User Tag List

Likes Likes:  0
Page 1 of 7 123 ... LastLast
Results 1 to 10 of 64

Thread: Making lemonade from molehills

  1. #1
    Join Date
    Oct 2011
    Location
    Pacific Northwest (USA)
    Posts
    1,851
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Making lemonade from molehills

    I had a session (aka “appointment”) with Drac today, which proved interesting on several levels. You may have noticed an extra feistiness in my other posts earlier. By way of explanation, and on the presumption that you may also find some of this interesting, I will give you a report.

    First, my own situation is unremarkable, so this paragraphwill be brief: Anemia markers are low but stable. Kidney markers are high but stable. On the other hand, protein is the best it has been since the whole sorry story began. Drac doesn’t want to address any changes of medication during the holidays. And he agrees that is is a good idea that Imuran users should have liver enzymes checked periodically (my liver tests have always been boring, but with AZA, you never know...).

    (Speaking of AZA, you sometimes need to keep your local neighborhood pharmacist honest as well. My prescription, which I started two months ago, stated: “Take one and a half pills daily for two weeks. Then take three pills daily.” The next month, I refilled the prescription, but neglected to look at the label. Then, when I ran out, I tried to renew, but the pharmacist said I was a week early. Turns out they were recycling the original instructions, rather than taking the intent of the prescription, and giving me 69 pills for the price of 90.)

    Another thing that came up involved my question about blood pressure meds, A recent report suggested that they are, at least for kidney patients, best taken at night. (Better proteinuria results.) I wanted Drac’s opinion. He somewhat sheepishly admitted that he was “a little behind” on this reading. (The study was in a journal that should have been on his list.) But he agreed that this is a good idea.(He was talking about main BP meds. Diuretics tend to keep you awake.)

    From there, we got onto talking about the art of diagnosis and the art of the exam. He mused about the old-time cardio profs in med school who could tell everything about a patient with a stethoscope and sensitive hands. “But nowadays, they just do the test,” he said. “I think this is not so much a dying art as a buried one.” Interesting admission, as was his agreement that specialists tend to look for diagnoses that can be explained from their own professional biases. These things reinforced my feeling that it is critical, in the patient/doctor relationship, to work off-script.

    I also challenged, slightly, his business model, though my goal was larger. I believe there are excellent reasons to hypothesize that autoimmune diseases are on the rise generally, and in excess of “better reporting” and more frequent diagnosing. Regardless of whether the hypothesis is correct, however, people who deal with such things will be dealing with far more cases. Now, Western Washington has enough population that it could support, I believe, a vasculitis center of its own, especially with a major university med school in the area. And I made the point (thinking all the time about off-script solutions) that this kind of pooled, interdisciplinary approach would profoundly help patients and doctors, and families. I fully believe this. Besides, it would be a great way to involve the researchers in our very human journeys. (Seattle is the home of the Benaroya Research Institute, (www.benaroyaresearch.org), that employs a lot of hot-shot scientists to study autoimmune diseases.). Drac agreed with me. And, I think I did him a favor. He was actually fired up--at least it seemed that way to me--about the possibility of making this happen.

    There is my report. I’m still anemic, but maybe I’m not so dead-beat yet....

    
Al

  2. #2
    Join Date
    Mar 2011
    Location
    canada
    Posts
    1,154
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    cool man cool
    lightning crashes
    leigh

  3. #3
    Join Date
    May 2010
    Location
    Walla Walla, WA
    Posts
    206
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I would LOVE a vasculitis center in Washington!! I totally respect and love Dr. Langford at CC, but it is a huge pain in the patootie to arrange my life to trek across the country, not to mention dang expensive. Way to go, Al!

