Dealing with insensitive nurses????

[purplefocus]

I was in the hospital the past 3 days and it was not a fun event. I went in on Monday night. I was sitting at the kitchen table with my family and all of a sudden started having extreme pain in my chest followed immediately by having shortness of breath. After about 30 minutes, the shortness of breath was not any better. My husband took me to the ER. The nurses were ok there, they did the normal protocol for a heart attack and called my regular doctor that treats me for POTS. He had me admitted and ran numerous test to rule out different things since this chest pain was new for me. The problem came in when I passed out in the room, (this of course is a normal thing for me). When the nurses took my blood pressure, it was 108/50, and they made the comment to me,"Wanting to get a little attention hon." It made me feel horrible that I was afraid to call them when I was having chest pain. Not all the nurse was like this but several was. The bad thing is I am a nurse also and I would never do anything like this. Finally my doctor diagnosed me with pleurisy and esophageal sphasm and let me go home. Has any of you had to deal with this and how did you handle them?

[ethansmom]

Oooohhhhhh that would have made me so mad!! I would have looked her right in the eye and said yeah HON, I do this for the attention. I like passing out, not being able to breathe, and feeling like I am going to die. It's fun, and I do it all for the attention- mmm hmm.

I'm sorry that this happened- it is becoming all too frequent with dysautonomia patients these days. I've had POTS for over two years now and I have learned to cope with these attacks myself, because it seems going to the ER acheives nothing but frustration- and I've only been there ONE time. That one time, I sat in the waiting room for three hours, then was finally given a bed in the hallway next to a guy who was drunk and vomiting, and because I was short of breath they gave me albuterol inhaler and prednisone and told me I either had asthma or was panicking. Albuterol is one of the absolute worst things you can give someone with POTS- and to think I didn't even know at that time they were just making things worse.

I usually call my POTS doctor if it gets really bad, after that experience. I think most of us dread going to the ER and save it for absolute emergencies (which, in your case was probably a good idea- since you were experiencing new symptoms). But it doesn't make things less frustrating! I hope you're feeling better- if I were you I'd call the hospital with the names of the nurses who treated you and call them out. Good luck

[Jackie]

Yes I've experienced it also. It's called ignorance, insensitivity, and stereotyping. What has helped me get over mistreatment by members of the medical profession is not dwelling on it and realizing it is their own ignorance. Yes, I've day dreamed about writing various nurses and doctors letters, but then thought what is the point and it isn't worth what little energy I have. It is something I'm sure we have all experienced at one time or another...it is something you are doing to yourself for attention...it is all in your head...or it is all anxiety or a mental problem. Just stick to your guns from here on out and realize what you have is real and if and when you encounter this atttitude again take it as an opportunity to educate them if you have the strength or patience

I agree also that ER care is the worst...they are there to basically "treat you and street you" so it isn't the best environment to find help for a chronic and misunderstood illness flareup though I realize why you went...I myself had 10 ER visits last summer I'm ashamed to say when I was ill....for me it was thinking this time the tests (EKG or whatever) will document something enlightening and a light will go off and they will know what it is and help me...well no lights, bells, whistles, or chimes went off and I always went home the way I went in except with a longer paper trail of misdiagnosis and a reputation evidently...nurses in triage I never saw before would say "oh you are the girl who has had diarrhea for months.." stuff like that.

Inpatient hospital care is no better. In the hospital, one doctor made fun of me for having a wheelchair in my room because when first admitted I was too weak to walk around. If I said I was having chest pain, the nurse would say "do you want an Ativan"? Yes, that is what I want....to be drugged into not caring my chest is hurting or my heart is racing...thanks! If my chest hurt, or I had oxygen desaturation and felt like my lungs were glued together, or I had episodes of flushing, it was not documented by the nurses in my chart (and yes I was watching my chart), but if I said "I had a hard time sleeping last night...I felt too wound up" well that made its way into the chart.

If you can't tell, I have little faith in our medical system and I hope many of these doctors and nurses with all their smuggness and self-rightousness for their luck of good health all sleep well at night....for many of them it is about the almighty dollar and not patient care anyway. If it were about patient care, they would play detective instead of prosecutor. Someday I believe though they may know somebody personally or find themselves in our situation and have a different understanding of what it is like to be on the receiving end....although to a great extent I would not wish this on anybody...I've said before...just 1 hour of understanding might be all it would take. (Somewhere on the NDRF website or another POTS site I can't remember the name of, there is an article for doctors to take a test to understand...get dehydrated, etc., and try to stand up, etc. it is quite a good idea actually! Maybe they could get all the medical personnel to have to go through it as part of their medical training!)

