My endocarditis, January 2012

[Tick Tock Tick Tock]

Almost exactly a year ago, I was diagnosed with infective endocarditis and hospitalised for six weeks whilst treated with anti-biotics - the names of which escape me now.

Anyway, it's always been a bit of a mystery to me how I 'caught' this damned condition in the first place.

However, I do have a history of heart problems, starting back in 2000 when I had my triple bypass at the age of 38. In the later years that followed, I found out that I had aortic stenosis, with some calcium build up on the mitral valve.

Among the many questions the docs in hospital asked me was if I had been on holiday anywhere exotic (no), did I take drugs intravenously (no), had I recently had a tattoo (no), and had I had a nasty cut (no). So there never was an explanation of this event. However, I am given to understand that aortic stenosis disposes one to endocarditis - can any verify this?

In the last year, I haven't been feeling exactly 100%, and my cardiologist tells me that there has been 'some deterioration' in my heart's capability since the endocarditis a year ago, but she didn't specify in what way it has worsened. I had a cardiac MRI about three weeks ago, and I await the results of that. The valve was not destroyed by the bug last year, so in that respect I am lucky. The cardiacs say they would not be keen to carry out a valve replacement or repair unless absolutely necessary, and I can understand that. This is based on the fact that I have had the bypass and so have been chopped up quite a bit already.

I'm just typing this to share, really, I don't have particular questions (apart from, 'Why me?!!!').

 

[ski girl]

What bacteria did you have? I got acute endocarditis in September 2011 that took me from running a 12km race on Sunday morning, to a fever of 40C that night, to hospital on Wednesday and an emergency redo of the previous year's valve replacement on Sunday (one week after running the race).

People with bicupsid valves and artificial valves are indeed more prone to endocarditis on their valves than the rest of the population.

I had Strep sanguinis which is a common mouth bacteria, so the theory is that I must have poked some through when brushing/flossing and it took up residence on my artificial valve (which has no blood flow to it, so the body's natural defenses can't get to it). In my case I had 7mm thick of growth on the valve and my coronary artery was 60% blocked by this growth. I also had an abcess in my heart full of bacteria and I only had a 30% chance of making it.

So really, you got off lightly!

The advice I was given later was that I need to use an anti-bacterial mouth wash before each time I brush, then wait a couple minutes for it to fully kill everything before I brush and floss. That's something we should probably all be doing - if I was less fit, healthy, and young, I would not have survived my bacterial zoo!

 

[Tick Tock Tick Tock]

I was strep viridians. I had insane sweating at night, yet shivering during the day, went off my food and really run down. It was found that I did not have an abscess (as you say, lucky old me!)

I don't have a bicuspid valve (presumably that is the aortic that that refers to). TOE showed 8mm growth on the aortic valve, with much less growth on the mitral.

Oddly enough, I have had bad bleeding gums in the middle past, but nothing that I remember around the time of contracting the illness, which i find odd. My gum condition has been very good since just before the episode and since.

I don't envy you.

 

[VegasBAV]

I was strep viridians. I had insane sweating at night, yet shivering during the day, went off my food and really run down. It was found that I did not have an abscess (as you say, lucky old me!)

I had the same thing. Strep viridans (sanguinis) loss of appetite, night sweats, loss of energy.

Is the standard protocol in the UK six weeks of hospitalization for this? I was in the hospital a week and then given a PICC line to inject antibiotics at home over the next four weeks. I actually felt fine after a few days of antibiotics, so six weeks in the hospital would have been mind numbingly boring.

 

[Tick Tock Tick Tock]

I too felt pretty normal again after a few days's treatment. I can't remember how long it was but I was then given a PICC line too, which made life a LOT easier, but they wouldn't let me home, so I was stuck there for weeks on end, missing my family and all the rest of the angst you get in hospital. Some talk was made about possibly having the drugs at home via a nurse visiting or whatever, but in the end they kept me there.

I was pretty boring at times, but I got around and talked to other patients, and watched them come and go (one 'went' to heaven in the first week, it was then a mixed ward of various illnesses).

