So it's been a week since I got back from holiday and I'm reminiscing about being away, I've had photos printed and I have all the stuff I collected whilst we were out there and I've got a scrap book that I'm super looking forward to getting done. I wanted to have a really pretty scrap book that I could record all my foreign adventures in and maybe if I go on a long holiday in the UK as well. I've officially started sewing again and I've made some super cute bunting just to start off easy and I'll make a cushion soon and all that type of stuff. I'm super excited to get into it :).
Being back though also means I now have to think of the stuff I was ignoring whilst I was away. My Lung Function still isn't where it needs to be and is gradually going down, not in a dramatic way thankfully but enough that I'm a little worried about it, I've managed to keep it stable for the past few days which is encouraging though. I think there's a number of contributing factors though like the weather when we got back definitely did not help it was very muggy and breathing in it was horrid so I think it just took some time for my lungs to get used to that, also I've not been the most active lately so I'm trying to get that back up which I've been doing quite well with the past few days. The biggest factor I think is my acid reflux which at night time I have been coughing a lot whilst lying down and there has been a lot of acid coming up my throat. So I'm trying to implement a few things to make that better like: not eating past a certain time, acid reflux friendly foods, sleeping more upright, those type of things.
Admittedly it might be none of these things causing my lung function drop, but it's helping me mentally to be a bit proactive about it because if I do nothing it'll just keep going down and I know rejection is always a factor but it's one I'd rather stick to the back of mind and I'm happy to just think it's the other things. I'm seeing Papworth on Wednesday so all of this will be discussed and I'm sure if they are worried they'll tell me and want to do something. I'm feeling positive that it's something that's easily fixed though as I don't feel ill at all just a bit more out breathe than I have been in a while. I have my PH Studies in July as well so if it is my acid reflux they can diagnose that and then we can fix it with a little operation which I always expected I would need at some point because the Flolan that I was on pre transplant commonly ruins peoples oesophagus's and I had bad acid reflux before my transplant anyway it just wasn't something we could do anything about because I couldn't be put under any anaesthetic to have any procedures and it wasn't massively affecting me at the time so there was no need to risk it :)
It's weird that whilst I was away I managed to easily ignore all my little worries and now I'm back they're kind of my main focus, I'm happy that I don't feel ill though and I've still got lots of exciting things coming up that I'm getting excited about so it's not stopping me from planning things we just meed to pin point the issue and then deal with it :)
I hope you are all well and happy wherever you are and I will make sure I keep you in the loop :)
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.