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.

“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"

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Back Camera

I had been sick for about a week. My heart rate was high, my fever was up. I wasn't happy. So about 9 pm I called Phil and asked him to take me to the hospital. On the way over to our regular haunt, I asked him to redirect to the local "rich person hospital" because the line's always so long where we're regulars.

So glad we changed directions! It was amazing. I got there and Phil took me in. By the time he parked the car I had a bed in the ER. Within 20 minutes I had had my blood work, chest xray, head CT, and was waiting for results. I was in a room instead of a hallway. I had TV. Phil and I were watching football (figured the guy deserved it).

Eventually they came back and said nothing was wrong with me and I could go, Phil pushed back and the Dr. said she'd admit me. It took about two hours to get admitted, much shorter than any other admitting process I've ever been through.

A doctor came and took some stats and I got an Rx for what amounted to Nyquil and water. Eventually I got upstairs. During transport I got to see some pretty cool glittery tiles they have on their hallway ceilings.

Once I was on the floor I had a chance to sleep. I woke up at about 4am because I couldn't breathe. They gave me some drugs and back to sleep I went. At about 6 I woke up again because my arm hurt. It was huge, obviously my vein had blown and the fluid was filling up my arm. I hit the call button but no one came to fix it so I stopped the flow and tried to go back to sleep (but didn't). An hour or so later a nurse said she'd pull it out, but forgot. Wasn't too worried, now that the flow was off, it didn't matter too too much and eventually the fluid would disperse.

Eventually the doctor came to see me - he noticed my labs showed I had an infection (for me that could trigger this kind of episode) and pulled out the IV. Couple of days on antibiotics later, I was ok and on my way to CA.

I find it a bit ridiculous that my "best" hospital experience was one where it took them 3 hours to pull out a busted IV. What I find even more ridiculous was I had been in a primary care clinic three days before (I'll forgive the ER oversight since they eventually figured it out...). All they had to do was run a simple test and it would have saved me three days of being totally floored and a trip to the ER. A simple oversight cost the health system thousands of dollars. But that's a rant for another day.

But like seriously, my arm...