Sorry for not blogging sooner but life has been utter madness for the last few weeks.
Between cooking cakes and making party food for my sisters party, granddads party, as well as for my hubby's party, clearing out the house (going to do a boot fair this weekend) in readiness for our extension build, which hopefully should start next month, getting poorly and getting more antibiotics to try to stabilise AND a visit to the Brompton to discuss the possibility of transplant, things just haven't stopped.
I made the most enormous chocolate fudge cake for my hubbys and since then have been taking orders from friends and family to make cakes for them...lol My mum has even entered me into the local horticultural show next month so i'm doing lots of practice runs, much to hubby's delight.
Am holding a party for my brothers 30th this weekend and as well as cake, am making bannoffee pie as it's his favorite. The things you do for families eh...lol
Anyway, went to the Brompton on Tuesday and my lung function had dropped a little bit (25% from 27%) but i've also dropped my steroids from 12.5mg to 5mg so they were happy. I've put on a little more weight but they think that i'd put on a lot more and have begun to loose it from the steroid reduction. They confirmed i'm probably suffering from sleep apnoea, but that should ease as I loose the weight.....fingers crossed. They also think that by staying and maintaining on the 5mg of steroids the breathlessness should ease and I should hopefully stabilise.
We discussed the options of transplant and they think now is the time to go for assessment. So as the Brompton does assessment in house, i'm waiting for my cf nurse Mille to phone me with a date to go up for the 1st part of the assessment which is a 2 hour chat and "presentation" from her. Then it's onto the 4 day assessment of tests, hopefully in the next 6-8 weeks.
With all this going on i've also got my in-laws coming to stay for a weekend next month and the start of our extension happening, so it's still all go.
Anyway, I will leave it there as i've gotta go and take a couple of nebs before bed....the joys of cf...lol
Night all xxx
Rest in Peace Aunt Marybeth
1 year ago