When doctors don't listen to patients (inspired by MM's thread)

[witzend]

When I was 32 years old I got a pulmonary embolism. This was about the time I had gone through quite a bit with L and was a nervous wreck. My doctor didn't respect me much, but he did treat me when I was ill.

Let me tell you, it hurts like nothing you have ever felt before. Of course, you don't just go around diagnosis'ing a PE. I went to the doctor with a sharp pain in my chest, and coughing up thick sputum. They said "bronchitis" - maybe pneumonia. If you start coughing up blood, let us know. Now, I was used to them minimizing everything about me, so I didn't really think it was a big deal when flecks of blood came up with my cough. But, I did go to the doctor because I was in so much pain, and it had been a week and things were digressing. They said "pneumonia". Now, mind you I've had pneumonia before and I had never felt as though someone had stabbed me in the chest before.

So, they gave me a few pain pills, and I took their antibiotics, and continued to get worse. "Shallow breathing" would be an understatement. It's amazing that I didn't pass out from hyperventilation. I suppose the only thing that prevented that was that I was breathing so shallowly, only into my esophagus, really, that I wasn't "hyper" anything but fast. The pain got so bad that I was in bed on my last pain pill and husband was at work and M was at school. There was a phone on the nightstand and I called my doctor's office, but the lady couldn't hear me because I couldn't get enough breath to speak. So I inhaled a great big breath and said loudly and quickly "I need to make an appointment with Dr. so and so." She said "We don't have time for these games" and hung up on me. I couldn't reach over to dial the phone again, and for some reason I thought it would be embarrassing to have EMT's break down my door, so I took the last half of my last pain pill and went to sleep.

About 5:30 I woke up alone in the dark. I had to pee, and I couldn't even roll over in bed from the pain. You could hear my lungs rubbing against my pleura. It sounded like heavy suede being rubbed together. husband and M came home about an hour later, and he had to lift me to get me to the bathroom. It was like torture, but "helping me up" was out of the question. We went to the hospital, and it was the day of the Rodney King riots. It was surreal watching it up there on the tv. They gave me a mild pain killer, and drew blood, did some x-rays, and couldn't really determine whether I had suffered a PE. They couldn't get to my artery after about 6 tries for an AGB. They kept saying that I had to sit up on the gurney for this draw and it was just so painful. They finally gave up and admitted me. They told me that they were sure that I'd had a PE, but they'd need to do a pulmonary angiogram in the morning. In the meantime they gave me a dose of heparin by IV and two vicodin. They called my regular doctor, who told them that I was a bit of a complainer, and that he had diagnosis'ed me with pneumonia and that should be enough. They wouldn't give me anything more for the pain, I was to wait 6 hours.

In the morning, the thoracic guy showed up, and spoke to my doctor by phone while in my room. By this time I was coughing up great chunks of bloody sputum, which he examined. He told me that after discussing it with my doctor and as there was no positive test result from the night before, he was sure I had pneumonia, and I should go home, and start walking daily to regain my strength because I "should be over the pneumonia by now." They would not be doing a Pulmonary Angio, there was no reason to.

Of course, I didn't recover. At least not for several months. I went to my regular doctor's office within the week and saw one of his colleagues, and they set me on his exam table and left me there for about 20 minutes. I lay down because I couldn't hold myself upright. When the doctor came in she said "Witzend, stop being such a big baby. I have never seen a patient make such a fuss about pneumonia before! Nobody is buying that you're 'that sick', so just go home and start taking your daily walks." Needless to say, I didn't bother going back. But I went back to the thoracic guy a few weeks later, and complained of the pain and that you could still hear my lung rubbing against my pleura. He was somewhat concerned and took and xray and found that my other lung had collapsed, so home again with more instruction to exercise. You have to know that I never once took a walk. I couldn't move! I saw him again in 4 weeks with another xray to make sure that my lung had reinflated, and said I still had some pain and was concerned, he kind of "hmmm"ed, and that was it.

I never saw that doctor again. Years later because of my Muscular Dystrophy making walking so difficult and not knowing that it would affect my legs, I couldn't figure out why breathing was so difficult with exercise. Eventually my new doctor got around to the Pulmonary Angio, and what do you know? There is a grapefruit sized dead spot on my left lung, just where all that pain was. I let it go, but a few years later I was watching ER, and the story line had something to do with doctors who belittle patients who have depression and their patient died. There but for the grace of god go I. I sent my old doctor a letter and told him that when the test I should have had all those years ago was done it was found that I had had a PE, and he could have killed me by telling me to go home and take a mile walk every day! I told him that being depressed does not exempt a patient from other physical illness, and that there had been no reason for him and his colleagues to have been so rude to me even if I had been over-reacting.