 

[Forrest]

Sorry to hear of your endocarditis and what you had to go through. My bacterial endocarditis involved Strep Viridans, a fairly common oral flora type of bacteria. Mine entered my blood stream and eventually my heart due to a tooth extraction, I had a cracked tooth under a crown that was inflamed and needed to be removed promptly. Even that doesn’t mean you will necessarily contract endocarditis, it’s still a bit of the “unluck//luck of the draw” kind of thing. It’s wise to take doctor recommended precautions, have good oral hygiene (which I’ve always had), take prescribed pre-meds before dental appointments, take care of wounds, support a good healthy immune system and know the symptoms and act promptly if you come down with suspicious ailments. I had basically diagnosed myself within less than two weeks of my dental procedure, went in to the urgent clinic explaining my symptoms and my hunch that I had endocarditis, they confirmed that I indeed had it through a blood culture, was hospitalized for a few days and treated for another month with strong antibiotic home infusion therapy via a PIC line that went from my bicep to dangle in one of my heart’s atria. This was a few months before I had my native severely stenotic aortic valve replaced. The treating doctors told me I was very lucky in that I acted so promptly to prevent serious damage. I had subacute endocarditis, if you contract “acute” endocarditis the damage often moves faster and so it can be even more insidious. All types can possibly be fatal, but I believe they are getting better at treating the aggressive cases.

I believe endocarditis can come from oral flora, intestinal flora, genitourinary tract and even skin flora. Those are just the ones I’m familiar with, I believe some internally used medical devices that can sometimes cause an infection could also be a possible source. Endocarditis can be bacterial (e.g., certain strep or staph) or non-bacterial (fungal). It’s a complicated subject, but at least it’s of relatively low occurrence, but very dangerous for those with prosthetic heart valves. As others have said, heart valve patients are more prone to contracting endocarditis. But it’s good to remember that we also have immune system barriers that usually protect us.

I am no expert on this subject, so please research or consult further if interested. I believe rough calcified heart valves, stenotic valves, leaky valves and weakened hearts make the heart vulnerable to having certain bacteria that have the characteristics of liking to hide in the heart settle onto heart parts, especially those parts that don’t have good blood flow where our immune system is challenged to attack it. Even healthy normal shaped native valves don’t get much dedicated blood flow. But healthy hearts tend to pump blood through more smoothly without much back lingering or pooling, so occasional germs cycle through quickly and our immune systems tend to knock out transient bactermia before they get a chance to set up camp (colonies of vegetations). I believe it’s when you have artificial valve sewing cuffs, sticky rough valves with very turbulent flow, scarred heart tissue or even blood that sloshes back and forth (like most of us to varying degrees) that it’s not ideal. But even there I believe the incidence of endocarditis is of relatively low occurrence, but significantly more frequent than the regular population. It’s because we as heart patients have more to lose that we need to listen to our cardiologists about what precautions we should be aware of, and know the symptoms (e.g., fevers, etc). Both prosthetic valves (tissue and mechanical) can be damaged by endocarditis, along with other parts of the heart (e.g., heart wall). I stay aware of the symptoms and take practical precautions, but other than that I personally don’t let it consume me in worry, but if you ever get suspicious symptoms folks like us can never take the matter lightly.

There’s more to be positive about when it comes to the miracles they are doing with our hearts. Best wishes to all in 2013 :thumbup:.

 

[Tick Tock Tick Tock]

Thanks Forrest

You are certainly well up to date with info on it as far as I can see!

I certainly had no idea I had a pre-disposition to endocarditis - pretty sure I did not know I had this aortic stenosis, or if I did, the import of dental care did not occur to me.

Heart surgery is one of those things that still continue to amaze me. Got a feeling the learning's not over yet!

Happy New Year and good heart health to you all too.

