Worst Er Visit Of My Life And Now I Can't Stop Crying.

[Ash]

Okay I have seen many rude doctors but today may have been the worst one I have seen yet, and I just need to share, well because I am literally sitting here bawling my eyes out and can't stop.

So this last week my symptoms have been pretty bad with exhaustion, faster then my "normal" heart rate and a more severe headache then normal. This morning my BP was 79/45 with HR of 70 a little higher then my "normal" but not by much, well 5 mins after standing it was 161/149 with a HR of 136 (I took it 3 different times and on 2 different machines and got around the same reading on all of them, just to be sure it was right) so most days I would carry on with life feeling crappy because that's what I do every single day. But my husband and I are trying to get pregnant and don't know if we are or aren't. So I got to work showed my boss and coworkers and called my cardiologist. He is working in a practice 3 hours away and because we may be pregnant the nurse wanted me to go to the ER. I did take double what I was prescribed of the beta blocker I had been given to try last summer (I haven't taken it for 5 months because it was dropping my BP too low) and by the time the ER checked me in my BP was down in the 120-130/ 80-90 range and my HR was not jumping more then from 60 to 115 upon standing. Well the doctor comes in and asks why the heck I am there because my BP and HR are fine. I asked him if he knew what PoTS was and he rattled off something with the lungs so I said no and went onto explain what it is and that usually when I stand my BP drops a little but not severe and my HR jumps at least 30bpm. Also explained to him that I had been diagnosed with CFS his response " I can't believe you found a doctor to diagnosis you with CFS that is a BS diagnosis that we used in the 80s...at this point I went from laying to sitting very quick (fought the lovely dizziness) and said not one doctor but three and the only reason I was in the ER today was because my cardiologist sent me up here because I was worried with those BP and possible being pregnant! So he says "so your in the ER for a pregnancy test?!" I flipped out my phone and showed him my pictures of my vitals from that morning, and he states "to the low one my wife has those readings all day long, my response "yeah so do I and usually much lower like 50-60/30-40 range reading with hr as high as 153, but I am here because showed him the next 3 high readings..his response "I thought you said that your BP dropped or stayed the same!?" (He was being very sarcastic towards me) I said "umm yeah that's why I am up here" he asked what I wanted I said " to know if I am pregnant and maybe an IV of fluids because it will help me feel better". His response " I can do the pregnancy test but not the IV" I told him to call my cardiologist. He asked why and I said so he can know what POTs is...he took the number and came back 5 mins later and said he called " said my dr said that POTS is what I have and I should "grow" out of it in my 30s (my cardiologist has never told me the grow out of it part so I am questioning that) and that I did the beta blocker and they can do a pregnancy test and then he add I might as well go back to work. By this time I am literally crying. So the doctor leaves send a nurse in and asks me to pee in a cup, I ask if they are going to use the same test I can buy OTC and not a blood or ultrasound, nurse says no just a OTC pee stick, so I told him to save it I won't waste their time and plus I don't want that doctor to give me the news on whether I am pregnant or not. They said okay and gave me papers, I did tell the nurse I was sorry for wasting his time, and he told me that i didn't and if he had those vitals he would have been in the ER too (I think he knew I was upset) I did take a pregnancy test waiting the 3 mins now at home, and have a call into the cardiologist on what I need to do..continue with beta blockers, or do something else? Plus to ask if the er doctor did really call or not. But still I can't believe that i had been treated that way in the ER (oh i am also having slight chest pains and it is radiating down my L arm) and what made it worse is my husband who kinda already has a problem with thinking I am a slight hypochondriac at times already was listening and agreeing with the **** doctor. I feel so defeated. And what's really kinda crappy is I know just a bag or 2 of saline would help me tremendously. So how do you guys get saline when you go to the ER? Or even when do you go to the ER? I know most days I question going , i have had high readings and even much higher readings like this in the past, but with the possibability of being pregnant I kinda freaked out a little, but I know I am not gonna die although it feels like I usually don't go to the ER or even call my Dr and now I am questioning on even if I did the right thing in going and I can't go back to work because they had already rescheduled my day when I left and that makes me feel horrible in its self. Sorry to rant, I am just so lost and upset.....

