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Nurse Has Autoimmune Encephalitis

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ER nurse, age 30, stricken by rare autoimmune disease

 Anti-NMDA Receptor Encephalitis, a rare and devastating disease

Anti-NMDA receptor encephalitis is a disease occurring when antibodies produced by the body’s own immune system attack NMDA receptors in the brain. NMDA receptors are proteins that control electrical impulses in the brain.  Their functions are critical for judgement, perception of reality, human interaction, the formation and retrieval of memory, and the control of unconscious activities (such as breathing, swallowing, etc.), also known as autonomic functions.  The majority of cases occur in young adults and children.  Females are approximately four times more likely to be affected than males.

Although anti-NMDA receptor encephalitis is a serious life-threatening disease, the majority of patients who receive prompt diagnosis and treatment go on to make a good recovery.  Recovery is generally slow and may occur over months or even years.  This rare disease was first discovered and named at the University of Pennsylvania in 2007.

April Kay Braker – an Anti-NMDA Receptor Encephalitis victim

In late April of 2018 April Kay Braker, a 30 year-old ER nurse fell victim to encephalitis.  At first she had mild flu like systems including painful headaches.  Still she worked three consecutive 12-hour shifts in the ER.  Then she started to behave in uncharacteristic ways and was assumed to be having a mental breakdown.  She slipped into an unconscious state and lost her ability to breath.  She was transferred to an ICU.  Then her husband transferred her to Northwestern Memorial Hospital in Chicago, the top neurological hospital in Illinois, where physicians have knowledge and experience with her disease.  April’s family and friends are praying for her recovery.  As of September 2018 April is starting to respond.

April’s education and career plans seriously altered

When she became ill April was working full-time as an ER nurse and was half way through a graduate level course of study to become a nurse practitioner.  Quite possibly she will not be able to work for at least two years.  She may or may not be able to work as an ER nurse or a nurse practitioner.  Prognosis for her level of recovery is uncertain because each case is unique.

Primary fund raising goals

April needs financial help for her long term care and rehabilitation, for her continuing education, as well as for some of her future living expenses.  Please consider helping her.  Thank you for your consideration and support.  April and her family are Christians and we do believe God will restore what she has lost.  God bless and stay well.

Secondary reason for raising funds

April’s husband and family would like to increase awareness of this disease and to encourage research to fight it more effectively.  Because of its diagnostic complexity and rarity some people experience treatment delays which hamper recovery.  Some have even been admitted to mental hospitals.

We consider April blessed because we had access to medical professionals outside the hospital to help her husband, Paul, advocate for his wife.  Most people will not have that kind of support.

April’s Journey from the perspective of her husband, Paul

My young wife, age 30, is a nurse. She began as a telemetry nurse at St. Alexius Medical Center in Hoffman Estates, IL and worked there for about two years.  To take on a more challenging healthcare role she transferred to the ER at Alexian Brothers Medical Center in Elk Grove Village, IL.  In 2017 she started working on her master’s to become a nurse practitioner while still working full time in the ER.  Then in April 2018 she accepted a nursing position at Rush University Medical Center.  April wanted experience in a city hospital.

My wife has always pushed herself to be better.  Her co-workers say she’s a fantastic and compassionate nurse.  Her other life passions include our Standard Poodle named Moses, hiking and camping, conservation, healthcare, and much more.  She’s young, motivated, and has a smile and personality that is hard to resist.

She began her dark journey in late April of 2018 complaining of headaches and registering a fever.  She continued to work and carry on with only Tylenol and Motrin.  Her condition rapidly spiraled down in early May.  The headaches continued, she had soreness behind her eyes, chills, and she was already diagnosing herself as having Meningitis.  While walking our dog on May 5 she experienced her first loss of time, forgetting how we got to the path behind city hall in Schaumburg.

The next day her symptoms continued.  Up until this point she had resisted going to the ER.  I canceled all our plans that weekend and made her stay home and rest.  On May 6 she began to shake and become anxious.  She agreed to go to the ER at Saint Alexius.  The doctor saw her and ordered blood work and a CT.  Both came back normal showing no abnormalities.

