Bad experiences with medical professionals

[RhaenysBee]

Well I don’t know if I can lay the blame on one particular person, but this was probably the most horrible medical experience I had. 

I was supposed to get two malignant breast lumps removed as well as a sentinel lymph node today at 8:30. Yesterday I got the hospital and the head nurse told us at check in that if anybody has upper respiratory symptoms or an oral herpes sore, come forward, I had neither, but I do have a healing mouth ulcer, so I thought I would mention that. The nurse said okay, she will get the anesthetist check it and my escort should wait for me in case I was sent home. She did check it, she said it was fine, I should just keep treating it with the same stuff I’ve been using. Cool, great. 

5 hours of waiting for a room, isotope injection and the all kinds of prep, isotope marking of lymph nodes, blood pressure, quick iv, bit of tranquilizer and a  cigarette smoke smelling gentleman rolled me down to the operating theatre while I was shaking like a leaf because it’s cold down there and the marking too long so the tranquilizer didn’t have time to kick in yet.

We go in, they tube and wire me up, secure my right arm upside for the cut and all. Anesthetist comes in, asks me the upper respiratory questions, I again repeat I have that mouth ulcer but they said it was okay. Who said? Well how the F do I know, the anesthetist lady on the 3rd floor who checked it. Weeeellllll, she will get the head anesthetist, because weeeeellll. Lady gets there, they show her my ulcer, they keep asking who said this was okay, what she looked like, what kinda doctor she was. Well the answer is I have no damn idea because on one given day you meet ten different doctors for 2 minutes each, most of them don’t say their name and if they do you immediately forget because it’s all a blurry whirlwind and you don’t think you need to remember. So I’m lying there already crying, six people leaning over me, the head anesthetist is saying it’s okay it’s all in my best interest and this is  the smaller evil because two weeks won’t matter for my illness and the risk of viral pneumonia after intubation is worse. I’m really crying so they give me more tranquilizer in the iv then they get all the tubes out and unwrap my arm and roll me right back.

I’m not even sure who and how put me back in my bed, they gave me salt water and tried to comfort me and said they would prep the release papers because I can go home. without my surgery. To fuck around for two weeks and not knowing how this thing spreads in me. To come back and repeat all the prep and isotope marking. The surgeon came up, he was fucking livid, he said he can’t see anything problematic in my mouth and an ulcer is not herpes, it affects the mouth tissue not the entire body but he’s responsible for the operation itself not the green lighting of it and can’t override the anesthetist and he is so sorry. 

They got all the needles out and I packed up and my dad was going to pick me up. but I wasn’t going to leave without knowing who told me my mouth ulcer was fine. So I didn’t leave the nurses alone and I also wanted the head nurse to confirm that at least I myself did everything right and she was really sweet and they checked the records to figure out who this person was. Then the surgeon told me he would try to schedule me for 14th Feb but we will confirm over the phone the details. Everybody was pissed and there isn’t really one person to point the finger at, but the result is the same. 

They didn’t my lumps out and being rolled in and then right out of the operation theatre is fucking traumatic and I cried and raged and slept and I’m still messed up psychologically. But at least I could call my therapist and re-book my appointment this week which I can make after all. I’m so sad and so upset. 

I did get a pink ribbon pin as consolation from the nurses and it’s little but some comfort how pissed the head surgeon was who is the one doctor in all this ride that I trust enough professionally that I believe he can get me out of this. 

 

oh and I still don’t know if you can get a surgery with a mouth ulcer or not because professional opinions seem to vary. My biggest question is, if this is a risk big enough that they would untube and unwire me minutes before surgery, how is it possible I was the only person who brought this up. Like, I’m paranoid and they said herpes sores, I thought oh snap what about a mouth ulcer. About mouth ulcer in particular, absolutely NOBODY asked me. So what if I weren’t paranoid and didn’t bring it up myself. I don’t get it. I truly don’t. Which makes it awfully difficult to accept and process. Did I say I’m upset and sad?  

Edited January 31 by RhaenysBee

[Wade1865]

After sending me to Sam Houston to get my broken eyeball fixed, I returned home with an obvious, miserable looking mass of gauze and cotton over my eye.

