If you've wondered why I've been under the radar lately, look no further than my odyssey of medical maladies; in addition to my ongoing struggle with POTS, this year I've had: a kidney infection, shingles, pneumonia, a pulmonary embolism, and four blood transfusions. Since I’m a numbers person, I downloaded my claims data from my insurer to get a better idea of how much time I’ve wasted in the healthcare system since January 2014.

Useful Visits

This last year I had 56 outpatient doctor visits, 20 emergency room visits, and spent 54 days inpatient. But how many of these visits were useful? As you can see in the table below, not many.

Total Visits Useful Visits Useful Visits Useless Visits
Outpatient
Cardiology 7 3 43% 57%
Endocrinology 1 1 100% 0%
Gastroenterology 6 2 33% 67%
Hematology 2 1 50% 50%
Neurology 1 0 0% 100%
Ophthalmology 1 1 100% 0%
Pain Specialist 8 3 38% 63%
Primary Care 15 2 13% 87%
Psychology 11 2 18% 82%
Rheumatology 4 0 0% 100%
56 16 29% 71%
Inpatient
Emergency Room 20 9 45% 55%
Hospitalizations 9 8 89% 11%
Hospital Days 54 10 19% 81%
Ambulance 7 3 43% 57%

I used the following definitions of ‘useful’:

  • Outpatient visits were ‘useful’ if it resulted in a change to my treatment or I underwent a test/treatment. Appointments consisting of prescription refills without dose changes, advice I already knew, or second requests for the same thing were counted as useless visits.
  • ER Visits qualified as ‘useful’ if they resulted in a new diagnosis or ended in a necessary hospitalization. Since there's been a bit of twitter back and forth on this point - the reason some ER visits aren't useful (or are even harmful) is usually for one of two reasons: 1. They refuse to manage my pain because I "have pain medications at home" or 2. I have to make multiple visits for the same reason in a short time frame (for my last blood transfusion I went to the ER three times in the same week before they transfused. At the time of the first ER visit I had a HgB of 8.3 that had dropped from 9.3 in two days. They made me wait until it hit 7.1 before transfusing, despite me being symptomatic during the first ER visit and this being the fourth time this year we've done this song and dance routine.). 
  • Hospitalizations were designated as useful if they were unavoidable. One of the hospitalizations for nausea/vomiting may have been unnecessary.
  • Hospital Days included a test or treatment; days where the only treatment was saline and Zofran do not count as useful.

Time Wasted

Here I looked at how long it takes to schedule an appointment, wait in the waiting room, fill out paperwork, wait for nursing, discuss the case with the student/intern, and consult with the physician responsible for my care by specialty.

Average Visit Breakdown (In Minutes)
Outpatient Sched Wait Rm Pprwk RN Student Consult Visit Total
Cardiology 15 50 10 10 5 10 100
Endocrinology 0 15 5 15 0 5 40
Gastroenterology 15 120 5 10 5 5 160
Hematology 120 15 10 10 5 10 170
Neurology 30 10 0 0 0 5 45
Ophthalmology 0 20 10 0 0 30 60
Pain Specialist 15 50 5 10 15 2 97
Primary Care 20 30 10 10 5 15 90
Psychology 15 60 5 0 5 45 130
Rheumatology 20 120 10 10 5 5 170
Inpatient Wait Rm Pprwk Waiting RN Student Consult Visit Total
Emergency Room 180 15 240 15 15 10 475
Hospital Days 30 15 1320 60 30 5 1460
Ambulance 15 15 30 0 0 0 60

Some Observations:

  • The fastest experience was with a neurologist who had me in and out of their office in 15 minutes flat; unfortunately he just told me to come back in six months to see if I spontaneously got better (after waiting six months for an appointment).
  • The most egregious offenders here are GI, Psychology, and Rheumatology, all of which have, on average, three hour wait times as they routinely forget I’m physically in the office waiting for them and/or cancel my appointment without calling me.
  • My current pain specialist sees me, on average, for 2 minutes per visit, having fourth year medical students examine me and practice giving an (unnecessary) exam. I have to see her each month to get my prescription due to policies and legal issues with prescribing. In calculating usefulness I included student interview time as useful for pain as it's being used to supplement physician time.   
  • On average I wait 20 hours to get a bed in the hospital. My last two admissions were doozies – last time I spent 48 hours in an on-call room, the time before that I spent 27 hours in a hallway (with a pulmonary embolism). I didn’t sleep the entire time I was in these makeshift environments which is obviously detrimental to the healing process.

