I Wasn’t Prepared for Kidney Damage After My Double-lung Transplant

“You have stage 3 kidney disease,” the doctor told me.

I remember that first appointment with my nephrologist as a blur. Choking back tears, I took in the news with trepidation. I wasn’t prepared for this world of newly discovered health problems. Yet there I was, three weeks after my double-lung transplant, learning how to take care of my kidneys.

During my transplant, I was only in  the hospital for 13 days. Walking out in less time than I would have during a typical cystic fibrosis exacerbation felt like a giant win. I may have had shaky legs from medications and weakness from having my chest sawed in half during a nine-hour surgery, but boy was I flying high on new life.

But the amount of transplant medications and antibiotics in my bloodstream was greater than normal right before I left the hospital. Doctors thought it was a fluke and sent me home anyway, because it happened to be Labor Day weekend. “Get home so you can enjoy your new life,” they told me.

I certainly didn’t plan to develop post-transplant diabetes, a common side effect of high levels of steroids pumped through my veins. This is done to prevent organ rejection by knocking out my immune system after transplant. Later, learning a new schedule of blood sugar checks, insulin injections, and symptoms monitoring would be challenging.

While at home after being released from the hospital following transplant, I became nauseous, had terrible headaches, and was easily agitated. But I chalked it up to my body getting used to the new medication regimen and a host of side effects. My blood sugars, however, were way off, which forced me to check with the on-call doctor.

As it turned out, my kidney levels had gone through the roof and my potassium was sky-high. I was toxic.

Even though I had blood levels drawn while still in the hospital, my kidney situation went unnoticed by the transplant team, due to the long Labor Day weekend. For five days, my kidneys were angry and no one knew it — not even me.

The nurse called me after the long weekend with a sense of urgency in her voice. “You need to get to the ER,” she said.

Meanwhile, she wanted to order a medication for me that would have caused diarrhea, but I had a long drive ahead for a follow-up appointment, which would have been a disaster.

I also told her I planned to stop a different intravenous medication because I knew I was toxic.

Later, I met with the doctor, who confirmed I was nephrotoxic. I was hospitalized for 21 days while doctors tried to get my kidneys back to a functioning level and my potassium to a normal range. But it was too late, the damage had been done. I would have to figure out my “new normal” with stage 3 kidney disease.

The scariest part was that sometimes I didn’t have symptoms when my potassium was high or when my kidney function had skyrocketed. Other times, I would feel nauseous and more fatigued, like I was walking around in a daze. This led to multiple ER visits.

Navigating changes to my body after transplant is an interesting process. It is a constant learning curve, as my body has changed so drastically since before transplant. Part of me is discouraged because I thought it’d be easier than it has been, while the other part is always ready for adventure and the challenge of figuring out this new life and its intricate details.

World Kidney Day, which was March 11, reminded us all to be kind to our kidneys. I’m grateful my kidneys are functioning at 50%. I’m also grateful that my kidneys have been stable enough to not have the “transplant talk.”

My new transplant team has listened to my concerns and lowered the target level of one of my anti-rejection medications so that my kidneys don’t get angry. I’m thankful I have found the sweet spot to avoid disturbing my kidneys.

I have had to mourn the loss of my kidney function. It’s been a grieving process. However, I’m grateful that my kidneys seem to be resilient, like me, to anything I throw at them, even anti-rejection medications.

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