Learning about disease progression is a bitter pill to swallow

Living with a rare or chronic disease is never easy, as it creates many emotional, financial, physical, and social challenges. One difficult aspect is learning that a particular condition has progressed. How are we supposed to cope with news that our health is getting worse? I face this unfortunate reality frequently because of pulmonary hypertension (PH) and coexisting conditions.

At a routine nephrology appointment, I recently learned that my chronic kidney disease (CKD) has progressed from stage 3 to stage 4. Until now, I’d been able to maintain it at stage 3 for a while, which meant my kidneys were moderately damaged. Now they’ve worsened to the last stage before kidney failure.

While this development is discouraging, I’m incredibly grateful for the support of my healthcare team. Because I looked and felt OK, my kidney doctor and I decided to approach things differently than we might have before. Instead of focusing only on the numbers, we decided to monitor how I feel and how much extra fluid my body retains. (My kidneys don’t always filter out waste and extra fluid in my body as they should.)

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This approach means checking my kidney lab values every month or more, which we’ve been doing. So far, this routine seems to be working for me, though we did decide to have fewer such labs — a plus for me. Fortunately, my medical team respects my wishes.

I’ve dropped about 15 pounds in the past year, so my nephrologist said it wouldn’t hurt to gain some weight. She suggested I eat more protein and drink whenever I’m thirsty. I’d been restricted to drinking only 1.5 liters of liquids a day.

I take routine doses of diuretics to prevent congestive heart failure and a worsening of my PH, with additional doses as needed based on my weight and fluid retention. Usually, I know when my belly is starting to swell, because it tightens like a basketball. When that happens, I have to take more diuretics to remove the extra water weight from my body. If I don’t, it can exacerbate some of my PH symptoms, such as shortness of breath.

Feeling defeated

After hearing the bad news about my progression, I gathered my strength and walked outside to meet my daughter, who was my driver for the day. The ride home was quiet, as I felt numb and a little defeated. I tend to shut down when I receive bad news, especially if I’m around my daughter. As a mom, I usually keep health updates like this one to myself for a while because I don’t want my daughter to worry or see me upset.

That evening, my husband, Manny, asked about my appointment. Trying to mask my concern, I told him that my CKD had progressed and we’d decided against any new treatment strategies for now. An emotional conversation about my health followed, and Manny’s eyes teared up. I reminded him that whatever the future brings, we’ll get through it together, as always.

It’s important for Manny to process his emotions regarding my health, just as I have to do. We continually support and remind each other how far we’ve come in managing PH and my coexisting conditions.

Support and self-care

Moments like these make me grateful that I have a solid support system in my life. My family and friends have always been there for me through thick and thin, especially during the most difficult times. They offer encouragement, lend an ear when I need to vent, and provide practical help when I struggle. They also allow me space to process my emotions.

In addition to my personal support system, I’ve also found solace in connecting with others who are going through similar experiences. Online forums and social media have been a great source of comfort and understanding. The PH News Forums, for example, were one of the first places I shared this recent update of my health status. It’s reassuring to know that I’m not alone in my struggles and that others truly understand what it’s like to live with PH or other chronic conditions.

Through all of it, I’ve learned the importance of self-care. Taking care of myself emotionally, mentally, and physically is my top priority. I know it’s an ongoing battle requiring me to listen to my body, practice relaxation techniques, and seek professional help as needed. I must be kind to myself and allow myself to grieve.

I want to be prepared for what comes next. No one knows what the future holds, so we just make the best of our situation and roll with it.

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.