 

[triff]

Re: My endocarditis, January 2012

Hey all,

I spent 7 weeks in hospital over May/June 12 which was eventually identified as infective gram negative 'haemophilius endocarditis influenzae' at a recent checkup with my cardiologist. Six months on I have a mechanical mitral valve (SJM), I'm back on my bikes, planning a fundraising trek to Peru with some friends and pretty much living a normal life, but I still have zero idea what could have caused it.

I went from being apparently completely healthy to barely able to move overnight. I had sweats/shivers, high temperature, aching joints, pounding headaches, visual aura migraines maybe 5-10 times a day, lack of appetite/energy, hallucinations and a bunch of other symptoms, and they all hit me at the same time, it was like the hangover from hell×1000...

I spent a week trying to get help (first my doctor, then a visit to A&E who also sent me home) before on the 9th day I was convinced by friends to call an ambulance. I then spent 3 weeks on IV Vancomycin, Streptomycin and some other antibiotics whilst having twice daily blood cultures taken and steadily getting worse, I can hardly believe its me looking back at photos. I was asked all the normal questions - do you inject drugs, any history of heart problems, any dental issues etc - to which all the answers were no. I was still wracked by fever, not improving, there were no indications of where it had come from and I had no idea how serious things were. An infected molar was removed by the maxfac team at my first hospital as a precaution but they said it was not likely to be the cause. Apart from blood cultures and IVs that didn't do much, I pretty much spent a full month in the process of dying, later on with septic emboli breaking off from the vegetation on the valve and setting up shop in my brain, spleen and kidneys.

It wasn't until my usual team of doctors was away for the Jubilee weekend and my lungs started collapsing that a very astute locum doctor sent me for a chest xray then a CT, then before I knew what was going on (and I was still falling to bits at the hands of the infection) all these people I didn't know were throwing strange words like "cardio-thoracic", eep!

So thankfully I was transferred to a much better hospital (the London Chest Hospital) in a different trust. I met my surgeon Alex Shipolini that night (cue: mechanical or tissue?) who was a bit baffled why the other hospital had let me deteriorate so far without operating, and was in theatre in the morning but after a transesophageal echocardiogram it was decided the risk was too great and then was sent to ITU while they fed me "Domestos grade" antibiotics (that's a brand of bleach). Two days later I went in again and had the valve replacement, which was thankfully a success.

I did spend another month in hospital with some complications from weight loss, fluid on my lungs and subsequent draining, some funky heart rhythms (tachycardia, full then partial heart block) etc, but I think a combination of having an amazing surgeon/team who actually wanted to do a better job than the first hospital and because I ended up as a bit of a project for them having apparently got so close to death, they probably kept me in a bit longer than they normally would have. Maybe also to cover up for any potential holes in my previous team's care strategy, who could say...

I didn't get a match from the blood cultures until probably a week or two after my op, then suddenly my doses all changed and shrank significantly and my infection markers started to fall and eventually I started to rid myself of the endocarditis and feel human again.

The funny thing now is I never knew until then that I was born with a heart murmur and aside from some curiosity, I still have no idea where it came from and may never do. I am told this likely would have happened to me sooner or later, so even if I could go back and undo/avoid it all, I'm not sure I would. I think there's a lot to be learned from going through something like many of us here have and knowing you're not the sort of person to lie down and take it, whatever life throws at you.

All the best for 2013 to all your valves, tissue, mechanical or natural

 

[Tick Tock Tick Tock]

I hope to God I don't end up in a hospital where no-one seems to know what they're doing. That is terrible.

I'd forgot to mention that my episodes of sweating, lack of appetite etc etc went on for some time, about which I did nothing (why? I don't know, I thought I was just under the weather!) until one Saturday morning, when I woke up and had these shooting pains in my heart area. This alarmed me because of my cardiac history not being so good. They only seemed to happen when I inhaled, not exhaled...

The paramedics were brilliant, and got me off to hospital A+E tout suite, but on the way one of them said he thought I might have pleurisy. Well, this was also considered by the consultants in the hospital until lab tests showed it was in fact endo'. Strangely enough, I think I was also treated as a bit of a medically oddity too - not something they saw every day.

Anyway, top marks to my team, and sorry to hear you had a bad experience in London.

