Necrotizing Fasciitis. It’s extremely rare, so you never think it’s going to happen to you or a loved one. Until it does.

Have you ever heard of flesh-eating disease? I had, and I knew it wasn’t pretty. About two years ago, I attended a talk by a man who had lost his leg to necrotizing fasciitis, also known as flesh-eating disease. At the time of that presentation, I had a vague memory of that term, but had no idea what it entailed.

So I went home and looked it up. I ran across several studies, information pamphlets, and stories of people who had endured this infection. The one that most stuck with me was the story of Alex Lewis, who lost all limbs and part of his face as a result of this infection.

Necrotizing fasciitis is caused by the same bacteria that causes strep throat, group A Streptococcus. Most of us carry this bacteria on our bodies without issue. But once in a while, that bacteria enters through a cut or scrape in your skin, goes wonky, and releases a very dangerous toxin into the host’s body.

This toxin spreads extremely quickly and can (and usually does) kill the host within 24 hours of the onset of infection. Once the toxin enters the bloodstream, the only way to stop it from reaching the heart is to amputate the parts where the bacteria has travelled, which is why many people who have this condition end up losing limbs (and other body parts) in the process. Necrotizing fascitis is an extremely serious, but also very rare infection, so you never think it’s going to happen to you or a loved one. Until it does.

 

On My 22nd, 2018, right after a lovely holiday weekend, my husband left for work shortly around 7:15 a.m., as usual. At 7:45 a.m., 5 short minutes after he had arrived, he sent me a text message: “..I feel like I am fighting a cold and my right [middle] finger is very sore. Last night it was irritated and today it is a constant dull pain. I will keep you updated.” Later, he called me to say he was coming home. I asked what was wrong with his finger, and he told me he had spilled some motor oil on it, but had washed it several times. He said the skin was a bit irritated the night before, but no big deal.

I thought it was very odd that he was coming home, as he usually pushes through colds and goes to work anyway, and I had known nothing about his finger before this message and phone call. He came home and went straight to bed. I asked if I could have a look at his finger. I’m no doctor, but the minute I saw it, I knew it was infected—the finger was 2.5 times its normal size.

I told my husband to go down to urgent care, to which he replied that he was just going to sleep it off. So I compromised with him: “OK, I’m going to set an alarm for 15 minutes, and then you’ll go down to urgent care.” We bargained some more, and finally decided on a 20-minute nap, after which he drove himself in our minivan down to the hospital.

After several hours in the waiting room, during which time his finger was throbbing more and more, he finally saw a surgeon intern. To make a long story short, they took an x-ray, which showed nothing, and before he got sent home, Dan asked to have his finger drained.

When the surgeons made the small opening to drain the finger, they found the necrotizing tissue underneath (basically, the fat and fascia under the skin were turning black. That’s when they suspected necrotizing fascitis, opened his entire finger from side to side and top to bottom (as well as part of the palm), flushed it out, gave him hydromorphone (a painkiller 5x as strong as morphine), IV antibiotics, and flushed the area to get everything out. 

Dan was so out of it he doesn’t recall an entire phone conversation in which he told me he was going to have surgery, but hung up too soon without telling me what kind of surgery. With the previous knowledge I had of this disease, the only thing I could think of when I heard “surgery” was amputation. But it turned out they just needed to open his finger and hand up.

Coming home after a necrotizing fasciitis diagnosis

At 6:00 p.m., a full 8 hours after he’d first arrived at the hospital, Dan was finally told he could go home, after they wrapped his whole arm in a half cast and tensor bandage, on top of all the wound dressings underneath. Unfortunately, he was still under the hydromorphone effect and couldn’t drive himself home. But he had the van with the carseats in it, so it was complicated for me to pick him up. I called our regular babysitter, who was so sweet to come and take care of the kids free of charge while I picked up my husband, who by this point looked like he’d been through the ringer, and was completely exhausted.

He had to take 2.5 weeks off work as his body continued to fight this infection. Once the IV antibiotics were done, he was given penicillin in pill form (600 mg 3x/day, which is a huge amount) for 10 days. After the 5 days were done, he was given a smaller dosage, still 3x/day for another 5 days.

About 3 days after his surgery, his dressing changed to just two fingers and the hand, and a couple of days later to just the finger. By the second dressing, I became his wound nurse. About $200 in wound dressing supplies later, we were set to take care of his bandages at home. He still had regular follow ups every couple of days at the hospital during this time.

