Waiting on confirmation of disease, very scared, confused.

[Shannon's faith]

Hello, I am a female age 37, with three children ages 11,10,5. I have been sick off and on for ten years with visits in and out of the hospital with bloodwork off on labs every time but nothing that ever confirmed an illness although I was clearly ill every time. Recently I have been very exhausted, headaches, moody very swollen in my abdomen and hands, and many more things etc. Went to doc and found out that I have blood and protein in my urine. I have had plus 3 to plus 4 blood for more than ten years but not protein. Now I have been sent to a nephrologist who has done much more blood work and has given me a diagnosis of Wegener's and will do a biopsy on the 23rd of March to confirm. From my research, this disease describes me to a T. My kidney functions are suppressed as well. Does anyone know of how advanced my stage of this disease could be due to the fact that I have been sick for so long undiagnosed and my kidneys are the first thing that has given the doc an almost definate of Wegener's? Thanks

[JanW]

Hello Shannon's faith, and welcome. Glad you are here but sorry you had to find us.

First thing -- it would be helpful for us to know where you are located. This is because, if you don't have a doc who is a WG specialist you need to find one, and we can help you locate one that is close (relatively) to you.

I can't say how advanced your disease is, but I do know that your disease can likely be managed medically. As for me, I have nasal (saddle nose) and throat (subglottic/tracheal stenosis) involvement, no kidney, that I have probably had for several years. I have just had surgery for more throat and will be starting meds soon. People here will definitely tell you that if you need to be treated medically it should start quickly. Often doctors confirm without a biopsy (although with kidney involvement they may be able to get a good sample for a biopsy) and begin treatment based on blood work and severity of clinic presentation.

[Sangye]

Hi Shannon, welcome to the group. I'm glad to hear you're finally getting proper attention for your symptoms. Ten years is a LONG time to go with Wegs without treatment. If you do have it, you can consider yourself unbelievably fortunate to still be alive. Especially since you've had kidney involvement for so long. That tends to progress very rapidly.

Everything about Wegs is unpredictable and highly variable-- the progression, what treatments you respond to and how you respond to them, recovery times, etc.... It can be very frustrating. There's absolutely no way to tell how advanced the Wegs is for you at this point without appropriate testing. Some people might have simmering Wegs for many years and still not have much damage, while others have a sudden onset of life-threatening disease. It's all over the map with Wegs.

Where are you located (generally)? Which docs are evaluating you? It's crucial to get a Wegs specialist. We can help you find one.

[Sangye]

Also... Wegs is scary and confusing no matter how it presents. This group will keep your head above water and help you through all aspects of it. You can ask anything, vent, express your fears, etc... and someone will always be there to help.

[Shannon's faith]

I am located in western Kentucky. Let me know of a specialist nearby or even in Austin TX , I visit there every year for 2 weeks, thanks.

[Shannon's faith]

Thank you, for being so kind, I dont feel so all alone as I did 2 hours ago.

[Sangye]

LOL-- 2 hours from now you'll feel even better. We're a talkative bunch.

Since you're in Kentucky, the closest major vasculitis center is Cleveland Clinic. The other major centers in the US are Johns Hopkins in Baltimore, Mayo Clinic in either Minnesota or Florida (Mayo Arizona doesn't specialize in Wegs) and Boston University.

The main type of doc who will oversee your care as a Weggie is a rheumatologist. However, due to the rarity and complexity of Wegs, you need a rheumy who specializes in Wegs. Someone who's treated a few cases is not sufficient. The Wegs docs at the major vasculitis centers see hundreds of Wegs patients. It's hard to describe how important it is to have one of them overseeing your care.

I'm very concerned that the kidney biopsy isn't for another 2 weeks. When they suspect Wegs in the kidneys they typically do the biopsy right away. Are you on any meds yet?

[elephant]

Hi Shannon, I go to the Cleveland Clinic in Ohio and See Dr Carol Langford who is a Wegeners specialist and she is wonderful. I live in South Carolina. I drive 10hrs to see her. I have a kidney transplant as a result of Wegeners disease and amongst other stuff wrong with me. I had it for over 30 years. Need to get your kidneys checked sooner. Did you see a Nephrologist ( kidney doctor)?