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

1 comment:

  1. You're a true inspiration Stacie, try and keep a positive mental attitude, I can't imagine what you're facing right now but your courage and strength is beyond admirable. We're all routing for you and hope that everything is sorted as quickly as possible for you
    Lots of love Darren x


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