Very scared!!!!!

[WalkidianNY]

Hello everybody, I would've liked to find this forum before so that my introduction wouldn't of been like this, Im 33 years old. Im a mom of two young boys and happily married. we live in suburb new york.
In 1987 I had OHS to replace my mitral valve,on 5mg coumadin since then, in 2002 my aortic valve started leaking.. I have been watched very closely by my cardiologist , I know that eventually I will need to replace my aortic valve.
But my real concern is that a week ago I developed low grade fever with no source of infection, I was admitted into the hospital and had blood cultures that came negative so far. Im getting a TEE today for high suspicion of endocarditis , my symptoms are low grade fever, cough
and rapid heart rate. Im sooo scared , im crying my eyes out, feel like im going to die of this. pls help, give me some advice.

 

[Duffey]

Hi and welcome!:smile2:
Your fear is very understandable, but until you have the TEE, there's really no way to tell what, if anything, is going on with your heart. The fact that the blood cultures have been negative so far is good. If you're undergoing the TEE today, hopefully you'll have some questions answered before the day ends. Can you update then?
I'll be waiting to hear more.

 

[Jkm7]

It is understandable you are nervous but it seems you are being watched carefully and getting good care. Your doctors seem to be taking it very seriously and hopefully even if it is endocarditis, it has been caught early and antibiotics will do their job quickly. Having negative results so far is good news.

Let us know how you are doing.
Best Wishes.

 

[Julian]

I echo the above comments. Keep us posted. Very serious situation but even with all the what ifs your situation is survivable. Your attitude is that you have a purpose and a mission in life that has not been completed your not allowed to die yet. Your going to live please keep us posted.

 

[triff]

Hey there, yep as Duffey said you need to wait for the TEE, it sounds like you're in very good hands though and they'll know exactly what they're looking for. I was diagnosed with endocarditis out of the blue last summer, it was fairly drawn out and complicated and I had my mitral valve replaced three weeks later and eight months on, honestly, I'm better than ever. So that goes to show it's very much a curable condition! Being scared is obviously a very natural reaction but hopefully it will pass or at least subside - and even if you're scared, remember you're still allowed to be positive!

If it does turn out to be endocarditis, then it'll have been caught very early, since your infection markers still sound like they're still low (mine reached >450). You'll be in exactly the right place for an operation you knew was going to happen one day anyway. The new valve will be 25 years more modern, more efficient, less likely to have any complications further down the line and you should hopefully be looking forward having it for life. Think of it as an upgrade!

I wish you the best of luck with the TEE and, as the others said, please keep us updated.

 

[WalkidianNY]

Ok, preliminary report:
They found no vegetation, however dr said he found a lot of 'gunk' (that's the word he used) in my mechanical mitral valve, he thinks its because of the age of it (26 years). He explained but I don't remember much because of the anesthesia. Im going to see him on tuesday to find out more.
Have you guys ever heard of that 'gunk'? what if he is mistaking it with vegetation? Oh my Im sooo scared...

 

[dtread]

Might be what is called "pannus". Its a growth that can happen around or on a prosthetic heart valve. If your mitral valve does have pannus growth its probably advisable to remove the old valve and replace with new valve along with your aortic valve. That, plus the fact that the valve is 26 years old. Perhaps its a tilting disc valve? Ouch! The good news is that medical science has come a long way since you had your original valve implant. Many improvements and a lot safer. Still, its no cakewalk.

 

[WalkidianNY]

Yes is a tilting one!! could that be mistaken with vegetation!?!?

 

[WalkidianNY]

Hey there, yep as Duffey said you need to wait for the TEE, it sounds like you're in very good hands though and they'll know exactly what they're looking for. I was diagnosed with endocarditis out of the blue last summer, it was fairly drawn out and complicated and I had my mitral valve replaced three weeks later and eight months on, honestly, I'm better than ever. So that goes to show it's very much a curable condition! Being scared is obviously a very natural reaction but hopefully it will pass or at least subside - and even if you're scared, remember you're still allowed to be positive!

If it does turn out to be endocarditis, then it'll have been caught very early, since your infection markers still sound like they're still low (mine reached >450). You'll be in exactly the right place for an operation you knew was going to happen one day anyway. The new valve will be 25 years more modern, more efficient, less likely to have any complications further down the line and you should hopefully be looking forward having it for life. Think of it as an upgrade!

I wish you the best of luck with the TEE and, as the others said, please keep us updated.

Triff what do you mean by infection makers?

 

[triff]

Hey there. It's basically a measure of how infected someone is by looking at a protein made in the liver, as far as I know it's not in relation to any particular infection. Wikipedia might explain it better (I wouldn't bother reading the whole page!).

"C-reactive protein (CRP) is a protein found in the blood, the levels of which rise in response to inflammation... CRP is a general marker for inflammation and infection, so it can be used as a very rough proxy for heart disease risk. Since many things can cause elevated CRP, this is not a very specific prognostic indicator."

