Aetna Avant-Garde.

When I first started in health IT, I noticed that the people who used Twitter were the cool kids. So, in 2012 I made an egocentric New Year’s resolution to exceed an arbitrarily “cool kid” threshold of 100 Twitter followers. Since I’m a fan of efficiency, I decided that the best way to do this was total automation. I found a tweet scheduling platform and used an excel spreadsheet to schedule all of my tweets for the entire week on Sunday as if I was a company engaged in a massive PR effort. Over the next few months my following barely increased. I had no idea what I was doing wrong; by all accounts, my tweets were perfect - filled with descriptive words, hashtags, and links. When the HIMSS annual conference rolled around, I attended my first tweetup and people went around and introduced themselves and said why they joined Twitter – one person’s comment stuck with me – they joined because they “wanted to be part of the conversation.” Who said this? None other than Wen Dombrowski, @HealthcareWen, last year’s #HIT100 champion.  If people wanted a feed of cool articles they’d just follow Kaiser Health News or Histalk on twitter. The real value add is finding people who think the way you do (or, better yet, think opposite of you). So yes, formulaically my tweets were perfect – but they weren’t interactive. Turns out that interacting is actually what Twitter is about - relationships, not mindless self-promotion.


Ready to join the conversation and need some people to follow? Here’s some of my favs:

In a League of her own: Wen Dombrowski (@healthcarewen)

  1. Feds:
    1. Feds: Steven Posnack (@HealthIT_Policy),  Claudia Williams (@claudiawilliams), Ryan Panchadsaram (@rypan)
    2. Fed Translators: Brian Ahier (@ahier), John Halamka (@jhalamka), Mandi Bishop (@MandiBPro)
    3. ONC Alums: Rebecca Coelius (@RebeccaCoelius), Sherry Reynolds (@cascadia), Ross Martin (@RossMartin, of @Acmimimi fame), Lygeia Ricciardi (@Lygeia), Sachin Jain (@SacJai)
  2. The Technical Side: Erik Pupo (@erikpupo), Keith Boone (@motorcycleguy), Chad Johnson (@ochotex), Mark Silverberg (@skram), Greg Norman (@Raelshark), Leah Vaughn (@HealthPolicyGrp)
  3. Startup Buzz: Startup Health (@StartupHealth), Rock Health (@Rock_Health), Brian Dolan (@mobilehealth).
  4. Straight Shooters:  Matthew Holt (@boltyboy), John Moore (@john_chilmark), Henry Wei (@henryweimd)
  5. Public Health Mavens: Michelle Holshue (@PHNurseMichelle), Whitney Zatzkin (@MsWz), Nina Jolani (@ninajtweets, runs #phtweets chat under @PublicHealthTalks).
  6. Big Data Evangelists:  Aman Bhandari (@ghideas), Fred Trotter (@FredTrotter), John Brownstein (@johnbrownstein).
  7. #TheWalkingGallery: Regina Holliday (@ReginaHolliday), Ted Eytan (@TedEytan), Donna Cryer (@dcpatient), Erin Gilmer (@GilmerHealthLaw), Anna McCollister-Slipp (@AnnaMcSlipp), Amy Gilmer (@ThePatientSide)
  8. Practicing Physicians: Wendy Sue Swanson (@SeattleMamaDoc), Dirk Stanley (@dirkstanley), Jen Dyer (@endogoddess).
  9. Famous Physicians: Farzad Mostashari (@Farzad_MD and, of course, @FarzadsBowtie), Eric Topol (@EricTopol), Atul Gawande (@Atul_Gawande)
  10. Leaders: Margaret Cary (@Boundroid), The #HCLDR Team - Lisa Fields (@PracticalWisdom)/Colin Hung @Colin_Hung), Gregg Masters (@2healthGuru), Pat Masters (@DocWeighsIn)
  11. Transformers: Leonard Kish (@leonardkish), Susannah Fox (@SusannahFox), Jane Sarashon Kahn (@healthythinker).
  12. Some Quirky Non-Health Related Follows: Guy Kawasaki (@GuyKawasaki), Boing Boing (@BoingBoing), and Crumpy Gat (@CrumpyGat).

