How to protect your kidneys while managing a rare disease

A rare disease like pulmonary hypertension (PH) is challenging enough to manage. Add other coexisting conditions and it gets even more complicated.

I have several coexisting conditions, but my stage 3 chronic kidney disease (CKD) is the most difficult to manage alongside my PH. I must be organized and proactive​​ in responding to each condition.

In CKD, the kidneys are damaged and can’t filter blood properly. It is classified in five stages, depending on the severity of decline in kidney function. At each stage, taking steps to slow down kidney damage is essential.

March is National Kidney Month, and this year’s theme is “follow your kidney health.” As many as 90% of Americans with CKD don’t know they have it until it is advanced, as there are often no noticeable symptoms during the early stages. Kidney disease doesn’t discriminate, including across rare diseases.

We need our kidneys to filter out toxins. When this doesn’t happen, it certainly isn’t fun, as I can attest to. I’ve experienced it too many times to count. The horrific itching, nausea, and back and flank pain from poor kidney function are sometimes debilitating. It can lead to hospitalization and the need for careful monitoring of my fluid intake, medications, and more importantly, diuretics.

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A trustworthy healthcare team is essential

Persistent advocacy and hard work paid off for me, as I was able to partner with a trusted healthcare team dedicated to helping me manage all of my conditions simultaneously. Team members provide detailed guidance and advice, monitor changes in my health, and recommend treatment options that best fit my needs. We review and discuss the results of regular blood tests and other evaluations to ensure I obtain the necessary care.

A trustworthy healthcare team also helps me understand the risks associated with each condition. This enables me to make informed decisions about my care. We find what’s best for my CKD, PH, and other coexisting conditions through frequent communication and teamwork.

Others in the rare disease community

Unfortunately, kidney disease is not uncommon in the greater rare disease community. It can develop from harsh medications or other treatments as well as disease processes. My CKD is most likely due to my medications.

To discuss CKD in other rare diseases, I reached out to two colleagues here at Bionews, the parent company of this website. Sam Kirton, a Pulmonary Fibrosis News columnist, and Price Wooldridge, a forums moderator at Lambert-Eaton News, offered their thoughts about CKD.

Sam shares that he didn’t develop chronic kidney disease until after receiving a double-lung transplant. His post-transplant medications led to CKD. Sam is currently at stage 3B, he says, and routine lab checks and appointments with a nephrologist are now part of his health management plan.

Price says he most likely developed kidney disease because of uncontrolled diabetes. However, it wasn’t until after he was diagnosed with two autoimmune diseases, including Lambert-Eaton myasthenic syndrome, that doctors began to look more closely at his decreased kidney function. Price is at stage 4 CKD.

When I asked Sam and Price to share some tips to help others diagnosed with CKD, they suggested the following:

• Know your body and pay attention when you think your lab work is out of whack.
• Pay particular attention to a blood test that measures the glomerular filtration rate, an indicator of kidney health.
• Accept medications that might help. Sam works with his care team to have a specific medication strategy tailored to his needs.
• Keep your blood pressure under control. Price monitors his blood pressure at home to ensure that it’s stable.
• Make sure your diabetes is under control. Price is now insulin-dependent and stresses that having high glucose in the blood isn’t healthy for our kidneys.
• Watch your diet and read food labels. Certain foods are hard on the kidneys. Potassium-rich foods, for example, aren’t good for people with CKD. It’s best to speak with a nutritionist or a dietitian about what’s best for your CKD.

Even if you haven’t been diagnosed with CKD, if you have PH, you and your doctors should keep tabs on your kidney health. I can attest that once kidney function decreases, it’s a constant struggle that makes life with PH more challenging.

Be proactive

Sam and Price share a couple ways to protect your kidneys while managing a rare disease:

• Understand your medications’ potential side effects and always ask your doctors questions.
• Managing a rare disease is an everyday endeavor, and one condition can affect the other. If this gets you down, as it will on some days, ask your doctor for help or talk to friends and loved ones.

For these reasons and many more, we must know our risks, schedule lab tests, and learn our numbers.

To read more about CKD, please visit the National Kidney Foundation.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.