 

[Forrest]

Triff, that is one amazing story of survival! You and Tick Tock (original poster) illustrate how it’s easy to be left in total uncertainty. I was lucky I guess, I had just been informed to my complete disbelief that I had a congenital heart condition (very stenotic valve) less than two months prior to my tooth extraction. So I had crammed on what my condition would mean to me, one thing I researched was “what the heck is endocarditis?”. Then in a beyond surreal experience where I started to come down with symptoms post dental procedure, I went to the urgent care clinic where I told the intake person “I think I have endocarditis” (I think she may have doubted me), but the examining urgent care doctor took me very seriously as he ran tests and kept me there for half the day until he admitted me to the hospital.

It’s not completely unusual, as several on this forum can attest, that a person who doesn’t yet know they have a pre-existing heart condition can slip by and get misdiagnosed. In most med schools it’s emphasized that endocarditis is in the top of the list of dangerous illnesses that doctors can’t afford to miss. I think this underscores why it’s a good idea to tell doctors that are unfamiliar with us about our heart conditions.

 

[ski girl]

Holy s&^t Triff that's an incredible story and what an indictment on your first medical team. When I got sick I had the same stuff - fever, shivering, total lethargy, violent shaking - I went to my GP and told her I had the flu and she disagreed and called my cardiologist (who I am even more impressed with after reading your story!) and he told me to get into hospital immediately. I feel very lucky for the standard of care I got after reading some of the horror stories on here!

I'm not one to panic about things but the next fever I get will definitely send me into a panic, which is probably not a bad thing!

Very glad to hear you're OK now.

 

[pellicle]

Hi

Almost exactly a year ago, I was diagnosed with infective endocarditis and hospitalised for six weeks whilst treated with anti-biotics - the names of which escape me now.
...
I'm just typing this to share, really, I don't have particular questions (apart from, 'Why me?!!!').

some quick reactions:

• that's just terrible
• I notice from your location you're in the UK, I just had a cardiac nurse from the UK tell me that endocarditis is significantly more prevalent in the UK than it is in Australia (where she says its rare by comparison). That must be cause for query in itself
• maybe it won't help much but I've been asking the why me of myself quite a bit

I had a mechanical valve fitted as a result of diagnosis of an aneurysm of the aorta, that went ok, then a few months later my father died of cancer (only diagnosed during the period of my surgery) then shortly after that my wife died from an undiagnosed brain tumor. To cap it all off my surgery has developed an infection which was clearly present from the surgery and I've just been in hospital for a debridement and am still on antibiotics and having dressings changed regularly.

my only good news is that this seems to be 'going well' now.

so sorry to hear of your story, but as you can see 5h1t seems to happen to some of us. I wonder why me as much as you I suspect.

I know that I can't help you with any other words, but perhaps knowing you are not alone in the 5h1t may help to at least ease it.

Should you be feeling as bleak as I have been, perhaps my blog entry on that topic may help you a little.
http://cjeastwd.blogspot.com/2012/12/difficult-subjects.html

my chest wound (debridement) is progressing like this
http://cjeastwd.blogspot.com/2012/12/chest-wound-progress.html

I do wish you all the best, feel free to PM me if you wish to generally chat about "5h1t" any time

 

[pellicle]

Hi

triff, what you say here seems to give some strength to what the nurse who changed my dressings yesterday said. The UK medical system is rather stuffed.

Seems the Govt is trying to replicate that here with ours ...

Hey all,

All the best for 2013 to all your valves, tissue, mechanical or natural

your attitude is an inspiration. Thanks for helping me stop looking at my navel

 

[OldManEmu]

Triff
7 weeks in hospital and then only when the regular team went on vacation before someone worked out what was going on!!.
I had sub acute endocarditis for 9 months before I was hospitalised. Even then I had no vegetation on the valve. I had only had one blood test that was positive to strep and this is what lead to my first hospitalisation. After treatment for endocarditis and being referred to a surgeon for the leaking valve. When surgery took place the heart showed evidence of having had 2 abscesses and the valve was in such bad condition that they thought I may have still had an active infection and I was recommenced on antibiotics. I was put on Gentamicin and Vancomycin, One for gram negative and one for gram positive infection until the valve was cultured in the lab and cleared of active infection.

