Help Solve Ellen's Medical Mystery

You know the saying “when it rains, it pours” - well our good friend Ellen Coates has been amidst a hurricane for the past 2 years.

For those who don’t know Ellen’s story, I will start in November 2021. At the time, Ellen was 29 years old, working as a nurse in the Pediatric Cath Lab at Riley Children’s Hospital. She had created a beautiful life with her husband, Brandon. She would frequently go to PureBarre classes, garden, and loved long walks with her husband and their dog, George. She was beginning to plan the next steps in life, including hoping to grow her family in the coming years. On November 23, 2021 Ellen was at her family lake house celebrating Thanksgiving. She had been relaxing on the couch, and when she tried standing up she fell. She couldn’t get her foot to move and knew something was wrong. From there, she started having excruciating pain and numbness that began in her legs, but eventually would spread throughout her body. A little over a month later, she was diagnosed with Guillain- Barre, a devastating neurological disease that caused the nerves in her body to demyelinate, or break down and stop working. Her body was attacking itself, and it got to the point where she was unable to get around without a cane or wheelchair, and needed assistance with the most basic of tasks. Ellen was completely debilitated and in constant nerve pain.. Unable to work, she spent her days managing many doctors appointments including intensive physical and occupational therapy, where she slowly began to regain nerve conduction and independence.

Ellen worked tirelessly for over a year so that she could return to walking independently, regain fine motor control for tasks such as writing, and eventually, working. Although she was still dealing with flare ups and having to manage her activity and pain levels, she was healing and life was starting to feel normal again.

But then the next storm hit.

On June 1, 2023 Ellen was at work and noticed her resting heart rate was extremely high and she was having difficulty breathing. She then started having pins and needles down her arms and legs. Her coworkers rushed her to the ER, and she was admitted to the Neuro ICU at Methodist Hospital where she stayed inpatient for 9 days. During this time and in the following weeks, Ellen has had countless tests run, but unfortunately no clear answers for the autonomic dysfunction and refractory hypotension she is experiencing. Ellen is home from the hospital, but she is still not better.

She has once again found herself unable to live a normal life. She is unable to work, and her medical team has not been able to figure out a clear plan for healing. Ellen’s blood pressures are being “stabilized” by medication, but continue to drop dangerously low at times and are severely limiting her ability to function. She is struggling with nausea, fatigue, is frequently light-headed and dizzy. She has been receiving weekly IV infusions to help maintain her blood pressure for many weeks now and will now start receiving these infusions 2-3X/week. She was even seen in the ER again a few days ago for pre-syncopal episodes and low blood pressure.

At this point, Ellen needs help. She needs a second opinion. She needs to figure out the root cause of why her body continues to attack her. Ellen has had piles of medical bills in the past 2 years and has been unable to work for months on end. There are a few working diagnoses at this point in time, but everyone is honestly stumped. Her medical team would like her to be seen at Mayo/Cleveland/Vanderbilt and has begun that referral process.The current recommendation for treatment from one potential diagnosis includes therapy that is not covered by her insurance, and this is only to try and manage the symptoms she is having- it does not solve the issue of what is causing her autonomic nervous system to be unregulated.

Ellen needs our help and support. She did not want me to create this page, but after persuading and pleading has finally allowed me to do so. As a friend I want to help in a way that is meaningful, and as a healthcare professional I understand that donating is going to support the medical care that Ellen needs and the costs associated with traveling to get care.

Ellen is one of the most empathetic, caring, and supportive people I know. She has dedicated her life to being a pediatric nurse, giving her all to help severely ill children and their families. Ellen is an amazing friend, wife, daughter, and sister. She is always the first to ask questions on how things are going and the first to help anyone in her life who is struggling.

Please consider donating to support Ellen and her husband if you are able. Ellen and Brandon are exhausted from all that the last 2 years have brought upon them. Our hope is that we can lift up this amazing couple and remind them that they are not alone. Any amount will go directly to helping her get the care she needs and will help relieve some stress during this very difficult time.