Prior to her death, a courageous young woman named Jess Jacobs, who suffered from POTS (postural orthostatic tachycardia syndrome), wrote about the worst health care experience of her life. It is a somewhat horrifying account of hospitalization in Washington D.C. Her goal was to work toward meaningful health care changes in the system for the better.
When I came across the story of another young woman afflicted with this disease, it sparked my interest. She has given me permission to share one of her many experiences with barriers of her own.
Katelyn Anderson has EDS and was “officially” diagnosed with POTS five years ago. She holds a communications degree 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 lifeline. 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 POTS. 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, WA 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 health care into their own hands,” she declared.
Katelyn is right. Our health care 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: 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 geographically isolated area.
9/16: Katelyn’s sister convinces her physician, who is currently not accepting new patients, to accept Katelyn.
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 an 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.
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. 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. The front staff offers little help to make progress. The nurse manager is available after Katelyn’s third request. Nurse manager facilitates the order from physician’s office, and test is scheduled for 10/12 at 8:30 a.m.
Accomplishing this task took more than five 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.
Niran S. Al-Agba is a pediatrician who blogs at MommyDoc. Katelyn Anderson can be reached at Umber Heart Photography.
Image credit: Katelyn Anderson