Need a little Twitter 101? Here ya go:

  1. @ signs are put in front of user names to mention them in tweets. Follow people you think you’ll be mentioning often so twitter knows to autocomplete the username.
  2. Brevity is king. You have 140 characters, use them wisely. Resist the urge to use strange abbreviations. (Example: you want to use the word “atrocious” but it won’t fit, so use “bad” instead. Don’t try to abbreviate it “atrocs”).
  3. Make sure to use #Hashtags at conferences – search by hashtag to figure out who else is there and meet up in person. Check out symplur.com for a list of commonly used healthcare hashtags.
  4. Favorite things (clicking the star button) you want to find later. I usually favorite things when I don’t have time to read the link someone posted but want to eventually and/or someone says something nice about me that's nice to remember).
  5. While retweeting is nice, adding something to the tweet is even nicer. Unfortunately you can’t do this in the Twitter browser without a third party app like Buffer. If you use an iPhone you can click “quote tweet” and add to the conversation. Even if you retweet without modifying tweets you’re still broadcasting the information to your audience which spreads the content.
  6. A lot of people like Direct Messaging (DM). Personally I find it annoying because the Twitter messaging service is a little janky and only works half the time. Use at your own risk.
  7. It’s good practice to reply to people who mention you and thank them. A lot of people thank people for retweeting or following them. I don’t usually do this, but I probably should. Sorry Twittersphere…
  8. When you write your bio you get 160 characters, not 140. Use the extra characters to add a “Tweets are my own.” Many companies have social media policies require a statement like this. Even if yours doesn’t currently, it probably will, so get ahead of the game and disclaim!
  9. Don’t be a creeper – make sure you upload a profile picture.
  10. Join the conversation.

 

 

This year I get to be one of the 41,000 Americans to develop a Central Line Associated Blood Stream Infection (CLABSI). Since the general population’s chance of getting one of these is .0001%, I feel pretty special. As it turns out, these things are deadly and expensive. Since I’m me, I managed to get the most deadly kind of enterobacter bacteremia, enterobacter cloacae. Like the 42.6% of people die kind (usually CLABSIs only kill 12-25%). This also means it was the expensive kind. Haven’t seen a final bill, but based on past hospitalizations, my insurance company will actually pay out about 89 thousand dollars (average is $16,550) for the ten nights and 12 days I spent in the hospital. While definitely the most serious side effect of the PICC line, it was simply the last in a saga of medical errors and complications associated with the two lines I had.

This warning brought to you by: Kolya

Complication 1: Intraluminal Occlusion

The day after my Intravenous Lecture, my friend dragged me to the ER and they forgot to flush my PICC line with Heparin. Which means it clotted. Which means I was back in the ER 12 hours later and had to have the thing removed due to a intraluminal occlusion (while not as special as my CLABSI, still only 3-9% incidence rate).



Getting a line removed is totally painless, but knowing it was the first time someone did it kinda freaked me out.

Despite what I was promised by the advice line, the ER wouldn’t put in a replacement PICC and told me I’d have to go back through my cardiologist’s office for the replacement, Unfortunately, if I don’t do the saline therapy, I pass out. Which I did, about ten times in two days. When I woke up on day three, the hospital magically had an opening to replace the line that we followed with a three day admission to bring me back to stable. Which was awesome.

This hospitalization brought to you by: Ekat, Whitney, Phil, Brad, Marie, and Kathleen.

Near-Miss-Complications 2 and 3: Possible Clot and Line Movement

After I got the second line life was good - only complication in two months was a clot that resolved pretty quickly (if it was even there). The line also moved 2 inches out of my arm which I didn't realize was a problem. When I eventually ended up in the hospital for the CLABSI, the nurses there freaked out that my home care nurse hadn’t sent me in for an xray to check the line placement. Whoops.

Looks clear to me!

Looks clear to me!

Complication 4: The Healthcare Associated Infection

The six weeks of relative bliss eventually came to an end and I ended up in the ER and left with  a concussion and an infection. Will it get reported as an HAI? Probably not since there were multiple parties involved in the line’s care (me, home nurse, prompt care, primary care), but considering the timing, I’m pretty convinced I got it at the ER.

I live in a studio apartment with six separate forms of hand cleaner. It definitely wasn't me.

As per usual, I ignored my symptoms and went about my business - presenting at XXinHealth with, as fellow speaker Donna Cryer put it, a lovely 102 degree glow. At Datapalooza the next day, I mentioned the fever to a friend who tattled to everyone’s favorite bow-tied doctor - who was finally able to break through my ill guided notions that I might “burn it off." By the time I got to the hospital, I was running a fever of 103.8 and was pretty sure my teeth were going to chatter straight out of my head. All things considered, I didn’t feel that bad – I actually felt a little guilty for getting jumped ahead of the kid who obviously had a stomachache. Granted I was on the verge of septic shock, but you know, whatever.

Complication 5: The Allergies

They admitted me and tried some Vanc for the more common bacteremia. Then my culture started growing something gram negative, so they freaked out and called infectious disease who said the PICC line had to come out. Anyways, once they determined I'm also allergic to penicillin's first cousin, Piper, I was finally started on my stalwart, Cipro, and stopped hallucinating. Which kinda took all the fun out of this whole saga, but I guess it had to end in the interest of, you know, living.



PICC line removal. They called me sweetpea.

