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[crackers]

hi brande.that's great that you've got things moving.yes you should write everything down even the smallest detail that you might not think relevant,because i can bet you'll come out of there and remember something you should have mentioned.my wife,sue,also feels helpless and frustrated that she can do nothing but you're spot on with the love and support,it can mean so much when you're feeling low.anyway good luck and stay healthy.
john

[Sangye]

Brande, I am SO relieved to hear this. You've been on my mind a lot. Yes, as John said, write everything down. If you don't remember exact dates, maybe just the season and the year, maybe just the year. If you have any records (blood tests, x-rays) bring them.

If you have a PCP, bring their name/address/phone. Mayo docs will work closely with them and will automatically send them all your records each time you go. They'll also send you copies without asking, which is great. Keep them.

Here are other things they may ask :
1) The environmental/ life circumstances when it began and when it's shown up (eg, Did you have a cold/flu first, were you exposed to toxins or mold, high stress).
2) What made symptoms better or worse?
3) How has your health been in between the times when it's been a problem?
4) Sometimes doctors ask : "What do you think it is?" This might throw you off, like why's the expert asking me? Good doctors know we all have a better sense of our bodies than they do.

Mayo is highly organized. It's very big and you'll go to several floors. If you can't walk far, you can get a free wheelchair at the main entrance. They'll even offer to push you if you're alone. First you go to the check in and they give you an itinerary for the day. Mayo runs right on time, so make sure you get to your appointments a few minutes early. Even the labwork is scheduled! Each time you go to a new appointment, you go to the check in on that floor.

Look at my message "Tips for Dealing with Doctors" for more stuff. Write down questions you have ahead of time and don't be afraid to ask more. Your husband (or anyone else) can go in with you and ask questions, too. They understand that it takes a village. Everyone there is so kind.

[Lady Bug]

I'll be seeing Mertz, Lester E. M.D. Sangye, were you able to meet him? I think it's nice that they have the pictures of them on the site. I read over their insurance and health plans so I know what to expect with billing. My husband, Ty, got the member numbers for our insurance this morning.

I was reading something on the internet that referred to WG as being "active" I'ts been such a long time since I had the blood test that confirmed it. Does the status of your blood change over time or does it stay the same until treatment? I wish I could take one you with me lol. i didn't realize that so many of you are around the world. Crackers, Sangye, how have you been feeling?

[Sangye]

I didn't meet Dr Mertz. I like seeing the pics, too.

"Active" disease means the symptoms are flared up. The disease is in it's most dangerous form then. For some people, the difference between active and remission is like night and day. For me so far, I've always been somewhere in between, in a constant state of minor flare. Everyone is very different.

As far as blood tests, some change with active disease and some might or might not. Because Wegener's is an inflammatory disease, 2 indicators of inflammation (ESR and CRP) will go sky high when it's active, and lower as the treatment works. The ANCA is more specific for Wegener's, but is not always a reliable indicator of active disease. Ideally, the ANCA would be high with active disease, decrease as the treatment is working, stay low or even go negative when in remission. My ANCA has never been a good indicator-- stays sky high no matter what we do.

Dr Mertz will explain all this in much better detail.

On your first day, you should expect to do bloodwork, urine and a chest x-ray at a minimum. He'll likely order a chest CT scan. There is a possibility that he'll hospitalize you to begin treatment immediately. I don't want to scare you with that, just to give you a heads up. Please don't hesitate to do it if he feels it's necessary.

Meanwhile this weekend, rest and enjoy yourself a little, 'kay? Monday morning will come soon enough.

[crackers]

good luck on monday brande i hope everything goes well for you.as for myself i've been feeling a little rough lately.just briefly started feeling unwell xmas 06 diagnosed with possible wg in feb 07 had many tests done and in oct 07 while undergoing a colonoscopy they found a tumor.this was removed but the bowel perforated and a stoma was put in place.i spent a week in intensive care and a couple more weeks on a general ward.the stoma was reversed sept 08 but leading up to that i was feeling pretty good with wg.i was able to walk the dog for about a mile before collapsing in a heap but since the reversal it's a struggle to walk 100 yards and the dreaded cough is back with a vengeance.the doc has upped the steroids so i'm feeling a little better. anyway again good luck on monday,let us know how you get on when you can.
john

[jola57]

Hello Brande, I am glad that you listened and are going to see a specialist. Sangye will know the best docs and routines for Mayo Clinic, I hear its excellent. Now you have to listen to the doctors, especially the rheumatologist, and do what they say. No skipping out on tests or medication that you may be put on. It is very important. This illness of ours can get worse without any warning and it can be dangerous not to take medication. Good luck on monday, hope all goes better than expected

[Lady Bug]

Hi Jola!

I will definitely listen to him. I don't want to do anything to prolong finding out what's going on. My husband was trying to get our insurance numbers Friday...the cards came in the mail Saturday!! The lady I talked to said that we need a PPO and not an HMO. Ty had no idea what he selected, but we do have the PPO, so I'm all set. Thank you so much for sharing your concern.

John,

I hope you feel better. You and Sue stay strong. Please take care of yourself and keep us updated. I haven't been able to find support groups. I know that all of us aren't married and may not have family. It's hard for people with support. I can't imagine what it's like for someone on their own. I'll do more digging. God Bless.

[crackers]

good luck tomorrow brande.tell ty he is welcome to post on here.you are not alone we are all here for you.
john

[Lady Bug]

It's so early lol. I usually drink hot tea to get me goin, but I'm fasting. Well, I'm getting the lil one out of bed and we'll be off shortly. I have to take him to school and from there on I'll have the wonderful listening pleasures of Andy McKee and Norah Jones. I was up forever last night watching Hans Christian Anderson.....I love Danyy. I better go my husband is giving me the "look" (I think he's nervous) lol Thank you much to all of you. Have a good one!

[Lady Bug]

Hi guys. Today was interesting. Mayo is about 40 minutes away from where I live and I didn't realize it was IN the mountains. It's very beautiful out there. They are very organized and polite. I was thinking about all of you the whole time. I wanted to kidnap someones laptop and log on .Everybody was warm and welcoming. Dr. Mertz is nice and he still looks like his picture .....with the exception of some graceful grays.

I told him about my medical history and he asked tons of questions. At first he said he didn't think it is WG (but he was still testing for it. My ANCA test a few years ago is what raised the WG questions) , but when we talked about my breathing and constant sinusitus he didn't like that so he's doing the ANCA again. He ordered: chest x-ray, blood and urine labs, hearing test (been having problems), breathing test, skin allergy test, endoscopy, and a physical. I completed 3 today (chest, blood, and urine). They broke it up into 3 different days. I go back the 21st, 29th, and Feb. 11th. They took a lot of blood......I ate like a bear after .

Well, we're all home settling in. I can get back to some hot tea and regroup for work. I told him how supportive you have been and that you helped me get here. Thank you Angels.....have a great nite.....

Has anyone heard from Andrew? Is he ok?