if's, maybes, negativity and death.

We WILL get there   

As always, thank-you for reading and chat soon
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21.8.16

Adjusting...

Hi guys, so I know I'm being pretty rubbish at updating you swiftly, it sort of seems like once I've updated you there's then another clinic appointment to go to and then things change again. I had Papworth on Wednesday and to be honest I wasn't expecting much from it in general, just more of a see what I blow and then see how we go and it certainly didn't end up being that at all.

So on Wednesday it was actually  fairly important appointment because I had to have an echo which normally isn't the important but they needed to the echo because they were looking to see if they could possibly do just a double lung transplant rather than a heart and double lung transplant. I personally already had some reservations about this, just as I did pre-transplant, but when we went in and saw my consultant he told us that only two double lung transplants on top of already transplanted hearts had happened... ever... in the world. Of those two 1 woman survived and the other died. The odds are a bit shit and certainly don't make me very happy about potentially having the procedure. We have to discuss these kind of options though because unfortunately I just don't have the time that I had pre-transplant, not that there was much towards the end but I literally cannot wait another 3 years for a heart and lung set so we need to have as many options as possible in place. That was a very daunting conversation for me to have with my door because when everything is simply theory you know you're just a guinea pig and as much as I know for there to be advancements within medicine people need to be, I'm just not that comfortable with it being me. So we're doing lots of discussing and talking and whatnot but I will definitely be on the transplant list again very soon because we were essentially told that even if we are able to stabilise me they aren't confident that I would stay there and if I started deteriorating again it would most likely be very fast. 

So I actually went in on Wednesday feeling quite confident that I was going to blow a higher lung function. I hadn't told anyone really but I had been feeling a bit better, not in like a massive way but  some things had been feeling a little bit easier, like brushing my teeth and getting changed whereas in the previous appointment those things had felt like I was going to die. So I thought "ooo I might actually blow something in the 30's today..."  I didn't! I was quite demoralised I only blew 28% which was only a percent lower than last time but I honestly thought it was going to be higher and just couldn't understand why it was still that. It does suggest that I might be getting stable so I'm not going to be too upset by it but it was still just a bit disappointing. 

There was a lot more than anticipated on Wednesday, my consultant threw at me 10 points of things we need to do and be doing don't ask me what all 10 of those points were because quite honestly I don't have a Scooby, I just don't remember, I just know the ones i'm doing lol. We've upped my antibiotic to everyday now [utterly "thrilled"], we've added a newly brought out anti-inflammatory drug, we've added a steroid inhaler, we added a anti sickness. Then if these don't work we'll add a antibiotic nebuliser and then potentially a plasma blood thing that they have to apply for funding for. 

Now the reason I probably haven't updated you quite as swiftly as I would have liked is because well I have just felt like utter shit for days! The antibiotic we already know doesn't agree with me doesn't agree with me even more while taking it everyday, the anti sickness doesn't agree with me and actually made things worse and therefore I have stopped that, the steroid inhaler makes me extremely shaky and gag (lovely,) I can't say I've noticed the new anti-inflammatory drug but I just hope it's doing it's job. I've stopped taking the antibiotic just for the weekend as my body just needs a rest for a day at least and Papworth seem fine with that, thankfully. I will be restarting it up tomorrow though and I am absolutely dreading it. I can't understand why I have such a bad reaction to it when I know so many people who don't, my body obviously just doesn't like me too much at the moment lol. 

So my next appointment is the 31st and I have to see a psychiatrist and surgeons and sign papers and all that lovely stuff. I hoping once I've seen the psychiatrist they'll do something about my anxiety because it's just ridiculous at the moment, I put a bra on and it felt to tight under my dress and I started to panic because I needed someone else to undo the dress because I could't reach, I thought I was going to suffocate and die. Awful!Also just generally going outside for me is hard at the moment, once I'm sort of out there it's fine but i'm a panicky mess before I leave. So hopefully that'll get sorted soon :) 

Anyway I'm sure there's more that I'm just failing to remember but i'm sure it'll be added at some point if there is. 


As always, thank-you for reading and chat soon
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10.8.16

Chronic rejection...


So I'm in chronic rejection. Actually chronically rejecting my organs, which is what you'd think the term chronic rejection would mean but actually no, not really. Chronic rejection as I have come to learn actually just means "your lungs are completely and utterly failing and we don't really have a clue why because it's not the classic rejection that people associate with rejection and we don't know enough about lungs and what they do to actually give you any definite answers just our educated guesses." To be honest I'll take a educated guess from my consultants any day over a non educated guess off a GP or whatever so at least we have something. 

I have to be honest with you all and say  we all know, and by we I mean those of us who have transplants, we all know that we're going to go into some form of rejection at some point. Most people don't know how they'll die but transplant patients we can all be pretty sure of the outcome of our lives and we all go into it knowing that. Is that comforting? Maybe, no, not really. Who can say really? It's certainly not that comforting to me right now because honestly I didn't expect to be dealing with chronic rejection at this point in my journey. I'm not naive enough to believe that I could have got 10-15-20 years out of these organs but the optimist, the hopeful within me really did think I'd get a minimum or 5 years that's honestly what I thought I get at least. Maybe I am naive to believe that but somewhere in me I couldn't believe that I lived that many years, dealing with all the stuff I had to deal with and not get the 5 years they tell you is the average. I can't be angry because an average is an average for a reason, 5 years means that a bunch of people get more than 5 years but then also equally as many don't. It's just your luck of the draw as to what you'll get. I still believe that I'll get my time. 

