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In putting together my story to become a member of The Walking Gallery, I started thinking about all the people who have helped me out since I got sick. Maybe they helped me out physically, maybe emotionally. All I know is that all of these people were there for me. Most of them were there for me multiple times. Some stayed up with me all night. Some pushed me to get help. Some listened to me complain, cry, and laugh. And I know that without this cast, I wouldn't be who I am today.

So, everyone, thanks -- you prove that the heart of life is good.

 

 

The Home Fries

 

The people who understand where I come from. It’d been years, yet when I got sick, they called, sent flowers, and visited. They don’t pick me up off the ground, but they’re always only a phone call away.

My Girls1. The Sister, 2. The Mother

My Boys3. The Father 4. The Brother 5. Becky, 6. Bissie, 7. Jessie, 8. Ryan

 

The Cal Kids

suzie

9. Suzie

From the beginning of college through the present, no matter what the issue is, they listen to me, laugh with me, and pick me up when I fall.

viv matt

10. Stephanie, 11. Vivian, 12. Matt

Or they send their parents, or their boyfriend, or their boyfriend’s friend. Basically they’re hyphy rockstars who stood by me before I got sick, stood by me when I got sick, and stand by me to this day.

Sonja Nayeli13. Sonja (14. Tal), 15. Nayeli

Amanda

16. Amanda

havah steph

17. Havah (18. Jason), 19. Stephanie,

AGO ADX20. Stephanie, 21. Carrie, 22. Laura, 23. Arri, 24. Susan, 25. Laurelei, 26. Erin, 27. Carissa, 28. Amanda, 29, Carla, 30. Sarah, 31. Andrea, 32. Emma, 33. Peter, 34. Dave, 35. Jared, 36. Mark, 37. Bryson

At Cal, it’s hard to have real relationships with your professors, your GSIs, your classmates. You’re one in 500 students. But when you fall over, these barriers somehow disappear. My bioethics professor offered to be my medical advocate and call my parents. My social psych professor took me to the student health center in a police car. My GSIs took me home and didn’t freak out too much when I got pulled out of their classes by EMTs. My classmates told me their personal stories, walked me home, and ran the interference required to keep me out of the hospital. Then I worked at a homeless resource center, and, of course, I had my own contingent of the tribe.

gorcey

38. Max, 39. Lev, 40. Ryan, 41. Ben, 42. Joe, 43. Andi, 44. Neil, 45. Steven, 46. Eric, 47. Emilie, 48. Chad, 49. David, 50. David, 51. Diva, 52. Robb, 53. Dylan, 54. Olivia, 55. Kevin, 56. Kristen

 

The Georgetown Crew

I know I owe my masters degree to my cohort at GU - they ensured that I graduated with some cognitive surplus intact. They stole a wheelchair (we returned it... eventually...), drove me home, tucked me into bed, picked me up in weird places, took me to the hospital and waited for hours, staged an intervention, rescued me from water, were my chauffeurs, and caught me when I fell.

Dantana

57. Karen, 58. Veronica, 59. Erin, 60. Dantana, 61. Zach, 62. Veronica, 63. Ashley, 64. Matt, 65. Chris, 66. Matt, 67. Anthony, 68. Betelle, 69. Elliott, 70. Hooman, 71. Jennifer, 72. Kyle, 73. Laura, 74. Maria, 75. Sarah, 76. Stephanie, 77. Charlotte, 78. Haymi, 79. Heather, 80. James, 81. Alice, 82. Alex, 83. Dr. C, 84. Dr. H, 85. Amy, 86. Miriam, 87. Michelle

Phil

88. Phil

ekat
89. Ekat

 

The Feds

For a crew that wears suits all the time, they’re surprisingly protective. From the ONC to HRSA to the FDA, these people were amazing.

