• Supporting patients and families living with Cystic Fibrosis, through public awareness, skilled medical professionals, clinics and funding events.

  • Supporting patients and families living with Cystic Fibrosis, through public awareness, skilled medical professionals, clinics and funding events.

My story

By Alice Vogt

Personal Stroies

My name is Alice Vogt (previously Vosloo), and I’m 26 years old. I’m originally from PE, and 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 Dr 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 almost 3 years with my new lungs now, and I have had no rejection, gained lots of weight, working full-time, exercising, and most of all, having lots of fun.

My new lungs have also allowed me to meet the love of my life, and we got married In August 2010, 2 and a half years post-transplant!

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 [javascript protected email address].