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Alisa Proctor

Survivor

In April of 2005, I entered the hospital an extremely healthy woman, pregnant with my second son. I left the hospital 80 days later, minus my colon, after 21 days on life support, five surgeries, nearly six weeks in ICU and a month in sub-ICU: all as a result of antibiotic-related infection of Clostridium difficile (c. diff) and severe sepsis. (Sepsis and C. Diff)

I actually had two bouts with C. diff. I entered the hospital because while pregnant I began bleeding at 31 weeks gestation. My water broke and I was put on complete bed rest in the hospital, and was given protocol antibiotics (Keflex, erythromycin) to keep the baby from getting an infection. The goal was to keep the baby inside me as long as possible before doing an emergency c-section. After three days on bed rest, I developed painful diarrhea. I complained, but it took several days before C. diff was finally diagnosed. After 10 days of vancomycin treatment, a stool sample showed I no longer had C. diff. I remained on bed rest for three weeks until I began bleeding again and my son Jamie was born via c-section at 34 weeks gestation. He went to the NICU where he ended up with a pneumothorax and a chest tube, and he was on a ventilator for a time. Happily, he was able to go home after three weeks in the NICU. I, however, was not there. I was in ICU fighting for my life.

Although my first round with C. diff was cured within 10 days or so, my second shot at it changed my life forever. Two weeks after my first bout (and five days after my C-section) I had what I knew was a relapse of C. diff. I could tell by the distinct smell and the fact that I had one session of diarrhea in which I eliminated more watery stool than seemed humanly, healthily possible. Gallons. At the time I thought, “This can’t be good.” It wasn’t.

I was discharged from the hospital several hours later in spite of the fact that my vitals were abnormal; I was tachycardic (rapid heart rate) and my blood pressure was quite low, and it had been so for at least eight hours. In hindsight, it’s clear that I was in the first stages of sepsis. At home I continued on the oral vanco. The diarrhea stopped, but I continued to feel worse and worse overnight. The next day I felt awful. I knew I must be dehydrated and, at some point, I was no longer able to urinate despite having ingested plenty of liquids. We went to the ER and I was finally seen after being ignored in the waiting room for 45 minutes. I was admitted by the triage nurse, “stat with emergent code blue.” She couldn’t get a blood pressure reading.

Although I didn’t know it until after I “awoke” three weeks later, that second bout of C. diff caused pseudomembranous colitis and toxic mega-colon. As a result I developed severe sepsis, abdominal compartment syndrome, and multiple organ system failure with renal failure, respiratory failure, and disseminated intravascular coagulation (DIC). (Sepsis and DIC) I spent three weeks in a drug-induced coma while on a ventilator.

I had four surgeries while in ICU, the first removed my entire colon, and I was given an ileostomy (a stoma was formed and my waste is now collected in an external bag attached to my abdomen). The second surgery was to open up my abdomen and try to reduce the pressure on my organs, which were failing due to the effects of severe sepsis and abdominal compartment syndrome. A wound vac was placed and for the next two weeks, fluid was drained from my swollen body. I had gained about 80 pounds almost overnight from fluid leaking from my blood vessels and, for a time, they were draining 10 liters of fluid per day from me. I was a very sick puppy. I received huge amounts of blood/plasma products and was on more drugs than seems possible, including Xigris, a drug used under rare circumstances to help battle severe sepsis. I continued on vancomycin, Zosyn, and Flagyl. I also had vanco regularly put into my NG tube, and daily vanco enemas (fun!) in my now 4″ stump of rectum.

Against ALL expectations, I survived. The third surgery was to remove the wound vac. However, I was still so swollen from fluid that the surgeon could not pull my abdomen back together. So, a patch of Alloderm was sewn in to cover the gap between my muscles and hold my innards inside. After three weeks on a ventilator, I was extubated (off the ventiltor) and woke from my drug-induced coma. A week later, after I had lost about 45 pounds in fluid weight, I had another surgery to close up my abdominal skin. However, since I was still substantially swollen, the skin was stretched very tightly and after a bit the skin tore away around the sutures. This resulted in an open would about 3 inches wide and 10 inches long that was left to heal from the inside out. (In fact, it took over three months for the wound to completely heal and fill in.) After being removed from the ventilator, I had a bout with “ICU psychosis,” complete with visual and auditory hallucinations.

The road to recovery in the hospital was difficult with many stumbling blocks along the way. In addition to C. diff, while in the hospital, I also acquired MRSA, enterococcus, and acinobacter infections. And a few weeks before being finally discharged, we discovered that I had bilateral pleural effusions – fluid had built up in the space between the lining of the outside of my lungs (pleura) and the wall of my chest. A thoracentesis procedure was performed, and drained about 1.5 liters of fluid from each side.

After nearly six weeks in ICU and about a month in sub-ICU, I finally went home. However, I was still very far from well. I could barely walk a few steps, and had lost most of my muscle mass. My husband described me as “a bag of bones.” It took three months before I could even walk without help or pick up my baby. It took well over a year until I could function “normally.” And then I had to come to grips with a dramatically changed body and a future with either an ileostomy, or future surgeries for a J-pouch reconnection (attaching the end of the small intestine to the rectum). I survived most likely because I was young and healthy. If I had been elderly or not had reserves due to good health, I most certainly would have died. Even as it was, it was touch and go. Without the incredible support of friends, family, and my amazing husband (imagine: his newborn son in NICU, while his wife is in ICU!), I doubt I would have made it. I have many hard working doctors, nurses, and a host of other hospital personnel to thank for working so hard on my behalf. The irony is that the cause of my illness and battle against severe sepsis started in the very same hospital with a very common, fairly easily treated hospital-acquired infection – Clostridium difficile (c. diff).

C. diff is typically a hospital-based (nocosomial) infection and is often spread through the lack of adequate hand washing by hospital personnel. It has been demonstrated that alcohol-based hand sanitizers are NOT effective in killing this bacteria. C. diff most often hits the elderly, the very young, and the immunocompromised. In general it is considered relatively easy to treat, albeit effectively with only a couple of very strong antibiotics. It usually doesn’t cause much more harm than very painful cramping and diarrhea. However, over the last few years that has begun to change. C. diff is becoming more virulent and has begun to severely effect even otherwise healthy people. In fact, it has caused thousands of deaths in horrible outbreaks in Canada, the UK, and in the eastern portion of the U.S. It is becoming resistant and mutating. A hypervirulent epidemic strain has developed. In fact, specialized genetic tests by the CDC revealed that the strain I had was the hypervirulent NAP1/BI/027 strain (although I was not a part of an epidemic, and at this point may be the only pregnant woman in CA to be identified as having had this strain at the time).

This hypervirulent strain produces over 20 times the usual amount of toxins and can quickly become quite serious and/or lead to death. After my hospitalization, the CDC contacted me in regard to being a part of a study about severe cases of C. diff in pregnant women. As a result of this study an article was published in the American Journal of Obstetrics & Gynecology (June 2008). The article focused on pregnant woman who have had severe outcomes as a result of C. diff. I am one of the 10 cases that were included in the article. Sadly, five of the women had colectomies and three of the 10 women died along with three babies. At this point, c. diff is not a reportable communicable disease, and thus, it is difficult to track unless a large outbreak occurs.

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