As for your last question about how do people handle it when it happened to them? Well all I can say for myself is that I was too sick and weak and at their mercy to do or say anything. As a nurse yourself, I'm glad to hear that you are compassionate of others!

Enough ranting though...I'm determined to enjoy this day! My best advice...don't dwell on it..you know the truth!

[denabob]

I think most of the problem with that is that we have questioned ourselves for so long due to "clear" tests that we (I now me personally) ask MYSELF if I'm overreacting or even imagining things!!

To be looked at by numerours Doctors and have them say "I cant find anything wrong" makes me doubt myself. I'm so thankful for this forum because at least I know I'm not the only crazy one hehehe

I try to ignore their attitude and just hope that they never end up on the other side of the coin! I also avoid any Doctor other than my endo. I call him when I get real bad but sometimes we cant avoid it we just have to instruct them on how to care for us- Nice them to death it works!! It's hard to be heartless to someone when they are being sweet to you !

[justme]

This is a really sore subject for me. The insensitivity of a solid majority of nurses is just unbelieveable to me. I try to justify it as them being over-worked and under staffed, but it is still hard. There are some very wonderful nurses out there, but my experience is that even they have a hard time because of not having the time to spend with their patients that they should have. My wife has been in the hospital more times than I can count. Improper nursing care (along with some doctors) almost cost her her life on a few occasions. I feel bad for those who don't have family members there to watch over them when in the hospital because that is almost what is needed to ensure proper care. OK, I'll step off my soap box now.

[MomtoGiuliana]

Purplefocus

Oh, I so understand your frustration. I went to the ER several times after my daughter was born with all my frightening and unexplained symptoms and with new ones cropping up as my condition deteriorated/POTS symtpoms got worse in my post partum period. Each ER visit was a complete waste of time and energy, as the doctors scratched their heads and sent me home with no clearer understanding of what was wrong. Most male doctors WERE kind and sympathetic and seemed to realize that something was truly wrong. The female doctors and nurses seemed more suspicious that I had post partum psychosis of some kind. I think I too developed a reputation among the ER staff--oh here comes that postpartum woman with the bizarre symptoms again. I was finally admitted to the hospital and that was when I had the worst experience with a doctor--the hospitalist assigned to my case. I will never forget this man. He lectured me for refusing to accept that I was severely depressed (he had talked to both my general practitioner and my ob-gyn and had discovered that I had been offered medications for depression and anxiety and refused them b/c I was breastfeeding and didn't believe I needed them), and that because of this I was affecting my entire family and this was unfair to them. That he has seen patients diagnosed with brain tumors less depressed than I was. He tried to make me admit that I was sleeping all the time and not eating properly b/c I was depressed. Of course, I burst into tears during his tirade, which made him even further convinced that I was a mental patient. The fact that I couldn't stand up, that my heart rate and blood pressure were erratic and that my electrolytes were off, were no indication to him that anything serious was wrong. It still makes me so angry when I even think of this doctor!

(I also remember him telling me that breastfeeding was over-rated anyway. That he had never been breastfed--and look at him!) The man was incredibly arrogant.

Anyway, the great thing was that Dr. Nsah, my POTS doctor, was called in, and diagnosed me with POTS and told me that it was quite common for doctors to confuse POTS with severe depression.

General hospitalists, general practitioners and ob-gyns must be educated about POTS. I want no one to go through what I did!

[Jackie]

Oh my MomtoGiuliana can I relate "The fact that I couldn't stand up, that my heart rate and blood pressure were erratic and that my electrolytes were off, were no indication to him that anything serious was wrong."...same thing here, especially with the electrolytes. What a horrible thing to go through at the hands of this doctor and agree he is awfully arrogant. He actually makes a good case for breastfeeding with that statement!

