Any kidney involvemnt

[maria garcia]

Hello Maria, sorry to hear your daughter has kidney involvement -- it makes WG even more confusing. Holly's kidney function fell to 25-30% while in ER a year ago and her biopsy indicated significant damage (scarring - some permanent). The doctors weren't very optimistic about her recovery based on the biopsy. She has since surprised them by recovering to approx. 80% kidney function in one year. So, although kidney damage is considered irreversible, there is always hope that it isn't "permanent" damage and can heal with time. Having youth in her corner is a definite plus. For what it is worth, I let Holly's illness consume me for quite awhile and have now accepted that all we can do as parents is have open communication and closely monitor anything that would indicate a WG flare or kidney problems. The key is

immediate intervention and treatment to lessen any further damage to the kidneys. All our best!

What test was used to measure her kidney function ? The doctor hasn't told me she has kidney involvement just some test results im not feeling comfortable with. I am going to take her to a nephrologist. What meds did Holly take that worked so well on Her? Is she on a maintence treatment.

[KathyB]

Apart from from ear pressure (popping), my initial symptom was a large amount of blood in my urine and a creatinine rate so high I was in acute kidney failure. Like others said, it crept up on me, too. Since I have a low functioning left kidney due to polycystic issues, a history of blood in my urine, and hypothyroidism, my GP orders bloodwork every six months. In April, my creatinine was 1.1 (my normal). In August, it was over 3.5 then topped out at 4.7 before WG diagnosis. Extreme fatigue, lack of appetite, bloating, back and body aches were my summer symptoms. I never imagined kidney issues. (Mid-summer, I was being tested for GI problems.) But WG wasn't diagnosed until the lungs become engaged. I had a kidney biopsy to confirm diagnosis. At that point, it was confirmed that WG had all but destroyed my left kidney and about 50% of my right kidney. So with the other damaged 50% of my right kidney, I've recovered very well and my new "normal" kidney function is about 1.8 with no dialysis needed as yet. Kudos, Maria, your daughter has recovered so much of her kidney function! I'm sure prompt diagnosis and aggressive treatment helped us both. We have been checking my function every 1-2 weeks, but I anticipate less testing in the future!

KB