Her resume says she is unavailable for work at this time because she is fighting Necrotizing fasciitis(NF) also known as man-eating flesh disease.
Alicia Cole 45, is now on the slow road to recovery although not entirely out of the woods yet. Her days are spent changing the gauze on her yet unhealed gaping wounds in her abdomen and with what little energy she has left Cole is trying to make sure no one has to suffer as she has.
The Sherman Oaks, California resident and actress has become the poster child for hospital-acquired infections, which kill around 100,000 Americans each year.
Alicia Cole Hospitalized
“This is one of the worst cases I’ve ever seen in my life. I don’t know how she survived it,” RN Chris Cahill tells IB News. The public health nurse worked in infection control for 30 years for the state Department of Health Services and has become familiar with Cole’s case.
Federal estimates are 6 to 10% of hospital patients will contract some form of infection. About one-third of patients die unless the disease spreads to internal organs, as it did with Cole. Then fatality rates rise to about 70 percent.
NF is, like Methicillin-resistant Staphylococcus aureus (MRSA), a form of hospital acquired infection that is difficult to contain with antibiotics. NF can be caused by Staph or more commonly the group A Streptococcal (GAS) bacterium, which also causes strep throat. It is a particularly aggressive bacterial infection that can rapidly spread through the blood destroyingskin, fat and tissues and eventually can shut down the organs.
Alicia in better times
The first symptom of a hospital acquired infection is a high and sudden fever within 48 hours of admittance to a hospital for another condition. No one knows why in some cases these aggressive infections can affect an otherwise healthy patient, as was Cole.
Lying in the Intensive Care Unit after five surgeries Cole tells IB News, she made a promise. “Lord just let me live and I’ll make sure no one goes through this” she says.
And she’s making good on her promise.
She has established the website www.Amendthecap.com to create awareness about California’s medical malpractice cap of $250,000 for pain, suffering and emotional distress, even if your injury is caused by the hospital.
Cole is telling her story to the National Necrotizing Fasciitis Foundation is part of an online community of thousands.
As a consumer advocate, Cole has created a compelling and articulate
where she stands outside of the Los Angeles County Health Department just before testifying before a state advisory committee urging hospitals to make public their rates of infection and failures of surgical procedures. Restaurants get a letter grading, why can’t hospitals she says.
California does not require hospitals disclose that information. In fact last October, Governor Arnold Schwarzenegger vetoed a legislative proposal that would have required hospitals to make their failures in infection control and surgical errors public.
Cole’s story begins on August 15, 2006 when she went into Providence Saint Joseph Hospital in Burbank, California for removal of two uterine fibroids, a routine procedure usually involving a two day hospital stay. The hospital which has received many awards for excellence from Healthgrades, a hospital rating company would not discuss Cole’s case citing patient confidentiality.
After contracting NF, she spent four weeks in Intensive Care and had to undergo five additional surgeries to cut the bacterial infection from her abdomen, left butt cheek and top of her left thigh. At one point doctors thought they would have to amputate her left leg.
She credits her parents Ron and Betty Cole with saving her life and her sister who helped renew her faith when she didn’t think she would survive. Cole tells her story to IB News.
IB News- I have to ask you first with all the talk against medical malpractice caps if you are funded by any special interest group that is fighting tort reform?
Alicia Cole - “My mother has a special interest in this, brothers, sisters and friends who are feeding me, doing my laundry, taking care of me, they have a vested special interest. Trust me I don’t need anybody’s special interest money. I had an appointment today. I go to CVS and pick up special dressing and hope these holes will close finally. I’m still looking like Swiss cheese. I can’t walk and do too much because of the area of my wound. If I move, sit, anything, it opens up and tears. My activities are limited so I try to be as still as possible.
IB- How is your healing progressing?
AC - “Well they let me go home. It just got to the point where my fever eventually started stabilizing. That’s how we knew I was getting better. My doctors, even until a couple of months ago they’d say to me you’re not in the clear yet, but you’re in the high grass. Even when I came home because of the size of the wound there is always the chance of a secondary infection. I’ve been the most careful patient in America.
