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.
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!
I've been quiet here, I haven't posted in a while and I've been quite quiet via social media as well. I'm not well, and not in the I have a cold type way. I'm really not well. I can't breathe like at all, I get out breathe walking a few feet, standing up, talking, just anything in general is making me out of breathe. I am completely and totally exhausted. I am back at square one.
So in my last post I was off to have my Bronch and Biopsy, I had it, it showed that I am definitely not in rejection not Acute or Antibody which although great news meant that my Lung Function drop had to be something else. My consultant asked us to come to clinic so she could show us some images and talk us through some things rather than talk in a ward around other patients. In clinic she got out my CT scan images and showed us the amount of scarring that is going inside of my lungs. She told us that they were unsure as to what exactly is causing my lungs to be scarring like they are what they had got it down to was that my Lungs have had a reaction to "something" their best guess for right now is the pseudomonas that I had initially after transplant that had become inactive has become active again and also something called organised pneumonia as well. Like they said to us though they still don't know that much about lungs and it could be something that they don't yet know about yet. The idea was to put my on a antibiotic that I take 3 days a week and see if that stabilised me but they essentially told me it can go 1 of 3 ways. 1. It stabilises me and stays where it is but doesn't get worse. 2. It stabilises me and starts to get a bit better but I will never get my Lung Function back to where it was. 3. I get worse and need another transplant. They were completely honest with me and told me that they really just had no idea what way it was going to go for me they couldn't even guess. My consultant did tell me she was worried though and doctors don't tell you they're worried unless they are really worried.
So since I left the hospital I have got worse. We need to give the drug time to do it's thing but then at the same time my Lung Function is still going down, they did say I'm likely to get a bit worse before it gets better but I'm just becoming a non functioning human being again. I know my lung function has been worse and so have my SATS but the point I was before my transplant was a result of years and years of decline and I had 24 years to get used to that but the point I am at now I had a year of being able to breathe and now only a few months to get used to having my ability to breathe stripped away. I am not dealing with it that well.
I am so mad at life at the moment. I don't really understand how I can have gone through as much as I did to end up exactly where I started to begin with. I'm not a horrible person, in fact I consider myself quite a nice person. I suppose I should just consider myself lucky that I got my transplant at all but selfishly I want more time I don't just want a year, I'm only 25 for heavens sake. Life seems to hand some of us so much more than other people and it's just not fair. All I've ever wanted in life is to be able to breathe and life in some sort of sick twisted game gave that to me for year and has now decided to take it back. So now I know what it's like to breathe but I may never get the ability to be able to do so back again. It sucks, life sucks, just everything sucks.
I'm back at Papworth on Thursday so we'll see what they have to say and do then I just really want to wake up one day and to be back to post transplant normal, I really don't want to have to struggle like this again.
I'm in my 20's and after waiting 3 years,
I underwent a heart and double lung transplant because I suffered from a illness called Pulmonary Hypertension.
This blog is where I documented that journey and will continue to document all the amazing highs and the lows post-transplant. I hope to continue to raise awareness for both PH and organ donation and I would love for you to continue to share this journey with me.