some more questions

[Sangye]

I don't worry about getting kidney involvement at all. It is NOT inevitable. Dr Seo told me the longer you go without kidney involvement the less likely it is to ever develop it. When he told me that it had only been 4 yrs since dx, but he said he'd be very surprised if my kidneys ever got involved. I have lung-only involvement and didn't get into remission for 4 years. The Wegs dog seems to like hanging out with me.

As far as the term Weggie, I don't mind it. I don't go around calling myself a Weggie or use it outside this group because no one would know what I'm talking about. But to me it's very lighthearted and takes the sting out of it for me. I also like referring to the"Wegs dog" instead of having a disease. It's important to take Wegs seriously but also to find a way to keep a sense of humor about it.

Even just saying Wegs instead of Wegener's helps me. I can sleep at night having Wegs. I don't think I could sleep having Wegener's granulomatosis!

[Daggar]

Having WG doesn't mean you'll eventually have kidney involvement much like some people won't ever experience lung involvement. Everyone's immune system works differently and even those of us without WG will eventually have some form of lower kidney function as we age. The key is to watch for the symptoms and "have blood and urine tests regularly which all of you do." As Holly's Nephrologist said...."whether you are a Wegener's patient or not, you need to catch any form of kidney disorder quickly to avoid permanent damage." The problem for those of us who do not have WG, or have seen what it can do, is the avoidance of getting "regular" lab work and in some cases the damage will be done. What was that old saying.... health care begins when you're diagnosed with a chronic illness??

If you do have kidney involvement the treatment is the same but maybe more aggressive to avoid damage.

[Jack]

As already said, the longer you go without kidney involvement, the less likely you are to ever develop it. It is far from being an inevitability. Also, should it ever develop, it will be detected during your regular checks and there is now a great deal that can be done to prevent it from progressing. Very few Wegener's patients develop kidney damage during treatment and go on to loose all function.

I was unfortunate enough to be diagnosed after my kidney damage had progressed past the point of no return, but even then there was plenty of life left. I was on dialysis for a while and then had a transplant. Since then, my new kidney has not been problem for me. Thanks donor and family!

As far as labels go, I've never really considered the subject. I don't care too much how people might label me because it changes nothing.

[delorisdoe]

Nobody labels me. ..id be suprised if even 5 people could name what it is I have. I just don't like to refer to myself as a weggie. Maybe I should practice, beome comfortable with it.

So jack, I am going to ask you do you think that not progressng to wg kidney involvement is in part to treatment? Ask because I am only treated with septra. Wait and see is great because it avoids side effects but it cleary is not helping my menta health. I also have asthma, and am alpha1 anti trypsin defficient so I never know which symptoms to pay attentio.

[Daggar]

YES! Thanks to those who donate! It is a real eye opener when we visit the Nephrology clinic and see kids on dialysis waiting for kidney donors. I was ready to drop one when Holly was first diagnosed but was quickly told we were "far from that"....

Jack -- how did your treatment change after transplant?

[drz]

[QUOTE=Hammy8241;36456]Q1. Not concerned with anything I can't control, rather concentrate on what i can achieve. Not 'head in sand' but damn if I 'm going to worry about what might happen.


I like this quote. I figure Wegener's disease has taken enough from me so I am not going to give it any more than I have to by worrying about what might happen. What ever happens, happens and then I will have to deal with it? One thing I have learned from surviving Wegener's so far is that I can deal with all sorts of things if I have to face them, although I hope to avoid many of the unpleasant aspects. One time is often enough too when learning to cope with something very unpleasant.

[aewaustin]

+1 On liking that quote! I love it!

[LisaMarie]

I like the Weggie term..I have a bumper sticke on my car that Marta designed and have several youth as well as myself wearing pred head hoodies and my says Weggie on board...It gives me an oppoturnity to educate...now if we can get some to qualify for Extreme Home Make Over to put a light on WG...I think it would help with the family and promote awareness of WG. I am in need of revamp of my home with this diagnosis but I am sure there are others in more financial need than me...so if you all know anyone ...let's get them nominated.

[Terri]

Not sure where to put this but since there is talk about the kidneys here I will ask.
On my last lab work I just got back........my urinalysis report says I have many (>15/HBF) H calcium oxalate crystals what does that mean?
I'll be calling my Dr. tomorrow but wanted to find out before talking to him.

[maria garcia]

I was diagnosed 10 years ago. I supose me hating the term weggie makes sense for my personality. I just thought maybe I was not the only one. I suppose I may need Help with my mental issues. Lol

Ten years! Im sorry im new at this. How has your path been?