Sunday, December 9, 2018

Current employment, disability, weekend in Cape Town, Achilles situation

Some news on the working front: I am officially not on my previous company's disability payroll anymore. The most recent reports by my Dr indicated that I'm fit enough to return to work. However... having received a THIRD chance at life, and spending the last 2.5 years of being on disability reflecting on what a balanced life means for me, the consequences that stress has had on my health, and the important things in life... I decided not to return to the corporate rat race.

Instead, I will be working for my life-long friend Andrew. We've known each other since Grade 1, we studied together, but he obviously completed his honours degree and became a Chartered Accountant, unlike me. He also stood by me through 2 lung transplants. He has for the past 3 years been working as an interior decorator, leaving his corporate job to start his own business. He was a finalist for the "Top 35 under 35" CA's recently. I'm officially assisting him with accounting work now. Whoop whoop! I couldn't have asked for a more perfect set-up. The hours are flexible, I have time for decent exercise and sleep, life admin, managing TELL, and Drs appointments. I feel like a productive member of society again! I'm also very lucky to have a supportive husband!!!! So excited for 2019!

Last weekend I was in Cape Town for a few days to meet my very close friend Louzanne's baby girl Olivia! She is 6 months old now, and I don't know when I'll be in Cape Town again, so I made an impromptu decision a few days before I tore the Achilles tendon to go down for a long weekend. I was worried that I'd have to cancel the trip when the Achilles tore, like I had to do with 2 other small trips, but lucky the surgeon was happy for me to go. It was super awesome. I also got to see 2 other friends, Ditha and Carmen, who stay close to Louzanne. There are SO MANY people I'd love to see in Cape Town, but I need a proper period of time there! So it was just was just a short visit to meet the baba. In terms of "touristy" stuff, we managed to have the most amazing high tea at the Mount Nelson Hotel, as well as visit the Zeitz MOCAA art gallery in the waterfront. And of course had some lunches in the vineyards. It was amazing.

Only 5 more sleeps until the cast on my leg comes off!!!! I really cannot wait. The last 2 weeks have been SUPER hot. It's been in the mid-30's (Celsius) almost every day. So my leg in the cast has been unhappy, itchy, sweaty... Friday can not come soon enough! Then the slow process of rehabilitation really starts. I'll be wearing heels for 6 weeks, to aid the repaired tendon. I also need to find out exactly what I may and may not do, to ensure that it heals as well as possible. Being immune suppressed means that technically it will take longer to heal than for a normal person. (I say technically, because previous wounds of mine have healed very well, and in a timely manner, while a cold takes AGES to get over!)

That's all from my side... hope you're getting into the holiday spirit too!

Monday, November 19, 2018

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!

Thursday, November 8, 2018

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.

Wednesday, October 31, 2018


IT'S OFFICIALLY 1 YEAR WITH THE SECOND "NEW" LUNGS! It really feels rather unreal. Even though I won't be spending my day as planned (more about that later in the post), it's such an amazing day of reflection and gratitude.

A year ago this time I was in theatre already, after being called just after midnight (apparently I missed a call from my Dr just BEFORE midnight!).

What an amazing year it's been!!! If you follow this blog or know me, you will know about all the travels and exercise and fun, so I'm not going to go into that now. All I can say is that I am so relieved to have had my first year without any lung complications! There has been some medication interactions and a bad sports injury (keep reading this post!), but no lung problems or signs of rejection so far. Thank God.

So on Friday I was busy having squash coaching, when suddenly it felt like someone had kicked me hard in the left heel, and I collapsed. It was only painful for an instant, but I couldn't move my foot properly, and there was an obvious "gap" by my Achilles tendon... I went to Casualty, and it was confirmed that my tendon had completely torn. So tomorrow I'm scheduled to have surgery to have it repaired... A bit nervous... I'm getting a spinal block and sedation for it. The recovery process is SUPER LONG! I'm quite upset... I've been cancelling quite a few plans now, and I'm very concerned about the World Transplant Games next year. I've worked so hard to get to this level of fitness and to qualify for squash. Everything seemed to be falling in place and now this...

Unfortunately the fact that I've been using prednisone since roughly age 6, does not help in this case. It's probably a miracle that I haven't injured myself as a result of years of steroid use before... And it means I'm prone for this to happen again. So that's rather depressing. For now I'll just take it one step at a time. Pun intended. Can't wait for tomorrow's surgery and the night in hospital to be done with!

Saturday, October 20, 2018

11 sleeps till my 1 year lungaversary with the second lungs!

How has it been 18 days since I've blogged??? Excuse the cliche, but time flies when you're having fun. In 11 days' time I'm celebrating a proper lungaversary for the first time in almost 2 years. My last "proper" lung anniversary was my 9 year one in Jan 2017. Two months before I was supposed to celebrate 10 years, I got the new lungs! So I'm super excited. I have a whole bunch of awesome stuff planned for the day!

Life's been busy and awesome. Two weekends ago we had a great Sunday afternoon pool party at Brendan and Marius' house. We always have the best times there!!!

Obviously I've also seen the favourite nephew a bit as well:

The biggest news is that on Tuesday we had the official launch function of our new NPO TELL. We organised the whole thing in 2 weeks.... and it turned out so well, despite some sleepless nights! The food (sponsored by the amazing Pippa's Food... this woman is amazing!) was delicious, the vibe amazing, the speakers great, a good turnout... we felt so blessed and special and excited! We have such great support and people have been awesome. Very relieved that this event is over though! Next week should be a bit more chilled!

It's also Jacaranda season... last year I kind of missed it... they were late in blooming, and when they did, I was in hospital recovering from the transplant. They're BEAUTIFUL right now. I went for sundowners with Andrew and two of his friends at the Westcliff Four Seasons Hotel yesterday - just for the views! We were NOT disappointed!

That's all for now... the other big thing that I need to do before the end of October is to re-qualify for the World Transplant Games next year. I've been having squash coaching sessions... this past week it was squash on Monday, bio Tuesday, squash on Wednesday and bio again Thursday. Working on my fitness! Yesterday and today I did nothing (well today I walked quite a bit in the mall but that doesn't really count). Tomorrow I'll go and hit some balls at the gym again as well as gym a bit. Loving it!