Help Needed Ref Guidelines ref treatment for Patients with Suspected Endocarditis

[ral001]

Hello,

Am hoping someone here may be able to help.

My partner contracted Endocarditis in 2004 - which resulted in him needing a Aortic Valve replacement which was thankfully successful.
Resulting from this he was always careful (with dentists etc ) unfortunately he started to become very ill last Novemer with classic signs of Endocarditis again - shivers, weight loss, lack of apetite, fever.
After 7 weeks he was referred to the hospital and cardiac unit for treatment - there though he was given an echocardiogram which unfortunately detected nothing.
As it was just on top of Christmas the doctor sent my partner home (with a note referring him back to his GP )- where very sadly a week due to complications from Endocarditis (he did in fact have the condition) he had a fatal heart attack.
I am still devestated about this and actually seeking a complaint against the hospital and doctor - the doctor sites the fact he did a echocardiogram which found nothing (which I've since read is not always 100% and the lack of vegetation detected does not always rule out IE) and gave my partner a note for the GP as sufficient for a back up care plan.
The person helping me on this raised the point about if there are official guidelines for the treatment and diagnosis of Endocarditis. I was told on several occasions that anyone considered high risk ( who had contracted IE before) should automatically be admitted into hospital ready for treatment with intravenous anti-biotics though I cannot find this documented anyway.
While I have found several papers and articles which highlight the tests required (I saw the BSE recommended the use of both a standard Transthoracic echocardiogram and a Transesophageal echocardiogram (TEE) to effectively rule out IE in 2009 )- none state if patients should be kept in until Endocarditis has been ruled out.
Has anyone else been through a similar thing - or would anyone know of any official (or well known) papers or cases highlighting this ?

Anything at all relating to this esp to the fact that high risk patients should be kept in hospital not sent home - would be much appreciated

Thanks for taking time to read this - if you do have any helpful information it would be much appreciated
Again Many Thanks

R

 

[pellicle]

Dear ral001

My heart goes out to you at your loss, I lost my most dear wife due to an undiagnosed brain tumor little less than a year ago. I felt at the time that the medical system had failed her (and me) by not correctly diagnosing her condition. I believe that a number of factors will complicate your endeavors, not the least of which will be the medical system.

I wish you strength in your endeavour.

 

[Lad]

A simple blood culture would tell if suspected.

 

[newmitral]

Hello ral001,

My sympathies on your loss.

Speaking as one who very nearly died from endocarditis myself, I am familiar with the difficulties of diagnosing and treating it.

There are many key pieces of information missing from your post.

First - Did the hospital do a blood test to determine whether or not there was any blood infection present? C-Reactive protein and sedimentation rate markers can show an infection. These would be standard tests.

Second - Were they specifically advised that endocarditis was a possibility, and if so, presuming they found markers of infection, were they doing a culture on the blood to determine the specific bacteria present?

Third - if they did determine an infection was present, did they prescribe any sort of broad-spectrum anti-biotic (while they were waiting for the results of the culture) for him to take at home, and was he taking these when his fatal heart attack happened?

Fourth - How bad was his actual physical condition? It is certainly possible to perform the antibiotic treatment at home, even the 6 week intravenous treatment. I did that myself at home (the hospital installed a PICC line in a vein) following release from the hospital after my endocarditis-destroyed native valve had been replaced with a mechanical one. If he was strong enough and not exhibiting symptoms of immediate distress, outpatient treatment might not be unreasonable.

If the doctors were treating the infection properly, and it was reasonably determined via the echocardiogram, and other heart function tests, that he was in no immediate danger of heart failure (obviously an incorrect determination), then the hospital may not have been grossly negligent in sending him home to treat the infection as an outpatient.

Again, there is too much missing information in your post to offer any informed opinion. Also, treatment guidelines may differ from one country to another, so you may have to seek legal advice from an in-country source to get any sort of definitive answer.

Also, please note, that I'm not a medical or legal professional, and the above is just my opinion based on my own personal knowledge and nearly-fatal experience with endocarditis.

 

[ral001]

Hello,

Thanks to all who responded and for your sympathy expressed (and I also offer my condelences to pellicle on his sad loss)

I appreciate newmitral's detailed response and I will endeavour to reply to that

[First - Did the hospital do a blood test to determine whether or not there was any blood infection present? C-Reactive protein and sedimentation rate markers can show an infection. These would be standard tests.]

Yes the GP had conducted a blood test 5 days earlier which had indicated a high rate of infection - an anti-biotic was prescribed.

