How Jess got her groove back
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I’m Jess Sykes, a Riverland born and bred chick, and I’m thirty! Six years ago, I received a lung transplant which whisked me away from the edge of death, and I’ve been doing so much living since!
I’m a total book nerd, and currently writing my own two novels, one of which is a fairytale fantasy type twist on CF, because who the hell wants to read a boring autobiography about the colour of my mucus? Alas, it may never be published, as most of my time is consumed by owning and running a niche business in car restoration decals, pinstripes, and graphics, with my partner in crime!
I love going out 4x4ing, adventures, hanging with my doggos, running and keeping fit, obsessing over my hair, trying to garden, music, singing, theatre, and currently restoring a 1976 Holden Sandman Panelvan with my fiancé. ⠀⠀⠀⠀⠀⠀
Before my transplant, as a rural outdoorsy kid, I was extremely active. My parents were conscious of the risks of cross infection long before it became a thing, so I was relatively healthy. It was a fungal infection in my lungs which wreaked havoc on my inflammatory markers for a couple years, and this is when my health began changing in my teens. Oh, and you know, becoming a teen with “other” interests away from physio and puffers! My early twenties, I was diligent AF, but there was a slow decline in my lung health and weight, due to my right lung collapsing, and then deciding to do it again, and again. This finally saw me stopping work and nearly all social interactions to simply keep myself alive. In 2014, both my lungs collapsed, and to give you the super short of it, I was flown to Melbourne, where I signed my consent to go onto the transplant waiting list, and received amazing new lungs two days later!
Now since I’ve had my transplant, everything is AWESOME!!! No, seriously, I have been so lucky to go from end-stage CF, collapsed lungs, too malnourished and weak to move around a bed, unable to eat, on constant PEG feeds, unable to string a three-word sentence together for lack of air, and unable to lie down from the pain and fear of never rising again, to singing! Yes, SINGING! Pre-transplant, my world would shatter if my lung function dropped .25%. Now it is over 100% FEV1 every day of the week! I’m so fit and healthy, in a way totally different to before. I don’t have to worry so much about weight, just my sugars, and keeping muscle on, being on prednisolone for life as an anti-rejection medication. I couldn’t even tell you where my nebulizer is!
Before I had my transplant I wanted people to understand I had weight issues due to the CF malabsorption from a dodgy pancreas, and excessive amount of energy my body was using to breathe. I’d consume up to 4000 calories a day from meals and PEG feeds, but because I’d burn so much up, and had the unfortunate issue of coughing until I’d throw up too. I had to deal with not just the wrist grabbing and exclamations of, “you are so skinny”, but people assuming I was bulimic. It was incredibly disheartening during a tough point in my life. I want people to understand, just like being called “fat”, being called “skinny”, is just as demoralizing. People with CF work incredibly hard to eat well to nourish their bodies.
Now I’ve had my transplant the main thing I want people to know is that I still have CF! Yes, we are like an upgraded version of ourselves, and well, unstoppable. But! Behind the scenes, there is still a lot going on. We still have sinus, digestive and weight gain issues. Some of us have CF related Diabetes, and others also have Osteoporosis to deal with every day. Granted, unless I stir up my stomach by “gutsing” out on foods I shouldn’t! Even I forget I still have CF! I’m just a diabetic who had a transplant, right?
Before my transplant the most challenging thing was trying to hold onto a social life while dodging around everyone who likes to share around their colds, or the flu. The feeling of letting others down because you physically, and sometimes mentally, cannot do something, or go somewhere. Dragging an oxygen tank around the countryside! Knowing your condition is hurting those you love, and who love you. The hardest things for me were seeing my border collie watching through the fence as I was whisked away in an ambulance, and my close family having to watch me essentially dying in ICU. I of course, was hell bent on not doing any of that, because I had a dog to get home to!
Post-transplant it’s still really challenging trying to hold a social life together while dodging around anyone with a cold in public! Thankfully, I’ve got a beautiful group of understanding and respectful friends, who will give me the heads up if they are unwell, and generally stay away from others if they are contagious. The baby dilemma. To start a family, or to not start a family? I’ve been battling this one for five years, but the answer, well that is another story.
Cystic Fibrosis is an incredibly lonely disease. The CFSA community, especially now social media is such a large part of our lives, has helped to close the gap between kids and adults with CF, and their families. We have a safe space to advocate, advise, share our stories, and share in ours and others’ triumphs, or hard days. CF is not a community as such, we are a family.