Patient story

Katie Tobias

 Creatively disguising the CADD Legacy IV pump gave me the confidence to be Katie as opposed to Katie attached to a machine.

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My name is Katie. I’m 22 years old. In September of 2006 my life changed in ways I would have never thought possible, even in my worst nightmares. I found out I was in the “severe” stage of PH and was “knocking on death’s door.” Ever since then, I have tried using words to describe the intense highs and lows, both physically and emotionally but was never able to do it justice, until right now. You, too, know what it’s like when breathing becomes a luxury...

In high school, things gradually went downhill. When the asthma medications stopped working and my breathing got worse, “it was my fault. I wasn’t taking them the right way.” Since I was being treated for depression at the time, “it was typical of depressed people to not want to get better.” There was no room for debate. I had asthma, end of story.

When I started passing out, the head of neurology at a major teaching hospital said I had epilepsy. His seizure medications didn’t stop me from “unexplainably losing consciousness” at 17 and 18 years old.

I was born with a ventricular septal defect (VSD) and a mild form of secondary PH. The hole decreased in size naturally over time and since that was the supposed cause of the PH, it stood to reason that the PH was no longer an issue. After having a “world-renowned congenital defect specialist” listen to my heart for two minutes and declare I was perfectly happy and healthy, the heart was never suspected. In September 2006, my local cardiologist did a transesophageal echocardiography (TEE) and saw my pulmonary pressures were elevated. He immediately referred me to an out-of-state PH center. In the blink of an eye, “worst case scenario” went from open-heart surgery to possible heart/lung transplant.

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After a right heart catheterization, my pulmonary pressure was 88 and the decision to start IV Remodulin was made before I even woke up. That first week in the hospital was absolute hell. I remember one moment in particular. They were putting a catheter into my neck. The site was numb and I had muscle relaxants but I was 100% aware of everything: I had no future. I barely had a present and my life as I knew it was over. Lying there, I silently begged, pleaded and prayed they would screw up and put me out of my misery.

I can’t even describe what it was like to look in the mirror and see a tube coming out of my chest and a machine attached to my waist. I should be wondering if my hair looks good, rather than how much of an unlovable freak I must look like now. Personally, I’m not sure that is something you can ever be 100% ok with, but I’m much closer to acceptance, learning how to love the “new me” and taking life one step at a time.

I have always loved art: painting, drawing, you name it. But when I first got out of the hospital, I lost everything, including my desire to do so much as pick up a pencil. About a month later, I started working with an art therapist. I had no idea how to express all the intense emotions tearing me to shreds. My therapist took out a piece of paper, drew a big circle on it and simply told me to color. Before I knew it, I was opening up. I was focused more on choosing colored pencils than I was with the words I was using, and somehow those words didn’t hurt quite as much. As the circle was filling up, I was slowly releasing a little bit of that turmoil that inevitably follows this diagnosis. When I finished coloring, I stopped talking, and she didn’t push me any further. The idea is not to think about what you’re drawing, just let it flow, spontaneously. Scribble, color, do anything you want. It will be whatever you need it to be. As simple as this may sound, over time, these circles helped re-ignite the artistic flame inside. (100+ circles, also called mandalas, are now sitting in a binder, which chronicle my first year in treatment.) When you write in a journal, anyone can pick it up and all your thoughts, fears and emotions might as well be up on a billboard for the world to see. But when someone looks at these circles, all they will see are a bunch of scribbles or blotches of color. When you look at it, only you will know what was released with every splatter of paint. It was a gradual way back into the life I had known previously and it was reaffirming the fact that although my life has changed drastically, I haven’t lost everything.

In September of 2007 I had another right heart catheterization and my pressures came down to 44. In February of 2008 I started Revatio, which my friends all had a field day with once they found out it was just another name for Viagra. All joking aside, though, I would not be here today if it weren’t for them and for my family. They’ve seen me through the darkest times of my life and have still managed to make me smile. Recently, I’ve gotten into mixed-media collages, like the “human spirit” one, here. So many different elements combine to make me the person I am today, just as a variety of materials were used to create this piece of artwork. Most of the time, these “elements” create something positive, something beautiful, reflecting the person behind the medical issues that have overshadowed every aspect of my life. It’s been a long and turbulent two and a half years since the PH diagnosis but piece-by-piece, my heart is being rejuvenated.

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Even pieces of shattered glass can be reassembled into something beautiful, representing the full cycle from anger back to peace. At one point I was so angry, I took all the old glass things I could find, threw them in a box and attacked them with a hammer. I got a mirror and framed the edges with this glass using a hot glue gun, and on the mirror I wrote, “Shattered and broken, yet still beautiful and strong.” The shards of glass were painted different colors.

Art has a way of freeing the spirit and bringing peace and tranquility to the soul. It is a non-judgmental form of expression. Everyone can experience the amazing healing qualities that come from making art, whether you consider yourself an artist or not. Discovering a safe and effective way to express myself was like having a burden lifted from my shoulders. The paper became my trusted friend and colors my unspoken language. I now had a way to release everything inside me without worrying about others’ opinions, especially of those who couldn’t possibly understand. In its own way, artwork “speaks” to the artist. It can be comforting, uplifting, or it can simply “be with you” during your time of need, whatever that may be.

In studying "fine arts," you demonstrate learned skills, but with "expressive arts" you tell your story and even inspire those around you. Sweet juice can come from bitter fruit. All of our lives have changed, to say the least. We have all had to "start over" and somehow figure out who we are now, beyond medications, oxygen, IV pumps, and doctor visits. If you've never picked up a paint brush, do so now. Don't feel intimidated or scared. You cannot possibly make a mistake, I promise. Just let it flow and don't criticize anything you create. It’s not the finished product that counts, it’s all about the process of healing through creative expression. The possibilities are endless. After all, "art is in the eye of the beholder."


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.