Doctor double talk? Long rant!

[zibazinski]

We are going through this right now D H went in last Friday because his blood pressure was too low. While he was in there we were visited by two vascular surgeons who wanted to cut his foot off because he has a pressure sore that's healing slowly. Good grief! After refusing to agree to this procedure and telling them we were seeing a top vascular guy and also trying a cell regeneration from another doctor, you'd have thought I'd thrown poop in their faces. Because of his wonderful infectious disease doctor-that woman is awesome- DH's foot is not even remotely infected. I guess they wanted to show off for the new doctors of July. Finally after me being super advocate translated bitch, they called in the doctor our primary doctor wanted who took a look at it and said basically it's fine just ugly. . Agree with his assessment. Furious about the other nonsense. I told them as they were exerting their pressure that unless they could prove to me that DH was going to be dead in 24 hours, not happening and if I found out they got him to agree while I wasn't there, they couldn't pay me enough money to keep my mouth shut. I'm still trying to get a straight answer on his kidneys. I'm not winning so far but I'll get that answer.

[Lizard Queen]

Jul 23, 2015 20:52:15 GMT -5 @southernsusana said:

Do you run into doctors contradicting themselves like we do?

DH woke me up in the middle of the night on Monday to say that his blood pressure was too low and his chest was too tight.  We went to the ER and ended up staying in the hospital.

ER DOC: low blood pressure but kidney function is off.  Let's go to hospital.
Hospital cardiologist: We don't want to do catherization because the dye is hard on kidneys.  Let's just do an ultrasound right now.
Hospital vascular surgeon: Let's do a catherization.  Ok, no stent.  (They do that as part of catheterization if needed.)  Let's change your meds first and then do stent later if necessary.
Hospital vascular surgeon: Let's keep you until tomorrow to see if the dye has affected your kidney function.
Primary care doctor: You can go home today.  You don't have to stay until tomorrow.  Don't change your meds.
Hospital vascular surgeon: Silence.  We call to see if he wants to change meds.  He does.
Hospital cardiologist two days later: I sent the film to Uab's cardiologist.  You need a stent.

We just wanted to scream.  So I called and left a message at DH's regular cardiologist, with whom he has an appointment next week.  That was 9 a.m.  At 6:30 DH gave up getting a response.  The Great Man (and he really is a bigshot at UAB) was still there and answering his phone.

Great Man:  I know the UAB vascular surgoen (another Great Man).  I don't do stents; he does.  What is the question?

The question was we wanted to defer to Great Man's judgment.  He accepted that.  He told us to call back by mid-afternoon tomorrow if we hadn't heard from his office.  He would call the other Great Man (UAB vascular guy) and see what he said.  Meanwhile he was rather pissed that after lecturing me on how lucky I was to catch him after office hours, I told him I had called at 9 a.m. that morning and left a message.  He has office staff whose job is to return calls immediately.  

DH said he felt worse from just talking to all these guys!

There was a disagreement among the docs one of the times my mom was in the hospital last year for CHF.  It was confusing at first, but the floor doc in charge sat down and explained it to me.  It's a delicate balancing act with the kidneys/heart, for my mom at least.  

My dad had a quadruple bypass done in 98.  It could have been quintuple, but they went back later and did a stent.  It was still all scary to me, but a tiny fraction of what the bypass was.  He died of cancer in 2011, and played golf through the summer before.  I can't remember for sure, but I think it may have been an outpatient procedure.

[Lizard Queen]

9 Daaammmnn...I hope you get the answers you're looking for soon.

[zibazinski]

DH has heart caths every month and has no stents.

[teen persuasion]

Do we run into doctors contradicting themselves?  Yes!

