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Anyone Get Treated Like A Circus Act?


cardiactec
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I went into work today and I guess i was a little frustrated. i guess one of the hospital employee's that i work with (who knows about my condition) told one of the nurses about it because she had been having tachy at 118 just walking down the hall. the second i got into work today i was bombarded by three nurses asking about my condition. the employee that i work with who told the nurses all about it brought over a pulse ox and wanted me to strap it to my finger while i was still standing. i did just because they all wanted to see my HR crazy since they had been informed what my retarded heart does. they all freaked out and then i sat down with the thing still on my finger and they freaked out more when my pulse immediately dropped out about 60 points.

i dont mind people asking about what the condition is, but i felt like a circus act in front of all them. they were asking questions that i ask myself every day such as "why dont they do an ep study on you" "why dont they do anything to help you" "that isnt good for your heart, you know".

it is just frustrating hearing these questions that people i work with are asking me that i dont have any answers to, and personally ask myself the same things over and over and over again every day. these nurses know the doc that i see, and knows how smart he is, but they all also know, being cardiac nurses, that is ISNT good for the heart to be doing that. they were freaking when i told them i was on 200 mg's of beta and that they saw my rates still up at 150.........

do any of you get tired with the questions? with feeling like a circus act?

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Just a question--what do they mean by "that isn't good for your heart...". What isn't? My EP has told me repeatedly that tachycardia on standing is not threatening to my health. He said I can take a BB if the tachycardia is bothersome. So I guess I am curious at what point it is more than bothersome?!

Sorry for your experience--I think you are more exposed to inquiring minds b/c you work in the cardiac field. I guess it has drawbacks--and benefits?! :rolleyes:

Katherine

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they meant it isnt good that i am on TONS of beta blocker and my heart rates can still hit 170's. i am up a lot at work, and work about 24 hours a week, so my heart rates are constantly around 150 when i'm up. docs and other people who say that it's not life threatening are just fooling themselves. when they first found my rates to be cranked, before having gone on beta blocker, my EF (ejection fraction, pumping ability of the heart) was way down and they thought at first that i had what they called a "tachyarrythmia induced cardiomyopathy". basically what that means is because my heart rates were so high for so long (before anyone ever knew they were high, before beta therapy) it caused the heart muscle to weaken.

i am sure i am a rare case as it seems like the majority of people on this site dont have heart rates near as high as mine with little success with beta blocker's to slow the rates, but this kind of thing (myopathy) can happen and so tachycardia, for me, becomes more than just a 'bothersome' issue......since i have the documentation to prove that my heart function was flunking due to the tachy when they first caught on to this tachy issue with me.....the betas have brought my EF back up, but i am wondering how long it'll work to keep the heart's pump working as well as it should since my tachycardia persists...not as high as it is off beta, but still, high enough.

i am wondering what your HR's are if your doc is telling you to just take beta as needed, or when bothersome? just curious.

thanks for your reply.... :rolleyes:

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Cardiactec,

Yes, I know what you mean about feeling like you're being treated as if you were a circus act. I have had a few nurses get too excited about having me as their patient. They think it is all so "interesting!" And it gets harder when they start giving advice. I know they are just intrigued and that they mean well. But this is something I've been dealing with most of my life. Dysautonomia not the most exciting thing in my life and you can't just "fix it" in ten minutes. I try to put myself in their shoes and understand where they're coming from. But, yes, it is hard and I get tired of the questions.

Sorry that you're having to deal with this.

Rachel

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Well, sorry you are being treated so badly but to be honest, just be grateful you can work. :rolleyes:

Many of us dont' have a choice anymore after so many years,decades or entire lives of ANS issues...I don't care if I get questions from docs or anesthesiologist.....as long as I was working, I was happier.

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sophia3,

i am definitely grateful that i can work, was never ungrateful, but i still have to deal with a lot of what you and everyone else are dealing with....... i may work but i am pretty fatigued and worn out afterwards from having my heart rates soar the whole time....i am thankful that i can work but remember that i am symptomatic too - and work is a big trigger for me, my main trigger.

i know some of you cannot work, and i feel sorry that you cant, but even though i am partially able to still work i still deal with the consequences of this condition that all of you deal with who do not work...just on a different level.

sorry you cant work anymore sophia3...

thanks for your response rachel. i know, i wish it was as easy as they all make it sound to "fix it". i guess that comes from them not knowing much, if any thing, about autonomic dysfunction. if it were a simple arrythmia, which is what those cardiac nurses are used to seeing ALL the time, than yes, it prbably could be fixed within 10 minutes as you said. ah, if only it could be that easy! :rolleyes:

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Wow! Sounds like they were really intrigued and interested. And the one nurse with the tachy probably felt like her problems were small in comparison:-) I'm sorry that you felt like a "circus act." Especially since they pounced upon you without warning.

