My Mom’s Personal Story

My family has always suffered from a variety of medical problems. Alzheimer’s, cancer, heart attacks. You name it, the Feltmans have been affected by it. We rely heavily on what the doctors tell us, but also what those around us have dealt with.

When my mother went to the hospital for the first time after passing out at the park, the doctors told her there was something wrong with her. They performed what is called a Splenopneumopexy, where they sewed her spleen into her diaphragm, going to her lungs. This was where everything went wrong. The not-so-common procedure was a good decision in their mind because her case was so out of the ordinary. Her health was not “normal”.

What they thought would fix the problem only worsened it. The doctors did not fully “hear” the symptom. Within years, she began passing out more frequently. The most terrifying one was when we were at a local grocery store and she fainted in the middle of the soda aisle. The entire cart, filled with food, fell on top of her. I heard her hit the ground with a sickening thump. That was when I knew that the surgery performed did not work. In fact, it made her worse. After that day, I told her that I could not see her go on like this; she had to talk to her doctors to get to the bottom of what was happening.

The doctors in Cincinnati could not do anything for her. She had to drive to the University of Virginia to receive the medical care she needed. There, they inserted a shunt into her body. For those who are unaware of what a “shunt” is, the medical dictionary defines it as: a passage or anastomosis between two natural channels, especially between blood vessels. She had such a rare vein disorder that she had to leave the state to find someone who could provide proper medical care.

The Splenopneumopexy was ineffective because the doctors at the time did not truly understand what was happening inside her body. This could be due to error on their part, but also due to the fact that communication between my mother and the doctors was lacking. They did not comprehend all of her medical problems before the surgery and actually ended up making everything worse.

When I started reading Talking About Health: Why Communication Matters, I did not expect to find something that related to my life so quickly. My mother was not “normal” when it came to her health. In fact, she was so abnormal that even her doctors were rendered ineffective. It could be due to the fact she was the only case of such a rare disorder that they did not have any other stories to rely on. There was no other patient like her. They could not even diagnose what she had; they could only generalize.

We rely so heavily on stories and communication to know what to expect in terms of our health. When we have nothing to go on, we panic. Our doctors are stumped. We have to tell our symptoms in complete detail or we risk a misdiagnosis.

According to CBS, 12 million Americans are misdiagnosed each year. In the video below, Dr. Jon LaPook gives an explanation as to why that is and potential solutions to the problem.

-Gabriella Feltman

 

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7 thoughts on “My Mom’s Personal Story

  1. I can understand why misdiagnosis is so common. Although humans communicate with each other on a daily basis, it is often difficult to communicate about health issues, especially to a strange health professional. When I was in intermediate school, I began having trouble eating. I would often feel as though I was choking on my food. Although I could still breath while having that choking feeling, I knew that I wasn’t experiencing normal swallowing. This feeling began to occur more frequently so I visited my pediatrician. After examining my throat and feeling my stomach, the doctor had no idea of what could be wrong. They sent me in for a test that required me to swallow a barium mixture as the nurse watched it flow through my body on an x-ray machine. According to the nurse, all was normal. I, too, went to the University of Virginia medical center to search for an answer. By this time, I could barely consume liquids. The doctor there believed that I had an eating disorder and this choking feeling was made up in my mind as an excuse not to eat. (He also had my mother convinced, even though she and I both new that eating was basically my favorite thing to do and I had a positive body image) Knowing this was not true, I argued, and he decided to do an endoscopy. This is a procedure where they use a camera attached to a tube to view my esophagus and stomach.
    This determined that nothing was wrong, but I was prescribed a muscle relaxer which they believed would help my esophagus stop contracting while swallowing. What the doctor initially believed was a mental disorder turned out to be a physical issue that has improved and now I can enjoy all the food that I wish to eat.

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  2. I agree that it seems so easy to misdiagnose a disorder–especially a rare one. Like you said in your post, maybe the doctor hasn’t seen the issue! As they say in the video, so many symptoms are just incredibly common and it can be hard to correlate each of them. I think the simplest example of that is if you type your symptoms into a site like WebMd. You can put in that you have a cough, a bit of chest pain, and a headache and you’ll get a “diagnosis” ranging from the common cold to a pulmonary embolism! This past summer, I experienced a bad misdiagnosis after I thought I had a sinus infection. I went in and spoke to a doctor and was given antibiotics and sent on my way. A week later, I became even more ill and had developed an allergic reaction to the medication I was on. When I went back to urgent care (and saw a new physician), he had tests run and diagnosed me this time with Mono! A pretty easy mistake to make, and looking back, I’m sure if I had been clearer about my symptoms, I may have been diagnosed correctly the first time.
    Luckily, there are doctors that have knowledge of those more rare conditions like your mother’s and specialists exist who are trained to recognize the “abnormal”.

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  3. I feel that it is so important for nurses and doctors to communicate fully and accurately what they are doing with a patient. In your mom’s case, you said the communication was lacking. This should never be the case, and I feel sad that it was. Some of these “simple” surgeries that doctors tell patients they are going to perform require a lot more than the patient realizes. I can’t imagine being put under anesthetic and not knowing whats actually going to be done while I am under. I feel this is something doctors and nurses need to work on. Communication in these kind of situations is key. It can be wedge between life and death. Thanks for sharing!

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  4. Thanks for sharing the story! I feel that this is something very common allover the world. I am from Sri Lanka and something similar happened to my grandmother, back home. Her blood sugar levels dropped suddenly and she went into a coma. She was taken to the emergency room and the doctors said that their was something wrong with her thyroid gland. They started treating her thyroid gland. I love looking at the reports and trying to figure out what it means with the medical knowledge I have. I noticed that her platelet count had risen up so high on the day she was admitted to the hospital, but the doctors did not notice it. I went and showed it to the doctor and he was shocked by it. Soon after my grandmother was taken into the ICU. She got a heart attack soon after because of the untreated, high platelet count, the blood was too thick to flow. Sadly, she passed away.It was a determinate error, the doctors could have noticed it before I did and treat her. I really hope that your mom is better now. Thanks again for sharing this story.

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