My doctor nearly killed me

IMG_2076I don’t share my medical issues on social networking because they are personal. However, I recently learned that an online friend is going through a “mystery illness” that may be related to her heart.

I know my body better than anyone else, doctors included. Last summer I knew something was wrong, and I had to push and push and push. I finally left one provider (Trinity) and went to another provider (Sanford) because I was tired of being dismissed.

The following is my story, in letter form, because I sent this letter to my former provider’s CEO as a complaint letter. I’m sharing this story so that others don’t have to needlessly suffer for months like I did.

My letter to my former provider –

***

My story starts in early June and lasts through early October. Trinity’s lack of serious attention and concern for my symptoms could have killed me. Because of Trinity’s lack of attention and concern for my symptoms, I suffered physically and emotionally for those four months.

With Trinity – Because of high blood pressure, my doctor put me on Lisinopril. She also ordered blood work/labs since I’d never had them done at Trinity. I was told the blood work and labs all came back within normal levels.

I took Lisinopril for about a week, and I suddenly started to have chest pressure and chin tightness. I had several mild episodes while visiting my family in Delaware. During one serious episode, I had my brother take me to the emergency room. At emergency, I was given an EKG. I was told it was normal.

I called the Minot Trinity doctor’s office the next day and left a detailed message. I continued taking Lisinopril. I finally called the doctor’s office again, and was told the doctor never got my message. She told me to stop that medication, that I might be allergic to it. She prescribed amlodipine besylate. I took that for a couple weeks. My symptoms persisted. I was told to stop taking that prescription.

The doctor ordered an EKG. I was told it was normal.

The doctor ordered an echocardiogram. I was told that was normal.

The doctor then suggested Nexium, that possibly my chest symptoms were heartburn. I took that for two weeks. The symptoms persisted.

I called the doctor’s office again. The nurse suggested I talk to the cardiologist about my echocardiogram – I asked why since I was already told it was normal. She said something like “just to be sure.” Wasn’t the cardiologist sure the first time he looked at the echo?

The nurse set up an appointment with the same cardiologist. I called again and talked to the nurse, voiced my frustration, and asked why should I spend another $25 for an office visit when I was already told the echo was normal. I was terse and rather agitated.

The nurse later called me back (after talking to my doctor) and said that the doctor suggested that perhaps some Xanax would help calm me down.

I felt like I was being written off as a hysterical female.

I cancelled the cardiologist appointment out of frustration. I decided to go to Sanford.

With Sanford – Within one week of my appointment with Sanford, I took a stress test, was told I had a 90% blockage in a coronary artery and had a stent implanted. I have been told by numerous professionals that this was the first test that should have been conducted.

For four months, I experienced discomfort and pain, anxiety and worry. I had to keep calling and asking my doctor’s nurse, “What next?” I knew something was wrong. I counted on Trinity to help me and heal me. They did not.

***

So, if you know someone who is experiencing medical provider angst, tell them to keep at it, keep calling, keep asking questions. And if you are not happy with how you are being treated, go elsewhere!

 

21 Comments

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21 responses to “My doctor nearly killed me

  1. OMG. Why is a patient responsible for his or her own best care by being more knowledgeable than a normal person ❤

  2. So glad you got a second opinion. We nearly lost an extended family member recently due to arterial blockage.

  3. As a provider who worked with children with various developmental disabilities, I learned (finally) that parents did know their child better than I did. They didn’t always know the vocabulary I knew and sometimes communication was difficult, but the best care for them and for all of us occurs when patients and practitioners can talk freely and with mutual respect. I’m really sorry this didn’t happen for you, Karen.

  4. I came to the conclusion several years ago that every patient needs a strong, vocal advocate. Unfortunately your story is repeated far too often. I’m so glad you had the fortitude to listen to your gut …quite literally.

    • karenrsanderson

      I am sort of glad the first doc suggested the Xanax – that’s what pissed me off enough to get another opinion.

  5. Oh my what an awful experience. Thank goodness you finally found the right doctor and the situation was given the attention needed. The older I get the more I realize that we do ourselves a disservice if we don’t take an active part in our own medical care, seek alternatives when appropriate, and listen to–and trust-what our bodies are telling us.

  6. I’m glad you persisted with this, Karen. Stick with your new provider.

    • karenrsanderson

      I’m glad I persisted too – otherwise, I might not be here to post this blog. And bet your a** I’m sticking with Sanford.

  7. I hear these stories too often. So glad you took the bull by the horns and are now better. Thanks for sharing this with us.

    • karenrsanderson

      I’ve heard more than a few stories like this (unfortunately, regarding the “first” provider mentioned above). Speak up if you don’t feel right, right?

  8. Audrey A keith

    I know exactly how you feel. I’ve tried to get my husband to go elsewhere for years, but he won’t. I was just exhausted and “not good” for nearly 9 months, same kind of treatment, &I finally figured out how to help my cough. /we went to /sanford in /fargo so he could have tests, and I’m really impressed with them. They didn’t really come up with any solutions, either, but I’m at least satisfied that they know what they’re doing, and tried. I know everything cannot be fixed, unfortunately, so we’re disappointed, but we’ve done our best.

    A friend had had a lot of trouble, mostly with A-fib, but changing doctors has made a big difference for her. It may not always be easy, but often it’s the right decision. I’m so glad you did.

    • karenrsanderson

      I wish more people would speak up. I think a lot of doctors (sorry, those of you who are doctors or love a doctor), but it becomes rote. They do the same thing over and over and over and it’s supposed to fit every patient. When I went to Sanford, that woman talked to me for an hour – an hour! And asked me all sorts of questions I’d never been asked before. I felt more cared for in that hour than in all the appointments and tests previously experienced at the other provider.

  9. I’m so sorry this happened to you. When we are a patient, we have rights but few of us realize or speak up or push enough, I think. Here’s the Patient’s Bill of Rights we have in New York: https://www.health.ny.gov/professionals/patients/patient_rights/docs/english.pdf

  10. karenrsanderson

    I didn’t think of this at the time! I should have asked for that (and carried it) after the first or second appointment. There are several items on the NY list that were certainly NOT followed in my treatment.

  11. I’m so glad you’re a strong woman, and fought back. WE KNOW OUR OWN BODIES. We need to stay away from doctors who don’t look us in the eyes and LISTEN. Thanks for sharing your experience, Karen. We all need to be vocal about taking care of ourselves and not believing anything a doctor says.

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