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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