 

[triff]

triff, what you say here seems to give some strength to what the nurse who changed my dressings yesterday said. The UK medical system is rather stuffed

I wouldn't agree with that, I was unlucky with my first hospital (and I am writing to them in the hope of maybe helping someone in the future in a similar position) but with regard to my care at LCH I don't think I'd still be around if I'd been anywhere else but in east London at that time and ended up somewhere different. So in that respect, it's a testament to the NHS and the people who looked after me at the London Chest that I am able to type this now.

 

[triff]

I was put on Gentamicin and Vancomycin, One for gram negative and one for gram positive infection until the valve was cultured in the lab and cleared of active infection.

Yeah I guess that's why they didn't identify my flavour until after the op, and even then it was a week or two. My surgeon actually said to me on the day of my release "the infection's gone, its in a bucket" (and made a throwing over shoulder action) but it must have been in a lab. Gentamicin was the other one I was on, i guess they're pretty standard until they identify the specific critter and whack it with the right shaped hammer.

 

[OldManEmu]

Triff
With my initial hospitalisation I was treated with penicillin while in hospital for the infection; however this was required 3 times a day. After I was discharged it was Ceftriaxone for 4 weeks with a daily visit at home from a hospital nurse. Gentamicin and Vancomycin are like the nuclear bombs of antibiotics they are last resort medications. Gentamicin leads to deafness and/or renal failure in a percentage of patients after several weeks of use. Vancomycin resistance is a growing problem from overuse.

 

[triff]

Re: My endocarditis, January 2012

Gentamicin and Vancomycin are like the nuclear bombs of antibiotics they are last resort medications.

Luckily I don't think I had any serious side-effects from the antibiotics, I remember being on Ceftriaxone too now you mention the name and I think for a point all three at the same time. Not sure what the hell they put me on during my first stint in ITU after they decided not to operate, my friends were described it as "Domestos grade" but I'd already been on two or three of those for several weeks.

 

[Forrest]

You two (OldManEmu and Triff) have been through quite a bit and have kept such a strong and positive attitude. Your stories help folks understand the intricacies of how unusual and dangerous endocarditis can be. I also ended up on Ceftriaxone to treat my case, which was detected right away (an example of being my own best advocate and meeting superb urgent care doctors).

It’s interesting to note just how variable the symptoms, progression of the infection and treatment can be. Some forms, “acute” endocarditis can move very fast and cause serious damage soon after being infected. An example of acute endocarditis is when the infection derives from the bug Staphylococcus aureus, a bug that can sometimes be very resistant. Endocarditis can be very insidious, even hiding in the heart, I believe that contributes to why they use stringent antibiotic protocols and are so careful about making sure the bug is completely eradicated.

I have also heard of some cases where the person went on for a few months of subacute endocarditis before being diagnosed correctly and didn’t get noticed until bits of vegetations started to dislodge and create a stroke. A friend of mine had this experience in the 1980’s while in the military, as the docs didn’t diagnose him correctly while overseas and a few months later he passed out and went numb in his extremities, that’s when they found out what was wrong. He eventually got treated and had to have his aortic valve replaced and material used to fix his ravaged heart wall. That’s when he first learned he had a congenital heart valve problem. He is doing very well today, but understands how lucky he was to survive.

I’m no expert, but I’ve read that if left untreated endocarditis is always fatal. Heart valve patients have a higher rate of endocarditis than the regular population, however fortunately it’s still of a relatively low occurrence, but a serious matter for us to be aware of. Prosthetic Valve Endocarditis (PVE) can be even more dangerous, but I believe they are getting better at treating this complication. I’ve been told (and understand that the American Heart Association alludes) that since I got it once I stand a slightly increased risk of endocarditis, but I like what my infectious disease doc told me in my follow-up visit after completing treatment, “it’s not a forgone conclusion that you’ll ever get this again”. I take practical precautions and understand the symptoms well, but other than that I am not consumed in worry. There’s a lot of life to enjoy, I like how survivors are going on adventures and appreciating the finer (simpler) things even more.

