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Thread: Mom recently diagnosed with Wegener's

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    Default Mom recently diagnosed with Wegener's

    My mom is 66, has never been on any medications, hasn't been in the hospital for over 40 years, and now can't seem to get out. The last two weeks of May, she wasn't feeling well at all. Went to the local hometown doctor, and he said she had bronchitis and gave her some antibiotics. She wasn't getting any better. Running a fever day after day, and all she wanted to do was sleep. She was having a difficult time breathing, and had lost her strength. On June 1, 2010, my dad took her to the ER in Columbia, MO. The ER docs told us she had pneumonia in both lungs, and x-rays show four different spots in her lungs. They scheduled a CT Scan. Day 2-Drs schedule a bronchosocpy for biopsy of spots on lungs. They are convinced that it is cancer. Still running a fever. Day 4-Results from biopsy, no cancer. Heart rate is excessive. Day 5-Moved her to ICU due to heart rate. Dr scheduled another biopsy. Her breathing was wearing her body out, so they sedated and intubated her. Another biopsy was done. Day 6-inserted a feeding tube, and started some type of steroid. Day 7-Drs say her kidneys are not functioning properly and needed dialysis. We were informed that the last biopsy resulted in dead tissue. Day 8-still sedated and still on respirator. Did dialysis again. Drs insisted on open lung surgery to get better tissue samples. Came out of surgery with chest tube. Day 9-Nurses stopped sedation at 8 a.m., and she was taken off the respirator by 11 a.m. Did dialysis again. Day 10-took out feeding tube, and put in Picc line. Day 11-Moved out of ICU. Breathing is good, heart rate is good, but blood pressure is bad. Drs say lungs are clearing up. They tell us they have never seen anything like this before, and as far as they can tell, there is no cancer, but was a bad infection from pneumonia. Day 12-starting to eat a little. Broke out into a rash. Day 13-Did surgery again to check heart valve to see why blood pressure is so high. Still has rash. Day 14-Did dialysis again, kidneys are no better. Day 15-Did dialysis. Day 17-Did kidney biopsy today and Drs said they were going to send to Mayo's to hopefully get a diagnosis. Day 18-Drs are leaning toward Wegener's. Day 19-Dialysis again, and still has rash. Day 20-Rash starting to go away. Day 21-moved dialysis catheter from leg to chest. Day 22- Drs confirmed that she has Wegener's Granulomatosis. Day 23-Removed catheter, did two walks with PT. Day 25-Drs discussed treatment with Cytoxan and Prednisone. Day 26-Started Prednisone in a.m., and started Cytoxan in p.m. Day 28-Dialysis again today. Day 31 (July 1). Drs. released from hospital to go to a closer hospital that has a rehabiliation unit. Day 38, Doing dialysis three times a week, still has chest tube. Working with PT everyday to try to gain her strength back.
    She is very homesick, and gets very emotional. As soon as she is able to climb a few stairs on her own, she will be able to come home. My dad is completely wore out. He's still trying to work, driving 45 minutes to take her to dialysis, and back and forth 2x a day. They are about an 1 1/2 hours from where I live, so I'm not going to see her everyday like I was in the beginning.
    So anyway, that's our story. I have read so many of your stories, and every little bit of information about this disease helps me to understand it more. Thank you!

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    Cindy
    Sorry you had to find us this way....but this is the most informative and supportive forum...who is your Mom seeing for her WG?...Makw sure they specialize in it...Dr Abdou in Kansas city is the only one I found recommended by the vasculitis foundation...will keep your family in our prayers

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    Cindy, I only found this sight a few weeks ago and have been trying to gain strength from all the wegs people who are affected. It is my husband, who through a similar story as yours was diagnosed 25 years ago. He had the kidney biopsy to finally determine it first time. Since then has had 2 other flares involving both resp and kidney. Right now he is really sick with a fungal infection in lungs. I think you spoke to me on another topic forum. I can only reiterate the importance of finding a wegs specialist for your mom. My husband is 65. God be with you and your family...we are all connected through this terrible disease.

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    Hi Cindy, the most important wisdom that this forum offers is - Get a wegs specialist - do not go for second best but only get the best
    Jolanta

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    Thanks Cindy for sharing and so glad you went to this forum. We are here for you and your family. Make sure she gets to a Wegeners specialist soon, they will cordinate her care.

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    Sorry you had to find us -- we are here for you. I can only second what everyone else says; get a specialist or at the very least a doctor who will consult with a specialist. There have been tragic consequences when this advice isn't/can't be followed, I'm sorry to say. Please got to Front Page | Vasculitis Foundation to learn more about the disease.

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    Thank you all for suggesting a specialist. Where do we find one? I know one of you mentioned a Dr in Kansas City. That's about three hours from here, and I'm not sure she is stable enough for that long of a ride. There were so many Drs in and out at the hospital, it was unbelievable. The dialysis three times a week completely drains her. She is determined to get home though, so today she was on a roll with the Physical Therapists.

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    the vasculitis site noted above tells u where the specialist are. I live about 50 miles east of Kansas City and Dr Abdou is the closest ....mayo in mn is the next closest...they also may consult with your Doc...it's an option....let me know if u neef the number....have a good night...tell ur mom we r praying for yall

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    Hi Cindy, My heart goes out to your family and your Mum. Cant offer you advice on specialists or doctors cause Im to far away. When all this is over just be there to listen and understand. I will keep you all in my prayers. God Bless jenny

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    Quote Originally Posted by Cindy R View Post
    Thank you all for suggesting a specialist. Where do we find one? I know one of you mentioned a Dr in Kansas City. That's about three hours from here, and I'm not sure she is stable enough for that long of a ride. There were so many Drs in and out at the hospital, it was unbelievable. The dialysis three times a week completely drains her. She is determined to get home though, so today she was on a roll with the Physical Therapists.
    If your mom is on medicare which seems likely from her age another problem you may encounter is finding a physician that will accept new patients, especially those on medicare. There are many articles in news about various medical facilities and physicians that will not accept medicare patients because of low payment schedules by Medicare. I agree it is important to try find someone who is familiar and experienced in treating WG. I have many problems now that resulted from failure to get treatment soon enough because several physicians could not recognize the disease. Even when they know the diagnosis many physicians, based upon my experience, don't recognize what the symptoms mean or what treatment is needed and fail to use resources of consultation even when available. The best resources generally seem to be large University teaching hospitals and a few of the "prestige" medical centers if you can get into one and have resources to pay for their services.

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