At the new Mayo Vaculitis Center

[Minneapolismark]

First day went well. Dr. Ulrich Specks is a cool dude. Having tests all week. No orifice will be neglected. :biggrin1:

Kahler Grand is right across the street. Nice restaurants although I have to fast until Thursday night. Specks set up a whole battery of test this week on the spot. Very cool.

The Dove Bookstore has hand painted military models (I just happen to think they are cool.)

Shuttle bus runs from MSP airport all the way to Rochester.

Specks really seems to be on top of things. Cool accent too. :biggrin1:

[elephant]

Wonderful Mark, you are going to get great care. Cheers to your health!

[pberggren1]

That's awesome Mark. To be at a center like that is where we are going to get the best overall care. All the Wegs docs work as a team and mainly just see Wegs patients, from Rhuemys, Nephs, ENTs, etc.

[LisaMarie]

Mark,
Happy to hear all is going well....Just got my appointment card and am hoping they put me in the right clinic...my card says it is in the Gonda Building ..but my concern is that it say the appointment is for a focused lung evaluation only".....Is that what yours said?...When I called i asked for the new Vasculitis Center Dr Specks was heading up...so if it is wrong please tell me so I can call to schedule the right clinic....my WG is maining sinus and trach, right hearing lost and left carotid?......I am hoping to have all the test he needs done prior to going up......or atleast most of them.....please keep up posted....i will be driving atleast 2 hours each day to get there since we are staying in minneapolis and opting on the 5 day pass for parking ......keep us posted and good luck

[Minneapolismark]

Your info is right. The vasculitis center is in the Gonda building.

I was scheduled for a one hour pneumatology consult which turned into five days of tests, labs and consults. Everything from colonoscopy to neurology to opthamology and so on. Then Friday late afternoon a wrap up with Specks again.

The cool thing is that they operate as a team, and even the neurologist is a Weggies specialist. Very cool.

Be sure to get there early to fill out paperwork.

There are loads of shops and restaurants to kill time in the underground walkways between buildings.

[Psyborg]

Sounds like things are going well for you. Glad you were able to get in to a Vasculitis center and start getting the specialized treatment:)

[Brooke]

Boy I feel silly saying this but I have been to Mayo Clinic many times and I didn't realize that the vasculitis center was in the gonda building or even that there was one. I'm real observant huh?:blushing:

[LisaMarie]

it s a new clinic.....so u r fine...thanks for the update Mark plan on sending all my records 2weeks in advance plus hand carry them in....hope i don't have to stay a week but will do what o gotta do...fasting would be hard on prednisone ...keep us posted thanks

[Sangye]

The cool thing is that they operate as a team, and even the neurologist is a Weggies specialist. Very cool.

THAT'S why it's important for Weggies to go to Vasculitis centers whenever possible.


There are loads of shops and restaurants to kill time in the underground walkways between buildings.

Mayo has that down better than JHU. The JHU campus that has the vasculitis center is in a bad neighborhood of Baltimore.

Mark, why do you have to fast for several days? What are they testing?

[elephant]

I am wondering if they are doing a colonoscopy.

[Sangye]

Do you have to fast for several days for that?

[elephant]

It is one day of drinking some awful stuff and staying on a clear liquid diet. I don't know of any test that has someone starve for more than two days, because they usually want the gut active and moving.....no ileus please!

[Sangye]

Yeah, I can't think of any, either.

[Minneapolismark]

Yes, colonoscopy is part of the week-long festivities. Another cool fact.... The Grand Grill in the Kahler Grand Hotel has Special menus. I told the waitress I was on clear liquids and she listed the foods can have.

[LisaMarie]

r u getting an upper and lower or just the lower?...did they give u a reason for all the test?..thanks for keeping us posted....u know i can take the travel in mileage off on your taxes....having my tax guy check into food and lodging....hopefully there is a clause somewhere

[Minneapolismark]

Just lower. I'll give you all a recap Friday, but he is chasing down all the areas that are symptomatic. Pneumatology (I am sitting in the lab right now waiting for the inhaler to wear off for more test in the tank.)

Blood work, CAT scan, neurology, sleep medicine, colonoscopy, etc. So they are examining each system separately and then integrating the results.

