I beat an antibiotic resistant infection - but only just

Antibiotic resistance is not an abstract problem. It’s deadly and we can all do more to fix it

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My face is disfigured because of a car accident. But a broken health system and over-exposure to antibiotics also played a role.

The accident happened in 2004 when I was 25 years old. I was out for dinner with friends. On our way home our car spun on Republic Road in Johannesburg. It came to a dead stop against a concrete wall. I don’t remember much. But I do recall one of the paramedics asking me if I had medical aid.

I couldn’t answer because I was gurgling so much blood and spinal fluid due to multiple broken bones in my face, and injuries to my neck, back and internal organs. I had been resuscitated on the side of the road. But someone managed to tell the emergency services that I wasn’t insured so I needed to be transported to a public facility.

After being unconscious for three days, I woke up in Charlotte Maxeke Johannesburg Academic Hospital.

I had an incredible medical team in the high-care ward but my recovery was extremely hard.

After a year or two I could do normal stuff like drive a car or work again when my body felt physically able. But I also needed to mentally accept my facial disfigurement and visual impairment. To be restored to some sort of physical and functional normality I needed to have various types of facial prosthetics implanted. Because the head is a complicated area, I needed a large medical team, including a plastic surgeon, maxillofacial surgeon, Ear Nose and Throat (ENT) surgeon, ophthalmologist and prosthetist (ocularist) to name a few. By this time, two years later, I had managed to apply for medical aid to work with doctors in private practice.

My initial implant was an ocular floor because the bone under my eye socket had smashed to pieces. The second step was to create an artificial eye which we couldn’t quite perfect because the facial bone was asymmetrical. That led to an implant to bridge a wide gap of missing bone between my nose and cheek which couldn’t be restored at the time of my accident.

The surgeon performing the cheek implant was a maxillofacial surgeon. He inserted the implant slightly too high and cut under the lower eyelid. The cut caused scarred tissue to attach itself onto the cheek prosthetic and pull the eyelid skin down and lid outwards. In medical terms, this is called an ectropion, and it was bad news because it exposed me to bacteria which put my other prosthetics at risk of becoming infected.

To fix the ectropion, I needed a plastic surgeon to release the scarred tissue and perform a skin flap.

Two weeks following that flap surgery, I was out shopping and felt moisture on my face. When I reached my car, I pulled down the rear-view mirror and saw pus seeping out of the surgical wound. I called the plastic surgeon’s office in a panic! I was admitted to hospital. Surgery was performed to repair the tissue damage and clean the prosthetic.

Two weeks later, the infection came back again, but this time it was worse.

We performed the procedure again. Two weeks later it happened again!

I sought answers from several specialists who gave differing opinions. There was little communication between them. In between these consultations and surgeries, I was repeatedly prescribed antibiotics by some of them, often 14-day courses, while I waited to see the next specialist for his opinion.

Eleven months down the line of repeated surgeries and antibiotics, my plastic surgeon insisted the cheek prosthetic be removed.

I argued because the other doctors weren’t echoing that sentiment. I was due for my second sinus drainage surgery and he was working in the same hospital as the ENT surgeon. The plastic surgeon said, “I am going to come into theatre and if I see that infection is still on that implant, I am taking it out.” I took him with a pinch of salt because I hadn’t signed any indemnity form to approve this. But lo and behold, when I woke up the prosthetic was out.

This was the moment that alarm bells rang. I knew the prosthetic had been sent for testing and so decided to call Lancet Laboratories to ask for a copy. I couldn’t understand why my plastic surgeon had taken a risk like this.

Lancet emailed me the test results which made no sense to me with a bunch of “R’s” and “S’s” running down the page. Later, I learned that meant I was either “Resistant” or “Susceptible” to a certain type of antibiotic. A suspicious term at the top of the test also read, “MRSA”.

I did as most patients do when they lack information and googled “MRSA” to investigate what that meant. Up came “Methicillin-resistant Staphylococcus aureus” accompanied by the term “antibiotic resistance”. I had never heard either of these terms in my life.