I know I've mentioned before DH's fun stay in the hospital for possible heart attack a few years back.  He was taking firefighter 1, and the weather was unusually hot and humid on the day they geared up in full turnout gear with air tanks and masks to run up and down the training facility.  Not surprisingly, he was a little short of breath and had some chest pain.  Fellow EMTs checked him out, and suggested he go in to the hospital "just in case".  "Short of breath" and "chest pain" are code words for heart attack, so the hospital begin giving him every heart related drug and treatment possible, regardless of how unnecessary they were while testing his blood enzymes (which would confirm or deny heart attack, but only over time).

The ER doc says it doesn't look like HA, but sends his EKG to Important Cardiologist, who doesn't like the look of the EKG, but can't explain why.  His enzymes are fairly normal, until one spikes.  Next one is back to normal - this is not the way it works if a HA, it should increase steadily, it never drops back!  Obviously (to everyone else) that one test was in error, possibly someone else's, but Important Cardiologist doesn't like it, can't explain why.

Finally they transfer him to a different hospital for an angiogram.  Result: his arteries are clean, clean, clean.  Angiogram doc says DH won't have a HA before he is double his current age.  Yea!
 
When DH calls to follow up post-op, angiogram doc says he must follow up with Important Cardiologist instead.  I went along.  She still insisted he'd had a HA!  That EKG, she couldn't explain why she didn't like it, it looked like someone who had apnea.   . We'd told them repeatedly that he had apnea and used a CPAP machine (at the time), obviously they'd paid no attention.  She went on to prescribe aspirin, cholesterol lowering drugs (his cholesterol is fine, he'd just had it tested for the fire hall), nitroglycerin, warn against eating eggs, had him come back for a stress test before she'd sign off on returning to duties...

It was ridiculous.  Her recommendations were dated, and absolutely unnecessary.  But her diagnosis is still there, despite the clean angiogram.  Everyone deferred to her, because she's the Important Cardiologist.

[Jaguar]

Oh my gosh where the hell do I begin.......most of you know I'm a hematology research patient, the run around I got from my doctors when I had that lung issue, cause it turned out NOT to be lung cancer in 2013 was epic. Doctor speak that's a whole other language.

The Cat Scan is next Monday, I'm still dealing with this shit.

[Shooby]

Medicine is often a matter of opinion. Educated opinions coming from differing perspectives. In my experience, if you want surgery, then go see a surgeon with your problem. If you don't want surgery , then go see an internal medicine doctor. They all have a particular medical hammer and they like to nail it according to their specialty. And, as a patient, you carefully weigh and consider their advice but ultimately, you need to make your own decisions.

[NomoreDramaQ1015]

I understand medicine isn't an exact science but I also understand it from a patient perspective.  My grandfather's terminal diagnosis was all over the map.  If I am getting anywhere from 2 months to 2 years that makes it very hard to make decisions in regards to my care and potential treatments.

He ended up in the ER shortly before he died he had a perforated bowel.  The ER doctor wanted to rush him into surgery to remove his colon.  WTF?  The man has a terminal cancer diagnosis and can barely respond you are going to perform major surgery?!

Fortunately the surgeon had common sense.  When he came down for the consult he tore the ER doctor a new one.  He said he had no business calling in a surgeon, my grandfather would never survive and it would be beyond cruel to subject him to that in his current condition. 

[Shooby]

There are treatment options. When my mom was ill she was rushed for emergency open heart surgery. SHe survived it but never really recovered. And, as she deteriorated, then yes, she wound up back in the hospital and they wanted to life flight her to another hospital. That is where I stepped in and said No, that is enough. And, you are given options by doctors. That doesn't mean you avail yourself of every treatment. It is your choice to say yes or no. You gather information from your doctors and try to make the best individualized decision for you. That doesn't make the other doctors "wrong".

[Deleted]

Right now I'm 62 and healthy (thank God) and DH has issues but we trust his doctors and haven't had any problems.  I dread the day when I get dragged into an ER for something- it's basically a license for them to send every specialist they have in for a consult and bill you for all of them (and all of the procedures/meds they recommend).

