Jess lives in NSW with her husband James and their two furbabies. Jess shares her CF story and her current journey of trying for a baby. Jess talks about her challenges with Burkholderia cepacia, and her unwaivering determination in life.
At 13:53 on Wednesday 5 October 1994, exactly two weeks late (& never on time again) my mum and dad welcomed me, Jess, into the world. Full of excitement and happiness they were over the moon; little did they know their little bundle of joy was going to tip their world upside down.
Through the heel prick and sweat test, I was diagnosed with CF. 1 x DF508 gene and 1 x V520f gene.
Not much was known about CF back then, and with so much uncertainty around what was going to happen my life expectancy was looking grim.
BUT, that wasn’t going to stop us. We moved from Sydney to the sunny Central Coast as a kid, because mum and dad wanted me to live my best life. Within weeks, I was dancing, playing netball and soccer, swimming, doing nippers, and athletics. I was a socialite, overly energetic, and constantly talking. I was making up dances to show my parents in the living room, giggling myself silly on the trampoline and running amuck, as any young girl did.
I hated my physio, hated my meds, hated knowing that I was supposed to be the sick kid, wrapped up in cotton wool- so I did everything in my power to prove them wrong!
Everything was going so well. But at 18, things hit the fan. I got kicked out of the paediatric hospital (because I was an adult) and for the first time, had a hospital admission for my CF. I was a complete mess- I had 18 years of being healthy, fun, and active and within a few months of being in an adult hospital, my lung function had dropped and I was diagnosed with Burkholderia cepacia. They gave me 6 months to live. That was 7 years ago…
This is my story. I’m sharing this with you, to show people that life will always throw curveballs but what truly matters is you fight through it! Things will get better sooner or later.
I am now married, have two furbabies, and trying to have a baby.
The dogs were the easy part. The human child seems to be a little bit harder.
Once James and I got engaged, getting tested to ensure he wasn’t a carrier was a high priority. We had decided if he did carry the CF gene we wouldn’t conceive naturally. I would never want my child to experience what I had to, and that was a decision James accepted. It was just a blood test, but that 16 week wait for the results felt like a lifetime. Luckily, he was all clear, so bring on the baby-making.
Due to my cepacia, I have been classified as high-risk pregnancy. They figure because I have such a nasty bug on top of my CF, fighting off infections whilst pregnant may cause some problems, so I got referred to a women’s health and complex Pre-conception clinic.
They went through some pretty scary statistics and James and I again had to talk about our options and choose whether we wanted to take the risk.
They reiterated that pregnancy may be hard, I’d more than likely take a hit to my lung function and would have to learn to be without some of my medication. They also spoke with James to say that he had to know that having CF does mean I have a lower life expectancy and that he would have to consider raising a child as a single father. That was hard to hear, and it broke me. I sat in the appointment sobbing. But once again, James said he was supportive of our decision to bring a child into this world. We again spoke about the genetic side of it. Obviously, the testing, doesn’t test every CF gene so there is still a chance James might be a carrier, but we thought we’ve defied all the odds for so long, so let’s give it a go.
It’s been 7 months and we have not had any success naturally. We now have to talk to a fertility specialist. They were worried that if I hadn’t conceived within 6 months I may need some extra help, so we’re going down that path, but in no way are we giving up.
Like so many CF’ers I have had a rough life and have thought multiple times that it would never get better. As I get older, I’ve learned that the struggle I go through makes me who I am. I am a stronger person because of what I went through and still go through. I will only get stronger from the struggles and the curveballs the world constantly throws at you and I will not let CF win. It definitely hasn’t been easy, but I have the life I planned for so long & James and I are so excited to see what life has installed for us.
If you would like to share your story, please contact us at admin@cfcc.org.au. We’d love to hear from you and so would our readers.
This story was published in April, 2021.
