1.7.16

Square 2...



I feel like this time last year I had taken this massive leap forward of about 1000 steps lets say. I had, had my transplant, I was breathing like I don't think I'd ever been able to I was walking and exercising like I'd never before and I just felt amazing. Today? Well I've been released from hospital and I feel like I've taken about 950 steps backwards certainly not where I started but definitely not where I was. I feel like I'm back at square 2. 

So Year Two of transplant got off to an amazing start I got to go on holiday, my first ever holiday and although there were the beginning signs of some issues it didn't affect the holiday at all and it was everything I could have ever wanted it to be. Things just started to go downhill when we got back and have gradually gotten worse. I've now lost about 35% of my lung function which maybe doesn't sound too bad when you're starting off with 100%, but I wasn't, I was starting off with 81% lung function so you know do the math :-/ My current lung function is still far more than I ever had pre transplant and I am so grateful for that but it is scary to be in a position where I wasn't getting out of breathe walking or it wasn't noticeable to now having to stop again and catch my breathe and any extended length of activity makes me out of breathe again. It's a reminder I definitely didn't want this soon after my transplant. 

So since my last blog post I went to Papworth where they told me come back in a week and have a Biopsy, Bronchoscopy and CT scan. I came and I had them, I had a bit of a reaction to the sedation as they gave me more than I normally have and I don't react too well to too much anaesthetic so you know throwing up ensued and anti sickness medicine had to be implemented. We found out the results of everything and it was a bit confusing if I'm honest and just a bit ambiguous. I like to have definite answers and that's not what I got. My CT scan seemed fine there were some changes on it but nothing that worried them, the bronchoscopy revealed very little infection in my lungs and anything there was they gave a nice clear out and my biopsies didn't really show very much. There was some scar tissue and some inflammation which could be caused by a number of things. They didn't get any definite rejection signs but that could still cause the inflammation and scarring but then so could infection and possibly my acid reflux. So it was decided to air on the side of caution and and give me 3 days of Methyl Prednisone which is the initial treatment for rejection just in case which I was more than happy with. 

I got discharged this morning and now I really have to start doing some work, I've got to get back on the bike and get back to walking like I did in those initial days post-transplant. I'm hoping by doing that we can get my lung function back up a little bit and then when I have my biopsy and bronchoscopy on the 19th things will look like they have improved. I then have my PH studies on the 20th of July which will hopefully shed a little bit of light on why my lung function is dropping. 

It's certainly hard sometimes because some people believe that transplant is this massive cure and it is in some respects and for the past year it certainly has been that for me but they forget that it's still a medical condition that has to be managed and will go wrong sometimes and I'm currently having a bit of a blip, I've gone from walking intently and being able to do loads, to being breathless and a bit useless again but determination will win out and I will get back up again (fingers crossed.) I am worried and I think that's normal and okay right now but I feel like everything is being done to try and find out what is going on with me. I'm remaining positive and believe it's something that is recoverable, I just need to remind myself to stay in that positive state :) 
  
As always, thank-you for reading and chat soon
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