Hi all! During my last trip down to Monterrey I was interviewed, along with my mom and doctors Cantu, Barrientos and Dr. Rainbow by El Norte/Sierra Madre newspaper! The article was published today and I wanted to share it with you all.
Very special thanks and much gratitude to reporter Regulo Cantu, for listening my story and and helping me share my miracle with the people of Monterrey. You did a great job!
*English translation below :)
Monterrey Doctors successfully treat a young American woman
who was about to die from an infection caused by the bite of a tick and that
led to Reflex Sympathetic Dystrophy, a rare, painful neurologic disease, that could
only be treated with this life-saving experimental treatment in Monterrey.
Jessica Stevens's story is one of hope and pride.
Talk about the fortitude of a young woman who endured two medically
induced ketamine comas and her incredible parents who, despite the darkest
times, never lost faith and continued to seek a solution for the strange
illness that afflicted their daughter.
On the other hand, a success for Medicine in Monterrey, the
only place in the world that has successfully treated patients with Reflex
Sympathetic Dystrophy using this experimental treatment, thanks to the team led
by anesthesiologist Fernando Cantu.
While visiting the city for further treatment, Jessica sat
down with us to talk about her miracle that has happened and who made it
possible.
“Something rarely seen”
Jessica Stevens was a perfectly normal teenager. She lived
with her parents in New York
until she was 16 years old.
However, during the next nine years of her life, now 25, her
strength and will to live would be put to the test every day.
In 2003, at the end of the school year, Jessica went away to
a summer camp where she was bitten by a tick on the back of her right leg.
After that, her life changed.
"At first my leg just felt warm, with some itching, but
soon I started to feel very sick with fevers after returning from the camp.
Something was not right. I had severe headaches and stomachaches, and no doctor
could diagnose what was wrong, as the disease continued to progress they said that
maybe it was the flu or mononucleosis. It took seven months to finally diagnose
me," recalled the young woman.
As the disease worsened, she began to have painful skin lesions
and pain throughout her body, to the extent that even wearing clothing became very
painful to her.
"I couldn’t be touched, I couldn’t move, I was stuck in
one position in bed and eventually my whole body was in burning pain, as if
someone had poured gasoline on me and lit a match… I was on fire and I could
not escape. Even a small breeze was very painful.”
Jessica notes that despite this, her mother, Sarah Stevens, never
gave up. She took her to various universities and hospitals throughout the United
States, searching for someone who could help
her daughter.
The doctors who saw her said they had never seen anything
like it and therefore did not know how to treat it. Some doctors suggested
putting Jessica into a hospice and making her comfortable. They said in this
condition, she was not expected to live more than a month.
"It was a terrible time to hear all of that; I just
wanted to find someone to say: 'I have seen this disease, and this is how we
can fix it.'"
But that didn’t happen. Until finally, they found a doctor,
who identified the disease: Reflex Sympathetic Dystrophy (Reflex Sympathetic
Dystrophy), painful neurologic disease that can be triggered by any sort of
injury or illness, after which the brain malfunctions, sending constant pain
signals throughout the body, essentially, shutting it down.
Jessica and her parents were told that her last hope for
survival was an experimental treatment in Monterrey,
if they wanted to try it.
They agreed, at that point they had nothing to lose.
“She came here very bad”
Here in the city, Fernando Cantu, assisted by Luis
Barrientos, both anesthesiologists, had already treated 22 people who had
suffered RSD like Jessica. Interestingly, most were foreign, from the U.S.,
UK, Canada,
Switzerland and
New Zealand.
They base their treatment in a drug called ketamine.
"Ketamine is a general anesthetic, but we administer it
in very large doses to induce patients into a coma for five days," said
Cantu.
The Ketamine coma works similarly to shutting down and
re-starting a computer, after this period, the patient wakes up and there is a
'reset' of pain receptors in the brain, Ketamine is a potent antagonist of the receptors that play an important role in
'Reflex Sympathetic Dystrophy’.
It is not approved in the United
States to use this drug, in these doses, for
this type of disease. Dr. Fernando Cantu, along with Dr. Luis Barrientos spent
five years doing the ketamine coma study.
"It is a study. We can not say that it is a treatment,
because there is no proof that it really works as such."
By the time Jessica arrived, Drs. Cantu and Barrientos had
already been conducting the Ketamine Coma study for two years.
"Jessica came here in very critical condition. She had
lived for five years in a bed, within four walls, she could not move, she could
not wear clothes, she arrived wearing dark glasses because the light bothered her,
she wore noise blocking earphones because she could not tolerate any sound
without seizures, we could not touch her, she practically had not eaten in
three years and was being fed intravenously for years before she came. Additionally,
the disease had progressed to affecting her viscerally, her internal organs”
Says Cantu.
Luis Barrientos remembers how bad it was.
"The touch of the sheet bothered her, and most
impressive thing was seeing the extreme weight loss she had, in addition, the
illness caused hundreds of ulcers on her arms and she could not move her legs
at all. At that moment I thought that of the 22 cases we had seen so far, hers
was by far the most serious. "
Arriving to Monterrey
in August 2009, Jessica was not very hopeful, but felt she had nothing to lose.
