My Journey with Necrotizing Fasciitis (Flesh-eating Bacteria)

My Journey with Necrotizing Fasciitis (Flesh-eating Bacteria)

***Fair Warning***

***Graphic Images***

October 14th, 2014 -

This Tuesday morning started like any other day, I woke up groggy and grumpy and pulled myself into a hot shower to wash away the sleep in my eyes and refresh my body and mind. Only this Tuesday wasn't going to be a normal day. Of course, it was expected to a little abnormal, life altering even. This Tuesday was the day I finally got to end years of suffering from that nasty little annoyance known as acid reflux. After putting it off for far too long, I was going in for a much needed Laparoscopic Nissen Fundoplication. For those that don’t know, the procedure is pretty simple to explain; the upper part of the stomach is wrapped around your esophagus and sewn into place. Doing so strengthens the valve that is responsible for keeping acid from backing up into the esophagus. I was three years out from the time the surgery was initially suggested and finally tired of swallowing a dozen pills a day to fight the hellfire that is acid reflux.

I had a little bit of apprehension about the procedure. My surgeon had expressed some concern about existing scar tissue in my abdomen from a rather scopious damaging car accident 18 years earlier. The scenario wasn't particularly troubling; if it was an issue laparoscopically that just meant he would have to open me up to finish the surgery. No big deal to me really, I already had an extensive scar wider than my first two fingers running the length of my stomach, a little incision on top of it all was nothing, comparably. The surgeon also had some concern that existing scar tissue from the previous injuries could cause some issues; it may make the surgery unable to be completed laparoscopically, it could also cause other injuries should the scar tissue rip or tear. Despite a couple of attempts, the insurance company had declined to allow a scan of my abdomen first to explore the existing scar tissue. And so, the procedure would be trial and error with hopes that an incision wasn’t needed. On top of those concerns, I absolutely hate going under anesthesia. My limited experiences consisted more of unpleasant awakenings with extensive injuries than pleasant awakenings. Nonetheless, my acid reflux had worn out its welcome.

My mother drove me to hospital bright and early. I was issued to surgery prep, met by a couple of very friendly nurses and very revealing hospital gown. We chatted, discussed my tattoos and the most recent book I was skimming, all seemed well. That’s the last thing I remember until two weeks later.

Waking up is kind of a blur…...a series of wicked hallucinations and fear for my life…..I’ll get more into that another time. For now, let’s look at those first two weeks as told to me by family and doctors:

Day 1 ushered in the first complications. For reasons unknown at the moment, I didn’t come out of anesthesia the way I should have, in short, I wasn't breathing well on my own. Doctors originally thought it may be scar tissue in my esophagus that was swollen from the anesthesia and surgery. I was intubated with a ventilator and assurances were given to my mother that I should be fine the next day as the swollen scar tissue subsided.

Day 2 I hadn’t improved any but, I still wasn’t viewed as being in a critical situation. As one of the nurses was cleaning my surgery sights, she noted a green pus oozing from one of them. The surgeon was notified and I was taken into surgery that afternoon. Turns out my small intestine has been damaged; there is a discrepancy here as to the actual cause and to this day I could not tell you if it was the result of scar tissue tearing open my small intestine of the nick of ultra sharp surgeons tools. Different doctors say different things, regardless the result is the same. I was opened up this time, the tear/nick was discovered, repaired, and cleaned. Once again, assurances were given that I would be fine the next day. My mother went home to rest, expecting an improved son when she returned the following day.

Day 3 saw my condition deteriorating even further. As my mother came into the ICU she was stopped by a nurse, inquiring if I was her son. My mother answered yes and which point she was told that I was very, very sick and if she was my mother, she would have me moved to another facility immediately. I don’t know who this woman was, but she is responsible for igniting the chain of events that would save my life. The surgeon was notified and it was agreed that I would be transferred to University Hospital in Columbia, approximately 100 miles away. And this is where the absolute cluster fuck begins: one doctor thought there was an issue with my esophagus, collapsing due to previous injuries, something that the doctors in Columbia could fix with surgical mesh to reinforce the walls and structure of my throat. Another doctor stated that I had pneumonia and my heart was enlarged on one side, leading me to being so sick. Neither had a clue.

