At the new Mayo Vaculitis Center

[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!

[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.