One Patient's Perspective

I had the honor of giving a talk at the UCI Summer PreMed program that I attended last summer.  Check out my speech!

One Patient’s Perspective:

My Journey Through the Ups and Downs of Chronic Illness and What I’ve Learned Along The Way

When I say the words “chronic illness” what are some things that come to your mind?  What you probably didn’t picture is someone like me.  At first glance, I don’t look sick.  Actually, even after having a conversation with me, you probably still wouldn’t conclude that I am chronically ill. I do a very good job at hiding my illness from the world.  And maybe that is one of the reasons why society often doesn’t know how to treat those of us living with a chronic illness, because of how hard we work to hide our suffering.   There is a lot of stigma surrounding chronic and invisible illnesses, but that is just because we, the patients, often have no voice.

If you couldn't already tell, I am not a typical 17 year old.  I have always been very mature and wise for my age, or so I’ve been told.  I got most of that wisdom and maturity from losing my mom to stage iv breast cancer when I was only 8 years old.   The adversity that I’ve lived through is what makes my unique voice one that I am honored to share with you all today. So let’s take a step back and re travel my journey, and learn just how I got to where I am today.  

I guess one would call my asthma diagnosis the beginning of my story.  At 13, during the summer before I started 8th grade, I was diagnosed with asthma.  This came as a huge shock to me and everyone around me because I was and had been super active my whole life.  I was always playing sports and was competitive rock climbing at the time of my diagnosis.

Following my diagnosis, my asthma went from bad to worse very quickly.  I was put on inhaled corticosteroids and soon became run down with symptoms 24/7.   I am pleased to say that my asthma is fairly controlled at the moment, but it has not always been that way.  I have had my fair share of ER visits and rounds of oral steroids… let’s just say I know why Prednisone gives people “roid rage”, like my family has learned, when Mara is on steroids best stay away and make sure that Krispy Kreme does not run out of glazed chocolate cake donuts.  Yes, I did yell and I mean yell at the Krispy Kreme employee when she told me they did not have any of my favorite donuts left.  

Asthma has also brought a lot of positivity and perspective into my life.  I have grown close to my pulmonologist and she has seen me through the best and worst of times over the past 4 and a half years.  I had the privilege of participating in a NIH-sponsored research study led by my doctor and a research team, here at UCI.  I learned so much and had the honor of doing my part to help advance medicine that summer.  I credit that summer to sparking my interest in medicine and medical research.   If my asthma has taught me one thing it is that every new challenge placed in front of you can seem insurmountable at the time, but with perseverance and strength, that challenge will soon be just another blip on your radar.  

The next part of my story takes me down a darker path, one that frankly still has effects on my health today.  On March 17th, 2016, I was diagnosed with Latent TB while onboarding as a volunteer at CHOC Children’s.  I had thought that I had experienced it all as patient.  Boy, was I in for the ride of my life.   Something that was supposed to be no big deal, frankly turned into a large nightmare.

Following my diagnosis, I started the standard prophylactic protocol of 9 months of daily antibiotics. Soon thereafter I started battling side effects like: chronic and debilitating nausea, no appetite, a constant low-grade fever, and weight loss of nearly 20 pounds.   As you can imagine, I felt backed into a corner because I knew the severity of the situation, but how could I continue to take medication that was slowly killing me from the inside out for a disease that I wasn’t ACTUALLY sick with?

My infectious disease doctor decided that the best regimen for me would be one that involved large weekly observed doses of both INH and RPT.   This treatment was far from easy and soon showed to be the struggle of my life.  These medications wrecked complete havoc on my body.  I developed gastroparesis - a gastric motility disorder believed to be secondary to the antibiotics.  My asthma became uncontrollable due to significant drug interactions, which led to a chronic cough and a sharp drop in my lung function.  However, through all the tears, frustration and being sick and tired of being sick and tired, I triumphantly finished my treatment on November 16th, 2016.  If I learned one thing from my Latent TB treatment it is that if you don’t split the 300 mg INH pills, you will gag.  What I actually learned was how much we rely on our physicians to be our friends and a shoulder to cry on in the most trying of times.  I relied on my doctors for much more than medical advice when it got to a point where there was nothing medical they could do for me.  Some days all I needed was a hug and a pat on the back and assurance that I was doing my best.  So remember, when there is nothing you can do medically to help a patient, a hug or some genuine words of encouragement go a long way.

