Conflicting Info Between Doctors - How Do You Handle?

[TOBEY32]

When instructions differ between types of doctors?
When a nurse advises one thing and the doctor another?
When you have to see another doctor in the same office because yours wasn't available (and his advise differs)?

Doesn't always happen, but when it does (yesterday at my kidney appt) it's confusing and disheartening.

David

[Dirty Don]

David...YOU are the employer, it's YOUR life & body, YOUR time & money...my tendency is to 'make' them get it straight by 'telling on' each & every one of them...such a brat I can be. BUT, it's for my own good...I don't know you at all, but 'assertive/aggressive' behaviors w/ a touch of common decency here is what gets them cooperating & sharing & talking with one another. And, if that doesn't do it, I'm outta there, and seriously looking for help elsewhere that is conducive to my getting better, in all facets of my life. Confusion & disheartening does not set well with the patient at any time...you need clear info, not opinion...you need proactive & uplifting help, not internal medicinal points of view...best of luck...keep up the good fight...

[JanW]

What Dirty Don says -- you have to ask the docs to clear it up amongst themselves and get back to you. If you know that the information conflicts with what the first doc says, ask for clarification right on the spot.

[Lightwarrior]

When instructions differ between types of doctors?
When a nurse advises one thing and the doctor another?
When you have to see another doctor in the same office because yours wasn't available (and his advise differs)?

Doesn't always happen, but when it does (yesterday at my kidney appt) it's confusing and disheartening.

David

My initial response is to always trust the nurse first (I'm a nurse so take that with a grain of salt) seriously, is the nurse a registered nurse or an office assistant? Often people call anyone in a doctors office in scrubs "nurse". Make sure you are taking medical advice from a RN. I am an ICU nurse and I see this all of the time, each specialty has an opinion and the patient/family are left confused. One of the things I do is to have the patient/family ask for a family meeting. If you can get all of the docs in a room at the same time you can get your questions answered and if the RN is there she/he can interpret for you to put medical jargon in regular language.

In your example I would make sure that I write down my questions and then I would ask your regular doc, the one you trust the questions. Ask why there were different answers. You need to be clear on what you should do and why. Good luck.

[Dirty Don]

Totally agree with Lightwarrior...RNs are the best people within the medical environs to trust and communicate with...they aren't so removed from us common folk! LOL RNs tend to be able to tell the truth without damaging the patient or leaving us in confused states...when I was in ICU & recovery, I do remember all the docs and their opinions, but it was the RNs who took care of me 24/7 and put up with my BS to whom I am forever indebted for getting me through...in fact, I truly believe one male RN saved my life by telling me like it is...sighs...I need to go back and thank him personally....

[Al]

David, I agree with the other comments. You didn't mention the bone of contention, but often all it takes is to ask the question: "You said that, but Dr. X said this. What's the skinny here?"

Al

[Sangye]

I agree with what Dirty Don said. Tell them "Talk amongst yourselves and get back to me." LOL

I don't agree that the nurse is always trustworthy. I've had nurses who gave me better info than the doctor and nurses who gave me instructions that could have seriously harmed me if I'd followed them. Basically, both doctors and nurses have put me at risk numerous times.

[TOBEY32]

My docs aren't all in the same office. Would be hard to get a consensus. And, no, they don't talk alot between each other - far as I know.
Went to see my Internist yesterday regarding non-Weg's stuff (don't see him re Weg's). Had my latest test results with me, seemed concerned about some, has plans to talk to my Weg's docs. Do appreciate his bull-by-the-horn approach.
I may be a little more docile than some. Appreciate the reminder.

[Dirty Don]

Just a thought: I would gather all pertinent contact info for each of your docs & hand deliver to each of them w/ a written request...at least it will get their attention...??? Good luck to you!

[Lightwarrior]

I agree with what Dirty Don said. Tell them "Talk amongst yourselves and get back to me." LOL

I don't agree that the nurse is always trustworthy. I've had nurses who gave me better info than the doctor and nurses who gave me instructions that could have seriously harmed me if I'd followed them. Basically, both doctors and nurses have put me at risk numerous times.

