Help with my first official appointment with a WG specialist

[HopeinTN]

Good luck Nancy and welcome!

[annekat]

Yes, welcome, Nancy, and best of luck in getting on the forum in person and with your plans to consult with Dr. Koenig. I will be very interested to hear how this goes, as Utah may be the closest specialist center to me, in case I should ever have the need and/or be in a position to go there.

Anne in Olympia, Washington

[dmd8765]

Thought this might be helpful or at least interesting for Nancy:
Vasculitis Center to Open in Salt Lake City, Utah - Curry L. Koening, M.D. | Vasculitis Foundation

Dr. Koenig was a fellow at the Cleveland Clinic who trained with Dr. Hoffman--hope he got some of Hoffman's thoroughness and kindness along with his knowledge.

[annekat]

Thought this might be helpful or at least interesting for Nancy:
Vasculitis Center to Open in Salt Lake City, Utah - Curry L. Koening, M.D. | Vasculitis Foundation

Dr. Koenig was a fellow at the Cleveland Clinic who trained with Dr. Hoffman--hope he got some of Hoffman's thoroughness and kindness along with his knowledge.

Thanks very much for that. This statement by Dr. Koenig, written several years ago, shortly before he went to Utah to establish the new Center, is worthwhile reading for any of us, whether contemplating going to Utah or not.

Anne

[Al]

Thanks very much for that. This statement by Dr. Koenig, written several years ago, shortly before he went to Utah to establish the new Center, is worthwhile reading for any of us, whether contemplating going to Utah or not.

You do not often find doctors offering a "mission statement" long, or this heartfelt. I have never met Dr. Koening, but I am guessing that he is as sincere as this note.

Al

[tomntexas]

The absolute key is to find a doctor(s) who have experience with WG. My kidney specialist and Oncologist here in San Antonio have been wonderful since my diagonsis in November 2010

[marta]

I'm posting this for Nancy - thanks to you all for your kindness and replies to her as she embarks on this nutty ride...

"Dear New Friends,
Thank you! As I read through threads, I see a continued theme repeated. One of welcoming open arms, support, help, and bravery. I appreciate this so much. The last 14 months have been....well, only something YOU would understand!

My last experience was yesterday. I went to see an eye Dr. as a result of a sandpaper feeling, the inability to open my eyes in the morning, and weird pressure behind my eyes. As I explained the situation (vasculitis) to the technician, she replied "ya...well, I'm sure this disease is something that comes in various forms and can be treated easily. You look well". I quickly decided not to respond to her. Then as she was yelling at me to keep my eyes open, I whispered "you have no idea how hard this is". She laughed, then seriously (stern and irritated) said "What makes you think I don't know what that feels like?". Oh Marta, I only thought of you. The way you shared with me how no one knows what I'm feeling. I was speechless. Then the Dr. came in and spoke much about how he knows all about cellulitis and that I shouldn't listen to my friends blah blah... then his parting thoughts are "you have dry eyes as a result of old age and living in the desert".

The blood in my urine is a kidney stone that never manifested.
The joint pain is possibly stress, or fibromyalgia
The rash on my face is acne (still here months later, and never surfaced like acne does)
The punctate hemorrhages at my eustachian tube is "just Eustachian tube issues"
C-ANCA elevated is simply "concerning"
The hip pain is because I need to exercise more
Swollen sinus is allergies
and now...
Conjunctivitis is old age and living in Arizona!!!! Oh gawsh...why do they not see the BIG PICTURE!

I wish I could figure out how to register for the forum. I've tried my gmail account, my aol account, and my yahoo account. I keep getting the message that my email service is problematic because of SPAM issues. If anyone has an idea how I can resolve my registration issues, I would love that. I know Andrew is having a hard time, I pray that he will find peace and recognize his strength and know that he has a lot of support here.

