Sunday, January 25, 2015

Operation #StayStrong

So this week I got an e-mail from my medical aid rewards program, Vitality, stating that I had to go to gym at least another 4 times in January in order to keep on getting an 80% discount on the fees. So off I dragged myself to the gym today. It's very hot outside, I'm pretty tired from the last week and yesterday and last night's festivities. But possibly losing my 80% discount was enough incentive to make me drag my but over there and do some weights.

At the gym I realised something that I've always known, and that is that I need a goal in order for me to keep fit. Since my transplant it has always been the World Transplant Games. And that was an AMAZING motivating factor. Living the post transplant sports-dream. But now my lungs aren't quite there anymore and for the immediate future there will be no more World Transplant Games. My previous fitness goal was taking part in the Nationals for 2014 in October, which I did and gladly so. However since then I haven't been motivated to go to the gym at all. It's not nice when things that were so easy 2 years ago are now a struggle. So I've been putting it on the back burner.

I also realised that of the 3kg I've lost since the National Transplant Games in Oct, some of it is definitely muscle. I need to get it back. So today I've decided my new goal is Operation #StayStrong. I considered calling it Operation #GetFit, but I'm realistic and in saying that I might not get very "fit". Also, the word strong is better when it comes to including more eating as part of it.

Today also marks 2 years since I was hospitalised for my first big drop in lung function (It dropped from high 90's to mid 80's). So it's a fitting day (see what I did there?) to start Operation #Stay Strong. This week I obviously still need to go to gym 3 times in order not to lose my discount, but after that I HAVE to go 2-3 times a week. I'm hoping it will also improve my energy levels (they've been a bit lower, my guess is that my O2 sats are probably lower than they used to be and it's affecting my energy). Also, I cannot do anything to improve my lung function, but I do have control over the rest of my body (I use the term "control" loosely), so I need to at least work on that, as bad lungs in a fit body is way better than bad lungs in a thin, weak body.

Friday, January 23, 2015

More celebrations and 7 year check-up

Today was check-up time again. Skipped December so any changes were over 2 months and not one as per usual. Lung func was down 3%, sitting at FEV1 45% now. Weight down 2kg. Drop in lung function kind of expected, but weight-loss not so much. I know I haven't been eating enough so it's not really surprising. HAVE to make a point of eating more. The bloods were all good again, thank goodness. All in all a bleh check-up. Need a holiday!!!!

Last night was Celebrations #2 for the 7 year lungaversary..... supper out with the parentals and sis & hubby. Was really nice. Ate a LOT (good start to solving the weight problem)... yummy fillet with prawns and the most DEVINE chips. Pancakes with lemon juice and cinnamon sugar for dessert.

Tomorrow eve is the last of the lungaversary celebrations. Having some special people over for supper and very special wine. Hopefully will go well. Rest of tomorrow also filled with activity, hoping to chill on Sunday (and go to the gym). Need sleep!!!!

Check out the pics below of my beautiful family. And flowers from Chris. Have a good weekend people.

Wednesday, January 21, 2015

'Twas on this night.... 7 years ago

7 Years ago tonight that I got the call! Thanks to my lovely amazing super donor and her family!!! Love them all to bits and hope they know it. Read that night's spine chilling post here! Still gives me goosebumps.

Was supposed to see the lung Dr today but that got moved (again) to Friday (hopefully). Tomorrow evening we're going out for supper with my parents, Chrislie and Pierre to celebrate on the actual lungaversary date (the 22nd).

Also got word from the gynae yesterday that all is good for now, so that's one less thing to worry about for the moment.

Happy 7th birthday lungies, love you xxx

P.S. (especially to my dad) No this is NOT a new tattoo. I've had it for more than a year now :-p

Sunday, January 18, 2015

Celebration #1 - Braai with friends

Last night was great, had 12 friends over for a braai. It was an amazing evening and enjoyed it a lot! Thanks to everyone who made it special!

Wednesday, January 14, 2015

8 sleeps!

In a week's time I'll be having my 7-year lung check-up (hopefully it doesn't get moved around again!). Need to go for bloods this weekend... definitely on Sat morning and NOT on Sunday morning after my party LOL! Otherwise Dr might think I need a new liver and kidney too :-) Yesterday I had semi-annual gynae check-up. So waiting on the results of that. Bit nerve-wrecking. Also... everyone at work is sick so trying to dodge that bullet. Meh

Apart from these medical stuff my life has been boring. Had a fun time with friends on Friday eve, playing 30 Seconds and watching Muriel's Wedding until the early hours of the morning. Tonight we'll also be having supper with friends so that's gonna be great.

Also realise I haven't posted a kitty pic in WAY too long, so here is the fat cute ginger Pumpky. We bought a throw for our couch (because he ruined the leather!) and now he thinks we did this just for him. How can you be mad at that face though!!!!

Friday, January 9, 2015

Just a random post

Don't have anything specific to blog about... finding myself in a bit of a post-Chrismas, pre-Lungaversary empty space. Been extremely busy at work so not much been happening socially.

Firstly, I've updated my blog post about Emily. Feel free to go and read it again (assuming you did the first time). A lot of thought went into this post...

Then.... I haven't mentioned this before, but Jenna, who I've also blogged about before, received her lungs a month ago! She is still in ICU but from what I gather gaining strength. Wishing her well for the rest of her recovery and hope to meet her someday! She has done so much for organ donation and have no doubt she will make her donor proud.

