Well haven't I been a lazy thing not keeping my blog up to date. Since my last blog sooooo much has happened.
Our Wedding videographer (who has loads of national awards for his videos) has lots of contacts with a TV company/channel called Wedding TV and he asked if it would be ok to send our video to the company so that they may show it on TV......usually a 2 min slot on a program called Wedding breakfast. We said no problem and the next thing we knew, Wedding TV were on the phone asking whether we would take part in a series of 1 hour shows called Happy Ever After!!!
We said ok so Friday I went and got my hair done all ready for my TV debut on Saturday...lol
On Saturday the film crew arrived and they 1st interviewed my sister and brother-in-law about how they'd set me and hubby up. Then they interviewed hubby and me and took some arty shots of us next to the river in our back garden. They then took us out for lunch then came back to interview my mum, one of our ushers, little Richard and our close family friends Neil and Fran. It was a really long day and it pretty much wiped me out but as a thank you to all our friends and family for doing the interviews we cooked dinner for them and had a bit of a games evening. My uncle and aunt from London decided to pop down for the evening too so we had a real house full.
Sunday was a bit of a lazy day although we did pop out to get a bit of shopping. Yet again I was wheelchair bound. I just don't get it. The Septrin has made me just about as infection free as i've ever been yet I still can't breathe.
On Monday my mum and sister took me over to Canterbury and we had a great day shopping, my sister pushing her baby in her pram and my mum pushing hers in her wheelchair...lol I bought a few bits and bobs, mainly for the house but just enjoyed doing a bit of window shopping really.
Tuesday was D-Day or should that really be C-Day....CLINIC!!!
So up to the Brompton we went. Why do they keep those hospitals sooooo hot. Being wheeled in from a cool outdoors into sauna conditions is not helpful to the breathing impaired. By the time i'd got round to the reception (via the loo) I was struggling to breath. I didn't want to do a neb as I knew I was going to have to have a spirometry test so I was just trying to control it with breathing techniques. At this point my consultant walks passed and stops and chats for a while until she's happy with my breathing before heading off back on her rounds (wasn't seeing her but her Reg today).
So 1st up was dietitian. She's concerned with the reflux i'm suffering from and the amount of fluid i'm retaining on the steroids. My usual weight is pretty constant at 59-60kg however since being on steroids (5 months) I now weigh 73kg!!!! 13kg of fluid and you can see it. You can leave fingerprint marks at various places all over my body because of the fluid retention....it's so awful. She's so worried that I still need to eat properly as when I finally come off the steroids she's worried my weight will dip.
Anyway next up is physio and the dreaded spirometry. My last one 2 weeks ago had not been good FEV1 of 19% is not good but at least this time it had improved a little. 21% Not fantastic but better and my FVC was up too to 52% which is the best it's been in a long time. So some positives.
Finally the doc. She is still concerned that my airways are not responding to the steroids and wonders whether an in patient stay and some IV steroids and some theophylline would be the way to go as well as the beginnings to assess me for transplant. Oh great, i've only been out a few weeks. I manage to persuade her to let me stay out until after mothers day (as we're doing lunch for my mum this year) so she prescribed me some spiriva in the meantime (which is working really well and seem to be a lot better on it) and am going in next week for a bit of an over hall. Oh well, I guess anything that helps.
Well I gonna stop rambling on and will blog more soon (oh and i'll post the date of when we're gonna be on TV too when I find out)
Rest in Peace Aunt Marybeth
1 year ago