Daily Archives: October 4, 2018

A Patient Reacts to Medical Dramas.

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This is me, 2 months after aortic graft surgery with complications, in 2013.

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A patient in recovery on _House_.

There must be some kind of HIPAA for TV patients because after numerous search combinations I can’t find many pictures of TV patients in recovery from surgery, but we’ve all seen them: awake and talking hours after a complex surgery, with maybe a fake ID or a basic oxygen cannula or a bandage or two.  No blood or other fluids oozing all over the place.

I don’t watch a lot of medical shows.  I like House and I like The Good Doctor and a few others that are more dramas that happen to be about doctors than they are “medical shows.”  Usually, when surgery is depicted on TV, it’s either so graphic it causes me PTSD  or it’s so unrealistically “clean” it’s frustrating.
The season 2 premiere of The Good Doctor features a patient  who needs a “piggyback” heart transplant, a procedure that has been around since 2004.  The episode frustrated me so much I wanted to see if anyone wrote about it, and I discovered a couple YouTube shows where doctors review medical dramas or sitcoms.  Then I looked to see if there was an equivalent series for patients, and there is none. Since I can only speak above a whisper, and since I don’t know how to do all the fancy effects of a YouTube channel, I decided to do it as a blog post.

So, the Good Doctor episode: they’re getting ready for this surgery and discover a massive aortic aneurysm that they somehow never picked up on previous tests.  A dissection would be believable.  But an aneurysm?  Then they refer to a “teflon” graft–aortic grafts are made of Dacron, which contains teflon, but I have never heard a doctor say “teflon” graft.  Then they act like the aortic graft is what’s “risky,” and not this heart procedure.  I have had an aortic “teflon” graft that goes “all the way to my heart” for 22 years.  It’s nothing new.  Also, IRL if they discovered such a potential complication, they would do two separate procedures.  When I had the surgeries in the picture above, they first grafted from my left carotid to my left subclavian.  Then, a week later, they grafted my descending aorta.   Then I had some kind of surgery about once a week for a month and a half.  Were it a  TV show, it would be all done in less than a week, and I’d have left the hospital happy and smiling, instead of barely functional after 3 months.

To wit, medical dramas are their best when major characters are patients and their care is actually shown in a realistic timeline with realistic reactions and complications.

Non-medical shows are just as bad: character has some health crisis and it’s all resolved in an episode or two: no long term scars or broken bones that never quite heal right–unless the storyline is to account for an actor’s real life health issues.

Every time I look in the mirror I see the scars.  If I look at my hands closely enough I can see the scars from various long term IVs from hospitalizations.

You never see that on TV.

Then there was this week’s Good DoctorShaun tells his supervisor, Dr. Melendez, that he thinks the janitor has pancreatic cancer because of acid reflux, jaundice and some other symptom.  Melendez walks by the janitor and agrees.  They do a “full workup,” whatever that means.  In less than a day, they’ve given him all sorts of tests, “on the hospital’s dime,” and sure enough he has cancer, and they do a surgery, and well, in this case he dies but you know the drill.  Either the patient dies and there’s some kind of ethical debate or life lesson for the major characters, or else the patient lives and (see above).

Real life: doctor sees a lump on your foot.  Combined with other symptoms, he thinks it might be cancerous.  He’s pretty sure it’s just a bone spur but wants to be sure.  So he orders an X-Ray.  That doesn’t  settle it, so he orders an MRI.  This whole process takes nearly a month, not a few hours.  MRI thankfully confirms bone spur, but after a month of worry you now have to deal with the fact that your insurance company has denied the MRI.

Doctor show: patient goes to the ER with a cough.  “I think you might be having an [insert “zebra” diagnosis here] because you have all these other symptoms you didn’t mention.”

Real Life: patient goes to the ER with, say, Marfan syndrome, multiple grafts and an abdominal aneurysm, and sharp pain in chest and back. He tells them that it has to be really bad for him to show up at all, that he’s having this pain in spite of high doses of pain medication, anti-gas meds, antacids, etc., and that he just wants a CT and an echo to make sure everything’s functioning properly.  He even tries to hand them a signed ER plan which they hand back to him.

Instead, I sat in the ER waiting room for 5 hours, surrounded by people coughing and hacking, later heard one of the people at the triage desk say, “We have to clear out all these Class C” people and looks up what that means, and found out it’s basically the ER term for hypochondriacs.  While I had been sitting there, they gave me an EKG and chest X-Ray, both of which I know are useless in showing whether anything is dissected or leaking, and both of which were “normal” when I had my actual aortic dissection.

