Speak Up!

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YOU must be your own health care advocate.
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The sad predicament of a fellow Literotican brought this subject once again to the front of my mind this past week. You MUST be an advocate for your own health care. There are good doctors and bad doctors and hurried doctors and worried doctors. They are all human. You must make them listen and if they won't, move on. Find a doctor who will listen and truly address your concerns.

As a child and then a teenager, I was sickall the time. Sinus infections... earaches... all manner of upper respiratory problems kept me home from school. The doctor had me tested for all sorts of things, even sent me to an Ophthalmologist to have my eye scanned for diseases. It wasn't until I was about sixteen and my father developed allergies that my doctor finally thought to have me tested for them. (Apparently the fact that my mother had been receiving shots for environmental allergies and on medication for it most of her life hadn't previously been enough to suggest that I should be tested.) Being a young person, I didn't know enough of how to advocate for my own healthcare or even what to look for, but I was beginning to learn.

The Ophthalmologist I was sent to asked me many questions. I think I was getting frustrated at one point trying to explain to him what was wrong and make him understand. He looked at me and very pointedly told me that I was doing a good job and that Imust continue to insist with my doctors on explaining exactly what was wrong, never to let them assume anything. I remembered that for some reason but I don't think I really took it to heart.

A few years later, in a basic Psychology course during my first year at college, our teacher introduced us to thePhysician's Desk Reference, a book which is available to look at in any public library and lists all the pharmaceutical drugs on the market and their known interactions. He was explaining that we must be an advocate for our own healthcare and be aware of drug interactions. Of course, now one can ask for that information at the pharmacy and be reasonably certain that the information you get is correct. (There is the problem with unknown interactions but that's neither here nor there. The only solution there is not to take medicine you don't truly need.) Again, I heard this teacher's message about being your own healthcare advocate and now I had a good label for it, but I still didn't quite take it to heart.

I had allergy shots for four years and then was told I didn't need them anymore. I explained to the doctor that I was still having a lot of sinus trouble. He repeated that no one needed allergy shots for more than four years. If I didn't need allergy shots, I insisted, then I neededsomething because I was still having trouble. The doctor repeated himself many times, tried to get me to leave, but I stayed in the chair and insisted that there was something else wrong. Finally, very angry with me for being so stubborn, he ordered a food allergy panel to be done. (I really believe he was just trying to get rid of me.) The blood was drawn and it turned out I had several major food allergies including common food staples such as milk, wheat, peanuts, eggs, tomatoes and corn. Thankfully they've gone away, but I had to avoid those things for a goodlong time.

Still, I hadn't learned my lesson it seemed. I had always had painful menstrual periods but things had worsened considerably. The symptoms were exactly what my sister had described to me and she had been diagnosed with endometriosis so I made an appointment with an Obstetrician Gynecologist for the first time. I went in, met the doctor and had my exam. I explained all my symptoms and that my sister had endometriosis and that we suspected my mother had when she was younger. The doctor looked at me and, with a straight face, told me all the pain I was going through was only because I was overweight. I wasn't too sure about her diagnosis but she was the doctor so I went home and spent the next year in increasing agony.

Finally, one day on the phone with my sister, I was sobbing because I couldn't find any relief from the pain. I would stand for a minute, sit for a minute, lie down for a minute, then walk for a minute becausenothing relieved the pain. The pain was becoming more severe and longer lasting during the month and no longer occurring just during that week of my period. She convinced me to go to her doctor. I made an appointment with him and was surprised that he saw me so quickly. I outright cried when he sat me down and said there was no reason for me to be in such pain. He set out a course of treatment that included the pill and, when that didn't completely take care of it, laparoscopic surgery to clean out the endometriosis. I even got to see a video later of him burning the endometriosis away with a laser. The space invaders had been zapped!

Unfortunately, I see people making the same mistakes I did over and over. A few years back, my father went to his doctor for some difficulties he was having. X-rays were taken and he was told that they would call if it turned up anything abnormal. They never called so he went on with life. He never talked about being in pain or anything like that so we didn't know to check up. Finally, a year later, he was urinating blood and decided he'd better get back to the doctor. Low and behold, the x-rays in his file showed a tumor in his bladder. He was very lucky. It was a slow growing cancer and two rounds of chemotherapy saved his life.

