I was recently diagnosed with WG and am hoping there is someone near Rochester in SE Minnesota. Duane
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I was recently diagnosed with WG and am hoping there is someone near Rochester in SE Minnesota. Duane
Actually, you have Coffeelover (Lisa) in Saint Peter, MN. Shegothipslikecinderella lives in Minneapolis, though I realize that's north of your target territory. Seems like there are others. Maybe they'll reveal themselves.Quote:
Originally Posted by DuaneHart
Thanks Doug!
Duane,
I will be running through Rochester the weekend of the 22nd to help move my daughter to college in a nearby area. Maybe we could do coffee?
I have a good friend in Rochester and do go there occasionally. I only love about 2 hours away.
Oh! How exciting! This could be fun
LIsa coffeelover
Do a video if you can, or post photos. I'm excited, too: this could make Lisa the first of us to meet TWO weggies.
I don't think that we have any plans for that weekend. Might be a nice time to meet. I am very new to this whole WG thing and seems like something is happening all the time. I meet with my dr's next Friday and they are going to let me know which drugs they are going to start me on--Cellcept or Methotraxate(?). With all the other meds I take it I'm sure it is difficult for my doctors to figure things out--but I have faith!
Just a short, four hour round trip.... I'd try to do it.:)
Well, yeah-- your new BFF doesn't want you to ever be bored again. ;)Quote:
Originally Posted by DuaneHart
I'm jelous, canucks, except for Phill, just don't post so no chance for a meeting, even someone from Washington state would do.
Are you THAT desperate? An American? :eek:Quote:
Originally Posted by jola57
LOL-- Anyway, I knew it was just a matter of time before we could lure you over for a visit. Just, you know, leave your loose toenails at the border, 'kay? :D
I thought we had two people in British Columbia...:)Quote:
Originally Posted by jola57
(I'd come visit you, Jolanda, but I'm afraid your guys wouldn't let me in, or, if they did, my guys would stop me at the border on the way back!):)
Duane,
As the date approaches I will try to send you my contact information or a time and place we could meet. keep in touch.
Lisa
Doug,Quote:
Originally Posted by Doug
That would be awesome. three WEGGIES together! I hope Rochester is ready for us
Lisa:)
Doug, at this point I would welcome anyone:confused:. Geez Andrew maybe you should invite us over:cool:
Quote:
Originally Posted by jola57
I know, and put a few shrimp on the barbie!:)
Sounds good to me... Andrew? Andrew????
Yeah, invite us thinking ("Hey! No one will come. It's too far, they have to be available at home for medical treatment, etc. etc.", then a hundred people show up at his front door expecting entertainment, food, and a place to stay! I hope they have a big back yard, or neighbors who'll put up with a few campings in theirs untill all backyards in the block are full! Woodstock all over again!:)
Yeah, except this time you can guarantee no one's getting naked. :DQuote:
Originally Posted by Doug
Speak for yourself! Ha! (Not if we're going to YouTube it.):pQuote:
Originally Posted by Sangye
ah what a whale of a time we all would have. nakid whales that is:o:eek:
I like your choice of smileys there, Jolanta. The first is how we'd each feel, the second is how the others would feel about seeing us!
I look like a top or a turnip upside down, actually, though I'm at least as big as a new:)born whale.
I'm the Peanut M&M!!
My husband just looked at your reply Sangye and confirmed I look like and M&M peanut too.
Hi mn, so happy that u two will have time to compare things. I guess i should ask if there is anyone around this mickey mouse town with wg, we just moved to st. Cloud from kissimmee and i work at disney. My hubby has had a very bad day, says it is like when he got out of the hospital 3 weeks ago, where he was dx . Short of breath and very tired, slept a lot today. "no fever thank god " i say if he get another fever i'm taking him to mayo in jacksonville, fl er, and hope they will see him. Our family doc is supposed to get us all his test,labs any results from his 2 weeks in the hosp. His bp goes all over the place and we try to adjust his meds to whatever it is in the morn. Has anyone had this prob.? He sees the infectious disease doc(why her i don't know this isn't infect.) dec. 1 but that who is saw him and ordered test in hosp. Who would be the best to see?? Also the nurse practioner of his lung doc next week. Is there any research in wg? I pray that you all have a good week. Disneylady
Please don't wait for him to get a fever--get him in to Mayo as soon as possible. Short of breath and very tired are not good signs. Wegs is not an infection, so you can't wait for a fever.
Neither a family doc, nor an infectious disease specialist (why on earth????), nor a nurse practitioner is in any way qualified to provide the specialized care he needs on an ongoing basis.
The doctors he should have :
1) A rheumatologist who specializes in Wegs as his main doctor overseeing his care.
2) A family doc to put out fires and communicate with the Wegs rheumy as needed.
