When did you learn to relax?

[MikeHeim]

How many of the rest of you have had issues returning to "happy-go-lucky" status? Is it possible after OHS to get sick and not be instantly afraid that you have the "Big E" (endocarditis)?

I have been feeling pretty lethargic for several days. I have also gotten night sweats 2-3 times in the past week. It also feels like there is some junk in my lungs and I began wheezing last night when I tried to go running (instantly brought me back to the time frame which led to my original diagnosis). I don't have a fever, and I haven't had any appetite problems. Anyways, I've already had 3-4 times this year where I've had a couple Endocarditis symptoms (never all of them) and gotten concerned enough to go to the doctor. Every time, I have been sent home and to come back if my sypmtoms worsen or persist. Every time, the symptoms cleared up over the next few days. I'm determined not to run back to the GP this time unless things get much worse. I'm also pretty frustrated that I've turned from a person who went to a doctor about once every five years to someone who runs to the GP about every other month. Any of the rest of you had this problem? Ugh.

 

[Marguerite53]

Mike. I think it's pretty normal to pay close attention to oneself after having been through a huge surgery/recovery like this. I think we'd all probably be on your case to SEE a doctor if you came to us and complained about these kinds of symptoms.

I'm 6 months post-op and definitely feel like I've become abit anal about cleanliness. I wash my hands whenever I can. I keep a bottle of that anti-bacterial in my car so that I can wipe off my hands after grocery shopping and such (yechhy cart handles...I know!! I raised 3 kids!! ). I just don't want to catch anything at all!! I drink gallons of orange juice! (Frankly, I always have... I just buy better orange juice now!)

I get sweats frequently, but I'm peri-menopausal and have been told to attriubute those to that!

Perhaps some of our members who actually have had endocarditis will chime in and clarify some of the symptoms they experienced.

Good luck with this last bout of stuff....hope it clears up for you.

Marguerite

 

[Christina L]

Mike -

Mike -

I see you are close to your one-year anniversary. Did you know the body has a memory? Sounds really wild, I know. However, sometimes people at the anniversary of a traumatic physical event, will have the same symptoms -I had pain like after my surgery after I had a massage at around my one-year anniversary and was told that my body was most likely "remembering."

I have never had BE and don't know about the symptoms but I know that we all probably worry a bit too much after our surgeries - as we certainly don't want to go through it again!!

Christina L

 

[Adrienne]

I must admit that having had BE in 2004, when I brush my teeth too rigorously and I see even a tiny speck of blood, I get worried that bacteria is seeping into my system and will latch onto the valve!

 

[Natanni]

Never feel bad about running to the doc for ruling out endocarditis, EVER. Nathan got blown off 3 times with active endocarditis. You need to have serum blood cultures drawn to rule out BE. His symptoms were-weeks of night sweats, fatique, very weird roaming muscle aches (blamed on lipitor) and his vision was 'dull, hazy'-he didn't know this until after 3 hours of IV Gentimycin was hanging however, and his vision cleared mysteriously. Once you have had it, you will always be predisposed to getting it again, easier. This is a very bad bug.

I will have to ask him about the Happy Go Lucky thing....I am guessing it was within 3 months post AVR, when he starting zipping around on the snowmachine. From The Wife's viewpoing, I have not learned to chill out since his surgery now 14 months ago Can you tell? Lucky him! There is not a day that goes by where I am not fretting about his heart health in one way or another...

Take care,

 

[MikeHeim]

Sorry about the confusion, but I haven't had BE in the past, I'm just worried about it in the present and future.

I've often wondered how long it will take before I have day where I don't once think about being a heart patient. Obviously, hanging out on this site every day isn't going to help that.

 

[Adrienne]

One thing that might let you worry less about BE (maybe you'll still worry about other heart things) is that my surgeon told me when I first saw him that when the valve is repaired and there is not all that regurgitation that the risk goes down significantly. He said that even to me and I have had BE, so if you have never had it plus you have had a mitral valve repair and plus you take antibiotics before procedures like going to the dentist, I really don't think you have a lot to worry about.

