Friday, June 27, 2014

53% again... yay

Lung function was stable yesterday at 53%... same as last time (although used a different machine). So that's good!! Weight down a bit - need to eat more I guess, and blood pressure meds have been increased. I also did 6 min walk test (in boots... not best idea ever, shins sore today!). At then end of test SATS were 85% (but went up again quickly) and HR 160. The last time I did the test was 11 months ago, when SATS were 90% afterwards and HR was 145. At that time lung func was also 69% still. Dr is happy with the stable result, he thinks that the photopheresis worked. Curious to see what it will be like next month.

In other news, I got a new pair of glasses, been working hard, been bad at gymming, and very glad it's weekend! Below is also ladybird I was on Sunday.... some people say they're good luck... I'm not superstitious, but it was cute anyway. On our way out now to supper at Dopio Zero with sis and Pierre. It's the weeeeekend baby!!!!

Thursday, June 19, 2014


I've been a very lucky lady this week, as yesterday I had an awesome delivery at work from Chris! Tulips (which mean "real love" apparently), a succulent in a glass jar, chocolates and a card! Was very surprised and it made my week! The succulent is now on my desk at work as that's where I spend most of my waking hours!

On a different note, I've been to gym 3 times in the last week which is pretty good!!! I try to do 10 mins of walking along with the weight training but REALLY don't like doing cardio anymore. Makes me feel short of breath. I also need to start thinking more seriously about whether I'll be taking part in Nationals in October, and if so, what items I'll be participating in. In a week's time I'll be going for lung functions again so maybe that will shed some light on the matter, although I know there won't be any drastic change. But hoping to do a 6 min walk test to compare to last year's one that was done just before the Games.

What else..... work's been good and productive. Luckily we're at the more quiet time of the month now. Tonight I'm going out for pizza to celebrate a university friend's 30th birthday. Don't have much planned for the weekend yet... on Sat morning I have a Transplant Sports meeting and on Sunday I'll be going for bloods and visiting some peeps in hosp. And it looks like it's going to be pretty cold so will definitely watch some TV in front of the heater!!!

Sunday, June 15, 2014

Father's Day

HAPPY FATHER'S DAY TO MY DAD!!!! My dad is amazing... he loves his children SOOO much. I really couldn't have asked for a better dad. As far as CF goes I hit the jackpot with my dad... he did so much for me... dealing with the Provincial hosp  in PE (DIRTY yucky place) to get my meds, fighting with medical aid (before it became my battle...), playing nurse and doing my IV's at home for me (waking up early, coming home during lunch-time, and then again at night). Taking me up to JHB to see the transplant Doc, taking a job in JHB and moving here on his own  for when I get the call... and even recently helping to take me to Pretoria for my photopheresis. I've witnessed CF dad's who are in denial about their children's disease or who are not involved... and I really have been one lucky girl.And all of this while still being a great husband and example to me and my sister of what a husband should be AND being an academic freak professor who keeps on studying!!!!.He has also been great in accepting Chris and Pierre as his sons, and has forgiven me for all the tattoos :-p


Monday, June 9, 2014

Cape Town weekend

The weekend in CT was AWESOME. Had lots of fun and connected with friends I've had for 25 years plus!! It was just great. Unfortunately also tiring and only landed back at 11pm last night! Felt sooooooo tired today, but hopefully I sleep well tonight and feel more rested tomorrow.

At the bottom is a stunning bowl my sister gave me. Very appropriate!!!

Sunday, June 1, 2014


The weekend was very nice!!! Yesterday was just domestic stuff basically... gardening, shopping with sister, cooking... Today we went to a very cool buffet place called Katy's Palace Bar. Had great food and nice live music vibes. Some pics below....

This week is month-end at work... so wish me luck!