- Necrotizing fasciitis
- Interviews
LMKuhn's interview
How did all start?
My mother had burning and redness on and around her labia. She got a prescription cream from a family doctor. It seemed to help. 2 weeks later she found a dime-sized abscess on her inner thigh. Within a day or two of that, she began acting strangely. She was incoherent and losing her balance and falling for no apparent reason. We called 911 and at the ER she was diagnosed with cellulitis and MRSA. A surgeon was consulted. CT and other tests showed there was a massive amount of necrotic tissue inside her perineum, abdominal wall, vaginal and labia area and on her thigh. Surgeries were performed and she was in ICU for a month plus before moving to a step down hospital unit where she continued to recover. She was sent home on March 2 with a vac (subatmospheric pressure dressing). I did not know what it was and had no idea how to care for her. We told her night nurse the day before she was sent home we needed time to make things ready for her return but they sent her home anyway, alone, in a snowstorm, in a taxi cab. She was home for 2 days and was unable to care for herself and became confused again about where she was and what the date was, etc. She had somehow removed the tube for the VAC. March 4th we sent her back to the hospital by ambulance. The afternoon following she had a cardiac arrest. On March 10, we were called to go into the ICU I made the choice around midnight March 11 to end lift-support and she passed away within the hour.
Do you already have a diagnosis? How long did it take you to get it?
It took my mother about 8 weeks to get the diagnosis between her visit with the family doctor who saw her labia/vaginal area and use of the cream to the first admission to the hospital where the surgeon discovered she had NF.
For what medical specialties have you been treated? What has been the most useful specialty for your?
My mother was seen by neurology, hematology, general surgery, nephrology and plastic surgery. I believe she may have been seen by others. She was cared for by a respiratory and physical therapy team also.
What has been the most useful thing for you so far?
There was nothing useful in our situation.
What have been your biggest difficulties?
She died.
How has your social and family environment reacted? Have your social or family relationships changed?
Our family is shocked and angry. We have a lot of concerns about standard of care and things not directly related to her diagnosis of NF. I believe events could have gone differently if the first doctor who saw her had done a pap smear or investigated the belly pain my mother was complaining of (rather than suggesting she was constipated and should take ducolax)
What things have you stopped doing?
N/A. She is dead.
What do you think about the future?
There needs to be more public awareness about NF,
So far, which years have been the best years in your life? What have you done during them?
I cannot answer for my mom but I know she loved her family, pets and had lots of life and love left to give.
What would you like to do if you didn’t have your condition?
N/A
If you had to describe your life in a sentence, what would it be?
Over. her life is over.
Finally, what advice would you give to a person in a similar situation?
PERSIST on every and any test or exam to make sure you aren't misdiagnosed or moved along because the wiating room is empty or the hospital needs your bed for another patient with better insurance.
