some more questions

[delorisdoe]

1. For those of you without kidney involvment...do you feel as though it is just a matter of time. I don't know if I worded that correctly but I always feel as though some time soon my kidneys are going to be affected. It nags at me. My doctor said I had a very difficult case to put into remmision and it was all in my lungs so I hOpe not.

2.this comes from an earlier post where someone said they don't like to say"my wegners". Neither do. More importantly I cringe at the term weggies. Am I the only one? I mean truly hate that word and what it implies. I am many things, a wife, a mother, sister, daughter, employee, boss and even a cranky you know what. Call me any of the above but please do not call me a weggie:thumbsup:

Leigh

[Psyborg]

I do worry it will happen eventually. That said if you are maintaining under treatment it should not ever occur(as I understand it)

Weggies does not really bug me. I don't think labels need to define us.

[marta]

I had very minimal kidney involvement (almost insignificant compared to the other stuff going on at diagnosis) and I very rarely think about my kidneys. If I haven't had enough fluids and my urine comes out concentrated I just remember that I need to take care of them and hydrate but other than that I don't think about it because as Bob said, if you're getting proper treatment it shouldn't go there.

As for the term Weggies, this is an example of how we're all different (both in disease manifestation, treatment response and how our brains work). When I heard the term Weggie, I fully embraced it because I really dislike the term "Wegener's Granulomatosis Patient" - hate it, and aside from being a mother, a wife, a sister, a daughter a hard worker, a loving friend, I am unfortunately also a Wegener's patient. Somehow the term Weggie makes it feel more beatable, easier to take on and overcome... which I fully intend on doing and living a realtively normal life. Being a wegener's patient on the other hand sounds like a much harder job to do along with all the other titles/jobs I have in my wonderful life. So in my case you can call me all of the above including a Weggie.

[Chris G]

I dont' "currently" have kidney involvement. That's what I find myself saying. Because I don't know whether I will or not. Is it inevitable? I don't know. Leigh - I think you were recently diagnosed too......is that correct? What meds are you on? and what are your main symptoms? I'm currently taking 25mg mtx and 17.5 pred, plus the usual suppliments. This treatment is designed to induce remission, base on the fact that I dont have kidney involvement. HOWEVER, it's not working, and they're telling me to increase to 30mg, in an effort to avoid the heavy hitters, I guess. I'm getting frustrated, discouraged, and a little scared. And yes, I'm considering asking for an appt at the Cleveland Clinic (more on that later - because I have questions from the "elders" on this site about that).

Hearing the word "weggie" doesn't bother me, but I wouldn't call my self a weggie (at least I haven't yet). The term I do use when talking about it is "THE disease".

[Chris G]

Marta- you seem to have a great outlook:smile1:, and it seems like you've been through a lot. I hope I can get there too.

[delorisdoe]

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

[Hammy8241]

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.

Q2. Can't pronounce it, can't spell it, so just use WG. In all honesty, I could not care less what its called... it just stinks!

[pberggren1]

I had very little kidney involvement in the begining and basically none since. I don't worry about future involvement. I do know that if Wegs presents with lung or sinus stuff without kidney involvement it is usually harder to treat and get into remission.

[NicShaf]

I don't worry about future kidney involvement. I just focus on getting Wegs into remission with the symptoms I have now. Because I'm currently in the middle of treatment and I have labs done weekly, so the thought of Wegs going to my kidney’s just doesn't cross my mind too often.

I like the term Weggie. I agree with Marta, it makes it sound less insurmountable than "Wegener's Patient". It almost gives Wegs a light hearted side, and for me it makes it easier to deal with. I don't like using words like "disease" or "chronic illness". To me, these sound so serious...and I realize that WG is serious, but I would rather have a cute little name for my "thing" to make it sound less scary than it is. But I understand where you're coming from, everyone is different.

[aewaustin]

I had my first go round with Weg's in 1992, and dealt with it through to 1994 and then was blessed with years of remission. I am very proud to have dealt with such a serious disease and it is something that had definitely changed my life in a positive way so none of the terms bother me. I am very proud of the fact that I went through Wegeners's/chemo during my last two years of college and kept it together. So I identify with Wegners or whatever, and it is part of me that makes me special and one really tough cookie :) But I never would say I am a Wegeners patient, I just am someone that had this weird disease, it is not me though, if that makes sense...

Sucks it is back flaring now, but I think that there will be a time that I can look back on this time and will be proud to have kicked it's ass again.

So blessed to have this forum... Thanks guys :)

Anna

[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. :rolleyes1:

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! :laugh:

[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 :ohmy: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?

[maria garcia]

How long were you on remission? How is it flaring ? Im new at this only a week. Any informationwould help.

[delorisdoe]

I was on cytoxan for 2.5 years and prednisone. About 3 months before I was done this treatment my wbc was extremely low so I had 6 ivig treatments and from that point foward improved quickly. Over the years I have had mild flares, none of wich have needed more than prednisone to send back into chemical free remssion. I have for the last 6 months or so been a more stuborn flare that seems to be fighting me harder then I have been used to the last few years