90. Wil, 91. Farzad, 92. Lanre, 93. Sachin, 94. Andrea, 95. Sameer, 96. Yael, 97. Marty, 98. Miryam, 99. Robyn, 100. Ian, 101. Mike, 102. Rose, 103. Mary Beth, 104. Georgie, 105. Lori, 106. Jim, 107. Jill, 108. James, 109. Adam, 110. Damon, 111. Aman, 112. Alina, 113. Alon, 114. Mary, 115. Doris, 116. Amy, 117. Gary, 118. Sasha

hhs

High Fives

High Fives

119. Alicia

randi120. Randi

The Law Kids

I was scared that when Amanda left and I wasn’t with the GU kids everyday I’d be alone. That I wouldn't have a person anymore. Nothing could be further from the truth. These people adopted me into their family and are there for me as if I had always been a member of the crowd. Even though I’m not an attorney.

121. Brad, 122. Marie, 123. Gabe, 124. Shaun, 125. Michelle, 126. Sam, 127. Natalie, 128. Laura, 129. Navin, 130. Kathleen

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The Walking Gallery (and Twitterati)

ted regina131. Regina, 132. Ted,
These people gave me a voice to speak out about being a patient. They helped me discover telling your story is one of the most empowering things you can do.

Whitney133. Whitney (and 134. Jake)

Rebecca135. Rebecca
gallery 136. Nikolai, 137. Wen, 138. Tiffany 139. Lisa, 140. Matthew, 141. Fred, 142. Alan, 143. Gregg, 144. Leonard, 145. Alan, 146. Amy, 147. Brian, 148. Diana, 149. Kait, 150. Greg, 151. Christine

 

The Entrepreneurs

And we have all the technophiles.Some are health, some are not. All want to make the world a better place.

152. Katie, 153. Dhruva, 154. Dave, 155. Marco, 156. Kyle,157. Adam, 158. Henry, 159. Jamie, 160. Michael, 161. Andre, 162. Polina, 163. Anish, 164. Adam, 165. Lygeia, 166. Raph,

Marvin167. Stephanie, 168. Marvin

 

The Alturists

And last, but certainly not least, we have all the people who took me in and really had no idea what they were getting into. I can never thank you enough for all the love and care you all have shown me.

Donna and Dennis

 

169. Donna, 170. Dennis

 Konstantin171. Konstantin

 Leonard172. Leonard
Kelli171. Kelli

What's wrong with this picture?

One of these things is not like the other.

Hint: The IV isn't supposed to be there.

So this morning I had a loop recorder put in my chest to watch my heart rate. The procedure went well.
I was super impressed by the pre-op team. One nurse in particular was really good- she was all about people checking my ID band and made sure the antibiotics got started on time. The PACU, not so much. Somehow the IV never got removed before I was discharged. They called 2 hours later to see if the IV was still in my arm. It is.

If I were to ask the why questions:

- why was the IV left in?
Because the patient was dressed and we didn't see it
- why was the pt dressed?
Because they were d/c quickly
- why was the pt d/c quickly?
Because they were freaking out
- why was the pt freaking out?
Because the drugs used weren't right and they were alone

This ain't so bad.

This ain't so bad.

Drugs:

- why weren't the drugs not right?
Because we didn't know the last time the pt had surgery she got anxious
- why didnt we know that?
because the patient didn't realize there was a correlation.
- Why didn't we fix the drugs?
Because their oxygen was low
-why was the oxygen low?
Because the drugs weren't right
-why didn't we fix the drugs?
we cant dc people if we give them more drugs
- why did they have to be dc?
Because they were anxious... And we needed the bed.

Friend:

- why wasn't the friend there?
Because we didn't call them
- why didn't we call them?
We didn't know we had to
- why didn't we know we had to
We didn't notice the note on the chart

Pretty sure a checklist would have fixed this problem.

“Are your eyes closed?”
“No”
“Yes they are. Jess, why do you lie? It scares me when you lie.”
…“Wait, what?”
“You’re going to fall.”

And, like clockwork, I fall, semiconscious to the sidewalk on the corner of Pennsylvania and Constitution.

