Voices Across America

My Patient Story

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Lucinda

State: Vermont
Congressional District: VT01

Diseases

Bone / Muscle Disease, Cancer, Immune Disease, Lung Disease

Issues and Challenges

Lucinda has encountered: Medical Discrimination, Out of Pocket Costs

My Story

My story is about how patients with arthritis diseases are often not cared for appropriately because they are viewed as just having aches and pains.

One night I awoke with such severe pain in my left knee that I was vomiting. I could not tolerate to be touched, I was in so much pain. My husband called an ambulance because my heart was racing. I had to be carried out of my bed on a stretcher and taken to the ED of my local hospital. My husband went with me, following the ambulance by car. Once in the ED I was given some pain medication and then ignored. My husband did not know how to advocate for me, and even though the ambulance staff informed the ED staff that I was tachycardic, they ignored that as well as not determining the source of my pain.

They asked my husband to take me home after being there less than 2 hours. The next morning I saw my rheumatologist who pulled out tons of horrible fluid from my knee and my white blood count was over 80,000. She was concerned I was septic. Turns out it was a major flair that caused all of the pain and over-reaction of my body against my joint - some sort of crystal arthritis going on in my knee joint. Antibiotics helped as did an increase in my RA medications.

After the emergency, I felt I needed to deal with how I was treated, so no one else would experience being dismissed as having 'just' arthritis pain. I contacted patient advocacy at the hospital and we walked through how I was treated and the negative impact it had on me. She processed my concerns to the ED staff and the training department for the ED doctors and staff. I felt like there would be improvements and other patients would be treated better because of my efforts. My husband and I worked together also to figure out how to be better advocates for each other in situations like these - how to ask questions and stand up for our needs. It was a very negative situation but I worked hard to make a difference and prevent future negative experiences.

My Motivation and Inspiration

My motivation to advocate for myself in this situation was to hopefully prevent something like this happening again - to me and to any one else. Often there is a need for training or better understanding of symptoms to get necessary care and prevent negative outcomes.

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