Living With C diff: ‘Forever Grateful’
This is part of an occasional series with members of the Peggy Lillis Foundation. Here is an opportunity to hear about people’s experiences, lessons learned, and the new treatments that can lead to hope and not the hopelessness people have been living with during their ordeals.
Pam McCollister’s multiple bouts of C diff (CDI) completely changed her life. She not only suffered numerous recurrences of the acute infection, but she has dealt with the lingering physical effects as well as witnessing her children’s mental anguish in seeing their mother repeatedly sickened and hospitalized from it.
To read more about her experience with the infection and treatment, watch the first portion of the interview here.
Although C diff has left a permanent mark on her life, McCollister has found friendship and a community through the C diff patient advocacy organization, the Peggy Lillis Foundation. As a member of the organization’s advocates council, she has found the experience to be invaluable, starting with the peer support.
“The advocates council has been life changing,” said McCollister. “The people that I've had the pleasure of getting to know and work side by side with; I definitely consider family with the bond that we have. Because we've all experienced this illness, either as a caregiver or the one actually affected by this, it is something that I am forever grateful for.”
According to the foundation’s website, the “advocates engage in a wide range of activities to educate the public, support and empower CDI sufferers and caregivers, lobby for CDI-related laws and regulations at the state and federal level, and help build a powerful and sustainable movement.”
She explains the council has helped her to heal and grow. “The advocates council opens doors for so many different avenues. And, so I've been blessed to be a part of that.”
As part of being on the council, McCollister has connected with the Orgeon Health Authority which is made up of doctors, epidemiologists, and scientists who help create C diff care guidelines for hospitals, private practices, and short and long term care facilities. “The advocates council has given me the opportunity to be the first patient that has been invited and accepted in [the authority] so that they can hear firsthand from a patient, what it's like, when you're sick.”
McCollister will also be recognized with the Advocate Award at this year’s foundation gala.
“When Christian told me, I just started crying to be honored by them…I don't feel like I deserve it—honestly,” McCollister stated. “It's a huge honor. To honor all of the individuals that have lost their lives to C diff, that's why, I do the extra work that I do—to give the people that have lost their lives to this horrible, horrible illness a voice. It truly means the world.”
Contagion is working with the Peggy Lillis Foundation on this series and we will be posting more conversations with people about their lives with C diff.
