Endocarditis - antibiotics not working. What happens?

[UrsulaBirken]

My dad has been ill for a long time now. First bladder cancer, then encephalitis and now endocarditis.

It’s been so cruel. He handled all of the chemotherapy and radiotherapy for his bladder cancer mostly alone due to covid rules and was just starting to get a little bit back to near normal when the encephalitis hit. He’s never really recovered his cognitive competency and has been muddled ever since - having delusions and short term memory problems.

He now has endocarditis and has been in hospital and the antibiotics aren’t working (they’ve tried different types). The doctors say it doesn’t look good, but I don’t understand what’s going to happen at the end. He’s suffered so much and he’s so confused. My mum is being very strong but I know she’s in hell. I want to support as much as possible and be there for both of them. Does anyone here know?

The doctors have been quite vague so far.

@UrsulaBirken

My mum (78) died from complications of this horrible disease in December.

It is very hard to treat because it’s hard to get to the actual site of infection. often they will examine where it is in the heart and treatment goes from there…. Sometimes they can physically clean out a lot of the infection. So for example if it’s on a heart valve they will often look at opening up the chest wall and replacing the valve and clearing out the infection. This is what they did for my mum, although they were reluctant to operate and we would rather she had not been put through open heart surgery. They then put an antibiotic wash through my mums blood. She never made it out of the anaesthetic but was already in heart failure anyway and had an underlying heart condition that she never disclosed 😩

they told us that if the antibiotics didn’t work, the endocarditis would damage her valves and she would go into severe heart failure.

I hope this helps you. It’s frustrating when they’re not clear but one thing I learned is they don’t always have all the answers and People can deteriorate fast.

There is a fabulous endo support group on Facebook called endocarditis recovery (I think)

I hope your dad is ok- interestingly my mum was under investigations for bladder cancer when this happened - we always thought it had started off as a UTI.

One thing I had never realised was my mum became more and more confused and seemed to develop dementia, I was never sure if it was heart failure or stress. Ultimately she was asleep all the time.

I’m so sorry about your mum. Thank you so much for sharing this though. The doctors talk to us in such short bursts and, as you say, they don’t have all the answers.

Uncertainty is so hard. And watching him go further and further away from us in his confusion.

I will check out Facebook x

If you have any questions, I don’t mind seeing if I know the answer through my mums experience. She was in hospital for six weeks.

one thing I would have liked to have known: was when she started getting palpitations and delirium, we thought it was stress and we’re going on about Valium….but actually it was heart failure.

I also timed my visit every day for the end of the round and more often than not was able to grab the consultant.

if you have PoA, get the document lodged with the department- they will then speak to you freely. It’s worth doing.

I hope he recovers soon, it sounds like he’s been through the wars, poor chap