My wife and I live in the midst of a full-blown hot zone. This may sound a tad dramatic, but it’s true. When my father was diagnosed with terminal cancer, he spent quite a bit of time in the hospital and, subsequently, in a skilled nursing facility for rehabilitation. Somewhere along the way, he picked up Clostridium difficile, or – as we’ve come to know it – c-diff.
toxic megacolon. People can, and have, died from c-diff. It’s not a germ you want to fuck around with.
The bacteria is most commonly acquired in hospitals and nursing homes. Someone will touch an object that has the bacteria on it, not wash their hands, and then transfer it to another patient’s room; that patient, in turn, gets it on his hands and ingests it while eating food. Once infected, it is extremely hard to fight (difficile is actually Latin for "difficult") .
It’s been nearly six months since my father began his treatment for it. While he was in the hospital, his doctor told us about the infection and said he was prescribing Vancomyacin, which he described as "The Chuck Norris of Antibiotics". In pill form, it is insanely expensive and, in liquid form, insanely difficult to find. But we expected Chuck Norris to wipe out the infection, so my father could go about the business of building his strength back. Chuck Norris got his ass kicked when a round of treatments proved futile. So they put my Dad on a stronger dose and increased both the amount of time and frequency with which he took it. Again with little result. The Vanco seems to hold the worst of the infection at bay, but never truly gets rid of it. Within five days of finishing a round, the c-diff was invariably back When we complained that they simply kept re-prescribing medicine that wasn't working, they began trying different antibiotic cocktails. He’s had Vanco with Flagyl, Vanco with Cipro, Vanco with Flagyl and Cholestyramine. We thought we’d made some headway this last round by adding over-the-counter probiotics into the mix. His stool became solid, lost the c-diff smell, and his strength and spirits skyrocketed. But after five days of being off the antibiotics, it came back with a vengeance.
The day before he was sitting up in bed, laughing as he watched Family Guy, and had walked ten feet during his physical therapy (these were the first steps he’d taken for over half a year). The infection came back that night and by the next day he didn't have enough strength to roll over in bed when I was changing him. We've called in a gastroenterologist and an infectious disease specialist. Currently, we’re in the process of trying yet another drug called Difficid, this one even rarer than Vanco. What I’ve read about Difficid sounds promising; the only thing keeping it from being the frontline treatment against c-diff is the cost. Because of this, patients must try and fail at least two other antibiotics. And that’s only if you can find a doctor who has heard of it or takes you seriously when you say there's a treatment option other than Vancomyacin. If the Difficid also fails, however, our last option will be a fecal transplant (yes, there really is such a thing).
The reason I’m sharing all of this is that people need to know it’s out there. People need to know how to prevent it from spreading. According to the CDC, 14,000 Americans die every year from C-diff and 337,000 people are hospitalized because of it. Unlike other healthcare related infections that have been declining over the past decade, c-diff infection rates and deaths climbed to historic heights and "pose threats across medical facilities." Despite their outreach programs, my wife and I know more about this bacteria than most medical workers we've come into contact with. Which is scary. The only thing that will kill this bug is bleach or washing your hands with warm, soapy water. Alcohol-based disinfectants do no good. Yet you wouldn't believe the number of nurses, doctors, and therapists who give us a condescending look when we tell them to wash their hands after dealing with my father. "It’s okay." They say. "I used my hand sanitizer." No, it is not okay. It is far from okay. The hand sanitizer that so many healthcare workers depend upon does nothing against this bug. You could squeeze an entire bottle on your hands and still transfer the bacteria to the next patient. And they should already know this; the CDC has aggressively educated healthcare workers and facilities about this problem.
It should be obvious from what I've written that this infection has life-altering impacts on the patient. But what people don’t realize is the effects it has on caregivers as well. Someone must be with my Dad twenty-four hours a day, seven days a week. My wife and I used to have regular date nights and would take occasional overnight trips to visit relatives, attend conventions to support my writing, or just explore new areas. Now we only spend time outside the house together in two hour increments... and only when our son is able to stay with my Dad. Even when I’m away from the house, I occasionally think I detect whiffs of that c-diff odor. It’s like the ghost of a smell, haunting the borderlands of detection, and has killed my appetite on more than one occasion. There’s financial strain involved, too, but I’m not just talking about prescriptions, ER visits, admissions,and office visit copays. We buy adult diapers, bed pads, disposable gloves, bleach wipes, hand soap, probiotic yogurt, and wet wipes in bulk… and still go through them within a month’s time. The financial constraints, however, are actually the least of our concerns.
More pressing is the fear of spreading this germ even further. We don surgical gloves when dealing with my father and immediately wash our hands upon leaving his room. We bleach everything on a daily basis: bed rails, bedside table, lunch trays, his wheelchair, portable urinal, trashcan, checkbook, the telephone… anything he comes into contact with gets a thorough rub down. On top of this, we routinely steal the ink pens receptionists give for completing paperwork in waiting rooms; if we returned them, they would simply be put back into the basket and could potentially spread the infection to other unsuspecting patients simply because my Dad signed his name on a release form.
And then there's also the fear. We worry about having guests over, we worry about spreading it to friends, family, and co-workers. We worry that we, ourselves, may already have this bacteria in our tracts, just waiting for our healthy flora to be compromised. We worry that if they knew what we've been dealing with, friends will avoid us for fear of contamination. We are not germaphobic, but we are vigilant. We do not take this lightly and take every precaution to ensure that the bacteria doesn't leave my father's room, much less our home.
Sometimes it all gets a bit overwhelming; sometimes you feel like a leper. Sometimes you get tired. Most people look forward to sleeping in on the weekends, but that's a luxury we rarely have. We have to take turns to ensure that someone is awake to prepare my father's breakfast, give him his meds, clean him, and so on. But you have no choice. You do everything within your power to keep the bacteria from spreading, including shaming those who should know better. I would not wish c-diff on my worst enemy, much less an unwary stranger. Nobody should have to go through this. Nobody should have to endure the pain and indignity of this infection. No one should have to watch someone they love suffer and weaken as the antibiotic-resistant germ grows stronger.
It takes a toll, but you find the strength and push on. You have to. You limit your tears and frustration to two minutes, tops; then you take a deep breath, reach deep into your inner reserves, and muster the strength to do what needs to be done. You change the diapers, bag the soiled linens, double bag the garbage, and do things you never thought you’d be able to do. You have to. Because you love this person and would want someone to treat you with the same dignity and respect. because you want them to be well again.
That, my friend, is a first hand account of life within a hot zone. And it only scratches the surface….