COPD

Updated 17 September 2014

Living with cystic fibrosis

Cheryl Vermeulen has been on antibiotics since she was 10 days old and, by all calculations, shouldn't be alive today.

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Cheryl Vermeulen has been on antibiotics since she was 10 days old and, by all calculations, shouldn't be alive today.


She has cystic fibrosis(CF), a condition that usually claims the life of the sufferer before the age of 40. Yet Cheryl has just turned 41, and has no intention of giving up the daily fight for her life any time soon.

Cheryl looks great: healthy and vibrant. It's easy to forget that beneath her bubbly exterior she's fighting a chronic disease that will one day claim her life. Yet, as she points out in no uncertain terms, the disease doesn't define who she is.

"I didn't have a choice when I was born with CF. But it's my choice how I live with it, and how I incorporate it into my way of life so that I can live as active and full a life as I can. I look, eat and think like most people. In many respects, I'm very much like everyone else.

"The difference is that I suffer from CF. This has influenced and shaped my life in all respects, as my whole life had been formed by the understanding that it would have been short," she writes on her website, www.40peaks.co.za.

It's hard not to be in awe of her as she unfolds the story of her life with its turbulent and, at times, almost unbelievable challenges.

Cheryl Vermeulen at the top of Chapman's Peak with her two dogs. It's the first of many peaks she plans to climb to raise awareness of chronic illness.

On antibiotics from 10 days old
Cheryl's fight to survive started when she was 10 days old, as she began the first of many antibiotic treatments for a lung infection.

A significant part of the daily challenge is that Cheryl, who is unfortunate enough to have most of the complications that accompany this condition, has to deal with a chronic cough, salty skin, difficulty breathing and poor weight gain despite a significant appetite. In addition, the CF affects her digestive system and lungs, she has CF-related diabetes, which requires insulin, sinus problems, a compromised liver, migraines and muscular spasms.

"They say challenges build character, but I'm sure I have character growing out of my ears! I've often asked God to please stop with the lessons," she jokes.

This is one of the reasons it's hard not to feel completely overwhelmed when you're in her company – she experiences all of this and is still never short of a smile or a quirky joke. However, she does note that it's a full-time job looking after herself.

"I can't take symptoms for granted and sweep things under the carpet. I take so many medications I think it's safe to say I'm very well marinated and preserved! My body is fighting infection all the time and every day I'm defying the odds. I'm working every day on buying another day."

A day in Cheryl's life
According to Cheryl, a typical day (when she's healthy) goes something like this:

  • Wake up and have tea.
  • Nebulize medication and clear chest of mucus - this takes 30 to 45 minutes.
  • Inject with insulin.
  • Have breakfast - she's careful of what she eats as her sugar levels spike easily in the morning.
  • Take tablets.

During the day:

  • Eats every two to three hours.
  • Takes digestive enzymes every time she eats to absorb her food.

Evening:

  • "Willie [her husband] and I do chest physiotherapy, which involves various breathing techniques. This stimulates the mucus to move towards the top of the chest so that I'm able to cough it out. This lasts between 30 and 45 minutes and I stop when I'm about to vomit, or I'm too exhausted, or I have chest pain, or I develop bronco spasm and need to use my nebuliser to break the spasm."
  • Inject with insulin before supper.
  • Eat before going to bed ("Otherwise, I'll wake up at 2am needing to eat as my sugar would have dropped").
  • Take medication - "I take between 15 and 20 tablets".
  • "During the night I'll cough: a good night is sleeping through, or waking up at 4am for a brief period. A bad night is waking up every hour and needing to sleep in an upright position. This can influence the following day's energy levels dramatically."

Cheryl also has to constantly monitor any and all physical changes. All day, every day, this is what she's checking:

  • The extent of breathlessness.
  • How much she's coughing and what colour the mucus is.
  • How often in the night she wakes up coughing.
  • Sugar levels.
  • What she's eating and the extent of her appetite.
  • How thirsty she is.
  • What her bowel movements are like, and how flat or bloated her abdomen is.
  • The extent of the muscular pain in her body.
  • The extent of her tiredness.
  • Any symptoms of nausea, headache, chest pain and sore stomach.