Okay, okay Sangye, I said take that with a grain of salt (LOL) With Wegeners we can't really trust any profession, we have to find the individuals, doctors and nurses who we can trust. One of the things I look for is someone who doesn't know all the answers. Someone who claims to is always a red flag for me. I trust my pulmonogist because he cried when he told me I had Wegeners and told me that I would have to study Wegeners and become the expert because very few docs had ever had a patient.

I know that you should go to a Wegeners specialist and this is absolutely the gold standard and what I would recommend. I feel like I'm trying to flare again...hope I'm wrong.

[Sangye]

I should say that I hold nurses in very high esteem. And Dr Seo is great but he messes up, too.

I sure hope you're not flaring, LightWarrior. What symptoms are you having?

[Hammy8241]

Usual 'flippant' Hammy answer:sad:!

I'd decide by who is most attractive. Would you like an ugly ol' fart standing over you on your death bed saying sorry!:unsure:

[delorisdoe]

Usual 'flippant' Hammy answer:sad:!

I'd decide by who is most attractive. Would you like an ugly ol' fart standing over you on your death bed saying sorry!:unsure:

also the criteria i used to pick my husband

[pberggren1]

You two crack me up.

[Lightwarrior]

I should say that I hold nurses in very high esteem. And Dr Seo is great but he messes up, too.

I sure hope you're not flaring, LightWarrior. What symptoms are you having?

I have had extreme joint pain, shortness of breath, blood tinged sputum, angry red rash on my right arm similar to the rash on my lower legs when I was diagnosed and a CT scan showing broken glass with scarring and nodules. My primary, a NP panicked and kicked into high gear, she ordered all of the tests. Good news my creatine was only 1.0. I did have elevated crp and esrd, we did not do ANCA. She got me in same day to my rheumy (my rheumy left for the east coast and his partner from San Diego comes in for two days once a week, that is the bad news, the good news is he has had four or five weg patients (woot, woot as Marta would say) but he listens and spends a good amount of time with me and my chart. He was not in Yuma until Tuesday but he has a brand new PA. She is young and sweet and I think I intimidate her, but she listens and she gets him on the phone and is not afraid to say I am her first weggie and she doesn't want to screw me up. Through skype in his office, my NP's assessment, PA assessment and my assessment, Keller (new to me Rheumy, San Diego guy) agreed that I was having a flair. He ordered through Rochelle 1 gram of Sol u Medrol IV. Here is where I eat my words about all nurses being wonderful. I can just go in through the ED, they can give me my infusion and I can go home. Normally, this wouldn't have been a problem but she very quickly informed my NP and my Rheumy that she really didn't care who I was, there were 78 people in line ahead of me and I would have to wait in the waiting areas just like everyone else. Okay, so one of the docs who I haven't pissed off to badly for not following protocols that make it easier on patients, i.e. sepsis, DKA, Post Cardiac hypothermia etc. Actually told my team that he liked me and would love to just give me the infusion and move me on my way. (Shakespeare would have loved my life) meanwhile, I am having to remind my family that claiming to be a family who believes that the power of love is greater than the power of hate means that we will be tested and that we do need to pass the tests.

Out patient nurse is one that I passed over for a director level position, she took the order but before I could get there she left (did I mention that it was already 05:00 pm on a Friday afternoon) She didn't call me but when I got there and got her on the phone she made sure to make a big deal that she waited from 05::00 until 05:20 and when I wasn't there she couldn't wait any longer, she called my NP and said I was "no show", even though she had my number (I was there by 05:30). Clearly she was digging in.