Since I had to do twice a day IV antibiotics and my veins love to blow, the hospital had to keep me until they could place a port for home antibiotic therapy. Port placement was an adventure in and of itself - there was an epic yelling match in the OR between the surgeon and the nursing team over patient throughput (took 6.5 hours instead of 1) and whose job it was to make sure I'm not pregnant. Then the anesthesiologist, who was actually a DDS, asked me what grade I'm going into next year. Sparkly blue nail polish actually does take off ten years. Who knew?

Then we had a series of totally minor allergies. First they used sorbaview to cover the port when I asked them not to and ended up with an awesome rash and some blisters; it's been two weeks and they're mostly cleared up, so it's ok. Then I was discharged and the homecare company gave me drugs which, while labeled correctly, were set to incorrect rates; the resultant rash went away in a few hours and I didn't actually puke, so it's cool. Then I was prescribed contraindicated drugs that more than doubled my blood pressure; still, got off totally stroke free, so it's all good.

This hospitalization brought to you by: Ekat, Konstantin, Kathleen, Wen, Ted, Rebecca, Stephanie, Stephanie, Sam, Brad, Marie, Randi, Regina, and Isaac. More experiences from it can be found here. 

What was the point again?

So what’s the point of all of this? The point is that when you’re working with humans there will be mistakes. Most of them won’t kill you. But when you’re working with central lines, they might. See, I’m not immunocompromised and I still spent 12 days in the hospital over an HAI. And that’s a big, big deal. Particularly because it was completely avoidable. Proper hand hygiene is the easiest, cheapest, and most effective way to bring down the number of HAIs. I know that- it imprinted on my brain during grad school and my lean six sigma green belt project was on hand washing. But even I don’t know what nurses can touch with their bare hands after using hand sanitizer, what they need to wear gloves for, and what they need to be sterile for (untouched by human hands). I asked about the observed differences in technique and my nurse told me that variations were due to whether a nurse had a bad experience with a drug before (eg it spilled on them before and they got sticky so they now wear gloves).  Ad hoc variation aside, my most shocking observation is how nurses interacted with pagers/phones. There were many times in which a nurse would be wearing gloves to fix my IV, have their phone ring, pick up the phone, and then go back to what they were doing  without changing gloves or washing their hands. It’s as if the phone was magically excepted from clean and sterile procedures. The "need" to be connected all the time has become ingrained into our culture at the expense of patient safety. As much as I love technology, I'm not a fan of it when it could kill me. So if you learn nothing else - don't text and drive. Or touch central lines. Trust me on this one.

So, this one time I totally spent a whole summer vacation in the hospital, just to see what it was like. Not really. But I did manage to get a central line infection from a PICC line and actually did spend my summer vacation BEATING DEATH (you wish you could say that). Anyways, it was twelve (AWESOME!) days in the hospital which weren't actually that bad because I spent the whole time eating breakfast in bed and seeing like all my friends. We even had a whole Google+ event on it (hosted by the lovely Ted Eytan). We also had an awesome google hangout. Yeah, my friends are amazing.

Day One

 

Grow Baby, Grow!

Grow Baby, Grow!

You know that feeling when you get a 104 degree fever? Yeah. That feeling. But you don't have to wait in line at the ER so that's excellent. Plus, blood stream infections don't make you sick like flu sick, they're just a fever which doesn't actually feel that bad (Obviously you should trust the memory of the person who was shivering like it's Antartica, not in DC in June...).

Day Two

We need a drug pump for zofran?

We need a drug pump for zofran?

And then you just spend a day bored out of your mind? But you did have some kinda awesome hallucinations. And you got to see your favorite suit who gave you a Little Mermaid pin.

Day Three

PICC lines are rough, man!

PICC lines are rough, man!

And then they try you on Penicllin's cousin, Piper (which you're allergic to) and literally crawl on top of you to change out your PICC line dressing for (seemingly) the fun of it? But your friend totally brought you Kale AND an all organic-vegan milkshake which made your inner Berkeley dance.

Day Four



And then they pull out your PICC line (not for the fun of it). But your friends bring you homemade strawberry jam and make you a sock puppet, so the nurse still calls you her "happy flower" and you know it's all going to be alright?

Day Five

And then Smokey Bear says you have to get new iPhone cords? But then your friends come to visit because they're awesome? Yeah, this friend, and this friend.

Day Six

And then you start to make friends with your food and everyone decides that after day 5 you must be dying so they start sending you Bible verses and the timing kinda-sorta-freaks you out?



And then you (actually) start dying, but it ends up ok?

Day Seven



So you wake up and do a half crazed monologue on beeping alarms and then you totally sign off on a surgery without really knowing what you're getting into?

video call

But then you google hangout with this friend, and this friend, and this friend, so it's cool.

