Tuesday, 20 November 2012

Clinic Update (taken from Facebook post)

Had a very long, very exhausting day at Papworth yesterday for clinic as I had many tests done. (including a pregnancy test!!! As I've gained so much weight and been sick etc, it was negative thankfully lol) anyway I am still adamant I want to stay at home unless there was something such as another lung collapse, then I would have had no choice but thankfully no collapse! 

Pneumonia + flu it seems, either one has led to the other so I've taken a double hit. You'd think this would be enough (along with my broken wrist) but no there is more.... I also have a cracked rib from coughing so much, ahhh lol. Really come on life, keep chucking your obstacles at me - I will keep beating them, I'm not going anywhere, lol.

Pap are liaising with my local hospice and GP so I can be cared for and ensure I can stay at home, my morphine doses have been dramatically increased so I'm high as a kite at the moment haha! But on a serious note, I'm not stupid and I know if I really need to, I will go into hospital, right now I'm still in a very poorly state, unsure whether I'm going to get better or not, I guess time will tell but I'm determined to get through it and have a great Christmas!

Oh and also, no bi-pap, tried every route, local hospital, gp, nobody can get me one :( so still without one, may end up looking into buying one! I know it could make a difference to my quality of life and I don't have that option :( so I don't know what to do, or where to go from here, I have my 6 month check up at Harefield beginning of Dec so will bring it up with them there, maybe they can help, also may be changing my care over to the Brompton hospital. 

Anyway, thanks as always for the support, it really is so overwhelming :') lots of love to all xxx

1 comment:

Bitter_Angel said...

Not sure if it is much use to you, but I needed a humdifier for breathing and could not get one as the hospital could not provide it nor could my GP. In the end, one of the nurses on the ward I visited regularly, wrote to my local nhs funding body to request they provide one. The reasoning she gave, was that if I had it, I could spend more time at home instead of in the hospital. This would in turn save the NHS money. (Think she quoted the price of a hospital stay vs the price of the machine). In the end they said they would fund it, and my respiratory nurse sorted everything else out.

It did take a while, but given the circumstances, they maybe able to speed things up for you. Just though I would comment and mention it as it might be an option for you.

Good luck with things, sending healing thoughts your way.