“FIRST DO NO HARM.” Hippocrates

This is a personal account of my thinking on the state of medicine in the United States today. My account is based on many years of experience because of genetic anomalies passed down for at least five generations in my family. I watched my father and his siblings struggle with glandular and metabolic disorders from their mother. I and at least one brother also fought the same disorders and now my two daughters and one grandson are afflicted.

Our youngest daughter’s medical problems began at birth even though she seemed very healthy. As she grew she thought she was like everyone else. People said they had headaches, so her headaches were normal; other people were “double jointed”, so when her knees pushed backwards or her elbows dislocated, that happened to everyone else, too; when she laughed or got upset, lost all strength and fell down, that also must happen to other people. In short the following rule applies:

There are many things your children will accept as “normal” and not tell you about. There is no way as a parent you can realize many things that afflict your child. All you can do is assume your child is healthy unless there are family diseases where the symptoms are clear, or you have a really good pediatrician.

When our daughter became acutely ill I recognized at once that she had suffered a thyroid storm. When I tried to tell the doctors about our family history and what I knew, I was told that, “This isn’t about you. Stop trying to get the attention.” Many years later our daughter finally had her thyroid removed and there is not a single endocrinologist or surgeon who knows what actually destroyed it. Even now there are doctors baffled by her condition and wonder if the thyroid is responsible for all of her problems.

She was finally diagnosed by lumbar puncture (LP) with a condition known as Pseudotumor Cerebri (PTC). The neurologist handling her case had told us specifically that the LP was a “benign” test that would give them a lot of information. After the test he decided that the radiologist hadn’t conducted the test properly and therefore the diagnosis was wrong. When I asked when they would redo the test he yelled at me, “WHAT KIND OF A MOTHER ARE YOU WHO WOULD SUBJECT YOUR CHILD TO A FAR FROM BENIGN PROCEDURE?” Let me get this straight. Last week the test was “benign”, but this week it’s not and I’m a terrible mother not to know that. Of course the rare diagnosis of PTC was later confirmed and twelve years later our daughter is still fighting the condition.

During the early days of her acute illness, just breathing near a doctor made me a Munchausen’s Syndrome by Proxy suspect.

Doctors really do not like patients (or their parents) who can diagnose themselves, especially when they turn out to be right. Even doctors can change their minds about their tests or diagnosis, but then they can always blame the patient or their parents for their second guesses.

I was near death when I was finally diagnosed with severe Grave’s Disease, which I thought was just a thyroid disorder. Even though I had a Radioactive Iodine Uptake Test ( a now antiquated test) which showed I had an uptake of 93, when a reading of 40 and over was considered highly dangerous; when I had a blood pressure reading of 160/140 (absolute fact); and I went from 105 lbs. down to 93 lbs. in only seven days, the doctors wanted to put any treatment off. They told me they would “try to do something for you in a month or so.” Fortunately a doctor friend steered me in the right direction.

Sometimes getting a diagnoses does not mean you will receive treatment, or that the doctors who see you will be competent. You may have to change doctors more than once. Check around and ask lots of questions.

Medical records are another source of concern to me. Everyone talks about electronic records and how much more “efficient” they will be. Yep, they will be out there, available to anyone, doctor or not. They will be out there, right or wrong. Two of my white as milk children, one male and one female, have been misidentified as “tall, overweight black females” on some tests put in their records. One was in Chicago and the other in Seattle. When they both reported the mistake they were told the records were part of their permanent record and could not be removed, but an addendum correcting the record would be added. However, the records obviously belong in someone else’s file and there are lots of pages between the reports and the addenda. And where is the correct information that should be part of their records?

Next question: Do doctors really read the records? I guarantee that many doctors don’t so much as glance at records until they are walking into the patient’s room. They probably don’t even notice any addenda.

At one point my daughter was being told she had a “flat affect”, so lots of psychiatrists were being sent to her room for a “mental health” diagnosis based on her “flat affect.” We didn’t know what they meant. I arrived in Chicago, stayed with her all day and saw that she did a lot of talking to friends and medical people. Her voice was getting quite raspy towards the end of the day when a quite arrogant pulmonary specialist entered the room, turned his back on me, and proceeded to question my daughter. She answered a question and he said, “Oh my, you do have a flat affect.” CLICK, went my brain, that’s what they mean. “Are you aware her right vocal cord is paralyzed?” I asked. He whirled around, glared at me and asked what I had said. I repeated that her right vocal cord was paralyzed. He stared at me while he processed that information then turned and barked out to her, “Why is your vocal cord paralyzed?” She smiled sweetly and said, “Because the surgeon here slipped and nicked my recurrent laryngeal nerve when he removed my thyroid.” He stood there staring at her for a few more seconds, then turned and left the room without another word. No one had even read the record that covered the thyroid surgery. Once they got that information out all the psychiatrists disappeared, along with the accusations of a “flat affect.”

On a local radio program the doctor described what happens when a doctor is trying to operate a computer while also trying  to interact with a patient. It just doesn’t work and it’s frustrating to both the doc and the patient.  And what good are records if they are wrong or go unread?

Enough for now. I have further more serious medical matters to address soon.

Leave a Reply