OCTOBER!

Whoop whoop we're in October! My lungaversary month! Will be celebrating at the end of the month with a picnic. Very excited about that.

I've been living on my own for 2 months now and loving it. Our divorce went through on Friday the 13th of Sept... So officially a divorced woman now. Every now and then I get sad and miss the way things were, but then I get excited for the future again and it passes.

We had a magnificent family holiday 2 weekends ago at a place called Evelyn Game Ranch, close to Mapungubwe National Park. Andrew ended up coming along as my plus one! We had an amazing time! The scenery is stunning, and we had the BEST elephant experience ever. My mom and dad and I were sitting in a bird hide, and these elephants just started walking past us... it was intense. The entire herd passed underneath us/next to us, you could hear every single noise they made! I uploaded the video to Facebook, you can see it here. I was a much needed holiday, the energy boost needed to finish off the rest of the year.

On the evening that we came back, it was the premiere of the documentary about my friend Talia and organ donation. It was a nice evening, and I managed to see my anesthetist again that I had for my second transplant! He was so cool, and have had him for one of my biopsies afterwards as well. Dr Hockman. Managed to get a pic with him and my lung Dr. You can watch the trailer for the documentary here.

Ohhh one last thing, since my last post I've also been indoor rock climbing with a new friend! LOVED it, hoping I'll be doing it again soon. It was super fun, and all those sessions at the bio paid off! I didn't make an ass of myself at all!

Loving feeling this healthy!!!!!! It will NEVER gt old. EVERY SINGLE DAY I think "wow... how amazing am I feeling?"... The thought that it might not last is always at the back of my mind, but I'm getting better at living in the NOW and not worrying about "what if".

Deaths, statistics and lung functions!

This past few days, two people that I knew in the lung-community passed away. Amber was 14 years post transplant. I've had contact with her since my first transplant, and she sent me a copy of her book when I had that transplant. She's had chronic rejection for a while, and from what I can see on Facebook, picked up an infection over the last few days and passed away. My heart breaks for her husband and little boy Noah.

Gontlafetse was a Pulomary Hypertention patient here in Joburg, who got lungs a few weeks back, but didn't make it :-( I've met her a couple of times when she's been in hospital. RIP girls...

“There are three types of lies -- lies, damn lies, and statistics.”

I'm really hoping the above quote is true. The statistics for a redo bi-lateral lung transplant are pretty terrible. In about 6 weeks' time I'll be part of the 32% of people who've made it 24 months post second transplant.

In any case, I had my best lung function EVER with these lungs today! Soooo chuffed. Been stressing because I've had a sore throat for the last 2 days that I've been doctoring. Lung volume was 120% and FEV1% was 97%. WHOOP WHOOP! Soooooo relieved. To hear your lung Dr say "There is NOTHING about your health that is a concern right now." is like a miracle. Next appointment is on my 2 year lungaversary!

My birthday was fantastic. I had a great time with friends and family, and attended a fancy event on the evening of my birthday on behalf of a fellow transplant athlete. I enjoyed the dressing up! Here's to 35 being the best year EVER!

Last day of being 34

Tomorrow I turn 35! Age is just a number though and so much more so when you've had your lungs replaced twice, meaning your life has had some severe ups and downs in terms of how old your body feels. I feel SO MUCH BETTER now than I did at 17... than all the years leading up to my first transplant at 23 years and 5 months of age. When my chronic rejection started at about 28, I started feeling older again. And exponentially older of each year after than, all the way to 33 years and 2 months.... to the day... when I received my second transplant. Before both transplants I felt 120 years old. My body didn't want to move. It wasn't getting enough oxygen. My brain didn't want to think. I didn't want to stay out late, because I got tired easily, and it meant the next day I would struggle more. I avoided walking. I didn't want to bath or take a shower, it left me blue and panting for breath. I needed a power supply almost constantly, to keep my portable O2 concentrator plugged in. I could barely pick up my 6-month old nephew.

Now however, I feel fit. I feel strong. I have loads of energy. I'm living on my own. I can plan overseas trips again. I can take pics of my muscles in the gym, because a) I can gym, and b) there are some small amounts of muscle, that has not been the case for most of my life. I can do stuff with Adriaan, and pick him up and carry him even though he weighs a lot more than he did at the age of 6 months! And apart from all of that, it's a freaking achievement for someone with CF to reach the age of 35, especially considering the level of CF care that patients in SA have access to. None of the new CF drugs like Symdeko, Kalydeco, Orkami... because they're too expensive. (but that's another rant for another day). A few Drs have said to me that I'm the oldest CF patient they've ever seen :-)

I've been doing loads of radio and TV interviews this month, with August being organ donor awareness month. Just one more to go as fat as I'm aware of! I've loaded a few pics below.

Tomorrow also marks 22 months with the new lungs. Ever since the first transplant, 22 has been a lucky nr for me. And I have a bit of a thing for numbers and dates, so 22 months with the new new lungs feels quite special. Happy lungaversary lungies. Tonight I'm having supper out with friends to celebrate, followed by a weekend of celebrations basically! Whoop whoop! May the second half of my 30's continue being as good as things are now.

Birthday month is here, and living on my own.

