Kidney problems

[jtausan]

Hello all,

I am wondering if anyone can give me info on the Kidneys. When I first got diagnosed with WG my ENT was very concerned about my Kidneys. I have always tested negative when I have had urine tests done. Well I have had some symptoms for a few weeks and they seemed to come to a head this week. I called my Urologist andhe did not have any appts until Feb. So I scheduled in Feb and was asked to be put on a call list. Yesterday I had back pain, fever, lethargic feeling etc, so I called and asked if they had any emerg appt times so I could get into see my Dr. They said no, that if I was having issues to see my regular GP Dr. I saw a GP Dr and he diagnosed me with Kidney infection and gave me antibiotics to take. I told him about the WG and explained that I was concerned that maybe my kidneys were starting to fail. (renal failure) etc. He said that he didn't think this was related to the WG at all. I was quite confused about that. I have not had a Kidney infection before I had WG. Is it possible to just get an infection of the Kidney's and it not be related to the WG? I have heard so much about Kidney failure in WG patients that Im a little gun shy about it I guess.
Any info would be appreciated. Thank You!:ohmy:

[JanW]

jtausan - do you have a WG specialist managing your care? If not, do you at least have a rheumy? An ENT should not be dealing with your WG on his own, and a GP cannot possibly quarterback care in this kind of complex autoimmune disease. Back pain, fever, lethargy, would all be something to tell your primary WG physician about, and mine would certainly have scheduled a same day/next day appointment with me. A nephrologist would deal with kidneys, but a good rheumy doing a urine sample and blood work would be able to quickly tell if something is going awry with your kidneys. How was your kidney infection diagnosed? Did you doc at least run blood work (creatinine) to check kidney function? Do you have that kind of testing on a regular basis?

Kidneys are a major worry with WG. It's true that if they get involved with the disease you go from a minor/moderate case to a severe case, just by definition. WG is what rheumys call an ELK disease -- that is Ear/Nose/Throat (E), Lungs and Kidneys are most often affected. Of all these, kidneys are the most likely to be damaged slightly.

My ENT always says, "Here's the thing about WG -- patients can be doing really well for years, and suddenly their kidneys will fail" although there is some speculation that then longer you go without kidney involvement the less likely you are to have any.

I urge you to get this problem checked out further. A WG patient has nothing to lose by suspecting that WG is at the root of their current health problems.

[lafounk2]

I agree. I would go to the ER and request urine test and definitely blood test to check creatinine. If anything this would give you a piece of mind knowing. Both those tests should be good markers on whether or not your kidneys are ok. Creatinine should be between 0.8 and 1.1. My son's was 2.6 when he went to ER when diagnosed with Wegener's. He also had protein and blood in his urine. I wouldn't wait especially with weekend coming. If Wegener's was detected in Josh earlier, perhaps he wouldn't be on dialysis as he is currently and wouldn't be needing a kidney transplant (scheduled for Dec 15).

[elephant]

I agree with lafounk2, need to really check it out. Kidneys are very important and being in failure is not fun!

[jtausan]

Thank you all for the info. Yes I do usually have lab work done about every 3 months. The only test I took at the Dr yesterday was a Urine test, no blood work was done. I do have a Rhuemy but she is in Houston, Tx. I'm in the process to changing to one here in town. Its frustrating because my town has 3 Rhuemy's and 3 Urologists and 3 Ent's. They are all booked out a ways and it's hard to get scheduled. That's why I went to Houston for care. (I have family in Texas that I stay with when I'm there) So between getting the run around here or traveling long distances for care I kinda get lost in the shuffle. I tend to trust the Dr's but I realize that they usually know nothing about WG and I'm having to explain to them. That is very frustrating with a disease that really has no boundries sometimes.

Again, Thank you for the info I have learned so much from these posts. I feel much better today than yesterday, the antibiotic is helping and I will talk to Rhuemy about Kidney involvment next week at my appt.
Take care all!:rolleyes1:

[Sangye]

If you're feeling better, it's probably just a kidney infection. If anything changes (ie you get worse or stop improving), get blood work and a repeat urinalysis done asap.

[Jack]

If you suspect any kidney involvement then act quickly. The symptoms of renal failure are quite subtle, but the consequences are life threatening and can affect you irreversibly within a couple of weeks. Simple urine and blood tests can quickly indicate if there is a problem and no doctor should hesitate in spending just a few minutes doing these.

[JanW]

I also wanted to add that I don't know whether your docs consider you to be in remission or not, but three months between blood tests is pretty long for a relatively newly diagnosed patient.

[Sangye]

I'm in remission and don't have kidney involvement, but Dr Seo still orders monthly blood tests and urine. I don't know at what point we'll go to 3 month intervals.

[Jack]

I've never gone past 3 months in all the years that I've had Wegener's even when I was doing very well.

[renidrag]

I am still monthly also, and would probably be nervous if I was told to go to three months. I was a little edgy at the thought of not seeing the Doctor at a four month interval.
Dale

[Minneapolismark]

Looks like this thread has whiskers on it, but I thought I would share this link. This is from a nursing blog and offers a brief list of symptoms that may indicate kindey problems.

Nursing Articles: RENAL FAILURE (http://studynursing.blogspot.com/2010/12/renal-failure.html)

[Jack]

I'm not sure if it is generally true in cases of Wegener's induced renal failure, but in my case I had no physical symptoms that I could identify and even continued to pass sufficient urine right up until the end. That is why it is so important that the doctor is familiar with the risks and can order the right tests.

[Minneapolismark]

That is good to know. It is almost as if the symptoms of Wegener's are XYZ except when they aren't.

It kind of bugs me when I see one of my doctors with a symptom and they act patronizing, seemingly as if to say "that isn't part of this" or "that is your imagination."
I then ask them whether it was obvious that a badly stuffed nose would indicate a life-threatening ailment!