While the doctors cannot tell me how I contracted necrotizing fasciitis because they do not know, I am pretty sure it all began on Saturday, June 4th, 2016. That was the day I took my two boys strawberry picking while my husband, Josh, played golf with a friend. We had a great day and made lots of delicious strawberry desserts. That night, I started to feel like I was coming down with something. I didn't feel great that Sunday or Monday, but I powered through. Tuesday, I had this weird pain start on my right side. It was also on Tuesday that my oldest son (age 5 at the time) came down with strep throat and my youngest (age 2 at the time) came down with hand, foot and mouth. I took the boys to the pediatrician, got them the antibiotics they needed and went home.
Wednesday, I went to work not feeling great, and ended up leaving early because I had a fever and chills. I came home and went right to bed, missing my oldest son's last t-ball game of the season. I thought I would tough it out and stayed in bed Thursday and Friday with a fever and chills that would come and go. I also had this really weird pain in my right side that sometimes required me to use my left arm to move my right arm. Saturday morning, still not feeling well and having not really slept the night before because of the weird pain in my side, I went to a local urgent care center. I didn't have a fever, but they did a chest x-ray because they thought I was coming down with pneumonia. They also did a flu swab that came back negative (which I now believe is what saved my life...more on that later). They sent me home with a Z-pack, a muscle relaxer (because the x-ray showed nothing, they thought I had a pulled muscle in my right side), and hydrocodone for the pain. Back to bed it was and I suffered through to Sunday.
On Sunday, I finally called my primary care physician to make an appointment for Monday because the medication the doctor at the urgent care center gave me wasn't working and something had to be wrong. The nurse on the phone originally told me my symptoms sounded like the flu, but that I had missed the time frame for Tami-flu. At that point I remembered the negative flu swab and decided to make an appointment for Mondaymorning. I remember forcing myself out of bed to watch Game 6 of the Stanley Cup Playoffs with Josh that night, but I am pretty sure I slept through most of the game. (I do remember the Pittsburgh Penguins winning!)
Monday morning I woke up and was all out of sorts. I remember barely being able to stand in the shower and having to lay down before I could get dressed. I put on no makeup and barely was able to dry my hair. I was very antsy to get to the doctor, but so weak I could barely walk (I found out later I was septic by this point). The doctor took one look at me and immediately knew something was wrong. My blood pressure and pulse were through the roof. He called an ambulance to take me to the hospital and I remember being really scared. ***From this point on, a lot of the rest of the story is what others have told me because I have no real memory of it.
I was admitted to this hospital as septic with a bad case of pneumonia. (I have come to find out that NF can mask itself as pneumonia and that that pain I had in my side was the first sign that I had NF). Instead of getting better, I continued to decline. I needed a breathing tube to breath and I went into septic shock. My organs began to shut down. Finally on Wednesday morning a "spot" appeared on my right side and it continued to grow...they were tracking it with a sharpie marker because it just kept getting bigger. It was at this point that the ICU doctor at my local hospital knew they could not treat me and made arrangements for me to be life-flighted to the Shock Trauma Center in Baltimore, MD. Thank God for that ICU doctor because I would have died without that transfer. When Josh and mother showed up at our local hospital that day to see me, they were told to go home, pack a bag and drive to Baltimore as fast as they could, that I was being life-flighted to a hospital there and that I may not survive the flight. I can only imagine what this did to Josh and my mother.
Only a week before I was a healthy wife and mother...now I might not survive the flight, let alone what was coming next. My neighbors, who are two of the best friends I could ever ask for picked my kids up from school and had to face the questions about where were Mom and Dad. My in-laws were on their way from South Caroline to get my kids and take them back to South Carolina with them. This wasn't unusual as my boys usually spend a few weeks with Grandma and Pappy at the beach during the summer, but I can only imagine what they went through knowing they might have to tell my kids that their mom did not make it.
When Josh arrived at the Shock Trauma Center it was a whirlwind for him...he pretty much told the doctors to do whatever they could to save my life. He signed all the papers, one of them being for an experimental study of a new drug being tested for NF. He met only briefly with Dr. Sharon Henry who told him she would do everything in her power to save my life. I was taken to surgery where they removed a large portion of my right torso. After surgery the doctor told Josh and my mother that the next 48 hours were critical and that I may not survive. My mother has told me that the ICU nurse that night never sat down and just kept telling her that if I lived 10 minutes, I could live 10 more minutes. Over the next 2 weeks, I had 5 or 6 more debridement surgeries and had a wound vac set up. I also spent A LOT of time in a hyperbaric chamber. The doctor in charge of the hyberbaric chamber told me that I was the sickest person they ever had in the hyberbaric chamber. I believe this treatment played a big role in my recovery. I was in a coma for almost 2 weeks.
I, like many NF patients, had some very terrifying dreams while in the coma. Ironically, the only time I met Dr. Henry was during what I thought was a dream but as it turns out, was right before my first surgery. I opened my eyes, saw her and she clearly said, you are going to be OK (or at least that is what I remember). Once I was brought out of the coma, I still had the breathing tube and it took some work with breathing treatments and time to get that thing out. Once it came out though, I remember being much more coherent, although very sore and tired. I had a few more "surgeries" that were used to change my wound vac and the final surgery was to do skin grafts. The doctor took the skin from my back to cover the wound on my side...a wound that runs from under my arm pit to my waist and is 8 inches wide at its widest point. Originally the doctor's told Josh that I would like have to go to rehab, but I pushed myself in the hospital to walk again and to do the stairs and so after a month long stay and 9 total surgeries, I was I was released from the hospital to go home on July 12, 2016.
Once home, my mother stayed with us for 6 weeks to take care of me because my husband had to go back to work. I had a friend who set up a meal train for us to make sure we didn't have to worry about cooking...this was a huge blessing. My mom did my daily wound bandaging and was basically my nurse. She was also a confidant, a supporter when I needed it, a pusher when I needed it and a shoulder to cry on when my hair started falling out (among the hundreds of other reasons I would cry on a daily basis). She was wonderful and I do not know what we would have done without her. Fast forward to September...my mom has gone back home to her life, my kids are back with us and my oldest is starting kindergarten. I finally have a script for physical therapy because I could not use my right arm very much. The doctors had to move my pectoral muscle and remove lymph nodes. As a result, I will deal with lymphodema in my right arm for the rest of my life, but it is a small price to pay to be alive. Therapy started I think in mid-September and went all the way to mid-December. I also went through lymphodema therapy to get the swelling in my right arm under control. These months were not easy. I was on a long term low dose of Oxycontin to deal with the pain. I was also trying to make things as normal for my boys who were now 6 and 3, thrilled to have their mom home but not really understanding what had happened to her, why she had to wear this 'thing" on her arm.
After six long months and a lot of hard work, I finally have almost full use of my right arm. I was able to return to work on January 3, 2017. I still had to return to the Shock Trauma Center for a few follow-up appointments but I was released from them in mid-March 2017. I thank God every day for all that I have. I am so blessed to be alive. I am blessed to work for the Republican Caucus of the Pennsylvania House of Representatives. The amount of support I received from everyone there was overwhelming and I am very blessed to have such a great job and co-workers. I still have some issues (I have had a few bouts of cellulitis in my right arm due to the lyphodema and if I over do it, my right shoulder lets me know), but I am alive!!! I wake up each day thankful to be alive, to be able to raise my children and watch them grow, to have such a wonderfully supporting husband who has been through so much and who continues to love me the way I am, and to have such a wonderful group of friends and family. I will continue to live each day to the fullest, because as I unfortunately almost found out, life can be too short!