It's August! Yay! On the 31st I turn 35??!!!??? How did that even happen? I've also been living on my own since the beginning on the month, in my little apartment/flat that I'm renting in Linden. The first night or three was a bit strange, but I'm used to it now, and it feels like home. As of this morning I also finally have my internet sorted, so now I can REALLY settle in! On Friday eve Brendan, Andrew and Marius were here for a housewarming, which was very nice. Some pics of the new place below... just a rough idea and not staged at all! Will post decent pictures once everything is properly unpacked and hung etc.

The cats seems to have settled in nicely at my parents' house. Very relieved that that is going well.

Last week Monday I had a lung check-up. My CMV viral load is finally negative again, yay! Lung function was great, FEV1 was 94% (last time 95%), and FVC was 118% (last time 112 or 116% I think). Very relieved that so far these stressful few months haven't affected my health. Health problems are the LAST thing I need right now! Achilles tendon is also doing really nicely. I can run for short bits on the treadmill again! Yay! The helicopter pic was taken at the hospital on Monday... it was landing as I came walking down the hill. Always love seeing them land, and they make me emotional.

I was on TV on the 1st of Aug, which is the beginning of organ donation awareness month in SA. If you understand Afrikaans, watch the video here.

Other than that, the weather has been a bit warmer, and last week Sunday I had a great afternoon at Marius and Brendan's house, eating potjie (stew made on the fire for those who don't know).

And lastly... what would a blog post be without a pic of Ads!

Car accident, divorce, and awesome people in my life.

So much is happening, please excuse if this post is all over the place.

Divorce update: We signed the settlement agreement yesterday. So from our side everything has been done. I'm moving out into a little loft style cottage in Linden on 1 August. The cats are going to my parents. I'm busy packing and throwing out stuff that I don't really want or need. At the same time I'm buying items that I WILL need. Emotions are up and down. It's sad, but at the same time the future is also exciting. It's really the end of a massive chapter, and I will miss all of this. I'm hoping that by my birthday (31 Aug), things will be much better and I'll be settled in. I'm also very glad that things aren't ugly and that everything is very civilised between Chris and myself.

As if all this crap isn't enough to deal with, I was in a proper car accident 3 weeks ago. I was driving a rental car, because my car was being repaired after a small accident that I mentioned in my blog last time. Another car skipped a red traffic light while I was turning right, and t-boned me. I was taken to hospital in an ambulance, but luckily I didn't get seriously injured. My left hip was super bruised and banged up, lots of random bruises on my legs, arms and right knuckle. The seatbelt buckle also cut into my tummy a bit.

Apart from the excess I had to pay for the first accident and this accident, the towing company who towed the car was not authorised to do so by the car rental company, and they charged a fortune. All I can hope for now is that the funds will be recouped from the other driver who was at fault. At best I'll get the funds back in 3 months' time. It's so depressing how much I have had to spend on cars this month!!! The pic of the bruise was taken on the day of the accident... it ended up looking much worse, but at least it's much better now.

I had a great lung check-up again at the beginning of the month, my lung function was the same as last time, still at the all-time high. Thank goodness THAT is going well right now. My CMV viral count is still positive, so Dr has adjusted my meds a bit.

Fawn and I was also on The Gareth Cliff show one Friday morning. I was on his show exactly 10 years ago, before the Australian World Transplant Games. So I kind of felt like it was coming "full circle" being back on air with the second set of lungs. You can listen to the interview here.... listen after about 28 minutes though.

http://cliffcentral.com/gcs/extraordinary-stories-of-organ-donation/?fbclid=IwAR36AOLFVnIzXL2Jn5iHcsB-SYidpfauyiQQlhsJMpdvgbKn06atndNuwe8

Just after my previous post, my mom and I went to visit my aunty Deanie, who we haven't seen in a while. Still the brightest 90 odd year old person I know! She googles, checks her e-mails once a day, still drives herself around JHB! A remarkable no-nonsense person.

Fawn and I also had a great catch-up lunch with Aviva at The Fireroom in Montecasino. Sushi and gin...... it was YUMMY.

I stayed in my parents' house for two weeks while they were in Greece earlier this month, and my friend Bonnie stayed with me some of the time. It was super fun just having a "girl's night" vibe and chilling by the fire.

This past weekend was Andrew's birthday, and 9 of us went away to a house he rented for the weekend. It was just what I needed. Getting out of the city, catching up on some sleep, laughing so hard your abs hurt. It was strange to go alone, and I guess it will still take some getting used to.

Lastly... despite all my complaints above, physically I feel like I'm in a better place than I have ever been. I'm not as fit as I've previously been, but on Tuesday I was able to run a little bit again for the first time since October last year before I tore the Achilles. (This was supervised by my bio! I wouldn't have the courage to try it on my own!) So my body is feeling strong overall.... no reflux... and lungs are pristine for now, I'm physically feeling better than I did for most of my life by far. In fact, I almost feel like I need to make up now for all the life I missed out on between the ages of 18-23 and 32-33, when I was waiting for lungs again. I was THAT person in the gym 2 weeks ago, who took a photo in the gym, because despite my accident-bruise, I don't think my arms have ever looked this strong :-) After these last two months, I think it will be more than just my arms that have grown stronger...