*OTC pregnancy test came back negative : / I did have spotting on the 19 and 20 of Jan(no cramps, which is very very unusual for me) and if that wasn't my period then I am 3 days late however, if it was my period then my next period isn't due till Feb 9. Sorry if that is TMI

[brethor9]

Oh Ash....my heart goes out to you!! Big Big Hug! I have been where you are and can definately sympathize with everything you are going through; symptom wise and doctor wise ;(........ I think mostly everyone on this forum has had horrible run ins with docs in the ER. Unfortunately most docs you run into are going to have no idea what POTS/Dysautonomia is much less know how to treat it! One doctor in ER actually told me they deal in trauma and easily treatable issues not chronic illness maintenance and that was my GP's responsibility ;(.......... After awhile I just refused to go to ER any more....it just stressed my system even worse and they wouldn't end up doing anything for me. Do you have a POTS specialist besides your cardiologist? who diagnosed your POTS? I was able to get in-home saline infusions ordered through my specialist but I know others who have gotten them ordered through their GP or another specialist. Is your cardiologist aware of how much the sailive IV's help your symptoms? perhaps they would be willing to order them for you so you don't have to keep going back to ER. Also, if I ever have to go to ER I make sure I carry copies of my specialists consult notes with me so I can just give them to the ER doc and I don't have to explain (and they don't give me that look like I am making it up .....).......hang in there sweetie! hopefully your cardiologist will be able to help you

Bren

[ophelialit]

Ash, I'm sooooo sorry to hear you ran into one of the worst kinds of docs out there: The I-Don't-Know-Everything-And-Refuse-To-Believe-Someone-Might-Know-More Than-I-So-I-Act-Like-A-Jerk-To-Compensate MD's. I've encountered more than a few of them in my days as well--I've had ER docs tell me everything from "You need a psych eval" to "You probably have AIDS." The issues we deal with are complex and unique and frustrating and heartbreaking, and being dismissed by the very people we turn to for help can be utterly devestating. Please hang in there--there are good docs (even ER docs) out there, and I know people who carry letters from their cardiologists or GP's instructing the ER to administer saline upon admission. You might want to see if you can get such a document...hope you feel better soon.

[bebe127]

So sorry to hear of your experience Ash As if it is not bad enough we deal with all these funky symptoms and feel crappy most days and to then get treated the way you were treated. So many doctors seem to have skipped the class on bedside manner when in med school. My heart goes out to you. Hope you get to feeling better soon. {{Hugs}}

Bebe

[badhbt]

It amazes me the types of people that get into the medical field. Why? It is like becoming counselor but you hate to listen to people. Sorry you had to go through that. Don't let him ruin the rest of your day! HUGS

[FarmerAmy]

So sorry you had to go through this! Do you like your cardiologist? Maybe you can tell him what happened and come up with a different backup plan so you don't have to go to the ER again.

Also, would your cardiologist write you a prescription to get IV fluids? My doctor wrote me a prescription for IV fluids. Then I had a home health care nurse come administer them. Walgreens Infusion Services is one place that can deal with IV fluids. It might be nice to have a plan like this in place rather than having to go to the ER and deal with some crappy doctor there.

Amy

[tinkerbella]

((((((((((BIG HUGS)))))))))

I'm so sorry to hear what u went through. I think we could all write a book on all the doctors who knew nothing about POTS. Don't let this doc destroy you. I remember one doc in an ER calling me a hyperventeator. He claimed he was highly trained to to see who was one. He said I did not need to go to Another Hospital for tests when I could get them here. My cardio had made plans for me to go to Another Major Hospital for stress tests. This doc admitted me, like he was doing me a favor. Turns out he he was an doc with an overblown ego. He may have even been a Intern Doc working the ER.

