Melt Down At The Cardio Office

[CarrieJessica]

I almost cried in front of the Doc today ugg!!!

I went in with notes, its been a year and the EP Cardiologist won't commit to a diagnosis (I am sure because he just doesn't know). I am on paper official with Inappropriate Sinus Tachycardia. Last appointment he said (after 2 TTT and a stress test and 2 different 48 hr holter monitors and 12 months of seeing me) "Looks like you have POTS and or OH".

Because we are an Active Duty Army family if I have a diagnosis they will only move us to a place where a specialist who can treat me, so I kind of need to narrow this down. I asked today, "so I officially have IST, POTS and or OH right?" He says "You have IST and might have POTS and or OH but the treatment is the same so it doesn't matter" WHAT?!!? I said "Doesn't matter to who because I would like to know. I realize things could be much worse but my quality of life is going down hill and thats not right".

In short, he bolted out of there and I cried on the drive home.

I am taking my meds, learning to cope and am waiting on a referral to see Dr Thompson in Florida,

[bellgirl]

So sorry CarrieJessica...we all have these experiences I'm glad you have a plan to go see another doctor. Keep taking your meds, drink plenty of fluids, find the right doctor for you, and I'll say a prayer for you...hang in there...don't give up!!

[Katybug]

I am sorry you are going through this. I can definitely relate. I had to explain to my immuno a couple of weeks ago that if he and I were the only people that would ever be involved in my care ever again, I wouldn't care about having an un-named inflammatory connective tissue disease. I had to remind him that many of his collegues are not as kind or as willing to think outside of the box as he is. Plus the insurance issues, financial issues, SS Disability issues, your military issues that vague diagnoses cause can all be so overwhelming. Hang in there.

[Lemons2lemonade]

I hate cardiologists. They are the biggest jerks in the world! And unfortunately, a lot of times that's where we pots patients end up. However, you have to remember, that a lot of the time, these guys are the one's who are doing heart surgery, so they see people who don't make it all the time--people who really are going to die. First of all i think this makes them cold. Secondly, you have to consider that they have a pretty good idea of whether or not you are going to die of a heart problem. To them, if you're not, then they can't really help you. I broke down in front of one of them before, and he wrote in my chart that i needed serious therapy...lol! I was just mad that he wasn't helping me.

[CarrieJessica]

Thanks, you guys help more than I can say. I understand his mentality, if I even start to mention something not heart related he says "you should take that up with your PCP, now how about that Toprol XL". I swear he gets a direct cut from them! I get his frustration with me 1. I am not some big deal case 2. I keep talking about being dizzy and tired. I think he forgets the system the patient is in, HE is where they sent ME to deal with this.

[AmberK]

CarrieJessica, I totally feel for you. Unfortunately, although these doctors have years of knowledge about certain conditions, they don't seem to get any empathy training!. Him even saying that "It doesn't matter" speaks volumes at his lack of awareness of the emotional impact of a long term, debilitating condition. I'm waiting on a yes/no reply as to whether I have POTS at the moment, and when I first saw my consultant before I had the TTT, his words were "It does sound like POTS but I don't know why you want to know". They have no idea how much difference a diagnosis can make, let alone your need for living closer to someone that knows what they're talking about. To have a diagnosis means you can start to understand what is going on inside your body. With symptoms like these that are so terrifying at times, that in itself could make a heap of difference. I do hope that he gives you more definite answers very soon. Hang in there.

[Libby]

Ugh. I'm so sorry! That's so irritating. Cardiologists in general are not my favorite people. Like lemons said, it's probably because they see people who are days away from dying all the time. But I stop caring about their reasons when their jerky attitudes show up to my appointments.

The one and only time I went to an EP, he told me that he totally understood what POTS was like because he would study too hard in med school, sit for too long, then feel dizzy when he stood up. HAH. Yes, that's EXACTLY what POTS is like.