[Second - Were they specifically advised that endocarditis was a possibility, and if so, presuming they found markers of infection, were they doing a culture on the blood to determine the specific bacteria present? ]

Yes my GP was concerned (and her prime suspicion was) that Endocarditis was a strong possibility when she referred him to hospital and had mentioned this to the initial attending doctor - one blood culture was taken (which apparently was not positive) though I am still awaiting the full medical notes to check this

[Third - if they did determine an infection was present, did they prescribe any sort of broad-spectrum anti-biotic (while they were waiting for the results of the culture) for him to take at home, and was he taking these when his fatal heart attack happened?]

Yes the GP had prescribed one( I believe ) for a week - this finished the day after the hospital visit - so my partner had been taking no anti-biotics for 6 days before his heart attack

[Fourth - How bad was his actual physical condition? It is certainly possible to perform the antibiotic treatment at home, even the 6 week intravenous treatment. I did that myself at home (the hospital installed a PICC line in a vein) following release from the hospital after my endocarditis-destroyed native valve had been replaced with a mechanical one. If he was strong enough and not exhibiting symptoms of immediate distress, outpatient treatment might not be unreasonable.]

His physical condition was weak - he'd been suffering for 7 weeks - with the usual classic symptoms - night sweats, fever, shivers, loss of appetite, weight loss etc - he wasn't really well enough to have had treatment at home sadly.

Am coming to conclusion that there are no specific guidelines to this - and it is all down to doctor's decision - unfortunately we had one who didn't err on the side of caution - but I will try and push things through regardless with the complaint - I owe it to my partner

I really thank you all for your feedback and comments - it is appreciated

Thanks again,

Ral001

 

[Luana]

My partner contracted Endocarditis in 2004 - which resulted in him needing a Aortic Valve replacement which was thankfully successful.
Resulting from this he was always careful (with dentists etc ) unfortunately he started to become very ill last Novemer with classic signs of Endocarditis again - shivers, weight loss, lack of apetite, fever.
After 7 weeks he was referred to the hospital and cardiac unit for treatment - there though he was given an echocardiogram which unfortunately detected nothing.

7 weeks? That's absurd! The definitive test to dx endocarditis is a blood culture. Hospital admission means nothing in getting the dx. The blood culture results are what say yes or no and can easily be done as out-patient lab work. Sounds like he was grossly mismanaged.

My sympathies to you on the loss of your partner.

 

[start01]

I am writing this whilst in hospital with my second bout of endocarditis within a year. I was fortunate enough to catch it early this time round. Blood cultures are the way in which endocarditis can be diagnosed early. It is important to diagnose the exact strain of endocarditis (the microbiologists job). With my first bout I was given antibiotics prior to being diagnosed with endocarditis. This resulted in my bloods being clear, so was only diagnosed with a Transesophageal Echocardiogram (had a major murmor at the time) which showed up vegetative growth on the mitral valve. As my bloods were clear I was given broad spectrum antibiotics for 6 weeks (they couldnt diagnose the exact strain). This time round the strain has been diagnosed so the meds given are a lot more targetted, and am feeling a lot better quicker.

Every time i get a temperature or am not feeling well i visit my GP and ask to referred to the hospital to get bloods taken. When it comes to blood cultures they should take bloods 3 times, each time being several hours apart.

 

[Agian]

Take care.

 

[Gail in Ca]

So very sorry for your loss. It seems that many of us are misdiagnosed when we first present at an ER or urgent care with symptoms. I was told I had the flu and rotator cuff pain. The bacteria in our bloodstream works quickly to try to kill us! Only 1 week after my 1st symptoms, my urgent care doc saw me again and finally suspected endocarditis. I had blood cultures done and many other blood tests, urinalysis, ct scan ( I had severe head ache), and also very high INR.
I was sent to the ER for vit K shots. But, until the cultures came back, the ER doc thought I might have arteritis in my brain, not endocarditis. The cultures came back positive, I was hospitalized and they did many cultures a few hours apart on different arms that first day/night, I guess to be specific on the type of bacteria. I was given a TEE which showed no vegetation, but I did in fact have staph. lugdunensis, which was a very bad bug! I was started on one regimen through a PICC line, and then it was changed when my fever went up again in a week. They never did see vegetation on my valves, but I had to have them replaced/ repaired a few weeks after my antibiotic treatment of 6 weeks. I don't know why we are misdiagnosed at an alarming rate when we have prosthetic valves, and severely leaky natural valves and present with a fever, aches, joint pain, etc. Now I know to call my cardiologist if I have a fever again, and he will order the proper tests.