Next morning when another doc walked in, I told him how I had been treated. I told him I wanted to go where my doc wanted me to have the tests. He took care of everything and was so nice to me. I was glad I told on him. I would have never had the tests I needed that showed I had POTS.

Write to the hospital, as they want to know how you were treated. The doc will be talked to. Maybe you will open his eyes to what POTS is. Try to turn this around into a teaching moment, as this will most likely be the first of many.

Hang in there -

: )

[YolaInBlue]

I'm sorry to hear about your horrible ER experience. I had a few of those myself. I've been refused IV fluids in the same hospital I was diagnosed in. Last time, in December, I went after a horrible episode, ER doctor insisted I was just fine, because my heart rate already dropped to 100. He didn't want to hear that I have many symptoms, not only heart rate and it's hard for me to bounce back without the help of IV saline. Finally after I begged him to call my cardiologist, he did and agreed to one liter.

I've had even worse experience in my local hospital which I avoid now.

Like Amy, I asked my dysautonomia doctor for a prescription for IV saline. I made arrangements with a local urgent care clinic. I can go there whenever I need an IV fix. No more additional stress. I can also show my prescription in ER if needed. Maybe you can do the same. Please talk to your doctor. Some doctors don't listen to patients but they usually listen to other doctors.

[Ash]

Thank you so much everyone! I am so sorry that all of you have also experienced this, it shouldn't happen! Doctors are supposed to care! I am still feeling mirsable but at least am not so emotional at the moment thanks to all of you! I don't have a POTs specialist doctor my cardiologist (whom I love) was the one to diagnosis me and has suggested to send me to an electro cardiologist (sp?)but felt like we were maybe not at that point yet. He did send me to an internist (who I have a like semi dislike relationship with) my cardio dr wanted the internist to rule out anything other then POTS that could be causing a problem, he never ran any tests just looked at past tests that have ever been run on me the last 3 years and diagnosised me with CFS and IBS (I had been diagnosised twice already with both those thing previously by separate doctors) the internist doesn't really know or believe in POTS per say but has always offered treatment constitent with POT recommendations so I have kept him as we live in a very small town and doctors are pretty slim. The cardiologist did call me twice this afternoon the second time I talked with the nurse she asked what my BP and HR were and they where 53/27 with a HR or 127. She seemed a little worried told me to eat everything salty I had in my pantry, drink tons of water (I am pretty sure I should be floating right now with how much I have already drank) and to get to the pharmacy or have husband go to pick up a prescription to help raise those numbers (which didn't happen because well we live 20 miles from town and I am not driving and felt bad making my husband go..soooo it is salt, Gatorade and water ) she did want me to go back to the ER if my vitals didn't raise within a couple hours (but I think I might have to be unconscious before I every go back there again). I am going to go tomorrow to see my cardio doctor he is in the clinic an hour away from the town I live in and offered to drive over to see me at my usual clinic in the morning. So I am going to take all of your advice and ask about IV saline therapy, and maybe getting a note for emergency visits, I am also going to ask if I can go to a specialist (if he knows of one) and let him know I a willing to drive as far as I need to. Are there any more questions that you all think I should ask? I am thinking we should compose a book of all our most horrific and maybe funniest Hospital/doctor visits, I am sure it would make for a very interesting and maybe slightly comical read. Thanks for all your input.

[yogini]

ugh! I would file a complaint with the hospital regarding the dr's behavior.

[roxie]

((((Ash)))) that's is so disheartening. I don't have any advice except to hang in there and do the best you can. We all have had our fair share of drs who were idiots and I think we will continue to run into them. Sadly we have to be bigger than th and keep searching for solutions ourselves.

Have you tried compression when you are that low?

