Another Wonderful Er Experience To Share

[morgan617]

Well, I just couldn't take it anymore. I have been coughing my head off

from arrhythmias and have barely been able to function without getting short

of breath and feeling awful. So off we went to the ER. I did call the

cardio on call in advance.

They got me right in and did an ekg, drew some blood and did a chest x ray.

They doctor came in and said I wasn't having pvc's. I told her I didn't say

I was, I had no idea what they were, just that they were constant and really

starting to make me feel crummy. She listened for about 5 seconds to my

heart and said someone was coming in to interrogate my pacer. For those of

you that don't have one, that's when they go in and pull out all the info

stored in it, like how much you're paced, how many runs of vtach you've had,

the battery, and they can also adjust settings if needed. I do have runs of

vtach.

I paralyzed, because they wouldn't let me have my potassium, and asked for a

commode chair, because my wheel chair wouldn't fit in the ER bathroom. Then

I lay there and Dave sat there for 3 hours waiting for her to show up. We

never put on a light, never asked for anything, never bothered anyone. I

was coughing constantly and Dave was saying my heart was doing really weird

things. I was having early beats almost every other one. Which means only

about one half of my heart beats were effective in getting blood to the rest

of my body.

The doctor came in and sat down and said, you aren't having any arrhythmias

but we will send in the pacer gal when she gets here.

I frowned when she said that, but didn't say anything.

The gal came, said I had a fair amount of pvc's, but a boat load of pac's.

I said people see this as benign, but because it doesn't fit in the norm,

they assume, you can't possibly be affected by it. She said that was not

true. She said most people would not be affected by it, but some people

just are...say if you have about a million other health problems. She

raised the rate of my pacer so there would be less variation in my rates

which Dave and I had already decided was the problem. Not necessarily the

rhythm itself, but the result of it. I just don't tolerate a lot of

variation in my heart rate.

She stopped the pacer and my rate dropped to below 50. I didn't know what

she was doing, but got really hot and blam...out I go. She seemed very

nice. She went out to tell them what she had done. She said, I was having

a LOT of pac's and she adjusted my pacer, then she said something really low

and they all started laughing. The doctor comes in, tells me I'm one of the

most anxious patients she has ever seen in her ER and I need a lot more

valium, and I could go. I told her I was NOT anxious, but I was really sick

and tired of being treated like crap by people who were to first do no harm.

What she saw as anxiety was in reality anger and frustration at a hospital I

was forced to go to where the care is so bad, I have to feel half dead to

go. Would the most anxious person in Spokane have waited 5 days to go there

or seek help? So my discharge papers say palpitations, increase valium as

needed for anxiety. nuff said. sosickofitallmorgan

[goldicedance]

Oh, my dear Morgan, my fellow pacer and ablation friend.

I was running into the same sort of problems. Eventually, we had my HR paced at 84 and that seemed to cut the variations. Around the same time, I was getting junctional tachycardia, which feels a whole lot worse than sinus tachycardia. After numerous times with fiddling with the pacer, I had the AV node ablation. I can say I feel a whole lot better than I did before the AV node ablation.

Good luck! Docs, nurses, and techs have never experienced what we feel. Hence, they have no way of really knowing what it felt like to walk (well, sit) in our shoes.

Lois

[Ernie]

Hi Morgan,

The medical community never stop to amaze me with their ignorance!

I hope the new PM adjustement will make you feel better.

[juliegee]

Ernie said it best. If they could walk a mile (even a block) in your moccasins What uncaring idiots! Consider contacting the patient advocate at the hospital and sharing your experience.

(((((Morgan))))) Hugs being sent your way!

Julie

[firewatcher]

I am sorry, I've been there too. I wonder if doctors need to take a psychiatric evaluation before they can become doctors? My husband and all his coworkers had to take one before his current employer would hire him and he has less ability to screw people up than a doctor! It seems like the good doctors are getting fewer and farther between. I hope you find someone whose knowledge and ability actually warrants that kind of ego.

[mountainsunflower]

I feel for you- and I know what you mean!!!! I have had many of those exact ER visits... and every time they tell me it is anxiety. I get so mad- i do have anxiety, but of all people you'd think i would know the difference between an anxiety attack and a pots attack. I was so glad when my cardio told me my anxiety does not cause my high heart rate, instead my high heart rate causes my anxiety. Finally!!!! someone who gets it! But my last er visit was the best- i was coughing, my heart rate was up, and i was throwing an huge amount of pacs and pvcs. The doc told me nothing was wrong and wanted me to take beta blockers and go home- she was mad i came in. I keep telling her my heart rate is not normally this high at rest and that something was wrong, she did blood work and said nothing was off. When the nurse came in to release me- she said i needed to eat more bananas because my potassium was off, i looked at the blood work and not only was my potassium low, but so was my calcium. I couldn't believe it- it was later found out that i had bronchitis, which in turn caused everything else. The er doc left me undiagnosed and untreated. It is sad.... She was the worse, but not the first...