While I was being airlifted to Columbia my parents were heading home to pack for a couple of days stay. Before they could even finish packing their suitcases my mother’s phone rang; I had arrived in Columbia, with dire news. The doctor’s statement was simple, they could not wait for my parents to arrive to take me into surgery, I had to be taken immediately and all they could say was that they would do the best that they could do. The phone call, the outlook, was shocking and grimm. The doctors would later tell me that when I arrived, they immediately examined the surgery sights, and found Necrotizing Fasciitis the size of a man’s hand (this particular Dr, at over 6’ was a sizable fella, with sizable hands). In the 30 minutes it took to evaluate me and prep me for surgery, they watched with a naked eye the NF double in size! Debridement of the NF infected skin is the only option. It is essential that the infected skin be removed to prevent further spreading as NF acts quickly, very quickly. If the infection gets into the muscle it may cause limb loss, or worse. If it spreads too far, into organs and the blood stream, death is sure to follow, and as witnessed, NF doesn’t waste any time getting around. My doctors estimated I had 6 - 8 hours, at best, from imminent death.

Below is a couple of pictures after the first set of debridements:

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It was scary time for my family. One of my best friends and my daughter arrived to the hospital first. The news was shocking, they just didn’t know if I would make it through the night. Later, the doctors would tell my mother that when he returned to the hospital the next morning, he truly expected to hear the news that I had not made it. This was one of the most serious and severe cases of NF they had seen. Thankfully, I did make it. All told I had a half dozen surgeries over the next week or so to remove infected tissue. I would spend the couple of weeks wrapped in a wound vac, an interesting little concoction that is basically a great big giant sponge taped over a wound and hooked up to a vacuum on the wall to promote blood flow and drain all the nasty ooze that comes with a wound like this. It amazed me these giant containers of nasty fluid the nurses would dump out. How does the body do it?

Three weeks or so after being admitted to Columbia and diagnosed with NF it was time to start replacing my lost skin. The first step was to shave my head and use that skin for a test area on my side. It’s an odd feeling to have your head wrapped in a bandage that is literally stapled to head! All-in-all, the test site went well and the skin graft took amazingly. Now on to step two, skin was taken from my right thigh and placed over the remaining area of open wound. The bad news was that the sites where they take the skin hurt like a bitch! I was warned those sites could be more painful than the actual wound site (yeah, right!), they weren’t kidding! But with bad news there must be good news and the good news couldn’t be better. The skin grafts took so well (>95%) that I only had to have two surgeries in all. The results couldn’t be better! In the picture below, the mostly white, tightly patterned skin is the initial graft from head, all of the remaining is from my right thigh.

The doctors had a regimen and, despite the tremendously great care I was receiving,  I was determined I was not staying in the hospital any longer than I absolutely had to! I needed protein to heal and 3,500 - 4,500 calories a day. Now, I like to eat, but at that point, my stomach was still sore and my appetite was not the greatest so the solution was to drink four Ensure type protein supplements a day. At first, they didn’t taste so bad but let me tell you, they get old quick! I ate every piece of meat at my meals, drank every drink they gave me, supplemented with the occasional handful of NERDS candy (I still needed my sanity). I was not staying down for long!

By November 11th, just a few days shy of a month since this all started, I was on my way home, well, kind of. I was on my way to my parents house which had recently been outfitted with a hospital bed in a spare bedroom and an order for home health to come out and change my dressings and check my wound. By Thanksgiving and the Black Friday sales, I was braving Wal-mart, with a wheelchair and small army of bodyguards around me to ensure no one bumped into me or my side. The week before Christmas, I was headed to my own home. While I appreciated every single thing my parents and Grandmother did for me, the meals, the running around of my children, getting me to the doctors appointments and mostly, the dressing changes on a daily basis, I was ready to be in my own home. By the first week of January, I was back to work, full-time. For the most part, my life had returned to normal, just few months after it had nearly ended.

By the time I went to last my follow-up appointment in February, I was cleared with a return visit not needed again for another year. This last picture was taken the end of December, nearly fully healed and how my side will look for the rest of my life. NF is interesting, the fat tissue never grows back and so what you are looking at is literally just a layer of skin over pure muscle. No buffer. I guess I would have one hell of interesting looking six-pack if I ever worked out! Because the skin lays directly over muscle, the body’s natural moisturizers no longer have an adequate delivery system and so I have to apply lotion daily to ensure the skin doesn’t dry out and get damaged. A minor annoyance, in my opinion, in trade for my life.

I consider myself fortunate. Realistically, I made it out of all this relatively unscathed. While the wound is pretty large and nasty looking (Dr’s estimate 15 - 20% of my skin was damaged, one report put it as high as 23%), I didn’t lose any limbs, didn’t damage any internal organs and didn’t suffer any detriment to my private parts. I don’t remember the pain that so many others have suffered through when they contracted NF, the drug-induced coma those first critical days carried me through the most of it. I don’t suffer from a massive amount of on-going pain now that I’m healed. Yes, it can be painful sometimes, especially if I’m bumped into or touched. Some days are more sensitive than others and it’s a pain when the lotion wears off and it starts to dry out but, all that is more than survivable.

