Friday, August 30, 2019

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.

Monday, August 12, 2019

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!