This is a whole different kind of medicine than I had before. Everyone I am seeing sees Weggies on a regular basis. They take all the symptoms seriously and never say "oh that's just the Meds."

[pberggren1]

[QUOTE=hopefully there is a clause somewhere[/QUOTE]

Yes, that would be Santa Clause at the North Pole.

[LisaMarie]

rotf....good one Phil.....i am just greatful they opened it and i am going..thanks again Mark for the heads up....

[Minneapolismark]

First of all I am very glad that my wife came along with me. I didn't think it necessary but all the activity has me pooped and inattentive.

1. I arrived Sunday night at the Kahler Grand Hotel. If you come make sure you get one of the hypoalergenic rooms. They disinfect the room, put in a powerful air purifier and use high linen count bedding.
2. My first meeting with the good Dr. Specks was Monday in the Gonda Building, 18th floor, Desk 18 south, Division of Pulmonary and Critical Care.
3. When you first enter the Gonda building on the ground floor, you need to check in. This is handled by a big room full of folks. The whole thing looks like a bank and the process is similar to checking in at the airport. I would be sure to get there a little early in order to get easily through the line. The line can be long but they do a nice job moving people through. You will get registration documents in advance with a self addressed/stamped envelope. It will really help get you through quickly if you fill this in ahead of time.
4. You really need to bring your medical records in hand. Your home clinic will send them but it seems they rarely arrive.
5. I met first with a medical assistant who take basic demographic information, my height and weight.
6. Dr. Speck's nurse comes in next and performs an interview, entering information into the computer.
7. Dr. Speck's next arrives. He is very fit and well groomed and has a reserved but charming manner. His interview lasts quite a while. He is the quarterback. He is the general. He coordinates stuff.
8. He sorted out my symptoms into GI, neurological, sleep, and lung issues.
9. Although I only intended to be here for the day, we worked out a schedule to get all the tests in this week.
10. I went for blood work. (everything is very fast and professional with little wasted movement. At the same time the staff is generally friendly and courteous).
11. Went out for decent meal before entering into my clear liquid diet.
12. Took my Mtx injection and slept for about 14 hours.
13 Got up late morning and went to the CAT scan. Very slick and very fast. Didn't even need to remove any clothing.
14. Went back "home" to the Kahler and rested and read.
15. Went over this afternoon for my Pulmonary Function Test. Never had one before. No pain involved but it is surprisingly difficult to do all the breathing exercises.
16. Tonight I take some medication and will then poop for the remainder of the evening.
17. Tomorrow I will take the medicine again and poop some more.
18. Then my colonoscopy tomorrow afternoon.
19. Tomorrow dept of Opthamology to see why my vision is doubled and my eyes are sore and red.
20. Tomorrow will be a neurology consult because I have a lot of nerve-related issues.
21. Friday is the Center for Sleep studies to find out why I have restless leg syndrome and keep losing time during the day.
22. 4PM Friday is my wrap up consult with Dr. Specks

Here are a few tips.
1. The Kahler is not a great hotel anymore, but it is virtually part of the Mayo complex. It is really nice to pop to the room for a couple of hours between tests.
2. Get to the check-in station for each procedure at least 30 minutes early. They often have paperwork for you to fill out.
3. Bring a book or an iPad or a Kindle or whatever so you have something to read.
4. At your first appointment, if you go on for more tests, you will get an information packet. Read the whole thing to figure out what you need to do for prep and where you need to go. The one hiccup in the system is that no one went over the contents of the packet with me. Were it not for my wife I would have messed up my schedule as I am not thinking super clearly after my Mtx injection.

[Minneapolismark]

Am trying to think of my own "worst case" tests just for fun.

So far I have the "Nuclear Stress Colonoscopy." It would involve getting pumped full of vaso-dilators and running on a treadmill while they perform a colonoscopy. It would be a real bummer of a test.

I also thought about a "Nuclear Stress Sinus Biopsy." It seems anything preceded by the words "Nuclear Stress" is a lot less fun than the regular kind. :-)

[elephant]

LOL Mark! If your running on the treadmill with all that poop juice you will be wearing 10 depends so you don't slip and slide. EWWW...ok that was Gross!

