Sunday, November 30, 2014

My teeny tiny little interview on Joburg Today

I'm about 2 mins 50 secs into this video. Very short! But keep on watching, the insert after that about fat not being the enemy we were taught is also something I believe in and that we try to follow at home.


Saturday, November 29, 2014

Lung func report-back

Yesterday's check-up went well. Lung func very stable... FEV1% was up 1% to 48% (first time in over 2 years that is has been UP by anything at all), FVC (lung capacity) is 91%. Bloods were great. X-ray showed nothing new, just the usual hyperinflation apparently. Weight down a bit so need to eat more. My next appointment will be the day before my 7 year lungaversary.... 21 Jan! So no more Drs for the rest of the year.

This week was completely non-eventful, and next week is month-end so also just a case of going to work and then home. Maybe gym once or twice. Meh.... Just looking forward to the 10th when I'm having my mini varsity reunion with 4 friends in Cape Town for 4 days.

ALSO heard that my PE friend Antoinette is coming from 26 Dec to 1 Jan, which will be GREAT.

So lots to look forward to in Dec once the first week of it is over!


Thursday, November 27, 2014

Check-up tomorrow (third time lucky)

So hopefully tomorrow I actually make it to my appointment without being rescheduled again, esp after being at work at 5am like last week!!!! The joys of having the best lung Dr in the country I guess :-p

Not bothered much by any results, lung func will probably be down a tad, bloods and x-ray should be fine... so whatever. Same old same old. Will report back tomorrow or so.



Sunday, November 23, 2014

Good weekend and new look for blog

Firstly, welcome to the new look.... just changed some aesthetics... thought it was a nicer look for summer and a bit neater. Let me know what you think!

On Friday eve we went to see the new Hunger Games movie.... Mockingjay Part 1. It's the second last movie in the series. I really enjoyed it as I have read the books. If you didn't read the books it might have seemed a bit slow-moving, judging by my friends' reactions! Also LOVE the theme song by Lorde, so that's already been downloaded on iTunes!!!!

Sat morning on the day of my lungaversary was the CF walk... I was a bit disappointed by the turn-out, as it seemed rather badly attended compared to previous CF walks. It could also be the early starting time, but who knows. It was still fun catching up with the people who WERE there, esp Shaun and Alet. Some pics below (last one was taken by Janice Barnard)




Last night was Andrew's dinner party (see previous post) which was AMAZING. Today I had to go for bloods, and then we had my parents and Chrislie and Pierre over for lunch (even though the rain almost ruined our plans!). The rest of the time we just chilled out.

On Friday I go for lung check-up again (touch wood that appointment won't be rescheduled for a third time!!!!!). And hopefully going for bloods this morning after a late night and too much champagne was not a bad idea :-p If bloods are great though I know what I need to going forward LOL.

Le Diner Blanc pour Noel

Last night my very good friend Andrew hosted a very classy french white Christmas dinner. We all contributed a course on the menu, and ate like kings!!!! Got home at almost 1 am which is a sign of a good party!!! Definitely have to make this a tradition!
















Friday, November 21, 2014

RIP Lily kitty :-(

Our family kitty that we got in 2002 passed away this morning :-( She was a pure-bred Chocolate Burmese cat.... I had just finished school when we got her (it was December holiday) and she caused such drama as the older cat Emma wanted to kill her... for real. We had to send Emma away for a while to give Lily time to grow up and defend herself. They eventually became "friends" after a few years, but I think it was always a love-hate relationship. Except now Emma (who is turning 16 years old in Jan) is missing her partner in crime :-(

So sad when pets pass away, they are under-rated family members :-( RIP Lily

video





It's the weekend....


Thursday, November 20, 2014

Lungaversary CF Walk!

Just a quick post to remind all Joburgers of the CF walk this weekend! It's early in the morning but will be worth it!!! It's of course on the 22nd... which is my lungaversary date.... and this Sat will be 6 years 10 months.

It's at the zoo again, which is beautiful this time of year! So make a day of it! ALSO.... there are 3 adorable lion cubs at the moment!!!! We saw them at the ODF walk and they are too cute. One of them is a white lion... gorgeous.





Sunday, November 16, 2014

Thoughts for the last 6 weeks of the year...

So 2014 has 6 weeks left..... scary!!! This time of year it feels like everything going faster and faster, and everyone is starting to look forward to their Dec holiday. Unfortunately our "December holiday" is over (we had it in Oct) so no real break to look forward to.

I do however had a little university-friends-reunion breakaway to look forward to mid December! Three of my JHB friends and one of our PE friends will all be flying to Cape Town to a friend based there in Stellenbosch  for a few days of catching up and relaxing and being nostalgic. Basically enjoying each other's company again for a few days and forgetting our "grown-up" lives (work, bonds, rejection etc....) So that promises to be AWESOME.

So my goal for the rest of the year is just to remember these 3 things:




This year hasn't been as bad as 2013 was for me (by quite a long shot), and hopefully it will also end in a similar fashion. Have a good week!

