C Diff Awareness

I would like for everyone who has lived with this condition or has known someone who has lived with this to sign the petition.  Here is my story:

I am a 30-year-old female who has suffered from a Clostridium difficile (C diff) infection for over a year and a half. I have also since been diagnosed with Crohn’s disease and gluten and egg white allergies, and have lived with asthma (an autoimmune disease) since I was three. The physical, social and emotional effects of a C diff infection (and the ancillary diseases and conditions it can cause) are beyond comprehension for anyone who has not had to live with it. Before I contracted C diff, I worked very hard to make a substantial salary for the industry I’m in. I’ve held numerous publishing positions, was invited to be a member of Who's Who and to speak about my profession at a university, and even published three fiction novels as well as various freelance pieces. I went on to obtain my Master’s degree, marry my best friend, and we have two beautiful children. I had always considered myself to be very blessed—happy and healthy, felt on top of the world. But, after contracting C diff, which I believe was due to an unsanitary hospital stay while delivering my son, my life quickly spiraled out of control. I had major gastrointestinal issues I initially tried to ignore and “power through”. I was in and out of the ER multiple times, but was always just rehydrated and sent home. Eventually, when I was extremely dehydrated and feeling delirious, I saw a psychiatrist who diagnosed me with an anxiety disorder. I also saw a neurologist because my hands kept locking up. Neither diagnosis nor the medications prescribed helped at all. Eventually, I wrote the whole thing off as IBS, or a never-ending stomach flu, or something else I couldn’t control (systemic Candida, perhaps?) and attempted to continue to live my life as normally as possible, hiding my misery as best I could—until it got really bad and I couldn’t any longer. That’s when my supervisor knocked on my cubicle desk and with genuine concern told me to go home and take care of myself, however long it took. At first, I told him I didn’t need to. I don’t just give up. Honestly, I despise showing weakness. But, later that afternoon, I was back in the bathroom throwing up. Actually, I was so weak by that point I fell asleep on the toilet for an hour. That’s when I finally realized the game was over, he was right, and I had to do something more about it—I had to get a definitive answer. I took a month-long medical leave. It was one of the toughest things I’d ever had to do—I felt worthless. Most days, I laid in bed unable to move. I only got up to use the bathroom. I couldn’t eat and tried my damnedest just to keep water down to stay hydrated. My hair was falling out and I couldn’t bear to look at myself in the mirror. I had yet to realize what was happening to me, and despite seeing several doctors, still no one had any answers.

When the month was up, I received a note from my primary care doctor indicating it was okay for me to return to work even though I didn’t feel any better. I knew I had to, so I wouldn’t lose my job. So, I put on a happy face, returned, and followed the motions. In the meantime, I had a colonoscopy and they found erosions in my intestines, but told me I just had acid reflux, they were nothing to worry about, and I needed an OTC medication to treat it. I bought one, but it didn’t help. It wasn’t for another two months that I got a call letting me know I had C diff. By that point, I had lost 20 lbs, my blood pressure was 189/108, I was having terrible hot flashes, chills, and headaches, and my hair was falling out in chunks. The puking and diarrhea were just “a normal part of my life” and, from the dehydration, my gait was severely off making it difficult to walk. I was in two weddings and couldn’t even wear heels (it was embarrassing) and I literally thought I might harm someone every time I drove. I was first prescribed Flagyl, which made the nausea completely unbearable. So, I called my primary to tell him that my body wasn’t tolerating the drug and that I thought I needed to go back to the hospital. He told me to just continue on it for a few more days and that I would adjust to its effects. Then, by the grace of God, my GI doctor just happened to call me about ten minutes after that conversation to follow up with me post-procedure. I relayed the same symptoms to him and he immediately prescribed me Vancomycin capsules and told me to go to the hospital. I left work, packed a bag and was sent into isolation. In the meantime, I discovered my insurance wouldn’t cover the capsules—they wanted nearly $1500. But, I was getting it in liquid form at the hospital, which was covered as part of my visit. Everyone who came into my room wore yellow suits and masks, and had to wash their hands with special soap. I was on a continuous IV for fluid and potassium replenishment. My bed constantly moved, because I was sent to an area where people often stay for a while and can get bed sores, so I didn’t get any sleep. And, I was seen by a total of nine doctors before I was allowed to go home two and a half days later, still testing positive for C diff.

Luckily, the doctors were able to give me liquid Vanco formulated at the hospital pharmacy so my insurance would cover it, and I took that for another eight days. By my last dose, I was feeling really good. It was Memorial Day weekend and we had family and friends over to celebrate my daughter’s birthday. I felt like I was given a second chance at life.

Then it came back.

I was off the medication for three days and the C diff infection returned, worse than ever. My GI doctor gave me another round of Vanco, telling me to take it for 45 days as well as Pentasa for the Crohn’s I also developed. I am still on both medications, and am truly exhausted—not only from the physical symptoms, but from the mental frustration. I will likely lose my job as my health continues to deteriorate. My whole family is suffering. I tried to report my condition to the state, but was told it wasn’t a communicable disease in Michigan. I’m begging you to help to make it one. The only way to further research on this debilitating infection is to track its occurrence. When we have the ability to save lives, why wouldn’t we?