“I was in so much pain, that the thought of undergoing a
coma for five days didn’t bother me.”
"I know this is terrible to say, but honestly, at that
time I just wanted to die, I could not imagine another day waking up feeling
like I was on fire, I could not eat, I could not even hear sounds. I was by
myself, in my room, in agony, all of the time. What type of life is that? At
that point I really had nothing to lose, "said Jessica.
Her mother remembers what the doctors told her after seeing
her daughter for the first time. “They told me Jessica was in very bad
condition, and they asked me if I was sure that I would want to put Jessica through
the coma, because they didn’t think she would survive it.”
"I told them she did not have a life and this was our
last hope, and that if she died, it was God’s will, and so we decided to
proceed." said her mother.
Jessica awoke five days later, in better shape.
"One step forward ... 20 steps backwards"
However, upon awaking from the coma, Jessica had amnesia.
She did not recognize her mother, did not know why she was in Mexico
and didn’t know what was wrong with her. She didn’t remember anything from her
life at all.
"Those were definitely some of the darkest moments. For
almost a month I didn’t recognize my own mother. I was so confused, especially
because everyone around me spoke a language that was not mine!"
Finally, she recognized her Mom and began to experience slight
improvements.
But not for long. After suffering another infection, her
lesions re-emerged and she became paralyzed once again.
"The saying is always “one step forward and two steps
back”, but this felt like one step forward… and twenty steps back. At this
point I did not want to fight anymore. I told my mother to turn off everything—all
of the machines and medications that were keeping me alive. I felt like I was
the one person God had forgotten about."
Sarah remembers a particular night when Jessica was very
sick, she called and spoke with her husband and he raised the possibility that
it was time to stop treatment. But to Sarah, that was not an option. Seconds
later she told her husband, as long as she lived, she would fight to save
Jessica’s life.
Months later, Jessica was worse than she was since first
arriving to Monterrey and she
underwent a second coma.
Fernando Cantu says the more years a patient has RSD, the
harder the fight is to treat it.
"The expectations (of improvement) for Jessica were
poor. Everything was against her. She was at high risk because of the
malnutrition, her body being completely overrun by the disease. The situation
was serious, difficult, but I had no choice.”
The second Ketamine coma, in August 2010, became the turning
point, after which things finally started to improve.
"Obviously afterwards, she had to receive continued
infusions of booster doses of ketamine, and begin to have rehabilitation, and
desensitization. We also started a nutrition rehabilitation program for her and
she began gradually recovering more and more weight, regaining strength and
finally started moving forward. But it was a difficult road to that point.”
“Not on my watch”
Jessica spent 16 months in Hospital San José, and slowly
began to regain her strength. Finally, the time came when she was strong enough
to travel and return to her parents' house, in Florida,
although with frequent returns to Monterrey
to continue her recovery under her doctor's supervision.
Once back home, her story began to spread, she appeared on
TV in her country and even caught the eye of the presidential couple Barack and
Michelle Obama, who came to greet her.
"I feel very happy because it was a hard job every day,
for nearly two years be fighting the dystrophy and infectious processes and I
definitely feel very happy to see Jessica now doing so well, she is regaining
parts of her life, and she is now able to have the social and personal life these
patients all aspire to have,” explains Fernando Cantu.
His partner, Luis Barrientos, sized the scope of this
achievement.
"From a medical point of view is an important
achievement because, as I tell Fernando, nowhere else in the world offers this
treatment and Fernando Cantu is the head of all this. Monterrey
is now a world reference in these complex cases. "
“They are both truly my heroes, my angels… but there are
other heroes in this case” as Jessica turns to her mother:
"She never gave up on me. I remember that moment when
things were really bad and she talked to my dad in Florida
and told him that I was in critical condition, and I needed extra prayers that
night. My father told my mom that I had suffered long enough, and the doctors
had done all that they could do for me. Maybe, now it was time to stop
treatments and let me go. My mom screamed: "are you kidding '?, not on my
watch!" (' are you kidding?, not while I'm here! '). And hung up."
Now
Dr. Fernando Cantu continues to work on the study of the use
of ketamine to fight Reflex Sympathetic Dystrophy, along with Luis Barrientos
and a team of specialists in Monterrey.
Cantu is an anesthesiologist specializing in Pain Medicine and Barrientos is an
anesthesiologist specializing in critical care. Both are proudly from Monterrey.
Currently, Jessica lives with her parents, Sarah and
David, and two sisters Katherine and Michelle, in Naples,
Florida, overlooking the Gulf of
Mexico. She is in physical therapy and returns frequently to Monterrey
for treatment. Mind you, when she fully recovers, she has plans to return here
to complete her medical studies, that she has already begun online. She wants
to dedicate her life to researching the disease that she has suffered, and
helping others going through it.
Jessica says that when she's not in Monterrey,
the thing she misses most about the city are its mountains.
Ah! And she roots for the Tigres!
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