A couple of weeks ago my mother was in the ER.  It was Monday and she hadn't had a decent meal since the previous Friday when she had a taco salad at a Mexican restaurant.  She'd had bad diarrhea but that was gone and was just feeling sick and had various chest pains.  They did a CT scan and announced that her gall bladder was full of sludge and needed to be removed.  They admitted her and a day later she noticed that everyone who came into her room was wearing hazmat garb and the cleaning lady would scurry in, clean, throw her hazmat clothing into a bin and scurry out as if she might catch ebola.  When a nurse refilled Mom's IV, Mom asked what was n it.  "Medication for your salmonella".    And that was the first Mom heard of it.  Dad, who had been there, kissing her, holding her hand and probably using the bathroom in her room, didn't know, either.  Worse, the surgeon who was supposed to remove her gall bladder hadn't been informed.  When he found out they cancelled the surgery.

They kept her another day till they were sure she was recovering from the salmonella.  Dad didn't get it and Mom still has her gall bladder.  The source of the salmonella was likely the Mexican restaurant; my sister the doc says that her case will be reported to the Board of Health so they can investigate.

[zibazinski]

That's why a patient needs an advocate at all times. I was so sure I had nightmares about them just lopping DH's foot off while I wasn't there. He signs anything without reading it like a GD fool even though I have said sign NOTHING unless I'm there. His foot is not infected and there's no need to lip it off other than to show the new residents an amputation. WTF. I'm glad your experience has been they give you suggestions, ours have been practically orders and God forbid you say NO. They actually sulk which makes the nurses laugh. I threatened to sue and no amount would have shut me up if they did anything other than stabilize his BP which is what we went in for.

[Abby Normal]

I knew someone for many years (through dog agility) before I found out that she was a doctor.  A neurologist.

SHe told me that people forget that doctors are human.  All you can do is get their opinion and make your own decision.  That is why they suggest getting a second opinion. She also told me that I should always ask before any type of procedure if they are taking "any kind of medication or substance that may inhibit their ability to perform" the procedure.
Doctors can be on pain meds too you know. 

[teen persuasion]

Jul 24, 2015 10:24:07 GMT -5 Abby Normal said:

I knew someone for many years (through dog agility) before I found out that she was a doctor.  A neurologist.

SHe told me that people forget that doctors are human.  All you can do is get their opinion and make your own decision.  That is why they suggest getting a second opinion. She also told me that I should always ask before any type of procedure if they are taking "any kind of medication or substance that may inhibit their ability to perform" the procedure.
Doctors can be on pain meds too you know. 

 Seriously?  If I didn't ask, they'd be fine operating while their ability to perform is possibly inhibited, but asking will cause them to have a return of conscience?  Yeah, I know, I've watched House, but I seem to recall that Dr. House wouldn't have let that question stop him, either.

P.S.  When DH was in the hospital, he told me he felt like he was in a House episode.  All of the crazy heart related drugs they were giving him "just in case" were causing side effects, so they'd give him more drugs to fight the side effects...

[Abby Normal]

Jul 24, 2015 10:59:25 GMT -5 teen persuasion said:

Jul 24, 2015 10:24:07 GMT -5 Abby Normal said:

I knew someone for many years (through dog agility) before I found out that she was a doctor.  A neurologist.

SHe told me that people forget that doctors are human.  All you can do is get their opinion and make your own decision.  That is why they suggest getting a second opinion. She also told me that I should always ask before any type of procedure if they are taking "any kind of medication or substance that may inhibit their ability to perform" the procedure.
Doctors can be on pain meds too you know. 

 Seriously?  If I didn't ask, they'd be fine operating while their ability to perform is possibly inhibited, but asking will cause them to have a return of conscience?  Yeah, I know, I've watched House, but I seem to recall that Dr. House wouldn't have let that question stop him, either.

Of course not.  But if they say " yes i'm taking xxx" you can choose to have the procedure, postpone or ask for another dr at later time. If they say no, and something is screwed up and you find out that they were on something it helps your case. 

