‘I Didn’t Think I Was Dying’: Girl Thought She Had a Stomach Bug – But Doctors Discovered a Deadly & Incurable Disease
When her skin changed color for the second time in six months, she had already chosen a homecoming dress and had a full school calendar.
The resulting fatigue was more than just adolescent burnout.
It was the initial indication of a fatal illness that would rule her early adulthood.
A 15-year-old girl did not become terrified when she first became ill.
Her symptoms didn’t appear concerning, just bothersome.
They went away with rest, so she attributed symptoms to food poisoning or the flu.
However, what started out as a small issue swiftly grew into something very significant.
In a matter of days, she found herself facing a disease that would require everything she had, and more.
Her life would be turned upside down by a medical emergency that would defy all expectations of recovery and leave her navigating a future that would be permanently altered by disease.
A Warning Sign in Yellow
Emma Mendelssohn hardly had time to comprehend that her skin was yellow when she first spotted it.
She was in the midst of her sophomore year’s pandemonium in May 2018.
She was balancing sports, homework, and the anticipation of summer.
When she noticed the odd color in the mirror, she emailed her doctor, who advised her to monitor it.
Then, suddenly, it was gone.
Since there were no other concerning indications, Mendelssohn continued his life.
The ensuing fatigue seemed more easily explained by late nights, academic stress, and the typical tedium of adolescence.
The summer went by in a haze of typical adolescence until October, when her complexion became yellow once more—deeper, darker, and it didn’t go away.
The weariness was bone-deep by the week of homecoming.
She was depleted, not simply exhausted.
“Okay, this isn’t normal,” I thought.
That’s not cool,” Mendelssohn remembered.
She had a gut feeling that something was very wrong.
She went back to the doctor a few days prior to the school function.
With the exception of one that hadn’t been processed yet, the majority of the findings from the bloodwork that was ordered looked fine.
It was Tuesday.
She was promptly brought to the emergency room by Wednesday.
Homecoming Weekend Becomes a Horror
Mendelssohn was surprised to find himself in a hospital at the end of Halloween week.
She expected to be reassured when she entered the emergency room; perhaps she would receive fluids and medication, and she would return to school in time for homecoming.
Rather, she was met with urgent greetings from medics.
Her body was exhibiting signals of extreme distress, and her liver enzymes were out of control.
The plan was divided even after she was given a bag of pills to try to stabilize her liver function: if the drugs were effective, she would receive steroid infusions at Oakland Children’s Hospital.
She would need an emergency transplant at the University of California, San Francisco (UCSF) Medical Center otherwise.
Mendelssohn remembered, “I felt sick, but I thought I just had a bad stomach bug or maybe the flu.”
“I didn’t think I was dying.”
However, the numbers continued to decline.
The team moved her to UCSF in a matter of days.
After more testing, autoimmune hepatitis—a rare disorder in which the immune system targets the liver—was ultimately diagnosed.
She also had Hashimoto’s disease, another autoimmune condition that affects the thyroid, as if that weren’t enough.
Time was of the essence, so steroids were started right away.
Mendelssohn’s liver was rapidly failing, and the doctors bluntly told her that she just had a week to live if she didn’t get a transplant.
“Yeah, those odds are pretty self-explanatory,” I said.
Add my name to the list,” she said.
Mendelssohn didn’t really know what autoimmune hepatitis was at the time.
Her body was failing her, and that was all she knew.
However, a rare and complicated illness lay underlying the alarming diagnosis.
Autoimmune Hepatitis: What Is It?
When the immune system unintentionally targets the body’s liver cells, autoimmune hepatitis, a rare and chronic liver disease, develops.
The immune response targets the liver tissue itself with antibodies rather than viruses, which leads to inflammation and eventually severe damage.
If treatment is not received, this persistent inflammation may eventually cause cirrhosis, or scarring, and ultimately lead to total liver failure.
Since autoimmune hepatitis may not exhibit any symptoms in its early stages, it might be challenging to diagnose before harm has already occurred.
When symptoms do show up, they frequently include joint aches, exhaustion, rashes, acne, an enlarged liver, and in certain situations, such as Mendelssohn’s, jaundice.
All ethnic groups are impacted by the condition, however studies indicate that women are four times more likely than men to have it.
Additionally, it is extremely uncommon, affecting only a small percentage of people worldwide.
No remedy exists.
The majority of individuals need lifelong medication, while it can occasionally go into remission with treatment.
Mendelssohn would learn directly that stopping treatment frequently results in relapse, or the disease reoccurring.
Doctors decided that medicine wouldn’t be sufficient in her instance.
Her liver had deteriorated too much.
She was added to the transplant list a few days after receiving her diagnosis.
Shortly after that, despite its own difficulties, surgeons carried out the procedure that would grant her another opportunity.
After the Initial Transplant
Although Mendelssohn’s life was spared by the procedure, her life was not immediately restored.
Her recuperation was difficult, drawn out, and not at all what she had anticipated.
She had to start again when learning basic movements.
“I literally had to relearn how to walk — that took a week and a half,” she stated.
It took time, perseverance, and practice to even turn on her side or push herself up in bed.
Although one of her bile ducts was stitched shut due to a problem during the donor organ extraction, the operation itself had gone smoothly.
Massive setbacks resulted from that little detail.
The pain persisted for months.
The healing process took years.
She said, “Everything was just so extended,”
Her body had a hard time accepting the replacement liver for almost three years.
But stability came back after a while.
Eager to return to the normalcy she had missed, Mendelssohn completed high school and enrolled at Colorado State University.
She felt like herself again after moving away for college.
“I had a fantastic freshman year.
