Managing kidney disease in life post-transplant

Pulmonary hypertension (PH) patients often face a similar issue: wondering where the nearest bathroom is. Since many people with PH take diuretics as a maintenance treatment for heart failure, that means they have to pee. A lot. This can be a funny, frustrating, or sometimes awkward aspect of the illness. But it’s just one example of how the kidneys can become entangled when caring for the heart and lungs.

While I was living with PH, I didn’t think much about it. Aside from my thyroid disease flaring up for a few months in college, my fluid balance was pretty well managed with medication. Of course, the trips to the bathroom were sometimes annoying, but other than that, my kidneys weren’t a frequent topic of conversation.

This all changed after I had a heart and lung transplant. Following my procedure in 2018, my kidney levels never returned to normal. This quick decline was a result of several factors, but the most prominent was the regimen of immunosuppressive drugs that all transplant patients have to take to avoid rejection. One of the most severe side effects is their impact on the kidneys.

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For me, the effects were severe. Today, I’m living with stage 3 kidney disease, and I see a nephrologist regularly. Since I cannot come off the medications that are causing the problem, the best my team and I can do is to closely observe my numbers and work to keep my kidneys stable for as long as possible.

Having low-functioning kidneys affects my life in several ways, from the food I eat to the treatment options that are available to me.

Diet

One of the most significant considerations for the kidneys is diet. I tend to struggle most with managing my potassium level. More often than not, it runs high. For this reason, I avoid potassium-rich foods, such as bananas and potatoes. I also focus on proper hydration. The goal is to drink enough fluids to help my kidneys flush out my medications, while not drinking so much that I end up with fluid overload. To monitor these different considerations, I do lab work regularly. My doctor also prescribed me an as-needed medication called Lokelma (sodium zirconium cyclosilicate), which helps manage my potassium when it is high.

Lifestyle

A number of day-to-day factors can either help or harm the kidneys. One thing that can help is exercise, as it increases blood flow to the kidneys, boosting performance. For this reason, I keep a moderate level of exercise in my routine, whenever possible.

Of course, toxins can hurt the kidneys, increasing their workload. This is why, more often than not, I choose to abstain from drinking alcohol. Given the harm it can cause, I never feel the indulgence is worth the trouble.

Treatment and testing

Finally, my team always considers my kidneys when forming a treatment plan. In some cases, they avoid certain medications, such as specific antibiotics that can be hard on the kidneys. Similarly, they will avoid any testing that involves the use of dye, such as CT scans. This is because the dye is filtered through the kidneys, increasing their workload, similar to a toxin.

Recently, my team considered a test involving dye when I was dealing with a bleeding issue in my lungs. It was put on reserve as a last resort, but ultimately, we didn’t pursue it. This is just one example of testing that we’ve avoided to protect my kidneys.

It’s easy to chalk this all up to my transplant, but the truth is that the damage likely started with PH. More specifically, it is heart failure over time that can cause kidney injury due to poor blood flow. It’s probable that, while clinically functional, my kidneys were not in top shape when I went in for transplant. For this reason, I definitely advise PH patients who may one day face a transplant to talk with their team about how they can proactively care for their kidneys in the pre-transplant period.

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.