I hope you can wring a diagnosis out of your doc! And maybe a little understanding, but that might be too much to ask for.

[HopeSprings]

!!! Ha, it's not just cardiologists! I received a similar comment from a neurologist when I was trying to sort out whether I had sensory or autonomic neuropathy or both. He said to me, well what difference does it make and I don't think obsessing about it is going to help. WHAT? Oh I'm sorry, I'm just really curious as to whether or not the nerves that control all my vital bodily functions are dying! I really don't get why they're like this. Hope your next Dr. is much better.

[diamondcut]

In the last 5 years of searching for an answers as to why i am loosing my life more and more day by day, i sat infront of all sorts of Dr's who quite honstly didnt have a clue. Thank god this year i got infront of the right people and atlast had the RIGHT diagnosis.

My rule i have now with new Drs is if I dont like their manner with me, regardless of what qualifications or knowledge they may have on an illness, if they are rude or insensitive I will not see them again. I firmly believe if you dont have a good relationship and trust and respect with your Dr its far harder to get better. In my opinion anyway.

[Elfie]

It is hard--- I actually think it is hard to have a POTS diagnosis as well, especially if you haven't had advanced autonomic testing to try and determine what is causing the POTS.

In my case I was 18 when I came down with POTS. However, I don't have the juvenile onset version that can be related to rapid hormone changes and growth. I was originally told "best guess" that mine was post-viral, although the circumstances around it are suspect.

Either way, because of that docs I see are always making assumptions about the seriousness of my illness and about the measures and treatments worth trying because they ARE SO SURE THAT I WILL "OUTGROW" IT IN 3-5 YEARS.

I put up with a lot of sub-par care.

Unfortunately, this fall will be my 5 year anniversary of my POTS onset, with the exception of a few symptoms that came along with a viral illness the year before. I haven't improved in any meaningful way. I'm an adult now (out of school), and am struggling to find work and make POTS work in the real world. Since POTS I've had only one full-time job, and essentially in the best conditions possible working full-time meant that I work and I exercise and do little else.

I still get told that things aren't serious, that it is "just POTS." In 2010 I had 20 pounds of fluid in my chest pressing on my lungs because my heart wasn't pumping efficiently. Now after insisting I just had POTS for years my cardio is trying to add NCS and other things to my diagnosis to explain what I've been telling him for years . . . just because my BP and HR in the office are low normal doesn't mean that I'm not fainting or having symptoms of low BP. Now he wants to use a pacemaker.

I've cried in my cardio's office before, and probably freaked him out (well, he isn't a huge jerk, so he would have handled it but been weirded out). I actually did freak his PA out--- she suggested that all my symptoms would get better if I dealt with my obvious emotional issues with counseling. I'm pretty sure the nurses chewed her out. I think it is hard for docs sometimes because they only see test results and clinical definitions, while nurses have knowledge of what the symptoms mean to your quality of life without getting caught up in "what should be happening"--- which of course never is what is happening with someone with dysautonomia.

It can be hard because I've sat there and listened to him be very concerned with the quality of life of some of his elderly heart patients and listening to their complaints and then turn around and tell me that my similar complaints aren't worth treating because 1) POTS isn't fatal and 2) I'm young and going to grow out of it.

When I first became a patient of his I didn't pursue further testing with an autonomic center because of his POTS experience (and the center I was diagnosed at not taking my POTS seriously) and his insistence he could treat me. Now he has pretty much given up, and several years later I'm trying to get into a testing center to learn more about what is actually going on with me so someone can treat me.

Beyond not having treatment beyond the very basics and it affecting my ability to work and support myself, not knowing for sure (as sure as possible) the reason I have this can be hard. It is something that is going to impact my future career moves and education. I've tried to date at various points, and the older I get the harder it is to answer questions about having kids and whether I will have this for the rest of my life. Also, because of my history of heart failure, it is hard to explain that I have this "non-serious" disease that has been serious for me before.

They just don't seem to get the URGENCY!