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Wednesday, May 4, 2016
Question for Dr. Lam if possible
Hello, Dr. Lam,
You have answered a question or two for me in the past and you are very detailed, kind, and helpful. So I hope you will also be willing to respond to this.
Quick backround is I have a history of Crohn`s Disease with bowel resections X2 and most recently perianal fistulas. I am not under the care of a GI doctor but rather treat myself.
I also have a history of multiple kidney stones and the left kidney is scarred, is atrophied and functions at 22 percent. It has 4 stones but the urologist says he may leave them alone since it is scarred. The right kidney is fine but on April 5 I had two 2.5 cm stones removed from the right kidney. No one is sure why I keep forming stones and large ones, too.
My concern is for over a year now every urine test I take shows 3+ occult blod (which I know can be due to kidney stomes) and 2+ protein. I had sudden high BP at 179/110 late last year and now take Lisinopril 10 mg 1 x a day.
I had a 24-hour urine test last month. It showed normal creatinine w/EGFR at 0.81 which I imagine is due to the right kidney working normally. But the protein/creatinine ratio is 1101 and the protein total is 1652. I was told that is 10 times higher than what normal people have.
They think I might have FSGS but the only way to know is to do a kidney biopsy which I do not want to do. My questions are can you have FSGS in only one kidney? If not, what could be the reasons for a high protein level and does it need to be treated? What happens if I live with the high protein level without seeking treatment?
Thank you for your help, Dr. Lam.
It sounds like your situation has gotten quite a bit more complicated than it was back in 2007, when you wrote about your kidney infection. It is fortunate that your right kidney is apparently working normally, and hopefully it will continue to do so. Your doctors are right to be concerned about focal segmental glomerulosclerosis (FSGS), because this does have a tendency to develop in people who are born with one kidney, or who lose the function of one. FSGS could explain your protein in the urine, as well as the sudden high blood pressure. However, protein in the urine and high blood pressure may both be caused by the bad left kidney, so again, removal of it may be a consideration in the future (but probably not now if it's still functioning at 22%). Unfortunately, there is no good treatment for FSGS, and it does often lead to "end stage" kidney disease and the need for dialysis treatments.
The diagnosis of FSGS can be made by a kidney biopsy, but there would be a risk to this procedure, since you only have one good kidney; and if there should be bleeding as a complication of the biopsy, there would be a small chance that you could lose that good kidney.
As to the reason for your kidney stones, people who have bowel diseases and have had parts of the small bowel removed may have a tendency to form stones made of calcium oxalate, because their remaining bowel absorbs too much oxalate from food. If this is the case, the diagnosis of oxalate stones can be made by analyzing one of the stones and/or measuring the amount of oxalate in a 24-hour urine collection. If there is an abnormally high amount of oxalate in the urine, the patient should limit/avoid foods high in oxalate (chocolate, tea, nuts, spinach, rhubarb, to name a few). In general, high water intake and low salt intake also help to reduce stone formation -- and a low salt diet also helps to control blood pressure.
For now, the best things that you can do are to 1) keep your blood pressure under excellent control by restricting your salt intake and taking your meds faithfully, 2) undergo testing to see whether you have oxalate stones, 3) seek treatment promptly if you develop another kidney infection or more stones, since either of these conditions could cause you to lose more kidney function. You should be very closely followed by a kidney specialist, as it sounds like you are. Best of luck to you!
Mildred Lam, MD
Associate Professor of Medicine
School of Medicine
Case Western Reserve University