Fighting pulmonary hypertension: Chelsea's Radiant Smile Foundation

Chelsea Umbach was an extraordinary young woman, killed by a disease you've probably never heard of. Photo: X-ray of a heart damaged by pulmonary hypertension

NATCHITOCHES, La., April 6, 2013 ― I went to my Facebook “friends list” one afternoon to get in touch with someone, just to drop a note and say “hi.” I started scrolling down the list to look for him when a name caught my eye and my hand froze.

Chelsea Umbach.

We were driving across the Navajo nation when our colleague, Dr. Cochran, called with the news. My wife’s voice went soft and she said “oh, dear,” and I knew something was wrong. She told me, and then we were quiet. There wasn’t much to say. 

Chelsea was a graduate of the Louisiana Scholars’ College. As a child she was diagnosed with primary pulmonary hypertension, a rare disease that affects women three times as often as men. It causes high blood pressure in the blood vessels of the heart and lungs, ultimately destroying both organs. It’s incurable, and without a heart and lung transplant, it is always fatal.

Chelsea fought that disease valiantly, for years. She was included in a study for an experimental drug, Tracleer, at the LSU Medical Center. It helped, but when the study ended, LSU could no longer provide it. Her mother was finally able to obtain it from the Swiss manufacturer, Actelion. She took it daily through high school and college, but it wasn’t a cure, and she finally made it onto a transplant list for a new heart and lungs at the University of Alabama in Birmingham.

Chelsea got her transplant in January, 2010. For 16 months she did very well. Then one morning she went into the hospital with pneumonia, and by nightfall she died.

There’s a lot to remember about Chelsea: a message from her with an admiring comment about my daughter; her visit to my office a couple of months before she died, her face radiant, as it so often was; her face tear-streaked, years ago, something I rarely saw but of which, as her professor, I was the cause; Chelsea and her mom at my house, enjoying jalapeno lemonade and asking for the recipe (I ended up giving it to her at least three times ― I had to shake my head at the implied disorganization of her recipe files); Chelsea in my computer apps class, Chelsea in my Texts and Traditions seminar, Chelsea in my Russian lit class — and always a sense of happiness when I saw her name on my class list.

I remember a lot of students (not always by name — is it Ron Heidelberg or Roy? Whichever one I guess, it’s the other), and more than a few I remember with a smile. Not because they were brilliant: Some of my favorites have been hopelessly bad writers and miserable at economics. Not because they were outgoing: Some have been as introspective and quiet as monks. There’s just something about the way they sit, the way they look at you, the odd things they say or write that tell you there’s someone really interesting at home in there, and often someone warm and kind.

Chelsea was nothing if not outgoing, definitely interesting, always warm and kind. I don’t remember at all how she was as a scholar. Probably good, but when all’s said and done, that’s the least important thing about our students. It’s funny; they often think that how they do on papers and exams is all that their professors care about. They think that what they do for their grades is what’s important about education, but it’s not. It’s the least important part of school and of life.

No one misses Chelsea the scholar, Chelsea the mathematician or Chelsea the legal theorist. Those are admirable things to have in your obituary, but if that’s all there is to remember you by, you’ve failed as a human being.

It hurts that Chelsea is gone because she was a joy. She made others happy; she made me happy. She might never have done anything notable in business or academia, and she would still have been a huge success at life. 

We’re all going to die. That’s a much more important thing to remember than how to conjugate Russian verbs or how to launch an IPO. We should remember our mortality as we rush around striving for success. If you stay late at the office to be successful in business, remember, you’re going to die. You’ll be replaced. Whether you’re a janitor or the CEO or the occupant of an endowed chair at Harvard, when you die, you’ll be replaced. Life will go on. The question is, will anyone care that you were ever part of it?

Your kids will; love your kids. Your spouse will; love your spouse. Your parents will; love your parents. Love your friends, love your neighbors, love the incompetent checkout clerk in the express lane at Walmart. That’s how you’ll be remembered, that’s why you’ll be missed. That’s why anyone will care that you were ever alive. 

Chelsea was a memorable young lady. I wish she were still here, but she’s not. I’ll never be the radiant soul that she was, but knowing her made me just a little better, and with luck that’s a gift I will pass on to others, and that they will pass on in turn. If her name is forgotten, that’s a part of her memory that will live. 

She leaves another legacy. Chelsea’s family owns Harry’s Dive Shop in New Orleans, which is hosting a benefit on Sunday, April 7, for the Chelsea’s Radiant Smile Foundation and the LSU Health Sciences Foundation. The purpose is to raise awareness of pulmonary hypertension and ways to control it. The benefit will start at 11:00 and will consist of a walk/run around City Park in New Orleans (registration is $25 per person and includes a t-shirt). It will start at the Peristyle, where Chelsea married Robert Yates, a fellow student at the Scholars’ College, and end at noon. You can sign up online.

If you don’t care to run, a $5 donation will still get you an excellent lunch of pulled pork, jambalaya, chili, cookies and more. There will be a silent auction of restaurant gift certificates, diving equipment, and some of Chelsea’s personal items (her fondness for cross-stitching helped her pass many hours in the hospital). There will also be food and baked goods for sale, with proceeds to go to the foundation.

You can also donate through the LSU Health Foundation online. Where it says “designation,” click for a drop-down menu and select Chelsea’s Radiant Smile.

 

James Picht is the Senior Editor for Communities Politics and teaches economics at the Louisiana Scholars’ College in Natchitoches, La., where he went to take a break from working in Moscow and Washington. But he fell in love with the town and with the professor of Romance languages, so there he stayed. Now he teaches, annoys his children, and makes jalapeno lemonade. He misses Chelsea Umbach. He tweets, hangs out on Facebook, and has a blog he totally neglects at pichtblog.blogspot.com. 

 

 

 


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Jim Picht

James Picht is the Senior Editor for Communities Politics and teaches economics and Russian at the Louisiana Scholars' College in Natchitoches, La. After earning his doctorate in economics, he spent several years working in Moscow and the new independent states of the former Soviet Union for the U.S. government, the Asian Development Bank, and as a private contractor. He returned to Ukraine recently to teach principles of constitutional law and criminal procedure at several Ukrainian law schools for a USAID legal development project. He has been writing at the Communities since 2009.

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