Select Page

October 28, 2020 | By Dr. Robert Larry Reese-Johnson

Robert Larry Reese Johnson Reginald 3 227x500 - Reggie's Story: A Yearlong Roller Coaster of his "Brain on Fire" Saga (Part 1)Oct. 3 – This was the date in 2019 that this all began for my husband, Reginald Johnson-Reese, and me. I arrived home from work around 5 pm, and saw Reggie on the couch. We had a normal conversation as every evening. I then went upstairs to change and went to place my clothes in the washing machine.

The laundry room was in total disarray, as if someone had fallen within the room. I asked Reggie what happened and he couldn’t remember. He said he had passed out and fallen, but couldn’t recall when, nor for how long. He didn’t want to go to the hospital, had no injuries and seemed to be holding normal conversations. Knowing what I know now, this was what I believe to be his original seizure that sparked the entire saga that I am documenting here.

Oct. 5 – Reggie complained this entire day that someone was talking in the background of his phone conversations through the earpiece he was using. He went so far as to call his mobile carrier, asking whether it could possibly be an app running in the background or an issue with the phone. I now know this was another symptom of autoimmune encephalitis (AE).

Oct. 6 – Reggie and I were on our way to church. He was unusually quiet and not making comments about my driving. When I asked Reggie where we were going, he answered me in “gibberish.” I then asked him who I was, and he answered again in the same “gibberish.”

Immediately, I took him to the nearest hospital, where we walked in together to the Emergency Room (ER). He was admitted to the University of Maryland Capital Region Healthcare at Prince George’s Hospital Center (PG), for symptoms of what they diagnosed as a stroke, though he never had all the symptoms of stroke, nothing other than confusion and not speaking correctly. He was treated with tissue plasminogen activator (TPA) medications, to which he had an allergic reaction and then small seizures.

Oct. 7-16 – Reggie continued to receive inpatient treatment for what was believed to be a stroke. During this stay he needed a feeding tube to provide nutrition and calories for him. The initial tube did not remain in place and twice it had to be repositioned and reset. 

Oct. 16-Nov. 1 – Reggie was admitted to and received acute rehabilitation treatment from the physical therapy unit at PG, progressing from what they still believed to be a stroke. Later data provided to me on three different occasions while at Georgetown Hospital, indicated Reggie had no current nor previous evidence of a stroke, based on MRIs from that facility’s images. As a result, Reggie was misdiagnosed and treated for a medical condition that he did not have any evidence of having.

Nov. 1 – I received an afternoon call and request for a joint conference with the treatment team and social workers from PG. Reggie and I were advised that he had received clearance to be admitted to a sub-acute rehab center, Capital Region Future Care. While on the call, Reginald determined that he did not want to go there, against the team’s medical advice. He was allowed to make this decision, despite the fact that he was cognitively unable to process what was being said to him, per the facility’s speech and language pathologist, who had diagnosed him with Wernicke’s Aphasia which impacts his memory and cognitive processing abilities.

I had informed the attending doctor on Oct. 29 that the doctors, nurses and therapy staff would need to prepare Reggie for the next level of care, i.e. that he would not be coming home because he had another step in the process. They obviously did not have these conversations.

At 7 pm, under the direction of the social worker and supervisor, the hospital made the recommendation of discharging Reggie for home care, regardless of his readiness. They knew the Visiting Nurses Association (VNA) could not come to evaluate him at this late hour, and they informed me of that. I told them that I could not take off from my job to provide him with care on a full-time basis without VNA coming to the home daily.

Regardless, PG allowed Reggie, without the ability to read or understand what he was reading, to discharge himself. He was experiencing agitation and bits of rage at the time directed at me as I would attempt to assist him. The supervisor of social work said to me, “Mr. Johnson has to go because he cannot stay as the insurance company is not paying for a bed here past midnight…”

Nov. 2-4 – Reggie was at home with me, during which he was unable to read his medications, had two separate anger episodes in which he attacked and argued with me. I called the VNA to come for an initial evaluation on three different occasions on Saturday and Sunday, left messages and got no response to my phone calls. When Reggie threatened me on Monday morning, I called the attending doctor on his discharge papers and the VNA and was advised to contact 911.

The ambulance and police arrived and the EMT confirmed that Reggie could not determine the correct date and year, remember what the situation was, nor that he had previously attacked me. Reggie was given the option to allow me to drive him back to PG’s ER, which we did. He remained there, in a bed in the hallway for about 15 hours, before being transferred to his own room. He was disoriented, agitated, combative with me, and cognitively unable to process.

Nov. 4-8 – Reggie was readmitted to PG for review of medications and the symptoms he was experiencing. During this time no further MRIs were ordered, nor were any other tests done to determine whether he was experiencing the typical symptoms of a stroke, which could have determined something more significant was going on with him.

