Thursday, 30 January 2014

Post hospital and PEG appointment

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!

Friday, 10 January 2014

What happened next...

So in my last blog, I mentioned I was about to come up to Brompton to get some home IVs. Well my lung function was down a lot- only 44%- so I had to stay in. Alex and my mum came up for New Years Eve, but it wasn't the same lol!

The plan was to start the IVs off here and then continue at home as we were moving house (would have been today), so I obviously needed to be out to help with the move. Then disaster struck again and the house fell through 2 days ago :( The current tenants are refusing to move out and want the estate agents to take them to court. However, it meant that I could continue my IVs here instead.

I hadn't improved at all after about a week and a half, so last night the docs changed my IV to a new one. I can't remember what it is called, but I know it has the word "tiger" in it, so I will call it Tiger IV :) Hopefully this one does the trick. It has a very strong nauseating side effect, so much so that they have to give you an anti-sickness that they use for patients having high dose chemo! Should all be worth it in the end though.

Alex is frantically trying to find us a place to live, there's not much on the market within our budget at the moment.

Not the greatest start to the year BUT... everything happens for a reason I suppose!

That's the depressing health stuff done... other than that... Barney and the kittens are still happy as Larry- I went home for a few hours last night and saw them, was so great. And I saw some of my friends down the pub :D I've been really lucky as I've had so many people visit me this admission! Definitely makes it easier being in here. And I've been phone pranking Alex's mum and nan haha. It's so funny! Passes the time during the day ;)