"Each of these symptoms influences the level of medication I take and how my body is coping with the level of infection. It will tell me if I'm fine, if I need to increase/decrease my medication, how urgently I need to see the doctor, or if I need to contact my doctors to say that I'll meet them at the hospital."

When she does get an infection, everything changes and it's all about keeping herself medicated.

One step at a time
With so much stacked against her, it's Cheryl's fighting spirit that brings her back from days of feeling really down. "This year has been tough and in April, when I got sick, my lung capacity dropped to 50%. It's now up to 55%, which isn't ideal, but it's much better. It's been a rocky road of treatments all year. One day I was walking a mountain; the next I couldn't walk to the toilet and my lung capacity had dropped 25% overnight, which again proves that there are no guarantees for me. It's scary, and when people ask me what keeps me going, the answer is, 'I don't really know'."

Setting challenges is one way she pushes herself through, one day to the next.

"I also take all the small pleasures I can get. I've learned to appreciate the very small things and then to build on that. Sure, I've often said that I feel like things are too much. Being so sick, I've wondered what it is I'm fighting for. But I love life.

"CF made me the person I am. Sometimes I feel that's a curse; sometimes a blessing. Either way, it's taught me an incredible amount. It's also shaped my life tremendously. There's a lot I would have liked to have done that just wasn't possible. But that's humbled me, and it's been very difficult to accept at times," she says.

Dealing with CF as a teenager
Most CF sufferers are lucky to live beyond their teenage years. As Cheryl points out, it's a devastating disease for a teenager to have to cope with on top of the daily challenge of simply being a teenager. For some, the effort can become too much.

"There are many life phases you go through with CF, and you either deal with it or you don't, but the teen years are the hardest. When you 'deal with it', that means you get through it because you're healthy enough, but if you don't 'deal' with it, and take a dip, that can be life threatening."

She talks about how, as a 15-year-old, she decided to throw caution to the wind and enjoy what little time she thought she had left. Fortunately, she came to her senses and realised she might live past her teenage years and would need not only an education, but also a healthy mind and body.

"One thing I've learned is that it's important for people to let the CF sufferer (or anyone with a chronic condition) have their bad days and feel sorry for themselves. We should be allowed to have that freedom to say, 'You know what, I hate this'."

Surviving one day at a time
Having a healthy mind is one of the things Cheryl says is most important in keeping the body healthy. This involves more than just having a positive attitude. It's about knowing all you can about how much your body can take and what medicine is being put into it.

"I'm the team leader in my life – the doctors, nurses, everyone else is on my team, but I'm the leader. I know that's hard for some doctors [to accept], because we're very demanding patients. But at the end of the day, it's your life. So my advice to everyone with a chronic condition is to become as medically knowledgeable as possible - know absolutely all there is to know about your condition and how it can be treated, what drugs are used, what drugs are best etc," she says.

The 40Peaks challenge
In keeping with her all-or-nothing attitude, Cheryl has set herself a challenge to raise awareness about CF and chronic illnesses by walking 40 mountain peaks – no mean feat for anyone, but a real challenge for someone with CF. She's already conquered her first peak - Chapman's Peak in Cape Town - with the help of her husband Willie and two Belgian shepherds.

She admits it's symbolic. "I'm an ordinary person with a serious health condition. Each day is a challenge and I summit peaks every day - some are harder than others. Reaching the age of 41 is a peak.

"Each time I get seriously ill, I feel I've fallen off the cliff and have to start from the bottom. I have to motivate myself to accept treatment that will make me sick, to work my lungs to get air into them and force myself to get out of bed. Each step to recovery is a peak, from taking a shower without assistance, to walking down the corridor of the hospital, to finally coming home and starting again at life," she says.

Visit www.40peaks.co.za to keep up to date with Cheryl's journey.

- (Amy Henderson, Health24, November 2008)

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