Guest Blog - Peggy Lillis Foundation Fights C. diff

Peggy’s Story & Gala Sponsorship

Christian John Lillis and Liam Lillis, Co-founders, Peggy Lillis Foundation
November 8, 2016

On October 21, 2016, the Peggy Lillis Foundation (PLF) held our Seventh Annual FIGHT C. DIFF Gala. We were proud to have Prebiotin as a Gala sponsor and supporter of our work building a nationwide Clostridium difficile (C. diff) awareness movement by educating the public, empowering advocates, and shaping policy. As a producer of prebiotics, Prebiotin knows firsthand the importance of balanced gut bacteria.

“We envision a world where C. diff is rare, treatable and survivable.”– Peggy Lillis Foundation Vision

Many cases of C. diff, including our mother Peggy’s, are precipitated by using antibiotics, which often deplete the good gut bacteria along with the bad. This dysbiosis allows infections like C. diff to take over. That’s why we share Prebiotin’s deep belief that a healthy gut microbiome is a vital part of good health.

PLF was founded in response to the untimely death of our mother, Peggy Lillis, a 56-year-old Brooklyn kindergarten teacher. On Tuesday, April 13, 2010, Mom had a routine root canal and was prescribed the antibiotic Clindamycin to treat an abscess. She felt fine the following day but became increasingly sick as the week continued. Thinking she had contracted a stomach bug, she stayed home from work (which she almost never did) and took a prescription-strength anti-diarrheal medicine at the advice of her doctor.

We later found out that is one of the worst medications one can take when they have C. diff.

The following Tuesday, Mom was still ill and getting worse. Instead of heading to a doctor’s appointment, we insisted on calling an ambulance and going straight to the hospital. The paramedics first found that Mom’s blood pressure was dangerously low, and then discovered at the hospital that she had a massive infection—C. diff.

Despite telling us that she was fine, Mom was in septic shock. Her doctors started a central line for fluids and more antibiotics and performed and scheduled more tests. Mom also had to be sedated and intubated to make sure her airway wasn’t compromised during any procedures.

“This infection was killing hundreds of Americans each day—29,000 per year—and yet so few people had even heard of it.”- Christian John Lillis

The doctors continued treating her with IV antibiotics and other drugs, and told us that if she didn’t respond by morning they would have to remove her colon “in an attempt to save her life.” It was at this point that we realized that what they initially thought was the flu just four days ago, could ultimately cost Mom her life.

At 6 AM the next day, the doctors told us to get back to the hospital. Mom hadn’t responded to the drugs and surgery was necessary. Mom was so ill that her doctor was worried she wouldn’t survive the surgery, but at the same time would very likely die from sepsis without it. We consented to the surgery, and for several hours afterward, Mom seemed to improve. But around 4 PM, her vital signs started to deteriorate. Her doctors put her on 100% oxygen and additional drugs to support her blood pressure, but she continued to decline.

At 7:20 PM that night, the ICU doctor informed us that Mom had passed.

In the days and weeks after Mom died, we wondered, “How did this happen?” We began researching C. diff and simply couldn’t find any resources that were accessible to regular people; all that we found was written by and for doctors and researchers.

This infection was killing hundreds of Americans each day—29,000 per year—and yet so few people had even heard of it. Worst of all: it was preventable. If more information was available about identifying the symptoms of and treating C. diff infections, Mom—and so many others—could have been saved.

We were determined that our mother’s death not be in vain. With the help of our family and friends, we formed the Peggy Lillis Foundation as a way to take our grief, our deep love for our mother, and our anger to draw a line in the sand and say, “Not allowed.” We would not sit back while thousands of people died from a preventable disease.

Christian, Peggy and Liam Lillis

Six years later, the Peggy Lillis Foundation has made tremendous strides in raising awareness about C. diff, empowering C. diff survivors and their loved ones, and shaping healthcare policy. It has grown into a leading and trusted resource for those looking for information about C. diff.

In just the past year, PLF has participated in:

• The Consumers Union’s Patient Safety Summit and Lobby Day in Washington, DC
• A Summit at the Centers for Disease Control and Prevention focused on the prevention of antibiotic resistant bacterial infections and sepsis
• The June 2016 public meeting of the President’s Advisory Council on Combating Antibiotic Resistant Bacteria
• The development and launch of the National Quality Forum’s Antibiotic Stewardship Task Force playbook on new participation requirements for Medicaid and Medicare

“According to a survey done last year, 77 percent of Americans have never heard of C. diff. It is impossible to prevent a disease you don’t know exists.” – Christian John Lillis

Finally, PLF has greatly extended its online presence and reach. Web traffic to www.peggyfoundation.org has increased by more than 250%, and the site has reached more than 65,000 people worldwide with valuable information about C. diff since January 2016.

While the Peggy Lillis Foundation is proud of its progress, we know that there is still much work to be done. According to a survey done last year, 77 percent of Americans have never heard of C. diff. It is impossible to prevent a disease you don’t know exists.

But with education and advocacy surrounding awareness of symptoms and treatment, responsible antibiotic use, exceptional hand hygiene, and steps to maintain a robust gut microbiome, we know that C. diff infections can be prevented and lives saved.

Please watch “The Story of Peggy Lillis: The Other Side of Antibiotics”– from Christian Lillis, Executive Director, Peggy Lillis Foundation

We are pleased to partner with an innovative and forward-thinking business like Prebiotin, as we continue working toward our vision of a world where C. diff infections are rare, treatable, and survivable..

A Cautionary Tale - A Testimonial Regarding C-difficile, Fecal Transplant, and Prebiotin:

Our father, Donald D. Lockhart, was recovering from a stroke with early onset dementia in April of 2015. He then had an abscessed tooth removed followed by heavy doses of antibiotic. He was transferred to a skilled nursing facility due to his physical weakness. He then developed diarrhea, which we thought was to be expected with such strong antibiotics.

However, he then spiked a 102-degree temperature and was taken to the ER, revealing pneumonia and C. diff, leading to A-fib. We had never heard of C. diff before, but now know that it is a virulent bacterial infection that kills 29,000 people a year.

It is often found in healthcare facilities. In this case, the nursing facility was aware of the fact that they had patients with C. diff, but had not isolated them to their rooms.

We took our father to numerous follow-ups with an infectious disease doctor who finally suggested a specialist who performed Fecal Microbiota Transplants (FMT). This sounded crazy to us!

At this point, however, we realized that the current treatment would never work. For six months his treatment consisted of more antibiotics (this time we added PRObiotics) but every time our father finished the antibiotics, the C. diff would return in three days. Now we were ready to visit the recommended fecal transplant doctor!

The physician in the Ft. Worth area started our Dad on Prebiotin, along with then performing the fecal transplant procedure in November 2015.

There was a point before the procedure when I believed that C. diff would end our father’s life.

Between the procedure and we believe due to the support of Prebiotin, our father’s C. diff was CURED!! We then continued Prebiotin as part of his daily supplements until his passing in February, 2016.

His physician’s recommendations were: “Never probiotics — always prebiotics!” Prebiotin is in his written treatment handouts.

Thank you Prebiotin for being a part of our father’s feeling so much better the last few months of his life.