Having arrived around 7 PM, I finally got into room, way in the back, at 11:45.  A nurse came in and I explained why I was there and handed her my sheet.  She looked at it, asked if she could keep it, and I said, “Yes, that’s why I brought multiple copies.”  She said she’d enter it into my chart (I had updated information from another hospital).  [A week later, when I went to see my regular doctor’s office at that hospital for a scheduled test, they did not have the updated information].
She ended her shift, and I went through the same routine with another nurse, and he was impressed I wrote the care plan myself.  The usual sequence of increasingly ranked doctors came in, and the highest ranked one actually seemed to be concerned that they’d made me wait this long. Then he finally ordered the CT which my wife had been assured over the phone around 9 PM that they had already ordered.
It was, of course, “stable,” though I know from experience that “ER stable” could mean a mm or more of growth in my aneurysm, which is the change my surgeon said would make it time for my next surgery.

TV Drama: Person has a dizzy spell.  Someone calls 911.  The hospital admits the patient till they know exactly what caused the dizzy spell.  Wants to know entire history.  House gets mad patient didn’t mention a dizzy spell in 1984, or sends his residents to break into the patient’s house to find information the patient might not have shared.

RL, Different Hospital: I lost my memory briefly.  I have a history of neurological complications of Marfan syndrome, including 2 or more venous ectasias (essentially brain aneurysms but supposedly they won’t burst), and potential dural ectasia and CSF problems but I can’t have the tests to formally diagnose them so when I have symptoms of a CSF leak I just confine myself to bed rest till I feel better.

My whole life I’ve had dizzy spells, loss of feeling in my legs, slurred speech, “migraines,” etc.  Some of that is explained by either or both of those conditions.  Usually, I’ve only gone to the ER when other people were concerned enough to insist on it, like when I’d nearly pass out in the hallway in high school.  I hate ERs because I know the’re pretty much useless.

For the past couple years, I’ve been getting migraines with audio aura, or something like waking dreams. It’s hard to explain, but I would feel woozy then get a sense of deja vu or nostalgia or whatever, feel like I was remembering something but not quite sure, and if I tried to focus on that, it would just get worse and worse, with this cacophony of noise in my head.  Usually, an aspirin or a nap would wipe it out.

In June, I started having such an experience and went back to my room.  My wife sent one of the kids back to check on me and I didn’t know who or where I was (from my perspective, I thought I’d slept for hours and just woken up).  They asked me all sorts of questions.  I  remember the experience but I remember “knowing” but being horribly confused and just unable to get the words to my mouth.

So they called 911.  I took the ambulance to the hospital, and felt better by the time I got there.  They did some meaningless tests, diagnosed me with “migraine,” and sent me home.

A month to the day later, it happened again, only this time I didn’t make it to the bed.  I feel and lost consciousness on the bedroom floor.  My wife had recently done an online CPR class and had the kids watch it with her.  Our 11 year old said, “Dad’s having a seizure!”

Called 911.  I woke up surrounded by EMTs.  They took me to the ER.  Yes, I was having a seizure, spent most of the night in the ER, but they didn’t admit me.  For once, I don’t remember a lot of details about what happened next, but I came home, and the next night my wife woke up to me seizing in my sleep.  She called again.  This time, she insisted they admit me.  The neurologist on duty was a cerebrovascular neurologist I’d seen before about my venous ectasias.  The first neurology resident was OK but the supervising resident insisted I was faking it or something and did some kind of physical assault to show that I wasn’t really having a seizure, ignoring my wife’s pleas for him to stop that he could kill me by the way he was applying pressure to my chest.

After my wife’s pleas, they admitted me.   We told them all the history above, and they said, “Well, that’s probably unrelated.”
After a frustrating weekend, they sent me home.  We didn’t understand at the time why they refused to do an EEG while I was there, but now I understand: the way to diagnose epilepsy is to wait till the patient is *not* in an obvious seizure, and if there’s seizure activity, they know it’s epilepsy and not anything else.  So after a week, I got the EEG.  Another week later, they called and said to come in for the follow up ASAP.  Yes, I had epilepsy.  Yes, they admitted that those audio migraines, dizzy spells, etc., had probably all been partial seizures.

Medical Drama (Again): “Tell us every health problem you’ve ever had.”
RL (office visit): “Don’t tell me all that.  What is the most urgent issue you’re dealing with right now.”

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