Somewhere above me someone is concerned. “Is she ok?” “Yes” “No, really, is she ok?” “Yes, she has a heart problem.” “Really? Is she ok?” “Yes, I’ve got this.” “You’re sure?” “I’m sure.” Yes, lady, he has this. He always has it. No matter how embarrassed he is. No matter how inconvenienced he is. He has this.

So, what’s wrong with me? Postural Orthostatic Tachycardia Syndrome. POTS. What’s that mean? It means that sometimes when I stand, my heart rate doubles, my blood pressure drops, and I pass out.

Apparently most people grow out of this. But I’m not most people. I’m 25. I’ve had POTS since, if I’m honest, I was about 9. When I finally got it diagnosed at 21, my condition became legitimate. I’ve seen the statistics; the odds that this goes away after fifteen years are almost nonexistent. I won’t die, but sometimes I’ll want to. As my cardiologist put it, “I’m [his] problem.” I’m the one he can’t fix. But that makes sense. I have an idiopathic condition. It lies somewhere between the heart, autonomic nervous system, and mind. It’s a veritable no-mans land of drugs and specialists where there’s no cure and very little understanding.

During my last “bad” episode, my friend called to check up on me: “Jess, if they make you go to the hospital I’m not going to fight them. Plus, isn’t that what you do?” No, that isn’t what I do. Yes, I have a degree in Health Systems Administration. Yes, I’m an “expert” on Health Information Technology. But that doesn’t change the fact that I’m a horrible patient. That I carry my medical records around with me in a hot pink binder. That I hate hospitals.

And I always have. If I had my way, I’d keep everyone out of them. It’s why I “do” health IT. See, I’ve been in lots of hospitals - from community hospitals to major academic medical centers. They're filled with well intentioned, highly trained, people. Unfortunately the mechanisms these care facilities have put in place don't actually connect the people within, let alone between, instances of care.

I used to think I’d trade anything for perfect health. Now, I don’t know if I would. See, I’m happy. I have people. I have a future. And I know that my life has been influenced by my sickness. Without it, I wouldn’t understand. I wouldn’t understand powerlessness. I wouldn’t understand frustration. I wouldn’t understand that the system is broken.

How broken?  During one stay, despite my credentials, I ended up semiconscious at the bottom of a flight of stairs, in tears, begging to go home. See, in the moments I’m a patient, I can’t manage my life. And, despite their credentials (on this visit: a MD/MBA, a MPH, and three MHSAs), my friends can’t manage it for me. Can you imagine someone without this support system navigating the bureaucracy that is healthcare? I don't know how they do it.

Luckily this is only one side of my coin— I’m healthy enough to have a day job advising the people that chart the course of American health policy. The philosopher Herodotus got it right: “the greater the man, the greater the misfortune,” or, as our friend Peter Parker put it “with great power comes great responsibility.” I know that the weaker I get, the stronger I become. The weaker I get, the more I understand that my care continuum isn't the only one with flaws. The weaker I get, the more I understand that together, we can change our health system. That the whole is greater than the sum of its parts.

Back under the glow of the US Capitol, I hear my friend:

“Jess, you’re broken. But I’m broken too. We’re all broken.”
“You think that together we make a whole person?”
“Yeah, Jess, together we’re a whole person.”

And with that, he picks me up. And carries me home.

http://i2.wp.com/mw2.google.com/mw-panoramio/photos/medium/56925708.jpg?w=630

This is the story behind my Walking Gallery Jacket: "Is She Alright"

8197658371_d50573660a

EMP_Wil

Social psychology shows that if you say thanks you're happier. Recently, Georgetown asked me to write a piece on my mentor-mentee relationship during grad school. You might know that I was an Innovation Fellow at the Office of the National Coordinator in 2010. While I was there, Special Assistant Wil Yu became my "Health IT and Innovation 101" guide. I definitely owe my health IT know-how to Wil and am certain that working with him changed the trajectory of my career (for the good!!!). Here's what I submitted to GU, it's a puff piece, but I think the gratitude comes through (their slightly modified post can be found here) (more…)