The ER doctor was comfortable sending her home believing this was stress induced.  She gave us the option to do a spinal tap but it was a soft sell and in her words for our “peace of mind.”  We decided not to do the spinal tap and April seemed to have calmed down a bit.  When we got home she became paranoid and scared.  By the next morning, May 7, she thought she was having a stroke and became very scared and hysterical.  She did not remember going to the ER.

At this point I regrettably did what most people do at this stage of her illness.  I took her to the behavioral health building to try and have her committed for treatment of a nervous breakdown.  They would not take her and sent us on our way with a 1-800 number.  I was beginning to become desperate.

Our regular doctor was out of town but her receptionist gave us her backup’s name.  This doctor was located right around the corner from the behavioral facility.  I took her in and updated the doctor on what was happening.  Thankfully, she was able to admit April directly into the neurology floor at Alexian Brothers.

April’s blood work and multiple scans all came back with no abnormalities.  Her mental condition began to deteriorate rapidly.  By May 9 she had lost most of her ability to speak and was showing signs of catatonia.  The Alexian Brothers physicians and I all thought this was a mental issue until her spinal tap came back positive for a viral infection of some kind.  There was some relief in knowing my wife was not suffering a nervous breakdown but was most likely sick with viral meningitis.

Shortly after the spinal tap results came in she aspirated (struggled breathing) and her vitals crashed.  They called in the rapid response team and I watched them save my wife’s life by intubating her airway and restoring her ability to breathe.  She remained on the ventilator with full support for almost a week.

They began to treat her with every broad spectrum antibiotic, viral, fungal, bacterial available.  Three days in and we had no improvements.  I was desperate again and I called one of her friends who is a foreign educated and trained doctor from India.

She immediately said this was not right and we should have seen improvements.  She consulted one of her friends overseas and brought back a diagnosis the next day.  She said April most likely has autoimmune encephalitis.  In short AE is your body telling your immune system to attack the brain which causes swelling of the actual brain itself.

Going off her diagnosis I immediately told the doctors to send out blood tests to check for antibodies and to start treating her proactively with steroids to bring the swelling down.  After some debate they did begin to treat her that day with IGIV (immune system suppression therapy) and steroids.  We did get positive results and she was able to breathe on her own in just over a day but she was still unresponsive.

We waited a week for the test results to come in and it was indeed autoimmune encephalitis (AE) of a specific kind known as Anti-NMDA Receptor Encephalitis.  The most common cause for this type of AE in young women is a teratoma or growth in the ovaries.  After the diagnosis it was clear she needed to be in a hospital with an experienced staff.  The scan at Alexian Brothers was unable to locate the teratoma.

Late on Sunday, May 20, the very same night we got our official clinical diagnosis, I transferred her to Northwestern Memorial Hospital in Chicago.  They began to aggressively treat her AE with PLEX which is basically flushing out her confused white blood cells and replacing it with clean plasma.  They kept her on steroids to treat the continued inflammation.  They hooked her up to a continuous EEG to monitor her brainwaves and treat her seizures proactively.

After their first abdominal MRI they found a 5 x 7 mm growth in one of her ovaries.  They scheduled surgery the next day and discovered it was indeed a teratoma causing her AE.  It was much bigger than first thought.  The surgery was successful and as I write this we are one day post operation and she has just finished her third round of PLEX.

April has been battling daily fevers, seizures, bowl distention, and a variety of other issues.  She is still unresponsive and breathing through a trach and has a feeding tube in her abdomen.  We won’t know what kind of brain damage she has suffered or what type of therapies she will need until she is able to wake up.

I have been sleeping at the hospitals since day one and have watched her fight this disease for three weeks.  She is a wonderful wife and she supported me while I went back to college to finish my BA.

Her job as a nurse is to care for people and advocate for them.  She potentially has a long road back to recovery and we will need help.

God bless,

Paul Braker

Organiser

Paul Braker
Organiser
Hoffman Estates, IL

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