Oh...before I close I want to let you all know that I'm so honored to "know" you. I have read many times each of you discuss how your situation isn't as bad, and that someone has it worse, and that your thankful for a "mild" form. But the posts go on to share your painful stories and they are far from mild. Your strength and bravery is unwavering. Your outlook on life is inspiring. Bless you all!!! I hope I can be half as strong and that someday I can reach out and help others the way you all do. "

[Dirty Don]

old age and living in Arizona!!!! Oh gawsh...why do they not see the BIG PICTURE!

They don't see the big pic cuz they weren't trained to do so...it's very difficult for a specialist especially to step outside their little medical world at times. I've had many docs just recently remind themselves in front of me that they need to talk in 'lay' terms for people and be more like they would like to be treated!

As for living in the desert, I don't know how far you are from Mayo/Phx, but I go there, Dr. Catherine Harmann is who I see. She's a rheumy with a special interest in WG...she, and the Mayo team, have done wonders for me, and continue to do so. Insurance is frequently seen as a problem with Mayo...but for specific doctors, not a family or group plan, your insurance should work, even Medicare, for specific docs only though. Once you get in to see Dr. Harmann, she completes a team of ENT, Pulminoligist, and sometimes a blood specialist...but these people are my team...they are responsive, inquisitive, and aggressive...let me know if you're interested, I've learned a lot thru them in just the few months I've been going. Good luck Nancy!

[Al]

Oh gawsh...why do they not see the BIG PICTURE!

Nancy, this is a complaint that is depressingly common, and deserves all the rants it can get (not the complaint itself, of course, but the very reason for it). To begin, that holistic diagnostics techniqe is rare is an artifact of, as Don points out, the specialist system: The tendency is to look for answers that conform to how you view your tiny part of the world. To be fair, this way of thinking is hardly limited to doctors. To take in a whole range of possibilities to solve any problem is beyond the powers of most of us. You know the saying: When you are a hammer, every problem looks like a nail. And to apply the holistic approach to someone else requires immense amounts of empathy. We, as humans, are not great natural empathizers. Think how hard it is to consider even a close loved one getting a headache. "Oh," you might say, "you can fight your through it." However, while this might be annoying in an everyday interpersonal relationship, we expect more of our doctors. After all, they are charged with bringing our machinery to its best possible operating state. That is, in fact, their profession. And they are getting paid good money to do it. But another dynamic comes into play here: the desire (for many doctors) to know more than their patients. The rationale seems to be that a confidant doctor, the one who knows it all, is more helpful than one who is a seeker. I flatly deny this. I vastly prefer, and trust, a doctor (as I would any teacher, adviser, friend...) who has doubts, who would rather learn than preach. It is true, of course, that we are all different. Many patients probably do prefer the doctor-as-God style. But this can only be successful, I think, when the doctor clearly knows vast amounts more than the patient. I have not found this to be universally the case! In any event, the doctor manifestly does not know more than you about what you have been through, how you feel. He or she has never once, I am sure, walked in your shoes.

Yet, some doctors are better at looking at the big picture than others, though they may have to be bludgeoned into wearing that new costume. Your opthamologist may be a lost cause, but others, I've found, can be trained, though with effort. To the extent that we on the forum have walked in similar shoes, if not your specific ones, we will travel the road with you the best we can. My own opinion is that your first step is to find a compatible and knowledgeable doctor to manage (I almost wrote "mangle"--which seems to be your present situation) your case.

Al

[Sangye]

Nancy, I've experienced similar issues with unskilled and/or uncaring doctors and their staff. Basically I learned that there are 4 options:
1) Continue to see them and suppress your anger, pain, hurt, fear and concerns
2) Continue to see them and express your anger, pain, hurt, fear and concerns
3) Pout about it
4) Get outta there asap and don't stop until you find the excellent care you deserve.

I have done all of these. I spent most of my first 2 years with Wegs doing the first three and do not recommend the beating your head will take as it hits the brick wall over and over and over.