Alice Vogt (previously Vosloo) update – 10 years later
I submitted my story to this website 10 years ago (see below), 10 months after my first bi-lateral lung transplant. The past decade has been absolutely brilliant, full of new things, sometimes scary and uncertain… a “bonus” decade! My new lungs allowed me to start my first job, take part in the World Transplant Games three times, winning in total 2 gold, 2 silver and a bronze medal for squash and race-walking. I also met my husband (we started dating when I submitted that previous story actually), and we got married in 2010.
Five years after my transplant, I went into chronic rejection. My lung function started dropping, and I received Photopheresis (ECP) treatment for it in Pretoria, which slowed down the rate of deterioration. Three years after that I decided to stop working, after a health-scare. I also started culturing Pseudomonas again. This wasn’t related to my CF necessarily, as Pseudomonas just tends to like “damaged lungs”, regardless of CF. What did make it a lot easier though was that I still didn’t have the CF mucus in the new lungs, so it wasn’t as bad as pre-transplant infections. It did however become just as resistant, and I was back to nebulising with Colistin. I also saw a biokinetesist twice a week, to keep my strength and muscle-tone as decent as possible.
As treatment options ran out, my Dr and I started talking about re-transplant. It had never been done successfully in SA yet. However, I was a good candidate for it, as all my other organs, as well as my weight were in decent condition. They weren’t the only two factors taken into account though, and I had to undergo the same tests as during a normal transplant work-up AND MORE. I was also worried about medical aid approving a second transplant, due to the fact that there were barely any prior cases of this for them to refer to. Luckily, they came through for me and was back on the waiting-list!
After a year of waiting, that included one traumatic dry-run. I received the call for lungs towards the end of 2017! 9 Years and 10 months after the first transplant, I became the first person in SA to survive a second bi-lateral lung transplant. My recovery, just as the first time around, went really well, with no complications. I regained strength quicker this time, as a result of my body being fitter and fatter this time around. Six weeks after my transplant I was basically back to living life again.
Today it’s 6 months post the second transplant, and things are going fantastically. My medications are still being changed around every now and then, to find the perfect balance, but I feel wonderful… I’ll be taking part in the National Transplant Games in July again for the first time since 2014. We also have some amazing holidays planned. Making up for lost time!
I’m still blogging, so people can find that at http://livinglifebreathlessly.blogspot.co.za/ Three fellow lung transplant recipients and I started a NPO called “Love Life; Gift Life” in 2016. The aim is to increase the amount of organ transplants taking place in SA.
My name is Alice Vosloo, and I’m 24 years old. I was diagnosed with CF at age 2, and had my first serious lung infection at age 6. However I had a relatively normal and ‘healthy’ childhood. I did culture Burkholderia Cepacia (spelling) once when I was about 11 years old, but thankfully I got rid of it after 2 weeks of IV’s and lots of prayer. For the rest Staph was always my friend and I only needed IV’s every 2 years or so. Like most teens with Cf I tried to hide my disease as much as possible, and did all the things the other kids did, as far as possible (including not always nebulising… and often paying for it later).
I first read about lung transplant in 2003 through a CF forum/newsgroup on the internet called Cystic-l. At that time I had no idea if they even do them in SA, and in any case, I was of the opinion that should I EVER need one, it would be in at least 10-15 years or so… the famous CF-denial syndrome…
In January of 2006 I went to Cape Town to visit friends, and upon returning my chest felt tighter than usual. I ignored it for a while, and then went to see my pulmonologist. After various oral antibiotics and sputum test it was clear that I had the dreaded Pseudomonas, that I’ve managed to avoid for so long… IV’s didn’t kill it off, and at the same time became a regular occurrence. The resistance to antibiotics also increased drastically In October of 2006 I realised that I might have to pursue this lung transplant thing (still thinking it’s about 10 years away though…) I asked my Drs (Paul Gebers and Luke Krige) about it, and got referred to Paul Williams in Joburg…
After a serious wake-up call and immediate work-up for transplant, I got listed for a bi-lateral transplant in May of 2007. I was also diagnosed with CF related diabetes at this point, for which I take insulin now. Waiting became my life, esp. as I got more reliant on supplemental oxygen. Not a very pleasant place to be, but hope is a lot better than the alternative. I got THE call after 8 months of being listed, and it rocked my world. The transplant was a massive success, and even though I still take loads of meds, it’s just a bunch of pills… no comparison to hours and hours of nebs and physio and coughing yourself into a semi-comatose state! It’s been 10 months with my new lungs now, and I have had no rejection, gained 10 kilo’s, working full-time, exercising, and most of all, having lots of fun.
I would definitely advise CF’ers in SA to talk about transplant with your Dr, and to contact me should you want to know more. Even if you’re far from reaching that stage, and they may find a cure before you get to that point, it is always good to know what your options are and to prepare for them. Especially where medical aid is concerned. For more info e-mail me at firstname.lastname@example.org.