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!!!!

Thursday, December 25, 2014

Christmas present and past.... no words needed. thank you donor...








2007... (27 days before transplant)

2006... (very very sick and blue)

Wednesday, December 24, 2014

Merry Christmas everyone!

Merry Christmas to all my readers!  Thanks for still reading this! And thanks for the amazing Facebook comments I got on my previous post. I have pasted them all on the comments section of the post on blog so that I can always go back to them! I have also added 4 more names of people I forgot when I was writing the post at the time. I am definitely feeling better now :-) And ready for an amazing Christmas that I am very fortunate to be here for. xxx

Monday, December 22, 2014

83 months

Today marks 6 years 11 months with the new lungs. I am VERY grateful but I haven't had a great day. My mind is filled with everyone that I've known who didn't survive this journey... Jolandi, Helen, Lynn, Dominique, Dave, Louis, Francois, Ninette, Gustav, Santa, Maryke, Trevor (who received my donor's heart)... and I am probably forgetting a few right now.  Also thinking of those struggling in ICU right now, compared to the easy recovery I had. I don't understand why I deserve the luck/grace/miracle I have had and pretty much having survivors guilt. I just hope that my donor would be proud of me even when I'm not proud of myself.

Even with my chronic rejection I've been lucky. Most people I know on Facebook who have had chronic rejection/ BOS did not stabilise, and either received 2nd transplants or passed away relatively quickly. Yet I've been dealing with this for 2 years and it seems like I'm pretty stable... still doing what I could do 2 years ago minus some squash/running.

Hopefully I get out of this mood in time for Christmas. And hopefully everyone in ICU who have had transplants recover, and hopefully everyone doing well will keep on doing well. And those waiting will also get their miracle. And one day we will understand why things happen the way they do.

Sunday, December 21, 2014

Sushi, lights and cows

An interesting weekend was had here.... On Friday eve I had a post transplant/life first.... namely EAT SUSHI! As transplant patients we are told to be careful of eating sushi for obvious reasons. I've never tried sushi before but it's one of those things I've always known that I would LOVE. So I thought it's best if I never try it then I won't know what I'm missing. However my friend Fawn who is (also!) a model transplant patient has always made me jealous with her sushi eating escapades... so one month shy of my 7 year lungaversary I decided to try something new and "naughty". Being the hygiene expert and foodie and she is, Fawny organised a pleasant evening out followed by watching Gone Girl. I was spot on regarding my taste for sushi.... LOVED it! Just ate way too much and was soooo stuffed afterwards due to wanting to try EVERYTHING! Even ended up with a headache, but it was great. Only got to bed at 2am (which is late for this 30 year old!)

On Sat I was invited by another friend for a night in Pretoria that included movies, Christmas lights and breakfast buffet at Irene Diary Farm. We watched Love Rosie, which was a very cute chick flick. The lights were pretty and breakfast was yum and cows were cute, For the rest of the weekend we chilled with my sister and Pierre. At least this week is only going to be 3 working-days long. 3 BUSY days in all likelihood.... bleh. At least traffic should be non-existent. Next post..... CHRISTMAS!!!!

Wednesday, December 17, 2014

Video: The Breath Before

Video made by guy called Frank Sinner... brilliant