 In January, a couple months after I had finished TB treatment, I was finally diagnosed with Postural Orthostatic Tachycardia Syndrome.  And I say finally, because it was truly a long time coming and it became clear that this was the missing puzzle piece we were looking for all along.   My constant medical curiosity led me to look up at condition that a distant friend had, not ever expecting what I would find.  The symptoms listed for POTS fit my life to a tee and I was completely shocked and didn’t want to believe at first that I had just diagnosed myself.  I got in to see a POTS specialist and pediatric cardiologist at CHOC, who was able to confirm fairly quickly that I did indeed have POTS.

POTS is a form of dysautonomia - or autonomic nervous system dysfunction.  Symptoms like dizziness and fainting upon standing, chronic fatigue, brain fog, pounding headaches, blurred vision and GI discomfort became my day to day.  Sticking true to the name - POTS primarily causes my HR to spike when I simply stand up or change postures which sends my body into a full out fight or flight response to simply get the blood to my brain quick enough.  

Sadly, my treatment is just as complicated as understanding POTS.  Since there is no way to fix or even help autonomic dysfunction, the only way to help me is by symptom management.   After trying many medications and lifestyle adjustments to no relief, my doctor suggested that I try an IV saline infusion.  IV saline is used to increase blood volume and hydration, as POTS patients typically suffer from hypovolemia, or low blood volume.  Having a low blood volume is what partially leads to the inability of the heart to pump blood to the brain fast enough upon standing. After my first infusion, I felt as though somebody had dusted off the cobwebs and turned a light on in my brain.  For the first time in months, I was able to sit up at my desk and complete hours of schoolwork.   I had enough energy to walk around my house and the strength to stand up, simple things that were nearly impossible just hours and days earlier.   I was able to exercise and start to get back into my two favorite hobbies: rock climbing and cycling. These infusions gave me my life back, and we don’t see them going anywhere anytime soon.  

My hope is that by sharing my story as a chronically ill teenage patient, I am giving a voice to others out there like me who’ve been silenced by their circumstances.   I would not be thriving like I am today without all the compassionate care I have received over the years.  However, it  did take me many years to establish the amazing care team I have today.

According to Dysautonomia International, the average POTS patients fights 4 years for a diagnosis.  I, like many other teenage patients struggling with symptoms of an invisible illness, did not get the initial care and respect I deserved when first coming forward with symptoms of POTS.  I feel like my POTS could have and should have been caught sooner, if I had just been listened too.  I was told that: “it was just in my head”, “it was just anxiety”, “it was just because I was a teenage girl”.  After feeling exhausted and defeated that I wasn’t being heard or being taken seriously, I gave up my fight for a diagnosis. I even tried telling myself that my symptoms weren’t real, but I could not silence my body for long.  I was truly sick and it was mainly thanks to how in tune I am with my body that made me take matters into my own hands.  And thank god I did, because there is no telling how long or if I would have ever gotten diagnosed.  

 Just because our symptoms are below the surface, and do not show up in blood tests, doesn’t mean we should live in silence and fight years for a diagnosis, or for a doctor to finally listen.  

On Monday, my team and I decided to take my POTS treatment one step further.  I had a port-a-cath placed to make my weekly infusions less stressful.  Spending 4 hours a week at the CHOC OPI with a peripheral IV is not what is best for me in the long term.  Heck, I’m already starting to look like a human pin cushion!  Placing my port was one of the biggest medical choices I have ever made.  Even though I had the support of my dad and my physicians, it really came down to what I was comfortable with.  Would I be willing to go through an uncomfortable procedure with an uncomfortable recovery in order to carry out my weekly infusions with ease?  After lots of thinking and discussing, my answer was yes.  I was willing to suffer in the short term for greater independence in the long term.  I took both the clinical information that was given to me by my doctor’s and information that I had gathered from other POTS patients, and was able to make a fully-informed decision.   I worked WITH my team to, in the end, help create an outcome that I was comfortable with.

That story bridges into the last point I want to make.    When you are fortunate enough to have a care team full of physicians that respect you and work WITH you, you are able to feel in control of your health.  And in my case where my body has been betraying me for years, feeling like I am in control of my care and where it will go next is the most re-assuring feeling.  I have finally surrounded myself with a group of physicians that advocate on my behalf just as much as I advocate for myself.

I invite you to carry my story with you through wherever life may take you.   I want to say that my story is not all that unique.  So remember one day, I may be YOUR patient.