An adult man surrounded by a pill box, meal replacement drink, hand with fingernails showing signs of kidney disease, and loose strands of hair.

Things They Never Tell You About Chronic Kidney Disease

Before my mother left us, I was her caregiver for a few years. She had developed several illnesses over her 88 years on this earth. I used to take care of her appearance when she was no longer able to do so. She liked looking “sharp” and dress up every day.

Side effects from CKD

I would do her toes and nails. On one of her doctor appointments the healthcare professional told me it was dangerous for me to do that because she had diabetes along with CKD. So, he suggested I started taking her to a podiatrist to get her feet done.

He told me that her toenails were looked a different color and the shape had change. I asked if the changes were happening because she was getting sick. He said this was normal for someone with chronic kidney disease. She had this illness for years but none of us had ever heard of this before. I was told that the kidneys were not functioning properly.

She also had an outside caregiver that would rub her feet at home daily, and she always said how good they felt afterwards. His skin was always very dry and felt rough. We had to put some sort of oil on her at least twice a day.

She had a beautiful head of long natural hair. It started breaking off and when I would comb it. I could see the bald spots from where it was falling out. So, I started buying wigs for her. I was shocked at these things that were happening to her. She wasn’t on dialysis, and I wasn’t told about these side effects. I was told there was a waste that builds up if you have chronic kidney disease. This is why the fingernails, toenails and hair were affected.

One of the things I noticed was that she didn't like food anymore. She was provided with different vitamins and special drinks. I was told that this was normal. She also had several illnesses and was on many medications. We had to work very closely with her doctor to keep things straight. At one point, she was taking almost 20 pills a day.

Advice for others

My advice would be if you are a patient with chronic kidney disease or caregiver, speak with your health care team when you notice any changes in the body. Your doctor might need to order blood work too or change medications.

My doctor said my mother's long luxurious hair would grow back. At this point in her life, she no longer was concerned about long hair she said she didn't want to want her hair back. She kept her hair cut very, very short and wore wigs.

Of course, I thought this was a little extreme, but I wanted her to be happy. But if you want to keep your hair, do what's best for you. I would suggest not using perms or colors. Changing your diet might help also.

I realized that chronic kidney disease was a part of her life, but she never let that define who she was. When she would talk to the family, she said that having long hair, painted nails, pretty feet and clothes didn't define who you are. You must find things that add value to your life. We all must know what our self-worth is. Hers were family.

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