Photo credit: Katelyn Anderson
Recently, Matthew Holt published a blog post from Jess Jacobs, on the Worst Healthcare Experience of her life. His notion to redouble efforts toward changing our system for the better sparked my interest in the story of another young woman similarly afflicted.
Katelyn Anderson has EDS and was “officially” diagnosed with POTS five years ago. She holds a B....S. in Communications and was starting her graduate studies when one morning she woke with a racing heart, dizziness, and blackened vision. Physicians informed her there is no cure and she must resign herself to feeling exhausted and nauseous for the rest of her life.
Despite this, she has continued searching for methods to ameliorate her disease symptoms, which can include hypotension, poor circulation, headache, fatigue, tachycardia, nausea, shortness of breath, and unpredictable syncopal events. Doctors have compared her quality of life to that of a patient on dialysis and her level of fatigue to a person with congestive heart failure.
This remarkable woman is just 28 years old. Katelyn receives routine infusions of saline and nausea medications through a port in her chest so she can stand without near syncope. Her port is her life line. An in-home caregiver assists her with activities of daily living such as meal preparation, grocery shopping, and bathing.
Determined to make a difference, Katelyn has been using her talent as a photographer and blogger to inform and educate others about P.O.T.S. Most recently, Governor Jay Inslee and Mayor Patty Lent proclaimed October as Dysautonomia Awareness Month for Washington State and the City of Bremerton.
Katelyn moved to Kitsap County three years ago, yet has been unable to transfer her care locally due to lack of access. She travels back to Spokane for care from a variety of specialists. Katelyn has been forced not only to coordinate her care, but navigate a world in which she is unfamiliar. “I do not want people to be at a place in their life where they have to take healthcare into their own hands”, she declared.
Katelyn is right. Our healthcare system is a disjointed assortment of people, processes, and centers lacking vital interoperability. For Katelyn, POTS is likely secondary to having EDS. Definitive diagnosis requires eliminating other causes, such as Addison’s Disease, where the adrenal glands are unable to produce enough cortisol. Cortisol is important for immune function, blood sugar regulation, blood pressure stabilization, and metabolism. In high stress situations, we need increased cortisol release to function optimally.
If supply cannot meet demand, fatigue, low blood pressure and dizziness result even progressing to loss of consciousness. The gold standard for diagnosis of primary adrenal insufficiency is an ACTH stimulation test. A baseline cortisol level is drawn, ACTH is administered, and then cortisol levels are checked 30 and 60 minutes later.
Below is a timeline of the illogical road blocks Katelyn had to navigate to schedule her test.
5/10: An endocrinologist in Spokane recommends the ACTH stimulation test.
5/12: Katelyn calls the local infusion clinic for appointment. The referral has not been received.
Late July: The test is authorized by insurance and scheduled for September. Three medications must be discontinued for the test to be accurate meaning Katelyn is resigned to increased symptoms and even lower blood pressure, for the next six weeks.
9/12: Katelyn is denied her lab test when she arrives at the infusion clinic because the referral came from an endocrinologist outside the county. The lab had not informed Katelyn of this when she made the appointment.
9/12: The local infusion clinic called the only local endocrinologist to request an order and is denied. Physicians do not write orders for people who are not established patients.
9/12: By afternoon, the only option was finding a local PCP to write an order. This was difficult as ACTH stimulation tests are typically ordered, administered, and interpreted by specialists.
9/13-15: Katelyn calls her three clinic options in our county. None are accepting new Medicaid patients or are uncomfortable accepting her due to medical complexity. This is a common problem in our area.
9/16: Katelyn’s sister convinces her physician, who is currently not accepting new patients, to accept Katelyn as a patient.
9/22: Katelyn has an appointment with her "new" PCP who rewrites the order. Katelyn hand delivers it to the infusion clinic requesting it be given to the nurse manager.
9/29: Katelyn calls to make appointment at infusion clinic. The order was lost. A request for second order from her physician was made by fax. The infusion clinic would not schedule appointment since they did not have an order. Katelyn requests to see Nurse Manager and was unsuccessful.
9/30: Katelyn called infusion clinic, the second order has still not been received. The Nurse Manager is in a meeting.
10/5: Katelyn returns to the infusion clinic. They have not received a fax with the second order.
10/7: Katelyn calls the infusion clinic. The order has still not been received. She calls her physician. No response. She calls the infusion clinic again. By afternoon, no response and the day ends with no order and no plan.
10/10: Katelyn calls in the morning and in the afternoon, no progress is made.
10/11: Katelyn’s mother (ARNP from out of town) goes with her to the infusion clinic. No order has been received. The front staff offers little help to make progress. The Nurse Manager is available after Katelyn’s third request. The first order had to be re-written to be correct. The receptionists are managed by a different company and were not communicating with nurse manager. Nurse Manager facilitates the order from physician’s office and test is scheduled for 10/12 at 830am.
Accomplishing this task took more than 5 months. Medical care should be more accessible, equitable, and favorable for people like Katelyn. We must fix our broken system and eliminate arbitrary barriers for patients and physicians. Katelyn and countless others suffering from chronic disease deserve our time, effort, and above all, the best quality patient care.
Katelyn is an inspiration, she strives to see the beauty in life’s ordinary moments and capture them with her lens. View her captivating work at www.umberheartphotography.
Read her story at https://www.gofundme.com/