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Thread: Recapitualtion

  1. #21
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    Michelle, this is precisely my point. I do not meant to imply that doctors are, bu nature or by class, "uncaring". No, they are just people, which is to say, in terms of morality, nobility, empathy, and all the other supposed virtues, they run the gamut--just like the rest of us. Likewise, with "vices". But the fact is that your life is not their life; For the same reason, I did not have an architect design my house: After all the pictures, write-ups, and awards (or whatever), the architect cashes the check, retires to his own deck and moves on to the next project. But I actually have to live in the place. Your doctor sees hundreds or even thousads of patients a year. Of course their brains become mush, when it comes to fine details! How could it be otherwise? It is true, of course, that emergencies can focus everyone's mind. But my own strategy for getting the doctor's full, and perhaps lasting attention, is to 1) get him and keep him off-script, and 2) Bridge the knowledge gap as much s possible. That means studying hard, becoming aware or industry trends that the doctor is not aware of (I read more journal articles than Drac does--a fact that he no longer resents!). It also means endlessly studying those dots for alternate interpretations.

    Al

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    Jane and Anne both mentioned the Friday Harbor Labs. While not as famous as Woods Hole, it is, nevertheless, a top research facility, particularly for marine sciences. It, most eveywhere else in the islands, a lovely place, so long as you believe in ferries and other maritime modes of transportation.The islands are a wonderful place to call home, and something of an oasis: We residents refer to the mainland as "America", as in, "I have to go to America today". Unfortunately, the doctors are all Americans.

    Al

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    Quote Originally Posted by Palmyra View Post
    I can't say enough positive words about what I have witnessed at the Mayo Clinic and its philosophy of collaborative medicine. It is the best I have ever seen.
    A large & magnificent DITTO!!

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    Unfortunately, Don, most of us to now have a Mayo-like situation. We have to construct our own team.

    Al

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    Quote Originally Posted by Al View Post
    Unfortunately, Don, most of us to now have a Mayo-like situation. We have to construct our own team.Al
    I wouldn't call it a misfortune, rather it simply shows that Mayo and others like it do work. It IS unfortunate that many if not most don't have the immediate access to a Cleveland, Mayo, or Hopkins...thus the hard work to put together a 'team' of collaborative colleagues. I admire those who do put those teams together, and I realize that those of us who have access to a 'Mayo' like situation are fortunate...just saying...now put your pred away!! LOL

    Don

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    Quote Originally Posted by Al View Post
    Jane and Anne both mentioned the Friday Harbor Labs. While not as famous as Woods Hole, it is, nevertheless, a top research facility, particularly for marine sciences. It, most eveywhere else in the islands, a lovely place, so long as you believe in ferries and other maritime modes of transportation.The islands are a wonderful place to call home, and something of an oasis: We residents refer to the mainland as "America", as in, "I have to go to America today". Unfortunately, the doctors are all Americans.

    Al
    I haven't been on the islands enough to hear the "America" thing. That's funny. But I certainly know that feeling, once there, that it is an oasis and you are somewhat insulated and protected from mainstream society. Living there might be kind of like a permanent vacation, and if you had to go to "America", it would be a brief interruption in the vacation. If you have to have Wegs, even with the transportation issues and such, that is pretty good place to have to have it. And the UW labs themselves are like a little oasis. I wonder if Jane's brother could have known my dad, since there was a little overlap in when they would have spent time there.

    Also, congrats on designing your own house! My dad's wife pretty much did the same thing. (Of course, then you have to work with the builders unless you're going to build it yourself.) I think I'd trust an architect a bit more than most doctors to take the time for personalized attention and doing the job I needed done. You saved yourself some big money, there, though!
    Anne, dx'ed April 2011

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    I feel so stupid when I talk to you guys..you all seem to know so much about this disease and what to ask and what to expect. I just came back from by dr. and he gave me a copy of my labs and my current ultra sound of my kidneys. The labs were all fine EXCEPT it did show a trace of ketones,trace of blood and trace of protein in my urine. I had ct ct scan done on my liver and kidneys and they noticed cysts and multiple lesions which they suspect are benign but suggest another follow-up ct.They don't know I have WG so I'm hoping it hasn't spread. My reg dr. did not seem to concerned but he is sending over a referral to a kidney dr. Question-----if it were in my kidneys wouldn't my WBC & RBC be off?

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    Debra, don't feel stupid... we don't all know that much. For example, I can't answer your question... Someone like Al who does know a lot will chime in and clarify things for you.
    Anne, dx'ed April 2011

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    " I wonder if Jane's brother could have known my dad, since there was a little overlap in when they would have spent time there." ~Anne

    Hi Anne...it would be fun to know if they might have crossed paths. I think we should try and find out. I can ask my brother who was director of his program at the time. I was only 16 yrs old at the time of my first visit (~July 1973), and I stayed with my brother in student housing. I remember going to a small reception at the directors home on the island, where some students performed a classical music recital. It was an extraordinary experience for a teen from Texas.

    Jane


    And I second Anne's comments to Debra...we are all on this site for support, not judgment. That one is fortunate enough to land on this forum, while navigating the complexities of this disease, is a wonderful thing.
    Last edited by Palmyra; 03-28-2012 at 04:50 AM.

  10. #30
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    Jane, I'll send you a PM re Friday Harbor Labs.
    Anne, dx'ed April 2011

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