It drew sympathy from others, but especially the flight stewardess, who was surprisingly concerned. At one point while assisting me, something heavy dropped, and jumped to help me find whatever it was. As we were looking on the cabin floor, I said my eyeball fell out, hahaha. She ignored me the rest of the flight.

[Fragile Bird]

@RhaenysBee just trying to ease your stress a little, when I had my diagnosis I was reading a number of medical sites and one site pointed out that while your automatic desire is to have surgery Right Now Immediately, a few months between diagnosis and surgery is probably fine, I was diagnosed at the end of January and my surgery was in mid April (height of Covid, 2021). Mid February is fine, you’ll be okay. 

[RhaenysBee]

7 minutes ago, Fragile Bird said:

@RhaenysBee just trying to ease your stress a little, when I had my diagnosis I was reading a number of medical sites and one site pointed out that while your automatic desire is to have surgery Right Now Immediately, a few months between diagnosis and surgery is probably fine, I was diagnosed at the end of January and my surgery was in mid April (height of Covid, 2021). Mid February is fine, you’ll be okay. 
/cdn-cgi/mirage/3079d70471035a0f69517f12d6b3febb59c8bdb116175430da4eef3bf34d12ea/1280/https://asoiaf.westeros.org/uploads/emoticons/default_grouphug.gif

Thank you.   I more or less know that the delay isn’t going to impact the severity or the progression of the illness itself. It’s really the psychological side. The cigarette smelling gent was joking around about how easy a morning he was having because I’m so tiny to lift, my roommate was saying she would see me an hour, I was mentally settled in. I was telling myself in the elevator that it was gonna be done and dusted in an hour, that I just had to get through the next ten minutes and I would fall asleep and I would wake up and it would be over. I was so so close, I was right there, literal minutes from getting through it and I was torn out of that. Like when you go to a restaurant and order and wait for a table and wait for your meal and you’re so hungry and then they bring your plate to the table but don’t give it you, instead it’s sorry but please go home. 

That and the trust issue. I remember I still was crying after the second tranquilizer and asking the anesthetist nurse how I was supposed to know that something is okay if someone tells me it’s okay. And how am I supposed to know they ask the right questions when all this stuff unfolded only because I mentioned it AGAIN even after someone told me it was fine.

As you can see I’m still processing I apologize for the rant, worse things happen and worse thing could have happened to me too. It was just a lot. 

[Fragile Bird]

15 minutes ago, RhaenysBee said:

As you can see I’m still processing I apologize for the rant, worse things happen and worse thing could have happened to me too. It was just a lot. 

Not a rant, not at all. If that happened to me the day of my surgery I would have been very upset as well.

What does concern me, though, is you being alone. My brother drove me to the hospital the morning of the surgery and he and a girlfriend of mine picked me up at the end of the night. After all, you’re anesthetized and out for hours, and woozy when you wake. I went to my girlfriend’s house and she looked after me until the drain came out, about 10 or 12 days. It’s going to hurt, moving your arm will hurt. And I’m pretty sure you’ll have a drain that drips into a bag that you’ll have to empty and measure the contents of, until the daily result is low enough they can remove the drain, which may hurt or just feel appallingly weird. You may be taking heavy duty drugs for pain.

[RhaenysBee]

12 hours ago, Fragile Bird said:

Not a rant, not at all. If that happened to me the day of my surgery I would have been very upset as well.

What does concern me, though, is you being alone. My brother drove me to the hospital the morning of the surgery and he and a girlfriend of mine picked me up at the end of the night. After all, you’re anesthetized and out for hours, and woozy when you wake. I went to my girlfriend’s house and she looked after me until the drain came out, about 10 or 12 days. It’s going to hurt, moving your arm will hurt. And I’m pretty sure you’ll have a drain that drips into a bag that you’ll have to empty and measure the contents of, until the daily result is low enough they can remove the drain, which may hurt or just feel appallingly weird. You may be taking heavy duty drugs for pain.

Oh no I’m not alone, gladly. My dad drove to the hospital on Monday morning and I was supposed to get out on Thursday because they keep you in for 48 hours to give IV pain meds and just keep an eye on you. Then I was supposed to go to my mum’s so she could provide food and help me with whatever my arm wouldn’t allow in the first couple days. Instead, I ended up calling my dad yesterday morning and he drove me to my mum’s to have a mental health day and dog cuddles before I go on with my life.

