Conundrum of surviving

A neglected “by-product” of beating the odds after two bi-lateral lung transplants, is how hard it is to plan for your life financially and career-wise. I couldn’t finish my Honours in Accounting, as I was ridiculously sick. After my I got new lungs, I didn’t feel like going back to university, I wanted to work and become independent. When I started working at age 24 after my first lung transplant, I THOUGHT that I was financially behind my peers who started working slightly earlier, but looking back that was a joke… I was perfectly on par really.

However fast forward 7 years and about 3 months, and I was medically boarded, due to my transplanted lungs being rejected by my body. And for about 3 years prior to being medically boarded, I knew that I was in rejection and that I should stay put. Survival mode kicks in, ambition mode turns off. To paint the picture more clearly, at age 28 I knew that my life was in danger yet again, and that I just needed to stay in the position I was in for as long as my lungs held out.

I coped in a fast-paced environment for another 3 years, until I made the call, together with my lung specialist, that I should stop working. I was very lucky to have group life insurance at that point, so I continued getting 75% of my salary – tax free. At the same time the evaluation for a second lung transplant started. About 1 year and 9 months after being medically boarded I received another set of lungs… a miracle indeed! 

Now being an analytical person by nature, I was curious as to how long these lungs were going to last. My lung specialist refuses to give educated guesses on these types of questions, which is absolutely fine, but I wanted a vague idea. Dr Google said that the 2 year survival rate for a redo lung transplant is 32%. Obviously this is an average, but I decided to make the most of it. (FYI – I’m still the only surviving redo lung transplant recipient in SA). We travelled to New York and Mauritius during the first year after my second transplant, I fixed some things in and around the property that my ex-husband and I owned at the time, upgraded the little Peugeot 107 that I was driving… I didn’t want to go back to a corporate work environment, so I resigned once I was fit to return to work. This time around I took a much more slow-paced accounting job. Set for life…. If you’re going to live another two years that is.

Fast forward to beginning of 2022, and I was heading towards 5 years post redo transplant. I decided to study again, as I was lacking mental stimulation. I ended up picking a post graduate diploma in Financial Planning. A few months later I started a new job, more in line with my studies and a much more formal work environment again. But also in a way starting from scratch. The irony is that in my own life, applying financial planning skills is almost impossible. I think of where I would have been now, if that rejection of my first transplant didn’t happen. If all the retirement savings from those first two jobs kept on growing, if that salary kept on growing the way it would have. If I didn’t use savings for travelling. I’m not even going to bother wondering where I would be financially if my medical aid and the little co-payments here and there didn’t take a massive chunk of my salary. Also – there was divorce – but that is not a scenario unique to me.

The point that I want to get across, is that trying to figure out how to navigate saving/ having a career/ having a work-life balance when you have had two organ transplants (and especially lung transplants, because they have the worst outcomes of all the organs) at ages 23 and 33, is HARD. You can’t assume you’re going to live to age 65 when your first transplant was at 23! And hey, YOUR life is super short right? Live every day to the fullest! BUT you might end up living for a really long time and have to be able to support yourself and have a meaningful career, so there is that too. Nobody prepares you or warns you about this interesting tightrope, and you can’t expect that from anyone either, as each patient’s situation is so unique. But this is definitely an interesting challenge! One that I'm grateful to be facing.

2 Year Second Lung Transplant Lungaversary and upcoming trip!

My life is going so gloriously fast-paced that I hardly have time to blog anymore! 16 Days ago I celebrated 2 BRILLIANT years with the second set of transplanted lungs! What a journey it's been.... emotional and life-altering highs and lows, Mauritius, New York, bushveld, divorce, living only own, dating, upcoming trip.... but what has been stable and dependable are these BREATHERS! My check-up on the 30th went swimmingly. Lung function fantastic, x-rays beautiful, bloods fine.

On the evening of the 31st, TELL's branding Company, Murmur, had their 1 year birthday celebrations just across the road from my house, so that was the perfect way to celebrate!

The other big news is that today in a months' time I'm off to the UK to visit a whole bunch of friends and my aunt & uncle. It will literally be all over... London, Bristol, Yorkshire, and some Scotland too!
I haven't been this excited in ages, and it barely feels real yet. But I have the Visa, all the tickets have been bought, Scotland accommodation booked... eeeekkkkkk.

Achilles Tendon journey

Yesterday marked a year since I tore my Achilles tendon playing squash. Largely due to years of being on Prednisone, combined with squash and bad luck. It's been a long recovery.... much longer than any of my lung transplant recoveries (how crazy is that??). It's still quite a hectic scar... I try to remember to put tissue oil on, but I forget. All that I really care about is that everything is functioning again and I can DO STUFF again! Below is what it looks like now... All the other scars on my body look great, so hoping this one will eventually follow suit.

The timeline was as follows:

26 Oct - tear tendon
1 Nov - surgery to repair tendon
14 December - cast comes off and instructed to wear a wedge heel.
17 December - fall in my parents' garden and tear open the entire thing, splitting it in all directions (did not post a pic of that, some people might faint)
17 Dec - second surgery to repair tendon and replace with artificial tendon
1 Feb - cast comes off and I get a moon-boot
Wound doesn't look great at the bottom so many visits to wound clinic.
17 March-ish - Moon-boot comes off. Slowly start walking "normally" again.

It took MONTHS to gain muscles back in left leg, a lot of physio... left calf muscles still not back to normal yet. Had to withdraw from the team for the World Transplant Games in Aug this year :-( See pics below (sorry if some of them are still gross):

In other news, TELL was featured in the Rosebank Killarney Gazette last week, and in the Times Online two weeks before that, which is great.

Andrew has also helped me hang my pictures in my flat, so it's really looking nice. The Jacaranda trees are also looking stunning! Pics of all of the above below! ONLY 3 MORE SLEEPS TILL MY 2 YEAR LUNGAVERSARY!!! Will blog again later in the week!

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".

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!