Nov. 8-10 – He was discharged that afternoon again to receive home care from the VNA. I called them twice that day, three times the next day, and twice again the following day. Again, no one responded to my call to come to do an evaluation or schedule an evaluation of him until the third day, while we were on our way to church. I let the caller know we would be back by 1 pm and they could come then. I was informed that this would not happen and that they were unsure if they could come on Monday.

While at church, Reggie experienced a seizure towards and was transported by ambulance to Medstar University of Georgetown Hospital (Georgetown) for assistance. There, he was treated with anti-seizure medications and had images taken through MRI and CT scans.

Nov. 11-13 – Because the doctors were concerned when Reggie’s level of

speech didn’t return to his baseline, he received care in the Neurology ICU unit, because the doctors were concerned that at this time Reginald did not return to the level of speech that was his baseline prior to the seizure. That was an indicator that he was suffering from something else other than a stroke. 

Nov. 15 – I was informed by Dr. Mayson, a neurologist and stroke specialist, that Reggie never had a stroke, because the MRIs from PG and the ones obtained from Georgetown showed no evidence of dead areas of the brain—the major sign of a stroke. This should have been discovered by the neurologists at PG and upon that information, if they did not know what Reggie was experiencing he should have been medically transported to a facility in the area prepared to treat other possibilities.

Georgetown immediately began to treat Reggie for AE, a diagnosis that from the onset of symptoms requires an aggressive treatment course, and we know now that is actually the disease that Reginald had for six weeks. His misdiagnosis and receiving treatment for the wrong ailment may have caused further relapses and a continuation of the disease to the progression that it has now. This has also had an impact on his time of recovery and long-term effects as his life proceeds.

As a result, I filed an online complaint with the Maryland Joint Commission on Health and the attorney general’s office for investigation of the above.

Nov, 14-15 – After review of both the PG and current MRIs, it was determined that there was no evidence of stroke activity within Reggie’s brain. This is when the neurologist believed that Reginald may be suffering from AE, and began treatments with five days of steroids and IVIG. They also performed a procedure in which a tube was inserted through which five infusions of plasmapheresis  could be administered. The attending neurologist conducted a lumbar puncture to obtain cerebral spinal fluid for testing, as all other tests were coming back negative for all other diseases or cancers.

Nov. 20- Dec. 1 – Reggie was to receive five plasmapheresis infusions over the course of 10 days. I was informed by the technician that was doing the treatments Nov. 20-21, but that he could not have three treatment days in a row. Therefore, he would have one on Nov. 23, then again on Nov. 25 and 27.

When I arrived at the facility on Nov. 25, I was told that he was completed his treatments. Naturally, I questioned what I was told and said he would need at least one more treatment, maybe two. The nurse responded, showing me on the computer that they had recorded the treatments. I questioned the dates because I had not seen them there that day. I was ignored and they attempted to reassure me that he was done with those treatments.

On Nov. 23, Reggie had surgery to insert a GI tube for feeding as he was not eating on his own. He was up from recovery by noon. I was with him from early that morning until the evening. When I was leaving, I told the nurses’ station that he was bleeding into the bag attached to his stomach tube and the tube attached to his nose; I was informed that this was normal clearing or the stomach contents. I questioned this as it was now just seven hours’ post op and this was not the case for the entirety of the day.

At 5 am the following morning, I got a call from the head of the surgery team that my permission was needed for emergency surgery to replace the tube and reset it as Reginald had internal bleeding overnight (which I was not informed about by the floor nurses that night) as the tube had come loose from the abdominal wall. I let them know I’d told the nurses as to my concern prior to leaving and was ignored or told not to worry.

After the second surgery was completed, the surgeon came to the room and explained the person performing the first surgery placed only two staples to secure the tube, thinking it would stay with that way, despite given Reggie’s level of agitation and movement during the surgery. Four staples were placed in during the second surgery as that is what that surgeon customarily does.

In advance, I had let the medical team know he is severely agitated with tubal restriction, and that this tube remaining in place was a problem at the first hospital, but I was ignored. The lead team surgeon stated to me that I should not worry and that what happened with Reggie would be a topic of their next team meeting. I was furious!

His final night, he was moved overnight to the ICU because his oxygen level dropped to a dangerous level. Once more, they neglected to tell me that this had happened. 

Dec. 3-5 – Reggie was moved twice more because he was no longer in need of IVIG treatment. At this time, the plan was discussed with me by his attending team was to obtain another lumbar puncture, conduct more MRIs, and proceed to Rituximab treatments, as Reggie was now 12-15 days from his last plasmapheresis treatment, and there had been little or no change.

