Sunday, 3 November 2013

Day 7 update

So I've been in hospital a week now and even though I have a cold (side effect of flu spray) I'm starting to feel better- not coughing as much. But this week has had its set backs! I was told by the docs that I might not be getting my PEG this admission now as they want me to be able to do blood sugar testing by myself before having the PEG put in. As well as have some psychology appointments to make sure I am mentally ready for the PEG (even though I have been asking for one for 2 years!!). The dietician and I are not impressed. This always seems to happen here though; they "promise" one thing, then back out at the last minute. Gets your hopes up for no reason and makes trusting the team very hard. I understand these factors are important before having one put in, but they should have said so months, or even years, ago so that I could work on them and be ready by now.

I've been working on my blood sugar monitoring. They monitor bloods to make sure the sugar levels aren't too high. Apparently though, mine are coming in too low. I've told the nurses this is probably because I'm in hosp and don't have much of an appetite in here, as I'm confined to this room and the en suite and can't use up much energy compared to if I were at home living my normal life. Somehow though, I don't think the docs are going to accept that theory tomorrow lol....

Being in here reminds me how grateful and lucky I am to be able to do home IVs. It's so difficult to sleep, eat and remain positive in here. It's not the nurses or cooking staff's fault or anything, it's just not home- and I'm very much a home bird!

Thankfully, I was able to come home for a few hours this weekend and saw my family, Al's family and my Barney bear and the kittens Ethel and Arthur. Was so nice! Picked up my spirits :)

Oh, and if anyone is interested in the numbers and figures of my sats, weight, lung function etc they aree....
Lung function last week: FEV1 59% and FVC 90%
CRP levels: beginning of last week- 90; end of last week- 52
O2 levels: 93-96%
Weight: 45kg


  1. Hi Jo,
    Really interesting to read your blog. I knew CF was a nasty condition but I didn't realise how complicated it was! Hope your back home soon. Hope to see you guys around Christmas. All the best.
    P.s..Clotted cream is the highest calorie thing I know :-)

  2. Hi Iain, glad you're enjoying it. Thank you, I hope so too :) Yes look forward to seeing you around Christmas and meeting little Joshua! Thanks for the tip. Lots of love xx