I had a similar experience of emotional manipulation but it was much more subtle by a female ER nurse...When I first ever took Ativan it was because this nurse in the ER told me that it is anxiety, it is nothing to be ashamed of, that I should just take the pill because if I didn't I would actually and literally have a heart attack and that she has seen it happen. Not a fair mind game to play on somebody who was literally frightened and anxious soley because they didnt' know what was wrong and being told I would definitely have a heart attack didn't help much. Much later when the Ativan was causing me more problems than not with withdrawal anxiety I had to call around to try and find help only to be told that there is nothing that can be done for this type of problem (anxiety med withdrawal) unless you are suicidal (which I was not). I explained to the nurse over the phone that I had been misdiagnosed and given this medication, etc., and she replied very dryly well "you've learned a lesson then didn't you". Some people out there actually border on evil in the way they treat others.

To JustMe, I agree wholeheartedly and wanted to add that my one sister was in the hospital recently for a hemicolectomy and hysterectomy at U of M which is supposed to be a very good facility (and she is a nurse and her husband is a nurse there in surgery too) and she still didn't get good care. She read an article recently that says that people going into the hospital should actually think seriously of hiring a private duty nurse to be with them and as extreme as this sounds it is probably true...though who could afford it.

Family members being present is also a great idea in order to be an advocate...when you are ill it is sometimes difficult to communicate everything that needs to be said or ask the right questions and that is where others can be so beneficial. I can't say I really had that much support when I was in the hospital because even my family didn't know what to think....I had my mother on one hand telling me I was having a nervous breakdown and that if I didn't eat I was going to die...then my one sister saying I was having psychosis because of the anxiety med withdrawal where I would feel trembly and sick and would be crying and would call her on the phone for support, and then my husband saying at one point out of frustration I realize in what to do "how many times do you have to go to the ER before you realize that what you are feeling isn't happening" (i.e. skipped beats, etc.). All loving people, all close family members, and 2 of them with their own medical problems that had been mistreated early in their condition, but still no true understanding....why expect more from strangers? I have to admit I felt betrayed on some level by even those I love and who I know love me because I felt they were even judging me at times and wondering if it wasn't all mental and I started to withdraw into a wounded shell in a way. Sometimes you are alone in a situation and try as anybody might they just don't understand. In my darkest hour that is when I prayed Jesus either heal me or take me home because I have surpassed my tolerance for this kind of suffering. Those days seemed like years. I've just had to forgive them and hold fast to who I know I am and pray for direction and strength. I truly felt like my spirit was broken by the situation, but slowly I feel like I have my fighting spirit back and I can move on. It is true I think that old saying "that which doesn't kill you makes you stronger".

[briarrose]

I had a horrible experience too when I was first admitted. The nurses on the cardiology floor were telling me that "I was the wellest patient on the floor." Their comments made me feel guilty for being there and I just wanted to go home. Some of the doctors were telling me that I was going though stress and that would explain my tachycardia. Other doctors said No. You know, same ole, same ole.

Anyway, Everyone here can start educating people by filing complaints and handing out a description of POTS. I do it with all of my doctors now. I have printed POTS notebooks with material that I have collected and handed them out to my regular doctors. If we all do a little, word will spread and eventually we'll feel like we've made progress.

As for the doctor experiment it's off of Potsweb

http://home.att.net/%7Epotsweb/POTS.html

Doctor's mind experiment (one of my favorites and something I hand out to doctors, thank you Chris for writing such a great document!)

http://home.att.net/~potsweb/mindexperiment.html

Mind Experiment for Doctors

People with Postural Orthostatic Tachycardia Syndrome (POTS) and Neurally Mediated Hypotension (NMH) have a difficult time obtaining appropriate medical care and are often subject to rude treatment by doctors and medical workers. Aside for a few advanced centers with specialized autonomic dysfunction clinics (Johns Hopkins, Mayo Clinic, Vanderbilt University, Medical College of Ohio), the medical community does not seem to want to take the time to understand the phenomena of chronic orthostatic intolerance. Here is a quick mind experiment that can help physicians appreciate the problems patients with these dysautonomia disorders face every day.

The physician should imagine the following scenario personally for themselves, their spouses, and for their own children. The physician and/or family member does not eat or drink anything for 24 hours straight, a complete food and water fast. Next the subject goes to the local Red Cross and donates a full pint of blood. Then, using all available will power, the subject pushes himself home and turns up the thermostat to 100 degrees Fahrenheit. Finally, the subject attempts to stand motionless for a period of one hour straight.

