Why we have to be educated - and insistent - patients

[user 246304]

Some may know I have a fairly significant medical history. Just a note on why it's important to educate ourselves, and push back when needs be. This isn't the first time I've gone to the ER on triage nurse's urging, only to be sent home saying essentially nothing's wrong. I've had a sharp pain under my left ribs for a couple of months. I have total body, constant burning due to brainstem damage from martial training during the 90's. So sometimes it can be hard for me to tease out various symptoms. But my guts are killing me - diffuse pain over whole abdomen - as well as this specific locus of sharp, severe pain under my L ribs. It's been so bad it's waking me early overnight.

6 hours in ER today, which I don't complain about. I have nothing but gratitude for and understanding of how stressed, understaffed and unappreciated medical care providers can be, and I try to go out of my way to let my providers know how grateful I am to them for their care over the years.

However, not the first time.

Resident Physician ______________, MD at 06/26/24 1431​

The text below was written for you by your provider. Please read it completely. You were seen in the Emergency Department for: Abdominal pain. Your CT did not show any findings that would be causing your pain.

She said all labs and CT scan were normal. Basically, she said in so many words, eat better.

I get home to read the results of my CT:

SPLEEN: Splenomegaly measuring 15.3 cm. Heterogeneous splenic enhancement.

IMPRESSION:
	1. Enlarged heterogeneous-appearing spleen, nonspecific but could be infectious. Isolated infiltrative process involving the spleen is less likely but difficult to exclude. Correlate with laboratory profile.

And my platelet count as of this month:

Low as of 2 measurements this month. It means I have an enlarged spleen, which is likely pressing up against other organs - in my LUH, left upper quadrant, i.e., right where I've indicated I've been feeling constant, sharp pain for several weeks now. The low platelet count is also possibly correlative - an enlarged spleen is more tissue and can entrap too many platelets, hence, low platelet count. Not to be screwed around with. I'm lucky I looked at the results and am reasonably well versed in understanding findings - and this isn't the first time I've had to essentially make a case for a suspicion later confirmed.

You have to be your own best advocate.

 

[smcinco]

Dang, hope it works out. My bro had a ruptured spleen, was no joke. Same deal, sent home from ER only to have it rupture.

 

[sibelman]

@Gadjobrinus , I hope you can quickly get the care you need. Best wishes.

 

[wdavis2003]

I had a similar experience. Took ECG, wore a heart monitor for 7 days. about 10 days later got the results of heart monitor through the patient portal which indicated AFIB. I hadn't received a call from the doc at that point so I had to initiate the conversation. There is a higher risk of stroke with AFIB so the delay in treatment could be deadly.

It's been a couple of years now and I'm all healed up but when you have a significant medical situation, time is not your friend.

 

[MaxStout]

@Gadjobrinus, I hope they can get some answers, and the right treatment, for this. Hold their feet to the fire.

 

[user 246304]

Very much appreciated guys. I've got a great team, and am grateful that with some rather rarish things, these people know my history well.** In part I don't blame physicians who have no context - especially in an ER context, where their job is to rule out more than positively diagnose. But it's happened enough inside and outside the ER that I've definitely learned to know my stuff going into any encounter.

**I.e., why would this guy complain of total body, constant burning, when he's only got spinal and hip arthritis? They'd have to know what central pain syndrome really is, and know brainstem damage has permanently changed my central nervous system firing - basically, on a molecular level, I'm firing on an unregulated and 1000% basis. incessantly. That's a lot to ask an orthopod looking at X-rays to consider in his or her wheelhouse. The good ones say "we just don't have an explanation." The bad ones think you're malingering, etc. Or say, "you can't be feeling this."

 

[sibelman]

I don't blame

Your forgiveness is surely commendable, and blame is seldom useful.

Doctors aren't perfect, and the pressures they're under make for more mistakes. That said, it seems the one who sent you home to "eat better" didn't really read the scan result. That's not okay, and it's really good that you were able to fill the gap left by that failure.

I'm reminded of the recent Scrubs reboot in which Dr. Cox routinely lambastes his interns or medical students as "killers."

 

[day_trippr]

I love [Scrubs]! So does my big time ER doc DIL, who says the series was totally on point.
I have all 8 seasons archived and have watched the entire collection end to end three times over the years.
I have no desire for episodic TV in general but for some reason I really dig that show

Cheers!

 

[fluketamer]

yes scrubs is on point becasue the writer based all the episodes on his medical school roommate.

two particular episodes that really felt like they were reading my diary was the pudding episode. pudding was like gold when we were residents. i understand why he stashed them all in his trunk.

that and the gyno girls episode. ill never forget when i found out the gyn attending threw parties every weekend and i asked if it was open invitation. i learned it was girls only. i was shocked but i have to admit intrigued also. lol. then when i saw the gyno girls episode it all made sense.
they were literally trying to recruit every week just like in the show.

no we are definately not perfect but its possible that what the doc meant to say (or should have said) is that the findings are non specific and may not be related to your current pain. unfortunately nowadays the time constraints of the ER due to overcrowding can result in ER docs only focusing on immediate emergent life threatening issues. its built into us . the most important thing in triage is to treat the worst first. (if viable) . this has made a lot of things relative like for example. if your spleen was ruptured he would have had a significant finding to give you. anything less doesnt really make him concerned.
i am not defending him or her just trying to give you another possible side of the story.
sorry for your current condition.

these days doctors are almost as hated as lawyers. we arent all that bad . i truly do what i do for the people i see not for the $

unfortunately , i definately cant say that about all my colleagues.