Dec. 11 – I was called for a meeting with Dr. Tomatore, the medical team and a palliative care doctor. During this meeting, they told me Reggie’s diagnosis was Creutzfeldt-Jakob disease (CJD), fatal without cure and no treatment. It was explained that he would not get better, but would progressively get worse and most likely quickly decline to the point of dying. They added his overall life expectancy was a year or less, and that more than likely he would contract an infection, and this would take his life. We were advised to change his resuscitation orders from resuscitate to do not resuscitate as there was no hope of Reginald surviving this disease, so we complied.

This devastated my family and me, and I also told that because Reggie would need a nursing home and/or hospice care that I would need to work with the social workers to attain Medicare and/or Medicaid for the long-term care for Reggie. This was heart-wrenching because the date was right after our anniversary, Reggie’s birthday, Thanksgiving and within weeks of Christmas. 

Dec. 12-13 – After researching CJD, I sent an email to Dr. Tomatore in which I requested a second opinion, including the exact version of CJD that Reginald they’d diagnosed. My question was regarding the signs I was seeing that weren’t  

consistent with what I was reading from CJD. I also asked for an explanation of all the tests and images used to determine that this was CJD, as I understood that the most conclusive and newest tests used to determine CJD came back negative, but they were ruling that out because it had a 10 percent false-positive rate. Dr. Tomatore responded that they were excellent questions and requested my phone number to call me, which was within the email. I never received a call.

Dec. 16 – Reggie’s sisters and I met with Dr. Mayson and the team to review the the MRIs taken prior to the treatments, the tests and additional information related to care he received before being transported to Georgetown. Dr. Mayson explained that the MRIs conducted prior to treatments or the anti-seizure medications demonstrated the areas of the brain that were impacted were the outside portions of primarily the frontal temporal lobe.

He also said the CSF tests came back with three of the four tests positive for the protein for CJD, and these tests were 85 percent accurate. The team again stated that there was nothing more they could do except keeping Reggie comfortable, and that I should look into long-term or hospice care because CJD takes an aggressive downhill path to death. 

Dec. 11-27 – Reggie was still under the care of the neurology team and the palliative care doctor, and they were treating only his symptoms. They didn’t conduct tests for images, fluid or blood after the November treatments were completed. It felt the team was no longer concerned for him, and needed him out of the hospital to make space for someone that was not going to die.

A few days before Christmas, the medical and social work teams came into Reggie’s room to tell us he was denied both Medicare and Medicaid. What happened was they submitted incorrect income to receive the benefit: my income wasn’t as much as they indicated, nor was he receiving a pension. With the information at hand, they recommended discharging him for either hospice or home health care, to be paid for by me or us.

I was insulted and livid because the figures that I provided them with were misinterpreted by both them and the disability office. I reiterated the correct information for them to resubmit for review: Reggie doesn’t have a pension; we do not have assets; nor do I make a salary that is able to pay our monthly bills as well as pay for a hospice or long-term care. As a result, I refused signing on for discharged anywhere without a review of the corrected information.

Shortly after Christmas, Reggie began speaking his name, interacting with the medical team and nurses, and the palliative care doctor. He was showing signs of progress not in alignment with the CJD diagnosis! On Dec. 28, Dr. Mayson examined him, stating he was more interactive than he had ever seen him and added, “Well, Mr. Reese, medicine is not an exact science.”

Right before the new year, Reggie wasn’t in his room when I arrived around noon. I inquired at the nurses’ station as to where he was, hopeful he’d been taken for more tests based on the improvement. They scrambled to his room as they had just left it, and he was in the bed. They opened the bathroom door and we saw Reggie on the floor. He had gotten up from the bed on his own and fell, as he had either walked or crawled to the bathroom. He told me they said I was coming and he wanted to take a shower. After changing and cleaning Reggie, they had unfortunately failed to set the alarm on the bed, nor did they set the wait-belt restraint that he had to ensure he not get up by himself.

Read Part 2 here.

Robert Larry Reese Johnson Reginald 2 500x260 - Reggie's Story: A Yearlong Roller Coaster of his "Brain on Fire" Saga (Part 1)

 

Your generous Donations allow IAES to continue our important work and save lives! 

seal - Reggie's Story: A Yearlong Roller Coaster of his "Brain on Fire" Saga (Part 1)

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - Reggie's Story: A Yearlong Roller Coaster of his "Brain on Fire" Saga (Part 1)

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - Reggie's Story: A Yearlong Roller Coaster of his "Brain on Fire" Saga (Part 1) 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

CONTACT US


352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

Autoimmune Encephalitis Trivia Playing Cards

Translate »