Endocarditis or Paranoia?

[savysmommy]

Ok, this is long. I think I am overeacting, and being a little paranoid, but I thought I would check with you all as well. A few months ago some of you might remember, that I was having some odd symptoms. I had a shooting pain in my left hand, followed by a feeling of very faint. I was experiencing dizzy spells, and feeling faint off and on for a while. I went to my pcp, who did an ekg, which noted a few minor things. Did blood work, and everything looked fine. End result was I went home with anxiety medicine.
I bumped up my cardio apt, and met with him in February. Everything with the valve looked great, and he said that he felt like the symptoms I was having were becuase of increased exercise, and that I was just out of shape.

Flash forward two months.. I feel ok, generally. I have noticed that I am very, very tired, lately. I have been having almost like migrating joint pain. My wrist, then elbow, then knee will hurt. I am noticing an increase in visual disturbances "stars" and just an achy feeling in my body, including my chest area. No fever, no night sweats. Last week I noticed a line under my finger nail, and remembered reading about splinter hemorrhages, and now there is another very small one on another finger nail. Today, I noticed two on yet another nail. They are very, very small, but noticable to me. I am kind of paranoid that this could be a symptom of endocarditis. I know that my symptoms are vague, and its probably nothing but I am being a little paranoid here. Thinking about on how I felt two months ago, and now this. Have any of you had splinter hemorhages as a result of endocarditis, or any other reason? Would you go to the doc for this? I know I shouldnt care, but I almost find it embaressing to go to the doc for little minor things like this. Especialy when last time he gave me Xanax, clearly indicating he thinks its "in my head." Is it possible to have subacute endocarditis and have very vague symptoms, for a while, getting through the day just fine? Or, would I be so sick that its obveous something is majorly wrong?

Thanks for any feedback, I know this was a long one..

 

[Phyllis]

Never fear paranoia when it comes to your health- by all means give the doctor a call. That's what we pay them for right?? If you don't get satisfaction, maybe it's time to look for another doctor.

 

[WayneGM]

I have also read that splinter hemorrhages can be a symptom of endocarditis. Here's a pic as a reference point to what you have.

http://library.med.utah.edu/WebPath/CVHTML/CV105.html

However, they can also occur from trauma as I got some last year after a gust of wind slammed a door on my fingers. However, if you haven't had such a trauma lately, my advice is when in doubt, call the doctor.

 

[sue943]

I am also paranoid about sub-acute endocarditis, I have had it once which caused my problems.

When I first became ill I felt dreadful for about ten days, this included vomiting for a number of hours as the initial symptom, having rigors and having no appetite at all. I don't know if it is normal to be really unwell initially but it happened to me. Then my appetite returned and I just felt vaguely unwell, not enough to keep me off work or to seek medical advice. I also had problems keeping warm, I needed to wear a thermal vest.

Then several months later I spent another night vomiting and by morning had had a stroke from the vegetation breaking off. I then had the rigors etc again and the damage escalated.

I did notice the splinter haemorhages after the stroke, I hadn't noticed prior to that. Since the middle of February this year I have had three splinter haemorhages and it does worry me especially as a week after the first appeared I vomited for no apparent reason. I haven't had the loss of appetite nor rigors but did mention it to my GP who didn't seem over concerned. As I said to him, I just no longer know when to take notice and when to not bother.

If it is any consolation, many years ago a woman who used to work for me became ill with her heart and was rushed to hospital. the doctor who examined her looked at her nails and when she asked why he said he was looking for the splinter haemorhages. I looked at my nails and had about four of them at the time! So it is quite possible to have them and to have nothing wrong with you at all.

If in doubt try to get a blood test to measure your white cell count, mine was sky high when I had SBE.

 

[savysmommy]

So about one month ago, I started geting a sore throat. It continued and I developed cold symptoms, but otherwise felt fine. Then, I almost completely lost my voice. Cold is gone now. It was the first cold I have had in a long time, and probably one of the worst as far as the shear duration. Other then that, I havent been "sick."

I know I shouldnt worry, thats what the doctors are for. I guess I just feel silly, especialy since the last time they gave me xanax.. and said I was anxious.

 

[debster913]

When it doubt, check it out.

