A reliable healthcare team helps me manage my PH and CKD

Managing kidney disease can be challenging, but good providers make it easier

Jen Cueva avatar

by Jen Cueva |

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It’s 7 p.m. on a Thursday, and my husband, Manny, and I are cooking dinner. Suddenly, my phone rings. Manny looks concerned and says, “It’s the nephrologist.”

I already have a gut feeling it won’t be good news. My bloodwork has been all over the place the past few months. I’ve been working closely with my nephrologist and pulmonary hypertension (PH) team to tweak my medications in hopes of bringing my chronic kidney disease (CKD) back to my personal baseline at stage 3.

The news isn’t all negative. My kidney function is improving, but my electrolyte levels have seen better days, with no progress since last week. I’ll embrace it. With unwavering support from my nephrologist, we’ll persist until we conquer this challenge. She reminds me to reach out if my symptoms worsen.

Managing PH alongside CKD has its challenges. PH has led to congestive heart failure for me, and I must take diuretics to help flush out the excess water and sodium that build up as a result. However, this can throw my electrolyte levels off balance and mess with my kidneys. Taking diuretics requires delicate adjustments and frequent lab visits; finding the right combination and dosage for me is like walking a tightrope.

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I’m grateful for my team of healthcare providers who stay on top of my test results. Their commitment to open communication means the world to me. As I end the call with my nephrologist, she thanks me for undergoing frequent labs and discussing the results over the phone.

It’s easier to ask questions without fear of judgment or feeling like a burden. My providers’ reassurance and understanding have helped me navigate this overwhelming journey. Together, we ensure I feel my best.

Overcoming obstacles together

Summer can pose additional challenges in managing kidney disease, but thankfully, I have a fantastic medical team and a knowledgeable dietitian to help me.

Because of CKD, my doctors advise me to limit my fluid intake to 1.5 liters per day. However, it’s difficult during the hotter months to ensure I’m consuming enough water to keep me hydrated without going past my limit. With my trusty water bottle always at my side, I closely monitor my fluid and electrolyte intake.

My team also enables me to lead an active lifestyle during the summer. Heat and high activity levels can be tough for me to handle, but I aim to keep up with physical activity year-round, making sure to consult my doctors before diving into anything strenuous. Thanks to their recommendations, cooling towels and fans have become my workout buddies. These precautions allow me to embrace summer pastimes like swimming and hiking.

Finally, my dietitian has helped me adjust to a diet rich in essential nutrients like protein and potassium while avoiding foods that could be harmful to me. Trust me, it took some time to adapt, but when I see improvements in my lab results, I can confidently say the change has been worth it.

By empowering myself with knowledge, I’m taking charge of my conditions and truly savoring life. With a trustworthy team of doctors, friends, and family supporting me, I can live my best life while managing PH and CKD.

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.


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