[pberggren1]

LOL Mark! If your running on the treadmill with all that poop juice you will be wearing 10 depends so you don't slip and slide. EWWW...ok that was Gross!

Now elephant, get it right. This should have been posted under funny stuff.:laugh:

[LisaMarie]

:w00t:Mark
Thanks for all the heads up...i plan on mailing all the medical recoreds myself 2 weeks in advance with receipt of delivery plus hand carring them in...i am hoping it will be ok to travel back and forth but will look into the hotel just in cause......My sister in law in coming with me to keep me straight....i had to laugh over your worst fear......just think of the poor staff that would have to clean up that mess...i use assist with the stress test here at my hospital till I got sick.....so I can reaaly relate to Lord what a mess....Hope you get more answers on friday....keep us posted.....have a great day :biggrin1:

[Sangye]

Sounds like Mayo Arizona. They have a much more patient-friendly system than JHU. At Mayo there was one Scheduling Dept that booked all my appts and would get them all on one day when possible. I'd arrive at the main check in and get the day's itinerary. (They mailed it ahead of time too) It wasn't as hard to get into a bunch of specialists the same day and they handled that for me. All the docs were in one building. And they had volunteers at the entry who would take you in a wheelchair to any of your appts.

JHU doesn't have centralized scheduling at all. And it's ENORMOUS. You have to call each specialty clinic for appts and make it work yourself. When Dr Seo wants me to see various specialists or have tests, I have to set them all up and it can take weeks or months to accomplish his list. If I hadn't gone to Mayo AZ first I wouldn't know any better. That was sure nice! :rolleyes1:

[drz]

Just lower. I'll give you all a recap Friday, but he is chasing down all the areas that are symptomatic. Pneumatology (I am sitting in the lab right now waiting for the inhaler to wear off for more test in the tank.)

Blood work, CAT scan, neurology, sleep medicine, colonoscopy, etc. So they are examining each system separately and then integrating the results.

This is a whole different kind of medicine than I had before. Everyone I am seeing sees Weggies on a regular basis. They take all the symptoms seriously and never say "oh that's just the Meds."

I t sounds like you are getting the royal work up they used to give visiting kings, sheiks, and VIP celebrities. Since Mayo doctors are salaried they have no financial incentive to give extra tests so they must think all those tests are necessary to get an accurate picture of your current treatment needs. Good thing you have good insurance cause the average person couldn't begin to pay for all those tests. I wonder if they will now do this type of workup for all their current Wegener's patients. It also helps explain why the Mayo can't afford to take Medicare patients since Medicare or Medicaid only allow about 17 cents on the dollar for the vendor and they would lose a lot of money with all those tests. It will be interesting to hear your final impressions and their treatment recommendations after this extensive workup. Had you even heard of some of those tests you are doing? Hope they come up with some good answers for you and a plan to give you some quick improvement.

[Sangye]

drz, are you sure Mayo doesn't take Medicare? When I was treated at Mayo AZ it was packed with senior citizens. I can't imagine that they'd have so many if they didn't take Medicare. That was in 2008. Maybe it's changed?

[drz]

drz, are you sure Mayo doesn't take Medicare? When I was treated at Mayo AZ it was packed with senior citizens. I can't imagine that they'd have so many if they didn't take Medicare. That was in 2008. Maybe it's changed?

The had info in papers last year about this change. Some times a clinic will continue to serve present patients but won't take any new ones when they make these changes. Recent cuts in the Medicare benefits and proposed cuts make it very likely that more and more private facilities will go this route if they want to stay in business.

[Minneapolismark]

One of my few advantages in life is that I was born at the Mayo 52 years ago. My patient ID identifies me as one of "the originals," and that helped me get in. As one nurse said, "not many of you originals left.". The mayo gives preference to long-term patients.

I agree that all should have access to this care. The Mayo Foundation may provide assistance. Worth checking.

[Sangye]

Thanks for the info drz. I wonder how the Mayo AZ facility will continue to run, since it's in Scottsdale-- tons of senior citizens. What a sad situation that we have--entire populations of people denied equal access to care.

