I don't know what to do...

[deogloria]

I guess I should have stayed in the hospital last night. I called my cardio's office today, and the nurse (eventually) called back, and is telling me it doesn't sound heart-related, and there's nothing much they can do. They don't want to do the TEE. She wants me to make an appointment to see the doctor in the future. Without them squeezing me in, who knows when that will be.

I'm really upset. I was crying on the phone, telling her how much pain I was in last night. I told her my symptoms are getting worse, and that I have most of the symptoms of endocarditis. While it's very possible that some of these symptoms are attributable to other things, you'd think that they'd at least take me seriously, for the sake of their own liability. You'd think that if nothing else, the splinter hemorrhages would make her stop and think.

She said to go make an appointment to see a vascular doctor. Um, do you know how long it takes to get in to see a specialist for the first time, without an urgent referral? A really LONG time!

I'm just at the end of my rope, and I don't know what to do. Short of going to the ED again, and I know they're just going to find out that my cardiologist blew me off, and figure I'm being hysterical and over-reacting. (The hospital system here is all inter-connected by computer...everything is charted and visible to other hospitals and clinics in the system.)

If one more person blows me off, I'm going to have a nervous breakdown. I was in so much pain last night, and no one cares. I asked the nurse if she could at least ask my cardio to call me. I feel like if I talk to him, he'll take me seriously. But he might not get back to me all day, if the nurse tells him she thinks it's not important. I'd like to strangle her.

 

[Cooker]

Go to the ER and raise the roof when you get there..... That should get you some attention.

 

[Lynlw]

Since you just had your baby 2 weeks ago, I think I would call your OB and tell him something is wrong, you don't know if it is your heart or from the Csection but you need to be seen, since you are still under his care, he can probably get the ball rolling, find all your results from your 2 er trips and get a big picture and plan.

ps where is your pain?

 

[kfay]

I would call the Dr.'s office back and tell the nurse, very calmly, without tears if you can, that you are very concerned about what is going on with you. I would then tell her, in no uncertain terms, that you expect him to call you back, TODAY! It is not her place to make the call on whether or not he should call her back. You need to be really firm and if you feel that you can't be, possibly your husband should call there.

If you don't hear back by the end of the day, I think you'll have no choice but to go back to the ED, however, I don't think they'll do any tests again tonight, so you may just need to wait until tomorrow.

I'm sorry you are having this so soon after giving birth. It is an emotional time with all that you have going on and this just isn't helping any I'm sure.

Kim

 

[Eva]

All of the above three replies are very wise! Nothing to add except that it may not be 'endocarditis', but you may still need to know what is going on. When I told my GP's nurse I suspected endocarditis, they squeezed during his lunch time the same day...luckily, it was muscular pain in my case...but as he said, better safe than sorry when i apologized for messing up his lunch break!

 

[Lynlw]

Have you talked to your OB since this started? or your regular doctor?

 

[Lisa in Katy]

I'm no doctor, and I'm not trying to minimize this, but the symptoms you mentioned previously definitely sound more like gout than endocarditis. I too recommend calling your OB/Gyn since you are still under his care. If the blood culture comes back positive, or your WBC is elevated, you know there's an infection, not necessarily endocarditis though. The test for gout is also something that you are still waiting on. Even though you are in some pain, I think the best thing to do at this point is to wait for the results of the tests you've already had before doing others that carry their own risks and might be unnecessary.

The time after having a baby is a stressful time, as you know, and the hormones are going crazy. Perhaps your OB/Gyn can recommend something that will keep you a bit calmer during your waiting time. I assume they gave you something for pain.

 

[ALCapshaw2]

I notice that you have not mentioned calling your Primary Care Physician. If you go to your PCP and he agrees that you need to be seen by a specialist, he should be able to have the needed influence to get past the nursing station!

'AL Capshaw'

 

[deogloria]

I don't have a PCP. We moved this year, and I've only been seen by my cardio and perinatologist since then. The gout test came back normal. My white count is normal, and is actually a little lower yesterday than it was the other day (probably from antibiotics). The culture came back normal so far, but could have been affected by antibiotics.

Fortunately my cardio did call me back. I don't think he thinks it's endo either, but he's taking me seriously and checking me into the hospital in order to run some tests. I was in tears on the phone, and he probably knows me enough to know by now that for me to be crying that much, something must be wrong. Or he's covering his but, lol. Either way, I knew he wouldn't blow me off. That nurse had some nerve taking it upon herself to decide that it wasn't heart related! Hopefully we'll figure out what the problem is.

 

[Dina]

I just hate reading this,and so sorry you have to go thru it.
WHY did they cancel your TEE? Because if you were on antibiotics
the cultures are next to meaningless if negative,and it takes 48-72 hrs
for the results anyway. I'm glad your cardio called back and is listening
and willing to rule it out. Also I noticed that when I tell my doctors that
I think I have "this" or "that",they stop listening because they think I am a
hypochondiac or believe I picked up misleading internet info. Its much
better to list your symptoms and let them come up with the possible diagnosis,
and if they don't then say what you think your problem is.
I am hopeful that you don't have endocarditis,but given your history and
recent childbirth,it should be taken seriously just in case.
Hoping all is well and you will have some results soon-Dina

 

[deogloria]

Well, they did another CBC and blood culture, and took an echo. They also had two infectious disease doctors come in and examine me. They don't think it is endocarditis. They actually suspect it's somehow related to the ART line I had in my hand, near my thumb, during the c-section. They had me all set up during the surgery with the ART line and central line, etc., just in case I needed an emergency aneurysm repair. I guess I wouldn't be surprised if it's a blood clot from that ART line--it seemed messed up to me. It gave me nothing but problems, wasn't reading right, and the alarm was constantly going off on it for no reason.

Unfortunately, if it's a small clot, there's nothing they can do. I just have to suffer through it til it resolves on its own. Yay. Of course, this is coming from the infectious disease doctors. We'll see what my cardio says tomorrow.

Don't know if they still plan to do the TEE tomorrow or not. The only thing so far that has come up a little abnormal was something the doctor called a B&P. Or BNP. I don't know, something like that. My cardio said it's something that they measure that can indicate heart failure. He said it's gone up a little, and it's always been stable prior to this, so they're re-doing that test to check it.

Fortunately, my thumb is feeling a lot better right now. I think it's because they gave me some percocet. I'm thinking it might somehow be working better than the vicodin. It was getting worse again, earlier, like it's been doing every night. But I'm glad it's feeling better. As much as I hate being away from my baby, I might actually get a little more sleep tonight!

 

[Dina]

Well,if they did an echo and still don't think you have endo ,then most likely
you don't. It's also good they have a theory on the bruising of your thumb.
BNP is an indicator for CHF,I think it measures the amount of extravascular
fluid or edema in your body. I wonder if yours could be higher since you
just gave birth...so many changes occurring in your body as I'm sure you
know better than me It seems my PCP said that it's not a very specific
or reliable test. I don't know what she meant or if she is correct. I'm just
giving you a load of useful information , aren't I Well I typed it
so I'll post it with my best wishes for you-Dina