Peter Knox has been attempting to get rid of the bacteria attacking his body for the past sixteen years.
In spite of going through a double lung transplant and a “too large to count” roster of antibiotics, Knox is still plagued with fighting the same infection that he first encountered in his childhood.
“I first developed the bacteria attacking my body when I was ten years old,” Knox told i.
Over the next sixteen and a bit years that bacteria has slowly attacked my lungs and tried to kill me.”
The lung transplant
As a sufferer of cystic fibrosis, Knox has spent “a large stake of life” in and out of hospital due to complications with his health.
The genetic disorder affects the movement of salt and water in and out of cells, creating a build-up of thick sticky mucus in the lungs, which can not only devastate the pulmonary organ, but the function of the digestive system and the liver.
But nothing has harmed Knox’s life like the contraction of bukholderia gladioli, the rod-shaped strain of bacteria that was housed in his lungs.
The bacteria, which can prove fatal in people with cystic fibrosis, had become resistant to the antibiotics the 26-year-old was taking.
It was then he had a double lung transplant to remove the virus for good.
“I had the transplant last summer, which was meant to be the end of the infection,” explains Knox.
“But after my transplant, the infection seems to have hung around in my sinuses and other parts of my body.”
Living with an antibiotic resistant infection
As Knox’s immune system was heavily compromised during the transplant, it left him increasingly more susceptible to contracting an infection.
It was when his surgery scar became infected by the bacteria and started oozing pus that he was told that the infection that killed his old lungs was back.
“I didn’t know what to feel at the time. I was surprised. Because I knew I didn’t have cystic fibrosis in my lungs any more, they’d be able to get rid of it more easily. But my lack of immune system meant it spread everywhere else more easily,” he told i.
“The doctors then told me that the antibiotics were no longer working. The hardest thing is telling my parents this stuff. Ringing them after saying the antibiotics weren’t working any more, and it’s hard for them to hear. They’ve certainly had to contemplate the death of their child more than most.”
‘They’ve had to contemplate my death more than most parents’
Knox was then told that there was only one treatment option left – and it was only available in the US.
The experimental treatment, named phage therapy, uses a live virus to treat bacterial infections.
The viruses, which are bioengineered, specifically target the infection at hand, giving them a significantly higher success rate than antibiotics.
But Knox still needs to find a company who can ship over the treatment from America which could save his life.
“The NHS have done absolutely everything to get the treatment over here,” he told i.
“When they said they were trying for a week and couldn’t find anyone to import it, I was pretty worried. Getting me over there isn’t an option, it costs too much. I’m just trying to be as stable for as long as I can until the treatment gets here,” he added.
A fight for his life
Knox has seen three companies agree to transport the phages, only to cancel on him days later.
“At the moment, there could be a company in the pipeline, but concern over whether it is in the same state when it gets here as when it leaves the USA,” he explained.
“Because I’ve been on antibiotics for so long, I’ve now got kidney problems,” Knox explained.
“I’ve had to reduce antibiotics. If it got significantly worse, I’d need a kidney transplant. There’s about six kilos of extra fluid sitting on my legs,” he added.
‘We are doing everything we can’
“Traditional approaches to treat Peter’s multi-resistant infection were not working so we made the decision to think outside the box and investigate less mainstream techniques,” a spokesperson for Harefield Hospital told i.
We looked internationally and after consulting colleagues who have dealt with similar situations, both within our Trust and elsewhere, found a potential solution in the United States.
“However, this is a highly complex situation – the research institute in the States is isolating a virus to attack the bacteria causing Peters problems, specifically for Peter, which must then be shipped to the UK. We are doing everything we can to expedite this process and are pleased to see that Peter is currently stable and reacting well to his current treatment.”
“At Uni I used to love playing tennis and squash,” said Knox. “It would be amazing to be able to go out and do that again without coughing up blood or oozing pus from my chest.
“It would be amazing to go out and do stuff with my friends. I haven’t had that freedom for my entire adult life.”