Quality Versus Quantity: CFF's New Regs

The recent changes in regulations set by the CF Foundation regarding contact between people with CF have caused tremendous controversy(http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Germs/WhatYouShouldKnow/Lung-Health-What-You-Should-Know-About-Germs.pdf). Most of the parents and adult children, who grew up before these rules were instituted, vehemently oppose them. Our children grew up going to CF summer camps where they did group treatments with the kids doing aerosols and CPT (pre-vest) together. They coughed all over each other. Bowls of various types of enzymes were set out on the tables where they ate and the kids grabbed the brand and number they needed and swallowed them down.

At CF clinic, the kids played, talked and shared together as the parents discussed various CF topics and how they handled them. Every summer, my husband and I hosted a party for the CF families in our area. We had a picnic, and the kids, parents and doctors all swam together, using the huge home I.V. syringes as squirt guns. The doctors perfected the art of the two-shooter, surfacing from underwater with both hands gripping syringes loaded and aiming at whomever was closest. We all bonded during those times. The kids felt closer to the other kids and learned to see their docs as real people. The parents took advantage of the opportunity to talk over questions with one another and compare strategies on getting kiddos to do treatments or take their enzymes. And we laughed. Perhaps the laughing was the best and most healing aspect of those camps and summer gatherings. The kids laughed, and moms and dads laughed. Science has proven the healing value of laughter, and these get-togethers created opportunities for ample giggles, chuckles and guffaws. Those times served as a way to lighten the heaviness of thoughts and feelings associated with CF. We all needed that. We still do.

When Holly was diagnosed at seven-and-a-half months, one of the first pieces of advice her CF specialist gave us was to always choose quality over quantity. This was in the late 70s when the average life expectancy was only about 18, and he said, “I’d rather see her live 18 really good, fulfilling years than 21 sheltered, lonely years.” Those words guided our care of her throughout her life, and she has lived well because of it. Yes, she has limitations, but she has really lived and loved without regret. She has lost loved friends who had CF, but she has also celebrated the friendship and kinship she has felt honored to share with them.

She can tell you many colorful stories about her time with her CF friends in the hospital: like rollerblading down the hallways with a friend. When they were reprimanded by a security guard, they simply moved to the parking lot. Not to mention the time she snuck a buddy out to Denny’s. That was the night we got a call in the middle of the night being questioned by the nurses who wondered if we knew where our daughter was. Ahhhhh. I’ve always said that, “she may survive CF, but I’m pretty sure it’s going to kill me!”

She has lived life her way and been better for it. She believes, as most of us whose children grew up in the era before the strict new regulations, do that the value of the kinship and camaraderie that results from time spent with others with CF far outweighs any risks that their time together might bring. Every parent and adult with CF has to make his or her own decisions about contact with others with CF, and the Foundation has imposed certain rules that must be followed at CF events that, I believe, are to the detriment of the people who should benefit the most from those events.

Some people, like Holly, will continue to meet for lunch and visit, wearing masks, in each other’s hospital rooms. They value their time together and the encouragement they gain from it too much to be overly concerned about cross-contamination.

As I said, everyone must make his or her own decision on the subject. And, as Holly would say, “Thus endeth the rant.”