He actually called me back. He felt badly about what he had done and caused the other medical professionals to do, but he did believe at the time that there was no reason for further testing because I just didn't fit into the category of people who have unexplained PE's.

 

[ThreeShadows]

MWM, I did not "shoot you down". I told you what the reality of the situation was in my husband's 24 years of experience. I'm bowing out of this conversation now.

 

[Estherfromjerusalem]

Witz, what a shocking story. I am horrified.

Here in Israel our health system is considered very good. I suppose it is, but even so, it depends on who is your family doctor. Our family doctor has been ours for many years, and he saved my life 33 years ago when he was a new young doctor and I had very bad pneumonia (almost died, was in hospital for a whole month). So I feel loyal to him. However, he has almost killed me twice. First of all, when I had real problems walking, and in the end when he referred me to an orthopedist for my legs, and luckily my paramedic son happened to be here in my home when he overheard me telling my sister on the phone about a strange feeling I had in my chest, and without my knowledge he ordered the intensive care ambulance to come (he told me "Mum, I just want my friends to take a look at you"). They came -- and it was off to the hospital, an angio, two stents put in, two arteries were 95% blocked!!!

Another time, I had been having strange symptoms -- fingers tingling, seeing stuff like broken glass out of the corner of my eyes, my fingers not really doing what I wanted them to do. When it disturbed my typing at work, I went to my doctor and told him "I feel like I am slowly having a stroke" and he said, "Oh no, not at all, it's nothing. Your blood pressure is just a little bit high." OK. I went away. A couple of days later I was sitting in a girlfriend's house and we were chatting, and suddenly out of my mouth came, instead of words, gobbledegook. I asked my friend to take me to the hospital. My left carotid artery was blocked, and I was having masses of mini-strokes because little bits of stuff were flowing up to my brain. I was operated on (and believe me, that is not minor surgery). A few years later I had the same with my right carotid artery, but by that time I could recognise the symptoms and I just took myself to a private doctor who had been recommended to me, and he also operated.

Believe it or not, we are still with the same family doctor. He is due to retire soon, and since he made those two enormous booboos, he has been so considerate to me and to my husband. But we are keeping tabs on our own health. One son is a paramedic, two daughters are nurses, my husband is an ambulance driver and a medic, and I always read medical stuff in the newspapers and on the net. So we more or less tell HIM what we want, and he always obliges.

I suppose the bottom line is: doctors are human beings, who can make mistakes just like anyone else. Today we all have lots more knowledge than lay people have ever had before. It's an invidious situation for the doctors, I think.

OK, those are my experiences of misdiagnosis, or even non-diagnosis.

Love, Esther

 

[Star*]

I don't have such a bad story - but maybe this will help ........

I had a problem and no one for years could seem to help me and it was such a simple (to me now) diagnoses. I weighed 298 lbs and had been to see specialists, and had tests out the wazoo. I even saw a doctor that dealt espcially with thyroid problems in Georgia. Well doctor after doctor guessed at my problem, and I even left one doctor who (overweight herself) scolded me and said I was sneaking food. I wasn't I stuck to the ediets she prescribed, and for a urologist who dealt with diabetics she never - not once did a blood glucose test - which by the way would have cleared up the big mystery. I was prediabetic. The whole ordeal nearly had me going to loose my girl parts. Had I had the money I would have had it done to - an unncessary surgery BUT - based on the symptoms I presented - warranted.
So I thought - WELL I'm going to try one more doctor (Because after all I did not like the answers I was getting - and so I sought out one more opinion)
The new guy was personable - and told me to make a list of EVERYTHING wrong with me......I thought FINALLY someone that will listen. He didn't. During our conversation he faded out somewhere else and I said "And the monkey just ran up the flag pole.....did you see it?" and he answered "Yes." And I got so bloody angry I gathered my things, I gritted my teeth, and I started to cry and got up mid whatever he was saying and I stormed out. I was a mad, large, 300 lb sick woman - who was done with it all.
As I walked crying down the hall - A 69 yo nurse practitioner caught me and said "WOAH WOAH what's goign on here, and I stated "NO ONE CARES.....NO ONE REALLY CARES....and at this point I was sobbing." so she pulled me into her office and we talked for nearly an hour. AMAZING.

