Help with my first official appointment with a WG specialist

[marta]

Hi gang, I'm posting this for a new friend who is having a hard time getting registered on here. She's been reading but can't post, so I offered to post this for her.

"
Help with my first official appointment with a WG specialist.

I have been ill for 14 months. Symptoms: walking on glass foot pain, roaming joint and muscle pain, extreme fatigue, hemmorages near my eustachian tube causing blockages, blurred vision, rash on my nose, elevated C-ANCA.

I've settled with a local rheumy after a few other appointments with strange Dr.'s. Each one is clueless. My current rheumy has a good personality and lots of experience as a rheumy, he's had one patient with WG.

He is monitoring me with a visit every three months because I have elevated C-ANCA. But...He directed me to my primary care Dr. when I had blood in my urine "it must be kidney stones". He doesn't think the joint pain is related to WG. He "wonders if it's fibromyalgia". The rash must be acne, he says. You get the picture.

Whatever this is, is NOT getting better. So I took it upon myself to get an appointment with Dr. Koening at the University of Utah. My rheumy doesn't even know about this... I'm feeling a little guilty.

My questions for you are:

For those of you that see Dr. Koening, what is his personality like? In other words, what is my best approach for excellent communication with him?

What questions should I ask? Is there anything I should insist upon before I leave his office?

I'm flying from Arizona for two days. I'm cash paying so I was hoping to get a consult with him, have orders sent to Arizona and get my tests run in Arizona where my insurance company will pay for the testing. Is there a better way to approach this?

I think that's all for now. Thank you Marta for posting this for me since I'm having a hard time registering. https://s-static.ak.facebook.com/images/blank.gif

Nancy"

[Al]

Nancy, I hope you get your registration issues resolved; this would be a good place for you. Marta called it an oasis. It is!

I cannot speak to the vagaries of your insurance, nor can I tell you anything about Dr. Koening, other than to note his reputation. You raise several other points, however, that stir my juices.

You hurt a lot, have classic signs of ANCA disease (including joint pain), and are seeing a doctor only once every three months? The only reason this is reasonable is that, as I understand it, you do not yet have a diagnosis. But that, in itself, is not reasonable under the circumstances. Clueless doctors are not an answer to your problems--especially when the clues are so readily apparent. The idea that blood in the urine "must" be a result of kidney stones is particularly egregious. There are many possible explanations, and some of the likeliest candidates, considering the other clues, are far more serious than stones. At the very least, he should have ordered an ultrasound.

There is no guilt, Nancy, in wanting a second opinion, or even in switching doctors. When you hire a plumber, you want him to do a job; if he is not doing it, you have every right to replace him. In contractual terms, doctors are just like plumbers, except that they no longer make house calls, and they take less responsibility for the outcome. On the other hand, doctors are not fungible commodities, like a can of beans to the grocery shopper, or a canary to a cat, or, to some extent, the plumber. Some have better skills than others in areas critical to your care (the job you are asking them to do), like diagnostics, knowledge of the disease in question, and the all-important bedside manner. It is, to be sure, unfair that your insurance will pay for a commodity clinician, but not for you to get the care you need. Note that "networks", so far as the insurance company is concerned, is about a business contract, not medical care in the sense that patients need it to be. But remember that this is your body, not the doctor's or the insurance company's, and you are allowed to give it the best you can.

How do you communicate with Dr. Koening? Again, I have never met him. But I can tell you that, in my experience, such consultations are usually longer than the typical office appointments, with much more discussion about your history and your symptoms. He will want to know what tests and procedures have been performed, what diagnoses have been made, and so on. Your job is to be truthful, including why, in your opinion, diagnosis X may be wrong. This is the downside of not telling your current doctor about the second opinion: He will not have forwarded your records. At the least, do take all the test results you have in your possession.

Tests, though, are generally quite fungible--a test is a test, regardless of which lab performs it, so long as the lab is accredited. However, some tests are not regularly performed by local labs and must be sent out to a larger lab.

I'm sure that Dr. Koening will be an excellent resource, though, given your insurance, perhaps not a candidate for permanent employment. For what it's worth, one of our members, Don, swears by (not at) the Mayo Clinic in Phoenix. Are they in-network for insurance purposes?

I'm proud of you for taking charge, Nancy. Please give us a report!

Al

[ArlaMo]

Nancy - You know what I think!! I'm so excited you're going to Utah!

vdub is one on this forum who has been to see Dr. Koening so hopefully, he will see this and give you some good info on that.