Value Quotient

In Lean there’s the concept of Value Added Time (things the customer will pay for) and Non-Value Added Time (things not of value to the customer). Since I’m the customer in this situation, I get to define what’s valuable to me and what’s not. Here I defined Value Added time as:

  • Outpatient Care: Total consult time plus one episode of paperwork and one episode of nursing per specialty. At least once a year I need to update my paperwork, but when there hasn't been a change (and there hasn't been since January) refilling out the forms is unnecessary. Same thing when it comes to nursing/medical assistants - last week I saw 3 outpatient specialists on the same day, in the same system, using the same EHR. All 3 still insisted on taking my height, weight, blood pressure, and temperature. All 3 readings were essentially the same. 
  • Inpatient Care: Total consult time and nursing time. Please remember it's an average - when a 2 hour procedure is preceded by 3 days of nothingness, on average that's only half an hour of value per day. 

The Value Quotient is value added time divided by total time. Here I did two calculations – one which calculated the value per visit, and one which discounted the Value Quotient per visit by the percentage of visits which were useful.

Value Breakdown

TotalTime(Hours) Non-ValueAddedTime(Hours) ValueAddedTime(Hours) ValueQuotient(Total) ValueQuotient(Discounted)
Outpatient
Cardiology 11.67 10.17 1.50 12.86% 5.51%
Endocrinology 0.67 0.25 0.42 62.50% 62.50%
Gastroenterology 16.00 15.25 0.75 4.69% 1.56%
Hematology 5.67 5.00 0.67 11.76% 11.76%
Neurology 0.75 0.67 0.08 11.11% 0.00%
Ophthalmology 1.00 0.33 0.67 66.67% 66.67%
Pain Specialist 12.93 12.42 0.52 3.99% 1.50%
Primary Care 22.50 18.42 4.08 18.15% 2.42%
Psychology 23.83 15.50 8.33 34.97% 6.36%
Rheumatology 11.33 10.67 0.67 5.88% 0.00%
106.35 88.67 17.68 16.63% 4.75%
Inpatient
Emergency Room 158.33 154.75 3.58 2.26% 1.02%
Hospital Days 1296.00 1290.50 5.50 0.42% 0.08%
Ambulance 7.00 6.50 0.50 7.14% 3.06%
Total (Minutes) 1567.68 1540.42 27.27 1.74%
Total (Days) 65.32 64.18 1.13

 

Some Observations:

  • The only reason Primary Care received any value attribution is because I need someone to renew prescriptions for anti-nausea drugs, letters for FMLA, and send records to hematology. I feel bad that their years of medical school and residency are being wasted on purely administrative procedures.
  • Some of these specialties were overly impacted by the amount of time it takes to schedule visits. For instance, hematology took six months and over four hours of my life to schedule one visit; however, the time spent with the doctor herself is quite valuable. Conversely, Ophthalmology and Endocrinology were scheduled using a third party platform so the scheduling process was very smooth, but using the third party platform led to billing issues. If I accounted for the time-value of money, the numbers would shift a bit.
  • Since anxiety and sleeplessness make my conditions worse, you could argue that time spent stressing over potential central line infections from sloppy nursing, negotiating with physicians to receive humane treatment, being woken up by medical students for their educational benefit, developing a kidney infection due to inattention and disregard, and it taking multiple ER visits for an issue to be treated should count as iatrogenic harms, but let’s keep the math simple here.

Recap

This past year I’ve had 20 ER visits leading to 9 hospitalizations spanning 54 days. I haven’t had a single vacation day that hasn’t been spent in or at the hospital this year. Looking at a recent HR statement, I’ve taken ten weeks off related to my medical conditions, most of which was unpaid. If I don’t take the whole day off for an appointment, I have to get to work early or stay late. Additionally, you only get so much FMLA time and if I'm wasting it being stressed out by nurses and back-channeling doctors to coordinate care, I'm not using the time to heal.

I understand that my case is complicated and it takes a significant amount of time to coordinate. However, there's no reason I need to physically be in the physician's office or at the hospital while they make phone calls on my behalf. I’m a social person and every second I spend in the hospital or ill is another second I’m missing out on friends and family, that I'm missing out on life. Speaking of friends, they've been immensely supportive of my care. Since I've had so many bad ER experiences I now refuse to go without a companion - ie it's not just wasting my time, it's wasting #TeamJess' time as well.

So yes, I owe the medical system my life for giving me blood when my hemoglobin drops deathly low. But there's no reason a 4 hour transfusion required 84 hours of negotiation and frustration. There's no reason that only 4.75% of outpatient visits and .08% of my hospitalizations are spent actively treating my condition. There's no reason that I spent two solid months (1540 hours, 64.2 days) of this year waiting instead of healing.

So, please, stop wasting my time. Stop wasting my life.

