Need help with post endocarditis experiences

[Bryan B]

Hi all,

I'm typing this as I get ready to fly home from a client's site that I wasn't suppose to leave until Friday. I'm can't seem to perform my job anymore and I'm scared. I called my employer this morning to let them know I was sick "again", and they asked me to come home and they would send someone back out here next week.

I have a temporary crown that's giving me fits (getting dental work done in prep for surgery). I have "hit and run" sore throats that I wake up with but they subside during the day, and I'm very fatigued. I have an appt with my cardio tomorrow morning, but I'm more worried more about what will happen when I go into the office after that.

I was wondering if any others out there who have had endocarditis could share how they felt after it cleared up, and did you feel back to your old self at some point or did it take surgery before that happend.

 

[Nancy]

Hi Bryan-

I just wanted to tell you that I hope things will improve for you and that you will be in my thoughts and prayers. I'm glad you're seeing the card tomorrow. Let us know, if you can.

These kinds of things are so scary. But your card will know what to do.

Good luck!

 

[Georgia]

Me, too - we're with you. Sorry you're feeling puny again.

Sore throats - have you tried using Ocean nasal spray during the night? Are you breathing through your mouth at night? Having sore throats like that is enervating. I had them last fall - turned out to be allergies but by golly they felt like I was swallowing glass. Took a new antihistamine and nasal spray.

Good luck.

 

[tommy]

Bryan,

I went 16 years between endocarditis and AVR.

I felt a little restrained in my activities. Actually, I think part of it was medical and part of it was psychological. I didn't need a lot of excuses to be lazy (my sotry - not yours). But I led a pretty normal life for about 15-1/2 of the 16 years.

I'm hoping that your sore throat is unrelated to the heart. I've got a bug that flairs up overnight. My wife says that the drainage when lying down agravates it. But still, I seem to have less energy during the day. Your doctor should be albe to tell you for sure.

Being scared is perfectly natural. It also can be a chicken/egg thing. Fear can cause stress and loss of energy. Then you worry about the fatigue. Simply telling yourself to "snap out of it" is too simplistic, but a positive mental attitude does help.

Knowledge is helpful as well. The cardio visit should help a lot.

You are in that tough delicate stage of the process. I'm so glad that you have a place to share concerns and fears and take advantage of it.

Have a safe trip home.

 

[Bryan B]

Hi all,

Just wanted to let you know I made it home at 1:30AM (thunderstorms in Dallas caused a 3hr delay). I'll check back in tomorrow after I see my cardiologist).

 

[Valve-Viking]

Hi Bryan!

I went through endocardities last year. But in my case I went
to hospital on a sunday an had an emergency surgery following
tuesday. I can´t even recall discussing with a doctor which
valve to go for, it was too sudden and unexpected. If they
told me that I had to put a pigs head on my shoulders I am
sure I would have agreed in the state I was!(but got a mech. valve, luckily....).

So I can very much symphatize with your anxiety of getting
the endocardities back. As a matter of fact, I also just had an
episode of sore throat and feeling a bit half-sick and tired.
So this monday I went to see the doctor and at least I found
out that one is always looked upon with the highest caution
and seriousity no matter how unsignificant the warning signs
are. The doctor told me one thing which I think makes sense
and in some ways replies your question, he said maybe a few
or even 10 years from now, you might know what is a small
flue and what is to be taken more seriously, but meanwhile
the only thing is to go to the doctor and run some tests to be
on the safe side. Personally I feel more at ease now when it
was concluded I had no infection or bacteries. I guess you have
to live with the anxiety of getting endocardities back, but as
long as you go to the doctor and take some tests, you can
ease things off for a while and with time you´ll get less
worried. I think the biggest problem for me is to go the doctor
for something you would not even think about prior to the
endocardities, but nobody will blame you after the disease you´ve
been through, this is what you have to remind yourself of.

Take care.

 

[Raverlaw]

Valve-Viking,

I see from your profile that you are young (anyone younger than me is young in my book ). Did you have a congenital heart valve disease before you contracted endocarditis? If not, was the endocartitis the result of a dental procedure or something else?

Bryan,

Hang in there. It's easy to say, "Keep a good attitude" but I know that it's harder to do. But you will never feel better than your attitude - it is the limiting factor. You're doing the right thing by getting checked out - that way you can rule out a sudden physiological change.

