Sixteen-year-old Kyla Jones didn’t just suddenly fall ill. The deterioration of her health was a gradual process, one that took about six months. By the time Kyla suffered a third round of mononucleosis, her family started to wonder, something was going on.
No one panicked. Evidently, 95% of the populace has a dormant version of Epstein Barr, the virus that causes mono. True, it wasn’t common to have it more than once, but it turns out Epstein Barr Virus is prevalent in Kyla’s family – this stuff is always genetic. But even after the anti-virals she took to counter the effects of the mono, her symptoms mushroomed: chest pains, joint point, light-headedness, exhaustion. When Kyla lost 15lbs in two weeks, they contacted specialists to dig a little deeper.
Doctors tested her for Lupus, Chronic Fatigue Syndrome, diabetes, fibromyalgia and Lyme disease. The Lyme showed positive the third time they tested for it. Finally, something to pin the symptoms on.
The relief from discovering Lyme was short lived. Six weeks of intense antibiotics wreaked havoc on Kyla’s stomach and left her weaker and sicker. Her heart pounded and her pulse shot up like a runaway train every time she tried to stand. Wasn’t she supposed to respond to the meds even a little bit? She was soon up to about 30 pills a day to treat all of her symptoms.
With the advent of the Google generation, everybody tried to diagnose Kyla. Who hasn’t been tempted to Google symptoms only to find you might have cancer? For Kyla it was somewhat entertaining when friends popped up with a diagnosis, especially the ones that didn’t match her symptoms. Maybe you have Rickets, someone suggested. Kyla stopped looking to the internet to self-diagnose early on. The internet was too overwhelming, the possibilities all too real.
It took four doctors, six rounds of blood work and over a year of spiraling symptoms to ultimately find a diagnosis. It wasn’t the three-ring binder of test results she brought to Children’s Hospital that gave the doctor the information he needed to figure out what was going on. It was a special blood pressure test. Dr. David Ascher took Kyla’s blood pressure while she was lying down and then he took it again right after she sat up. Sure enough, when she sat up, her heart rate and blood pressure rose significantly. Ascher suggested Kyla might have Postural Orthostatic Tachycardia Syndrome (POTS).
POTS is a disorder of the autonomic nervous system which controls all of our involuntary functions like breathing, blood pressure and heart beat. The part of the nervous system that regulates heart rate and a host of things we take for granted also works to keep the body hydrated in order to build blood volume. Doctors believe that Kyla’s autonomic nervous system was compromised because of the Epstein Barr, the Lyme and all the medications used to treat her conditions.
Kyla became a ghost of the person she was over a year ago. A beautiful young woman who just turned seventeen was now using a cane to get around. Life still went on around her: everyone at school talked about their college of choice, vacations coming up, proms to go to, beaches to explore and what clothes went with what event. But for Kyla the only question was, am I going to graduate this year?
Kyla credits her friends with helping her to face the disease. Up until then she felt emotional detachment and remembers approaching her sickness like she would a new patient with mysterious symptoms. She had been planning on studying pre-med in college so this was the perfect opportunity to practice. But now every aspect of her future was in question.
Her two closest friends said to her, we need to get into your head to help you out. Having depended on denial up until this point, Kyla says this request was no small feat. She collapsed into an onrush of emotion that overcame her. She let out all of the feelings about this unjust horror she had been subjected to, giving in after all this time of pretending otherwise.
Friends and family weren’t a part of the ride, ultimately. Kyla felt moments of acute loneliness as the illness descended into even darker territory. She fell into a bleak depression and distanced herself from most social interactions. Kyla started anti depressants. Who wouldn’t be depressed when you hadn’t had a normal day in 18 months?
Kyla gave up. Emotional outbursts and mood swings gave way to new unpleasant side effects like vomiting and diarrhea. The illness beat its wrath upon Kyla like a storm on a small raft. She says she felt like she completely lost sense of who she was by then. She grieved the death of the self she knew.
Kyla’s story is of mythic proportion. Her journey into darkness parallels a metaphorical death and rebirth that has been told since time immemorial. One of the earliest writings in the world tells the story of Inanna from Sumer who traveled to the land of the dead and miraculously found her way to be among the living again. Each part of her descent was more difficult than the last: through every gate Inanna was forced to surrender another part of her identity.
Like Inanna, the essence of who Kyla once was, dissipated. What remains of the story, and the journey back to the living, is not a Sherlock Holmes mystery to solve with perfect wellness waiting on the other side. Life would never again be as it was before.
The doctors prescribed medications but they weren’t solving the problem. No one could cure her because there is no cure for POTS. After all of the tests, the doctors, the hospital visits and the lost school days, Kyla realized no one was going to do this for her. At this point, her best friend said, make this illness your gift. And Kyla heard the truth in it. Perhaps the best friend was like Erishkigal, the shadowy figure in the underworld who confronted Inanna as the only way out of the darkness.
Kyla says the road to a new life began when she realized she had to be her own advocate. On the internet she found an on-line community. They call themselves Potsies, people who were living with POTS. There she also found a sisterhood. They embraced her and helped Kyla feel less alone. She says the POTs blog, www.potsgrrl.blogspot.com, inspired her self-advocacy. The site was also where Kyla first heard about a treatment called IV saline therapy.
Vanderbilt University, a leading POTS research center, has published studies which reveal that many POTS patients have as much as a 27% blood plasma deficiency. IV saline therapy shows promise because fluid can quickly and directly hydrate the veins leading to the heart, lungs and brain. This way, major organs don’t have to work so hard to function.
Kyla tried IV saline therapy early on with a PICC line, which is a way to infuse fluids through a catheter inserted into the bicep, but the vein they needed collapsed over time. Kyla noticed a difference in how she felt right away, though. The more she read about it, the more she wanted to try it again. Kyla learned that a port surgically inserted into her chest could provide a direct “lifeline” of IV therapy theoretically without hospital visits.
The trouble was Kyla’s doctor approached POTS in a pharmaceutically-based manner. He believed a port would be too extreme. Kyla applauded modern-day medications, but knew from experience that each carried a number of side effects. As she puts it: “There comes a point when you need to evaluate if the pros outweigh the cons (when taking medications), and for me they didn't. I knew saline infusions made me feel better because every time I was in the hospital I walked out feeling amazing. I campaigned for the saline for months and it took a lot of research and determination to convince my parents to get on board with it. Once they realized this was what I wanted and why, they were all in. At a very emotional appointment with the doctor at the Children’s Heart Institute we agreed on a mixture of medications as well as the saline therapy. I have since dropped multiple meds and increased the amount of saline I receive. Literally, within the first five minutes of the infusion I feel more alive. It’s like that first amazing intake of air after you've been underwater for a really long time.”
The saline therapy has been a godsend. She can stand without the head rush and walk without a cane. She currently receives saline three or four times a week in her home with the help of nurse and has now resumed almost all normal activities.
At her cousin’s wedding recently Kyla ran to greet a relative. Her mother, watching, called out to her in tears, “Who are you? Kyla, you are running.” When was the last time she saw her daughter run, much less laugh? Who would have thought something as uncomplicated as saline could jump start her health again?
Kyla’s going to James Madison University this fall. She’s still debating what she’ll study but she’s leaning toward chronic illnesses. She does, after all have an inside scoop on the subject. Her dormitory is located near the health center and she’ll have regular visits by a nurse to take blood pressure and administer the saline. She doesn’t know what the future will bring, but Kyla recognizes this as a gift to stay mindful of the present moment.
Kyla’s statement in her college application couldn’t have said it better: “I found out what life is really about by having my life taken away.”