[Maxine]

What is wrong with those idiots--------------treating you like that! SUCH BULLROAR!

I echo what Julie said, contact a patient advocate. It's sad though, because you might just be too sick to use up your energy to fight such obtuse people.

What is it, some kind of conspiracy with these docs? It's almost like you can count on it------count on the doctor being rude, or even having abusive behaviour towards you. This is deplorable, especially in light that a patient is already vulnerable because they are sick. That's why they are there in the ER. Even if it is anxiety or some form of mental illness someone goes to the ER with, they still need to be taken seriously, and treated with compassion.

Do you know why I can say "it's almost like you can count on it"? Well, after belonging to several different support forums due to having more then dysautonomia, I continue to hear the same type of stories over and over again. "GOD COMPLEX".

These docs need to know, "what you do, will come back to you".

Big Hug to you Morgan.

Maxine :0)

[ladyt]

hi..

The way docs treat their patients never stops to amaze me.. They are suposed to do the best to help people stay healthy, ore have I missed the point..?..

To bee ignored and ridiculed, talked down too and treated like a hypocondriac (well hypocondriacs also deserv desent handling, they have real problems too).

i whant to gett better , i whant a better life, i want to be abel to be active, i wanth to work... I need the help of the medical comunity to get to that goal..

The docs and medical comunity have to much power of defeniton, they can say its all in your head, when it not, they can say deal whit it, its not a real problem, when it is.. empati and respect , words they migth know but not understand many of them..

First got thaken serios by a doc that sayd i whanted to take my tests again.. he didnt mean any disrespect to the docs that had tested me before, but whanted to se for him self.. That doc was great, they had done the test wrong before (the tilt tabel etc)... Docs are human, they do mistake, they dont have all the answers and they are not holly any of them..

ups.. i think i have a lot of bouilt up resentment of the medical sosiety.. And it is interfering whit my dealing whit them.. its not that I am scaerd of them, but feeling very uncomfertebal and uneasy near them, nice ore not..

best of luck to u all

[mrsdavidson8605]

Just know that you are not the only one who has been treated this way. I'm sure that doesn't make you feel better but I know exactly what you went through. Been there SEVERAL times myself. I am praying that you feel better today! It's good to have others to talk to who know JUST what we are really going through and don't judge us as "crazy"... in my opinion, the docs are the "crazy" ones! haha take care..

[Maxine]

Here's something that's really tragic; The few doctors that do believe in us, and try to help us are dubbed as crazy also.

I have heard one respected professional tell me about one of these good doctors out there being treated like this by his peers. It's those ignorant peers that need to seek help for their delusional thoughts of grander.

This is very sad indeed.

Maxine :0)

[morgan617]

Thanks for all the sweet and supportive responses! I am doing a lot better with my pacer tweaked. Lois, I swear they were junctional beats I was having, but I couldn't see them well at all. I called my doctor to see if he wanted to tweak my betas, and the cardio won't touch my meds. My primary wants to give it a week till i see my cardio and then decide what to do. I guess there is a syndrome where the pacer can actually cause the problem, but my underlying rythym is about 25. So it won't work to shut it off.

It is so pathetic. Er's have only two types of patients, it seems, drug seeking or crazy. Since I won't take their drugs, I only fit the crazy category. My family doesn't get why this bothers me so much, but it only perpetuates their thinking if I have to go in again. If all they pull up are crazy diagnoses, then that will be their mind set.

Everything they do badly just carries over to the next time. It's so sad. I do know I'm not alone, but that sure doesn't make it okay! morgan

[corina]

morgan,

although i'm late i wanted to add a few words of sympathy. i can imagine why it upsets you so much to need their help. do keep going whenever YOU know you need them.

maxine is right. i have been told (a few years ago i think) that the doctors are divided into two groups: those who think the dysautonomia is a real disease and those who believe it is all "in our heads". now we need to find those doctors who are "on our side". i am very sorry that life can be so difficult for so many people.

head up morgan, glad to hear that at least tweaking the pacer has helped you!

take care,

corina

[MelissaCrystal]

I've learned to say to doctors, "trust me, I know when I'm feeling anxious, because with anxiety added on I'd be feeling 100x worse. I feel like **** right now but it's not anxiety." Tired of doctors saying it's all anxiety and it's "crazy what anxiety can do to the body." Yeah, it is crazy what it does when I'm having a panic attack, but I know when I am and when I'm not having one. Grr!