I saw my cardio today too for a post-angioplasty checkup, and he accused me of being anxious too. I balked at that, thinking, Oh great, Dr. V thinks I'm a hypochondriac, but thankfully he said he didn't feel that way. He just meant that he thinks I'm a bit too high-strung and need to relax more. My mom's in the hospital with who knows what, and I feel like I have a million things to do.

But, do call your doctor. Every time I hesitated about calling mine, my friends and family would say, "He gets paid to take care of you." I had (have) allergies, like Susan BAV mentioned above, and I didn't take care of that right away. Ended up with a nasty respiratory infection last week because of it.

Go. Tell us what you find out, OK?

Take care,
Debi (debster913)

 

[ruth]

Go to the Dr.

If he gives you Xanax again, ask him why, do you think this is all in my head because it feels like it's in my body.

If he dismisses your nails, ask him why? Keep asking why until you go home understanding the deal & he'll still get his fee. You deserve to know, it's you he's talking about. Bring a support person if you can & aren't comfortable asking questions or just get "white coat syndrome" and every question flies from your brain (that's me). Write questions down perhaps. Please don't let days go by fretting.

Go, call....

Wishing you the best,
Ruth

 

[savysmommy]

Thanks everyone. I think I am going to switch doctors anyway. A friend of mine mentioned that I should be seeing an internal medicine doc vs. a family physician. I think my cardio takes me seriously, but I also think he feels like a lot of what I feel is because of the emotional toll surgery took on me. I suppose that could be possible. I have seen many threads here about how we feel after surgery. I am definitely more cautious and concerned with the little things.
I am going to try to get in next week to discuss stuff.

Debi, Sorry about your mom. I sure hope that they find out what's going on, and that it isn't serious.

Shannon

 

[Jed]

Listen to your body

Listen to your body

Hiya,
I think you should take every sympton serious until your doc's make you comfortable. In 2004 i had my aortic and mitrol valves replaced and everything was going fine until April of last year. I basically felt like crap. It felt like i had a bad flu and my right elbow hurt real bad. I finally took myself to the hospital. I live alone. I went to a local hospital and they eventually flew me to Johns Hopkins where i had my OHS. Long story short i had endocarditas on my aortic valve and it also settled in my elbow as well. Also later that night i had a hemorage in my head that they had to do an emergency craniotomy (sp). I died 4 times that night. I was in really bad shape to say the least. They almost had to cut my arm off because they couldnt clear the infection there. I had surgery scheduled to do a aortic root and valve replacement. Somehow they both cleared with antibiotics. I was really lucky. My angel crew was working overtime for me. Its been a year now and i had to retire on disability from my job. I am only 43 so that was tough mentally. Moral to my story is that you shouldnt overlook any symptom. I did and i almost lost my life because of it. I think you should listen to you body more than your docs. I am not trying to scare you or anybody else, i just think its better to be safe than sorry. Easier to replace your doc than your life. Anyway i am sure its nothing but hope you make your doc make you feel comfortable. Best of luck always, Jed

 

[savysmommy]

Thanks Jed. I agree, its important to pay attention to everything. I definitly feel more aware of my body these days, but I also always question if its me feeling it, or in my head. Needless to say, I did go to the doctors and they took some blood. I havent heard back yet what the results were.

I also had some weird episode the other day that scared the s*** out of me! I suppose someone might call it a panic attack, but I have never had one, and so I couldnt say for sure. It was really hard to describe, but couldnt breath, not out of breath, but couldnt take a breath, chest and back pain, then felt like i was going to die. It only lasted 10 seconds, then was totally gone. I think I have myself freaked out, and that may have been the source.

 

[Natanni]

Hi

My husband had endocarditis in July 2005 due to strep viridans. If you have any doubt at all, go get a serum blood culture. A doctor should never make you feel at all paranoid about getting this done. Endocarditis is very scary. My hair stood straight on end when I read Hank's (the founder of VR.COM's) story, it was exactly like my husbands.

To get all of my husband's symptoms, you would have to go back into my earlier threads as some of the details are starting to blissfully fade away but what I remember is about 6 weeks of general feeling poor, roaming muscle ache (one day this leg, next day elbow, next thigh) and terrible night sweats. After they started him on IV Gentamycin, his vision started to clear up--he didn't even know that his vision had deteriorated until the IV had been running. I remember thinking how sad that was, how sick he was and he got blown off 3 times by docs prior to this. Standard blood counts (CBCs) did not reveal infection--only serum cultures will. He never had anything in his fingernails, but the docs were checking them with great interest every day.