Sleeping helped a lot and I’m now a functional human with a rational mind again. Well. May this be the largest and hardest hurdle I have to face on this journey and I shall be grateful to my core. 

[BigFatCoward]

I have a relatively small issue, believed to be a mortons neuroma in my foot, it annoys me and causes some discomfort but doesn't impact my life majorly.  Every person I've dealt with in the NHS has been top class, however the injury happened on Christmas eve 2 years ago, and i have only now gotten to the point after various ultra sounds, xrays, MRI's etc that they can give me the injection I need, scheduled for august.  

2.5 years+ years from injury to addressing the issue, the underfunding of the NHS is a fucking tragedy.  

On the plus side i can't do real police work so i haven't had to leave my cosy office for quite some time and deal with any wrong uns.  

[Madame deVenoge]

@RhaenysBee - I am so very sorry to hear of this. What absolute bullshit of them to do. Unbelievable. They should have *listened to your surgeon* for Pete’s sake. I am incandescent with rage on your behalf.

I’ve never been asked about “mouth ulcers” before surgery. The anesthetist asks about any loose teeth or dental implants and before you know it, I’m out cold before I can reach “9” counting backwards from 10.

Those fuckers.

[Raja]

Oh man, this stuff is so bad for patients - in STAT Denied by AI: How Medicare Advantage plans use algorithms to cut off care for seniors in need

Quote

An algorithm, not a doctor, predicted a rapid recovery for Frances Walter, an 85-year-old Wisconsin woman with a shattered left shoulder and an allergy to pain medicine. In 16.6 days, it estimated, she would be ready to leave her nursing home.

On the 17th day, her Medicare Advantage insurer, Security Health Plan, followed the algorithm and cut off payment for her care, concluding she was ready to return to the apartment where she lived alone. Meanwhile, medical notes in June 2019 showed Walter’s pain was maxing out the scales and that she could not dress herself, go to the bathroom, or even push a walker without help.

It would take more than a year for a federal judge to conclude the insurer’s decision was “at best, speculative” and that Walter was owed thousands of dollars for more than three weeks of treatment.

Opaque as fuck algorithms designed by these insurers is not great.

Quote

Behind the scenes, insurers are using unregulated predictive algorithms, under the guise of scientific rigor, to pinpoint the precise moment when they can plausibly cut off payment for an older patient’s treatment. The denials that follow are setting off heated disputes between doctors and insurers, often delaying treatment of seriously ill patients who are neither aware of the algorithms, nor able to question their calculations.

I look back to my health policy classes where Health Policy & Management programs are churning out 100s of graduates to go work at these insurers - because that's where the money is - and you realize that the people making these decisions have zero idea of the reality in a hospital.

[Aemon Stark]

On 3/14/2023 at 6:10 PM, Raja said:

Oh man, this stuff is so bad for patients - in STAT Denied by AI: How Medicare Advantage plans use algorithms to cut off care for seniors in need

Opaque as fuck algorithms designed by these insurers is not great.

I look back to my health policy classes where Health Policy & Management programs are churning out 100s of graduates to go work at these insurers - because that's where the money is - and you realize that the people making these decisions have zero idea of the reality in a hospital.

This sounds like the Star Trek Voyager episode "Critical Care" where an "Allocator" assigns each patient a "Treatment Coefficient" based on their perceived value/status in society and rations (or lavishes) treatment accordingly. What an age to live in. 

[RhaenysBee]

So I had an appointment today. I called this young man two weeks ago so he would tell me what the hell this new test they want to do is. He told me on the phone that he can’t tell that me because that’s what the consultation is for. Today, after I waited for an hour for him, he summarized in 10 minutes what this test is, and made me sign a paper. For the motherfucking heavens, I could have signed this paper two weeks ago and have the results by now, because lo and behold, this test consists of signing a paper and sending my extracted tumor to a US lab. young man, if you only just told me this on the phone in five fucking minutes we would have a result by now. 

The young man also couldn’t tell if I should get a CT. How am I supposed to trust his opinion on whether I should get chemo or not and whether I should quickly run and freeze my eggs, because I might get chemo which might help. For crying out loud. 

