Voices Across America

My Patient Story

Michelle

State: California
Congressional District: CA19

Diseases

Chronic Pain, Gastrointestinal Disease, Genetic Disease, Lung Disease, Migraine, Neurological Disease, Rare Disease

Issues and Challenges

Michelle has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Insurance Issues, Rare / Underserved Disease, Disability, Financial Assistance, Housing, Invisible Illness, Job Insecurity / Loss, Veterans Affairs

My Story

Hi I have multiple chronic medical conditions including Ehlers danlos syndrome, POTS (positional orthostatic tachichardia syndrome), gastroparesis, complex migraines, abdominal migraines, chronic and respiratory failure with hypoxia. I’ve had over thirty surgeries including surgery on my diaphragm because my stomach and intestines were in my chest collapsing my lung and shifting my heart. If I didn’t have surgery it would have twisted my heart. I had three surgeries on my back for herniated disc’s. The first and second were only two weeks apart the same disc reherniated. The third time I had to find a new surgeon because the original surgeon wouldn’t help me again because my tissues were friable and tearing when he was stitching them. The original hardware was loose already only six months later so it had to be replaced. That recovery was rough I needed a blood transfusion and an ng tube.

I’ve had a perforated ulcer and a perforated uterus. I’ve had pulmonary embolisms twice which were missed by the first hospital and weren’t found until I went to a second hospital because I still felt horrible. The second time I had no symptoms. I had a hysterectomy because I had pelvic congestion syndrome the worst my surgeon had ever seen it. The whole Covid thing has been hard.

My Motivation and Inspiration

My kids, my daughter is an allstar cheerleader and my son is a high school football player.

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