Cardiologist FAIL

TinyBrooke · 03-22-2011

So I had a cardiologist appointment today. It was my first time going to this particular doc, and he's a pediatric doc because I'm under 18. I was going to find out about the severity of my mitral valve regurgitation and inquire about POTS and ask him to order a tilt-table test to check for it.
I get there, the staff is friendly, his nurse is knowledgeable of EDS and funny and generally awesome. She checks vitals, does all that, then leaves. 30 minutes later Dr. Jackson comes in. He's nice and friendly, but kind of condescending (kind of anticipated that, though, him being a peds guy and all). He listens to my heart, disappears for a few minutes to look at my records or x-rays or something, then comes in to talk.
First thing out of his mouth? "Well, you do have a bit of mitral regurgitation, and that could potentially be bad, but at this point I would just call it a 'finding' rather than a 'problem'." Um, hello, my heart is puking here, definitely not a good thing.
"If you were to grow several more inches" (yeah right) "it could be bad because (blah blah blah, words I can't remember)."
This goes on a few minutes, I'm spoken to like I'm 10, when he speaks to me at all (he mostly speaks to my mom). He's about to leave and I say "Well, I've done some research and since it occurs in approximately half of the EDS community and I have most of the primary symptoms, I think I have POTS."
"And what is POTS?" (REALLY? *insert mumbled curse words of your choice here*)
I tell him and he immediately shrugs it off, "I don't think you have POTS, I think your symptoms are because you're an adolescent. Things like that are generally caused by adolescence."
I, containing my urge to disagree very loudly and rudely, listen to him tell me to increase my fluid and salt intakes and cut back on caffeine (coincidentally the primary treatment for POTS). By the time I'm cooled down enough to trust myself to speak, he's gone and I never have the chance to ask him to order a tilt-table.
Oh, and he wants to see me back in a year with a new echocardiogram and chest x-rays. Yeah right.

Johnna · 03-23-2011

Oh God. I've seen guys like this.

I'm 21 years old, and in the health system I'm in, you don't stop seeing pediatric doctors until you're 21... so I know how you feel. They'd talk to my mom instead of me, and when they'd talk to me, they'd talk to me like I was eight years old... and I was 20! No one should be talked to like they are eight years old UNLESS THEY ARE EIGHT YEARS OLD. When I was 16, I had one doctor......... Doctor Alpiner. He's a Pediatric Physiatrist. When he found out I had EDS, he started treating me like it was all in my head and then when my mom was in another room with him...he winked at her and said "Don't worry mom, she'll grow out of it." He then had the nerve to lie to me and tell me that EDS gets much better with age. Can you believe that?
I hate to say this... but many doctors are like this, even the non-pediatric ones. I've seen many, even as an "adult." It's something you might eventually learn to expect from the medical community, but try not to let it make you bitter like it made me about the medical community....... it'll only bring you trouble.

Good luck, Brooke

<3 Johnna

ReineDeLaSeine14 · 03-24-2011

Luckily for me there's an adult cardiologist who treats kids with POTS so even if I was your age I would still have someone...we had that problem with my peds rheumatologists...they never listened to me...and they had said that my flexibility was nothing, my RA wasn't severe enough to warrant treatment and all that mess.

TinyBrooke · 03-26-2011

And one of the worst parts is, my mom loves him and probably won't let me switch to another doc.

TinyBrooke · 04-17-2011

An update in the continuing saga of "The Terrible Doctor and the Zebra Who Just Wants Answers":
I had an appointment with my primary doc this past Monday to do a med check. I asked him if it would be possible to order a tilt-table through him, and he was optimistic. After he left the room his nurse apparently called my cardio's office and spoke to his assistant. She said that Dr. Jackson wanted to see me right away to get me set up with a halter monitor (a heart monitor attached to a lanyard you wear around your neck). We left that office and went across town to the cardio's office, where we were put into an exam room and told to wait for however long. After about 15 minutes the assistant came in and launched into the description of the heart monitor, the cell phone that comes along with it that barely does anything, the electrodes, etc, and then she told me that I had to wear it for a month.
Wait, wait, wait. A MONTH? I have my dance recital in a month and a half, dance pictures in two weeks, and a talent show in three weeks! I can't wear this for a month! Especially because one electrode is about two inches under my collarbone-- VERY visible.
Not excited at all, I waited for the doctor to come in so I could ask the relevance of the monitor and why I couldn't just have the tilt-table. But he never came in. We were sent on our way.
I'm past being annoyed at the inconvenience of it, but the tech and tech support are TERRIBLE. We've gotten three calls in the last week claiming that there was a "gap in the transmission".... And there wasn't. I'm supposed to stay within ten feet of the cell phone that came with it at all times, but the cell phone will say that I'm not close enough when its sitting on the table right next to me. It's glitchy and slow, and UGH I hate it!
And all this when he could have just ordered the tilt-table and been done with it. Everyone is giving me the "at least you're getting answers" speech when I complain, but they're not the ones who have to deal with it. One of my best friends, an avid swimmer, was ragging on me and saying how he could deal with it until I pointed out that he wouldn't be allowed to swim for a month. That shut him up.
Y'all are great. Thanks for letting me vent.

xxBrittany · 06-13-2011

Wow! That sounds like a lot to go through! Hope things are better now!

