Infective Endocarditis

[StripeyKnickersSpottySocks]

Just wondering if anyone can tell me some positive/reassuring stories about people recovering from this. My dad has been in hospital for the last week and they now think he has this.

They not 100% sure though as all blood cultures have come back negative. He's very ill though and seems to be getting worse. Not responding to antibiotics, on oxygen, feeding tube, his blood tests do show he's got a major infection and he's got a septic rash. He's gone deaf in one ear and also blind. They think they will transfer him to ICU over the weekend.

Am really worried.

People do recover from this, if indeed that is the origin of the sepsis. Would be handy to get a definitive diagnosis though wouldnt it.
Its not essential as it wont affect the treatment.
How long has he been ill, and is he elderly?

He's been ill since Thursday last week, thought it was flu for a few days, then went to the GP on Monday who sent him to hospital.

He's only 63 and normally very well.

He needs ICU doesnt he.
Sooner they get him there the better. I only say that because i am an ICU nurse and it is by far the best place in the hospital to deal with what you describe. They deal with these things day in day out and would treat him in a timely appropriate way.
He sounds very poorly, but as i say, people do recover from this.

On a positive note, sounds like he is recieving good treatment on the ward, if he already has a feeding tube in (presumably they are feeding him through it?)
Is he unable to swallow or take medicines? and blood tests are bieng done and you are bieng informed of the results...that is very good.

Deany - the ward is awful. Sorry, but am very unhappy with the treatment he's getting.

He's only gettign the tune because an ICU outreach nurse came to see him yeserday and has got loads of stuff put in place for him. The nurses have been very un-proactive.

After 48hours of him getting worse I asked his nurse if she didn't think his a/b should be chanegd to other ones. She said that was up to the doctors. Fair enough, but I wanted her to ring the doctors and suggest it - but he had to wait till ward round the next day. They were just giving him kopake and was in pain so I asked if he could have oramorp as well and there was lots of eye rolling. It got sorted, but I just feel I shouldn't having to push so much. I spoke to the ward nurse 3 days ago about getting him some of those protein drinks and nothing was done

I really wish he could go to ICU, but they said as he doesn't need cardiac support, renal support or resp support at the minute then he doesn't need to be there. But ICU are on alert that if he gets worse then they'll move him there.

I just wish I could convince them to move him now!

His CRP is 423!!!!

Oh and they're not informing me of results as such. I work at the same hospital as a m/w and look them up myself!

He's had a lumber puncture and one of the readings (csf glucose one?) came back flagged as abnormal, think it was 6. But they said it was ok.

He can't really swallow. He can manage his oramorph through a straw but struggles with the co-codamol tablets. Also he can't pick the tablets up, they need breaking up and putting in his hand and they're not doing this. They even leave the oramorph just on his table. I came to see him and it was there, according to his script it had been there over an hour. He needed help to get the straw in it, etc. I think if I hadn't come noone would have helped.

ahh love, did you get the contact details of the outreach nurse? bleep number or telephone number?

I wrote a whole thing on are you confident with the ward etc, then decided against it and deleted it. But you have jsut answered all of my questions...sadly exsactly how i knew that you would.
It IS frustrating and so upsetting and stressful. You are not asking for much, just proper care for your dad.

You know, is there a HDU?

I didn't get details of the nurse, but sure I probably could when I back this afternoon. Do you think I should tell her that I'm not happy with the care on the ward?

Don't think there is a hdu.

yes, tell her your frustrations and what you need for your dad, the high protein drinks, help with medication and how worried you are about his blood results, his deterioration and the fact that he is bieng ignored.

If he isnt needing cardiac support now, he soon will be wont he with this level of neglect.

Has he seen a cardiologist? They'll need to do an ECHO to see if there are any vegetations on the valves.If they have beeen giving his Ab's for a while it may be the reason that his blood cultures are coming back negative. I'd be pushing for him to be moved to a cardiology ward if he's not appropriate for ITU at the moment. Would the deafness be anything to do with his Antibiotics? Some such as Gentamycin can cause ototoxicity.
I would definitely ask for details of the cardiac outreach nurse, or if you contact switch, they will be able to give you the bleep number - I would definitely be contacting them and epressing your concerns.
Re the ward situation, have you spoken to the ward manager about it? If you feel that your dad is still not geting the appropriate treatment then ask for details of the matron in charge of the area - that should put the fear of God up them. Also PALS are a good source of help and advice at this time.

I hope you start to see some improvement soon x

Thanks for all the advice.

He only went on gentmycin last night and had gone deaf before that.

He had an echo yesterday - was ok when her was on his back, ok when on one side, some noises when he lay on his other side - but not enough to really worry about. Apparantly, I don't understand echos!

Will ask about cardiac ward and ask to see matron today.

Am going back with his solicitor today as he wants to rewrite his will.

Stripey - it can be very difficult to get a definitive endocarditis dx. The cultures are notoriously difficult to grow - especially if they've been started on anti-b's already.

The echo is an ultrasound of the heart - the vegetation can often be visualised on the scan. I'm not sure what they're meaning about noises, other than an affected valve won't be working properly and will cause a murmur.

I'm sorry that your dad isn't receiving the best of care

Maybe it wasn't an echo then. They did it on the ward and there was a bit of paper with lines on it afterwards. I didn't see it actually been done though. Would it have been an ECG? Is that different? Sorry feel thick for not knowing but we don't ECG people in labour generally

Anyway have spoken to a nurse just now and she says if dad no better this afetrnoon he's going to ICU - so feel happier that they're not waiting for him to get worse before transferring.

ECHOs can be done on the ward, but they are not as accurate as those done in the department (It's exactly the same piece of equipment as you would use in midwifery for scanning babies,so it needs to be quite dark for the technician to see the images properly)
From what you are describing, it sounds more like someone has listened to his heart and done an ECG, they will not be able to diagnose IE but doing this alone.

Stripey - yes that was an ECG. If they suspect Endocarditis then they should be doing an ECHO. They can do one at the bedside. Hope he's on his way to ICU.

Hi, no still not on ICU.

They won't move him till he needs to be on a vent by the sound of it.

His CRP is down from 423 to 410. His BP is up, around 210/110. His BM is raised, was 13 but then later on 8.

Dr said that CRP falling is good. But I'm concerned its just a natural fluctuation. Dr says its a good sign that IV antibiotics could well be kicking in.

He's still pretty much the same. Drs are not saying its not endocarditis, not an ifection at all.

They think its some sort of antibody thing where the body is attacking itself. I haven't seen a Dr to have this explained though as they did rounds very early this am. I asked the nurse what was happening and she said she didn't know and didn't understand it and couldn't remember the long word the Drs used but they thought it was something maybe beginning with v. If it is this thing then they'll start him on steriods. He's had another blood test today which has had to be sent to a diffferent hospital and once the results for that come back thenthey should know.

Sorry he's no better Stripey. Hope the blood test gives them a better idea of what's going on.

The staff sound so dynamic It sounds like you'd be better off bypassing the nurses and ask to speak to either the reg or consultant to get to the bottom of it. I'm embarrassed by how useless they're being, and how they seem to be quite content to sit in their pit of ignorance!

Have a diagnosis, which I'm happy about as I feel maybe treatment will help now. Wegener's granulomatosis. Quite rare by the sounds of it. Just hoping no long term renal damage.

wEGENERS. How is his kidney function. Good news compard to IE as steroids and cyclophosphamide will probably get on top of this asap.

They were a bit worried about kidney function is bilirubin and creatanin were up. But he's on a fluid balance chart and the balance has been better the past couple of days. So finegrs crossed!