Mark, is your patient id 007? :laugh:

[Minneapolismark]

If I told you I'd have to... :)

[Minneapolismark]

Another tip... When you get done with the poking and the prodding there is an awesome little chocolate shop called "The Chocolate Oasis" in the subway (underground walkway between buildings). I used it to reward myself after the colonoscopy.

[Minneapolismark]

Here is the link regarding the Mayo Medicare and Medicaid. It also mentions charity and financial assistance options. Billing and Insurance Information for Mayo Clinic in Rochester, Minn. (http://www.mayoclinic.org/billing-rst/)

[Terri]

Speaking of tests......I'm not going to the Mayo but I am having a scope (upper GI) done tomorrow and was wondering if I should be concerned about anything. Sangye always has good advice as to what to avoid, what to ask the Dr. etc. Thanks for any suggestions.

[Sangye]

LOL I have no idea! Did your doc discuss the reasons, risk and benefits thoroughly I hope I hope?

[Minneapolismark]

There is a WIDE variety in sedatives used. Some of the older Meds can really mess you up. Drink Gatorade G as part of your hydration (for the electrolytes). Bring your CPAP if you have one. Make sure some comes along to drive you and stay with you for he remainder of the day. I am not Sangye, so hope it is OK that I answered.

[Minneapolismark]

If you want to go to the Mayo Clinic but can't afford it, please call 507-266-5670. Note that the Mayo will also work with people ho are not US citizens.

[Sangye]

I am not Sangye, so hope it is OK that I answered.
Sangye didn't have any advice. :biggrin1: I'm glad you helped, Mark.

[Minneapolismark]

Always thinking of folks.

Seriously, the whole time i have been here at Mayo my constant concern is finding way for my fellow Weggies to get this level of care, if you choose to do so. I will do all I can to find the right phone numbers, etc. No one should suffer under inadequate health care due too economic or geographic limitations.

When I was working as a strategist and IT director my entire purpose was to move healthcare out of the episodic and idiosyncratic (and autocratic) methods dating back to Hypocrates and develop a metric-driven "project managed" team approach to healthcare.

The mayo seems to be leading the pack, but most other health care organizations are a rendered marginal because there is no cohesion, limited coordination, and very limited authority.

At any rate, I never enter the Mayo buildings without scheming to find ways to bring you all here too, or at the very least bring the Mayo's guidelines to your healthcare system.

[Minneapolismark]

Oh, and they DID find and fix some nasty little bleeding boo boos in my intestines today. Woo hoo.

[pberggren1]

Oh, and they DID find and fix some nasty little bleeding boo boos in my intestines today. Woo hoo.

Mark, can you elaborate more as to how the bleeding was fixed?

[Minneapolismark]

They cauterized some bleeding areas in my intestine.

[dunkie2202]

and have you found out what has caused this bleed? Good luck to you Mark you seem to be in the right place gettine the right attention :smile1: :thumbsup:

[pberggren1]

Oh, and they DID find and fix some nasty little bleeding boo boos in my intestines today. Woo hoo.

How did they find or know that your intestines were bleeding?

[elephant]

They found it through the colonoscopy, the scope that has a little light and camera. I know this from taking care of patients.
Mark are you a little anemic from the bleed?

[Sangye]

I think it's great that you're posting info about Mayo's financial services Mark. All hospitals have financial assistance but won't provide it until your own resources are exhausted. Mayo AZ wasn't a provider with my private insurance, so they couldn't cut deals. My insurance paid the maximum they could but Mayo's bills were outrageous. Mayo did a one-time charitable write-off of the huge amount leftover from my initial workup but made it clear that they wouldn't do it again. Each time I saw my rheumy it left me with a few hundred to pay.

[Minneapolismark]

Well I am not sure just yet. I haven't had my debrief yet, that will occur Friday. But I think they were cauterized. The knocked me out right away. Will let you know. I was still pretty high when I wrote that.

[Minneapolismark]

Just got out of my opthamology visit. Very thorough. Nice to have everyone know what Wegener's is. They seem to use he term "Wegener's Disease" which us probably more accessible.

No eye problems beyond the normal tear duct, weeping, sinus pressure stuff.

