MAKING THE MOST OF LIFE
by Chanelle Retief (Registered Dietician)
23 May 2018
Many of us often take our healthy running-abled bodies for granted, often only complaining about a slight niggle here and there. But imagine what it feels like running with a disorder that causes not only severe damage to your lungs but also your digestive system. This is the story of Heidi Joubert, who despite having cystic fibrosis, has managed to finish 3 Comrades Marathons, as well as many other marathons and stage trail races.
In August 2014, Chanelle Retief, in-house dietician for Run24 and owner of her own dietetic practice (NutriFundi), ran her first ever marathon. In the process she met Heidi Joubert, a hugely inspirational runner who not only helped Chanelle through her race, but also changed her outlook on life. During the marathon Chanelle heard Heidi coughing a few times. When she asked her whether she was sick, Heidi’s answer that she has cystic fibrosis stunned Chanelle, who knew exactly what the condition entailed and the huge impact it has on exercise.
So for those not sure what exactly cystic fibrosis is here is a simple explanation as provided by the Mayo Clinic: "An inherited disorder that causes severe damage to the lungs, digestive system and other organs in the body. Cystic fibrosis affects the cells that produce mucus, sweat and digestive juices. These secreted fluids are normally thin and slippery. But in people with cystic fibrosis, a defective gene causes the secretions to become sticky and thick. Instead of acting as a lubricant, the secretions plug up tubes, ducts and passageways, especially in the lungs and pancreas."
In order for more sportspeople and those in similar situations to understand this condition and it effects on exercise better, Heidi shared her story in a Q & A with Chanelle.
What does CF mean medically AND what does it mean specifically to you?
CF or Cystic Fibrosis is a genetic disorder that affects the lungs, pancreas, liver, kidneys and intestines. A person with CF has sticky mucus throughout the lungs. There is a deterioration of lung function over the life span of a person affected with CF, normally to a point where a double lung transplant is needed. I have always tried to make the most of life, not worry too much about statistics and I avoid physiotherapy (I figure my running takes care of that).
I cannot remember a time I didn't have CF, so to me it is 100% normal.
When were you diagnosed?
I was diagnosed at 6 weeks old. My parents were told I wouldn't get to reach my 10th birthday, but as medical science has advanced and treatments improved over the years, I'm 35 now and would love to get to another 35.
Have you ever been hospitalized due to your CF?
I am "hospitalized" at least 4 times a year for intravenous antibiotic therapy lasting 14 days at a time. I have a port inserted, so I can give the antibiotics to myself at home, which means I can continue working and of course run.
How did it impact your adult life?
The impact is hardly noticeable to me; I'm used to taking multiple pills, antibiotics and nebulized drugs daily. I have learnt to work around the IV drug therapy; some of the infusions can take up to 3 hours depending of the antibiotic. My husband supports me unconditionally, and makes having CF feel normal. He's learnt to sleep through all my coughing at night!
Tell us about your running journey.
I started running started when I was about 7 years old. Both my parents have run Comrades, with my mom finishing 2nd to Lettie Van Zyl in 1978. I ran cross-country for Northern Transvaal as an U/9. My life has always been active, with lots of camping trips, hikes, bike riding, running and horse riding. Horses still play a big part in my working life. No specific person stands out as an inspiration to me; I guess just always having an active lifestyle helped form the idea that exercise is always a good idea.
I learnt that running helped my lungs get rid of the mucus build up better than any physiotherapy could do, and it was much more fun. Running, without a doubt helps to maintain my lung function, which is the most important key in CF for me.
I became serious about running in 2012, when I ran my first marathon. My husband, who was not a runner when we first met, has run nearly every race and training kilometre with me. Together we have run everything from 5km to the Comrades Marathon as well as stage trail races. My first Comrades will stay with me as my greatest achievement. Standing on that start line not knowing if you will make the 89km journey was terrifying. As it turned out my lungs felt better at the end than my legs. We have since run two more Comrades, many Ultras and marathons, but nothing equals that feeling of running into Kingsmead for the first time.
How do you manage to consume enough calories?
I eat like a horse! I eat as much as I can and as often as I can. CF patients lack digestive enzymes, which make us really inefficient at digesting our food. We do take enzymes to help, but putting on weight is a big challenge. With the training it's even tougher to keep weight on, but luckily for me, I absolutely love chocolate!
Have you ever seen a dietitian?
I have seen various dietitians over the years, and what remains the same is the advice: eat foods high in energy and protein, and eat as much as you possibly can.
What is your biggest accomplishment up to date?
I will have to wait and see what my biggest accomplishment will be. I have an ever-growing bucket list and many more adventures waiting for me. As well as more races to conquer!
How does your journey going forward look?
I am currently trying to improve my time on the half marathon, so I've been doing lots more speed and strength work. I'll be running Mount-Aux-Sources later in the year, a trail run in the Drakensburg if all goes according to plan. I love running in different places and new races are always an adventure. I would love to experience an international marathon too.
Having CF means I have to manage my life a little differently, ensuring that I always eat well, trying to avoid people who might be sick as we are very quick to pick up any type of flu of virus going around, plan my IV infusions around my training and races and managing the day to day challenges of having CF. But life is an adventure, so start living it!
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