IB- Are you in pain?
AC - “Pain? Oh honey, you don’t know pain. It was excruciating to the point that finally you numb out. That’s when they put you in a drug induced coma. My parents were concerned. At one point, they said you have to do something -- she keeps hitting morphine in her sleep. But the nurse said it locks you out every five minute period. To imagine what I must have looked like in my sleep pushing on a pain button, there was no time that the pain buddy was not in my hand.
IB - How was your infection first identified?
AC - “My mother is the one who spotted the disease. I was swelling with [a] 103 degree temperature and my abdomen was getting redder and hotter and harder until it was like a brick. My mother was making sure. Every time they took gauze off me she checked. The third day after my surgery, the nurse came in in the afternoon and raises up the gauze and is about to put it back down and my mother says, “What’s that black dot?” The nurse says, "I don’t see it." Then she says, "It’s probably a mole." My mother says, "She doesn’t have any and that wasn’t there this morning."
The nurse said, "It’s probably lint." My mother says, "Where would lint come from under the gauze?" She looked at the nurse and said, “Oh no, it’s not on her skin it’s IN her skin and was not there a few hours ago.” The nurse gave my mom a hard time, "It’s no big deal," "Don’t make anything out of this." And, "Wait until tomorrow when the doctor comes in."
My mother said, "Fine, I’ll call him and ask him to come back here." Finally the nurse says, “Fine, I’ll call him so he can tell you its nothing.” It took the doctor an hour and a half to get to hospital and when he took a look at me it was a quarter size pustule. He scrambled and got gauze and called for the scalpel. While we waited he looked at my mother said “Are you squeamish?” She said no and the doctor said “I need your help. We have to do this now!”
He had her put on a mask and gloves and the doctor and my mother cut me open. I was wide awake the whole time he cut an incision in my back open. He extended my incision two inches on each side and he told my mother “Mirror what I do.” Pain? I remember squeezing my eyes real hard thinking surely this is a dream. If I squeeze my eyes I’ll wake up. At that point my mother’s hands are in my stomach.
I looked at my doctor on the left and my mother on the right side with her hands in me with gauze sopping up drainage and pus. The doctor said, “Alicia I know this hurts but you are about to be in excruciating pain. I need to put in sutures like a baseball. Squeeze your moms hand as hard as you need to. This is going to be really painful.”He commenced to cutting open my sutures. Everything he cut it was like shoe strings in the cavity of me. He was opening me to get as deep as possible to get the pus and drainage and fluid out of me.
The nature of the disease is that it keeps eating until you remove it. At that point they hadn’t even figured out what it was and hadn’t done anything about it. It was still eating me alive. Over the next week I just started having rotted flesh and dead skin and pustules over my abdomen. I had I think 2 or 3 IV towers that were each full of antibiotics. They would mark my stomach with a black marker every day, circle the area that’s red then they would cut this away a little extra and try and head it off. Then they would cut that away and draw a new line. You would see it grow to that line and beyond. My mother would say “No, it’s still eating.” Then next day big pustules and dead tissues would be on the outside of the black line and they’d cut to a new black line.
IB – What finally stopped it?
AC - "God between the antibiotics. They don’t know if my NF is caused from MRSA or some other organism, but whatever it was it was resistant to everything. My parents had to sign a waiver at one point because one antibiotic had just been approved by the FDA and they had no idea what the side effects would be. I had more than one doctor say “You are a guinea pig.” I also had sepsis. We were playing beat the clock.
One of the nurses told me I was the third patient they had cared for. Both had NF on a limb and they didn’t make it. That nurse would come to see me because she just wanted to see me, to see that I lived.
Now I don’t take one day for granted. When you’re in a room for two months, I had my first patio pass and we went outside. My mom and dad had the IV pole and they sat at my wheelchair in the sun and I felt on my face the breeze on my skin. It was such a sensation. You will never fully understand breeze until you haven’t had one. Just something simple like breeze on your skin is amazing. Even now I love to feel the wind blowing on me. It makes me appreciative of everything. #
(Part Two- Alicia Cole Patient Advocate)