Wednesday, October 26, 2016

This Is My Story On Necrotizing Fasciitis

A lot of people don’t know what necrotizing fasciitis is, as a matter a fact, I am sure that a lot of people have never heard of it. Don’t worry, I was one of them. When I had the doctor in the emergency room tell me what I had, I just looked at him with a blank stare, because I honestly had no idea what he was talking about and I had no idea as to why he was looking so worried. There seriously needs to be more awareness about necrotizing fasciitis, because it can happen to the healthiest person out there and it can happen over the simplest thing. Here is my story of what I have gone through and how it all started. 

On the morning of December 19th, 2012 I was taken into the OR to have my tubal ligation. Now I was already in the hospital for 2 days since I had just had my daughter on December 17th, 2012. That afternoon I was told that they OBGYN was going to send me home, but I was able to talk them into letting me stay another night. Something to me was just off. Every time the nurse would come in to check on me, I would tell her that my abdomen was sore, that something didn’t feel right. But she just kept blowing it off and kept telling me that I just had abdominal surgery. Now I have already had abdominal surgery once before, I had my gallbladder removed back in 2006 and I never went through this much pain. If I wanted to sit up in my hospital bed, I was having the hardest time doing it myself, I had to raise the head of the bed just to sit up. If I had to go to the bathroom, I had to lower the bed all the way down, otherwise I couldn’t get out of bed. I couldn’t sit on the toilet, let alone get off the toilet by myself. But like I said, they all just wanted to blow it off and not listen to me. I even had the doctor tell me that “It’s all in your head, you just need to get over it.” Wait, excuse me? Did I seriously just have a DOCTOR tell me, the patient, that it is all in my head and that I needed to get over it? That is nowhere near okay. 

The afternoon of December 20th, 2012 I was sent home, but that didn’t stop me from literally begging to stay. I mean, obviously I didn’t feel right, because who wants to stay in the hospital that long. But again, I was told that I was fine and that I didn’t need to be there anymore. I was released at 2pm that day, by 4pm I was starting to ache from head to toe, kind of like I had to flu type of ache. That didn’t feel right to me, but I just kept an eye on everything. We went and put my prescription in to get filled, stopped by the place that we were living to drop off some things and then headed over to the in-laws to go and pick up our 3 boys and show my husband’s grandfather his newest great-grandchild. By the time that we left there, I was freezing. It didn’t matter how much heat I had blowing on me; I couldn’t get warm. When we got home, I checked my temperature, it was 103.1, so of course I went and called the doctor’s office, because this shouldn’t be happening. They told me to start keeping an eye on it for the next couple of days. I ate some food and then took my medication. Once the medication kicked in, I started feeling better. Now by this point, I had probably missed 2 doses. I started to look at my abdomen and the incision site, and it was red and warm to touch. So again, I called the doctor’s office and told them what was going on, and yet again they just tell me that I just need to keep an eye on it. 

On December 22nd, 2012 we had an appointment with Urgent Care for our daughter to get checked out. I had tested positive for Strep B and because her Labor/Delivery was a whole 61 minutes, they were not able to get the antibiotics in me, so she just had another follow up appointment to check to see how she was doing. I went ahead and checked myself in as well because my abdomen was so swollen, I looked like I was pregnant again. The Urgent Care doctor told me to head straight to the emergency room, that I had an infection and that they had the proper equipment to take a better look at it. So of course we gather all the kids up and head on up to the emergency room. The doctor there went and did an ultrasound. Once he got the images back from that, he informed us that there was NO INFECTION just a few pus pockets and that I was fine. He sent me home with pain medication and anti-biotics. We went to fill my medication and I went back home to relax some more. The afternoon of December 23rd, 2012 I remember having the feeling of something popping in my abdomen, but I just honestly blew it off as a gas bubble. I had trusted the doctor, so of course I didn’t think that it was anything serious, but come to find out, in the end, it was something serious.