[beggiatoa]

I used to have lots of tachycardia and PVCs and a host of other heart problems. I had great success using magnesium and taurine to correct the problem. Cough is caused by a release of histamine and Magnesium can also work to regulate that. Also, Taurine works to adjust cell membrane permeability, possibly helping you regulate sodium/potassium balance between cells.

If you have tried these before? What kinds were you using and how much? I find there are better things than valium to control anxiety.

[Sophia3]

Morgan

@$^@&^@&$ Sorry you went thru such a bad experience and cruel doctor....sigh..i have heard more bad ER stories lately...it's a HUGE problem everywhere. . .

begg

no offense but magnesium supplements and other such, don't "fix" many of our issues with tachycardia and other ans issues...magnesium at baby doses gives me major lower GI distress and THAT ALONE can cause more dehydration and electrolye issues thus worsens things and could be horrible for somebody like Morgan that has Per Paralysis !!. lather rinse repeat..

if things were so basic and simple to fix, we would not be complicated cases on disability...sorry, many here have been there, done that with diets/ supplements

don't take it personally...I see you are new.

[morgan617]

I have never heard of the one thing, but since I have to take 3 immodium a day now, I'm not sure magnesium would be a good answer for me. (Think MIlk of Magnesia)

Beggiatoa, I have been having in home care and the pharmacist has recommended magnesium and vitamin D levels be drawn. I have a condition, not related to my POTS, that affects not only my POTS, but any time my potassium shifts in any direction, it causes me to become paralyzed, go very limp and although I am not unconscious, I am completely limp and unresponsive. I take a really humongous amount of potassium every day, 160 meq, which would over dose 99% of people and kill them pretty quickly, hence sophia's response about taking magnesium.

It can only take a few diarrhea stools to put me in cardiac arrest with this condition, so it's not something that we could take lightly. I believe supplements are good for many people, but we must all be very careful about what we put in our bodies and why. Non traditional treatments have their place, just as traditional ones do, but hopefully we all take either one with the counsel of a health care provider, and with the understanding that it's something our body needs. AS a nurse, I had the horrific experience of seeing a baby taken by emergency c section, while mom was having a pacer inserted for her cardiac arrest, because she decided to take milk of magnesia to help induce labor. She ended up in ICU in severe kidney failure and comatose, with an uncertain prognosis for the baby. This is an over the counter drug and therefore considered completely safe by many, but my experiences as a nurse have taught me we must be very careful about everything we put in our bodies and make sure they are neccessary to our health.

My son Jake has been put on vitamins, and every time they do it, it really exacerbates his inflammatory bowel disease. We just went to Oregon health and sciences, where they actually drew magnesium levels and his is too high, so he develops worsened diarrhea from the magnesium in the vitamin.

It's a balancing act for all of us, to say the least.

I have pretty much gotten over the visit and realize ER doctors have 3 diagnoses and treat 3 things. Cardiac arrest, drug seekers, and psychos. They see nothing else in their heads and are waaaaay too lazy to go outside that box, at least where I live. Since I refuse their drugs, and have not been in full arrest, I am in the psycho realm of their tiny closed off world. That's the way it will remain, and I come to terms with that after a couple days of fuming. All that seems to get me is sicker. So I am working on not giving them that satisfaction. I have felt anxious, but have never had an anxiety or panic attack. The paralysis episodes take away my ability to feel anxious while they are happening.

I did finally see my cardio and informed all of them that I do NOT appreciate, in any way or form, being the butt of their jokes. They can be stupid enough to think anything they want, but as professionals, they have absolutely NO right to make sure I know they think I'm crazy and I do not appreciate being the butt of anyone's jokes. They need to think about how they'd feel if it was them, or someone they loved. They acted chagrined, at least till I was gone, but then who knows, or for that matter, cares. At this point, I've done all I can.

I do appreciate everyone's input and see my primary in a week or so. They come draw my blood every week at my home, so we will see if he follows her recommendations. The pharmacists. Of course she is recommending a bunch of drug changes and he will be VERY resistant to that, stating he is not going to be the one that kills me...LOL. One at a time, maybe, but not a bunch at once. Thanks everyone, I do appreciate everything I read here. morgan