Labs Monitoring

[pberggren1]

I have always wanted to know what a fortnight is.

2 weeks..........

[drz]

how often my kidney function should be monitored and he says as long as I am stable 6 monthly should be fine.
??

Our dear departed friend Jack always reminded people how he lost his kidneys from Wegs at a rather young age and needed a transplant. He said his happened very quickly, which is why whenever anyone presented symptoms of a flare, he advised quick checkups and close monitoring to try avoid loss of kidneys.

Jack your wisdom is still appreciated. we miss you!

[Rose]

Thanks to everyone for their input. I see my rheumy next week and I will insist on monthly monitoring. I would just like to say that if I am aware of a problem i could contact my Rheumy at any time and blood work would be ordered. The concern is the damage that might be happening without being aware of it especially a silent kidney flare.

[watersedge]

Good luck with your appointment next week Rose, I agree with everyone about how quickly and silently the kidneys become involved. It is your health that is important, these doctors forget you as soon as you leave the room, shout loud enough so they don't forget you!

[Sangye]

Jack lost his kidneys over the course of just 2 weeks.

Rose, your doctors are right about doctors here being afraid of lawsuits, but there is still common sense involved. Dr Seo checks my labs every month, including urine and I have no kidney involvement. Less frequent doesn't make sense.

[Dryhill]

For most people, it is not necessary to check ANCA titers regularly, at least past the initial diagnosis. However, it is a useful test to monitor how well CTX or RTX is doing its job. Also, for a few people, ANCA corresponds quite directly to disease activity.

Yes Al, checking ANCA levels is a useful monitoring tool. It was a check on my ANCA that showed I needed to come off CTX and go onto RTX (the CTX had done some good but not enough to put me into remission).

Jim

[Debbie C]

Well i just came back from having the ultrasound done on my kidneys ( i didn't see anything "shiny" ) and she wouldn't tell me if she saw anything or not excepts for cysts. So I'll just have to wait for the report. I go see my reg dr. on Tues. and he'll have the results. I also called the kidney group to get a dr. there and inquired if any of them knew anything about wg. if not I would go elsewhere. Well they said they do but they need a referral from my dr. and right now he is wondering why I need to see a kidney dr.so he won't refer me until I see him on Tues....if he does at all.I also made an appt to go to the Cleveland Clinic on the 23rd of April to see Dr. Hoffman ..he is the head of reumys and vasculitisis there ( I've seen him twice already..he's the one that thinks I have to much anxiety) go fiqure I can't get these drs. to get there crap together and put me on something other than prednisone. I have some ctx and bactrim left over from before pretty soon I am gonna just start self medicated myself !!

[Dryhill]

2 weeks..........

Well strictly speaking Phil, fortnight means fourteen nights coming from the Old English expression feowertyne niht. But that is all history, after all this new device the horseless buggy has us all excited and wondering if it might become popular.

Jim

[pberggren1]

Well strictly speaking Phil, fortnight means fourteen nights coming from the Old English expression feowertyne niht. But that is all history, after all this new device the horseless buggy has us all excited and wondering if it might become popular.

Jim

Oh Jimmy, you do keep us in stitches.........

[Al]

Well i just came back from having the ultrasound done on my kidneys ( i didn't see anything "shiny" ) and she wouldn't tell me if she saw anything or not excepts for cysts. So I'll just have to wait for the report. I go see my reg dr. on Tues. and he'll have the results. I also called the kidney group to get a dr. there and inquired if any of them knew anything about wg. if not I would go elsewhere. Well they said they do but they need a referral from my dr. and right now he is wondering why I need to see a kidney dr.so he won't refer me until I see him on Tues....if he does at all.I also made an appt to go to the Cleveland Clinic on the 23rd of April to see Dr. Hoffman ..he is the head of reumys and vasculitisis there ( I've seen him twice already..he's the one that thinks I have to much anxiety) go fiqure I can't get these drs. to get there crap together and put me on something other than prednisone. I have some ctx and bactrim left over from before pretty soon I am gonna just start self medicated myself !!

Don't do the self-medicating, Debra, but do give the rheumy a hard time. All you have to do is tell him that all Weggies are potential nephrology customers, so it is best to get to know the purveyor before the time comes. They presence of cysts is, by itself, a solid reason for having an arrangement with the nephro.

Dr. Hoffman is one of the venerable ones, but, I have been told, can come off as somewhat or a curmudgeon. (I've never met him, myself.) Of course, he may be right about your anxiety. But I contend that anxiety is completely understandable, and pretty much inevitable, for a Weggie. He should be able to deal with it.

The ultasound techie apparently considers the doctor do be her client--not you, even though you are paying her wages. Let us know what they end up telling you!

Al