 

[RWS]

anxiety

anxiety

Having had endocarditis three times I love my St Jude valve. The first two times did not result in further valve damage due in part to the bacteria being streptococci. Strep bacteria are more controllable if treatment starts early on. However, after round two I developed an allergy to Rocephin that resulted in temporary paralysis and a long hospital stay. Round three the bacteria was staphylococci which was quick and relentless and resulted in emergency surgery. Being allergic to the more effective antibiotics didn?t help. I did all the pre-meds and was extremely cautious but keep getting infected anyway. I certainly understand the anxiety of getting endocarditis again. My advice is to take action when ill, don?t wait or play the John Wayne tough guy. In my entire adult life I have only had a fever three different times, all three times preceded endocarditis. Talk about freaking out the next time I get a fever, gezzzzz. The good news is my surgeon said my new valve is fifty times less likely cause endocarditis , as compared to my old BAV. My mechanical valve is still in the high risk category but I like the odds.

 

[Harpoon]

Is there a connection between soar throats and endocarditis???


The temporary crown can be a pain in the arse... My wife had one last summer before we got married (she got the permanent crown and then her wisdom teeth out, a few weeks before the wedding) and she wasn't too pleased with all the fuss the temporary one caused her.

Not to mention the oral surgeon did a shoddy job closing up one of the wisdom teeth sockets and she had to go back for check-ups after we got home from the honeymoon (she had no idea anything was wrong during our honeymoon, it came up a week or so after getting home.)


It's a pain, but it's temporary.


The fatigue and difficulty in performing your job should improve after surgery. i had to go on medical leave a month before my surgery was scheduled and I took a few more months after that to recover. I was set to go back to work mid-summer but they had two college "interns" signed on to take my spot through late August so my editor just told me to relax and enjoy the summer off.


it may take some time, but you should get back to your "normal self" after surgery.


Talk to your bosses about it now though, get some other experiences from here to go on and let them know what may be in store. They should know that while you may get really sick and can't work any more, you WILL get better.


I think it's against the law to "can" someone for medical reasons anyways....

 

[Karlynn]

Bryan,
Sorry to hear that you are feeling stressed and "poorly". I had the same thought as Georgia - your sore throat could be sinus drainage related. If so, anithistimines and saline nasal spray (Ocean) can help.

Let us know what your doctor had to say.

 

[Bryan B]

Thanks to everyone for your reassuring posts. I know my anxiety and not having a date yet is not helping matters.

I saw my cardio today. My blood pressure was up a bit at 142/86 (usually around 130/75). He thinks that the probable cause of the excessive fatigue is a reaction to the beta blocker I'm on. I'm taking Toprol XL 25mg daily (which is a fairly low dose), but that combined with the stress and anxiety of not having a date yet is probably taking it's toll on me. The temporary crown and quitting smoking 10 days ago is just the icing on the cake. He gave me a prescription for Cardizem 60mg BID and wants me to try that to see if it helps with the fatigue (does anyone have experience taking Cardizem?). He also put me on an antibiotic therapy until I meet with my surgeon. My PCP never did convert me to an oral antibiotic once they took me off of the Rocephin (which I understand is a no-no), and I also have chronic prostatitis which he feels needs to be managed with antibiotics until my surgeon can determine if that may complicate matters after surgery. Besides that I'm doing just great!

Thanks to all for your supportive posts. Sometimes I believe I'm just overreacting to all of this stuff that's coming at me from every angle. It's hard not to be paranoid about vague symptoms after going through endocarditis, because it was these same vague symptoms that culminated in a full blown case of it. I'm actually looking forward to getting a surgery date set so I can look forward to feeling better.

If it wasn't for this site and my friends and family I don't know what I'd do!

 

[Valve-Viking]

Raverlaw,

No, did not have any known congenital heart disease and
still don´t know from where the endocarditis came from,
it was caused from staphylococci. So didn´t come from
any dental procedure. The doctor´s never figured out from
where it came, they were asking me most of the time, but I
never figured it out. In a way don´t like that, because how
can I avoid same situation again? And I´m not a drug-user,
I´m not the outdoor´s type that get cuts and bruises all the
time? The only thing I do is travel pretty much everywhere
in the world in my profession, but do not think this was the
reason.(have though had dengue-fever and hepatitis from
my travels in the past).

The diffiecult thing for me, was spending the other day at
home thinking I had a bad flue and then waking up 36 hours
later as a member of the Zipper Club with a strange ticking
sound in my head! But if things still were going in this direction,
maybe it was better then worrying about a surgery some time
ahead, don´t know?!?

The only thing the surgeon told me was that my damaged
aortic valve mas a bit mis-figured and that this might have
contributed to the bacteries getting a foothold there. So
now I put my hopes to that the meachanical valve still will
be better in that respect then my replaced valve. Also and
of course I won´t lay at home with high fever again......

How did you get it? I see your up for a surgery soon, how do
you feel about it? Feel free to get in touch.