Day Eight

And then they play around in your neck (again, for the fun of it). But then you get to eat as many cherry popsicles as you want so it's awesome?

Day Nine

And then you can't get out of bed again, but your friends bring you Matzah Ball soup, so crisis averted.

Day Ten

New Drugs! Winning!

New Drugs! Winning!

And then you pass out? But you got new drugs, so you know it's all going to be winning.

Day Eleven

 

And then they say you may never get to leave? But then the sunshine of life brings you Chipotle (Pooh brought to you by this friend), so it's actually a super fantastic day?

Day Twelve

Made Bail!

Made Bail!

And then you make bail, and Mom and Dad take you home. And it's all winning. No buts about it.

TeamJessBanner

 

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

OLYMPUS DIGITAL CAMERA

 

 

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

IMG_2050

So it finally happened. I passed out at work. On my way back from a seminar in the Switzer building I passed out. When I came to, Farzad Mostashari was checking my pulse. I remember looking up at his bow tie and kinda freaking out (It's an awesome bow tie and all, but he's kinda a big deal...). Then he was yelling my medical history across the parking lot at HHS. To I guess, the rest of his people, I think they're pretty much all doctors. Such a dignified moment for me.

Anyways, as this was the first time this happened at work, people pretty much insisted that I go to the hospital. Considering there were at least 10 doctors standing around, I figured they must be right (and if not, best to peace out ASAP!). ]I got a room in the ER where they did a standard workup. It checked out (as always). After about 4 hours I got moved to the hall. Sat there for a few hours. All of the sudden I get told that I have a visitor. I was expecting my "multiple delegates" from school, but not Wil and Sachin. For all their suits and hard work, those ONC guys are good people.

At this point I had been admitted and was waiting for a room. Just after Wil and Sachin left, some guy called me a "cracker ass ho" and let me know there was no possible way I could actually have health problems. He was laying on a gurney not even a foot from me and making my head hurt like hell since I had smacked it a few times since getting to the ER. It was at this point, Phil, Karen, and Matt came to visit and brought me a Happy Meal (best friends ever!). I remember hugging Matt and not wanting to let go. I wanted someone, anyone to hold on to.

Eventually my head hurt so bad that I left a note on my bed and found an empty waiting room and just sat for a minute. Unfortunately a resident found me. Apparently I wasn't supposed to be out of bed or off the monitor. But my head hurt so much and the guy yelling was just making it worse. Plus, the monitor was out of batteries and wasn't recording anything anyways.

IMG_2050

Upon making it back to the ER (we're at hour 12 here...), the resident put me in another room. Finally quiet. Five minutes later my bed was ready. Guess that just goes to show that when you give up, you get what you were waiting for.

Anyways, got my telemetry bed at 2Am. Finally got to sleep. Then rounding at 6. At 10 we had the cardiology teaching contingent. All 5,000 of them. So stressful to have all of these people in my room. The head pontificated saying there was nothing he could do.

I immediately lost it. I could have gone home the day before. Hours and hours of my life were wasted. I was yelled at. My head hurt. My friends could have taken me home hours before. I could have been home, asleep. But instead I had been convinced that someone was going to help me.

So I left. Unfortunately I didn't make it far. I made it to the exit and ended up half conscious on the stairs exiting the hospital. They called rapid response and took me back to my room. I remember the cleaning lady saying my bed wasn't clean, but they told her it was mine. I definitely wasn't being logical. It's weird that whole occurrence seems like a dream, as if I were under water for the whole thing.

An hour later I called Phil. I was so broken down I was crying, begging him to come get me. I didn't want to be there. Two hours later the neurology guys came to see me and seemed to have a remedy for what ailed me (had I known they were coming I wouldn't have checked myself out -- communication FAIL!).

Karen and Phil came to get me about 2PM. I wanted to go to school. They vetoed that idea (mom and dad are smart!). I had energy for about five minutes while Phil made sure that I got paper copies of my neurology session. Once I was back in my bed I started to crash. Transport got me to the lobby and had to leave before Phil got his car around. By the time they got me in the backseat, I was half conscious again.

I remember Phil and Karen getting Chinese food. They tried to feed me but I wasn't hungry. Then they took me home. My body wouldn't keep a temperature. First I was hot. then I was cold. They were worried. For the life of me, can't figure out why I got discharged. Phil wanted to check me back in, but eventually it was all good again.

No solutions, just a wasted night. But, hey, at least I had my people.

calstanford

As always, I never cease to freak doctors out. When I was at Stanfurd this past week, I had the misfortune of passing out as I left cardiology. After passing out I, of course, tried to escape and consequently hit my head on a tree. Then THIRTY doctors RAN at me. With a crash cart. In the rain. It was ridiculous—I think all the interns wanted me to die. You should have seen how crestfallen they were when I didn’t have to be shocked. (more…)