How My Fight for Antibiotics Reminds Me of ‘Titanic’: Part 1
Columnist Nicole Kohr narrates her lifelong struggles with antibiotics
First in a three-part series.
As a cystic fibrosis (CF) patient, our community’s fight for a pipeline of new antibiotics and the research related to antimicrobial resistance remind me of the musical “Titanic.”
Based on the sinking of the real ship on April 15, 1912, and narrated by different social classes, the story makes it easy to see how a crisis affects people differently. Most importantly, I enjoy how brilliantly the ship represents our society and the time it takes for each group to be affected by a crisis. In this case, I’d like to use the musical telling of the story to illustrate the lack of antibiotics in every CF patient’s toolkit.
Both the musical and film adaptations of “Titanic” opened in 1997. That same year, the Cystic Fibrosis Foundation established the Therapeutics Development Program, which “provides funding during the early phase of drug discovery and development, when the risk for failure is greatest and companies are the most hesitant to invest.”
To put this time frame into perspective, I was diagnosed with cystic fibrosis in 1997. I was 5 years old, and there were only two treatments available for CF patients: Pulmozyme (dornase alfa) and Tobi (tobramycin).
My journey with antibiotics
Since receiving my bilateral lung transplant in June 2019, I have been very outspoken about my relationship with antibiotics. I qualified for transplant under three criteria: having end-stage CF, poor quality of life, and, you guessed it, complete antibiotic resistance. But this was not my first battle with ongoing antibiotic use.
By the time I reached elementary school, I’d already fought Pseudomonas, croup, bronchiolitis, pneumonia, and strep throat. By middle school, I’d battled Stenotrophomonas maltophilia, Candida, E. coli, and Aspergillus. By high school, I’d wrestled with mononucleosis, MRSA, and small intestinal bacterial overgrowth. During my junior year of college, I had Mycobacterium abscessus. As a post-transplant patient, I contracted Epstein-Barr virus. All my childhood infections remain in my sinuses.
I have the pipeline of antibiotics to thank for my 29 years of life. It’s impossible to plan for the long term without making it through the short term first. Unfortunately, my granted wishes came with consequences.
First, I battled allergic reactions. After a few days, every IV antibiotic would cause hives, shakes, swelling — you name it. I had to be desensitized to every medication, a process that required at least 48 hours of in-hospital isolation. Nurses injected a small dose of the antibiotic, then increased the amount gradually until I could tolerate the full dose. This process often included painkillers and antihistamines.
If I managed to overcome the allergic reaction, I then faced long-term side effects. I was often forced to treat one organ and, in doing so, put another at risk. Treating a lung infection with antibiotics, for example, resulted in hearing loss on my left side. I also developed kidney issues, mental health issues, and CF-related diabetes, among other short-term ailments.
Finally, I battled the scariest consequence of all: complete antibiotic resistance. The light at the end of the tunnel grew dimmer every time bloodwork results read “resistant.” When terminal infections began to thrive despite the antibiotics, doctors searched desperately for plans B through Z. All of this happened despite my compliance, and my options became even more limited. My family and I were full of questions, guilt, and fear. Is there something I could’ve done differently? Should I have refused some of the antibiotics early on in my CF journey?
All CF patients require antibiotics at some point. However, this ongoing battle remains out of my control, so the least I can do is advocate for a new pipeline. If history doesn’t have to repeat itself, why watch my cysters and fibros drown?
In my next column, I’ll break down the characters aboard the Titanic, including those who are most likely to be affected by a crisis like antimicrobial resistance.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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