My story begins in November of 1993, when I was 28-years
old, and a mom of three boys, twins age 5 and a 7 year
old. In 1988, I had had many complications during the
twins delivery, necessitating three weeks in the hospital,
and an emergency C-Section to deliver them the day after
Halloween, even though they weren't due until Christmas
Eve. One of my twins had heart surgery, and they both
stayed in the hospital for 6 weeks in neo-natal intensive
care (but they're little bundles of energy now, and
Ventral Incisional Hernia Surgery
After the C-section, because of the amount my body had to expand
to accommodate my pregnancies, I developed what is called ventral
incisonal hernias. This means that my muscles literally split
open in my abdomen. It caused me a lot of pain, and a sagging
belly. So, like my mother, who had the same problem, I went
to a plastic and reconstructive surgeon to repair the hernias
on November 5, 1993. The surgery cost $4,000.
Almost immediately, I began to feel unwell, but I was post-op,
so it didn't concern me. A very, very tight bandage covered
my abdomen, and I had Jackson-Pratt drains coming out of the
sides. These drains suctioned fluid from the suture site, which
my husband Rick, and my friend Michelle emptied when they were
full. On November 8, 1993, I went back to the doctor. He removed
the drains, and instructed me to put half a diaper over my suture
line so my suits didn't get wet from the drainage, and wear
a very, very tight (and expensive!) girdle at all times.
On November 11, I returned to the doctor. At
this time, I had an awful lot of fluid in my abdomen. The nurse
and doctor removed it with a syringe into a bowl. It measured
over 600 cc's. I felt unwell, awfully sore and fatigued, but
it was only a week after major surgery.
During the next week, I began to spike fevers.
My suture line (which was over my C-section scar, extending
60 centimeters) became swollen, and very red and sore. Rick
called the doctor, who told him to soak my suture line to promote
The First Opening on the Suture Line
I returned to the doctor on November 15, 1993. I had so much
fluid in my abdomen, that it actually sloshed around like a
water bottle!! The doctor asked me to stand and lean against
the examining table. He knelt, and made a cut through the sutures
just above my pubic area about an inch wide. To my horror, a
bloody-orange, cloudy fluid gushed profusely out of the wound.
The doctor jumped back, but not before it splashed his arm and
his shoe, and all over the floor. I was frightened to death,
although the doctor and nurse weren't overly surprised. They
instructed me to start packing the wound with betedine and gauze
. The doctor ordered a second round of antibiotics, and told
me to take two more weeks off from work.
For the next week, I noticed that the drainage
was become thicker, and yellowish. I was horrified at the open
hole on my abdomen, and did not have the stomach to pack it
myself, so my husband had the honors. The suture line looked
awfully purple "dusky". And then Rick noticed that
another hole was opening by itself next to the one the doctor
had opened! You could clearly see the hole forming very quickly.
I was frightened, and called the nurse. She said it appeared
I was "splitting stitches" which was not uncommon,
especially in women who were carrying extra weight as I was.
She told me not to worry, just show the doctor on my next appointment.
Through the week of November 24 - December 1,
the hole completely opened to be nickel sized. I should say
as well that my umbilicus (the size of a half dollar) was completely
open, and was not healing. Other holes seemed to be opening
as well on the suture line..beginning purple, turning white
on the edges and then actually looking like the skin "dissolved".
I was very frightened, but my doctor reiterated that this was
because I was carrying extra weight.
From Bad to Worse
My husband went to Puerto Rico on an impromptu invitation with
family during that first week of December. Thankfully, I had
a live-in nanny/housekeeper to care for the kids and the house,
because I steadily grew worse. I went to bed the evening of
December 7. Throughout the night, I was delirious with a high
fever, and excruciating pain over my left hip area. I was sleeping
in my girdle, as instructed. I did not have the strength to
get up to investigate the source of the pain. In the morning,
I forced myself to walk to the bathroom, and that's when I noticed
that my girdle, on my left hip, was covered with fluid. I removed
it, and to my horror, there was a huge, deep, gash opened on
my left hip. A hole had burst open during the night.