Everybody was easy to work with. Had my chocolate (HIGHLY recommend the toasted coconut chocolate cup at the chocolate oasis). Exhausted. Time to nap before neurological.

Why couldn't Specks (or a designate) provide remote consults? Testing could be done regionally. The critical piece s having someone who understands the big, integrated picture. It is the systemic integration that is missing in my experience. that is what the Mayo provides.

[LisaMarie]

OHH LAA LA....CHOCOLATE REWARDS!!!!!...:flapper:.Mark news gets better and better...tomorrow you may get all your answers...i am slow gathering info for my trip....i know we can take mileage off in taxes...my tax guy is looking into lodging and food since it is related to tavel for medical treatment....i looked into your hotel but $129 plus taxes a night is too much for me so I am hoping the drive back and forth to Minn won't be so bad...and they have rest rooms in the hospital and a lactation room for my sister in law who is nursing her baby so we may be ok hanging out all day...just take it one day at a time.....Thanks for keeping us posted
have a great rest of the day.:biggrin1:

[pberggren1]

Mark, when this is all done would you be able to give us a price list on everything you had done, like what everything cost in detail and what the total bill is? I would like to know for future reference because I do not have insurance that would cover a trip to Mayo.

[Minneapolismark]

Will do. You can also call the billing office for an estimate.

The interesting thing is that Dr. Specks determined the need for a colonoscopy based on my self-reported abdominal pain and change in bowel habits. So, this should have been caught earlier.

[drz]

Here is the link regarding the Mayo Medicare and Medicaid. It also mentions charity and financial assistance options. Billing and Insurance Information for Mayo Clinic in Rochester, Minn. (http://www.mayoclinic.org/billing-rst/)

Thanks for posting this. It makes an interesting read. It says they will take Medicaid for patients from Minnesota and bordering states but no other states. It will only accept Medicare assignment from Minnesota residents so others will be responsible for the roughly 86% that Medicare does not cover. This may be their official position but yet I know of a case last year where a Minnesota resident with Wegener's disease was in a small hospital in North Dakota and the Mayo refused to accept the patient on a transfer. The family believe it was because the patient was on Medicare, but Mayo official response was the patient could get all the care needed at the hospital in ND. No one else believed this and the doctors finally aranged to transfer the patient to a large hospital in Minneaplis where they had experience treating Wegener's. Mayo (Dr Specks) did then consult with treating doctors on patients care but probably more so because of personal relationship between the two physicians.

[Minneapolismark]

OK, the first flaw in the Mayo machine... My neurologist is their Wegener's guy in the neurology department. Great guy but he seemed to be unimpressed with the whole Wegener's motif. I have no permanent nerve damage, which us great, but he actually said he had no idea why I was seeing him! Not a big deal, but I am trying to give you an accurate picture of the experience. I had the impression that, if there was no permanent damage then the underlying cause is not neurological, and the treatment will focus on Wegener's mitigation and control, and not on neurology.

Still, after the appointment I frankly felt kinda stupid for wasting his time. But, as my loving wife points out, the leading expert in the world made the appointment, I did not.

[Minneapolismark]

Yep, the Mayo has a reputation for only accepting convenient patients. Don't know if it is true, but that is what they say. It started in the 1800's in response to a category 5 tornado here in Rochester MN. There were no medical facilities or trained personnel, so the Mayo brothers started a hospital (St. Mary's) and started training medical personnel to staff it. So, they definitely take care of Minnesotans first. You see a lot of elderly Scandahoovian farmer-types and quite a few Mennonites and Amish in the mix along with oil sheiks and celebrities.

Still, I would give it a shot. I would go so far as to come here for something routine to get a patient ID as that is the magic key to the kingdom. That would make it way easier to get in later.



Thanks for posting this. It makes an interesting read. It says this will take Medicaid for patients from Minnesota and bordering states but no other states. It will only accept Medicare assignment from Minnesota residents so others will be responsible for the roughly 86% that Medicare does not cover. This may be their official position but yet I know of a case last year where a Minnesota resident with Wegener's disease was in a small hospital in North Dakota and the Mayo refused to accept the patient on a transfer. The family believe it was because the patient was on Medicare, but Mayo official response was the patient could get all the care needed at the hospital in ND. No one else believed this and the doctors finally aranged to transfer the patient to a large hospital in Minneaplis where they had experience treating Wegener's. Mayo (Dr Specks) did then consult with treating doctors on patients care but probably more so because of personal relationship between the two physicians.

