Meningitis in your words

Susan Frances Funcke's story

  • Location: South Africa
  • Categories: Meningococcal
  • Age: Adult 25-59
  • Relationship: Self
  • Outcome: Recovery with after effects
  • After effects: Scarring - skin damage
Susan Frances Funcke

In 1983 I had just started training to be a paramedic in Johannesburg, South Africa – I was 27 yrs old. I had contracted an upper respiratory infection with a cough, but of course I just ignored it and carried on working as I loved my job. 

During the night shift I felt as if I was getting flu, my body ached and I had a temperature. My colleagues were extremely worried, so they took my temperature and it was 41C . They took the immediate decision to take me to hospital.

I remember arriving in A&E and being asked lots of questions. The doctor told me he was then going to do a lumbar puncture and a pelvic exam as they had no idea what had caused such a high temperature. I do not remember any of this.

The next thing it was daylight and I was in a small ward on my own. I noticed a few blotchy spots on my arm and thought that I had got measles. Because I had transported a patient to hospital with measles, I thought that was what I had. I had a very upset stomach and went to the toilet, only to feel so ill and faint. I pressed the emergency button and I don't remember anything else until I woke up in ICU with tubes coming out of every orifice and drips in each arm. I was later told that when they found me, my blood pressure was 60/20, no wonder I felt faint.

" I clearly remember having vivid nightmares, which I experienced while being resuscitated. Little did I know that the real nightmares were about to start."

I had been unconscious for about two days and had been given the last rites during this time. I clearly remember having vivid nightmares, which I experienced while being resuscitated. Little did I know that the real nightmares were about to start. I was told that I had meningococcal septicaemia, disseminated intravascular coagulopathy and acute respiratory distress syndrome, all of which carried a mortality of about 50%-80%. Somehow I survived in ICU and after two weeks I was moved to a general ward.

My legs started to turn a deep red colour and were extremely painful. I couldn't even bear the weight of the sheets on them, so my legs were left exposed. The skin on my arms started to peel off, my eyes were bloodshot and my one tooth had also gone pink, I was told this was because of the DIC, which is also an acronym for "death is coming". Fortunately for me it didn't, although in that nightmare in ICU it had. 

Over the next week or so, my legs became blacker and blacker. They felt like a tight band and when the physiotherapist tried to get me to stand the pain was unbearable. My arms seemed to be doing better, as the skin was flaking off and it almost looked normal underneath, except for a few deep areas which also went black. My eyes, tooth and lungs were also better. 

After five weeks, I was moved to the plastic surgery unit. I was scheduled for a debridement of my legs and all I knew was that they were going to take the black skin off.  Two hours later and I was back in my semi private room, feeling relieved that my ordeal was now over. 

Thirty six hours later I was told I had to have the dressings changed on my legs. I was fine with this as I felt sure my legs would look much like my arms, a bit scarred but normal. Gradually the nurse unwound the dressings and to my horror I was confronted by a pair of legs that looked like they had been a meal for a great white shark. My right leg was the worst, as the calf looked like a chicken drumstick with all the flesh and muscle gone. You could see my tendons, bones and veins in both legs and I could even see into the knee joints on both legs. My thighs had great chunks cut out of them and then I started screaming. The poor nurse did not know what to do, so she went to find the doctor on call. He came and sat with me for two hours, explaining what would happen and that eventually my legs would "fill out" or re- granulate as he called it, he said they would look okay after skin grafting.

I cried for six hours nonstop. I was devastated because nobody had taken the trouble to tell me at any stage of my illness what my legs would look like. I just wanted to die. I told them that I wished that they had not saved my life.

Then came the series of skin grafts. For some reason they thought I was allergic to Op-site, the dressing they put on after the grafts. They put gauze and bandages on all my open wounds and donor areas. I then got a hospital bug called pseudomonas and the dressings had to be changed every day. On the first day, as they pulled off the bandages and gauze, all the skin grafts came off as well, so it was back to square one.

Five times I had to go back for skin grafting, which meant more dressing changes, and more donor areas to find, so more scarring. The dressings took over two hours to do every day. This was very traumatic, not only for me but also for the nurses. In the end they were drawing lots as to who would do my dressings. Someone came up with the idea of doing the dressing in the bath, to try and soak the bandages first. So off we went into the bathroom where they first lined the bath with plastic (to avoid contamination) and four nurses lowered me into the tepid water. Gradually the water turned from clear, to pink, to red to dark red. In the end I was soaking in a blood filled bath that looked like a massacre scene from a movie. Some of the bandages came off, but they still had to pull at some of them, which just made my legs bleed even more. It was really gross especially if bits of skin floated off as well. Eventually I had full skin cover on my legs and then it was just a matter of rehabilitation. I spent four months in hospital.

One year on and I went back to work, qualified as a paramedic and met my husband. He was a Senior House Officer and I brought him a patient in A&E, he enquired about the long scar on my forearm and I told him that if he thought that was bad, he should see my legs. I promptly rolled up my trouser legs and showed him. I think he was quite surprised and so was I, because I would not normally show anyone my legs.

We eventually got married and we have three sons Matthew 21, Jonathan 20 and Daniel 16. I still hate my legs but I have a wonderful family who love me for who I am.

Susan Frances Funke
January 2011