Patient Comments: Necrotizing Fasciitis - Experience


Please describe your experience with necrotizing fasciitis. Submit Your Comment

Comment from: Carrie, 0-2 Female (Caregiver) Published: September 05

I've lost my partner to necrotizing fasciitis (NF), the experience was overwhelming. He first started off with flu like symptoms and on the 5th day he was getting worse. So my parents came in my apartment and told him 'let’s go.' But first he showed my parents his leg, and it was discolored with a black spots on his calves. So we took him into emergency, and doctors couldn't figure out what was wrong with him, but when they did the NF had rapidly spread. They amputated his fingers, leg, and arm. He never survived the night.

Comment from: John L, 45-54 Male (Patient) Published: September 04

I had 11 surgeries for necrotizing fasciitis in two weeks. When I got to the hospital I was completely septic and my kidneys were shutting down. I remember getting into the ambulance but not much more than that. When I awoke the pain was over the top. I begged the doctor to cut it off, I am now glad he didn't. But the following day I awoke to the nurse changing my bandages, she told me not to look at it, but I did and wish I hadn't. It's all healed now but the scars run deep. I had skin graft from my leg, 80 percent of my biceps and triceps were removed.

Comment from: Lynnie, 65-74 Female (Patient) Published: January 04

I have heard of terrible stomach aches and pain from necrotizing fasciitis without any external manifestations but I can't find any information on this. It was featured on TV and I had all of the symptoms. I was heavy (lost 108 lb. through the ordeal) and had diabetes. The pain lasted for 8 months and I was never diagnosed. It finally went away. The symptoms are beginning again and I'm trying to get information about this disease internally, without any skin involvement.

Comment from: jen, 19-24 Female (Patient) Published: June 24

I was diagnosed with a blood clot, and 6 months later felt like I got hit by a brick wall. I was very sick but nothing was showing up. I went to the emergency room (ER) the next day because I was having some chest pains, CT showed no pulmonary embolism. I went home, sat over the weekend and went to my primary doctor on Monday. She couldn’t find anything wrong with me either, and by Tuesday night my leg was starting to swell. I went to the doctor first thing Wednesday and said something is very wrong with me, please check me out again. By this time I was in septic shock and was shipped to the ER and admitted by 2 am. I was Life-Flighted because I started coding, was admitted to ICU and had 4 surgeries in a week for necrotizing fasciitis. I was sent home a few days after the 4th surgery. They had closed my wound but with so much tissue taken out, my body was not able to heal properly and I ended back in the hospital for another week to open the wound and make sure it was not getting infected again. I then had a wound to pack 2 times a day, and I did that for 2 months. When it was just about closed I got sick again, and the one hour it took me to get to the ER I was in septic shock again, then started coding again at 2 am. Central line was placed and I was taken to surgery the next morning when a 12x9 inch chunk was taken out of my thigh. I had necrotising fasciitis again, this time it was strep G bacteria. I scared all of my doctors very bad because I was healthy again and knew I was feeling so much better, about to go back to work. I had skin grafts taken off of my other thigh and ended up being in the hospital for a month with that infection. I was in and out of the hospital over the next few months for small infections. I am not back to work full time but have been diagnosed with CRPS (complex regional pain syndrome) due to all the trauma to my leg. I am having surgery every 4 to 6 months now to take the skin grafts out in hopes that the CRPS will go away once the graft is out. Now the question is when I can stop antibiotics or if I will need to be on them forever. This is a very scary and traumatic infection to get and it has really changed my prospective on life. I am very lucky to be alive and watch my baby girl grow up!

Comment from: where he became infected. He didn"t have cuts or o, Male (Caregiver) Published: August 04

My brother entered the hospital on November 15, 2013 after originally being seen in the emergency room (ER) 5 days earlier for sciatica in his left thigh. His leg swelled severely and he was rushed into surgery when he returned to the ER. A second surgery the next evening revealed the necrotizing fasciitis had spread to his left gluteal area and also had begun to enter the lower spinal canal. A lot of tissue was removed from both his leg and buttocks and he was receiving large doses of antibiotics. Showing signs of extraordinary improvement, including standing and walking in place, we were hopeful for a prolonged, but definite recovery. Unfortunately, the infection had reached his brain cavity and he died on Christmas Eve. Doctors said it was from sepsis and Klebsiella. To this day we have no idea just how


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