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.

IMG_6078-1.JPG
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"

8197658371_d50573660a

EssenceofGradSchool

I got this paper in on time. No excuses for this girl.

EssenceofGradSchool

Though, to start one IV, it required:

To start 1 IV:
- FIVE veins
- 2 nurses
- 3 needles
- 6 gloves
- 2 tourniquets
- 2 sheets
What'd my friends have to say?

OskiCalCard

[[ No, it won't always go the way it should, but I know the heart of life is good -- JM ]]

Some amazing things have been happening. No, I didn’t get into grad school (one can hope….), but I did get a huge opportunity to create a public health reporting system for TLH. I get figure out what holes are missing in the statistical correlations between HIV/AIDS and STD's and create supplemental questionnaires about behaviors which might effect the results. I’m so excited.

[[ Thank you for making me struggle, Tell me the world ain't mine -- I'm a miracle baby -- I refuse to lose -- Tell me what do you see when you look at me -- On a mission to be what I'm destined to be – M/TI ]]

Secondly, I became a site administrator for sfhomeless.net, a totally awesome wiki targeted at players in the homeless community

[[ Give me your eyes for just one second -- Give me your eyes so I can see -- Everything that I keep missing -- Give me your love for humanity -- Give me your arms for the broken hearted -- Ones that are far beyond my reach -- Give me your heart for the ones forgotten -- Give me your eyes so I can see -- BH ]]

Ok and finally… I Ran. On the verge of becoming trite, "I can’t believe it." I ran an 11.5 minute mile today. I haven’t run a mile since, well, yesterday (15 mins), but before that I haven’t run in probably a year. I couldn’t believe I didn’t pass out! I finally feel like I’m getting control of my life. This week I grew up. No, really. For the first time in my life, I knew, on my own, when I couldn’t handle that whole fainting thing and I actually asked for help from a qualified medical professionals (ie the emergency room). Not only that, when they brushed me off, I went back and got hyphy with them. And it got results. It was completely unprecedented by my previous actions and for that I am amazed with myself. I wasn’t independent and at the same time I was my own advocate. Seriously people, be amazed.

[[ No more stress, now I'm straight -- Now I get it now I take -- Time to think, Before I make mistakes -- That part of me left yesterday -- The heart of me is strong today -- No regrets I'm blessed to say -- The old me dead and gone away -- TI/JT ]]

Untitled

I feel the need to address some simple matters of safety. So it's not so much that you're doing it wrong, as, well, you're doing it wrong.

Now don't get me wrong, I appreciate all you guys do for me, it's above and beyond what most friends ever have to do and I'm really blessed to have you all.

But while I love you, I'd also love it if we could streamline this passing out business. (more…)

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…)

samhat

I’ve finally killed Pop-Teal, Concrete Diver.

The sign reads "Call, Don't Fall"

Correction:

I’ve finally lost the “concrete diver” part of the moniker.

Having to take a defibrulator everywhere with you is kinda stressful...
As most of you know, last Friday’s visit to the Emergency led to a full week in the Cardiac ICU. It was grand fun. While I was there I got chased down by nurses, went through four roommates, heard eight code blues, got kissed by a Berkeley emeriti, and picked up an orderly. Good times.
Note the boxes. They hellof abused me!
Frank was a pretty cool friend 🙂
I was tested to the EXTREME—we had constant monitors, echos, ekgs, CTs, blood, a few hot doctors and a few ugly ones, and finally the tilt-test. The tilt test is what kept me there for EVER, and all I know is it was a success- my HR jumped so high they decided that shocking my ass back to life was a bad idea, skipped the end, and went straight to diagnosis.
That's my heart-- how awesome is that?!?!
Apparently I have Postural Orthostatic Tachycardia Syndrome-- I’m a POT. Basically, my heart rate jumps from a nice, normal 60 BPM, to something like, oh, 190+ when I stand up. This is where all that insane energy comes from, if I’m not using energy, I’m dead. My life suddenly makes sense.
I tell you, abused!
So no, I am not Amy Winehouse, though the quote concerning her from WWTDD is still appropriate: “When you’re 2{1}-years-old, and you’re in the hospital this often, and you’re not a cage fighter or black market mercenary, something is up. You should get arrested just for that.” We're gonna hope that the drugs will make this a little less accurate...
My room with a view-- you could see the sunset over the bay from it!
A special thanks to my loves for coming to visit me and bring me food and basically making a week in the hospital possible. Really, I couldn’t have done it without you.