Love ya!!
Michelle

[aewaustin]

Nancy,

Ugh I feel for you. Getting sorted out with good doctors is the first step, and such a hard one. I also have kidney involvement and can tell you what I have learned through a few years of trials... Get a 24 hour urine, it tells more than the normal ones. The way that I was diagnosed at Cleveland Clinic was to pee in a cup and have the doctor "spin it" and look at it within an hour. That tells them a few things, the most important is if the cells are dismorphic (might be wrong on that word) but if they come through crinkly, and if so that means that your kidney is having issues. Also they will want to look for granulomas in your UA. Now I am not an expert, this stuff is all clear in my head, but when writing here the words might not be the exact right ones, but my interpretation. But get a 24 hour UA and make sure a doctor looks at your UA within an hour and after it is spun. I have to go to a kidney doc for a visit to get the spin, regular labs can't do it.

When you go to the expert have a clear list of your issues and a list of questions. I keep a diary on my symptoms and the amount of meds that I am on for the day I write in, highly recommend doing this, makes things easier to remember for times when you do go to a specialist. Or if you have a relapse a few years later you will have an idea of what happened last time.

At any rate if you have Marta for a friend you are in good shape, she has been through much of it so she can help out greatly, and I would be happy to chat with you about kidney stuff :)

Anna

[Dryhill]

Nancy, do make sure you write down all the questions you have for Dr. Koening, it is all to easy to forget something important. It can also be a good idea to have someone with you at the consultation, two memories can often be better than one.

Jim

[pberggren1]

I think vdub or someone on here sees Koening.

[marta]

I'm posting for Nancy again. And Nancy, it's totally my pleasure. I'm glad I can help in whatever microscopic way.

"Al, I agree with you and Marta...an oasis. I've learned so much reading through the forum. Most importantly I've felt the compassion members have for each other. It is a great place to be, indeed.

When my rheumy sent me back to my primary care doctor for kidney stones (which I did NOT have), I sat in the exam room of my primary care Dr. and shed a few tears from pure frustration. He scratched his head, and ordered an ultra sound. Since then I see a nephrologist every 6 months. I've only had blood show up in a UA twice since then, but it hasn't been consistent and the ultra sound looked good. When I complained about an ear ache, the rheumy said I did NOT need an ENT. He refered me to my primary care Dr. again. I chose to see an ENT anyway, thats when the ENT scoped my nose and found hemorrhages. I walked away with Nasonex, which really doesn't help. But more importantly I also walked away with a hand written note from the ENT stating his findings.

Dr. Koening will cost thousands less than Mayo in Az. Funny, eh? But that's the insurance network can-of-worms. My primary care is prepared to act on behalf of Dr. Koening, I sure hope this all works like I'm anticipating. It feels right.

Michelle!!! Hi. Thank you for stopping in. That made me smile. I want to share the story about how we "met" because it's nothing short of a miralce, but I'm worried about being long-winded. I'm going to do it anyway...because I think it's cool.

After learning the words Wegener's Granulomatosis from reading my lab report, I googled. I became confused and worried. Not sure what to do, I continued with my daily tasks.
A friend of mine was hosting a garage sale/fundraiser for her baby that was recently diagnosed with stage 4 cancer. As you can imagine, this brought much of the community together. While at the sale, I ran into a gal that I had not seen in years. She and I exchanged pleasantries, and went on our ways. That evening, we became "Friends" on Facebook.
Shortly after, out of desperation, I sent out a plea on Facebook. It was titled "Please Read to See if You Can Help Me" or something like that. Well... that gal read it. Her cousin had been recently diagnosed with WG. Her cousin is Michelle. She was my first real weggie contact. She has been helpful and kind. Her husband has even taking time to lend a hand. I'm really grateful to have been introduced to her. So, there you go. I call it a miracle because it was NOT coincidence. :)https://s-static.ak.facebook.com/images/blank.gif

Anna, I guess I've had both tests maybe? The times there have been blood was in the office (a dip?), and the clear results have come from a microscope (I think), but I still go to a lab for it. And I don't have menstrual periods (too much info? sorry) anymore. I only mention that because each time there's blood they always ask "are you having a period?" I always reply with "I don't have that anymore". Then proceed with "you might have to see a urologist for kidney stones". Whateva. It's all so old...I don't get disappointed much these days.