I’m still working through some of the hallucinations the needed drugs caused (I could write a short book on those stories, maybe it will be another blog entry).

More importantly, I wasn’t hit with depression or anxiety or any other type of mental anguish a life-altering injury like this can cause. Sure, it hit my self confidence some and

Edit - When I originally published this back in September of 2015, I truly didn't believe, at the time, that I was suffering from any sort of depression. I couldn't have been more wrong. I knew my self-confidence had taken a hit but I didn't realize just how damaged and fragile my mental state was. In a world that puts so much value on outer beauty, I quickly discovered just how cruel and insensitive people can be towards others.

One of the things that hit me hard while I was in the hospital was simply a sense of feeling incomplete. I had a great number of family and friends by my side, showing support and love. But, I was missing that ONE person....in my case, not anyone particular, but yet, there was still a sense of emptiness. I had no spouse or serious love interest by my side.

For many years I had been in and out of relationships and/or living the single life, with no commitment to anyone other than myself. I knew, then and there, that's not the life I wanted to lead any longer. And so, I determined I was going to get back into the dating game, and seriously start looking. After a few months, I was worn out. Countless conversations ended once people saw my physical condition. Some of them just ghosted me, others bluntly expressed their appall at the site of my wound. I was already down and I was just being pounded into the ground again and again. Interactions brought about tremendous anxiety. I withdrew. I became desperate.

I grasped at the chance of love when I should have known better and entered into an extremely poisonous relationship. We were hell for each other. Hate, animosity, seething words intended to destroy each other ruled the relationship. We stayed on again/off again for two years. Every time we split, the same cycle started over again. I tried dating; I met rejection and humiliation over and over again. I was convinced I would die alone. I had to go back. It was my last chance. I convinced myself every time. I allowed myself to be poisoned by my own depression and delusions of self-worth.

After nearly two years of torturing each other, we finally went through counseling. It was then that I had a harsh realization. My reasons for being in this relationship were all wrong. Instead of healing, I was just agitating my mental wounds. I had only continued to withdraw. I had neglected friends and family. I didn't leave home. I gave excuse after excuse for why I couldn't attend various invites. All because I was placing my self-worth and confidence on whether or not I believed I could ever be loved again as this deformed monster. I was willing to accept less than I deserved out of this desperation.

It wasn't until that relationship ended and I stopped looking that I found true love (ask me about that story sometime, it's a doozy!). I'm happy to say I've been happily married for some time now and to a woman who never lets me forget just how madly in love with me she is. Yes, I still have my moments of self-doubt. My moments of "how could she love me". Unbridled fear that I will lose here to some chiseled-abs Chip-n-Dale dream of perfection. And when I do, she never fails to remind me just how much she loves me for me, and all of my imperfections.

This short story added more to this entry then I intended but I find it of utmost importance. I failed to be truthful with myself when I needed to do so the most. I failed to get help when I should have; even when I was encouraged to by others. I damaged relationships and withdrew from those who cared about me the most, when I needed it most. I set myself on a hell of path that could have been avoided if not for my own ignorance and stubbornness. And this cautionary tale is tell you, that you don't have to go down the same path. There is no shame in being scared, in losing self-confidence, in being anxious to reveal how damaged you are. But there is hope and there is help. There is no shame is seeking it. You are worth it!

All-in-all I feel like I came out of this far less unscathed than it could have been. I had an amazing group of doctors in Columbia to whom I owe my life. I can not thank them enough for their quick actions and stellar care during my stay. I’m blessed to have this life, to have more time to spend with my children. I’m blessed to have an incredible family that literally never left my side through this entire process and that has supported me through so much. I’m blessed with a multitude of friends who sent well wishes, came to visit me, and made sure to make sure I knew how incredibly loved I am.  I am blessed with this life and so many great people in it, that I can only be thankful.

Necrotizing Fasciitis is a rare bacterial skin infection that spreads quickly and kills the body’s soft tissue, also known as “flesh eating bacteria”. Its rarity causes the infection to often go undiagnosed/misdiagnosed, further leading to complications from loss of limbs to loss of life, in a very short period of time. Because the infection kills the soft tissue, antibiotics are not always able to get to where they need to go and often, debridement, cutting a way of the dead tissue, is necessary. The CDC records only 650-850 cases of Necrotizing Fasciitis from Group A Strep per year! Even though this is likely an underestimation due to lack of reporting, the rarity and seriousness of the disease cannot be underestimated. Medicinenet.com estimates the mortality rate between 25% - 75% depending on where the infection occurs.

Sources:

http://www.cdc.gov/Features/NecrotizingFasciitis/index.html

http://www.medicinenet.com/necrotizing_fasciitis/article.html