 

[triff]

You two (OldManEmu and Triff) have been through quite a bit and have kept such a strong and positive attitude.

That absolutely works both ways, I'm finding this forum and the knowledge/experiences of others invaluable in properly understanding what I've been through and it's a therapeutic process for me to describe my own experiences. As horrible an infection as endocarditis is, it's good to know I'm not alone and that others have gone through similar experiences and come out the other side. It's also been good to read that, as far as such a situation can be normal, any side-effects I've had from the endocarditis, embolisms, Warfarin and surgery are all pretty standard.

I have also heard of some cases where the person went on for a few months of subacute endocarditis before being diagnosed correctly and didn’t get noticed until bits of vegetations started to dislodge and create a stroke.

I'm not sure either how I contracted it or how long I'd had it for, but the onset was pretty much immediate - one Saturday night I was at a party, the next morning I woke up feeling pretty much dead (pretty close to the truth in hindsight) and thinking "This is one HELL of a hangover...". A cardiologist told me it was possible it had lain dormant for a while, and I had been pretty under the weather (without really noticing it) for a while, maybe a couple of months. He described it as building up on the valve and then one day just exploding out into the bloodstream, which would have been on that Sunday morning. I was so bad I didn't even make it home until the Monday night, I have no idea how I managed to stumble to the Tube stop and make my way home... :? It sounds like quite a similar situation to your friend in the military Forrest, the root cause of mine was also a previously unidentified congenital problem with my mitral valve.

There’s a lot of life to enjoy, I like how survivors are going on adventures and appreciating the finer things even more.

I'm not sure if it was this thread or another one where I said it, but I'm not sure I'd go back and change things if I could undo the past 8 months and have a perfect mitral valve, I value the experience and what it's taught me. It's a good thing to know I can deal with something as serious as this and not just roll over and take it, it's also taught or reminded me a lot about my relationships with those around me and what I want to do with my life. A lot of people have said "I don't know if I could do that..." but I think probably most people would find the strength if they had to. The day I came out of hospital I felt pretty much superhuman, I remember walking around my home town first finding it a bit odd being back in civilisation after two months of bleeping heart monitors and green hospital PJs and second wanting to tell strangers what I'd been through That's subsided a bit now... Never takes me that long to bring it up in conversation these days though My dad gave me some advice on reducing my scar but I was like "Screw that, I've earned this!" Everything I do now has an attitude of "Endocarditis, I slapped you..." about it. I'm very aware of the dangers though, but at least I'd know exactly what it was this time and not have to try three times to get proper attention from the hospital then spend a month rotting whilst the doctors did very little about it.

Another thing that's maybe a bit curious for me is there was never a point when I thought "Why me?", positivity is, in my mind, an absolutely essential part of recovering from any life-changing event like the ones many of us have been through, that also applies to those around us. My mum died of cancer in 1999 but she was adamant up until the final days that she'd beat it - maybe not being entirely truthful to herself, or at least putting on a brave face against impossible odds for the sake of her family - and that taught me a lot. I'm not really a spiritual person and don't subscribe to any organised religion, but I'm pretty sure she was watching over me and helping me through the worst bits, hopefully I've made her proud and thinking that gave me strength, which I guess is exactly the same thing many people get from being religious. Facebook was a pretty useful tool for me too, it kept me in touch with my friends and family, made it so I didn't have to explain everything 30 times and kept me entertained by positing gory photos of drain bags and PICC lines being inserted There was also the 'Hospital Art Club', a collection of mostly awful art I photographed whilst walking up and down the corridors, drip stand in hand, slowly getting my strength back. All in, massively serious and life threatening situation that it was, I did my best to turn it into a joke and that helped my overall positivity no end.

Waffling a bit now. Sorry...