[thgrlwthcurushar]

I don't know if any of my experiences have been bad actually....overall, experience one after the other leads me to believe I can do better for real and for realer, so they must be totally working. I am speaking about my psych docs. Now, I may scream and yell when I get home that these docs are not working out but I say that nearly every day and for the most part their medicine has been working out so I am just lying to myself. I haven't had one single bad experience with a medical professional and I'd like it to stay that way.

There are times when I believe they are lying though. I totally think there is some part of their doctor degree that allows them to ask questions to test a person's mentality. Is this true? If not, what in the world is that? That seems serious.

[Raja]

Not strictly related to this thread, but found this very very interesting from a public health point of view - Imo, his point about safety net I totally agree with, in addition to having regular primary care doctors and insurance in general. That it holds true for most income distributions is fascinating.

[Madame deVenoge]

19 hours ago, Raja said:

Not strictly related to this thread, but found this very very interesting from a public health point of view - Imo, his point about safety net I totally agree with, in addition to having regular primary care doctors and insurance in general. That it holds true for most income distributions is fascinating.

Um, I hate to say this, but maybe strip out death by firearms?

As much as I do support the second amendment, my very strong suspicion is that a lot of this is due to guns in the US, whether by suicide or homicide.

[Raja]

57 minutes ago, Chataya de Fleury said:

Um, I hate to say this, but maybe strip out death by firearms?

As much as I do support the second amendment, my very strong suspicion is that a lot of this is due to guns in the US, whether by suicide or homicide.

Yeah, I think some of it could be that. But to see such a consistent trend across the income groups makes it me think maybe it's not only that?

Krugman had a thread saying there is a  lot of regional variation, where people in CA would have life expectancies closer to that of England ( and we should say that england is probably behind lots of western europe and also South east asia, if we compared those, I think things would look worse)

He had a piece that looked at gun deaths being taken away, and some of it went away, but a lot of it remained

 

[Madame deVenoge]

3 hours ago, Raja said:

Yeah, I think some of it could be that. But to see such a consistent trend across the income groups makes it me think maybe it's not only that?

Krugman had a thread saying there is a  lot of regional variation, where people in CA would have life expectancies closer to that of England ( and we should say that england is probably behind lots of western europe and also South east asia, if we compared those, I think things would look worse)

He had a piece that looked at gun deaths being taken away, and some of it went away, but a lot of it remained

 

I took a look at the entire article. Yes, I was right - it’s gun deaths (primarily), followed by opioid overdoses, and dangerous driving. Remember, life expectancy at birth is different from how long someone will live if one makes it to, say, 25. 

The second set of graphs is a bit disingenuous, IMO, because it doesn’t plot against income, as did the first graph.

Look, the US has many problems and many faults. But, if one is lucky enough to be in the top 10% or 5% income distribution in the US…it’s not a bad life. In fact, it’s pretty damn awesome. And we really do have the best health care in the world, if one can pay for it. 

Edited April 2 by Chataya de Fleury

[Zorral]

1 hour ago, Chataya de Fleury said:

if one is lucky enough to be in the top 10% or 5% income distribution in the US…it’s not a bad life. In fact, it’s pretty damn awesome. And we really do have the best health care in the world, if one can pay for it. 

And the rest of us pay for you all and can go to hell.

How different is this from the so-called 'developing countries'?

[polishgenius]

5 hours ago, Chataya de Fleury said:

And we really do have the best health care in the world, if one can pay for it. 

 

So you don't have the best health care in the world.

[Raja]

7 hours ago, Chataya de Fleury said:

it’s not a bad life. In fact, it’s pretty damn awesome. And we really do have the best health care in the world, if one can pay for it. 

I think the discussion regarding 'best healthcare system in the world' misses the mark,  imo the issues are wider including the lack of safety net and public policy & access - with all 3 being wrapped up in the social determinants of health.

Though it's certainly seems an American instinct to proclaim 'x in our country is the best in the world', which I find quite odd.

 

[BigFatCoward]

Even if you can afford the absolute best healthcare, there is no guarantee that the insurance companies aren't going to try and wriggle out of it.

With free healthcare that's not a problem. I'd rather take Norwegian state provided healthcare than the most expensive US one.