She was a graduate of the university of WV. She was a nutritional specialist and her speciality was womens health. SHE worked for doctor whats his face and assured me he was a competent man. BUT also told me that if I did not like him (personality wise) she would see me herself provided he approved it....and he did. He just wanted me healthy. I did everything she told me to do - UNDER his orders.......and lost 160 lbs....and have never felt better. I lost her as my NP when I lost my insurance - BUT.....she called me AFTER like - six months later to see how I was doing and said when I got ins again - to come see her - and could I afford REDUCED payments of XX dollars to keep coming....she was phenominal.....and I love her. (and she said the reduced $$ was the docs idea)

I'm still doing good - and I had to find a doctor I could afford.....but now I work for the city and they have FREE health so - I'm going to check that out...if it's not all up to snuff - I'm going to her. AND....consequently him - he is brilliant - I guess you just give to get sometimes and in his case....while he is smart - he just got gyped in the social graces. I don't need a buddy - I need someone to fix me........the other would have been a bonus - but I got that in her - and relate WAY better to a female MD type - oddly enough in therapy - I like a man. Go figure. OH an just fyi among the things I was misdiagnosed with from earlier docs? lupus, cushings, scleroderma (yeah that one knocked me for a loop) and then brain tumors - not once, twice and not from the same doctor....so while I didn't appreciate the mis diagnosis....when I did not like or agree with the diagnosis? I also knew I had the ability to go elsewhere and ask for a 2nd, 3rd or fourth opinion - because like anything else - any profession. there's good and bad in everything. i'm more picky about my veterinarian than i am my md.....lol.

So maybe you can find yourself a NP????

 

[witzend]

Esther - it's shocking that he would let you have a 2nd episode from blocked arteries without being concerned! I'm glad that he saw the error of his ways. Come to think of it, the doctor I saw back then was pretty new, too. At my age now, I would think of him as a "kid". Then again, my latest doctor was worthless. He told me that I was mistaken that I have Muscular Dystrophy because "only little boys get that". IOW, he knows of one type of Muscular Dystrophy, and there are 9 major forms of MD (mine is one). I tried to count all of the muscle diseases under the MD umbrella just now, and I got lost at 60.

Oh well. Next year I will have another opportunity to make an annual exam appointment and to choose a new doctor. For now, I'm stuck with this Schmoe...

 

[InsaneCdn]

Oh, right, Star... NPs... seem to be a new "breed" on the medical front. After going in circles for most of 15 years on a fairly minor health issue of my own... I now have an NP on my team... and SHE did the referrals that defined the problem and that got me onto the waiting lists for the right specialists... problem not solved yet (long wait lists!) but... I'm booking my next appointment with the NP because... she listens, she knows her stuff, she knows who's who and she gets stuff DONE.

 

[susiestar]

There are a lot of NP's around here and many are excellent. I think many nurses chose that route when it became an option because they had seen so much happen and they generally spent more time with patients, so it was natural for them to start calling the shots with the dr supervising. I think having NP's also helps the docs be better at their jobs. They don't have to shoulder the entire workload, and an NP can step in or take over when needed, and generally helps them get things done, things that a nurse or assistant wouldn't be able to do.

MWM, most people have NO idea what a pharm co rep does. I was SHOCKED when I learned how much some of my classmates from college made, and their budgets for lunches, parties, gifts and other 'business expenses'. I couldn't do the job, just is not something I would be good at. But it is amazing how influential the reps are. They tell the docs what the medication does, why it is better than other options, do NOT tell the doctor the cost of the medication most times, and they do not 'dwell' on the side effects. What bugs me about the drug reps is that they often laugh and joke about how easy it is to get a doctor to push a medicine and to brush aside their concerns with the answers the marketing team wrote for them. That just bugs me.

But drug reps DO serve a function,and it could be worse. The drug reps could be allowed to call reg people and talk them into using their product. Can you imagine some of our relatives if someone from the drug co called them and said they 'needed' drug Z? OMW it would be AWFUL!!! This way the reps talk to people who SHOULd have the education to understand and quesion what they are told.

IC, I have only seen the NP at my pain docs' twice, but boy does seh get stuff done! Got all kinds of non-medication options approved by my ins co, including a tens unit which now isn't covered because they sell them as 'personal massagers' online, and she got it all done right before we lost insurance. The only thng I didn't get done was the sleep study. But we have ins again so maybe I can have that done soon!!!!!!

THis is an interesting thread, in my opinion. People are more interesting than just about anyone.

 

[BusynMember]

My NP can and does prescribe medications when needed, but does not even try to go where she shouldn't. I love her to death. The best part about her may be...well, uh...too much information? (blush) I never knew any doctor to do a PAP as gently as her. I mean, she is so gentle...it barely hurts at all. (Still blushing). And I had heard about the power of drug reps by people who had intimate knowledge of doctors. I do not know if it's true because it is hearsay.

Actually, drug reps do get to influence the regular Joe or Jane. How many drug commercials are on television? I think that sort of advertising should be banned, like it is in Canada.

 

[TerryJ2]

Hound Dog, that's so awful that your dr literally mocked you over your 1st time diagnosis. I would switch doctors.

