A Surprise Diagnosis: Chronic Kidney Disease

By Kathleen Hoffman, PhD, MSPH

March is National Kidney Month, when communities across the country work to raise awareness about kidney disease. Not too worried? You might want to check: The CDC estimates that 15% of adults are estimated to have Chronic Kidney Disease (CKD). That’s 37 million people in the US alone. Even worse: Most (9 in 10) adults with CKD  do not know they have it.  You can be unaware even if you’re in serious danger of kidney failure. One in 2 people with very low kidney function who are not on dialysis don’t even know they have CKD.1

Disbelief and confusion characterize their experience.

Recently I was diagnosed with Type II Diabetes along with kidney disease. I was less surprised about the diabetes, given my strong family history and the fact that my labs have been creeping up for the past two years. The kidney disease, on the other hand, was a surprise and I am still processing all of having to now deal with both.

Has anyone else developed Chronic Kidney Disease who also has Congestive Heart Failure?

CKD refers to a gradual loss of kidney function over 3 months or more.2 Any condition affecting kidney function can cause CKD: It occurs with common conditions like high blood pressure, obesity, and diabetes or it can be genetic, have no known cause, or be the result of rare diseases such as Alport syndrome or C3 glomerulonephritis (C3GN).3,4 Some groups of people are more likely to develop kidney disease, including communities with high rates of hypertension, such as African-Americans, Latinx, and Native Americans.5

CKD and Inspire

Because CKD results from so many conditions, it’s a common topic among Inspire members: Right now there are nearly 27,000 members of Inspire and over 46,000 posts discussing CKD.

Some members are discussing relatively common conditions and treatments like this member in WomenHeart Connect support community on Inspire,”I was wondering if any of the people that have congestive heart failure are starting to have issues with their kidneys.” While others with rare diseases find a community on Inspire. There are at least 150 different disorders that are considered to be rare kidney diseases. One member with a rare condition offers others his experience. He has Focal Segmental Glomulersclerosis (FSGS), a disease causing kidney damage which only affects 7 out of 1 million people.6

I have FSGS and hypothyroidism which both developed around the age of 16. I have been on a number of different treatments and have gone through some pretty unique experiences. I’m glad to have met people on this site going through similar struggles and I would love to help any that need encouragement going through tough times.

People with all kinds of CKD, from more common conditions like high blood pressure and diabetes to rare conditions, may come to Inspire looking for encouragement and experience from people along the same journey, and they stay to discuss their treatments with each other bringing what they learn back to their doctors. In addition, they are eager to participate in research to help in the development and marketing of treatments for their condition.

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1 CDC: https://www.cdc.gov/kidneydisease/publications-resources/2019-national-facts.html
2 National Kidney Foundation: https://www.kidney.org/kidneydisease/howkidneyswrk#causes
3Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/chronic-kidney-disease/symptoms-causes/syc-20354521
4 University of Iowa Hospitals and Clinics Renal Genetics Clinic: https://uihc.org/rare-kidney-diseases
5American College of Cardiology: https://www.acc.org/latest-in-cardiology/articles/2020/04/06/08/53/racial-disparities-in-hypertension-prevalence-and-management
6National Organization for Rare Disorders (NORD): https://rarediseases.org/rare-diseases/focal-segmental-glomerulosclerosis/