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...

Meeting first donor's son, Achilles and Nissen updates, "gaybe" shower...

It's been almost a month since I've blogged! There's just too much happening, I don't have time to sit down and type a post! But let me try and do a quick update, for those who don't see me often, and don't want anyone thinking I died or something!

Health-wise, nothing has happened on the lung front, but I had a check-up with the gastric surgeon, and he is 100% happy. I can now eat all food again, yay!!!! HOWEVER if I eat too much I feel terrible. And my capacity to eat is a lot less still than it used to be. So I just need to be mindful of that. I can also drink my meds in pill-form again, yay! No more gross liquids! Surgeon said that my previous Nissen was badly positioned and executed, and that he reversed it, and moved it up 4cm. So far it definitely feels like it has worked... no reflux-type feelings. May the lungs be forever free from foreign food objects now!

Achilles tendon is looking OK... better than it did!!! Like a million times better! Muscles still have a long way to go though. It will take MONTHS to heal properly. Working on it.

I've been BEYOND BUSY with our NPO TELL. Our website is up now. Our #makeitknown campaign is in full swing. Did a radio thing on Friday night that you can listen to here. In case you don't know what that is... we've got a campaign going where people are getting quotation mark tattoos so show that they're committed to being organ donors one day. The reason for the quotation marks, is because organ donation is a conversation, and it shows they've had the conversation. Even Chris has gotten the tattoo!! So we've been liaising with tattoo studios across the country. It's been really exciting and hard work at the same time.

What's been super special, and I meant to blog about this earlier, is that at the first #makeitknown tattoo day on 15 April, I finally met my first donor's son in real life. I've met his aunt many years ago, and I've been Facebook friends with him for a long time, but he came for a organ donor tattoo and we met :-) It was really great. (yes yes, you're not supposed to know who your donor family is, and they don't tell you, but in our case the media was involved, a documentary was done, and two and two was put together. Long story... which I don't feel like getting into.) Bottom line is, it was so amazing to meet the guy who played such an important part (probably THE MOST important part) in the almost 10 years that I had with my first donor's lungs. We both have tattoos in honour of his mom... he has a big one on his ribs, and I have the date of my transplant. So we even got some pics of our tattoos together... so surreal to see those dates next to each other.

Our friend from Cape Town, Ditha, was here at the beginning of the month, and we had a great baby shower for her! Or rather "gayby" shower! Ladies and gay men! It was LOTS of fun!

Last night was also quite fun. We all went through to Pretoria in an UBER van to a 40th birthday party! Between that and Friday night's late radio interview I need to catch up some sleep, but it's all worth it!

The lungaversary party, the Achilles and the radio interview

On Saturday evening the 10th of Nov, my parents hosted us and a couple of friends for a 1 year lungaversary party! It would have been more fun and I would have felt less useless if I weren't on the crutches, but it was still great!

The following Tuesday I was on Jacaranda FM, a local radio station, to talk about CF and transplant. I was on the show for the whole hour, talking on and off... but they put the first bit on their website... if you'd like to have a listen!

I also had an Achilles check-up on Friday. I can now walk crutch-free! I'm wearing this sandal thing, with two heels on the inside, and it's allowing me to put weight on the foot. This "pointed toe" position doesn't put strain on the tendon. On the 14th of December my cast will come off, whoop whoop! Then I have to wear high heels for another 6 weeks and start with physio. I was able to return to bio last week, which was GREAT. I'm trying to strengthen my left thigh, as it's already lost quite a lot of muscle. It's just great to be doing some sort of workout again.

I also asked to do a lung function test while I was at the hospital on Friday, because I had been feeling a bit anxious. My new medication (cyclosporin) levels are STILL too low, and has been adjusted for the 3rd time in as many weeks now. Normally when a bout of anxiety hits me I fix it by doing cardio.... I always feel relaxed and comforted again after a short run or spinning class. Now I can't do that :-( So I did a lung function test and luckily all was good. Phew! By the time the cast comes off I should also be able to switch back to my normal anti-rejection regime, which is a fifth of the cyclosporin I take now, plus Everolimus (Certican). Looking forward to that! And to slowly increasing my physical activity. It's been amazing to be able to do some stuff around the house again for the last 2-3 days. Some freedom!

1 Week post Op

It's been a week since my surgery. Two weeks ago was the last time I was able to walk. Surgery went well. The spinal block wasn't too bad, the sedation was probably not as effective as it should have been... I'm pretty immune to Dormicum etc by now, so I remember chatting a lot... asking the surgeon if I was take a look at what he's doing, talking to the anesthetist about the world transplant games, asking if my right leg is in the air (???)... pretty much like being drunk.

When the spinal block wore off the pain was rather intense. And I left it a bit too long before asking for pain meds... rookie mistake. I spent Thurday night in hospital and was sent home on Friday. Since then I've spent most of my time with my leg up. The pain is better now. Still can't put any weight on it though and fully reliant on the crutches. Seeing the surgeon again on the 16th.

I'm feeling pretty upset in terms of what this means for the World Transplant Games in Aug next year. I've officially qualified as part of the SA Team now, which was not an easy process. The surgeon said I shouldn't give up hope for the Games yet... but other people are suggesting I should. And that I rather never play squash again. I'm also hating being useless like this. I can't even carry a glass of water. Even when I was on oxygen, I wasn't THIS dependent on others. And of course spending this much time on the couch reminds me of when I couldn't breathe. Yes I know things could be much worse, and I am super thankful that my lungs are doing well, but this has really bummed me out. I'm also worried about the change in anti-rejection meds for this surgery. My kidney function was already a bit worse after 5 days on the high dose of Neoral, and I'm just hoping the lungs are happy with it.

On a different note, I took part in a "scar" photoshoot in April. It was quite fun, and the final product has been revealed. Here is my picture, and please check out the photographer's blog post on it!

Wish me luck on this massive recovery process. And patience.... my WORST virtue.