I just visited my family dr to lower my dose of Effexor because my muscles are so tight I feel like I'm spring loaded and about to tear a muscle just by sneezing. He said he'd never heard of that but was willing to taper the dose, see whether that helps, and maybe totally drop the medication altogether. I like it when you can work as a team. Of course, he knows I'm not going to blame him if it doesn't work.

by the way, I went home and immediately Googled the medication, just to remind myself, and also, once I picked up the new, lower dose scrip, read the insert. The 4th or 5th side effect was muscle cramping and spasms! lol. I'll be sure to bring that along next time. He will not be insulted. He will be happy to see it documented.

Anyway, I hate it when doctors laugh at stuff ... one well known dr on TV laughed about herbs and vitamins, and actually scoffed, "Can you imagine, some people think that tree bark can cure headaches?"
Uh, what rock has he been living under? Native Americans (to name just one group) have known for thousands of yrs that willow bark contains salycilic acid, which is aspirin. doctors like that need to be kicked in the teeth. Better yet, their names need to be publicized so that patients, aka consumers will steer clear of them and shop elsewhere.

As many pointed out here, doctors are human and just like professionals in any field, some good, some bad.

 

[AnnieO]

Sheesh, Terry, I read "tree bark" and all I could think of (before I even got to the next line) was... DUH!!! Willow bark = aspirin. Argh.

 

[DDD]

My husband just sighs and shakes his head when he sees me on the computer checking our Rx's before going to the pharmacy. I'm not sure how many sites there are (probably thousands) but I go to WEBMD punch up the Rx and read what the site says BUT THEN I read patient comments about the drug.

Often the input is "not petty" or reassuring. Like everyone I know that there are side effects so I'm not looking for perfection. on the other hand, for example, I am suppose to be taking a statin for cholesterol control. It is not "new" and in fact my husband has taken it for years. Reading somewhere between eight and a hundred patient reports...it scared me. I am not following the doctors directions of taking one a night. I have opted to take 1/2 a night for a couple of months before I up it to one. One of the side effects is RLS which my husband and is boyfriend both experience but had no idea it was triggered by the statin they both take nightly. Some patients had more serious side effects...and then remained after ceasing the daily dose. I realize one day I may have a stroke and it may be my fault, sigh, but I'm just not going to jump right into a potentially damaging medication with-o easing it into my schedule. Fingers are crossed that I will have no problems but weaning or titrating myself makes me feel less strssed.

by the way two girl friends of my adult easy child daughters are Reps who at fifty own awesome property outright and are soon prepared to retire. If you're bright, personable and ready to travel it's a great career. DDD

 

[Hound dog]

Terry, once the nephrologist got past his attitude issues, he actually was a really great doctor....exceptional. But he had a rotten personality, and on bad days a really horrid bedside manner. I used to joke with husband that I thought the man had bipolar the way his moods would be so drastic one way or the other. lol With this particular doctor, I CAN say he moved into the area to help people who needed him. I was very sad when he finally retired. I have not heard any praise for the man who took his place, but have not gone to him so I can't offer an opinion. With the cardio when she copped her attitude, well, I was just in no mood to put up with it period, so I didn't.

As for this subject of drug reps influencing what docs prescribe thing. I dunno. I know it IS how docs learn new medications are available, but I also know it's up to the docs to do their own research on them before using them too, at least to some extent. I can't say I've had any experience with docs scripting medications just because they're popular or the newest thing on the market. Most of the ones I've used seem to have the opposite attitude, script them only when known medications don't seem to work, or script them cautiously to try them out.

I've had both good and bad experiences with NPs, but overall I don't have an issue with them. We went through a thing about 10 yrs ago where doctor offices let their RNs go to cut costs and started hiring medical assistants instead. Here a medical assistant is trained to do office paperwork ect, but also trained on vital signs and many of the routine tests / procedures that are done in a doctor office. I have met some good ones, but in this area most of them aren't the brightest peas in the pod and others are downright stupid....they might be good behind the desk but with patients...well they'd be better off behind the desk. One thing NPs did was bring RNs back into doctor offices, which in my opinion is a wonderful thing, and patient care when right back up, which is also a wonderful thing.

 

[TerryJ2]

Hound Dog, I have learned that my feedback if valuable for my doctors. Sometimes pts have reactions and never tell the dr. (Of course, if they're dead, they can't talk!)
If we explain things quickly and clearly, and unequivocably (iow, it could not have been a reaction from something else) doctors will listen and respond (and record). In that respect, they rely on us as much as we rely on them.
I am glad you were able to create a working relationship with-your nephrologist.

DDD, that reminds me--my former bff took Boniva for awhile and it was very expensive. When she found out about the side effects, she took it every other day. She rationalized that not only did she save money, but she wouldn't have the permanent side effects it caused.