At one of these follow ups, his surgeon wondered aloud if one of our kids had strep throat, and that might be how he caught the infection. At my mother-in-law’s urging, me, the kids, and her all went to be swabbed for strep throat. A day later, my doctor called to say me and the kids were all positive for strep. And now my sore throat and the kids being whiny for the last week and a bit all made sense. So now the entire family was on antibiotics, and I was managing wound dressings and medications for 5 people on different dosages for 5 more days. I took a picture of what that looked like:

 

But what you don’t see in this picture is the sheer exhaustion I was dealing with. My husband is extremely involved in household and parenting chores, which allows me to work and get my articles delivered on time. Of course, during this time period my husband couldn’t be too involved in anything but recovery, which left me to homeschool the kids, take care of the house, and still deliver all my work on time—clients don’t care if you’re having a crisis. And since I get paid ahead of time, it’s even more important that I deliver my work as agreed to in our contracts.

By week 3 of this ordeal, I was putting on a brave face, but I was completely spent. That’s when my brother sent me some money, which I thought was odd. I texted him to ask if he had sent me money, and he said, “Yes, I did. Go to this website and order yourself dinner for tonight.”  My brother said he was sorry he couldn’t bring us a  warm meal since they don’t live in the same city, but this is the closest he could get. And when I saw that message, I breathed a sigh of relief, because that was so incredibly helpful. 

Our family is used to having home-cooked meals every night, and making food after caring for an entire sick household (myself included) was completely exhausting. A couple of friends also brought us meals, and my husband’s parents watched the kids a couple of days so Daniel could get the rest he needed, and I could still get my work completed and delivered on time. One of our friends also watched the kids for a whole afternoon, and then sent me home with dinner when I came to pick up the kids.

 

During the crazy time when we were dealing with Dan’s illness, a few things happened on social media that completely broke me. From people picking arguments over stupid things, to being criticized and called ungrateful when I completely broke and asked for help, to being called dishonest by someone who received a free gift from me, I just couldn’t handle any more emotional upheaval in my days. So I deleted and deactivated my Facebook account, and swore off social media until our family had recovered from this ordeal.

 

 

We are now, I’m happy to say, fully recovered. My husband was one of the few lucky patients whose infection was discovered quickly enough that he didn’t have to lose any limbs. All that’s left to tell the tale is loss of sensation at the very top of his finger, where the infection began, a big scar, and limited range of motion on the affected finger. And thank goodness, it’s his non-dominant hand.

But make no mistake: this infection could have killed my husband, and would have, if he had decided to stay home, or if he agreed to be sent home from the hospital after the x-ray came back clear. So it wasn’t just dealing with the physically exhausting aspects of caring for an entire sick household, it was the knowing that I could have lost my husband—the emotional part of even having to think about that was extremely difficult.

I remember after bringing my husband home that first day, hugging him in the kitchen and telling him, “I don’t know what I’d do without you.” To which he responded, “I’d find a way to help you.” And I laughed and said, “what, you’re going to come back from the dead?” And we both shared a lighthearted laugh on a day when we didn’t think we could smile.

Are you at risk of necrotizing fascitis?

It’s important to remember that this is an extremely rare condition, but that it also can happen to anyone. Any time there’s a break in the skin, infection can set in, which is why proper wound care is very important. This particular infection, however, is not common.

Initial signs and symptoms are redness and swelling in the affected area, and pain that’s disproportional to what can be seen with the naked eye. For some people, vomiting, nausea, and other flu-like symptoms are common.

All my husband had was a swollen finger, pain (which he doesn’t show a lot—even the doctors couldn’t believe he wasn’t screaming in pain once they realized what it was), and tiredness.

My advice to anyone from now on is: if something is swollen and painful and you don’t remember hurting it, go to the hospital. It could be nothing (and in most cases, it’s nothing), but it if is necrotizing fasciitis, the quicker you get treated, the better your outcome will be.

I want everyone who helped us during this really difficult time to know that I appreciate you very much. I’ve already thanked you all in person, and I’ll be sending a note of thanks later this week to each of you.

And to all those who were pretty awful to us during this time, know this: I forgive you. But please, when someone is going through a crisis, if you have nothing nice to say, please say nothing at all.

For more information about necrotizing fasciitis, please see this article, available on the NCBI database.  This article from the CDC is also helpful.