Mom to the Rescue!
I had to call someone. I was shaking and burning with fever,
and had collapsed. I managed to call my Mom, who lives in Uncasville,
about 50 miles away. She has a sixth-sense about things, and
knew without a doubt that something was very, very wrong. She
called my Dad, told me to make an emergency appointment with
my doctor, and came to get me. At the doctor's office, she came
with me into the examining room. I had a fever of 104-degrees,
and had excruciating pain throughout my body, particularly from
my hips to my back up my spine to the back of my head (I found
out later that this is called "systemic toxicity").
I shook on the table, and my teeth chattered. He noted the new
hole, with little concern. My mother asked him what kind of
infection I had. The doctor said, "She has no infection.
She has the flu." He never cultured. And instructed me
to pack the new wound as well, and showed my mom how to do it.
(Mom was annoyed, to say the least, and didn't believe the doctor
for a second that I had the flu, and let him know it...but that's
a whole other story for another time). It was 6:00 PM on December
Rushed to the Hospital
I believed the doctor. I wanted to go home to my boys in Cromwell.
Mom, the little 4'11" redhead stomped her foot and said,
"NO. YOU'RE COMING HOME WITH ME." I was so sick I
could hardly lift my body out of the car. So there I was at
mom's. I went to sleep in the guest room, while she phoned her
closest friend, Linda, a nurse, to tell her about my situation.
The following day, Mom changed my dressings,
and I could see by the look on her face that she was seething
inside, and very, very worried. I looked like death, had open
pus-lined wounds, and a yellow material clung to the gauze as
it trailed out of the wounds. The next morning, I was weaker.
She came in to change my dressings, and as she pulled the gauze
out of the deep jagged tunnel of a wound on my left hip, the
color of the icky pus was yellow and green, tinged with blood.
"THAT'S IT!" she muttered, "This is not normal.
I'm calling Linda."
Within 20 minutes, Linda Sullivan, RN, mom's
best friend and the godmother of my oldest son, stopped by to
see what my mom was shouting about on the phone. She took a
flashlight and looked at my condition, the open holes, the oozing
pus, the purple skin, and more holes threatening to burst along
the suture line. She advised me to get to the hospital immediately.
Hospitalization - December 10, 1994 - December
The closest hospital was William W. Backus in Norwich, Connecticut.
Mom drove me and had Dad meet me there. The surgeon, on call,
was Dr. John Pagnozzi. (Even in my horrible condition, I couldn't
help but notice he was cute as a button. I wished I had put
make-up on!) Mom came with me into the examining room, and Dr.
Pagnozzi and his team, proceeded to examine me with shocked
faces. They could not believe the condition I was in. I had
a massive infection and the doctor knew immediately that it
was "fasciitis". I was admitted on the spot, and the
doctor ordered aggressive wound care, IV antibiotic therapy,
and a Catscan of my abdomen. The catscan revealed that the infection
was massive by the amount of subcutaneous emphysema (gas given
off as a byproduct of bacteria). The holes all connected under
the surface of my skin, and the one on my left had eaten at
least six inches into my body. This was the first time I cried.
If I had not sought treatment, I would have more than likely
died. I was malnourished, had very low protein, anemia.
During my hospitalization, I began to improve
somewhat. (I definitely put lipstick on - which amused the nurses
to no end!) I was on IV antibiotics and was given pain medication.
I had allergies to some of the medication, and the infectious
diseases doctor, Eufronio Moderazo, was very kind. The nurses
had to cover themselves to treat me. Strep and Staph were cultured
from the wounds. I felt very lonely. I missed my children desperately,
and my husband, who flew in as soon as he heard I was in the
hospital. The doctor's kept me advised of my options, and the
possibility that they may have to open me up and do more surgery.