Antibiotic resistance clearly was something I needed to be paying more attention to since I had been taking so many courses of antibiotics and in some instances quitting halfway because they seemed to not be working. I was flabbergasted that “antibiotic resistance” was not common knowledge to me, especially as someone with so many prosthetics in my face and a long-term medical condition that put me at high risk of bacterial infection.

I questioned why I was not told to ask for a test sooner when the antibiotics weren’t responding. Had I known more it would have helped me with the decisions that ultimately led to me having a section of my face amputated.

I had to wait out the infection for a year before doctors could attempt any more surgeries. I was put onto a course of vancomycin for seven days. This is a type of “last-resort” antibiotic used to treat resistant MRSA infections.

Methicillin and penicillin were the types of antibiotics the MRSA bacteria were resistant to, which was why we needed something different. Unfortunately, “last-resort” antibiotics can also be more toxic.

While I was recovering, I managed to find a craniofacial surgeon in the US called Dr Edward J. Caterson who had written an article in a medical journal about face transplants and infection management.

His secretary wrote to me and to my surprise said that Caterson was willing to speak to me because he saw cases like mine often. I had compiled my medical history into a few pages which I emailed him.

He explained that I needed as few foreign objects and I should have a a zygomatic osteotomy and then simple touch-up plastic surgery with the soft tissue. A zygomatic osteotomy meant we needed to cut the bone and realign it.

I visited numerous renowned doctors in Johannesburg until finding Professor Johan P. Reyneke who was a maxillofacial surgeon. His advice mimicked Dr Caterson’s. We performed the zygomatic osteotomy, and regrettably the infection did reappear.

I suspect it could have been worse if we used more foreign prosthetics. Test results showed I had both an infection and allergy. I was using an antibacterial ointment, chloramphenicol (branded as Chloramex), on my surgical wound at the time. We stopped this. Then we also rotated the oral antibiotics from one type to the next for three months.

Reyneke’ s fear was that I had developed a bone infection so we didn’t want to take any chances. One of the most important things that he did was to spend a few minutes explaining how to take my antibiotics more precisely. Timing was of the essence. His words were, “If your antibiotic is due at 5am, I want you to wake up and take it at 5am. Don’t give the bacteria a 20-minute window to mutate. Make sure you take the antibiotic at equal intervals.”

One of the other things I had to master was washing my hands and sanitising them every few minutes, especially when I was out and about. Clean hands were critical, especially since it was a natural habit to touch my face like most other people do, and that was where the deadly infection was.

Clean hands also meant I reduced the risk of spreading the MRSA bacteria to my family, friends, and community. This was equally important in hospital for other patients and medical staff when I was admitted with an infection.

Eventually, the infection started to clear, and I could uncover my face. I have become wary of surgery unless I absolutely need it and as wary of antibiotics unless I absolutely need them. A bit more “antibiotic-wise”, I understand they are not always a cure for everything and that I need to respect them.

It feels hopeless when the antibiotic you are taking doesn’t work. Many people lose their lives or become disabled because of antibiotic resistance. Recently, a study by the Global Research on Antimicrobial Resistance Project found that well over a million people a year die because of antibiotic resistant infections. Many of these deaths are in sub-Saharan Africa.

I’ve spent the most part of 18 years recovering from deadly infections and face-altering surgeries. For the last decade I’ve been advocating not only to improve communication about antibiotic resistance but also to improve patient and public participation to tackle it. There was so much more I could have done during my journey to understand antibiotic resistance, but until it happened to me, I was like most other uninformed people — defenceless.

Not enough is being done in South Africa to change policies that could have a major impact on the number of lives saved. Antibiotic resistance is a serious problem for human and animal health. This isn’t a recently emerging problem which we need to keep an eye on; it’s been neglected for years. We should take it seriously as an issue that influences nearly every aspect of modern medicine. Antibiotic resistance is a crisis we must all take personally.

Vanessa Carter is a patient advocate who campaigns to reduce resistance to antibiotic medicines.

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TOPICS:  Antimicrobial resistance Health

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