TinyBrooke · 06-14-2011

So after getting my monitor results back (in which everything "looked fine"), my doctor said the next step would be a "kind of scary test called a tilt-table test". To which I replied (or at least wanted to), "I know just about everything there is to know about tilt-table tests, and asked you three appointments ago to order one, to which you said you didn't think it was necessary."
My tilt-table was set for tomorrow, so I had what can only be described as a tilt-table orientation appointment yesterday. Luckily, it was a different doctor from the same practice and I like her a lot better. I found out the specs of the mission, which included an IV. Um, HELLO, needle phobia here! I was extremely glad it was a different doc because I started crying as soon as the IV was even mentioned. Had the previous doc been in the room, I would have been spoken to like I was a scared 4 year old instead of a scared 16 year old, and I might actually have punched him and told him to back off. Luckily, that wasn't the case.
ANYWAY. The doc went on to describe the test, and then mentioned something I'd never heard of. If I don't pass out from the tilt-table alone, then some medication would be put into my IV to actually GIVE me tachycardia. Um, that seems like a really bad idea, and the IV remains completely unnecessary unless I don't pass out. Okay, why not just spare me the possibility of passing out just from the IV, which, if it happens, ends the test right then and there without even getting to the orthostatic diagnostic criteria for POTS. Seems counterproductive, doesn't it?
I told the doctor that the only part of the test that I couldn't handle very well- without being scarred for life, that is- is the IV, could we just skip that part? She laughed and said no. Dangit.
So I don't really know what's going to happen tomorrow. I'm a little nervous for the IV, but it will be worse tomorrow, I know that. GRAAAAARRRRRR, EDS IS SO COMPLICATED. LITERALLY.

P.S. I would also have been okay with crying when confronted with the IV, but I had noticed a really cute guy in the waiting room. Luckily, when we left, he had either left already or wasn't done yet. Would you listen to me? I'm such a teenager.

TinyBrooke · 06-17-2011

UPDATE: My tilt-table was an interesting experience. I got there, got admitted, got my ID wristband and "Fall Risk" wristband (and then later realized that the 80 year old man sitting across from me in the waiting room hadn't gotten one. Great confidence boost right there) and then waited rather nervously. Soon a nurse came and got me, had me change into the gown, and led me into the lab. They got me hooked up to all the leads and then put in the IV. I didn't pass out when they put it in, but I did scream a little. Dr. Kliewer (the female doc I like SO MUCH better than my own cardio) showed up and we got started. I only lay there for about 15 minutes before they stood me up. After fifteen seconds, I was dizzy. Fifteen seconds after that, I passed out. They put the table back down and I came back. When they were sure I wasn't going to die, they took a few more readings and then looked at everything. Turns out that when I was stood up, my blood pressure dropped to half what it was laying down, but my heart rate barely went up. Dr. Kliewer thinks that I don't have POTS, but that I have neurocardiogenic syncope. They took the IV out, had me get dressed, and sent me on my way.
Upon further research, a possible cause of neurocardiogenic syncope is POTS. Coincidence? Not sure I believe in them. I know I have many symptoms of POTS not explained by NCS. I have nearly every diagnostic symptom of POTS... Except tachycardia. Maybe I have POHS (postural orthostatic hypotension syndrome (I just made that up)).
Thoughts?

xxBrittany · 08-15-2011

You go girl, don't let the health care system drag you down! Glad you got some results. Hmm, I have VERY similar symptoms to you, and they diagnosed me with POTS. I don't know, maybe get a second opinion or ask a geneticist that knows about POTS & EDS and they might be able to help you figure out that question!?

TinyBrooke · 08-15-2011

I almost always just say I have POTS because its essentially the same thing. Instead of my heart rate going up, my BP drops. And it drops A LOT.
This weekend was the most POTSy I'd ever felt, but my BP wasn't low enough to warrant an ER trip for fluids. The lowest it got was about 95/64, and the ER point was like 90/60 or something. So I was really close, but my mom didn't want to take me to the ER unless my doctor told her it was a good idea. I just wanted to feel better, even if it meant ignoring my needle phobia for a few hours. I still think I should have gone, I would have felt a lot better a lot quicker. I'm still low, but it's not low enough to be concerned. The best part is I have band camp the rest of the week and then I start school next Monday. Ew.