“Hello. My name is Brad Dell, and I'm a gambler.” If this were a Gamblers Anonymous meeting, it could be filled with most of the cystic fibrosis community.
In the case of the CF community, we don't pursue the gambling; it pursues us. It's high-stakes risks: livers, kidneys, appetites, hearing, emotional stability, our lives. Instead of poker chips, we stack intravenous (IV) antibiotic bags on a pole. Instead of throwing the dice, we toss powdered tablets into our mouths.
And, then, we wait -- weeks at a time -- for the dice to land. Will the antibiotics fix problems or cause them? And, just as an antidote for snake venom is more snake venom, antibiotics are often necessary to undo the effects of other drugs. Several times, I took an antibiotic to treat a Clostridium difficile infection that was caused by taking an antibiotic to treat a different opportunistic infection.
The antibiotic cycle wasn't so harsh when I was younger. I took drugs that caused nausea or dizziness at the worst. The medicines worked like miraculous elixirs, soothing coughs and melting gooey globs of mucus within days. But those tricks grew old and the bacteria developed better defenses. The Pseudomonas, Achromobacter, and Stenotrophomonas in my lungs were joined by their fiercest champion: Mycobacterium abscessus (M. abscessus). It was highly resistant to antibiotics, requiring up to four antibiotics and a minimum 18 months of treatment to suppress. If Pseudomonas and Achromobacter use iron handheld shields, M. abscessus has force fields. I treated it three times (three and a half years of IV and oral antibiotics total) and barely dented it. The long-dreaded phrase dripped from my doctors' lips: “We're running out of options."
We unleashed an arsenal of additional drugs; all stops pulled. “The big guns,” as my hospital doctors militaristically dubbed them. We were fighting scorched earth tactics with napalm. The results were uncontrollable, and the victories were often Pyrrhic. “Antibiotic” means “life-killing” when translated from Greek. The antibiotics didn't discriminate between good and bad life; they damaged both the bacteria and my invaded body.
Tygacil (tigecycline) weakened my leg muscles and brought me to my knees over the toilet bowl for hours as I vomited. Amikacin gave me two new conditions: total deafness and kidney disease. Levaquin (levofloxacin) made me think vortex-dark suicidal thoughts. I moaned for the doctors to take me off, “Anything but this, anything but this.” The doctors presented more grave lab results and introduced new antibiotics to my caustic cocktail: “Just one more, just one more.”
After 23 years of living with cystic fibrosis, what “got me” in the end was a blood infection in the port-a-cath I used -- ironically -- to deliver antibiotics. My team turned to the most dramatic of strategies in January 2017: my bacteria-ravaged lungs were removed from my chest and replaced with a donor's beautiful, pink, healthy lungs. My old lungs, and their bacteria, probably sit in a jar in a laboratory now; may they rest in pieces.
I spend my days patching up the damage from a lifetime of antibiotics. I've gotten cochlear implants so I can hear again. I'm on fewer medications to allow my scarred kidneys to heal from decades of filtering life-killers. I've been going to the gym and on hikes to regain the leg muscles I lost. I've been enjoying food without vomiting. I've been seeking therapy to heal the anxiety and trauma that came with the unwanted side effects.
Despite the damage antibiotics have caused, I recognize I might not have made it to my 20s if it wasn't for them. The side effects can be awful, but the bacteria are even more so. If I didn't have antibiotics backing my immune system in its fight, the bacteria would have torn right through me.
CF is fought with imperfect weapons, but at least we have those weapons. I might have to fight new infections one day because the steroids I take post-transplant to prevent rejection leave my immune system crippled. This time, the antibiotics will be the first line of defense. But, my body will be stronger than before. And, hopefully, so will the drugs.
There is a cornucopia of drugs and therapies in the development pipeline right now that have potential to eliminate antibiotic resistance by halting or piercing bacterial biofilm formation (the “force fields” of bacteria). Things like nitric oxide, Lynovex, and gallium. Funding drug trials are gambles in themselves, but these gambles could save entire generations of CF patients.