Thanks for the advice, everyone, on how to prepare, and your words of encouragement and wisdom. And thank you, Dear Marta, for helping to facilitate this"

[Al]

Thanks for clarifying these things, Nancy. About Mayo: I am guessing that their fees included a complete work-up (rather than a one-off consultation), which your insurance won't cover.

I've never met your rheumy, so I hesitate to to say anything. But, based on what you say, I have a problem with him. At the least, I it looks like you have a problem with him, which means that he may not be the right man for the job. All this might be "all so old", but how many of us have so many days to waste?

Please check back in when you learn what you can in Utah!

Al

[marta]

Al, you ROCK!!!! You know how I feel about you though. Now the world knows how I feel about you... ha ha . Thanks for answering Nancy's questions.

Nancy, if you need anything else let me know and I'll post again. I just wanted to bring this thread to the top in case someone missed it and had anything to add to a new person looking for wisdom from the old pros.

[Al]

Al, you ROCK!!!! You know how I feel about you though. Now the world knows how I feel about you... ha ha . Thanks for answering Nancy's questions.

Nancy, if you need anything else let me know and I'll post again. I just wanted to bring this thread to the top in case someone missed it and had anything to add to a new person looking for wisdom from the old pros.

(I wonder if she is using that term as a noun...?)

We're on your side, Nancy! We've got your back, if not, actually, your pain....

Al

[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 (http://www.vasculitisfoundation.org/node/1052)

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 (http://www.vasculitisfoundation.org/node/1052)

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. :wink1:

[Al]

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. :wink1:

Sangye is probably right, Nancy. What would allow point 2 to come into play is if you genuinely like your doctor and get the sense that he or she can, if encouraged, be a good team player. Otherwise, point 4 is the only viable option.

Al

[me2]

Nancy you are on the right track in going to see a specialist - especially given the poor treatment you are getting so far.

If I had not experienced these seem kinds of answers my self I would think you somehow got it wrong - the doctor must be right - right? Or at least close? Wrong. I like Sangye's summation. I have only had success with option two one time. The doctor I did it with is my primary care guy, the guy I saw first with WG over thirty years ago. As per Al's note, he is a team player.

I don't have time to tell the whole story so I will cut to the chase. About two years ago I was suffering terribly with acid reflux. He sent me to a gastro person. The gastro person scheduled me for examination two months later. I was in agony. I called my primary guy back and left a message saying I needed his referal to get seen soon. I got a call back from his secretary saying I had to work it out with the gastro people.

I was livid. As luck would have it I got to talk to a nurse from my ENT and she said
"You are not being treated right". I knew this also from studying my situation on the internet.
So, I called the Medical Director of the University and told him how I was being treated - or should I say not treated.
I got a call the next day from gastro saying they could see me the next day.

The next time I saw my Primary he said " So, you called Mike the Medical Director". I could tell he was affected by this, me reporting less than adequate care. I looked him in the eye and said " Yes , I did". Nothing more was said but I noticed a little different attitude. A better one. It could have gone the other way. He could have turned against me too. But I think he realized that he made a mistake in not listening to me.

The laundry list you have of not being listened to is very concerning . If it were me I would seriously doubt this could be turned around. His answers show a pattern of dismissal (and just plain being wrong) that is disturbing. Follow your best instincts. Don't settle for sub-standard care. I, along with the others, look forward to hearing how your trip to Utah goes. I have a very good feeling about it.
Write down all your concerns and have them in your hand for your appointment. Go through the list and don't let him leave until your list has been covered. Every visit I make to any doc I take a list - even if it is short. No more smacking my forehead when I get home and saying " Doh' , I was going to ask about blah blah".

[annekat]

Write down all your concerns and have them in your hand for your appointment. Go through the list and don't let him leave until your list has been covered. Every visit I make to any doc I take a list - even if it is short. No more smacking my forehead when I get home and saying " Doh' , I was going to ask about blah blah".

Lists are a good idea! But my lists get very long and a little messy, and I still have trouble mentioning everything on them, especially when feeling rushed. I have a good feeling about Nancy's trip to Utah, too, that she'll get better attention and care from Dr. Koenig. I look forward to hearing about it.

Good to see you back, me2!

Anne

[Sangye]

Great answer, Kirk!!

Anne, before I go to my appt I organize my list into Same, Better, Worse and New. I only briefly mention the items under "Same" that are big issues, just to remind the doc that they're big issues.

That's how I would check in with my own patients at each visit as well. And it also parallels the BVAS (http://rarediseasesnetwork.epi.usf.edu/vcrc/documents/BVAS%20Assessment%20Training%20Manual.pdf), making it easier for your doctor to score your disease activity level.

