Avoiding kidney disease doesn’t make it go away

SURVIVAL TIP: Get your blood work done at least annually, because full-blown symptoms of kidney failure do not show themselves until patients need dialysis. Other medical issues, such as high blood pressure and diabetes, increase the chance of kidney failure.

MAY 2002

My nephrologist called me at work to tell me the results of my blood tests. He said he was obliged to tell me the statistical dangers. I think he was talking about the disease. Maybe it was the dangers of the biopsy. Anyway, one in a bazillion was death. Or maybe one in three million. I don’t remember. I was crying hysterically when I hung up. He apologized and said he wouldn’t have called me at work if he knew I would be so upset. I explained that he had just given me a death sentence, and he said that wasn’t the case. But it’s what I heard. I was 32. Biopsy. Kidney failure. Dialysis. Serious chances of death.

My grandmother died in 2000, and Jeff and I had plans to paint her house out of town during summer vacation. So I put off the biopsy until July. I didn’t really tell Jeff that I was concerned. I had plans. We had plans. And I wasn’t letting this kidney thing ruin that.

So in July, I had a biopsy. My mom and an aunt came up from their homes a couple of hours away. Jeff was away for military training. I was terrified of the IV; I hadn’t gotten to the part about being afraid of the biopsy. They said I would be in “twilight” during the procedure because I had to move from the bed to the X-ray table and back. The nurses insisted on placing the IV in my hand. I have had IVs in my hand, and it hurts from insertion to removal. I have small hands, and probably tiny veins.

It took a call to the doctor for Valium and several tries to get an IV in the opposite wrist. Finally we got to the biopsy after Mama and my aunt offered lots of cuddling, prayers and soothing words. We ended up getting a dialysis nurse to place the IV.

The funny thing is that I remember the biopsy. My doctor and an assistant—maybe a tech?—did the biopsy. They took a few samples. It is similar to a breast biopsy. The doctor asked if I wanted to see a sample. And I remember him showing me something and laughing when I said, “It looks like a booger!”

I stayed overnight in the hospital because I had a little more blood in my urine than they liked. During this stay, I found out I had a great friend. Only a GREAT friend would hold a trashcan while you projectile vomit from a drug allergy. My mom stayed around the clock. But she got lucky when she took that dinner break. Poor Bridget.

The doc called a week or so later to say that I was lucky. He said the biopsy revealed that my kidney was so “hot” that a month later I could have been on dialysis from IgA nephritis. Fortunately or unfortunately, I was never sick as a child. It turns out that my body makes too much of the antibody Immunoglobulin A that fends off bacteria, viruses and disease. And by my 30s, that same IgA was gunking up my kidneys and preventing them from properly cleaning my blood. And that’s when I was sicker with a virus than I had ever been.

I went to the office to see what the next step would be. Fortunately I had Jeff with me to try and understand what another nephrologist in the office told us about my prognosis and the “goal standard”.

Are you going through dialysis? Do you have questions? Comments? Please let me know. Details on dialysis are around the corner, and I’m sure we have common fears, thoughts and experiences. Check back Tuesday for more insight!

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About dialysisgal

When I joined the 450,000 Americans on dialysis, I wondered what "normal" would be. Would people stare at my access and ask what was wrong? In this blog, I hope to save other patients and their families from the difficulties I have faced. I want to share my experiences, what I learned, had to ask and was shocked to find. I am not a medical professional, but I hope we can have a conversation to help you better understand what you or someone you love with chronic kidney disease (CKD) might expect while living with dialysis.
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5 Responses to Avoiding kidney disease doesn’t make it go away

  1. Eli Pacheco says:

    I have slight high blood pressure and Type II diabetes, so this ought to be on my radar.

    Liked by 1 person

    • dialysisgal says:

      Thank you for stopping by and sharing. One in two people with diabetes develops kidney disease. I’ll look into hypertension stats, but it’s notable that my old doctors have Nephrology Associates, Hypertension and Kidney Disease Specialists on the sign. Take care of yourself!

      Liked by 1 person

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