[drz]

OK, the first flaw in the Mayo machine... My neurologist is their Wegener's guy in the neurology department. Great guy but he seemed to be unimpressed with the whole Wegener's motif. I have no permanent nerve damage, which us great, but he actually said he had no idea why I was seeing him! Not a big deal, but I am trying to give you an accurate picture of the experience. I had the impression that, if there was no permanent damage then the underlying cause is not neurological, and the treatment will focus on Wegener's mitigation and control, and not on neurology.

Still, after the appointment I frankly felt kinda stupid for wasting his time. But, as my loving wife points out, the leading expert in the world made the appointment, I did not.

Be thankful your wife is so wise! Look for the over all rating and if 98% of the interactions are positive and pleasant that is very high index for customer satisfaction. Apparently the neurologist didn't understand the concept and value of ruling something out. Strange?

Keep reporting.

[Jack]

I think I must have been to nearly every department in my hospital to have things checked out, often with no very useful result except to add to the list of I Don't Know. :wink1:
Few of them have made me feel that I was wasting their time, but you meet all sorts, from the friendly and helpful to the downright rude.

[Sangye]

A couple years ago Dr Seo sent me to a neurologist at JHU. After the history and exam she said she was fairly certain everything was okay, but she ordered 3 MRIs to make sure. She said to come back for a follow-up in a couple weeks when the MRIs were completed. At the second visit, she walked in the room and asked "What are you doing here?" I was like "Um, I have an appointment." She said "Frankly I'm surprised to see you. I told you everything was fine." I reminded her that she asked me to come back but she acted like that wasn't true. It was so bizarre! If everything was fine, why did she order 3 MRIs??? :thumbdn:

[Minneapolismark]

Yep, it is all good. Just had a pred mood swing. ;)

[Minneapolismark]

OK, so here is the summary from my visit to the Mayo clinic. The bottom line is that I am responding well to the meds and my disease is under control.
* I need to keep on with the Mtx, pred etc.
* Dr. Specks is going to continue to see me on an ongoing basis.
* I have some scarring in my lungs but it isn't getting any worse and is nothing to worry about
* I have a couple of other health issues that are completely unrelated to Wegener's, so don't worry about your colons etc just because I had some things going on during my tests.

The bottom line for me is that I had another health issue that was getting lumped in with Wegener's and needs to be dealt with separately. Without seeing a Wegener's expert there was no way for my rheumy to know what was, and was not, Wegener's.

So you may find out that things are not as bad as you feared them to be!

[Sangye]

That's great news, Mark. Clarity is a very good thing. :biggrin1:

[elephant]

Thanks for sharing Mark. Cheer to good health and that your WG is being managed superbly!

[Joy]

Thanks Mark for all your info on Mayo-very helpful. So glad you got there & are now receiving such great & thorough care!

[LisaMarie]

thanks for sharing....u have put my mind at ease about my trip up there have a great weekend...hopefully i won't see that neurologoat....or i may just have to bring a box of milk duds with me....u know me saying what comes to mind on prednisone ...milk duds r my only saving grace...lol

[Minneapolismark]

Here is my biggest take-away from my trip to Mayo-- the disease is not the boss of me. WG is so big, vague, bizarre, and there is so much mis-information out there that it is very easy to get overwhelmed. Please understand that I know you are all suffering; I am not trying to minimize that fact. But our situation is far from hopeless, and there is a great deal that the medical profession can do for us. We just need to work with people who have the facts, and that is not going to be your neighborhood MD. It isn't that they are dumb or poorly trained, it is just that it is confusing for them too.

I had an eye infection and my rheumy told me that it looks like blepheritis (a benign, non WG nuisance), but for all he knew it could be that I was about to lose an eye to WG. We both looked at photos in his database, and blepheritis presents a lot like WG attacking the eye. My rheumy is a good guy, and it turns out his treatment plan was mostly right on target, but WG is obviously outside his scope.

