Calling all endocarditis patients. . .

[MelissaM]

During the "pre-diagnosis" stage of my endocarditis - you know, the time when you felt really crappy but didn't know why - I was having hallucinations, seeing spiders, and having these really, really awful nightmares. The kind that made my blood run cold.

A year later, I find on occaision, that random events will flash me back to that period in time and I will get a vague feeling one of those dreams is happening again and that chilling feeling coursing through my veins.

Anyone have similar symptoms during their bout with endocarditis or lingering effects from their infection?

Most of my symptoms were mental (imagine that! ) - memory loss, nightmares, blacking out, etc, so this might be contributing to the lingering effects.

Take care,

Melissa

 

[BillCobit]

Melissa -

I never had any nightmares - just feelings that I was going to die - especially during the middle of the night when I'd get fever spikes or profuse sweats. I do get nervous every time I have a fever or body aches - then I'm happily relieved when respiratory symptoms begin ("oh goody, I've only got the flu!") or when (shame on me) somebody else in my family starts getting the same symptoms.

Bill

 

[JimL]

I think I had all the things you mention, except perhaps the cold blood, after surgery, but as a result of the pain meds. Are the symptoms that come from endocarditis the same phenomena with a different source, or are they different in some way? Thus, is it possible that you're expeiencing these things as a lingering effect of the pain meds?

 

[MelissaM]

Jim,

That's an interesting theory. Maybe not pain meds so much since I used them very sparingly and have been off them for a while, but maybe as a result of the surgery itself - the trauma, anasthesia, etc. They say anasthesia stays in your system for six months, so there could be lingering effects.

Very interesting - thanks for your reply.

Melissa

 

[Nancy]

I distinctly remember having anesthesia "flash-backs" after surgery, not heart related, involving peculiar and disturbing dreams, and feelings when I awoke like I had been in a deep, dark hole, almost like I had died. It was very weird, kind of scary and lasted for several months. It eventually went away.

Maybe it is related to the anesthesia.

 

[Kathy]

Meissa,


I understand that hormones are often out of whack after surgery. I had some strange dreams in the hospital and for a while after I returned home.

I had the scariest dreams of my life during the first and last trimesters of pregnancy. I was exhausted, but scared to go to sleep...not a good situation.

 

[pillarpaul]

Melissa,

The anasthesia made me have endocarditis-like symptoms for several weeks post-op. Chills, BIZARRE dreams and profuse night sweats were common. You're fairly soon post-op still. I'd chalk it up to that more so than endocarditis flashbacks.

Paul

 

[scottvant]

Now that it's all said and done, (the endocarditis, that is), I'm pretty amazed by a couple of different overlapping things--how nonspecific the symptoms are at first, how gradually they came on, and by the "end," how severe things had gotten w/o me panicking about it. (Had those symptoms come on over 3 or 4 days I would have taken myself to the emergency room WELL before they progressed... The fact that they came on so slowly--I dunno, I guess I just got used to feeling like sh*t all the time and figured that eventually, I'd get better on my own--being in pretty good health all my life I've never had to go to the doctor to get over a "bug.") The last week before I was finally hospitalized, I was maintaining a pretty constant fever of 103.5 or so, shaking/shuddering myself to sleep every night, and waking up soaking wet and freezing. Nope, nothing wrong HERE. <eye roll>

I don't remember dreaming anything at all during this time. But that's probably because I was masking my inability to fall asleep with stashed-away "emergency reserves" of Ambien and Xanax I had been collecting. It's strange, just this one time I was lying on my bed after work being miserable and listening to my heart race--at the time I just attributed it to the fever--if you're that hot you're heart's gotta race, right? I had heard before of this disease where bacteria gets into the sac surrounding your heart and goes wild (what's that called, Pericarditis or something?) I dismissed it immediately. Nah. How in the hell would I get a heart infection? Famous last words...

Actually, if you are so inclined, I (have started to) put some thoughts about this on my "website" (in quotes because it's so amateurish... but it's what I'm working with, for now...) http://geocities.com/svantuss

What's not on the site, (because I haven't finished the story yet) is the "aftermath." I don't remember having nightmares, but I *did* think I was going crazy. As with most "mental" illness or related phenomena, it's almost impossible for me to explain why I felt that way--I just had this persistent feeling of unease that I just couldn't shake... The only really weird dreams I had were usually related somehow to my nightly ritual of running my bag of Vancomycin, flushing my PICC line, all that. I was always SO paranoid of re-infecting myself (even I was, at the time, taking enough antibiotics to suffocate a whole army of mutant bacteria on crack...) that the whole procedure stressed me out, the entire six weeks I did it.

Right after release from the hospital I stayed with some friends of mine (it was only a week before Christmas and I obviously wasn't allowed to fly home and nobody could stand the thought of me being in my apartment then all by myself so I stayed with them for the first 2 weeks or so...) When I *did* go back to my own apartment, I had a TERRIBLE time sleeping for the first week or so. Only got an hour or so a night... I was really freaked out at what felt like "bad vibes" in my bedroom--I had been in the hospital for 3 weeks, and at Laura & Kristin's for two more, but before that, I had spent the previous 3 or 4 weeks being miserably sick. It took me some time to get over an extreme case of the willies re: that. I had some other friends come over and re-arrange the furniture in the room and I bought all new bed linens and did everything I could to make it look like anything BUT the room I had left before the hospital... I know that sounds weird but I'm sure it was just some sort of subconscious coping mechanism...

In hindsight, I attribute all of this to "anesthesia dementia," or something. It really does take many weeks or a few months to get all of that out of your system...

And then, you know, the "Pump Head" syndrome sets in but that's like a whole nother topic.

In any case, if you're just a short time post-op (how long?) and if my experience is typical, it will take several more weeks before you feel like "yourself" again, and I mean that mentally and spiritually as much as physically...

Be well

Scott

 

[Georgia]

The time of year

The time of year

Now that we've started heading into the time of year when I was really sick and didn't know <acknowledge> it, I've had a few flashes on last fall. I kindof expect to have more as we head toward the holiday season.

And I do mean flashes - standing in the livingroom and suddenly feel like last year and see what I was doing and knowing now how inadequate I was physically.

At the same time, I don't really have much in the way of memories of last year. People will mention something and I really don't remember doing/saying/thinking that. I guess mostly I survived last fall and early winter.

So, Melissa, I would guess you're flashing on stuff (OK, folks my age - we know we all did this 30+ years ago - but it was a lot more fun - shame on me - never inhaled ) and I wouldn't worry about it. With all you've gone through it's probably just a little short-circuiting.

 

[MelissaM]

Thanks for all of your input. For now, the willies have passed (hopefully to never return again!)

The time prior to diagnosis is up there as one of the creepiest times of my life.

Melissa

 

[tommy]

Melissa,

Does this happen every Halloween?

Seriously, glad things are better.

 

[Enudely]

hi Melissa
I had bacterial endocarditus three years ago and didn't have any such hallucinations.... just a horrible fever and freezing cold chills and cold sweats. I'm going in for aortic valve replacement in 5 weeks or so, this news about the anesthegia is scary!!!