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!!!!

Loved!

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!!!

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

BAIE LIEF VIR PAPPA!!!!

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!!!

Weekend

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!

The usual 2% down.

Check-up went fine, bloods all good like usual. FEV1% down by 2% AGAIN, I think this has been a consistent 2% drop per month since July last year. Now sitting on 53% FEV1%. Tomorrow last photopheresis. SO ANNOYING.

6 years 4 months

Yesterday was 6 years 4 months post tx, yay! Didn't have a great day though. Most of the days this week weren't great. It's just been a strange week anticipating next week's final photopheresis and lung function & check-up. Went to gym on Tuesday and it was pretty crappy again, bleh. So really curious what lung function will be. Not stressed about it much at least!

Not much planned for this weekend apart from lots of domestic stuff.... all 3 kitties have to get vaccinations, need to go to supermarket, butcher and fruit&veg shop, gym and supper with my folks tomorrow eve. On Sunday I need to have bloods done for Wednesday's check-up and somewhere in between get laundry done too! BUT in 2 weeks time I'm in Cape Town for my friend's party!!! So yay!!!

Have a good weekend.... or at least a productive one like me!

Weekend and gym





Not much happened in the last week. Only major thing that did happen is that I went back to gym on Monday after WEEKS off. It was unbelievably tough!!! Thought I might pass out or something. Went again on Thursday and Sat and it was a little better at least. In 10 days time I will be doing lung functions again so we will see if they are down or exactly how unfit I am!

 

This weekend has been pretty good. Apart from gym we also had a "potjiekos" as one of my university friends' house that he recently bought. It involved quite a lot of gin and tonic and was a pretty fun evening. Today I felt a bit hung-over so didn't do anything productive! Just went to visit a CF friend in hosp and went out for some cake (well I had cake!) with a friend in afternoon.

 

Not particularly looking forward to this week... but need to survive it in order to be closer to next week when I have my last photopheresis and in 3 weeks time I'm off to Cape Town for the 30th birthday of one of my closest and dearest friends Louzanne!

 

Mothers Day

We had a good Mothers Day today - had a very yummy lunch with the fam at our house! Also did some gardening ( and even got a plant from the kitties for Mothers Day via my mom!) Below is a pic of me and my sis with my mom and also pics of last night's supper out.

Busy but productive week and elections

The week was very busy work-wise, with it being month-end. Wednesday was also Election Day and a public holiday. I slept late ( till 08h30!!! late for me!!), then went to vote, which didn't take very long luckily. After that I went to work for about 2 hours, then visited a friend and in the evening we went to watch The Sound Of Music stage production. It was AWESOME. Thurs eve there was a Transplant Network meeting at the hosp, which was very nice!

This weekend has been good so far. This morning I also slept late (till 9!! Must be some kind of record!) and just did chores around the house. In the afternoon my sis and I went to lifestyle garden cenre for plant shoping and coffee and this evening we went out for Indian food. VERY yummy!!!

Enjoy the rest of your weekend!!!

CF Scholarship available to students in the USA

I have been asked to mention the below scholarship that is available to all CF's living in the USA on my blog! I have many followers from the US and many US facebook friends so thought it would be good to share this:

Going to college or university can be expensive, but for students living with cystic fibrosis (CF), a legacy scholarship can help alleviate the financial burden.

 

Today, AbbVie announced that undergraduate and graduate students living with CF can now apply for the AbbVie CF Scholarship. For nearly 25 years, AbbVie’s legacy scholarship program has supported the CF community by providing financial assistance to exceptional undergraduate and graduate students who are pursuing their dreams of higher education.

 

This year, 40 students will be awarded $2,500 each based on their outstanding academic record, extracurricular activities, and creativity. In honor of the 22nd year of the program, the 40 recipients will compete for public votes to qualify for the title of Thriving Undergraduate or Graduate Student to receive a total scholarship of $22,000 (the original $2,500 scholarship plus an additional $19,500). 

 

Applications will be accepted until Monday, June 9 and are available online now at:  www.AbbVieCFScholarship.com/apply. For more information, visit www.AbbVieCFScholarship.com  to view creative submissions of past winners and learn more about the application criteria, contest rules and upcoming deadlines surrounding the application process.

 

Previous scholarship recipient James D., an undergraduate student studying business finance, is available to share his experience living with CF and how receiving the scholarship has impacted his life.

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