In Memory of a Special PHriend, With Gratitude

Last month, I lost a friend within my rare disease community, pulmonary hypertension (PH). PH continuously takes with no regard for anyone or anything. It wasn’t the first time and won’t be the last time I’ve lost, but it hurts.

Since my PH diagnosis 17 years ago, I’ve made many connections with those in the PH community. We often refer to these as “PHriends” or “PHamily” because they become an extension of our families.

Losing a PHriend stirs up various emotions. Often, I’ve thought about my mortality and experienced fear and anxiety, wondering when my time will end. Unfortunately, there’s currently no cure for PH. And since it is a progressive disease, I’ve already grieved more losses than I care to count. But somehow, the love these people bring into our lives is much more significant than the pain, making all the heartache worthwhile.

I was very close with Cathy. I knew her as Moma Hen. Since we had such a deep connection, her death created some intense emotions for me. I’m experiencing heartache, grief, and frustration that she didn’t live to see a PH cure. She fought through so much, it’s hard for me to accept that she didn’t make it through this.

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When I lose a close friend, I can’t help but question God and think about my own mortality. Death is a reality for us all, but it’s so much more tangible when living with and knowing others who live with a life-altering disease.

She and her family lived a few hours from my husband, Manny, and me once we relocated to San Diego. Years before, she flew to Texas and stayed in our home. We had a PHriend slumber party at another PH friend’s house. These were fun-filled memories that I’ll always cherish.

The weekend before she died, Manny and I went to visit her. I wasn’t prepared for what I walked in on. My chipper Moma Hen was sedated and lying in an intensive care unit bed with a gazillion IVs hooked to several pumps.

Unfortunately, I wasn’t aware that she would soon be donning a breathing tube. A few raised eyebrows were the only response I received that day. But I continued to sit at her bedside and hold her hand, reminding her of our fun times together.

After I spent the day with Cathy, her daughter was kind enough to keep me informed about her condition. Cathy had some good and some not-so-good moments over the following week, but when Manny handed me the phone on Sunday, I knew it wasn’t good news. It was Moma Hen’s daughter. When the hospital called her, she was on her way home to get more clothes. She wanted me to know that the hospital said anyone wishing to see her should come now.

We cried together on the phone. Manny told me to jump in the shower, and he cleaned the kitchen quickly. We made it to the hospital a little later. Her daughter, son-in-law, and youngest son were upstairs waiting for us near her room.

When I entered the room this time, Moma Hen opened her eyes and turned to look at me when I spoke to her. She could nod her head and would try to talk. Because she was wearing an oxygen mask, I reminded her that it was OK; there was no need to speak. I rubbed her hand again and told her how much I loved her.

Through the years, Cathy and I would send gifts for special occasions. She enjoyed making beaded jewelry and did a fantastic job at it, too. She’d loved the color pink. Moma Hen handmade me several jewelry pieces with teals and blue, my favorite color, and some periwinkle-colored for PH awareness.

But one of the last gifts she sent me was a keychain that reads, “I love you More. The end. I win.” This was only a few months before she died. It was meaningful because, for years, we would say, “I love you más.” Más in Spanish translates to more or much in English. We would then add “more más” to get the last word.

The keychain with the special message that Cathy gave Jen a few months before she died. (Courtesy of Jen Cueva)

But you see, Moma Hen has the last word; I’ll cherish this keychain along with many unique jewelry pieces she made me. Despite the ache in my heart after losing her, I adore the fun memories we shared that are close to my heart. Our PHriendship was worth it.

Manny and I attended her memorial service as our final farewell. We’re grateful that her family included us in this celebration. Her casket was surrounded and adorned with her favorite pink flowers.

I love you más, Moma Hen. I’ll see you on the other side of heaven. Cheers to all the memories, and I’ll keep PHighting for a cure.

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.