2009 Graduate Scholar (Second Runner Up)

Unlike most twenty-three-year-old sorority alumnae, I receive my monthly subscription of Cosmo with a side of insurance rejections: such is the life of a coed who lost the genetic lottery. Thankfully, I earned an undergraduate degree in Health Administration and specialize in reminding health care organizations of their contractual obligations. Unfortunately the majority of Americans have not had this training while the red tape surrounding the insurance system is dense and misleading (1). But that’s to be expected; even the laws put in place to protect patient rights are incomprehensible. A Journal of General Internal Medicine report found that legislation set to protect patient rights is comprehensible to people with a reading level equivalent to that of an Associate Degree (2). To put this in perspective, approximately 70% of the United States population over the age of 25 can’t understand the laws which protect their health care rights (3). This ambiguity has created a market of confused individuals who are easily melded into padding the bottom line for both insurance companies and for-profit health care advocates.

According to the California Nurses Association, 1 in 5 claims are rejected by private insurance companies each year (4). These rejections can occur before or after care is received and come in two classes: quantitative and subjective. The first genre consists of clerical errors and miscoding issues, both of which are easily corrected to the subscribers benefit (so long as the subscriber catches the error, knows their benefits, and appeals the rejection in a timely manner).  The second groups of denials are difficult to negotiate as they result the insurance companies definition of preexisting conditions, medical necessity and experimental procedures (5).

Comedian Stephen Colbert illustrated the satirical nature of this licensure in his October 29, 2009 introduction in which he asked “What qualifies as a preexisting condition? … If you have to ask, you probably have one! (6)” Take for example Stephanie, a 24 year old from Oakland, California, who opted into a single-payer insurance policy while she was studying for her MCATs. She went to the doctor for an annual exam and was diagnosed with bronchitis. This diagnosis led her insurance company to do a five-year review of her medical records in which they found evidence of a past chest infection, providing them with grounds to refuse payment for her care. She never thought that her former chest cold could be a preexisting condition, yet due to her insurance company’s interpretation, she was forced to pay out of pocket (7). Obviously the insurance industry has to stack the deck in their favor; they are for-profit companies and deserve to be compensated for their sizeable gamble on individuals, but the high profits which result from rising premiums and unclear coverage denials is unethical (8).

This no-man’s land between insurers and individuals has led to a job market in patient advocacy. Many advocacy groups are either non-profit or governmental agencies; indeed, most states have patient advocacy bureaus to help their residents navigate the difficult legislature governing their care (9). Unfortunately these bureaus, like most social service sectors, are overworked and underpaid, forcing states to mandate who qualifies for advocacy (10). This urges patients with financial means to employ private, for-profit advocacy agencies to help them navigate the intricacies of the health care system, adding additional cost to their health care. Furthermore, the for-profit nature of these companies caters to healthy individuals, and some refuse to work for people with preexisting conditions, leaving those who desperately need support without recourse (11).

Einstein once said “make everything as simple as it has to be, but no simpler.” If this principle governed the success of Time’s “Person of the Century,” perhaps we should consider applying his wisdom to our current health care crisis (13). Simplicity is indeed the key to our success. Currently, health care reform bills have provisions to subsidize and reward the utilization of electronic medical records. Unfortunately, these electronic medical records are not currently at a developmental level which would supply security or uniformity. Yet these systems have great promise, indeed, if they are streamlined, continuity and accuracy of care would be vastly improved (14). A standardized record system would incite uniform regulations across insurers, helping to hold the insurance system accountable in a laissez-faire manner which increases its political viability. Furthermore, the clarity this system provides would help subscribers to understand the reasoning behind decisions which were formerly illogical. Unfortunately this goal is several years in the offing and we cannot wait to provide culturally relevant data to patients.

I recently attended a Comparative Effectiveness Research seminar in which Dr. Robert Epstein was panel member; I recognized his name, but couldn’t immediately place him (12). Halfway through the panel, it hit me - Epstein’s signature is affixed to letters I receive from Medco Health Solutions when my prescription drug coverage changes. In my world, Epstein is the prescription-drug-coverage-devil. But as I sat listening to his speech on personalized medicine, his congenial nature and “carpe diem” philosophy made me realize that the man behind the signature is human and truly cares for his subscriber’s futures.

