This is our story of how this group started in 2012
Published February 16, 2012
PINE CITY PIONEER PRESS Written by Mike Gainor
Kami Schmidt and daughter Haley are forming a vasculitis support group in Minnesota. When that disease is rare, and no one around understands your condition, it's rougher still. A Pine City mother and daughter team are trying to ease the burden of those suffering fr
om vasculitis by forming a new, local support group - only the second of its kind in Minnesota. Vasculitis refers to a number of diseases that cause inflammation of the blood vessels. Pine City's Kami Schmidt suffers from Wegener's granulomatosis, a form of vasculitis that strikes one in 20,000 people. In Wegener's, certain types of antibodies in the blood go haywire, and begin forming nodules in veins, arteries and organs in the body. "They make little tumors, little clots," Schmidt said. "It attacks your blood vessels so there's not enough blood getting to your organs - lungs and kidneys are usually the ones with Wegener's. This can [also] fill up in any of your vessels and cause a heart attack." It took a long time for doctors to understand what Schmidt was suffering from. "I was diagnosed finally in December of 2009, and I know I had it for at least 10 years before that," she said. "I had been going to the doctor - I was so tired I couldn't move. Every October or November I was diagnosed with pneumonia, and now if you look back, it was probably the Wegener's - it wasn't pneumonia at all. "In 2009, when it finally all came together, I had leg pains really bad and then I couldn't feel my feet," Schmidt said. "I had chest pains and sinusitis where one moment you can breathe fine and the next you can't breathe out of your nose at all." She began to have chest pains, and was taken to the Wyoming hospital emergency room. "They did an EKG and a CAT scan of my lungs," said Schmidt. "They said, ‘You have heart problems and you have lung problems, and it's more than we can deal with so we want you to go to the University [of Minnesota Hospital].' So I ended up down in Minneapolis." At the U of M hospital they tested her and wanted to keep her in bed, but Schmidt begged to go home. Her daughter Haley - then a junior in high school - was home by herself. "I was home for a week, but then I started coughing up blood," Schmidt reported. Her boyfriend Greg rushed her back down to the hospital. "I was in pretty bad shape," she said. "I was already in kidney failure and bleeding so bad in my lungs." But Schmidt was still trying to find the funny side in the situation, even when the doctors came to her with the long-overdue diagnosis of Wegener's disease. "I deal with adversity with humor," she said. "The two young doctors who were talking to me at the time and showing me my lung CAT scan were telling me, ‘Kami, this isn't funny.' and I'm like ‘Yeah?'"
But what they had to tell her wasn't funny. Schmidt's disease can be treated, but not eliminated. The treatment combines chemotherapy and steriods, and over the long term, these medications can create cancerous tumors. "They tell you, well, you have this incurable disease and there's nothing you can do about it - if you don't die from that, you'll die from the treatment," she said. It was a frightening time for Schmidt and those who love her, but she pulled through after two weeks in intensive care. Returning home to Pine City, though, was a battle of its own. She returned to work, building up her strength until she could make it through an entire workday. She looked for a support group, but there was none around - though there was plenty of information on the internet. "The more you read on the internet the more scared you get, because it's ... honest that the prognosis isn't good," Schmidt said. But I just wanted to have some kind of contact, for people [with vasculitis] to have some place to go. Right now there's not a group in our area. There's a group in Rochester, and that's the only group in Minnesota." She contacted the Vasculitis Foundation and told them she wanted to start a group in Pine City. Her first meeting with the foundation was this past summer, and they approved it. "The international foundation told me that if I could get three people I'd be lucky, and I've already got six," she exclaimed. "I'm excited - I can't wait. What we want to do is provide information to patients about the disease and medications. And whatever they have questions about or I have questions about, we want to find a way to have those answered. And it's going to be really cool for me - and this is kind of a selfish reason - is that I get to meet other people like me." Schmidt laughed. "There's no one out there like me! It's true. You talk to people and they really don't understand what you're going through. I think all of us that have this ... kind of feel the same way [so] it's going to be great to meet people that also have it." She and her daughter Haley also plan to go to different clinics and hand out brochures. They also will try to talk with area physicians about vasculitis. "I think there's more people out there with it too that just haven't been diagnosed," she said. "A lot of the physicians, they heard about it in medical school, but you just don't see it in your practice in the rural areas, so you don't know about it." Schmidt had a flare-up of Wegener's in March 2011, but treated it with steroids and chemotherapy. "It's back in remission again, and I'm feeling so much better," she said. "Everything you read on these Wegener's sites says that you've got to get used to ‘the new you.' I don't want a new me at all." She laughed. "I'm starting to like the old me a little bit better than I did, I guess. That's what I'm fighting for. "Everybody's got to go one way or another, and I guess this is just my destiny," she said. "I know what's coming; I guess I have that advantage. I wanted to get Haley in college, and I survived, so I know she can take care of herself. But I want to see her finish college and then if she does go on to be a doctor or get married, I want to be there for all of it. "I've got to live life too," she said. "I'm not going to give up." Those interested in finding out more can visit www.vasculitisfoundation.org or contact Schmidt directly at [email protected] for information about the Pine City vasculitis group.