 

[user 246304]

yes scrubs is on point becasue the writer based all the episodes on his medical school roommate.

two particular episodes that really felt like they were reading my diary was the pudding episode. pudding was like gold when we were residents. i understand why he stashed them all in his trunk.

that and the gyno girls episode. ill never forget when i found out the gyn attending threw parties every weekend and i asked if it was open invitation. i learned it was girls only. i was shocked but i have to admit intrigued also. lol. then when i saw the gyno girls episode it all made sense.
they were literally trying to recruit every week just like in the show.

no we are definately not perfect but its possible that what the doc meant to say (or should have said) is that the findings are non specific and may not be related to your current pain. unfortunately nowadays the time constraints of the ER due to overcrowding can result in ER docs only focusing on immediate emergent life threatening issues. its built into us . the most important thing in triage is to treat the worst first. (if viable) . this has made a lot of things relative like for example. if your spleen was ruptured he would have had a significant finding to give you. anything less doesnt really make him concerned.
i am not defending him or her just trying to give you another possible side of the story.
sorry for your current condition.

these days doctors are almost as hated as lawyers. we arent all that bad . i truly do what i do for the people i see not for the $

unfortunately , i definately cant say that about all my colleagues.

Dr. - I cannot stress how much admiration and gratitude I have for good medical providers. One of the greatest sadnesses of my last 20 years is when my longtime nurse left practice a few years back, due to the war with covid and its cost, and her feeling exhausted in that she felt she was no longer giving care with today's paradigm. She's raising goats, bless her.

If I haven't had the experiences I've had, I think I'd be speaking from a very different position.

When we moved here in 2009, I became acutely ill; BP fell to 50/30 among other things. My best guess is our city lake, which in summertime can have high counts of various pathogenic species. I'd went swimming (though so did my son), and always wondered if I'd picked up a bug swimming unknowingly at a bad time for our area. Couldn't walk to the ambulance and they had to lift me in. ER doc was trying to prod me out, said I was good to go home but the nurse assisting was very resistant - and on the way out, unassisted and trying to walk, I collapsed twice falling to the floor. They put me in a wheelchair, and rolled me out to the car. The last thing I recall before coming to later was my family yelling my name over and over as I passed out, as the hospital staff member, whoever it was, tried to put me in the car. My family later told me my eyes had rolled back in my head and it looked like I had died and they were terrified, yelling at me to come to. The simple thing was that my tank was empty. Admitted, after several hours of normal saline (I think that's all it was), next day, I was basically recovered and released. Simple.

I'd had a winged scapula once before. The first time, sometime around '86 or so, without insurance and as a broke actor I sat up nightly in agony, in tears; the only relief, and it was minimal, is when I tied myself up as tight as possible sitting up in the chair. But it was always temporary and the pain came roaring on.

I'd tried to gut it out and the memory isn't perfect, but I believe I finally went to the Providence, RI ER. They surmise it was a viral infection of my thoracic nerve. To 2009, coming out of this acute episode described above, I could tell it was coming on again, for the second time, same side, as crazy as that seemed to me ("what are the odds?"). I went to urgent care to a physician who denied it, denying it even when I clearly demonstrated the wall test. The pain was excruciating. My GP ordered neuro, who immediately on completing, told me "I'm going to tell you what you already know - you clearly have a winged scapula." Latency was demonstrably evident.

To my central pain, it took me years of searching through many, many physicians who thought I was a lying malingerer. The GP I've now had since 2010 was the first to say, "Paul, what you have is frontier medicine. We just don't understand it well yet. We don't have answers to this, but we're going to keep trying."

That was literally the first time I'd been received as a legit patient presenting, and a compassionate and skilled physician admitted his humanness, and the limitations we all share. I've been with him ever since and wouldn't trade him, or the rest of my team, for the world.

And I know the cost COVID has been on front-line caregivers. One of the biggest reasons I seethe with such anger when we have deniers as we see even here, on this forum. I know what people such as yourself and other good people do, have done, and continue to try to do, day in and day out, despite all.

But I have learned through painful experience to know my sh&t. It seems to me, yesterday, that with a CT indicating an enlarged spleen, a low platelet count, and my presenting with pretty severe under-L-rib pain, one, telling me my bloodwork was clean, and two, with just these three things in place (spleen CT, low platelets, presenting with L rib pain - and I have more), at a minimum I should have been told "we've ruled out infection, or any hepatic involvement, but you do have an enlarged spleen, which can definitely be correlated with the pain under your L rib, and the low platelet count is also suggestive, possibly. We can't address that here, but that's definitely something you need to follow up with your GP," etc.

Right? "Eat more fiber?" I can't help but think of all the poor people who aren't as smart (or as experienced with the above history) as I am, who wouldn't even have thought to look at the CT and bloodwork results, much less understand them.

ps: I was a corpsman. I understand the exigencies of triage, which is in part why I mention in my first post, I get triage and waiting 6 hours, no complaints, and have complete compassion for what ER drs. and nurses try to do, under great duress.