When my mom went in for her knee replacement I asked the Surgeon before hand.  He looked right at me and said " Excellent question.  No".

[zibazinski]

I'll have to remember that.

[The Walk of the Penguin Mich]

Yeah, I have been there.

When I walked into the ER in Seattle with a picc line, medical records and no meds, I totally screwed up the ER doc's life for the next several hours.  I had a diagnosis and needed someone to do something about it (3 days before Christmas).

The next day (I was admitted), my picc line had been cleared and was running, I was receiving IV antibiotics and was presumably stable.  The hospitalist was going to release me home with home health providing antibiotics and I was to contact my regular orthopedic surgeon to have the hip removed (when he returned from London in 3 weeks).  The day I was supposed to be released, the infectious disease doc put her foot down.  I wasn't going anywhere other than cardiology, radiology (again), nephrology and pulmonary medicine.  She wanted my hip out NOW, not in 3 weeks.  I had been admitted into the hospital via a shoulder orthopedic surgeon, not a hip one so a second OS was called in to presumably remove my hip NOW.  Hip surgeon did not want to remove my hip NOW, he saw no reason as I was on antibiotics.  So the hospitalist deferred to the ID and OS and they disagreed with each other.  The OS thought I had a chronic infection that I had had for months (he later admitted it was acute) and there was no need for surgery NOW.  The ID doc saw the infected hip as seeding all my organs and potentially causing damage to my heart, lungs (it did seed my lungs), spine and kidneys as the hip dumping out bacteria faster than they could put the antibiotics into me.

So the whole thing got dumped in my lap.  I knew my hip was not a chronic infection and understood the ID doc's concern.  The hip had the potential to cause irreparable damage to vital systems.  I chose, and the next day I went into surgery to get it removed.  I would have preferred my regular OS had done it, and I was also left with the problem in that once my infection had cleared, I needed another OS to finish up the work in several months.  Doctors (I discovered) are loathe to finish up someone else's job that they started.  Fortunately, my regular OS was ok with it but I spent 3 weeks anticipating that he wasn't going to finish the job up and was going to have to go back to the surgeon who took out my hip to beg him to finish it up, with no guarantee that I'd be successful (he had told me he couldn't take me on after taking out my hip).

IME, it is pretty important to get someone overlooking the whole process, but it is a really fine balance between doctors when all of them need to look for one specific thing and they have blinders in regards to everything else.

[973beachbum]

Jul 24, 2015 11:21:34 GMT -5 Abby Normal said:

Jul 24, 2015 10:59:25 GMT -5 teen persuasion said:

 Seriously?  If I didn't ask, they'd be fine operating while their ability to perform is possibly inhibited, but asking will cause them to have a return of conscience?  Yeah, I know, I've watched House, but I seem to recall that Dr. House wouldn't have let that question stop him, either.

Of course not.  But if they say " yes i'm taking xxx" you can choose to have the procedure, postpone or ask for another dr at later time. If they say no, and something is screwed up and you find out that they were on something it helps your case. 

When my mom went in for her knee replacement I asked the Surgeon before hand.  He looked right at me and said " Excellent question.  No".

I know a man who grilled his surgeon about what he did the night before.   The doctor looked startled and then laughed and said "no I wasn't out partying last night.   I was in bed at 10 pm".  His wife actually got mad at him.  His answer was he wanted a surgeon who was well rested, not one that was hopped up on a bunch of red bulls.

[milee]

Jul 24, 2015 11:41:54 GMT -5 The Walk of the Penguin Mich said:

IME, it is pretty important to get someone overlooking the whole process, but it is a really fine balance between doctors when all of them need to look for one specific thing and they have blinders in regards to everything else.