3) A lung doc (pulmonologist) if the rheumy thinks he needs one. NOT a nurse practitioner. A doc who knows Wegs well.
4) If he has kidney involvement, a nephrologist who specializes in Wegs
5) Any other doctor his rheumy wants him to see.
The bp problem must be dealt with. It's not okay for it to be jumping around like that. Very hard on the heart, blood vessels and kidneys. His family doc might be the best one to address it quickly.
If it were me, I'd make 2 calls tomorrow : one to his family doc to be seen tomorrow, and the other to Mayo for the soonest appointment with a Wegs rheumy.
Jola, I live in Nanaimo and this summer I went to a WG get together in Vancouver, there were 4 of us there and a couple whose son had it. It was really great. If you would like I can send you the group info, they said they have a number of contacts in the area. You won't be alone for long, unless you choose. For myself I am in the Vasculitis booklet representing Vancouver Island. If you come this way, I would enjoy a visit. I'm hospitable. (That goes for others too who may be visiting in the area)
FOUR! This is weggie heaven!:):):):)
Hi, Anyone around St. Cloud,FL?? I'd like to know who you have for Doctors and are they specialist in WG ? I had a very good rhumy but she don't take our insurance any more. She is Dr. Freeman in Orlando, but I don't know if she is a specialist in WG. Has anyone in FL gone to Mayo? and who do you see there?
thanks, i hope we can find someone closer as that is about 2-3 hour drive each way, but i still would like to get him startd there AT MAYO. THANKS SO MUCH FOR THE INFO
I'm new to this. I live in the UP. I visited your fine Mayo Clinic 3 yrs ago to get the dx. I believe it was Dr. Utz that I saw. I've been back and forth with meds and remission--liver problems etc--only stayed away one year--more meds--hoping it stays away long enough for me to get pregnant again.
See you on the boards--if I can do this correctly:)
Jaime
Hi Jamie, did you have your first child before wegs or during remision? Glad that you are positive and in good hands. See you:D
Hello friend in the up our son lives in the "up" near the airport, and our brother has a camp out the 55o. So where do you live? And do you still come to mayo in jacksonville ? Do you winter in fl?? If not hope you enjoy the winter, stay healthy, and safe
Hi hope i get a reply!1 did you go to mayo in jacksonville or mn? Dr said today that it would be a good thing for my hubby to go to mayo. I just have to convince him.
Hi DisneyLady,
Since you live in Florida, it makes more sense for you to go to Jacksonville Mayo. If your husband needs convincing that you require a Wegener's specialist, please read this post to him :http://www.wegeners-granulomatosis.c...ity-check.html
I live in Rochester Mn so that is where I go to Mayo, but I also am a Mayo employee and can assure you that whether it be Mayo Jacksonville, Scottsdale or Rochester, you will get the best of care!
Well. I had symptoms around 18 but was miss diagnosed and just went on believing I had pneumonia all the time. I got pregnant when I was 23 while I was still coughing up blood. It was only a little....like the scab from my lung. During pregnancy my OB said it must be a gastric ulcer and put me on Nexium...there was nothing else he could do at that point.
I delivered a healthy baby, nursed her, and went to the MD when I was in horrific pain when she was 3 months old. Then it was a local MD that sent me to Mayo and the rest is months of in and out on meds off meds. She turned 1 right before my lobectomy (the Wegs was so bad).
I was in remission for a year then it came back. The meds actually worked this time, but I went off them to get pregnant again....i have to wait 6 months to be "washed out" from the methotrexate.
thanks, Jaime
Jamie, I have great admiration and prayers for you. You certainly are someone that don't let the worries of this world get her down. I pray that you may have a healthy easy pregnancy and a healthy baby.
We are in the process of getting my 72 year old husband to Mayo in Jacksonville,FL. He has been seeing a Infection disease doc. and had a visit this morn. His blood work from 3 weeks ago had his white blood cells down to 2.7(low) and his SED rate 122 up. His ANCA is OK. So I'm getting all his reports and making appts . Hoping your Wegeners will stay away for a long time. Marion
Wow, those numbers are very bad. The WBC count is extremely low. He has a very high risk of getting an infection. Please keep him away from any possible sources-- public places, children, etc....Quote:
Originally Posted by DISNEYLADY
A SED rate of 122 is extremely high.
Ignore the ANCA-- it's not a useful measure of Wegs activity once diagnosis is made.
How fast can you get him into Mayo? Please tell them his WBC counts and SED rate when you call, and let them know those results are already 3 wks old.
This is very serious, especially given your husband's age. Please do whatever it takes to get him in asap.
Thanks for the reply!!! I finally found the doctor's name and phone number you sent me a few weeks ago. He now wants to get new blood test to see if the results have changed for the better. He had a very good day today. Worked in his shed building things for one of his projects. I will call dr. Lee tomorrow.