On Christmas Eve, around 11:30pm I had finally felt good enough to go and take a shower, I mean it had already been a week since I had taken a shower and well I seriously needed one. When I got out it was after midnight on Christmas Morning. I went and checked my incision site, just to take a look at it, and there was a white line across it. It looked like any scab that got wet. I even went as far as yelling for my husband to come and take a look at it. I went to sit on the edge of our bed to dry off and get dressed, when I smelled something so foul. I was joking around with my husband, asking him if he farted or if one of the kids farted. He just kept telling me that I was crazy because he didn’t smell anything. I had gotten up to go across the room to grab a few articles of clothing and that is when he started to smell it as well. I was fully dressed come this point, so I thought that maybe it was my postpartum bleeding having an odd smell for something, so I go into the bathroom and I start to pull the waist of my pants down and that when I see it. I see pus and blood on the bathroom floor. My first instinct was to grab the closest towel that I could find and then I yelled for my husband. He came rushing into the bathroom and when he saw what was going on, he quickly got all the children up and dressed. I called my Mother-in-law and told her what was going on and that we were rushing to the hospital. Our Brother-in-law showed up at the hospital to take the kids from up and take them to my husband’s parents’ house. The emergency department was quick to get us back into a room and get me hooked up to everything. The doctor ran a bunch of tests, did a CT scan and looking over my ultrasound from my last ER visit (12/22/12). He came back an hour later letting us know that I had necrotizing fasciitis, that you could see the infection clear as day in the ultrasound from my last ER visit and that there were NO signs of pus pockets like the last doctor said. I was informed that I should have stayed in the hospital back on the 22nd of December, but that the doctor there didn’t read the ultrasound properly. He let us know that I was going in for surgery within the hour and that is when it hit me that this is serious. We waited for the General Surgeon to come in. I felt bad, he was in the middle of packing because he was going to be catching a plane to go and see his daughter for Christmas. Because the infection was due to a tubal ligation, they also had to wait for an OBGYN to come in for surgery as well. I was wheeled back for surgery and after that, everything I know was what I was told. My husband was scared and he was in the waiting room waiting to hear back on me. They were in surgery for 4 hours. The General Surgeon came out to let him know that everything went great and it looks like they got most of it. That I had a day, maybe two and it would have gone toxic. If it got to that point, well they wouldn’t have been able to do anything but put me on a morphine drip to make me comfortable until I passed away. It was scary getting that information. I would have ended up leaving my 4 children behind, something that I would never want to do. That night was the hardest. I didn’t get to be at home with my children, opening up Christmas presents with them, enjoying the day with them, nothing. Neil did bring the kids up later that day, but after that the kids were not allowed to come. Because I was wide open, my insides were visible to everyone, they had to do dressing changes and that was one of the hardest things to go through as well. It was so painful and I would never want to go through that again.
(dressings from my abdomen being wide opened and visible to everyone)

On December 26th, 2012 I went in for another surgery where they put in a wound vac in. The plastic surgeon that I had do this surgery was amazing and I would recommend him to anyone. But it was also VERY hard for me because as I was being wheeled into the OR and being put back into my room, there was nowhere there for me. I didn’t have any friends or family there. My husband had to work, so he couldn’t be there for me. The next few days I had to have the wound vac in and it was just really weird having that in. The way that it would fill my abdomen up with the water, swish it around, and then vacuum it out. 
(This was taken the day that the wound vac was put in)

On December 29th, 2012 I went in for what we were hoping was going to be my last surgery to get my abdomen closed up. My plastic surgeon told me that if they couldn’t get my abdomen to close up than they were going to have to do a skin graft and I would need to stay in the hospital longer. Again, I was scared, I didn’t have anyone there with me. If something were to happen to me on the operating table, there wouldn’t be anyone there to tell, they would have to call around and try to get a hold of someone. That is all that kept going through my mind as I was waiting to go into the OR. After the surgery, my plastic surgeon had the great news that they were able to close me up all the way and that they didn’t have to do a skin graft. On that same day I got the awesome news that I was able to see my kids again. I had been missing my daughter especially like crazy. She was a week old when all of this happened, this was the time to be having our mother/daughter bonding time and I was missing out on it. All I kept thinking was that maybe she would forget who I was in this short amount of time, or that because I wasn’t able to deal with her for while that she would be fussy when I would try to hold her. When my husband brought her to me, I reached out for her, got her into my arms and just cried because I finally got to hold my baby girl in my arms again. The boys were with family members still because they were all still having a hard time with this and the thought that they were going to lose their mom. After the wound vac was taken out they put in a drain tube that I had to keep track of all the fluid that was coming out. By the time that all the surgeries were said and done, they had taken out a 30x15x10 cm area of my abdomen.
(This was taken a week after the last surgery)

Finally, on December 31st, 2012 I got to go home with my family. It was great to be going home and getting to ring in the new year with my family instead of being in the hospital. 

This was one of the hardest things that I have had to go through. Because of it I now suffer from PTSD and severe anxiety. Every time I have a surgery, or I get a poke, scrap, scratch, etc. I am in fear that I may get necrotizing fasciitis again and that that time it may take my life. When I get a cut, scrap, poke, etc. I go into major panic mode and I start cleaning it out like crazy. If I see the littlest bit of redness or swelling around it, I always go to my husband and ask him to take a look at it because to me, it looks like it’s the start of an infection. 

We need to bring awareness about necrotizing fasciitis. Just because it is not something that happens that often doesn’t mean that awareness shouldn’t be brought forward about it. There are plenty of us that have survived, but there is also a good amount that have lost their lives because of it. Let us all join together and bring awareness to this scary disease that can happen just with the smallest thing as an ingrown hair, a needle poke, a fall on the cement, a surgery, etc. So please, join me in bringing awareness. If you or someone you know has had NF, please feel free to share your story. Let us all stay together and be there for one another. 

(This was taken one month after the closure)