My journey began on a Thursday in January 2015. I was at work; the whole office was sick with varying degrees of upper respiratory symptoms. So far, I had been spared. Around lunch time I went to the bathroom, wiped myself, and felt a small bump. This is not all that unusual for women, so I did not think too much of it. Later in the day I started to get a chill and I am never cold, I just thought, great now I’m getting the crud everyone has. By the time I got home I was exhausted. Thursday night I came home from work and went straight to bed.
Friday morning, I woke up and felt awful, called in sick, 1st time in years. And when I went to the bathroom and wiped myself that bump was still there and seemed a little bigger. I thought great, feel sick and now this thing is bigger. But still did not really think much of that bump. Went back to bed and slept.
Saturday morning, I knew something was very wrong. That bump had grown from a less than pea size feeling bump to my whole right-side groin was swollen and hot to the touch. My niece Emily drove me to my Dr. office because they were open ½ day on Saturday. I was seen by a PA and she said she just needed to lance that and let it drain. So, she did, and a tremendous amount of blood came out, no pus or obvious infection. She did not do a culture. She gave me an oral antibiotic and told me to take sitz baths thru the day and if not significantly better by the next morning to go to the ER. The bleeding stopped rather quickly, I took 4 sitz baths and had 4 doses of antibiotics by Sunday morning.
Sunday morning, way worse. My sister Tracy had been in FL on vacation and just returned Sunday morning. I called to ask her to take me to the hospital and she was tired, so I had to wait until the afternoon for her to take me. I had her take me to Deaconess Women’s Hospital ER, because of the wound location I thought I was dealing with a gynecological issue. By the time we got to the ER, my sight was whiting out, I felt very weak. They could not get a blood pressure reading. When they examined my groin, I was extremely fortunate that the doctors were very knowledgeable and knew immediately it was necrotizing fasciitis and wheeled me underground next door to Trauma at the regular Deaconess hospital. Tracy left and went home at this point. There they did some tests and a cat scan and confirmed an infection pocket. My overall body functions were dropping, I was in kidney failure, my white blood cell count was over 40,000.
I was extremely lucky that 2 very experienced trauma surgeons were in the hospital, Dr. Cherakupali and Dr. Patel and Dr. Shuman a gynecological oncologist surgeon. The 3 of them stood over me, holding my hands, telling me how extreme the infection was, and that I needed immediate surgery, and the surgery was very dangerous with a low outcome of survival. I said I have no choice but to trust you and please if possible don’t let me be on a ventilator when it’s over. I had never known anyone to survive a vent. Someone contacted my family.
Then there was a rather comical period where they tried to insert a catheter. Had me in some interesting positions. I told them the last time I tried these poses; it was my honeymoon and with the Kamasutra and I had way more fun! I don’t remember anything else until I woke up from surgery.
I woke up with 2 nurses standing over me with light behind them. I asked them if I was dead. They said no you did great. Someone else came in, again with light behind them, I could not see faces, and I asked if I was dead. They said no. I asked if I had a ventilator and they said no, you’re talking. Then the doctors came in and were petting me telling me how well I did in surgery.
I am extremely blessed I did not lose any limbs; some ligaments and my right leg gets wonky sometimes, but it’s still there. I must use my walker to go any distance or to carry things. Stairs are difficult because my right leg is not stable, so I must go one at a time. Couple that with bad eyes and bifocals and looking down the stairs looks like a slide to me.
I was taken to recovery which I do not remember. I woke up in ICU with my cousin Vicky Woods by my side. She is my person, my significant other, my everything. Vicky and her sisters and family had also been in route back from Florida, having just taken their mother Linda for a final trip in her last days of cancer.
My first surgery to remove the infection left me with a wound from my right outer labia to my inner thigh crease, from the top of my pubic bone to down the inner thigh crease to about 3 inches to the butt side. In total the wound was 9 inches long, 8 inches wide and 8-9 inches deep, with the thigh side being rather straight but the labia side being rather jagged.
It is now Monday; the wound is covered but open. I never saw it myself, Vicky did.
Tuesday, they checked the wound again and did some additional surgical debriding, then I got the wound vac. Installing the wound vac was quite the show and people came from near and far to observe. There were 4 doctors and several nurses and PT and reps from the Wound Vac company. They were all very experienced with wound vac’s but none with such a large wound in that genital plus moving crease location. There they all hovered over me, cameras, and cell phones in hand to document, trying to get everything just right so the wound vac would suck down and seal. When it finally did, they cheered. Over 4 feet of wound vac sponge material was inserted into the wound. After the initial wound vac placement, I had 3 wound vac changes in surgery, then they went to bedside.
I was in ICU for 1 week. I responded well to the surgery and antibiotics. I went to a regular room for 2 weeks. I had “aha” moments in wound vac changes but no pain and was not on pain medication. I was given anxiety meds about an hour prior to changes.
