Mom recently diagnosed with Wegener's

[JanW]

If you go to the link I posted above, Cindy, there are a list of specialists on the Vasculitis Foundation's website.

[Sangye]

Cindy, welcome. Just a quick note to urge you to get your mom to a Wegs specialist on the VF list asap. The number of doctors on her case may give the impression that all bases are being covered, but please trust us-- they don't have the skills and experience to know how to treat it. Best of luck.

[Carly Hedge]

Oh my.. So sorry that your mom had to go through all that. Then you guys with all the emotional stress. I hope that she gets better-one day at a time. Will be keeping you guys in my thoughts.

[Cindy R]

Quick update. Mom came home 7/14/10. 44 days in the hospital. Doing pretty good, complains of joints in her knees hurting. Has a hard time getting up, but once she's up, walks really good with a walker. The kitchen table looks like a drug store now with 10 different meds. Still has chest tube. Goes back to Dr. Tues, and has second round of cytoxin. Still doing dialysis 3x a week. We are getting an appointment set up with Dr. Abdou in KC. Thank you for everyone's advise to get her to a specialist.
Cindy

[Sangye]

Thanks for keeping us updated, Cindy. I hear chest tubes are extremely painful. I hope she's able to manage with all that pain and the weakness from such a long stay.

The knee pain is common with active Wegs and should diminish as the treatment kicks in. The only good thing about having joint pain like that is it's a great way to track response to treatment as well as being an indicator for future flares. Mine never went away on initial pred/ctx but my docs didn't believe it indicated active disease. Wrong!

[Doug]

I had a stent (Grashong line) for 16 months without any major issues.

It saved a lot of wear and tear on the arms and hands as they could take blood samples this easy way, as well as administer drugs and transfusions (in the early days). It did require vigilance, for signs of infection, reasonably enough, because it did go directly into my aortic arch.

I don't know if this is the same sort of stent Cindy R.'s Mom has or not, but the only pain I recall came from sensitivity to the tape used to hold it secure. In time, the nurses came up with a tape that did the trick and caused no irritation.

[Jack]

I think that the stent in question here is a mesh tube inserted into an artery in order to keep it open and improve the blood flow.

[Doug]

Ok. Now I'm on the right page.

[Cindy R]

Is the stent you are referring to also called a picc line? She does have a picc line on the inside of her arm, but she also still has the chest tube. This was from the lung surgery she had for the biopsy, on June 8, so it has been there for 6 weeks. We are hoping they remove tomorrow at her appointment, as it is very irritating.
Other good news....dr's told her Friday that her kidneys may not be as damaged as they originally thought. They are now saying they were more inflamed then damaged. Doing more tests to make sure, but if all goes well, she may be off of dialysis in a month.
Cindy R.

[Hammy8241]

They are now saying they were more inflamed then damaged. Doing more tests to make sure, but if all goes well, she may be off of dialysis in a month.
Cindy R.

Fingers crossed for you both Cindy.