What would happen to you physiologically in the situation described above? First you would experience severe flu like symptoms, muscle aches, fever, chills, sweating, and headache. You would become lightheaded, dizzy, develop a rapid heart rate, chest and heart pain, and almost certainly pass out, possibly injuring yourself seriously. The unnatural vasodilation and abnormally low blood volume many patients with POTS and NMH suffer from can produce the same basic symptoms, caused by orthostatic stress, as the above scenario. It is interesting to note that is some cases the blood volume of POTS and/or NMH patients may be more than 30% below normal.

There are millions of humans world wide who experience orthostatic stress, the stress of standing up or even sitting up, every single day of their lives. Imagine being inflicted with this horrible condition and going to your local physician seeking help. Now imagine that instead of getting help and understanding your doctor blames you for your own severe symptoms and harshly interrogates you as if you were a common criminal.

As author of this Web site, I have received over 1,800 letters (as of February, 2002) from patients all over the world, including the USA, Canada, Australia, Taiwan, the United Kingdom, Ireland, France, Germany, Sweden, Denmark, Norway, Belgium, Holland, Spain, Argentina, Columbia, and the Dominican Republic. Many patients I hear from have horror stories to tell about their shockingly bad treatment at the hands of local physicians. Medical school professors, physicians, and several hundred registered nurses with POTS and/or NMH have also written me. Even many of these medical professionals report being treated badly by members of their own profession while trying to obtain a diagnosis for their illness.

After reading hundreds of heartbreaking letters from men, women, and even young children who were traumatized by ignorant doctors, it is clear that current medical treatment for orthostatic intolerance disorders often represents a criminal abuse of patients. Blaming the patient for their symptoms is not good science, and is the lowest expression of inhumanity in our high speed, profit driven medical profession. In past years the same moral crimes were committed against people with MS, diabetes, polio, and those with other poorly understood illnesses of the day. This sad situation appears to be slowly getting better in Midwestern and Eastern areas of the United States, while the West lags far behind. The gradual but positive trend is that more patients in major population centers are being diagnosed quickly and treated with the dignity and respect they deserve.

It is essential that all physicians become educated in how to diagnose and treat orthostatic intolerance syndromes rather than continue to abuse their own patients out of ignorance and arrogance. An obvious example of this problem is one nationally known doctor who has become so ego inflated that he advertised his radio talk show by declaring that he was "never wrong." How can a God be wrong? The medical community must establish accountability in the system so that disciplinary action can be taken against abusive doctors, including fines and/or revocation of their licenses to practice medicine. Currently, physicians are treated as royalty, with no controls on their behavior, and no boss or governing body to keep their egos in check. Power corrupts and unlike our politicians, our police, and our school teachers, physicians are accountable to no one, and thus patients continue to suffer abuse.

One possible solution to this situation, to bring doctors down from Mount Olympus and thus made accountable for their behavior, is to have every state develop lay (non-doctor) citizens' review boards to mediate disputes between patients and doctors. Just as police departments cannot be expected to objectively investigate themselves, doctors cannot reliably monitor the behavior of other doctors. The knee jerk reaction is to circle the wagons and stick up for fellow professionals, patients be ******. The medical profession is currently without effective codes of conduct and patients' rights are routinely abused. Civilian review boards would have sympathies for both overworked doctors and abused patents, and could easily throw out frivolous and erroneous complaints, while correcting serious issues of professional accountability at a much lower societal cost than filing expensive lawsuits to resolve issues of simple conduct.

The HMO insurance system has made doctor-patent relations very difficult in the United States. Primary care physicians are forced to see too many patients in a day to maintain a relaxed frame of mind, which is so essential for good judgment. Recent studies show that up to 98,000 Americans die each year from medical mistakes, and stressed-out doctors undoubtedly make more mistakes than happier, well rested MDs. HMOs should greatly increase fees paid to primary care physicians so that they are not overworked, angry, and more apt to abuse patients and make medical blunders which can cost lives. It is a false savings to provide bad medicine on the cheap when lives are at stake, as well as the dignity of both doctor and patient.

Christopher Calder

[Jackie]

Briarrose - that's it! That's the article I read. I printed it off for my doctor too (though he stuck it in my file and I doubt he read it). Thanks for posting it here!

[briarrose]

Jackie

Your welcome! I love that description of a mind experiment for doctors. Chris couldn't have done a better job. I hand it out to nurses too. I should fax it too every doctor's office I know of

Steph