[HopeSprings]

I'm sorry this Dr. made was so rude and dismissive. Not worth one of your tears, although I understand and have cried too after similar encounters. I can't believe the statement he made about CFS. I thought more progress than this had been made! I agree with filing a complaint and with it I'd attach a copy of the CDC website's description of CFS which says "Chronic fatigue syndrome, or CFS, is a devastating and complex disorder," as well as a copy of a statement made by an FDA spokesperson who said the FDA considers ME/CFS to be "in the category of serious or life threatening diseases." And I guess he was thinking of Pott's Disease which I understand is a complication of tuberculosis, so you could also throw in an article on our POTS. I'd send it to the hospital administrator. I agree with Bella Mia - we should use these opportunties to educate, plus it allows us to take back some of our power I think.

http://www.cdc.gov/cfs/general/index.html

http://www.fda.gov/downloads/Drugs/NewsEvents/UCM320310.pdf Comments on pages 13 and 14

[southbel]

Most hospitals live and die by Press-Ganey now (patient satisfaction). Suggest a letter to the hospital describing your visit and care (or lack thereof). Did the ER doctor indeed lie about speaking with your cardio?? If he did, that would be something I would add as well. Believe me, hospitals take complaints seriously.

[Birdlady]

I'm am SOO sorry this happened to you. Sadly many of us can relate and we have our own horror stories.

Many years ago before I had any idea what was wrong with me, I went in the ER during the summer. I was having severe heat intolerance symptoms and had heat exhaustion but I didn't know that's what was wrong. They made me wait 8 hours... When I got into the room, they told me I was a druggy looking to get drugs. They did not want to talk to me at all. The doctor came in and said that he has seen this so much recently. People coming to the ER for a fix...I did not once ask them for pain meds or anything at all. I just wanted them to do some blood work to see why I was feeling so sick (I had POTS at that time, but did not realize). I guess I must have looked pretty terrible for them to think I was a druggy. My husband was with me and was well dressed. I had told my husband in the past how poorly doctors treated me, but he never saw it first hand. That visit was eye opening to him.

The doctor proceeded to check my arms for track marks and was shocked to not see them. He told me I must be injecting in between my toes to hide them....They did no blood work, other than a pregnancy test (wow) and then sent me on my way. I started crying my eyes out because I felt hopeless. I refuse to even go to that hospital now. Thankfully at this other hospital I have been treated much much better, but I'm smarter about why I go. I only go when it's not POTS related.

[SpinnyC]

So sorry you experienced this. But sounds like you stood up for yourself- so good for you! Although it's just terrible to have do that when you are feeling bad enough to be in the ER. Unfortunately there are some very bad-tempered doctors out there. But there are some really excellent one's too! I know it's hard not to dwell on the bad experiences but I think docs like those deserve the same immediate dismissal from your mind that they gave to your symptoms.

Please remember that you know your body better than anyone else- so if you are unsure or concerned about a symptom don't let this experience deter you from seeking care. You might have had a totally different experience with a different doctor.

The last time I was in the ER- I was sent by my doctor for a non Pots issue (but of course my Pots was going crazy because my body was under so much stress with this other medical problem). I lucked out with an amazing doctor. He immediately gave me fluids, had me hooked up to monitor my vitals, and was very careful to make sure everything he did wasn't making me any worse. He took some time to do some research on Pots and ask questions about how it manifests for me. Then shift change happened... The next doctor (despite being briefed by the good doc) had no idea what Pots was and didn't care. He was confused by why I was there, and clearly only half grasped what was going on because he thought I'd already had a test done that I hadn't and ordered a medication I have a known allergy to. Despite having crazy vitals show up on their monitors- he saw no reason why Pots should be an interference or consideration. So he took the bulldozer approach to my problem and ultimately dismissed me with some pain meds, a "I don't know, all tests are normal" non-diagnosis, feeling worse off than I was when I walked into the hospital. Turns out, during all his careful and considerate treatment of me he missed or misread the abnormal test results that clearly showed a problem. It was later caught by my GP who thankfully, actually took the time to read the test results not just the this doc's summation.

Sadly it just seems like a roll of the dice whether or not you'll get a good ER experience.