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Meme'd photo of my cat Oliver by Dr. Hayman Buwan, @CurryJazz. Apparently the words on the clock are Italian and say "Punctuality and Courtesy is of the King"

11:00PM: Pass out. Smack head.
11:25PM: Pass out. Miss head.
12:00AM: Pass out. Get caught. (Rinse. Repeat. 5x. 12:30-1AM).
01:00AM: Get picked up and carried to bed. Have friend leave.
01:30AM: Have friends come back. And attempt to convince you to go to the hospital.
01:45AM: Call your friends in CA to convince your friends in DC that you don't have to go to the hospital.
02:00AM: Sleep.
04:00AM: Wake up. Go to bathroom. Pass out.
05:00AM-11:30AM: Exist in Twilight.
03:30PM: Have friend come back.
03:35PM: Have friend call his doctor friend in a thinly veiled attempt at convincing you to go to the hospital.
03:40PM: Know what he's doing and go to the hospital even though you don't think it's necessary.
04:00PM: Arrive at hospital. Have no idea what happens to the car.
04:03PM: Get escorted back to room.
04:05PM: Get hooked up to every machine.
04:10PM: Try to make deal that involves an abortion to avoid peeing in a bedpan.
04:12PM: Fail.
04:15PM: Get stuck.
04:16PM: Get stuck. Have nurse give up.
04:30PM: Get stuck.
04:32PM: Get stuck. IV Success!
05:00PM: Make jokes about tweeting at Todd Park.
07:00PM: Almost get a CT scan. Almost pass out instead.
07:45PM: Lose talking privileges in re: work.
07:55PM: Lose talking privileges in re: everything.
08:00PM: Get CT scan.
08:10PM: Try to make deal to leave hospital.
08:12PM: Fail.
08:15PM: Sit up to breathe. Get dizzy and nauseous. Almost pass out. Get caught. Be laid down.(Rinse. Repeat til 11PM).
11:00PM: Freak out.
11:02PM: Get told you’re being admitted.
11:03PM: Get morphine.
11:15PM: Agree to license the 3 M’s to a nonprofit.
11:16PM: Stereotypically outsource thinking to Indian friend.
11:17PM: Finally get that Morphine trumps Mind and Matter.
11:30PM: Get fed pringles and Gatorade. Think it’s the best thing ever.
11:45PM: Get moved to hall.
12:00AM: Fall out of wheelchair. Have friend pick you up put back into bed.
12:15AM: Get transported upstairs.
12:30AM: Get put into bed.
12:40AM: Have friends leave.
12:45AM: Get new telemetry devices and percocet.
02:00AM: Get morphine.
02:30AM: Fall asleep.
03:00AM: Get woken up by IV beeping.
03:15AM: Have nurse turn off IV noise.
03:20AM: Get woken up by IV beeping.
03:25AM: Hit IV buttons til they stop beeping.
04:00AM: IV starts beeping. Go into hallway and freak out over beeping. Almost pass out.
05:00AM: Get Ultram.
05:30AM: Sleep.
06:00AM: Get woken up for blood pressure.
06:15AM: Sleep.
07:00AM: Get woken up for blood draw.
07:15AM: Sleep.
08:00AM: Get woken up to talk to med student.
08:15AM: Sleep.
09:00AM: Get woken up by roommate’s doctors.
09:15AM: Sleep.
11:00AM: Get woken up by roommate’s visitors.
11:30AM: Have Drs and 15 med students round. Get told there’s nothing they can do.
12:00PM: Call nurse and go to bathroom.
12:05PM: Pass out. Not get caught by LVN you called. Hit head.
12:10PM: Get visited by nurse manager.
12:15PM: Puke. Start Shaking.
12:30PM: Have doctor come visit and tell nurse to give Zofran.
12:32PM: Have nurse refuse to give medication until the doctor physically writes it.
12:33PM: Have doctor promise to write script.
12:35PM: Get Zofran.
01:00PM: Get more Percocet.
02:00PM: Fall asleep.
02:30PM: Wake up because IV has blown and is leaking all over the place. Hit call button.
02:45PM: Get tired of waiting for nurse. Stop IV flow yourself.
02:50PM: Have nurse get mad because you made her replace her gloves before she replaced your IV.
02:55PM: Get stuck.
03:00PM: Get stuck. Have nurse give up and refuse to pull out infiltrated IV.
03:30PM: Have tech come to replace IV.
03:33PM: Get stuck.
03:35PM: Get stuck. It works.
04:30PM: Have nurse come back and reconnect IV. Remind them to pull out leaking IV.
05:00PM: Get dinner.
05:30PM: Puke.
05:40PM: Ask for more Meds.
06:45PM: Get more meds.
07:30PM: Exist in twilight
08:30PM: Have friend show up with Happy Meal. <3.
08:45PM: Get discharged.
09:15PM: Pass Out.
09:20PM: Get tucked into your own bed.
09:30PM: Fall Asleep. Stay Asleep. Bliss.

Alice is the most wonderful mentee ever.

Alice is the most wonderful mentee ever.

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"

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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...

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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.

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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.