Keep us posted!

 

[Adrienne]

I had endocarditis in May/June 2004. It was also strep virdans. With me the symptoms were a low grade fever and an unbearable headache. In the morning, I used to moan it hurt so much. I got blown off by doctors at a clinic 3 minutes from the house. Finally, my husband took me to the ER. The ER doctor had a feeling from the beginning it was endocarditis, and then the blood cultures confirmed it. I was put on both gentamycin and penicillin in the hospital. Then I had a PICC line put in and had a pump for a month in which the penicillin bag had to be changed every day. In any case, I think different people get different symptoms, so if the doctor blows you off, go to the ER. I know it's a pain, but it's worth it.

 

[Jed]

Watch Them

Watch Them

Hi again,
I agree with you wondering if your symptoms are in your mind or not but what if you are right. I hope they get you fixed up soon. I also am having breathing issues that are a mystery to everyone. It is hard to explain the feeling you get when it happens but it is scarry. I didnt have those until after i got sick with endocarditis. I also got sent home with a picc line with penicillan 3 and that seemed to do the trick for my infections. I would love to hear what they say about your breathing issues. It may help me also. My endocarditas was some kind of strep but i am not sure what kind. What you are describing really sounds like what i am going through. It comes, scares the poop out of me and when it subsides i feel fine. Kinda weird. I hate it, i have to be careful what i do and dont walk very fast and not push myself. It really does scare me when it happens even though it has happened often, i still get that panic feeling. Anyway good luck with your tests and stay positive and belive in yourself. Dont let them docs dismiss you. It only takes one mistake so you watch them like a hawk, lol.
Jed

 

[savysmommy]

I got my blood results back. They did a CBC, SED rate (ESR) and a bunch of other thyroid stuff. They didnt do a serum test, but said the sed rate would be elevated if positive. My SED rate, or ESR is normal, at 2 MM / hour. I didnt ask for any other test, cause I wasnt sure when I went in there what test they should do. She wanted to check for arthritis for the joint pain I have been having. That too was negative. So, I guess im fine.. and If I continue to have the same symptoms I will come back in. Do you think its possible to have a low sed rate with endocartitis? Should I have them do other test, or leave it as is? Im gonna try to just move forward and not think about it, maybe start obessing about something else. If I still feel the same way, while obsessing about other things, then I will return to the doc. At least this way, I can see if its just paranoia.

Thanks !

 

[sue943]

Oooer, I have another line, that makes four since the middle of February. The other three were in the third of the nail nearest the free edge so they have grown out, this new one is about an eighth of an inch from my cuticle so hopefully it will not have grown out by the next time I see the cardiologist which ought be next month.

Here, and in the UK it is standard practice, as far as I can tell, to keep us in hospital until the infection has completely gone. With my personal experience that is comforting as I didn't develop a heart murmer until I had been on intravenous antibiotics for about two weeks. I shouldn't like to have been at home alone and not being examined by a cardiologist every day. I was in hospital for five and a half weeks, the endocarditis was diagnosed halfway through the first week so the treatment was five weeks in hospital then I think I carried on taking oral antibiotics for some weeks at home.

I didn't get a PICC line, I had canulas in my arms which were changed every few days, they injected the drugs six times each day. I think if it happens again I will ask for a PICC line as my arms were black and blue and they had trouble finding veins eventually.

Perhaps we ought to have a thread devoted to 'How it was for me' when we had endocarditis, symptoms and how we felt, plus treatment.

 

[Natanni]

Sed rate? I am not sure on that one. The only thing I was told with Nathan is that the only definative way to rule out endocarditis is with serum blood culutures. Nathan passed a pre op physical with all pertinant lab work, chest Xrays, etc with full blown endo, it snuck by everyone. We come home and he just gets worse and worse-4 days later in our little local small hosptial lab and ER trip #2, somone finally did blood cultures that come out positive. Had they opened him up to do his valve replacement, we would have had devistatint results and likely would have had at least one more open heart surgery. Sed rate is an inflamation value-what is someone had been doing alot of ibuprofen? Maybe I can look back on Nathan's labs this weekend.