Don't ever let a doctor's office tell you they will call IF the test results turn up anything. You need to hear from them whether or not the results are positive.

I have dealt with wonderful doctors in my life. I've also dealt with complete yahoos. Regardless of whether your doctor is a wonderful person and a brilliant doctor, he or the office staff can still make mistakes. You need to pay attention and speak up for yourself. Make a list of questions before you go in to see your doctor, take notes when you're there, read about anything you are diagnosed with. There are several good web sites set up by governments where you can get reliable medical information. Know your own body so you can tell when something is wrong and describe it accurately. Never ignore symptoms andinsist on being listened to. It could save your life.

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ChopinesqueChopinesqueover 2 years ago

You may have saved lives with this. How many writers have that? Kudos.

betrayedbylovebetrayedbyloveover 10 years ago
Excellent

As a veteran of bad diagnosis I know exactly what you mean. A must read for anyone having a medical problem not treated properly.

mapili50mapili50over 10 years ago
The BEST advice!

I have two similar stories and I can't thank you enough for writing about this subject matter.

First:

I've had frequent UTIs for years. Over the years I've heard it all, the most frequent comment being that I somehow don't know how to wipe myself after using the toilet. A female OB-GYN once told me that I had to stop drinking coffee. That sounded extreme to me so she said "Well, I guess you'll keep getting UTIs"

In my 30's I finally found an OB-GYN who said that things didn't sound normal. I was sent to a urologist and everything finally made sense. I had a bad fall when I was 4 years old. That created a lot of scar tissue which means that I will always be susceptible to UTIs.

Second:

I was released from the hospital last month for Sepsis. It was severe with a 40% mortality rate. Sepsis is so deadly because it has a wide variety of symptoms so it's easily misdiagnosed but it also progresses extremely rapidly.

My story is long and includes two ER visits before ending up in the cardiac surveillance ward. I will be forever grateful to the first ER nurse who listened and documented how I felt and added his own questions about Sepsis.

The ER doc ignored my complaints of seizure-like shivering and extreme headache/fevers because my fever was low at the ER. I was released with a kidney infection and UTI.

There are many lawsuits for deaths resulting from misdiagnosed Sepsis so I'm sure that the nurse's comments triggered a more thorough review. The next day I was phoned and told to return immediately to the ER. By then I was in serious bad shape with a 103 temp. I was given oxygen, morphine, antibiotics and an IV drip and my blood pressure dropped to 75/40.

I'm lucky to be alive because someone listened. He was the only one who didn't rely solely on test results, he looked and listened to how I felt.

AnonymousAnonymousover 16 years ago
You forgot part 2

Check on the Internet for official complaints about your Doctor and if you are not happy move on and find a cure then send a complaint in about your doctor.

pope32767pope32767over 16 years ago
Excellent advice, but ...

... not always feasible. Sometimes when you are sick enough or in enough pain you just can't *be* a credible advocate for yourself. There are too many details to keep track of, and your body is insisting that you pay attention to *it*, not to whatever stupidities are going on around you.

<p>That's when it pays to have a trusted friend or loved one who can advocate for you. My wife and I both have chronic ailments, and we play this role for each other as often as necessary.

<p>In particular, the sexism of the medical establishment can be used against it. When either of us can do the job, we debate on whether a male or a female voice will be more effective in the current situation. If it's a matter of laying out what the facts are, I tell the story, sounding totally technical and fitting right in with the preconceptions of the listener. If it's a matter of getting a favor from someone who is free to grant it or reject it, my wife more often manages matters, either by being ingratiating, or by implicitly threatening to cause a scene.

<p>In one of the latter situations, my wife was (quite legitimately, not as a deception) crying loudly with frustration at the blocking behavior of a particular gatekeeper. The gatekeeper, who was obviously terrified of "scenes", appealed to me: "Can't you get her to stop?" I replied very calmly, "No, but you can." We got what we were after.

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