Next weekend I will be celebrating my lungaversary with friends, and the weekend after with family! SOOOOO EXCITED. I know 7 years is a random nr but to me it feels really BIG!

P.S. Saw this article on facebook today, and really thought it's good. I also think I'm fairly good at the topic at hand, as are most people who have faced a chronic illness and who do not cherish drama in their lives. Excuse the language!

Developing the ability to control and manage the fucks you give is the essence of strength and integrity. We must craft and hone our lack of fuckery over the course of years and decades. Like a fine wine, our fucks must age into a fine vintage, only uncorked and given on the most special fucking occasions.

Sunday, January 4, 2015

2015 so far

I see my first post of 2015 didn't include any details on New Years Eve... well it was a great night! I normally HATE NYE because there is usually no-one in Joburg and it's boring plus a let-down. This year however we found ourselves at the house of Sasha and Cam for a braai. They are new friends we met via Fawn, and such lovely people! It was a lot of fun, and lots of drinks were consumed! We also decided it's better to stay over for the night rather than driving home, so only made it back home at 7am the next morning. Great way to start off the year and already "resolution" #3 is being met.

On the 1st we decided to go for a walk at Emmarentia Dam, despite my headache from the night before! It rained in the morning but the sun came out and it was STUNNING. And also peaceful with the whole of Joburg seemingly being at the coast. We also dropped Antoinette off at the airport after her visit.... went so quickly :-(

On Friday work was CRAZY busy, and yesterday I just slept late and cleaned the house. Had supper with parents last night and lunch with Chrislie and Pierre today. Got to try out my xmas pressie from my gran, a Le Creuset dish. Been a really relaxing day, had intentions of going to gym but I failed. Maybe in the week....

Thursday, January 1, 2015

2015 is here!

It's a new year! Happy 2015 everyone. May it be a good one.

A year ago my only resolution was NEVER GIVE UP. I think I can say I achieved that. This year I have no resolutions, but rather a wish list.

  • Travel, more specifically go to California to visit Anna and Casey (depends on health, finances...)
  • For lung function to remain stable (in 2013 it dropped 32%, in 2014 it dropped 15%, so that's a good trend I guess). Currently at 48%
  • Enjoying time with old and new friends. We've made a few new friends in 2014 which was probably the highlight of the year. Friends cheer me up, motivate and inspire me, and I love them.
  • I need to stay motivated for gym, even though I can't do half of what I used to, I still need to GO and stay as fit as possible. It's hard to go to gym when it's such a reminder of the crappy lung function! I feel 100% during all other daily activities but gym brings me right back down to earth and gives me pre-transplant feelings of breathlessness. 
  • Quality time with Chris and rest of family, loving that Chrislie and Pierre have been in Joburg for a year now.

Wednesday, December 31, 2014

My blogging muse Emily has passed away :-(

Late 2007 I started reading my first blog. It was called This is my life and I choose to love it. It was the first time I felt really connected to someone who has experienced what I was going through at the time even though she was in the UK. Her positive vibe was contagious and she cheered up many a bad day for me.
29 years old, small blonde and smiley. I love life, but was facing a death sentence due to end stage cystic fibrosis. Thanks to the generosity of a stranger I received a life-saving double lung transplant in January 2007, and am now a very proud mummy. I am very much a people person and a rather girly girl, loving all things pink! I enjoy talking, laughing, utilising my love of talking in the form of public speaking and awareness raising, and inventing new words and then being unable to separate them from real ones in my head.
As you can see she received her lungs exactly a year before I got mine. She also had a little girl 19 months ago via a surrogate mother.... and at the same time received treatment for chronic rejection. She was stable however and all seemed well until she contracted pneumonia in October that lead to respiratory failure and the need for a 2nd transplant. Apparently she did receive lungs again very recently but the transplant was not a success.

Even though I never met her in person, the internet seems a bit emptier and my heart breaks for her husband and baby girl :-( Read this blog post by a fellow CF and twice double lung transplant recipient Kirstie who was very close personal friends with her. Another beautiful blog who definitely does Emily justice is this one by Holly,

I don't think our psychiatrists and psychologists realise the full effect of having fellow transplant/CF friends, with whom you share a special bond and outlook on life, and what happens to us when they pass away. Most likely from the same thing that you will... (rejection or some sort of cancer probably if you are post transplant). It's a mix of sadness and fear and loss and "fuck CF". But you cannot decide NOT to be friends with these amazing human beings because your life would be emptier and definitely lack some purpose. The benefits far outweigh the down-side so it's just a part of transplant life.

Some people have suggested you rather keep your distance and spare yourself heart-ache along the line, but that's pretty much impossible and would also mean other people should rather keep their distance from me for the same reason.
RIP Emily

Sunday, December 28, 2014

Anto's visit thusfar and Liliesleaf Farm

As I've mentioned before, my PE friend since we were in primary school and my official transplant media liaison person (she updated my blog during the post tx and before I had internet period!) has been visiting us since the 26th. She will be here till the 1st. Very very cool! Unfortunately I will be working Monday, Tuesday and Wednesday while she is here, but will make the most of it after hours. I also got these handmade biscuits from here (along with some other cool pressies!)

So far we've done shopping, some eating out, chilled in front of the TV etc and visited the historical Liliesleaf Farm in when Nelson Mandela was captured in 1963. Very informative and cool museum, can't believe I haven't been there yet and it has been open for as long I have been living here! Highly recommended!!!!