Luanne McKinnon Talks Donating to CF Vests Worldwide!
Updated: Feb 18, 2023
WHAT ROLE DID YOUR VEST/NEBULIZER (DONATED EQUIPMENT) PLAY IN YOUR LIFE, IN THE DIFFERENT STAGES OF YOUR LIFE, OR IN YOUR DAILY LIFE?
At age 19, having been diagnosed with CF five years earlier, I went to college in Rome. . I was determined to study in Europe so that meant that my nebulizer would be with me no matter where I was. I had a large and clunky DeVilbiss model, which required sterile water, which I boiled on a little electric coil cooker; electric outlets that could generate the mist for the medication; and, large canisters that would fit into the “engine” of the nebulizer. It weighed over 10 pounds and was around 14 inches tall and 8 inches square. My father chose a heavy-weight duffle bag that the DeVilbiss would fit down into packed with a pair of weekend jeans, maybe a sweater, my camera, and a book or two. I carried it throughout Europe on trains, boats and the occasional airplane. I had a group of electrical outlet adaptors, several for Italy, a couple for France, and still others for Greece, Germany, and the Netherlands. Looking back from almost 45 years later I am very proud of myself for following the nebulizer routine established by my doctors in Dallas. My classmates thought it was cool and supported me.
It is hard being a young person or teenager with CF; but, if you get on board to recognize that the Vest and the nebulizer are part of your team, that they are merely tools to help you stay healthy and alive and they make the journey we CFers are on so much more possible. Once upon a time, there were no nebulizers or Vests or great medicine. So, go easy, be brave, and take care of yourself in all ways. You are precious and you count!
WHAT ADVICE WOULD YOU HAVE FOR AN ADULT OR CHILD USING THE VEST FOR THE FIRST TIME? ANY TIPS OR TRICKS ON IMPLEMENTING IT INTO THEIR SCHEDULE? ANYTHING THAT MADE IT EASIER OR HARDER?
I am almost 67 years old and having been diagnosed with Cystic Fibrosis in 1969, a date before there were any real medications; any truly effective therapies; or, any useful machines or techniques for airway clearance the VEST came to me as a huge opportunity to thrive and stay alive! I was one of the first to receive a Vest when I was in my late 30s. At first the vibrations were strange since they were mechanical. But, the effects were in many ways more powerful than hand percussion. I grew to like the convenience (no appointment needed!); the way my lungs adjusted and were kept healthier by regular use of the Vest; and, the fact that it was mine forever and that I did not have to depend upon others for my care was a bonus. If you are having a hard time adjusting to the Vest, give it time, and like me, I think that you will find the vibrations to be “good vibes” and you can relax into them and let them do the work. Stay happy and think positive thoughts while this CF buddy works for and with you!
WHAT WAS IT LIKE TO DONATE YOUR VEST/NEBULIZER? WHAT KIND OF FEELINGS CAME UP?
I never feel that I can do enough for the children and young adults and adults, like me, suffering from CF who do not have resources or do not live in countries where the disease is not fully understood or fully supported by government or health aid agencies. I stand in solidarity with those who are challenged by the effects of CF. I hope that all of you with Cystic Fibrosis may understand that people far away and from different cultures and traditions share their burden of this disease with you. I am proud that my nebulizers have reached someone in need somewhere in the world.