I came out of hospital just over a week ago. Seems like ages ago now! Been so busy :) When I left, my lung function had improved but still isn't back to where it was this time last year (70%). When I went into hosp it was around 44% and when I came out I managed to get it up to 59%. It's scary seeing it decline year after year and I can feel the effect it's having on my body. I get so exhausted so easily now. It's also worrying to know that if my lung function drops another 10% and stays that low I won't be able to have children naturally at all. Of course there are always other options, which we may have to turn to anyway, but I want to try and keep every percent of my lungs!
Good news, I finally had my meeting with the surgeon regarding the PEG (the tube to help me gain weight by feeding me extra calories at night). Of course the appointment wasn't without it's glitches as always, but I was so glad to actually get the process started. I asked all my questions and feel confident in having it. I just need to choose which type of PEG I want now. There are a few options: if I eventually want to have a "button" then I need to have a wider tube fitted for now. The button is less obvious as it sits close to my skin, but it has a higher risk of falling out because it is only secured by water filled balloon on the inside of my stomach. The other option is a thiner tube which is less likely to fall out but it means that I won't have the option to have a button fitted in the future. So need to think this through.
Since being out of hospital, Alex and I have still been trying to find somewhere to live and I have been doing a lot of dog grooming, which I love! Been seeing friends and trying to fit in as much as I can while I'm well. Just need to make sure I don't overdo it and make myself ill again!