And it's finally here.... the WTG 2013!!!

Firstly... happy birthday to my little sister who is 26 today!!!!! Wish I could see you today!

So we arrived in Durban 2 days ago... I've been having an amazing time ever since!!! Seeing old friends from our team and from other countries, meeting facebook friends for the first time in "real life", just experiencing the whole vibe again... I truly LOVE the Games... really hope I can go again in 2015! Today was squash practice session, which went well, and then tomorrow is the actual competition. We also have the official opening ceremony tonight. It's always pretty emotional and amazing... but thought I'll post some pics in the meantime...

 

Poem by Bree... still miss her a lot, we would have met at the WTG in Sweden 2 yrs ago...

Tonight I laid in bed
And nothing else mattered
Because I am alive
I opened the drawer beside my bed and pulled out my stethoscope
And listened
To all that i've been given
Safely enclosed inside my chest
Behind a tiny wire
Behind a long, clamshell line
Surrounding my heart
Two beautiful creatures
Kindly entrusted to me
In my careForever
LifeGiven and received
Taken with thanks
Celebrated in all aspects

So i listened
Inflate
Deflate
Inflate
Pause
Not a sound
Not a crackle,
or wrinkle
Not a wheeze or a pop
Nothing sloshing or gushing
SilenceBeautiful silence

Where once i could not blow out a candle
I can now run down the street
Where i once could not laugh in the slightest
I laugh long and hard
Even though no sound comes out
Through the casing of my stethoscope
Can i hear my life
Can i see it rise and fall beneath my eyes
Fragile, yet strong
Clear
From the bottom to the top and all around
Sounding like parchment paper, so thin, yet two little warriors
Keeping me going
Keeping me breathing
All thanks to the kindness of another whom I do not know
And never will

It is strange to me that these wonders were not born with me
We were not made together
But manufactured apart
Yet somehow, someway
Our lives became one
And you saved me
And will continue to do so

So tonightWhen the world may seem scary
And material things uncertain
I listen through my stethoscope
And remind myself
In this moment
Nothing else matters

One more day of work then we're off!!

Tomorrow is going to go really slow at work I'm sure!!! Had my last gym session today, feeling fairly confident. Mostly packed and ready. STILL don't have approval from Discovery for the photopheresis... maybe tomorrow!?!?! SO ANNOYING.

On Tuesday they organised a lunch for me at work which was a nice suprise, and even got a Good Luck teddy bear! So all in all it's been a good and productive week, apart from the medical aid issues.
Next time I update it'll be from Durban!

5 .5 years... 65 months

This time 5 and a half years ago I was in surgery! And today I'm 6 days away from competing in my 3rd World Transplant Games. I'm extremely blessed... whatever challenges I face in terms of having to undergo photopheresis, this is still an amazing miracle...

The rest of the weekend was nice, had drinks with a few friends and tea and pancakes with parents. Now just HOPING AND PRAYING to get good news from Discovery and survive the last 4 days of work before the Games!

Still Waiting

So Discovery (my medical aid) still haven't approved the photopheresis, but they're working on it as they called my Dr yesterday and apparently my case is now with the Clinical Procedures Unit or something like that which, according to the woman I spoke to, is a good sign. Didn't know it was going to be this much of a mission to get the authorisation! Please pray it gets approved early next week!!!

I finished work early today and decided to go for a haircut, colour and treatment which was very nice and relaxing. Also had supper with Andrew and Brendan tonight which was great. The rest of the weekend should also be nice, and next weekend it's off to Durban!!

Update on rejection and anxiety issues

So what's been happening on the lung-front? Well in terms of the photopheresis I'm still waiting for my medical aid to approve the treatment. I called them yesterday to follow up and turns out it could take up to 7 working days :-( I really hoped that I would be able to start treatment this week but that's not happening obviously. Please pray/cross fingers that I'll at least get approval this week still so that I can start next week.

I also went to see a psychiatrist regarding anxiety problems I've been having. My lung Dr has been suggesting this since Jan but I've been ignoring it/ brushing it to the side as I didn't feel that it was neccessary. However in the last few weeks (especially since lung function started dropping) I've been having episodes where I feel like I can't breathe and my heart-rate increases quite a lot. ESPECIALLY when I get into the lung function machine, and sometimes even at gym and often at night when trying to sleep. So it's a little bit of a Catch 22 as well, as anxiety could affect lung function and dropping lung function makes me anxious!

So in summary I'm being treated for chronic rejection AND anxiety and hopefully lung function will come right again or stabilize (I'm not strugling to breathe - apart from when I get panic attacks or run really fast - and can gym and work etc as I have always done so even if lung function just stabilises it would be fine). I started the anxiety meds on Monday and am already feeling better and had great gym session today, so feeling hopefull that this whole situation will sort itself out eventually!

Trying just to focus on the Games though, as it's going to be GREAT, and will probably be my last holiday/break for a LONG time, as the photopheresis will be eating up all my leave.... sick leave and annual!

Official song for the World Transplant Games

You can listen to the song here: https://soundcloud.com/#raise-your-voice-sa/our-hearts-are-beating

Kitted out for the Games...

In 2 weeks time we're in Duban... yay! Can't wait!

 

Photopheresis

So.... lung function has dropped more, FEV1% was 69% yesterday. My stupid immune system is scratching where ot doesn't itch ... bastard. So my Dr said our next step is photopheresis. Basically they treat your blood with UV light to put the T-cells back in their place before the blood returns to your body. It's "safe", so no real side effects and I've heard positive feedback about it on the lung transplant group I belong to on facebook.

The treatment is done at a Pretoria (city next to Joburg) hospital and I'm meeting the Dr who does it tomorow morning. Hoping the meeting goes well and that the plans can be set into motion. Will probably have to get some sort of catheter or port and this shouldn't affect my participation at the World Transplant Games but I will know more tomorrow.

Interview - RunTalk SA

Did an interview yesterday with the friendly folks at Run Talk SA! See link below if you want to listen to it:

http://www.runtalksa.co.za/running-podcast-episode-7/

3 weeks....

Until the Games start... going to try to be as ready as I can be... despite all the sick people at work and lung function doing weird things and feeling anxious! This weekend has been relaxing so far, been to gym Friday evening and yesterday morning (will go again later today), went to visit my friend Fawn who got her new lungs 4 months ago, was great seeing her outdise of hospital for the first time ever!

My mom and I also went to Lifestyle Garden centre where I bought some plants and a new pot for my bonsai tree plus some bonsai seeds... will try to grow my own! Weather seems nice today (yesterday was a bit cold) so will be doing some much-needed gardening and stuff around the house. Hopefully this week will be a good one.

work work work...

I don't think I've ever had a week where I've worked this hard and been this stessed about work since... well EVER. This last week I've been working 11 hour days with no breaks and barely time to eat while working... I'm hoping tomorrow will be the last day of this... for a while at least!! Not good for my fitness or mental wellbeing :-( THANK GOODNESS tomorrow is Friday.

Next Wednesday it's me and that bloody lungfunction machine again... but until then I'm just hoping for a relaxing weekend and some much-needed gardening. Not much other news I'm afraid. Oh and in case you couldn't tell by the pics in my previous post, last weekend with Louzanne was GREAT!