2.8.16

The struggle is real...

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.


As always, thank-you for reading and chat soon
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5 comments:

  1. Aw I hope it goes your way when you go back to Papworth. We have been following you for quite a while, what with our little girl having PH too and it's been lovely reading your posts and blogs since your transplant. It's such a shame things aren't going too well at the moment for you but your optimism and personality always shine! Good luck x

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  2. I'm so sorry that your condition has worsened, stay strong! I really hope that it starts to improve soon and will be thinking of you

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  3. Stacey this is horrible news. Keep your chin up though, you can do this. Please keep posting as we have missed your updates x

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  4. Sending love and hugs and good vibes <3 i can't imagine what you're going through but I'm here as an ear to listen if you need to. Email me or DM me on twitter if you wanna chat or are bored or anything <3 my email is aldavey95@gmail.com and twitter is @AmberLove146 xxx I really hope you get better again soon xxx

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  5. I am a long time reader but first time poster. I just wanted to say I was thinking of you and am hope that the antibiotics are kicking in. You are a lovely person and deserve a break!

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Thank-you for commenting <3