My cousin Vicky and I handle everything with humor. In ICU people that entered the room had to be gowned up head to toe to prevent any other infection from getting to me. They called me Toxic Tammy. But I was popular with staff because I was the only patient not on a vent so I could talk, and we were funny! I was moved to a regular room for 2 weeks. There we met a great male nurse, about our age. When he did a wound vac change and saw the wound, he looked at me and said, “Girl that is some rock and roll hootchie coo right there!” That is now my theme song.
During this time in the regular room at Deaconess my daily Hospitalist was a female doctor named Dr. Layla Mehla. She was stunning, I called her Miss Universe, originally from Iraq, she was very tall with long black wavy hair, wore exquisite clothing and sky-high Louboutin heels and she smelled devine. Even when she came in on the weekends, she wore Louis Vuitton track suits and tennis shows! I had a girl crush.
Through these first 3 weeks the wound vac dressing was changed every other day or anytime the seal was breached, which was just about anytime I moved my leg. The first 3x was done in surgery. This meant the packing had to be removed, the wound cleaned, packing replaced, dressed, and try to suck the seal down. Each dressing change took about 3 hours start to finish and was physically and emotionally exhausting. Between the wound vac placement and catheter, I was not able to wipe myself so staff had to wipe my behind. I had never had a baby, or any major surgery, I had never been exposed in this way, it was humiliating for me.
After 3 weeks at Deaconess, I went to Select Specialty Hospital in Evansville for wound care and PT. It is an old facility, but my care was fantastic. The wound care specialists were tenacious in my care. I did PT every day, walking the halls, doing the Nu-Step machine, resistance band exercises. The Nu-Step machine is incredible, a full body, recumbent elliptical. So easy to use but so effective. I would love to have one at home, it is the single best piece of equipment I have ever used. I was at Select Specialty until the end of April. Then I came home, my wound was now down to about 4 inches long, 1 inch wide and 1 inch deep, still had the wound vac, but manageable with home health.
Owensboro Regional Home Health took care of me and did a great job. But I soon developed c-diff. This was horrible and I became sicker than I ever had been with the necrotizing fasciitis. My family took me to the Owensboro Hospital, I went thru 4 failed rounds of c-diff vancomycin and flagyl treatment by an ass of a doctor, Dr. Hast.
The difference in care I received from Deaconess and Select Specialty to Owensboro was appalling. At Deaconess and Select Specialty all areas work as a team to HEAL you not just get you out of the hospital. Everyday my team met together, in front of me, discussed my progress, my treatment, the next step, everyone was in agreement, everything was charted, everyone was onboard. Owensboro never had one collective meeting, hospitalists, rounding docs, changing orders, overriding each other, latest info not being charted, wound not being cared for properly. It was horrible. My c-diff was so out of control I was on a rectal tube, catheter, wound vac. I was scared to death the c-diff would cause the necrotizing fasciitis to come back. I developed extreme anxiety, sitting, and rocking back and forth, wringing my hands, afraid to go to sleep, afraid to lay down. Dr. Hast called me terminal, in the middle of a wound dressing change with 4 nurses. I said what did he say, did he call me terminal? I had them call him back and I fired him.
Thankfully the doctor on rounds was Dr. Salameh, a wound specialist. He offhandedly said if you were in Europe this c-diff would be cured with a simple treatment, but they don’t do it here. I said tell me about it, I am not wealthy, but my dad is an airline pilot, I will go to Europe tomorrow. The c-diff treatment is called FMT, Fecal Microbiota Transplant, basically you get someone else’s poop transplanted into your colon. Sounds gross I know. But the poop (good formed brown stool) is collected by a company called OpenBiome, they test it to be sure it is free of any disease and contains only good flora. Then it is processed down to liquid, frozen for 6 months to be sure nothing grows. Then it is available for transplant. They put it in your colon thru the colonoscopy procedure. The good flora immediately takes over the bad c-diff flora, kills it and you are cured. My cousin Vicky and I found that this procedure was done at University of Indiana Hospital with Dr. Monika Fischer. I had an appointment when my body was clear of the antibiotics I had been taking. Walked in that hospital barely able to move, shaky, feeling ½ dead, woke up from the FMT procedure cured. Immediately knew I was cured. I was not shaking, my color was back, I felt stronger.
Necrotizing Fasciitis has opened my eyes to so many things. How fleeting health is, who is really there for you, the healthcare system. We still do not know an exact cause of the necrotizing fasciitis. It was 3 forms for Strep. One line of thought is since the office was sick, I could have wiped my nose and gotten something on my hand prior to wiping myself. Could have been exasperated by the lancing, all subsequent medical staff say should not have been lanced. Who knows? I wash my hands so much now they are red and that’s not good either.
I took medicine for anxiety and it took me close to 2 years to come off that. I was left with a different looking hootchie coo! In the hospital after the first surgery, I asked the doctor if I would be able to have sex again, he said probably not. Well, I was a widow, at that time for 10 years, but only 51 years old, I was hoping I was not done yet, although I had not been with another man in that time. But about a year later I met a wonderful man, things progressed, and I told him the full graphic story, and we gave it a try, happy to report, everything works. When he saw my scar, he just laughed, said looks kinda like a mark of Zorro and proceeded to point out all his scars. So, life does go on, rock and roll hootchie coo and all.
