My NF story begins in mid-August 2020 in the heart of the pandemic. I was no stranger to the ER/hospital as I was hospitalized in July/August 2019 with septic shock due to two enormous kidney stones, spent five days in a medically induced coma, two lithotripsy procedures, etc., but that’s a story for another day.
A couple of days after my birthday (August 16) I developed a small painful boil/pimple on the base of my left butt cheek. As I’ve done many times before in my 50+ years, on Tuesday I squeezed it to relieve the pain and “drain it.” (I will NEVER squeeze anything but a bottle of ketchup ever again!!!) Instead of getting relief, the pain got progressively worse. On Friday I called in sick to work and had a tele-med appointment with a doctor in my PCP’s office. He prescribed Bactrim and scheduled an appointment for Monday to see a surgeon to have the “boil” lanced.
When I woke up Saturday morning, I knew something was seriously wrong. The pain was like nothing I had ever experienced, and my “anatomy” had totally changed. I woke my husband up and said, “we need to go to the ER now!” Due to COVID, he wasn’t allowed to enter the hospital and had to sit in the car and wait for updates. After being triaged rather quickly, they brought in the on-call surgeon, who happened to be the surgeon who I had an appointment with on Monday. I remember telling him at some point, “I have an appointment with you on Monday, I won’t be there” and we both chuckled.
I was informed that I had a serious infection and was very quickly whisked away to surgery. The infection went from my backside, followed the crease in my leg and came all the way to the front. It was Fournier’s Gangrene, I lost a good portion of my lady bits, and some muscle in my leg. The first couple of days were a blur. I had dressing changes three times daily with Dakin’s solution, packed with gauze. I had a catheter (that I ended up having for 15 weeks) and never moved more than two feet from my bed.
Thankfully the second day they moved me to a private room. There was a stream of doctors visiting and checking my wound, vitals, etc. I quickly learned that “beefy red” were two good words to hear when referring to my wound. I spent eleven days in the hospital and was transferred to a specialty hospital for continued wound care for nearly three weeks. After a while I was allowed to get off the bed, I started with walking the hallways and getting back my strength. After that hospital, I was sent to a rehab facility for nearly three weeks and then the real work (aka rehab) began. I worked my butt off.
After nearly seven weeks of being hospitalized, the rehab facility started allowing family visits and I was finally able to have a face-to-face visit with my husband. Sure enough, the next day a staffer tested positive for Covid, and visiting was shut down. But just a few days later my insurance company decided I was doing so well with my rehab that it was time for me to go home. I was scared sh**less. My husband was told that he’d be responsible for my dressing changes (at this point, twice daily) and he was insistent that he wasn’t qualified and didn’t want to do it. I know in my heart that he was afraid of screwing something up and making me sick again. The night before my discharge, he came to rehab to watch a dressing change. I had typed up step by step instructions for him.
When I returned home, I had three nursing visits a week, then two a week and eventually one a week. My husband did all my other dressing changes and became a pro at it. The nurses even complimented him. I had several visits to The Center For Wound Healing (within our hospital) to see the plastic surgeon’s PA. Each time she told me that I wasn’t ready for surgery to close up the wound and I became more frustrated and upset. One day she totally surprised me and said, “you’re not ready for surgery because you don’t need surgery.” My wound was able to heal nearly perfectly all on its own, without surgical intervention. The plastic surgeon discharged me from his care on New Year’s Eve and we celebrated with an elbow “bump” and two enormous smiles.
I’m not lucky to have contracted NF, but I consider myself lucky because of how uneventful my recovery was, that I had one surgery and especially because I have Diabetes. My only regret about joining this group is that I didn’t find it sooner than I did. I’m honored to be alongside such a wonderful, caring group of survivors.