“My sophomore year is also fantastic,” she remarked.
However, the old symptoms started to reappear just as she was starting to get used to her new life.
The Yellow Tint’s Comeback
Mendelssohn was familiar enough with her body by her junior year of college to be able to spot abnormalities.
Her internal alarm was triggered by the return of that familiar yellow tinge, which was initially subtle.
She got blood tests done while on Christmas break in the hopes that it would show something easy to treat.
“Don’t worry, I’ll be back in a week,” I assured everyone.
“I didn’t return for a week,” she subsequently stated.
The results of the tests were worse than she had anticipated.
Her liver enzyme levels were very high, and this time, the first medication wasn’t working.
Remaining optimistic, doctors suggested an endoscopic retrograde cholangiopancreatography (ERCP) operation, which is usually used to insert stents and clear obstructed bile ducts.
However, her stats kept getting worse even after that.
She was returned to California for more examinations.
She had biopsies, ultrasounds, MRIs, and every other scan and scope imaginable at UCSF.
None of it, however, clarified why her liver was failing once more.
Her team finally performed a test for something they almost ever thought about: donor-mediated rejection, a rare syndrome that is so unknown to most transplant recipients.
“Nobody understands this,” they claimed.
“We’re pretty sure it’s not what you have,” Mendelssohn recalled.
“How about my luck?
I had it.
There was doubt surrounding the diagnosis.
Even experts at a leading transplant institution had little precedence to follow because donor-mediated rejection was so uncommon.
There was only trial and error and waiting; there was no set procedure or timetable.
Eventually, Mendelssohn was put on immunotherapy, which is a combination of drugs more frequently used to treat cancer.
The regimen was harsh: twice-weekly infusions, followed by a six-hour third injection.
She experienced severe side effects that left her exhausted and ill for days at a time, only to have to repeat the process before her body had a chance to heal.
There were no updates or checkpoints during those eight weeks, so it was impossible to determine whether the treatment was effective until it was over.
Furthermore, because of her weakened immune system, Mendelssohn was particularly vulnerable to Epstein-Barr virus, which can cause lymphoma.
Although she did have the virus, she barely averted that disastrous consequence.
It was a haze of needles, nausea, and her care team’s quiet.
She had no choice but to wait.
Once more, confronting the possibility of death
Mendelssohn’s fear of death had subsided by the time she experienced her second health problem.
It had happened to her once before, and she had survived.
She had discovered, however, that survival did not equate to assurance.
The stakes seemed higher this time.
She was older and more tired from the struggle to survive, and more conscious of what it meant to be ill.
She was terrified of receiving another transplant.
The first had left a lengthy path of emotional and physical scars and had robbed her of almost three years of her life.
She was aware, however, that another transplant might be her only choice if the immunotherapy failed.
Mendelssohn made the choice once more when the time came.
And she decided to fight again.
She wasn’t fearless, but rather that she wasn’t done with life.
One of her motivations was her younger brother, who was still in high school.
She wished to be present at his graduation.
The individuals she cared about were the ones she didn’t want to leave behind.
She also knew in private that she wasn’t prepared to leave.
Nevertheless, she hesitated before making her decision.
She asked.
It made her angry.
Nevertheless, she proceeded.
Deciding to Stand Up for Herself
By that time, Mendelssohn realized that managing autoimmune hepatitis was more important than winning.
There would be no remedy, no last-minute intervention that restored normalcy.
This illness, together with the ongoing risk of relapse, would always be with her.
She was no longer as afraid of that fact.
How she decided to cope with it was more important.
Riley and Molly, her best friends, were also aware of this.
They didn’t press Mendelssohn when she said that she wasn’t certain she wanted another transplant.
Rather, they put their support into action by establishing a nonprofit organization to increase knowledge and advocate for additional research on autoimmune liver illnesses.
Mendelssohn’s resilience extended beyond her ordeal.
It was in the way she kept showing up for her life, according to her own terms.
She was fighting for more than just survival.
She wanted it for herself.
A New Normal and a Speedier Recovery
Mendelssohn’s second transplant had less problems and she recovered far more quickly, despite the fact that it was still challenging.
In less than three weeks—nearly half the time it had taken following her initial surgery—she was discharged from the hospital.
She didn’t have to retrain her gait or start from scratch with every movement this time.
Her spirit was stronger and her body reacted faster.
Her life did not, however, revert to its previous state.
After returning to the San Francisco Bay Area, she planned to complete her undergraduate education nearby.
She was no longer allowed to skydive, swim with sharks, or perform dangerous acts due to stricter medical constraints.
To Mendelssohn, they were fantasies she had secretly carried, even though they could appear insignificant to others.
In her own way, she accepted such limitations.
“I guess I’ll have to settle for virtual reality or something,” she said.
Actually, she was still getting used to a body she would never be able to completely trust and to a future in which her illness would always be a part of it.
She didn’t focus on her limitations, though.
Her goal was to live with her condition, not in spite of it.
Beyond Just Surviving
Mendelssohn does not consider herself exceptional.
She sees herself as merely a young lady trying to make the most of her circumstances.
However, the decisions she’s made and the struggles she’s encountered point to something more profound.
She has managed an illness for which there is no known cure, survived two liver transplants, and undergone uncertain treatments.
Mendelssohn’s life is not determined by autoimmune hepatitis, even if it may never go away.
She has adjusted to every setback.
She has allowed hope with every diagnosis.
She lives with a strong grasp on the things she can still manage, but more significantly, she is aware of her limitations.
As she puts it, she’s “just a normal gal.”
This kind of situation teaches you how to handle it correctly.
You learn how to use your hand.
And she has done precisely that.