When i met with Dr. Specks, he asked me what I hoped to get from the Mayo, what it is that I wanted from him. I told him that WG is a systemic (throughout the body) disease, and that medical professionals are looking at the various problems independently--no one is integrating things into a big picture.

He stepped up to that role, and ordered a ton of tests covering the various body systems that are causing me trouble. It turns out my lungs are scarred and one has started to slightly collapse, but all of that is arrested. It isn't going to heal, but it isn't getting worse. Oddly enough it turns out that my lung function is at or better than normal despite my problems.

My paralysis and other neurological symptoms are, as the neurologist said, ancient history. They aren't there now and there appears to be no permanent damage.

I am seriously overweight and want to undergo bariatric surgery. I had been told that this is not a possibility for me, but Dr. Specks said that the vascular center would work with me and the bariatric center to pursue a strategy for me to undergo the procedure.

In other words, WG is not currently on a rampage and I need to stop worrying so much about it and get on with my life. My life isn't going to be the same again, but as he put it, I need to start getting to know the "new me." Like it or don't like it, this is the way it is.

The key thing with Specks and the Mayo is that they were able to pull apart my various problems and determine what is, and is not WG related. Once having done so they now can manage the WG and help me deal with some other issues I have that were masked by WG and some of the meds.

My best advice for my WG family is to get reliable information any way you can, develop a hobby that isn't related to WG, and start thinking about goals and dreams to help you see beyond the moment.

I know that most of us are on prednisone, so I recognize that this is going to royally piss some of us off, but I found that my identity had gotten wrapped up in WG. I swore that wouldn't happen, but it did. I found I had mixed emotions about having the WG arrested (not causing more permanent harm) because it had become the focus of my life, my thoughts, my fears and many of my relationships.

I am not a disease; I am a man (husband, father, friend, son, cousin...) who happens to have a disease.

[pberggren1]

Thank you Mark. Very well put.

[jola57]

yes indeed very well put Mark, thank you

[elephant]

Mark thanks for your insight and sharing with us. I bet you feel like the elephant is off your back now!

[Sangye]

Great info, Mark! :thumbsup:

[drz]

It sounds like a week well spent.

[JanW]

Great post, Mark.

I certainly think that when you first joined here that the disease was defining you, and I'm glad to see that the psychological benefits to your week at Mayo seem in line with the physical ones as well.

[Minneapolismark]

Here is a quick followup to my Mayo visit. I had a couple of other health problems that had been lumped into my Wegener's symptoms but are unrelated. Now that they have been pulled out and are being treated separately, I feel much better--much, much better.

Also, the Mayo sent a very thorough package information including several narratives, test results etc. To my rheumy and also to me. It is just amazing to have a decent handle on what is, and is not, Wegener's.

Well worth the trip.

[Sangye]

I miss those nice packages of records Mayo always sent me automatically. My PCP used to crack up laughing because she'd get this huge pile every time. I think each time you go they send all your records.

[elephant]

Mark that is wonderful to know that you are getting the best care for WG! You are in good hands!

[LisaMarie]

Here is a quick followup to my Mayo visit. I had a couple of other health problems that had been lumped into my Wegener's symptoms but are unrelated. Now that they have been pulled out and are being treated separately, I feel much better--much, much better.

Also, the Mayo sent a very thorough package information including several narratives, test results etc. To my rheumy and also to me. It is just amazing to have a decent handle on what is, and is not, Wegener's.

Well worth the trip. I go on the 21st of February I hope I have as much success as you did ...but I am hoping not to have all the test you had...i still can t help but giggle about your dream/nightmare nuclear med stress test/colonoscopy combo...Lord help that would be a mess.. I will be staying in North Minneapolis part of the time and in Rochester on others...depends on what they have planned...I will visist that chocolate shop you mentioned...hope all is well with you.....as far as gastric surgery I had the lap band prior to my diagnosis and had great sucess...lost over 75 lbs and keep it off till I got put on pred..I felt banding was safer than a bypass...have had too many people with bad experience or poor result with the bypass long term....Have a great week