At least you're problem is being acknowledged in a positive, affirming way. (Rather than being told- "It's all in your head.") I'm sure that each of your colleagues, who knows about yor condition admires you for your strength in being able to work despite such severe symptoms. I think you're a hero!

Julie

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Julie,

thanks for your message. haha, i'm not sure i'm a hero :rolleyes: pretty stubborn though! haha!

it's hard cuz i'd like to try and keep my condition on the down low since i work in a hospital and dont really feel like being "the patient". i really want to keep my focus on ME not being the patient but instead being the care-giver. unfortunately when i had a bad bout of tachy a year ago (while at work) i had no choice to go into the e.r. and wham, like the whole hospital knew that the cardiac tech girl was in the E.D. with a HR of 200........i was surprised that word of it hadnt spread up to the floor i work on, so i had been trying to keep it quiet. and now today, the whole entire floor knows. argh! yeah you are right that at least it is somewhat positive feedback (them wanting to know about the condition) and not negative (them just thinking it's all in my head, etc).

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cardiactec--I do remember that your case is a little different...I'm sorry you are not getting good control with bb's.

I don't measure my hr frequently anymore. I used to measure it almost obsessively. When I do measure it, it is not usually going over 140 (this is with mild exertion, e.g., walking an incline). Sitting it is usually in the 80's. Standing it is almost always over 100, I would guess. I was concerned that now that I am getting back into exercise it is going to 160 or even higher when I exercise. My EP said this is ok. Should I start taking better note of my heart rates and ask my EP again to re-consider my situation--do you think? He just was totally unconcerned and said using a bb would be for symptom control only.

Katherine

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katherine,

i'm not sure if you should be concerned with having the EP reconsider the BB therapy with your heart rates. even though i never felt my heart racing (which is the reason why they never found my rates to be where they were at until it was found accidently) i think they were pretty high (like 200) before i ever was put on beta....and who knows how long it had been doing that for -- i am thinking my rates were probably like that for at least a few years -- otherwise i dont think it would have caused my EF to drop out.....in other words, i dont think, at least with the numbers you gave me, that it would cause your heart to weaken as it did mine, but i dont know what your heart is doing all the time either.....

i think it's always a good thing to re-evaluate your situation if it's been awhile since you've done so. if you havent taken you HR's a few times throughout the day recently, yeah, i dont think it would hurt to see where you're at and if your numbers are chronically high, than i'd check in with the EP.

i think your EP is probably correct to say that generally speaking and with the 'typical' type of pots/dysauto patient, it is okay to take the BB as needed for when you have really bad bouts of tachy/symptoms. but then again, it is important to see what your heart rates are doing throughout the day as well. if you take your HR a couple times throughout the day and you are getting the readings you gave me with every reading, than i wouldnt be too concerned..if your rate are chronically high - like over 160, i'd be checking in with the EP.

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Since my diagnosis of POTS is only a month and 1/2 old, my husband was really concerned about the heart-rates he was seeing on my self tests, so I went to see a cardiologist to assuage his fears. After a detailed discussion, the doctor told me if my heart-rates are greater than 120 all the time for two weeks or more, then I should be concerned and let him know. If they are bouncing all over the place though (such as 90 seated, 150 standing) that shouldn't cause heart damage in my case at least...

As for feeling like a circus act... all the time! I am teleworking most days from home and am supposed to be in the office once a week, which rarely happens. EVERYONE knows I'm sick since I'm missing from the office. They've followed my health saga over the past two years. When I do get into the office, my day is spent explaining "how I am feeling," "what the doctors have said," "what appointments I have coming up," "what meds I am on," ad naseum. Part of me would like to use the loudspeaker in the office so that at least I'd only have to explain it ONCE. :rolleyes:

It's absolutely exhausting - not to mention talking makes me short of breath, which makes my day of activity even less fruitful because I fade pretty quickly without not being able to breathe.

I really do feel for you, cardiatec. Having co-workers "know" really adds to the stress of the working day, and we're struggling to make it already! B)

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I'm a circus act but becuase I bring it on myself when I mention that I'm an elbow licker. Once I was being prepped for a scope and the sleep doc heard that I had EDS and wanted to know what I could do... he had me lick my elbow for him while they were trying to get in an iv.

think of the positive... you're helping to get the word out! and that takes chutzpa.

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