[Guest Alex]

Ash,

my heart goes out to you. No one should have to deal with such drs. It's not like we go to the ER because we have nothing better to do, and it's unfortunate that drs don't realize how much harm they do by adopting such an attitude.

I'd contact the hospital and file a formal complaint.

I've had my share of horrible ER experiences where I've waited for 6-8-10 hrs to see a dr. I'm sure everyone here agrees that having to refrain from drinking any water/fluids for so long (ER policy!) for a POTS patient with a resting HR of over 100 leads to nothing good...but it's water under the bridge now (no pun intended).

Lots of good comments and advice in the previous posts, so I won't restate the obvious, but I will say this - it makes me mad, and sad that certain individuals forget they took an oath when they graduated from med school and for whatever reason consider that they can treat their patients however they want.

Hope you're feeling better.

Hugs,

Alex

[Ash]

Thank you so much everyone for all your advice and input. It is sad that so many of us have gone through such a horrible doctor experience. So an update of my appt on Friday with my cardiologist....it was ummm interesting to say the least. It was the first appt my husband has been to with me (not sure that was the greatest of ideas on my part) I did take a BB 2 hours prior to my appt (big mistake because my HR and BP looked pretty "normal") so I showed my doctor the vitals I had been recording on my wrist cuff which he has always taken into consideration, well for some reason Friday his response was "that can't be correct" "your vital should not jump and change that much in a day" ummmm well they do thus why I am here! (Plus on the days i work i use the cuff at work and it has always been in the same range as my home one, he response they must both be faulty?!) But of course my laying down(for 1 min before they took it) to sitting and standing don't look too bad when I am in the office with BB..so he wanted me to get a arm cuff and take it on that for a week then come back to see him with both monitors to compare it to his (well 100 dollars later..the arm cuff and my wrist cuff are either dead on or within points..so I guess my readings have been pretty accurate?)...well then my lovely husband decides to tell the doctor about his sleep problems and upcoming tonsil and nose surgery and asks the doctor if his problem is the reason I can't sleep, and that is causing all of these other things going on...so then they talk about my sleep patterns without my input and finally the doctor asks about sleeping pills (I have tried 2 different ones, yes they helped me sleep better through the night but I still felt crappy during the day so I stopped taking them) so my doctor told me to drink 2 glasses of wine..me "I don't drink, when I have tried since being sick it only makes me feel worse, but I do take a Benadryl before bed almost every night and it works pretty good, although I do wake up with surges, I will be sweaty and my heart will be racing" Doctor " are you stressed, have anxiety" me "no I mean I am type A personality but I don't feel stressed" then my husband "she stresses out over everything all the time, etc, etc, etc (this point I had to remind myself I prison orange would NOT look good on me because I could have strangled my lovely husband)... So I am pretty sure my doctor now thinks I am a stressed out hypochondriac ..thank you dear husband. And with all the chit chatting the 2 where doing I wasn't able to ask any of the questions I had about anything.. I do meet with him again this next Friday and am hoping since both BP cuffs are the same he will believe the numbers, he did say once he can see the "true" vitals then he can give me guidelines of things to do.....

[tinkerbella]

Ash,

I'm so sorry that you are having such a difficult time. I have an Omron BP arm machine that I love. My cardio only reccomends this brand. After purchase I brought it in to calibrate with his BP cuff.

I'm sure he taught you proper technique for both the wrist and the arm cuff. I rembember before meds I used to go to the store and use their BP machine. My #'s would be so high. My PC would say, you couldn't be that high or you'd be dead. Well..my #'s were that high when checked throughout the day and I'm still here. Praise The Lord, this brought me to my cardio/Pots doc.

Good Luck when you go back on Friday alone

; )

[Ash]

Thanks BellaMia! The Omron brand is the one I have too! Glad you've also heard that "it can't be that high or you wouldn't be alive" Funny what our bodies can survive. Yes Friday alone ; ) I will keep you all updated.