May I please vent for a minute?

[kerri73]

I'm super frustrated with my cardiologist. I called yesterday to talk to them about my dizzy spells, which seemed more important to me. I mentioned that they started after some palpatations and I had another bout of palpatations that night. That was now two days ago. As of yesterday I had been dizzy pretty much all day long for two days. It's persisting today.

I didn't even hear back from them until today and at that, his only answer was to let them know if I continue to have the palpatations and they'll do an event recorder. (mind you, my usual nurse is also on vacation, so this is also coming to him from someone filling in for her who doesn't know my history as well).

For the first time since I've seen these wonderful doctors - who in their defense pulled me through an insanely crazy surgery and all kinds of other weird complications last summer - I'm honestly thinking of switching doctors. I love the clinic I go to - they specialize in those born with congenital defects, and they're the only ones here who do... but I've been dizzy for going on 3 days now. Not debilitating dizzy, but annoying, I'd like to know why.

I guess I may have to go to the ER to find out.

Ok, stepping off soap box now - thanks for the ears.
Kerri

 

[Mentu]

Ahhhhhhkkkkk! Last week I had a similar experience although the topic was different. My Doctor was out of town and her nurse took the week off so I was left to speak with someone who knows nothing of my background and who suggested that I call back next week. I just needed a lab test transferred to another Doctor and the replacement people wouldn't do it until I through a fit. Why was that necessary?

See, you are not the only person using that soap box. If you like the regular people, take a deep breath, and try to work around the temporary arrangement. It is so irritating when these people forget they are part of a "service industry" and that their job is to help solve our problems not stand as impediments. There! I, too, shall now step off and leave it to someone else.

Larry

 

[Lynlw]

Did you actually talk to the doctor or were told 2nd hand? IF you didn't speak with the doctor, before I switched, I would try to get a hold of him (maybe when your nurse is back) and tell him you are not happy waiting days while you are having symptoms, and you will probably be looking for new doctors if there isn't a better way to get a hold of him. We had that problem, a staff member would just piles messages on his desk (that he was never at) so when I talked to the doctor he gave me his cell number so if we ever needed him and he didin't return a call in a couple hours,(he also does caths) to use his cell. We have Justin's adult CHD card's email,(and his PA's) maybe you could ask if you could have your doctors email, I personally feel better emailing than calling the cardiologist cell phone and we always hear back from him in a couple hours (even weekends and evenings). I know how hard it can be to find a really good adult CHD or even CHD doctor that you feel really understands your heart and all that goes along with it, especially in some parts of the country, we're lucky living in an area very close (a couple hours just about any direction) to several CHD Centers, so its easier to go some place else if we have problems with the doctor.

 

[vtbecca]

For now I'd probably go to the ER. Days of dizzy spells isn't normal and you don't want to miss something. Then I would try talking with the cardiologist. I hate when regular nurses aren't there, or worse when they leave! Unfortunately I have found that people who don't know me may think I'm overreacting to something, but those who DO know me realize that I call about very few things, so usually when I do call something is going on and Gabe needs to be seen. If you've called then you're concerned, and they didn't respond so you should get it checked in the ER. And really why NOT do an event recorder? Seems important to me!

Becca

 

[Nancy]

either go to the ER or call your doctor and TELL them your dizzy spells are continuing and that you are also having arrhythmias and you want it to be checked out asap. If you are emphatic with them, then they have to move on it, because if they didn't and something happened, it would not be good for them.

 

[Philip B]

Venting

Venting

No, absoultely no venting allowed here... just kidding.

If you're not happy with the services you're receiving from your doctor(s), why not shop around? Sure, the doctors you're seeing may have the congenital heart defect label, but there are undoubtedly lots of cardiologists who know their stuff when it comes to congenital heart defects despite not having the label.

It's important that people self-advocate when dealing with folks who work to provide medical services. I think we sometimes get in the mode where we just tolerate poor service because we're dealing with people who're supposed to have high levels of education. The medical profession should be about providing service. Medical professionals who aren't willing to provide the level of service clients need don't deserve the business their clients provide. Don't give them your business if you're unhappy.

-Philip

 

[Bina]

Whenever I am feeling "off" I make sure and take my pulse and BP with my home monitor.
Docs love it when u can give them something solid to chew on and go from there.
Otherwise, I've gone to the ER and had a quick EKG done.

 

[Angel]

I would call Dr's office back and try demanding to be seen and checked out because of the dizziness, etc. and if you're not satisfied with that, I would go on to the ER. You'll definitely get checked out there! You'll be in my prayers, hopefully it's nothing serious! Take care.