Mom brought me a Christmas tree for my room, and my little boys,
excited about Christmas coming up, drew me a poster. I could
see on their faces that they were frightened.
The doctors felt that continued wound care could be carried
out at home, and so released me conditionally, to skilled home
care. This was great news to me. Nurses visited me daily throughout
the holiday season. I was pretty much immobilized. The wounds
were still open, and I was fatigued. But I thought I was getting
better and could resume my life again. I was a marketing representative
for a large firm on a commission-type basis and could not afford
to be ill!
The evening of January 4th, I took a turn for the worse. I was
in excruciating pain, and had a high fever. When the nurse came
in the morning, I told her about it, and she examined me as
she did every day. But this day, January 5, 1995, she was taking
an awfully long time. What I didn't know until much later was
that when she removed the dressing from the deep wound on my
left hip, pieces of my flesh were falling off in her hands.
She called the doctor, and off I went once again to the emergency
room to see Dr. Pagnozzi.
Rick was with me this time, and mom met me at the hospital.
Dr. Pagnozzi immediately readmitted me again. While in the emergency
room, he actually carved away a piece of my tissue - grey and
bloodless- from inside the left hip wound and I didn't feel
a thing. It was all necrotic subcutaneous tissue. A catscan
showed no improvement from the last one. I needed surgery to
remove the putrifying flesh.
Dr. Pagnozzi performed a debridement. Over my
pubic area, my left hip, and throughout my abdomen was gangrenous.
He cut away chunks of the dead subcutaneous tissue, and then
irrigated with antibiotics. He closed all the wounds once he
felt all the necrosis had been removed.
I remained in the hospital for nine days. I
was carefully monitored, and I began to feel much better, although
the first time I saw myself in the mirror, I cried. The curve
of my left hip was eaten away, and was covered with big "Frankenstein"
stitches. My umbilicus was grossly deformed, and my pubic area
bulged and protruded. I was 28, and disfigured for life.
Adjusting to Life after the Trauma
I must admit, I didn't handle it very well. I had modeled as
Marilyn Monroe and won Madonna Look-a-Like contests. I saw myself
now as an ugly hag. When I tried to make love to my husband
after healing, my heart broke. My pubic area, already protruding
and disfigured, was completely numb. So was my abdomen from
under my breasts to my pubic area, hip to hip, and down my left
leg. I withdrew from Rick physically, and our communication
screeched to a halt. I left him in March of 1994 and moved with
my children far, far away from Cromwell to the shoreline. I
underwent more surgery in April of 1994, and continued to find
myself depressed and fatigued. My sales position suffered, and
I was forced to resign. I took a 9-5 job in marketing at a local
construction company. For one who had boundless energy before,
I barely made it through the day, and without the nanny, Isabel,
well, I guess I was overwhelmed. I began to suffer from severe
duodenitis, requiring more medication and 2 endoscopies. I was
hospitalized again for 5 days in January of 1995 for a myriad
of internal complications, including bladder and intestinal
problems. I truly believe that the post-trauma caused me severe
stress, resulting in the physical problems I just mentioned.
Coming Back to Life
Throughout 1995, I began to get used to my permanent injuries.
I wore two girdles to make my hips appear even. I stopped running
to the doctor at every new lump and bump I found in my abdomen
because I realized that it was scar tissue, and not Necrotizing
Fasciitis again. I grew to adjust, to count my blessings, and
to realize that beauty comes from within.
Through the magic of modern technology, one day I came upon
the website of a woman named Donna. She had suffered Necrotizing
Fasciitis, too and told her powerful and touching story of her
survival. I Emailed her, and ....here we are! Although we acquired
this deadly infection through drastically different ways, we
had so much in common, and the flood gates opened for me. Together,
we decided to pool our hearts, our resources, our talents, and
our experiences together to form the National Necrotizing Fasciitis