  4. #4
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by ArlaMo View Post
    I would LOVE a vasculitis center in Washington!! I totally respect and love Dr. Langford at CC, but it is a huge pain in the patootie to arrange my life to trek across the country, not to mention dang expensive. Way to go, Al!
    Hello, fellow Washingtonian! Ditto on a vasculitis center here. Great to hear from Al about the Benaroya research center. Had to dig to find Wegener's listed there. I hope that will change. And I know there are people at UW interested and dealing with vasculitis. With more and more people getting diagnosed, seems like it could happen...

    Anne in Olympia

  5. #5
    Join Date
    Oct 2011
    Location
    near Phx, AZ
    Posts
    1,809
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by ArlaMo View Post
    I would LOVE a vasculitis center in Washington!! I totally respect and love Dr. Langford at CC, but it is a huge pain in the patootie to arrange my life to trek across the country, not to mention dang expensive. Way to go, Al!
    Not sure if we've talked before Arlamo, but there is clear vasculitis help much closer to you than CC! I'm in Phx at Mayo Clinic & Hospital, and NicShaf is in SoCal and has found some docs there who specialize I think...best of luck...

  6. #6
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I'm glad things are gradually improving for you, Al. I was anemic for several years, even after the Wegs was supposedly under control. My docs all attributed it to "chronic illness anemia" which is a poorly understood condition. Turns out it was Wegs rumbling all that time. Once I began rtx the anemia resolved and has never returned unless the Wegs is active.

    In regards to the art of diagnosis, when I was in chiropractic school a number of us trailed around after a 70-yr old chiropractor instructor between classes to learn how to really diagnose and treat patients. He was amazing.

  7. #7
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Dirty Don View Post
    Not sure if we've talked before Arlamo, but there is clear vasculitis help much closer to you than CC! I'm in Phx at Mayo Clinic & Hospital, and NicShaf is in SoCal and has found some docs there who specialize I think...best of luck...
    There's also the center at U. of Utah, and some specialists in the S.F. Bay area. ArlaMo probably knows about those. But from what I've read on this forum, Dr. Langford and CC are held in such high esteem, that if she is able to make that trek, and is established as a patient there, it is understandable that she would keep doing so for the time being....... I'm assuming she has somebody here for routine stuff, too. However, the expense part is pretty darn important and definitely rules it out for me!

    Anne

  8. #8
    Join Date
    Oct 2011
    Location
    near Phx, AZ
    Posts
    1,809
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default

    Agreed on the expense, am damn lucky I live where I do...luck baffles me sometimes!! LOL

  9. #9
    Join Date
    Oct 2011
    Location
    Pacific Northwest (USA)
    Posts
    1,851
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Sangye View Post
    I'm glad things are gradually improving for you, Al. I was anemic for several years, even after the Wegs was supposedly under control. My docs all attributed it to "chronic illness anemia" which is a poorly understood condition. Turns out it was Wegs rumbling all that time. Once I began rtx the anemia resolved and has never returned unless the Wegs is active.

    In regards to the art of diagnosis, when I was in chiropractic school a number of us trailed around after a 70-yr old chiropractor instructor between classes to learn how to really diagnose and treat patients. He was amazing.
    In my case, Sangye, the anemia is surely related to poor kidney function, so is connected only indirectly to the disease. Oh, the CTX didn't help either.

    You might be interested in the Robertson Davies book, The Cunning Man, which is a sort of murder mystery with a holitistically minded diagnostician as the protagonist. Like all Davies books (some others idiosyncratically deal with Jungian analysis and opera production), it is a hilarious romp.

    Al

  10. #10
    Join Date
    Oct 2011
    Location
    Pacific Northwest (USA)
    Posts
    1,851
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by annekat View Post
    Hello, fellow Washingtonian! Ditto on a vasculitis center here. Great to hear from Al about the Benaroya research center. Had to dig to find Wegener's listed there. I hope that will change. And I know there are people at UW interested and dealing with vasculitis. With more and more people getting diagnosed, seems like it could happen...
    I may have bitten off more that I can chew, Anne, but...we'll see.

    Al

Page 1 of 7 123 ... LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •