Cystic Fibrosis

You can find my posts in the cystic fibrosis category here.

My daughter Katie has Cystic Fibrosis.

Cystic Fibrosis, or CF, affects the lungs and the digestive system. CF is the most common, fatal, genetic disease affecting Canadian children and young adults. Forty years ago, most children with CF did not live long enough to attend kindergarten. Today, half of Canadians with CF are expected to live into their 40s and beyond.

While life span has improved for patients with CF, quality of life is still an issue. Daily treatments, medication, clinic visits and health challenges are always present.

For us, when Katie is healthy, we do two treatment sessions a day with her. When she is sick (cold, flu, etc.), we do three or four treatment sessions with her.

Here’s a brief list of Katie’s regular medicine intake and treatment regimen:

• approx 20 pills a day (enzymes – they help Katie digest food);
• vitamin supplements twice a day;
• 2 to 4 Pediasure nutrition supplement drinks each day;
• Nebulizer + medicine – basically, a mist mask that Katie wears twice a day for 15 minutes each time;
• Percussion treatment – 15 to 20 minutes of hitting her chest and back – twice a day;

Plus, the following “specialty items” when she is sick with a cold, flu or other sickness:

• Oral antibiotics;
• Additional medicine in her nebulizer from time to time as her health dictates;
• Additional nebulizer and percussion treatment – typically 3 or 4 treatment sessions a day when she’s sick;

Various resources that we’ve found helpful include:

Websites:

• Canadian Cystic Fibrosis Foundation
  • The primary CF charity in Canada.
• Niagara Chapter – Canadian Cystic Fibrosis Foundation
  • Homepage for the Niagara Chapter of the Canadian Cystic Fibrosis Foundation.
• Hamilton Chapter – Canadian Cystic Fibrosis Foundation
  • Homepage for the Hamilton Chapter of the Canadian Cystic Fibrosis Foundation.
• Cystic Fibrosis Foundation
  • The US counterpart.
• 65 Red Roses– Eva Markvoort’s blog
  • Eva was a tireless and bright CF campaigner. She passed away from Cf-related complications on March 27 2010 at the age of 25. Eva’s double lung transplant was the subject of a documentary entitled 65redroses.
• Run, Sickboy, Run– Ronnie Sharpe’s blog
  • Ronnie has CF. He, and his wife Mandi, both 20-something, blog regularly. They share their experience with Ronnie’s CF, trials, tribulations, treatments, new medical advances, happy days, sad, days, etc.

Books:

• Cystic Fibrosis: A Guide For Patient And Familyby David M. Orenstein
  • This is an excellent medical resource. We have found it to be quite informative.
• Alex, The Life of a Childby Frank Deford
  • A sad memoir of a young girl that died from CF in the early 1980s. Depressing reading, but, it opened my eyes to what we were dealing with when our daughter was first diagnosed with CF.
• The Stones Applaudby Theresa Anne Mullin
  • A brave autobiography of an aspiring journalist. Theresa succumbed to CF in 1991 at 22 years of age. Theresa’s ambition and fearless approach to CF are motivating, despite the sad ending.
• Breathing For A Livingby Laura Rothenberg
  • Laura wrote this memoir as a documentary of her double lung transplant and her recovery, which she went through in her early 20s. Sadly, Laura’s story ended in her early 20s.

Note: I had to order most of the above-mentioned booked from amazon.com (not .ca) because they weren’t available on the Canadian site.

If you have resources to add, please send me an email with the details at toddhdow [at] gmail.com.

Thanks!

Todd