I developed Clostridium difficile in response to being given two antibiotics (known to often induce C. diff) in rapid succession. Having had C. diff before, I knew immediately what was happening, but not a single doctor I asked to test for this infection did–not even the Gastroenterologist who was following me for other unidentified problems. When I had a colonoscopy during this siege, the characteristic raised, yellow C. diff plaques were easily visible to me on the screen. My doctor dismissed them as “bad prep,” stating that the particles were “food debris.” I knew this was incorrect; I had been without food and water for several days.
I then presented myself several times to the hospital Emergency Room with a severely elevated white blood cell count. During my last visit I asked to be seen by a doctor instead of a physician’s assistant, but was told that my symptoms did not warrant the time of a physician. After twelve hours, I was discharged. I called a cab to return home because I was too weak to drive. Once home, I contacted my Internist–who was on call–at 2:00 AM, and insisted that she order a direct admission to the hospital. She asked, “Why would I do this?” I told her that I knew I had C. diff, wanted a consult with my Infectious Disease doctor, and would most likely die if this infection wasn’t diagnosed and treated. She secured an admission for me with a resulting diagnosis of C. diff by noon the next day.
What I could not have anticipated was that as an immunosuppressed kidney transplant patient and having C. diff undiagnosed for four months, I would go on to develop Small Intestinal Bacterial Overgrowth (SIBO). I lost 41 pounds, and was suffering from chronic diarrhea, malabsorption, chronic dehydration, and cachexia. On top of that, all of these symptoms were putting my transplant at risk. I was told by every doctor that I had seen in the Midwest–including the University of Kansas Medical Center, St. Luke’s Hospital (my transplant center), the Cleveland Clinic, and the Mayo Clinic–that they had nothing left to offer me. I had not been diagnosed with SIBO, or even malabsorption. I was told that my death was imminent. They said, “Let us put you in Hospice.” I said, “No.”
In my own research, I found the United States’ leading physician researcher in SIBO, presented my case to him directly, and was given an appointment in a few short weeks. I flew out to LA to meet him. We found that the SIBO had caused intestinal failure. I live now, and for the rest of my life, on Total Parenteral Nutrition (TPN) to maintain my life. This involves the use of a central line through which I infuse sixteen to eighteen hours of IV hydration and nutrition every day. This costs Medicare around $5,000 per month, not to mention the impact of this on my lifestyle. Only about 15,000 people in the United States live on outpatient TPN. It is one of the highest risk treatment modalities known to medicine, with a high rate of central line infections.
My intestinal failure cannot be reversed since I lack an Ileocecal valve from a previous surgery gone wrong, am immunosuppressed, and have so many abdominal anomalies from surgeries. It just isn’t possible to correct what the C. diff caused.
This should never happen to anyone else. Medical professionals know a great deal about containing C. diff in hospital environments. They just don’t follow through with this knowledge, and don’t use proper cleansers, scrupulous hand hygiene, and proper gowning. At the time I was diagnosed with C. diff, it took five hours for me to be transferred to a “no contact” room. During this time, an older lady, who had just finished foot surgery, shared the room with me. I told the nurses to move one of us. They didn’t. This older woman went on to develop C. diff because she was not isolated from me, or simply even told to be aware of possible symptoms upon discharge.
The nurse taking care of me was pregnant. I told her to replace herself so she wouldn’t get infected, too. Doctors and nurses came and went from my room, never putting on booties. So, C. diff spores were consequently tracked throughout the hospital. These spores can be cultured on surfaces for up to 40 days after an infected patient has been in an Emergency Room bay or a hospital room. And we wonder why this infection is so rampant?
I am alive and eager to use my voice to educate other patients, doctors, and the media about how serious C. diff can be, and what far-reaching consequences it can have. I got lucky. I didn’t die. Doctors tell me that I’m “hard to kill.”