We're in the beginning stages of going through this (different experts recommending different things) with my son's scoliosis. Even though I'm normally very comfortable researching, making independent decisions and going with what's best for my family and then not worrying about what others say... there must be some part of me that still views doctors as de facto experts. Because even when one (or several) expert docs have consistently said one thing, it's still an awful feeling as a patient or mother when you choose to follow their recommendation and can still hear the dire warnings of the other experts(s) about how what you are doing is the exact wrong thing. Seriously, parental guilt is awful.

I do understand that medicine is not a black and white science and it's very understandable that different docs will have different opinions based on not only their specialty but their own experience.  But as a patient it would be wonderful if there was less ego involved and that instead of all the different docs making their pronouncements in an isolated silo leaving you to sort out what to believe, that the docs were willing to do conference calls or other discussions to at least discuss some of their differences.  Even if the docs still didn't come to agreement, as a patient, listening to those conversations would enable you to have more insight on the details of why each thinks the way s/he does and how the others react, agree or disagree with it.

As it is, many of the top expert docs - surgeons especially in our experience - aren't interested in doing any further discussion with docs that disagree with them.  It's very much a "my way or the highway" opinion - take it or leave it.   

 

[zibazinski]

Amen. After the two surgeons that wanted to cut his foot off were told "NO," they sulked. 

[milee]

Jul 25, 2015 10:23:31 GMT -5 zibazinski said:

Amen. After the two surgeons that wanted to cut his foot off were told "NO," they sulked. 

Since I'm trying to elicit cooperation and also think that people get better care in general if they don't have an adversarial relationship with the healthcare providers, I'm tactful in the discussions.  Mostly I'm trying to understand the reasoning behind their position even if their position is that the other doc is an idiot.  The more details they can give about why they have a particular opinion, I can understand if it is more or less relevant to our particular situation.

For example, my first son was born about a year after that infamous and now thoroughly debunked and retracted Dr Wakefield "study" published in the Lancet that claimed a link between vaccines and autism. There was a lot of fear about autism but little data.  Sleep deprived parents of small children already dreaded the countless "well child" visits in which their kid was stuck with 3-4 needles and now they were also worried that they were giving their kids autism as well.  When some of my friends asked their doctor about the autism/vaccine link concern, their doc was dismissive, scoffed, told them not to worry about it, end-of-discussion - less than 10 seconds and it was "case closed."  While some of those parents nodded, trusted their doc and went with that, others came away thinking that the doc didn't respect them, didn't seem informed, might be part of this implied Big Pharma/Big Medicine conspiracy or was just hopelessly out of date... and those parents sometimes ignored the doc's advice to vaccinate.  My doc was wonderful.  She didn't act like we were idiots for asking (like some of my friend's docs did), she pointed out a few flaws in the Wakefield "study", pulled out a stack of well designed studies that showed no vaccine/autism link and said she understood our worry but that she was a parent herself, had done the research and was vaccinating her children.  I trusted her, agreed with her and we vaccinated.

Unfortunately, so far, we're not getting that same type of response from the -so far few, so this may change as we talk to more - docs we have talked to about my son.  Perhaps because we've started with some of the top "experts".  They very much want to pronounce the only solution and any questions about data, alternatives, possible complications, etc. are met with an impassive shrug and a "do what you want.  This is my advice" with no further discussion.  It's tough because it's not that I necessarily disagree with the advice, I just want to understand the basis for it more so I can understand if it's the best fit.

[The Walk of the Penguin Mich]

I do understand that medicine is not a black and white science and it's very understandable that different docs will have different opinions based on not only their specialty but their own experience. But as a patient it would be wonderful if there was less ego involved and that instead of all the different docs making their pronouncements in an isolated silo leaving you to sort out what to believe, that the docs were willing to do conference calls or other discussions to at least discuss some of their differences. Even if the docs still didn't come to agreement, as a patient, listening to those conversations would enable you to have more insight on the details of why each thinks the way s/he does and how the others react, agree or disagree with it.


