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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2 comments:

  1. I have never left a comment on a blog before but I just wanted to say that I think you are a real inspiration and a wonderful person and I truly am rooting for things to get better for you xx

    ReplyDelete
  2. I have never left a comment on a blog before but I just wanted to say that I think you are a real inspiration and a wonderful person and I truly am rooting for things to get better for you xx

    ReplyDelete

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