So...okay if a door won't open then look for a window. I call the ED charge nurse, since I trained most of them I have a good rapport. Unfortunetly, last night was the hospital awards banquet and all of the RC's were there, except for another nurse who I had passed over as an ED charge nurse. I'm beginning to understand that;

A. It is ultimate payback time and maybe my skills at talking to the candidates that didn't make it and helping them to develop a plan isn't as holistic as I think.
B. I need to get over myself and think I need special treatment or
C. The wise universal spirit has an incredible sense of humor and I have amused her for years(i always get what I need but usually the wise universal spirit gets a good laugh out of it first)

I get there and go from triage to the back forty with 25 (they had them divided up in lots of 25) my lot was the farthest back. Of course there is the usual hacking and coughing and vomiting (my kids are told they must wait outside, they are freaking out and giving me strict instructions to keep my mask on). I feel like warmed up, well you can guess. An ED tech comes back to get some blood and says to the nurse who is watching this area "Oh, my god that is Christi Brito, she can't be exposed to this, she is immuno-suppressed. This nurse, who doesn't know me but I have watched her as she deals with the patients in this room in a loving and smart manner, moves me to the first room. The tech manipulates the nurse I get, who very quickly understands the picture. She starts my IV and starts the infusion of IV steroids.

Meanwhile, oh yes there is more, the charge nurse figures out I'm not in the back forty and appears just a tad bit irritated. The House Supervisor just happens to walk through and agrees that I need the infusion and a quick discharge. We have another ED doc who sees patients but does nothing with the disposition (admit, discharge, etc) until the end of his shift, sees my name and transfers me to his care as a "favor for a colleague" in his words. He orders all the tests, labs, CT, etc that had been done earlier in the day by my NP and orders only 100 mg of steroid until he figure out why anyone would want me to have 1000mg. He comes to see me and we have a 45 minute, teach him about wegners and flairs. He leaves to go order the other 900. My nurse who "got it" comes in, tells me she had already infused the 1000mg before the 100mg came through and she was discharging me before someone tried to give me the 900mg the "favor for a colleague" doc had ordered.

She takes out my IV and we move as quickly as we can without arousing sususpicion. If I feel the need to be admitted, I will push for ICU so I won't have to deal with anyone but the docs I work with every day. Now I have to really think, did my being who I am hurt my ability to live? or would John Q Public have had a worse time with a worse outcome? I sincerely hope it is not the latter.

Okay, so I guess you have figured out that being rather wordy goes along with my pred head. Thanks for listening.

[Al]

Hey, Lightwarrior, you really are a born story teller--this is really good! (And, for a pred-head, very cogent...!) And, oh, the sad irony of it all. Please keep your diary going, and continue giving us the lowdown...

Al

[Sangye]

LOL I don't think you've used so many words in all your posts combined, LightWarrior! Definitely the pred. But it was a great and compelling story. I was hanging on every word. What are they going to do besides the solumedrol?

For what it's worth, I've had far worse ER experiences. I mean holy cow bad. I sure admire your determination to walk your talk and remain peaceful. I can only say that my own reactions have been uh... mixed. LOL

[sue7211]

Wow, such a story! I totally understand. Most of the time if my son has any symptoms I end up dealing with a pediatrician, one or two pediatric nephrologists (one is a clinical fellow that has been with us since the diagnosis) and an adult rheumatologist. There is now way to communicate with all of them at once. One will notify the other but sometimes things get taken out of context and the reaction is then a treatment that doesn't make sense!

When we had a lot of questions and there were conflicts about how and which treatment protocol to follow between the different departments we sought a second opinion and that doctor actually called a meeting with all the others to come up with a cohesive plan. I couldn't thank her enough.

Yes, when the doctors say things that conflict or don't make sense I totally agree that you need to call them on it. If you have the right doctor they will get their act together.

As for dealing with the hospital emergency room. We have the fortunate situation of being friends with one of the attending doctors at our local children's hospital. If she is not on duty I call her any way and she either meets us there or calls one of her friends who is on duty and gets things streamlined. Or our pediatrician bypasses the ER altogether and directly calls radiology, etc. and orders the tests so we don't have to go to the ER first. Perhaps when you are better you can "befriend" one of the ER docs who can help you when you really need it.

Good luck.

Sue