So where are we with everything because I haven't really said. At my last clinic appointment, I blew a all time low of 29%. That was a drop of another 13% to say I was disappointed was the understatement of the century I knew it would be lower because simple things like getting changed got harder walking literally a few feet was exhausting and I just knew. We went in and got told I'm in chronic rejection (whoop) but we also still need to give my drugs more time as well because the 29% could just be it bottoming out and they had said previously that it was likely to get worse before it got better so I'm hoping with all my being that, that's the case here. They also heard a lot of rubbing in my lungs, meaning a lot of inflammation, which could just be my organised pneumonia acting up, but we started me on a higher dose of steroids to sort that out and hopefully reduce the "bubbling" (as I've been calling it.)  The good thing as well and I know it may not sound good is that there could be other factors involved in the significant drop this time. My anxiety is at a point like I've never really felt it before and my anxiety usually presents itself through my breathing and there's no way I wasn't anxious whilst doing my lung function and then the inflammation could definitely be playing a part too. So if we reduce those, things could get easier for me. They also ordered a CT scan that day just to see how different it was and to check that there weren't other little nasties like a blood clot or something that could be affecting my lungs. It came back fine so yay. 

We then had to discuss re-transplant because unfortunately that is very much a real option for the moment. So in Papworth 9/10 people are NOT eligible for transplant at all they won't even be put forward. Luckily my consultants think I am and wouldn't mention it at all if they didn't think that were the case. I'm still a great weight (wouldn't need to lose 10kg this time lol)  all my other organs are good, I'm young, I have a lot of things in my favour. One very big no, no going for me is I need all three organs again there's no possible way to just do double lung. So Papworth have to put a "bid" in for me which the Papworth team all have to agree on, I don't know if that's by majority or out right vote but whatever the case if they were to say yes they then have to go to a national committee who then also have to agree so it's not as easy as it was the first time round. Then there's the issue of emergency lists, there still is not an emergency list for heart and double lung which honestly is ridiculous but even if there were I wouldn't be eligible to go on it, no matter how ill I got, because this would be my second transplant which I understand but is slightly sucky.   

So for the moment we are waiting and seeing that the drugs start to do their thing and we can avoid re-transplant for now but at least things are moving in that area just in case which is reassuring.

I'll be honest guys, this is a blow for me and people keep reminding me of "how well" I did initially and as great as that is I just wish that maybe I'd had a few minor blips initially that would mean I wasn't going through this now and I know that's not how it works but you ask yourself stupid things when things have gone a bit tits up. 

It's a terrifying experience and one I don't really want to be going through. One thing that can be said for dying slowly is you don't notice it really until it's right on top of you my 24 years was slowly, slowly dying hardly noticing until one day it's all there is. This time is much different you can feel your ability to be able to breathe leave you by the day, you can literally notice yourself dying and there's nothing you can do to stop it. People kept saying to me it's just a blip and I know they were trying to be kind and i know they can't feel this like I do but you know when somethings a blip and when something isn't and I've known for a while that this is not a blip this is something quite major and I'll be lucky if I can just about keep what I've got.

The past week I keep looking at all these people walking around and I don't know what's going on in their lives but all I can think is how jealous I am of their ability to just be able to breathe, I see these extremely overweight and obese people and I just ask myself "how is your body managing to do that? You have all that weight on you and yet your lungs are still able to breathe and get you up a hill and walk and here I am barely able to move a few feet, and I fought my entire life for it." It's befuddling. 

I'm still positive though, I thought maybe for once in my life I had got a break that I would have a bit of a break that would last more than a year. The thing though is I think some of us have just been dealt a hand of cards which is just a bit shit and no matter what happens we'll always just have to fight a little bit harder than everybody else and in the end it'll be a case of who can last the longest my will power or whatever's attacking my lungs. My track records pretty good though, I haven't died yet have I :) 

Unfortunately we've had to cancel our Europe trip which is really disappointing for me as it was going to be like my trip of a lifetime but we just couldn't really risk it, we don't know what the train stations abroad will be like and whether we would be able to navigate them with a wheelchair, would there be lifts? Stairs? Escalators? etc. When we went to Liverpool I basically collapsed in the tube on the way between our connecting trains and we knew then that Europe just wasn't going to be doable. It's okay though we still plan on doing it in the future if we can get me stable or if i end up having to have another transplant but for the moment we're planning little trips that I can enjoy and not become to exhausted on that will definitely be able to navigate a wheelchair so even with potential death looming at the moment I still feel like I'm planning things. It's definitely not a forgone conclusion in my mind. The reason I say that though is whenever I've heard the phrase Chronic Rejection I've automatically thought about the person "oh god well, they might be dead pretty soon..." and I know that sounds harsh but I didn't know enough about it before to really think anything else but I'm positive I can get myself stable and then fight the bugger for as long as I can to postpone the need for another transplant for as long as possible, I refuse for it to be a death sentence! 

As always, thank-you for reading and chat soon
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