Our neph never told us the cause. A biopsy was not done at the time. I read that they don’t know the cause in 50% of the cases. Is this true?
Hi Heather, it’s much, much less of the time than 50% that they don’t know the cause. The figures for causes of kidney failure are in the United States Renal Data System (USRDS) Annual Data Report (ADR). From table A7 from ADR for 2005 (most recent one; reports through 2003), here are the causes:
• Type 2 diabetes - 40.5%
• High blood pressure - 27.1%
• Glomerular diseases - 8.5% (focal glomerulosclerosis, membranous nephropathy, IgA nephropathy, IgM nephropathy, Goodpasture’s, glomerulonephritis, etc.)
• MISSING/UNCERTAIN - 4.8%
• Miscellaneous - 4.4% (bone marrow transplant complications, sickle cell anemia or trait, AIDS nephropathy, traumatic/surgical loss of kidney, hepatornal syndrome, tubular necrosis, post-partum kidney failure)
• Type 1 diabetes - 4.3%
• Interstitial nephritis/pyelonephritis - 3.6% (chronic pyelonephritis, analgesic (painkiller) abuse, nephrolithiasis (kidney stones), chronic or acute interstitial nephritis, nephrocalcinosis)
• Cystic/hereditary/congenital diseases - 3.2% (PKD, medullary cystic disease, Alport’s, tuberous sclerosis, cystinosis, primary oxalosis, Fabry’s disease, congenital nephrotic syndrome, Drash syndrome, congenital obstructive uropathy (blocked ureter), renal hypoplasia or dysplasia, prune belly syndrome)
• Secondary glomerulonephritis/vasculitis - 2.2% (Lupus, polyarteritis, Wegener’s granulomatosis, Henoch-Schonlein syndrome, vasculitis, scleroderma, hemolytic uremic syndrome, heroin nephropathy, etc.)
• Tumors - 2.1%
As you can see, the cause of kidney failure is unknown less than 5% of the time. I thnk it’s very important to know the cause of kidney failure, because that can have other health implications that you need to know about. You may need to ask the doctor to tell you, or you may want to get a second opinion.
Thank you Dori for straightening out our thinking on this. I Know I had read several times that they didn’t know the cause in 50% of the cases so I am surprised to hear otherwise. Is it possible to find out years after the fact already on dialysis the cause such as in having a biopsy? Is that risky?
Is it possible to find out years after the fact already on dialysis the cause such as in having a biopsy? Is that risky?
I don’t actually know. Good question for your nephrologist.
Most of the time in cases of end-stage renal disease where they don’t know what the original kidney disease was, it’s because the kidneys are so scarred and/or shrunken by the time of the biopsy that it’s impossible to tell when examining the biopsy tissue samples. There are no distinguishing features left.
Pierre
This is just a bit of semantics, but Dori you are listing the name or “Type” of disease by percentage which is not the same percentage as what "caused "the disease eg.drugs,environmental causes or genetics ). For instance I suddenly developed FSGS in my 30’s, the cause of this is unknown ( i personally suspest the “cause” was a horrendous flu I had a month before). I was not born with this “type” of disease unlike some other disease “types”.
Does that make sense???
Dori’s posting was based on what is reported by the United States Renal Data System, the data registry for people with kidney failure in the U.S. In the U.S., a variety of data elements are collected at the start of first treatment (dialysis or transplant). Doctors are asked to report the cause of kidney failure using ICD-9 codes that are on the back of the form. For instance, if I’m reading the codes correctly, the ICD-9 code for FSGS is 5821A. The ICD-9 code for renal disease due to hypertension is 4039D. The ICD-9 code for Type II diabetes is 2500A.
This form doesn’t speculate what could have caused that condition unless it is a co-morbid condition. Doctors have 20 co-morbid conditions to choose from and are instructed to include any that are present now or have been present over the past 10 years.
Here’s the form that says what data is collected on every new dialysis or transplant patient:
As time has gone by, the data reporting seems to be getting more and more precise. Years ago, I remember when just about everyone had the diagnosis of glomerulonephritis. It appears that either this diagnosis is not as common as it once was or (more likely) doctors are doing a better job of diagnosing the causes of kidney disease and failure.
Infections certainly do seem to hasten kidney failure when someone has kidney damage. I’ve seen patients who have had stable but reduced kidney function develop kidney failure when they get have the flu. We know that E-coli infection can cause hemolytic uremic syndrome that causes children’s kidneys to fail. A virus can cause cardiomyopathy requiring heart transplantation in someone who was previously healthy. I suspect there is a lot to learn about the effects of viruses.
Here are a couple of fact sheets on FSGS:
– http://www.nephcure.org/Info_aboutfsgs.html
– http://www.kidney.org.uk/Medical-Info/kidney-disease/fsgs.html
Hi y’all,
Beachy wrote:
This is just a bit of semantics, but Dori you are listing the name or “Type” of disease by percentage which is not the same percentage as what "caused "the disease eg.drugs,environmental causes or genetics ). For instance I suddenly developed FSGS in my 30’s, the cause of this is unknown ( i personally suspest the “cause” was a horrendous flu I had a month before). I was not born with this “type” of disease unlike some other disease “types”. Does that make sense???
It does–but it’s unlikely that we’ll ever have much data on what triggers the various disease that then cause the kidneys to fail. I know of a set of identical twins, for example, where one got type 1 diabetes in high school after a flu, and the other didn’t get the flu or diabetes.
Still, I think the question had more to do with the diseases than the triggers. Or, at least in terms of future health ramifications, it’s more important to know the disease than the original trigger because regardless of what triggers diabetes or any other disease, once you have it, you have it.
Thank you Beth and Dori for all the data you provide. It is so helpful. And perhaps as Pierre said, our neph did not do a biopsy as there was too much scarring to determine what the cause had been.