A brave 25-year-old has shared the constant pain she suffers as part of her ongoing battle with a life-threatening infection.
Katie Bennett-Hogg has been told she needs major surgery to remove her bladder, but long waiting times on the NHS mean she likely wouldn’t receive the urgent and life-changing surgery before the end of the year.
Katie has spoken of the agonising pain she faces almost daily after she was diagnosed with a multi-drug resistant unitary tract infection more than three years ago. As a result, Katie and her family are fundraising towards the £48,000 needed to undergo the bladder-removal surgery privately – which could be completed as soon as May.
“I’m getting sepsis every three weeks,” she told Teesside Live. “Being septic is horrible, you feel like you’re going to die – you feel really, really unwell. And it takes a long time to recover from it as well. When you are that unwell physically you go into survival mode but when you get a bit better you look back at what you’ve been through and it hits you mentally.”
Katie, who was studying speech language therapy at university in Sheffield, has Classical Ehlers-Danlos Syndrome. She began having problems with dislocations and joint pain when she was 16 and as the years went on began to have stomach problems.
“Every time I ate or drank I vomited. I lost a lot of weight and ended up in hospital to get a feeding tube put in,” said Katie. She’s also needed a central line directly into her heart and a surgical catheter – which became a “host to the infection”.
“The infection got stuck in my bladder and has never left. We’ve tried for years to get rid of the infections,” said Katie. “I’ve injected antibiotics into my bladder every night, I take IV antibiotics into my heart, down my feeding tube. We’ve tried wash outs and changes but nothing has worked.”
Now, as time has progressed, only one antibiotic – known as the ‘Dettol’ of antibiotics – works, but causes horrific side effects such as constant vomiting, bowel infections, intense migraines and bone pains. Around every three weeks the UTI worsens and she’s regularly contracting a dangerous blood infection, sepsis.
“We are really concerned because last time I got sepsis I was really unwell,” added Katie. “There’s only one antibiotic left that has an impact and if I become resistant to that there’s no treatment option.”
But there appears to be a “little light at the end of the tunnel.” A specialist at Newcastle’s Freeman Hospital has told Katie and her family that to manage the infections and increase the 25-year-old’s quality of life and life expectancy is to have surgery to remove her bladder.
The procedure, called a cystectomy/urostomy, will take the tubes draining urine out of the kidneys and create a new route out of the body using part of her intestines. She will then need a urostomy bag to collect waste products. However, long waiting times mean it’s unlikely that Katie will receive the surgery on the NHS before the end of the year. Katie said: “I’m genuinely concerned what will happen this year if I keep getting sepsis so often.”
‘I can’t believe how lovely everyone has been’
“I was a speech language therapy student at university in Sheffield and it was just my absolute dream. I did it for six years but I ended up in the ICU last year and I wasn’t able to go back to the course,” said Katie, who attended Sacred Heart Catholic Secondary in Redcar and Prior Pursglove College, in Guisborough.
“I had to leave and that just broke my heart. It’s been really hard on my family as well. I just don’t really have a life at the minute and I’m often too unwell to go out.
“When I have a really bad UTI or sepsis my bladder is just agony. I just drain blood through my catheters for hours afterwards, it’s really hard when I have the infections. But when I’m on the antibiotics they cause horrible side effects. There’s a short period between when I finish the antibiotics and before the next infection takes hold that I can do things. On the whole I’m pretty much stuck in the house now.”
More than £14,000 was raised towards the family’s £48,000 target. At the time of writing 529 people have donated to the cause on Go Fund Me.
The family are putting aside as much money as possible and donations will go towards the surgery at a private practice in London as well as the hidden costs of accommodation while Katie is in hospital, travelling from Middlesbrough, medication costs, consultations with surgeons/anaesthetists/dietitians/physio etc, and the cost of an ICU bed after the surgery.
“It’s almost scary to think about it because the impact the surgery would have will be massive,” Katie said. “There is a tiny chance that I could still have infections but we think they are mainly in the bladder and not in the kidneys. The hope is that without the bladder there I wouldn’t have the infections and it would basically mean that I could do most things – I could just live life again.
“I’d be able to go places and see people because I’m so unreliable at the moment. It’s almost impossible. I might be able to get back to my course, it would all be amazing if that could happen.
“I was quite unwell over Christmas and New Year, Emily in Paris came on Netflix and I just thought if I get through this I’m going to Paris. This is definitely the next place on the list.”
Katie says the support from her loved ones – including parents Madeleine Bennett and Mark Hogg, and siblings Hannah, 21, and 16-year-old Jacob – has been amazing.
“I can’t believe how lovely everyone has been. They’re really sweet and I really appreciate it. It’s £48,000 and we’re not expecting to raise that much. It’s hard because we know how tough it is for people at the moment so it feels wrong to us to be asking for money but we’re sort of at the situation where there isn’t another option. We don’t really feel comfortable with it but we don’t know any other way.”
To donate to the Go Fund Me page click here.