[annekat]

Great answer, Kirk!!

Anne, before I go to my appt I organize my list into Same, Better, Worse and New. I only briefly mention the items under "Same" that are big issues, just to remind the doc that they're big issues.

That's how I would check in with my own patients at each visit as well. And it also parallels the BVAS (http://rarediseasesnetwork.epi.usf.edu/vcrc/documents/BVAS%20Assessment%20Training%20Manual.pdf), making it easier for your doctor to score your disease activity level.

Thanks for the BVAS link, Sangye! Looks like a very valuable tool. I'd like to see the look on my doctor's face if I printed it, checked things off, and handed it to him! But I will certainly do it for my own benefit, at least, before making my own list for the doctor.

Anne

[Sangye]

The BVAS is what Wegs specialists use to determine disease activity. I imagine most non-Wegs specialists have never even heard of it.

[Nancy-S]

BVAS!!! What a great tool. I only skimmed over the document. What I gathered, so far, inspired me to take my medical journal and transfer it into a graph using BVAS.

Al, you are a gem. I'm not glad you're here... but I'm glad you're here. You are spot on, I DO want to wrangle my Doctor. I like him as a person. He's very kind, a little hippie-like. I sought him after a terrible experience with my initial referral. Dr. Bennett had years and years of experience, and had been handed the possible answer (WG) by my PCP. At my first appointment he informed me he would only monitor me for two reasons 1) dx is invasive and 2) treatment is toxic. I agreed but of course I don't know any better. It seemed as if we made a good team. Since then my C-ANCA and PR3 (are they different things?) are still abnormal (keep hoping they spontaneously fix themselves), and my UA and other blood tests are beautiful.

My body, on the other hand, is slowly showing more and more signs. But, he doesn't recognize the signs. He's only seen one other WG patient, and she "got sick real fast". For that reason, he likes to keep me close. But at the same time, he keeps sending me away. (okay, I'll stop...I'm just thinking out loud at this point).

Utah here I come. Each time I've seen a Dr. for something that's possibly related (and they blow off the possibility of wg) I smile, and simply ask for a written assessment that I can walk out of the office with. I have a small compilation of these hand-written notes on various business cards, note pads, etc. It's not a medical record, but will give Dr. Koening an idea. His office, after reading my records, was able to schedule me in January instead of April, I'm grateful for that! I'm a little pathetic these days. The nice thing about my pain is that I know, when I go to sleep, it will probably be gone in the morning. Well, not gone but in a new place. Two days ago I was happy to trade the feeling that someone crushed my ankles with a baseball bat, for a different joint pain. My least favorite new symptom is the eyes. Even though I'm a lot slower these days, I was still able to climb out of bed in the middle of the night or morning, and see. Now, not so much. I woke up with a migraine and stumbled all over the place looking for my medication. It takes a good while to get my vision. But that's just "dry eyes and old age".

Last October at the beginning of all this, I called Mayo...they seemed like a good local option. The appointment staff informed me that they would only give me a diagnosis, and not long-term care (after reading on here, I think it was incorrect info). Since my insurance didn't have a contract with them (Blue Cross Blue Shield, which they DO take, by the way, they just don't have a current contract with our employer) I was left to find a rheumy from my provider list.

You are all amazing, amazing, inspiring people. I have learned a ton from you already. I don't know why this forum is different, but it is. My husband is glad I'm here too. Thank you Marta for having the link on your blog and for helping me post. And thank you, all, for replying and extending a warm welcome. :)

[Al]

Terrific post, Nancy! And yet another chance to educate the medical community!

Yes, C-ANCA is pretty much a synonym for PR-3 (or, to be technically accurate, anti-PR-3 ANCA. The former is determined under a microscope; the latter from a blood test. Don't worry so much about the informal nature of your "records". Dr. Koening (who, by all reports, is an outstanding guy) will be at least as interested, for the purposes of the consultation, in your own feelings (though we will want to see whatever test results you have had). We are anxiously awaiting your report!