So they do a blood test and a high number or 'marker' means you're probably more infected. It sounds to me like they will most likely have done this, and if they did then it sounds like you're not showing high markers. It's not to say, if correct, that won't change, but if it does then you'll have been caught at the very early stages - even if it is endocarditis. So many 'if's!!

I hadn't heard of 'pannus' before, but that sounds at least as likely as endocarditis if not more. There's absolutely nothing to be gained from assuming the worst, and even if it does turn out to be endocarditis, if, then worry is not a positive emotion. Remember that you're in excellent professional hands, you're surrounded by a family who loves you, it could be very serious but it's early days and nobody is racing around making out-of-hours to cardio surgeons to arrange operations ASAP - it sounds to me like you need to try and focus more on all the positives that you have instead of the one possible negative. Be strong!

 

[dtread]

WalkidianNY, I doubt the tilting disc valve would be mistaken for vegetation. But, your doctor(s) should be aware that you have a tilting disc valve and will take that into consideration in diagnosing your situation and in recommending treatment for your condition. The blood flow across the mitral valve is slower than for the aortic valve and tilting disc valves were commonly used in the mitral position. However, tilting disc valves are rarely used today. Most mechanical valves implanted today (for both aortic and mitral positions) are of the bileaflet design.

 

[njean]

Very interested in how your TEE went and what the findings were?

I pray that you do not have endocarditis and things are not as bad as you think. Unfortunately pannus can happen to some of us and the valve(s) do have to be replaced.

That was the case with me. I am a double-mechanical valve patient and had to have one of the mech valves (aortic) replaced with a new one in 2006. The other valve (mitral) was not changed out because the surgeon felt it was doing okay and left it alone. Unfortnately now, it too has pannus growth in and around it but I'm considered very high risk for a 4th OHS and being treated with medications and being watched closely.

Keeping you in my thoughts and hope for better news for you.

 

[WalkidianNY]

And the wait continues....

I went to infectious deceases today where they did another bout of blood cultures, will see what this brings now.
Im so nervous..

 

[danguy]

Hello,

If you are very scared, you might inform your doctor or a nurse and they may give you anxiolytics ("antipanic") drugs.

 

[pellicle]

Hi

and rapid heart rate. Im sooo scared , im crying my eyes out, feel like im going to die of this. pls help, give me some advice.

probably by now you've heard that things are OK. I have tried to cope with many events in my life by using the lessons I learned in reflection and contemplation. Some ideas have also come from novels where I think that the author summarises the teachings well.

Try not to fear. Fear is the thing which destroys your reason and tips you over the edge.

I know it will be hard, but I do believe that the medical system now days is so well run and we know so much about things that you are bound to be treated and live to tell the tale. I have my own stories of disturbance and I'm not dead. I have read of some others here who have been through endocarditis and survived. There are some stories which will chill you out and make you realise that it can be WAY worse.

Essentially I'm saying that while what you are going through is more challenging than what many "normal" people go through, there are others to whom that would seem like "I wish my path had been that easy".

It is true that death comes for us all, and we can never know when. So if it seems that you may be facing it, then perhaps you are not.

Its a hard thing to do: to sit tight and not worry. But its a valuable skill to have, that's for sure.

best wishes

 

[WalkidianNY]

UPDATE***

Ok so here I am, still waiting... infectious decease doc repeated the tests on monday! which was 5 days ago! and still nothing... Im so desperate I can't think straight. Before the initial blood culture i had 3 doses (3 pills) of augmenting (antibiotic) b/c my PCP thought it was a UTI . Thats the reason infectious decease doc repeated blood cultures monday. But the weirdest thing is I haven't had a Fever in 2 weeks now.. Can I still have it without fever? arggghh this is soo frustrating.

Thanks Everyone for your responses!!

 

[njean]

Have you had your TEE test yet?

 

[WalkidianNY]

Have you had your TEE test yet?

Yes indeed!!! the update is up there, basically it was negative my own cardiologist did it he said he only saw pannus around my mitral valve!

 

[njean]

Poor you....I can hear your frustration at not getting the results back on your blood culture. The fact that you're not running a fever is a good thing but you can't be certain until you get your results. And it being the weekend now, you probably won't hear anything until next week.

Don't assume the worse...doesn't do you any good to worry so much. I know it's easier said than done.....but hang in there.

 

[njean]

UPDATE***

Ok so here I am, still waiting... infectious decease doc repeated the tests on monday! which was 5 days ago! and still nothing... Im so desperate I can't think straight. Before the initial blood culture i had 3 doses (3 pills) of augmenting (antibiotic) b/c my PCP thought it was a UTI . Thats the reason infectious decease doc repeated blood cultures monday. But the weirdest thing is I haven't had a Fever in 2 weeks now.. Can I still have it without fever? arggghh this is soo frustrating.

Thanks Everyone for your responses!!

Last year, I had a horrible upper respiratory infection and was Rx'd Augmentin and I had the most horrible reaction to it. I ended up in the hospital for 5 days because of it and the infection. Demon drug for me!