Thursday, November 13, 2014

Sad news and lots of Organ Donation awareness

If you are friends with me Facebook you would have seen that Dave passed away on Tuesday morning. Only 45 days post transplant. SO SAD for his family, friends and all the medical people involved. NOT FAIR and a bad week for transplant.

I've had a busy week... Monday I went to gym, Tuesday after work I attended a Motivational Meet-Up organised by McNabs. It was SOOOOO interesting and inspiring. The speaker was Stephanie Vermeulen, author of the book EQ (of which we received a complimentary copy!). She spoke about the energy behind emotions and mentioned some profound truths. Very glad I could attend.



After that I went straight to Power FM's studio and was part of a panel speaking about organ donation. What an experience! I was joined by Kelly Du Plessis from Rare Diseases SA and Mosa Mphore, kidney recipient and founder of Open Eye Foundation. We were on air for an hour, and it was very interesting! You can listen to it here if you want to. Most of the callers were supportive and I hope it's a good sign for things to come.




Today I worked half-day and attended a media launch of a new facebook app to promote organ donation in SA called #save7. You nominate 7 friends that you would "save" by becoming an organ  donor, and those 7 friends then also have the option of signing up as organ donors and nominating 7 friends in return. The launch was at SPUR in Gallo Manor, as SPUR is the sponsor of this initiative. The founder of SPUR spoke and demonstrated how the app will work, and I along with a few others did a short talk. They also showed two short recordings of Jenna Lowe who started this drive in her desperation to get lungs. Afterwards there were a few interviews and some mingling. Very cool and LOVE doing stuff like this!











Sunday, November 9, 2014

unfairness and weekend

On the 26th of Sept (Chris's birthday) one of the local CF guys, Dave, got lungs. I was sooo happy for him when he posted his selfie of facebook saying "see you on the other side". Lungs are SOOO HARD to come by in this country and when someone gets that call it's like winning the lottery. Dave has had a VERY bumpy ride, with LOTS of ups and downs. He has a great facebook group which posts updates twice a day. So after following his journey closely since transplant, the below update was posted today.... (I did ask permission to share!) So if you are religious PLEASE pray for a miracle... My heart is so sad about this.

I feel like I had the easiest recovery in the world and I cannot even imagine what he has been going through when he is awake. It is not fair :-(


The rest of my weekend has been good... was spoiled by hubby on Friday eve with flowers, fillet steak, Caramel salted ice-cream.... just amazing eve! Yesterday we had a Gauteng Transplant Sports meeting, and in the afternoon I went shopping with my sis (I managed not to spend much or buy any clothes... yay). This morning we went for an early breakfast with her and Pierre at The Whippet which I've always wanted to try, and had a braai for lunch. Also did gardening and other stuff around the house. So all in all a good weekend.




Saturday, November 8, 2014

wow!


RIP Cornel

Cornel was the oldest surviving CF transplant recipient in South Africa. She received her transplant in 2002, and I think she might have been the first double lung transplant recipient in this country too? Not 100% sure about that though. I remember when I got listed I had heard of this lady with CF who was like 5 years post transplant and it gave me hope.  Over the last 2 years we started chatting on facebook and texting each other. I never got to see her because she lived in Secuda.

However last Sunday she told me she is in Milpark and I went to visit and meet her for the first time. We had a really good time chatting. She was struggling quite a lot to breathe though and it was quite scary to see. She also had a tiredness about her that I can relate to from life pre-transplant but almost on a different level... if that makes sense. But she was so grateful for how awesome her husband is and that she married the best guy in the world, and all the awesome friends and family she has that keeps her going.

Unfortunately on Thursday one of her friends (who I met at the hosp on Sunday) informed me that she is not doing well at all... and on Friday morning I heard that she had passed away. I feel terribly sad for her husband and friends and family :-( But she is breathing easily now.

RIP


Wednesday, November 5, 2014

Gym and week

This week has been going surprisingly well. Month-End has been very good so far (touch wood), and I've left work at my normal time. It may still change tomorrow and Friday but so far so good. This also means I've had time for admin and domestic stuff, and even went to gym today.

I've been feeling rather unmotivated for gym as the Nationals is over now, so that is not driving me anymore. Plus going to gym reminds me that lung function is not 100% anymore, but 47%. I'm also not trying to lose weight so THAT is also not a motivator either. I need to get my mind-set right again and realise that as lungs get worse, it's important for body to stay as strong as possible. So need to be strict with myself! I'm going for a Vitality Fitness Assessment tomorrow so hopefully that might help with the motivation as well.... somehow....

On a more exciting note, I've been asked to do short speech at the launch of a new Organ Donor Foundation campaign on the 13th. Don't know all the details yet but glad to be able to do something like this that I love. It inspires me!

Oh and pic below was taken on the way to work earlier this week. Pretty sunrise after rainy night