Insurance companies are made up of educated people who, like Epstein, want what’s best for their subscribers. Admittedly, the more effective treatments are, the less they have to pay in the future. Yet these companies are woefully unsuccessful and demonized by the lay public in their attempts at efficiency. Likewise, the current push for health care reform is misunderstood and chaos abounds. If you want proof that a number of Americans do not understand the goals of health reform, look no further than “end of life counseling” being touted as “death panels.” Something has been lost in translation. If our goal is efficient, culturally competent care, the information delivery system must be clarified and translated via an appropriate advocate.

Note: For this piece I was recognized in NCHE's Annual Scholarship competition.

NCHE Year One

Works Cited:

1. Kaiser Family Foundation. Confusing Insurance Jargon Prompts Call For Reform. Kaiser Health News. [Online] September 21, 2009. [Cited: October 31, 2009.] http://www.kaiserhealthnews.org/Daily-Reports/2009/September/21/2khnstory.aspx?referrer=search.

2. Gardner, Amanda. Patient's Bill of Rights Too Tough to Read. U.S. News & World Report. [Online] March 27, 2009. [Cited: October 31, 2009.] http://health.usnews.com/articles/health/healthday/2009/03/27/patients-bill-of-rights-too-tough-to-read.html.

3. United States Census Bureau. Educational Attainment: 2000. census.gov. [Online] August 2003. [Cited: October 2009, 30.] http://www.census.gov/prod/2003pubs/c2kbr-24.pdf.

4. California Nurses Association. California's Real Death Panels: Insurers Deny 21% of Claims. National Nurses Organizing Committee. [Online] September 2, 2009. [Cited: October 30, 2009.] http://www.calnurses.org/media-center/press-releases/2009/september/california-s-real-death-panels-insurers-deny-21-of-claims.html.

5. Vogin, Gary. Dealing With Rejection. MedicineNet.com. [Online] WebMD, March 22, 2002. [Cited: October 30, 2009.] http://www.medicinenet.com/script/main/art.asp?articlekey=51313.

6. Wednesday, October 28, 2009. Comedy Central, New York : Stephen Colbert, October 28, 2009.

7. X., Stephanie. Personal Interview. October 2009, 28.

8. FactCheck.org. Insurance Co. Profits: Good, But Not Breaking Records. FactCheck.org. [Online] August 5, 2009. [Cited: October 31, 2009.] http://www.factcheck.org/2009/08/insurance-co-profits-good-but-not-breaking-records/.

9. Patient Advocate Foundation. The National Financial Resources Guidebook for Patients. Patient Advocate Foundation. [Online] [Cited: October 30, 2009.] http://www.patientadvocate.org/report.php.

10. R, S. Personal Interview. June 2009. Mr. R is a CNA employed by Tenderloin Health in their case management and health advocacy departments.

11. HealthCare Advocates, Inc. The Consumer Price Plan. HealthCare Advocates, Inc. [Online] 2009. [Cited: October 31, 2009.] http://www.healthcareadvocates.com/priceplan.html.

12. Personalized Medicine Coalition/National Pharmaceutical Council. Comparative Effectiveness Research and Personalized Medicine: Policy, Science, and Business. Arlington, VA : Personalized Medicine Coalition/National Pharmaceutical Council, October 28, 2009.

13. Golden, Frederic. Person of the Century: Albert Einstein. Time. [Online] Time, Inc. , January 3, 2000. [Cited: October 31, 2009.] http://www.time.com/time/time100/poc/magazine/albert_einstein5a.html.

14. Huslin, Anita. Online Health Data in Remission. The Washington Post. [Online] February 16, 2009. [Cited: October 30, 2009.] http://www.washingtonpost.com/wp-dyn/content/article/2009/02/15/AR2009021501284.html.