Recapitualtion

[Al]

I feel so stupid when I talk to you guys..you all seem to know so much about this disease and what to ask and what to expect. I just came back from by dr. and he gave me a copy of my labs and my current ultra sound of my kidneys. The labs were all fine EXCEPT it did show a trace of ketones,trace of blood and trace of protein in my urine. I had ct ct scan done on my liver and kidneys and they noticed cysts and multiple lesions which they suspect are benign but suggest another follow-up ct.They don't know I have WG so I'm hoping it hasn't spread. My reg dr. did not seem to concerned but he is sending over a referral to a kidney dr. Question-----if it were in my kidneys wouldn't my WBC & RBC be off?

Debra, one of the trickier things in dealing with the medicos is the huge knowledge gap. Among Weggies, though...not so much. Anyway, once you realize that a lot of the gap has to do with vocabulary, all you have to do is learn how to use the jargon, and you are in.

First, let me get this straight: Who, exactlt, does not know about the WG? Why not? And do they know now?

I'm glad you got your referral. Be sure the nephrologist knows about the WG! Current kidney function is determined mostly from two blood tests: creatinine and BUN. Protein and blood can be caused by several things (some of them rather benign), the worst of which for Weggies is NCGN (necrotizing crescentic glomerulonephritis), which is usually determined through a biopsy. This is quite serious, and is the reason that any hemoturia needs to be checked out. (NCGN plus ANCA is generally sufficient for a diagnosis--either GPA or MPA, depending on the ANCA type.) Kidneys rarely present with granulomas, even when respiratory areas are rife with them. WBC would not necessarily be off, though that count can suggest active infection, among other things, RBC might indicate, indirectly, highly distressed kidneys, but the more normal number to look at to determine anemia is HCT (hematocrit). Regardless of whether the WG has "spread" (I am hoping not!) you do have issues that should be considered by a good kidney doc who knows about WG.

Al

[Al]

....Also, congrats on designing your own house! My dad's wife pretty much did the same thing. (Of course, then you have to work with the builders unless you're going to build it yourself.) I think I'd trust an architect a bit more than most doctors to take the time for personalized attention and doing the job I needed done. You saved yourself some big money, there, though!

I only pounded a few nails, myself, Anne. Mostly, I let the pros do it. I did serve as general contractor, and I learned a huge amount along a steeper than I would have thought learning curve. But I did have the good sense to hire a really fine head carpenter, and I generally let him decide on the day-to-day solutions, though we did have a lively dialog about many specifics. Also, I mostly took his recommendations for the subcontractors.

Come to think of it, this is pretty much how I am dealing with my ongoing "personal renovation project"....

[Thakator]

"personal renovation project"....
Good one, Al; that's what we're up to alright. The new us - - might just as well try to make this new house that we're somewhat trapped in as comfortable and as efficient as possible even as the old Wegs wolf keeps on trying to blow it down. Ron

[Debbie C]

Thank you Al (that was also my fathers and is my brothers name..short for Albert !) But I went and looked at my blood and urine results for all the things you mentioned and I am within normal range for everything. So hopefully so far so good with my kidneys ,I know my lungs need help.But thank you so much for sharing your knowledge with me. I need to learn the jargon now !!!

[Al]

Thank you Al (that was also my fathers and is my brothers name..short for Albert !) But I went and looked at my blood and urine results for all the things you mentioned and I am within normal range for everything. So hopefully so far so good with my kidneys ,I know my lungs need help.But thank you so much for sharing your knowledge with me. I need to learn the jargon now !!!

Well, Debra, you mentioned "lesions". No lesions are normal. Please let us know what they tell you next.

Al

PS I am also an "Albert". When I was a kid, I suffered some. Since my father was also an Albert, and I had two Uncle Als, my mother tagged on my middle initial--G. You can imagine the juvenile ribbing: "Hey, Algie Swampscum!"

[Debbie C]

I'll let u know what the scans show..u can probably tell me more than the docs.....I should just send u a copy of them HA! HA!

yea I bet u did get some ribbing with algie. I was always the shortest one in the class and my mother gave me a perm with natural cutlr hair...I looked like Shirley Temple for a long time.
Well I gotta go check in with the birds !!!!

[annekat]

PS I am also an "Albert". When I was a kid, I suffered some. Since my father was also an Albert, and I had two Uncle Als, my mother tagged on my middle initial--G. You can imagine the juvenile ribbing: "Hey, Algie Swampscum!"

Al, aren't kids delightful sometimes! I was called Witchy because I had dark hair, a longish nose, and a pointed chin. Some of that ribbing has lasting damage. In your case, I imagine you were able to rise above it and probably came up with some pretty good names for your tormentors.

[annekat]

yea I bet u did get some ribbing with algie. I was always the shortest one in the class and my mother gave me a perm with natural cutlr hair...I looked like Shirley Temple for a long time.
Well I gotta go check in with the birds !!!!

Debra, I was the shortest, too! Always last to be picked for teams in PE. You must have been adorable with Shirley Temple hair. Yes, the birds are calling!

[Al]

Well, gang, I do not have a personal "update" thread, so maybe this will do for now.

My postings may be a bit sparse for a spell. As you may know, or will surely find out at some point, prednisone has more side effects than you might realize. Case in immediate point: It speeds up cataracts by 10 years or more. Now, I am on a much lower dosage these days. Nevertheless, the eyes are definitely messed up, which is quite boring. I am getting really tired of those shimmery, dancing letters that refuse to come into definitive focus, especially during low-light conditions. So: Tomorrow I have the surgery on the right eye. If all goes well, the left eye will follow in about 6 weeks. They say that there is a 499 out of 500 chance that all will go well. Unless I am the 500th, I will be back tomorrow night, though without a license to drive for another 24 hours. We'll see. Ever then, I will have to get used to the mis-matched eyes. I'll be around the rest of the week, though rather busy. In any event, the next week, I am scheduled to go to the bird camp, where I will be giving some sort of presentation. The day after I get home, my wife and I will take a few days off. In both cases, I will have little or no internet access (which would sort of defeat the purpose, I suppose). (You suppose you lucky folks can do without me...?)

Al

[mishb]

Well, gang, I do not have a personal "update" thread, so maybe this will do for now.

My postings may be a bit sparse for a spell. As you may know, or will surely find out at some point, prednisone has more side effects than you might realize. Case in immediate point: It speeds up cataracts by 10 years or more. Now, I am on a much lower dosage these days. Nevertheless, the eyes are definitely messed up, which is quite boring. I am getting really tired of those shimmery, dancing letters that refuse to come into definitive focus, especially during low-light conditions. So: Tomorrow I have the surgery on the right eye. If all goes well, the left eye will follow in about 6 weeks. They say that there is a 499 out of 500 chance that all will go well. Unless I am the 500th, I will be back tomorrow night, though without a license to drive for another 24 hours. We'll see. Ever then, I will have to get used to the mis-matched eyes. I'll be around the rest of the week, though rather busy. In any event, the next week, I am scheduled to go to the bird camp, where I will be giving some sort of presentation. The day after I get home, my wife and I will take a few days off. In both cases, I will have little or no internet access (which would sort of defeat the purpose, I suppose). (You suppose you lucky folks can do without me...?)

Al

It's going to be hard Al, but I'm sure we can manage it alone for a few days

Take care of yourself and I hope all goes well with the eyes........I'm sure you will be number 499 (you can't be the special one all of the time).
Enjoy your days away and we look forward to the updates