Al

[marta]

I'm so glad you're on here Nancy. It is quite an amazing place. I remember at first being a little peeved at everyone telling me that I need to find a Weg specialist. It felt like an impossible task living where I live to find someone who wouldn't take three days travel to get to. It was bumming me out quite a bit. So I stuck with my rheumy who was given to me by the hospital at diagnosis, and trudged along thinking everything was OK... it was until I had a flare and he left me wriggling in pain without even contacting my PCP when he said he would regarding medication and he also gave me a good kick when I was down by phoning me and telling me 'not to bother him with insignificant cold symptoms'. That was the night that I stayed up until 4am searching the 'College of Physicians and Surgeons' website for rheumies taking on new patients who have an interest in vasculitis. Then I cross referenced them with rate MD, and put the word out on my blog and throughout my circle of friends that I'm actively searching for a new doc. My current doc's name kept popping up, and boy am I glad I made the move. She's the best I could possibly ask for, and now I'm on the bandwaggon, get a doc who's seen this before - many many times - it'll be the difference between a long life with good quality vs the opposite.

I'm glad you're on here Nancy. I'm glad you found my blog somehow and we connected. Now we both await that magic day when our lives take a turn for the better - January 9th, baby. 2012, the year it all changes for the better.

[Sangye]

Last October at the beginning of all this, I called Mayo...they seemed like a good local option. The appointment staff informed me that they would only give me a diagnosis, and not long-term care (after reading on here, I think it was incorrect info).


I don't know if they've changed, but when I went to Mayo AZ (2007-2008) the rheumatologist said the same thing. I had no other option for a rheumy who had any idea what to do. Mayo AZ's rheumys aren't Wegs specialists but at least they're connected to Mayo-Rochester, a major Wegs center. I had to twist the guy's arm to get him to treat me. It was contentious. He kept wanting to put me back on massive pred and I knew I didn't need that. So he'd get upset and threaten to drop me as a patient. After 1.5 years of this I was thrilled to get to JHU and find a real Wegs doc. The difference was enormous. I don't fault the Mayo doc for not knowing what he was talking about since he did make it clear he wasn't a Wegs doc and that they didn't have any on staff in AZ.

[Dirty Don]

that they didn't have any on staff in AZ.

That appears to have changed there as my 'team' is comprised of one rheumy w/ WG specialization, the pulmi has treated far worse WGs, and the ENT is...well, she has her bag of tricks too for WG...it's been interesting to watch the response of you and others towards Mayo...I have had nothing but the best from the AZ clinic, yet I keep hearing stories that I have yet to encounter...including insurance problems as well. My best to those who want and need the best! Good luck to all!!

[annekat]

Good to hear things have changed for the better at the AZ clinic, and it offers hope that things will improve for some of the rest of us who have less than optimal care easily available.

Anne

[Dirty Don]

Good to hear things have changed for the better at the AZ clinic, and it offers hope that things will improve for some of the rest of us who have less than optimal care easily available.Anne

I think it's a perspective thing Anne. I've only been dxed since August this year...many of the experiences that people have had beyond me are about having the disease longer than me. I've been lucky, all things considered, I know that...I just keep pushing it cuz it is possible to get better care...in fact, Mayo does subsidize some of their work for patients who need/want them...I don't know how that works though...to apply that is. Or maybe it's just offered IF they take a case...not sure...in the meantime, I have nothing but the best to say about them...they push and prod, stick and poke, write me long lengthy notes on my visits there and send them to me personally, run me thru tests I've never even heard of before, are always thinking in the future, perhaps too much so sometimes!! LOL...and so it goes with me. I know some peeps can't access or afford their services, or Cleveland, or Johns Hopkins, or JHU...I am sorry...everyone needs access to some sort of proactive behavior in this disease...Mayo has become my source...whew...not bad for a guy who was in a coma and almost dead 4 months ago!! WooHoo!!! LOLOLOL! Gotta laugh, gotta laugh!!

[annekat]

I'm so glad you are doing so much better than in August, Don. I was dx'd in April and it was never that extreme, except that the lung thing had gotten pretty bad and I may have been dx'd just in time before things really went south. Yes, it is perspective, and it is human nature to be happy with what is working. I know I could try harder to look into some alternatives for myself, see what is covered by my meager insurance, etc., but am just now at a period of financial reassessment, having gotten disability, etc., so don't know if I'll be getting different insurance, or what. I'm fortunate for my Wegs not being very bad at all right now, not that Wegs is ever good. But I do realize the importance of preparing for things turning worse, and now I have time to sit down and explore options.

Anne

[Nancy-S]

I was happy to hear that you, Don, have a great group of Dr.'s interested in wgs working with you. It might be exactly what Mayo in Az needs to be on their way. I'm just guessing, but specializing is different from having a special interest. I love that your team has passion, and interest, and are treating you well. Because of their intense interest, I would love to offer up myself as a case for review. I've learned from our private messages that the insurance problem I encountered might be easily fixed (because the docs bill as individual physicians outside of Mayo). That might work for me! I'll give them a call today.

