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Old Sun Dec 7, 2014, 09:33 AM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
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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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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