 

[kerri73]

Thanks everyone! I appreciate the responses very much! I'm still dizzy tonight - this is just so not me, so yeah it makes me a little nervous. I obviously haven't keeled over yet, so it's all good, though, right? Ha

]I talked to a friend who's a nurse and I do plan to call back tomorrow and ask for a holter (vs an event recorder) and it can just nonstop record the next 24 hours and be analyzed. I also would prefer that they do an echo, but we'll see. I'm almost due for my 6 month check-up anyway. I've been taking my bp and it's not overly high or low - but home monitors can be so finicky anyway (just took it and it's 130/79).

I obviously haven't gone to the ER - and have a pathetic excuse. I had a meeting tonight. LOL Who has time for the ER?

Anyway, I'll let you all know what I hear tomorrow.

Thanks again
Kerri

 

[tcopel]

Your doctor can only go on the information passed onto him. If, for instance, the nurse provided inadequate or poorly detailed information in a manner that conveyed that you were over-reacting or that it wasnt that big of a deal, he may have not have grasped the severity of what you were feeling. Rather that change right away (given that he has pulled you out of a "insanely crazy surgery" and complications), give him a chance to explain by visiting with him in the clinic. If the explaination isnt satisfactory or if you get a bad vibe, seek someone who is better suited for you.

 

[kerri73]

Agreed. Who knows how the info was conveyed to him and what was actually said. I don't see him being one to blow symptoms off - my normal nurse I usually email and she just forwards it onto him, so I know it's shared in the manner I actually gave it. Which is nice.

I'll definitely be in touch with him tomorrow though and we'll see where we go. I guess I'm not as comfortable talking to another nurse either. Boo. I just emailed my regular nurse telling her how much I miss her! (nurses can make or break a practice, can't they?!)

Thanks again!
Kerri

 

[Lily]

I don't know why Kerri but something about this is worrisome. I hope you follow up on this first thing tomorrow.

Much better safe than sorry.

And yeah, a lousy nurse can be a real irritation. Take care

 

[kerri73]

So here's my report for today... My dr had me send in a carelink (pacemaker report) to see if they can see anything on there. I'm waiting - no "events" were recorded so they know it's not tachycardia... she is having problems getting into the details though to see if anything else is going on. They think it's something on carelink's end.

While I'm waiting on that, because we are on day 4, and yes I am still dizzy... I made an appt with my Internal Medicine Dr to see if they can rule anything else out like vertigo or whatever. Nothing else seems to fit the bill because I have no other symptoms. Just an occasional palpatation and dizziness... but the dizziness is literally constant. Ugh.

Thanks for all your input! It's been very helpful.
Kerri

 

[Lynlw]

I hope you get answers soon I can't imagine being dizzy that long. I'm glad the cotors ran a pacer check

 

[Superbob]

As one who suffers sporadic dizziness, I know it must be terribly frustrating to have that constantly going on. Hope you will continue to pursue an answer and get one soon.

 

[kerri73]

Bob did you figure out what causes yours? My carelink report came back clear. My initial check by my GP was fine (nothing in my ears, my sinuses were congested, though - but I don't feel anything there). She ran some blood tests and took a urine sample, and I'll have results of those tomorrow. She also said that if it's worse or no better by tomorrow we'll re-visit everything as well... this is just a start to figure out what's going on. And it could just be vertigo or something to that effect, and she said that the meds she'd give me for that have worse side effects than the symptoms we're treating, soooo...

Would a holter show more than a pacemaker report would? (or anything that it wouldn't)? I'm still surprised that my cardiologists don't at least want to do an echo or anything else along those lines just to rule out other things, you know?

Kerri

 

[kschul]

If you feel like you have had good care up until now I would consider not jumping the gun on switching quite yet. I would let your physician know that you were not happy with the response that you received. A lot of times physicians forget that we don't know everything they do and they need to explain why they would need be panicked or overly concerned at any given moment. I've personally witnessed patients get upset over a response and then after a "proper" explanation feel much better. I don't know about you, but when I see my cardiologist he is usually receiving several phone calls and at least one page within a 10 minute office visit. In a rush to get through their day they can sometimes forget that we need to have things explained to us. Good luck! You know your body so make sure you feel like you are getting the care that you need. You might want to talk to your nurse when she gets back before making any big decisions.

 

[ALCapshaw2]

Dizzyness is often a result of an Inner Ear issue that can be a result of Sinus Pressure or "crystals' in the inner ear fluid resting on 'sensitive areas'. You may want to consider making an appointment with an Ear Nose and Throat specialist (otolyngerist ? I'm sure I got the spelling wrong)

 

[Nancy]

I feel you need to know exactly what sort of arrhythmia you are having. Some can be quite innocent, and some are not. It is impossible to tell on your own which kind you are having. There are at least 20-30 of them, maybe even a lot more.

In someone with a known heart condition, it is important to find these things out. How else are you going to do that, if not with the help of your doctors?