However, that being said, if you ever have an unexplained fever for more than two days (no flu or cold), go to the emergency room of a hospital an make sure you get blood cultures done.

 

[Der Biermeister]

Mike -- I remember worrying about it for the first month or so post surgery. I especially got spooked because I had forgotten to tell my surgeon about an allergy to commonly used suture material. I had a pretty bad infection after my knee surgery 5 years ago. Anyway - I spent a fair amount of time staring at a mirror following OHS to see if I could detect any infection that of -- in my mind -- might be raging below the surface.

Well - the doc must have used something that I wasn't allergic to, as nothing ever materialized.

I feel so strong today that I really don't think much about endo. I probably ought to, but I don't.

Hope this helps

 

[marky]

Sorry about the confusion, but I haven't had BE in the past, I'm just worried about it in the present and future.

I've often wondered how long it will take before I have day where I don't once think about being a heart patient. Obviously, hanging out on this site every day isn't going to help that.

Mike I can understand to a certain degree what you are saying.
I never had BE either, but had many complications AFTER surgery.. so every time I feel short of breath, or tired.. I am convinced that my vavle is leaking or I have fluid around my heart again!

Because my chest muscles are still sore.. seems like always.. I am constantly reminded of what I went through.. I too want to forget..and just get on with it. but sometimes I get nervous about things. I was so worried after my teeth cleaning this month.. fearing that I might get BE too.

I guess we will eventually just move on and not think about it..but then again.. taking 'some' necessary precautions aren't such a bad thing.

 

[Susan BAV]

I go in spurts, Mike. I go, happily plodding along and forgetting about my heart for awhile... and then sometimes I get to worrying about heart stuff again... I'm happier if I can just putter along and not think about it. It doesn't seem to matter whether I get on this site regularly, or just now and then; it doesn't really change any personal worries that I may have. They just come and they go.

But it doesn't help that nearly every time I go in to see my family doctor, HE freaks me out by worrying about my valve and sending me down to the local hospital for another set of blood cultures. By the time I get down to town, I've convinced myself that, "yes indeed, I'm feeling quite ill." Then the cultures turn out fine and dandy and I'm feeling foolish and hysterical, even when nobody but me knows that I was worrying. But I'm really glad that the doctor does treat me as a heart patient first and foremost. That simple fact, that our hearts don't work perfectly, does dictate some of our decisions from now on.

I remember when I had to go on blood pressure medication. That's a pretty simple thing but it took me awhile to come to grips with the fact that I was going to HAVE to take some rotten little pill every day. I was in my early 30s and it made me feel flawed.

I also remember feeling like a flawed failure for awhile after my valve replacement. I thought, "I had to have a surgery to keep alive." I felt a bit useless. But then I remembered my healthy sister-in-law who has had to have repeat C-sections for her children's births. She had to have a surgery each time to keep alive. And yet that's a pretty common surgery.

Our surgeries are not a failure on our part. It just changes our lives a bit.

You know, Mike, I think it's kind of like dealing with a prosthetic limb, dealing with our flawed hearts. It's just something we all have to deal with each day to some degree and we have to remember to take care of certain things and to be cautious of certain things and sometimes other people suddenly discover our little flaw and we have to readjust ourselves in connection to their reaction.

And, we're all survivors here, too. And surviving a brush with death, like heart surgery, will change a person, make them think more deeply on life issues. And then our worries just even out and we move on for awhile.

When I met you at the Long Beach dinner, I don't remember exactly how old you said you were, but later I was thinking you're somewhere just about the same age as my older son.

I looked up a neat quote: "Use the talents you possess. For the woods would be very silent if no birds sang except the best." --Henry Van Dyke

We may not be perfect, but then nobody is. And we have developed some special qualities from surviving our adversities which we can use in some really good ways. I think that realizing that brings some peace.

 

[sue943]

I am almost 17 months post op and would love to know when I will be able to forget and not be concerned.

My doctor is fine and doesn't seem to mind when I turn up in his office for yet another check. He would rather me be cautious than have SBE again.