Absolutely.  When I was first admitted to the hospital in KY with the hip abscess, the whole process there was a HUGE battle.  Once the abscess was found, the orthopedic surgeon wanted to do a hip aspiration.  However, to get to the hip to do the aspiration, they would have had to stick a needle through the center of the abscess - so if my hip was not infected, the person doing the aspiration would infect my hip.  So for 3 days, I did battle with the OS, his residents and every other doctor other than radiology.  The radiologist was the only one who understood my concern.  The surgeon was pissed, the residents did everything to make me change my mind, including some things that were less than ethical.  It was honestly a nightmare.

The radiologist came and talked to me and I spoke to him and told him my concerns, that he said WERE valid and I was right to be concerned.  So he made a deal with me in that he wanted to do advanced imaging and he would not stick a needle into my hip unless he saw something in the images that could be infection.  He said that if he did not see anything, not only would he NOT aspirate my hip but he would tell the OS and his flunkies to back off.  I agreed to this.  Unfortunately, imaging DID show something.  He aspirated and you could tell from the aspirate that it was infected.

Then my next battle began.  The OS wanted to take the hip out NOW.  Only problem was that I was in KY with no help whatsoever.  Not only that, this hospital had an abysmal record of infection control (I was terrified I'd wind up with a noscomial infection that would not have been quite as susceptible to antibiotics) AND my 4 day experience demonstrated that my access to pain control would be sketchy at best (I had to do battle to get my prescribed pain meds on time and when they weren't given on time, my pain shot through the roof and I needed morphine too.  When I needed the morphine, I was told that I was just looking for a fix.).  Uh, no.  I knew if I let them cut on me, I'd be screwed.  The surgeon would cut on me, and after a week I'd be booted out to rehab.  Only problem is that I had 90 days of rehab available with my insurance and it took about that to clear the infection (and I would be without a hip).  Winding up with the second hip being infected, I'd have been totally screwed as clearing that infection was another 3-4 month process where I was without any hips. 

The surgeon tried to browbeat me, and in the meantime I was trying to contact my OS in WA.  But he was on his way out of town to London and his PAs were not sufficiently skilled to accept me and treat me.  The old OS that I saw (who put in my first hip) saw my post on facebook and contacted me and wanted to know what was going on.  He had given me his personal cell # after my surgery 6 years earlier and I kept it around  He was no longer practicing, he was riding a bike for a sabbatical for a couple years.  I told him my problem and he said I was doing the right thing.  I wound up checking myself out of the hospital against medical advice (at which point, the nurse tried to browbeat me and tried to scare me that I'd be sent to collections as my insurance wouldn't pay for the 9 days I had been there).  TD picked me up, we made arrangements to leave, packed up me and the cat, got on a plane and left for WA.  We went directly to the ER of the hospital that my old OS recommended, who had one of the better orthopedic programs as I couldn't get my regular OS, I know that those hip surgeons here were good too.

I went into this with a lot of advantages.  I had a medical background and am a microbiologist so I knew what was going on in me.  I knew my rights, and I knew my insurance policy.  I had contacts and I had researched hip surgeons thoroughly when I was looking for my first surgeon.  I was a member of a fairly active hip group and knew what was needed if a hip was infected as I walked through the experience with someone else who had the problem.  When I look back, I wonder how I had the energy for all these battles - but in every step of the process I was an active participant in my treatment.  

Interestingly, my treatment in KY (other than the radiologist) was more "you're the patient and we know better what to do with you than you do so do it".  My treatment in WA was more of a discussion as to "this is what the problem is and these are our choices, what do you think?".  Once the decision was made, I let my doctors do what they thought would work best.  After the decision to have the first excision, the only other time I questioned things was that I wanted spinal anesthesia and sedation (better pain control and you come out of it easier) for my first excision and the anesthesiologist balked.  His comment was that I was septic and there was the very small chance that he would introduce bacteria into my spinal cord while putting the needle in for the spinal.  I didn't need that on top of everything else, and I agreed with him that his choice was better.

[zibazinski]

This is why my aunt who was a nurse will never go into the hospital without someone being with her.