 

[Kathy]

The temporary crown and quitting smoking 10 days ago is just the icing on the cake.

Bryan,

I quit smoking 5 years before I had surgery, so I don't think I had any other physical issues at the time. It was my 3rd attempt. Maybe you were just a casual user, but I was an addict and I was affected physically and mentally. Each time I quit, my sleep patterns went haywire and I was a absolute maniac for several weeks.

 

[Birky]

paranoid

paranoid

I quit smoking the day I had the surgery and it will be 1 year for me on 02/27/04. This in itself could make you paranoid along with waiting . I was ready for the loony bin. Wouldn't give me any pre-op medicine because his other patient was not doing well and didn't want to open me up until he was sure of how the othe was doing. He was almost 5 hours late. Was so glad to get put to sleep because by then I was thirsty, hungry and very crabby. My poor family survived but they were pretty shook up and nervous by the time the day was over. Woke up in ICU off the vent and that is most I remember until the next day. Kept me really comfortable. Good luck,

 

[Bryan B]

I've smoked for over 20 years (except I quit for 2 years in the middle of that time). I'm definitely an addict, and with the added stress of everything else it has been hard. But I figure if I can get over the physical cravings before surgery that will be one less thing to deal with after surgery.

This afternoon my sore throat came back, and it doesn't feel like the others. It's got that "feeling" (i.e. a precurser). I have felt more stress the last two days at work than I think I've ever felt before. Right now I'm just trying to hang in there and hope that things will start moving forward quickly once my surgeon gets back in town on Monday. I can't believe I'm saying this, but right now the prospect of having the surgery as soon as possible is almost a comforting thought. Maybe this stuff is happening to help prepare me to be at peace when the surgery time arrives.

Well I'm just rambling now. Thanks for sharing your experiences with me, it is comforting to know I'm not completely losing my mind.

 

[fisher6476]

Hey Bryan,
Gee I hope things start going better soon for you. As Tom said, I too have had that "chicken and egg " thing. I.E. did I have these pains before diagnosis and did not know it, or are these pains a sign that things are worse since my diagnosis. I had all kinds of thoughts like that as I waited for my surgery date. I quit smoking about 2 weeks prior to my surgery and i almost got NO sleep. All kinds of thoughts running thru my head, and I am sure physical as well as psychological changes going on. And it was true for me that once I got a date for my surgery a lot of my anxiety went away. (still did not sleep all that well, but somehow just felt a lot more at peace about what had to be done.) I started thinking alot
about good things, and some of the things I like to do and pictured myself in the future feeling great and enjoying those things. I also got a lot of comfort from this group in that "waiting period till my surgery. I feel a lot of empathyy for you and wish I had a magic wand, but hopefully something I have said might help a little. Think the good thoughts if you can, feel free to email or PM me if I can be of any help.
P.S. I kept thinking that I would smoke and enjoy until my surgery, and quit afterwords (after smoking for 36 years what would a few more weeks hurt ) but somebody said to me that the sooner I quit pre-op, the easier recovery would be. Somehow that hit home for me and I was able to stop.
Steve

 

[tommy]

Bryan,

Hang in there. We're all pulling for you. Glad you have a place to share/vent/ramble as much as you want/need.

 

[Bryan B]

Steve,

Thank you so much for your post, it did help alot. I can relate to everything you said. Just knowing that what I'm going through is "normal" is reassuring.

Tom,

Thanks for your "emergency consult" the other day!

It's amazing how well I am attuned to my body, even though there are some people I know who continue to doubt me. I woke up this morning with a SEVERE cold. I feel lucky that I was already on antibiotics, and so far do not have a fever or chills. While I was at the client site the woman I was working with said her kids both had strep, and the day I woke up feeling so bad (and came home) she said she was not feeling well.

I feel like I'm dodging bullets coming from every angle.

Thanks again for your support...it is really helping me to keep my chin up during this awkward stage of the process.

 

[Bryan B]

Correction:

Just took my temp again. My normal temp is 97.8 and my latest reading is 100.0. Not sure what to do. I think I'll wait a bit and see what happens. If it hits 101 I think it's time to head to the ER. I don't want to wait till Monday and then miss more time at work given my current circumstances. Any thoughts on the temp thing? Should I give it some time and see where it's at tomorrow? At what temp would you say "uh oh"?

Thanks

 

[tommy]

Bryan,

I wouldn't wait long to get help. You're already nervous about all of this - is it effecting your sleep? Also, you want to be in as good shape as possible going into surgery.

We "BE" folks know that waiting too long to seek help is a no-no. You are not crying "wolf".