I'll still see Dr Koening, since he is exposed to this so often and specifically trained for it. If it's limited or early stages, or whatever, I know I can walk into the appointment with confidence and walk away from it with a plan. Goodness, I don't even remember where I got his name. It just all sort of fell into place.

As far as money, Mayo wanted a few thousand from me. University of Utah told me to bring $100. :) I don't understand how and why. It's all so confusing for me. I am thrilled to be able to see Dr. Koening and afford his $100 visit. The flight will cost just under $200, and I'm staying with a friend who will drive me around for two days. Anne, explore and research, and go with your gut feeling. You will know what direction is right for you.

[annekat]

Wow, I could afford $100, and Utah would be a long but doable drive from here. Thanks for the encouragement, Nancy.

Anne

[Nancy-S]

That's what we're all here for. Encouragement and, I might add, wisdom. I'm not all that wise, but I've sure learned much from everyone here. I think the mere fact we are here also shows our proactive side. .

[annekat]

That's what we're all here for. Encouragement and, I might add, wisdom. I'm not all that wise, but I've sure learned much from everyone here. I think the mere fact we are here also shows our proactive side. . Well, we are all looking forward, I'm sure, to hearing about your visit with Dr. Koenig and your overall impressions of the Utah center. And yes, I hate to think how much worse off we'd all be without this forum. It is truly a gift, and you are right that we are proactive by getting involved in it, but on the other hand, it was so easy... just do a search on Wegs and there it is! (Aside from the difficulties people have had lately, which it appears may be just about over.)

Anne

[Sangye]

I'm glad both of you are looking into getting the best care. It's great that Mayo-AZ has improved their knowledge base for Wegs.

[Al]

Nancy, I think most of us would gladly pay $100 to meet face-to-face with one of the best doctors in our part of the business, even if regular trips to SLC are prohibitive. (Hey, maybe we could grab a bus, kind of an "electric prednisone CTX test", à la Ken Kesey, and do a group consult!) Please give us a full report!

Al

[Nancy-S]

I sure hope the scheduler at UofU was correct. After communicating with Don, his visit was very involved. More involved than a $100 consult. I guess I'll know more aterwards. I hope he can order the labs/tests for me to complete in Arizona. But that's *my* plan. Dr koening might have different ideas. But yes! Let's arrange a group consult. What if he traveled the country in his own tour bus?

[annekat]

Nancy, I think most of us would gladly pay $100 to meet face-to-face with one of the best doctors in our part of the business, even if regular trips to SLC are prohibitive. (Hey, maybe we could grab a bus, kind of an "electric prednisone CTX test", à la Ken Kesey, and do a group consult!) Please give us a full report!

Al
Hey, Al, the bus idea is a good one! I think I would enjoy the road trip, as I haven't seen eastern Washington, and from that little corner where vdub lives, it doesn't look that far to Utah on the map. Just cut across Idaho diagonally and you're there. It's been a long time since I've seen any different terrain than around here, and it would be exciting. And yes, Nancy, the idea of a traveling Wegs doc is a fantastic one!

Anne

[mishb]

I am an Insurance Underwriter for buses and coaches and for the Liability of people traveliing in them.

From my "Underwriter" point of view, I would prefer that the good Doc came to you. :tongue1::tongue1:

How amazing would that be? No-one would have to worry anymore about long distance travel - let him do all of the work

[annekat]

I am an Insurance Underwriter for buses and coaches and for the Liability of people traveliing in them.

From my "Underwriter" point of view, I would prefer that the good Doc came to you. :tongue1::tongue1:

How amazing would that be? No-one would have to worry anymore about long distance travel - let him do all of the work It would be like the Bookmobile. But it would be the Wegmobile. (Unless someone insists on calling it the GPAmobile.)

Anne

[mishb]

It would be like the Bookmobile. But it would be the Wegmobile. (Unless someone insists on calling it the GPAmobile.)

Anne

Let's just have Phil send the Batmobile


But to get back on topic .... Best of luck with Dr Koening, Nancy. I hope you will finally be able to start stepping forward instead of taking two steps back.

[pberggren1]

Let's just have Phil send the Batmobile


But to get back on topic .... Best of luck with Dr Koening, Nancy. I hope you will finally be able to start stepping forward instead of taking two steps back.

Only one seat, sorry.