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  #1  
Old Sat Dec 6, 2014, 08:12 AM
StephM StephM is offline
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Location: France
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Too many questions?

I'm not sure where to post this.
I have attended all the doctors'appointments with my brother since he was diagnosed with AA: BMBs, transfusions, ATG, cyclosporin, posiible relapse and now hip replacement.
I asked a lot of questions about everything because I wanted to know. And I came here because I wanted to know even more. And my brother seems to be OK with that.

I saw our family doctor recently. He is in touch with the staff taking care of my brother at hospital and they had talked about me..
He literally scolded me... reproaching me for asking far too many questions during the appointments.
I actually embarass them ...
There are things that should not be asked, or talked about, especially in front of my brother. I should not try to get any information by myself, let alone on the internet because that kind not knowledge is not for me... I should trust the doctors and let them tell him what he needs to know.

I was rather furious. Now, I wonder...
What do you think?
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  #2  
Old Sat Dec 6, 2014, 09:58 AM
Data Data is offline
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New doctor

StephM,
I am far from an expert but IMHO I think as long as your brother is OK with you asking the questions the doctor should answer them. My wife always goes to my appointments with me and asks questions. If there is not a compelling reason to go to this doctor I would suggest trying to find another doctor - preferably one who is an expert in the field.

Please tell your brother "Good Luck" and I wish him the best.

Data
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  #3  
Old Sat Dec 6, 2014, 03:17 PM
Neil Cuadra Neil Cuadra is offline
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Steph,

If a doctor told my wife or me that we shouldn't ask so many questions, I'd change doctors.

The doctor allots a certain amount of time to patient appointments, so you obviously can't keep them there all day, but doctors can also answer questions by email or delegate them to other staff. Denying you the chance to have your questions answered is something I find unacceptable.

Learning as much as you can doesn't mean you're going to second-guess everything the doctor says. Instead, you'll be better able to understand what the doctor says and you can help make decisions that are up to the patient and family as much as the doctor.

What you should do in this case is ultimately up to your brother.
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Old Sat Dec 6, 2014, 04:00 PM
StephM StephM is offline
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Thank you both for your answers. I feel less ...guilty.

Maybe I will be more careful though. During the next appointment I intended to ask about the risk of relapse induced by the upcoming surgery. (I had asked the question in another thread)
He may not have even thought about that and it could add to his stress.
Or maybe he has and he doesn't dare ask the question.

I will definitely have a conversation with him. You are right Neil, it's up to him to decide.

Thank you so much Data! I wish you all the best too.
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Old Sun Dec 7, 2014, 12:02 AM
DanL DanL is offline
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I think that you already received the responses that you needed here, but I changed doctors as a result of this same retort. If the doctor does not want to answer my questions, he/she does not want me as a patient. It is important to understand the disease and treatment options to a degree that you are comfortable with as a patient. Some patients really don't care about the details and just want to be treated, but others need more information.
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Old Sun Dec 7, 2014, 09:33 AM
Marlene Marlene is offline
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I found it useful to go in with my top three issues/questions in order to get the most out of an appointment. I found that too many questions resulted in a lower quality discussion. Another tactic I would use would be to tell them I have X number of question in order to set an expectation.

Bottom line: They work for you. They get paid by you. And no one cares more about your bother's health than the two of you. The doctor is not there 24/7 and does not have the time to do so either. It is in your best interest to know and understand the best you can so the two of you can make the right decisions for him. As Dan says, some are OK to turn it over to the doctor and that works for them. Others need to have some level of involvement.

Regarding surgery. John had to have knee surgery to fix a ruptured quad tendon and it had no impact on his SAA. Risk of relapse exists all the time and they really cannot predict it. I don't even know if they have statistics on causes of relapses. My bet is that the answer will be most likely "no" or "that has not been our experience". There have been others who have had to have joint replacements and they did not relapse.
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