At age 12, Jennifer was diagnosed with Dense Deposit Disease, a rare autoimmune disease that alters the kidney’s ability to filter waste. She was passed between specialists and was told to expect dialysis and a transplant by the time she reached adulthood. About half of the people affected by DDD will progress to kidney failure within 10 years of being diagnosed and 85% will develop kidney failure within 20 years. Jennifer’s diagnosis was no different and she learned at an early age how to manage her symptoms with a combination of diet, lifestyle and a complicated medication routine of 19 daily pills. Jennifer thought she had been told everything she needed to know to live with Stage 4 kidney disease and avoid dialysis and transplant. She trusted her doctors and her knowledge about her condition.
That was, until years later when Jennifer woke up with a shooting pain in her foot. It was intermittent at first and more persistent and painful as time went on. Jennifer was again passed around from her primary care provider to urgent care and ultimately to a podiatrist who assumed it was a hairline fracture, undetectable by x-Ray and recommended a stabilizing boot. Looking back, what surprises Jennifer the most is that none of these doctors noted the kidney disease in her medical records and knew to test her for Gout, a known, systemic complication of CKD that effects more than 25% of kidney patients.
According to Mayo Clinic, Gout is a common and complex form of arthritis that can affect anyone. It's characterized by sudden, severe attacks of pain, swelling, redness and tenderness in one or more joints and Jennifer describes her pain as “shocking- like a hot band wrapping around your body crushing your bones.”
For Jennifer, her Gout developed because her kidneys are not filtering her body’s uric acid properly. She was never warned about it and it was not listed as a potential symptom of her kidney issues. The pain and complications interrupted her life- she missed family events, work and her son’s baseball games.
From that point Jennifer took control of her medical care. She switched nephrologists and added a Rheumatologist to her care team who now works hand in hand managing her gout flares and kidney disease symptoms. Through a combination of medications and treatment infusions, Jennifer has been able to take her life off hold. She’s able to plan, travel and put her healthcare complications on a mental back burner.
When it comes to advocating for yourself, “it took me a long time to learn how to do that,” Jennifer explains. She wants people to know this is not an “old man problem.” She hopes that if she can save even one or two patients the type of pain she went through, her advocacy and education efforts will be worth it. “It doesn’t need to get that bad. We don’t need suffer.”
Thank you to Horizon for your partnership this World Kidney Month