In Memory of a Special PHriend, With Gratitude

Jen Cueva avatar

by Jen Cueva |

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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.

death of a friend | Pulmonary Hypertension News | a photo of a keychain with a round disc reading, in cursive, "I love you More. The end. I win."

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.

Comments

Elaine Jones avatar

Elaine Jones

I'm new to this disease was diagnosed in October 2021. From everything I've read, seen heard and been told it seems like it's just a death sentence. So I wonder why are we bothering going to the doctor are they doing anything, is there any innovations or just basically sit around and wait until your number comes up to die? Are you kidding me right now!

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Jen Cueva avatar

Jen Cueva

Hi Elaine, I'm sorry that you were recently diagnosed with PH. It's not a death sentence. There's currently no cure, but the symptoms can be treated when you have a PH specialist who finds the best treatment plan for you. I was diagnosed 17 years ago and doing reasonably well on all oral treatments.

Jeannie also shared her story and some examples of some in our long-term PHriend group.

I'm one of the forum moderators for the PH news forums. We would love to have you join us. You can read about others' experiences with PH and communicate with many who have been diagnosed for years with various treatments. I suggest you find a specialized PH doctor who is knowledgeable and can get you on the best medications. It's overwhelming; I get it- It helps to know others have been in your shoes.

PH News Forums

Thanks for reading, and I'm sorry this was probably not the best time for you to read about the loss of my dear PHriend. I'm sending you big hugs and look forward to seeing you in the forums soon.

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Sally Hoffman avatar

Sally Hoffman

Hugs to you, my friend.

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Jen Cueva avatar

Jen Cueva

Thanks so much for the hugs, my PHriend. I appreciate you taking the time to read my column. Hugs are coming back your way. Take care, Sally.

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Jeannie F DiMauro avatar

Jeannie F DiMauro

Cathy was truly one in a million...with a heart made of gold. She absolutely adored you, Jen, and was so happy when you moved back to California. I miss all her little messages, her funny stories, her pictures & tales of Ceci, her misadventures AND her adventures...like carrying that 3-4 ft statue of an angel on her lap in her wheelchair... getting on and off a bus WITH the statue... I do not know how she did it... Cathy was persistent! I never thought I'd see Cathy pass... she always seemed to fight her way back from a medical crisis... and I thought this time would be no different. Anyhow, suffice to say Cathy is loved by many and will be missed by scores of people... I will never forget her kindness and good humor. I bet she's found Ellen and they are probably laughing together & cooking up some mischief right now! Hope you are doing okay... call me if you feel like talking.

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Jen Cueva avatar

Jen Cueva

You're exactly right, Jeannie, you know Moma Hen and Ellen and cutting up. She certainly holds a special place in my heart, too. I know she loved you much, and you loved her dearly. We had so much fun that time at our sleepover party. I'll never forget the pink room we shared and that pink toilet. Cathy would have tried getting that on her wheelie if she could drive it home, hehe.

She's undoubtedly missed and loved by so many. Thanks for sharing those memories with us. A pic of her carrying that giant angel statue was part of the pics at her service. So many times, I could laugh when I saw that.

Take care, Princess. Same to you, I'm here if you ever want to chit chat.

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MamaBear avatar

MamaBear

I'm so sorry for your loss, Jen.

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Jen Cueva avatar

Jen Cueva

Thank you so much for the love, Mama Bear. I hope you are doing well.

I appreciate you taking the time to read this column and sending me your well wishes. Take care.

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Jeannie F DiMauro avatar

Jeannie F DiMauro

Elaine... PH is definitely not an automatic death sentence... there are many of us in this group who have been diagnosed more than twenty years ago...and at least one woman who was born with PH and is now in her mid-thirties living a rather active life. There are several groups catering to PH patients with similar diagnoses... some of us have more serious variations of PH and others... like me... have significantly easier variations. If you will PM me on Messenger I can point you to groups where you could get some answers, compare stories, and perhaps feel less hopeless about your condition. Good luck.

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Jen Cueva avatar

Jen Cueva

Thank you Jeannie, for responding to Elaine and sharing some examples of those within our PHriend group. You're the best!

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Dorothy Irwin-Browning avatar

Dorothy Irwin-Browning

Jen, while I did not know Mama Hen I know that you are a very generous person just from hearing here what you have involved yourself in and how much you care about loosing another person. Your own medical condition seems quite complex so for you to have much left to give to others is remarkable. I keep learning from people like you how to make the most of life as it is. Mama Hen is in a better place but there will always be others who need you. I hope we can all be thoughtful of what life has offered to others on these forums. Sometimes that will mean to not share too much since each person has their own load that can get heavy. My best to you and thank you for being there for us. Doti

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Jen Cueva avatar

Jen Cueva

Thank you for such heartfelt words; it means so much. I'm grateful to help others and do what I can. I do take breaks for myself, no worries.

I'm grateful that the forums offered much hope and support. It's because of our outstanding members, like yourself. Please share away; we all have a little help to offer even on our worst days, my PHriend.

Thanks for taking the time to read this piece and respond with such thoughtfulness. Take care- all the best to you.

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Debbie Moore avatar

Debbie Moore

Tears, Jen. Just tears! It is so hard when we grieve the loss of a loved one, but for that person to have our disease it brings it close to home for all of us. She sounded like a delightful person to be around. I wish I had known her.

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Jen Cueva avatar

Jen Cueva

Thank you so much, Debbie, for such thoughtful and kind words. Moma Hen was an extraordinary woman; we had known each other for so long. It hit harder than some, but it's never easy. AS you mention, it brings reality home.

I hope you're resting this weekend and not working too hard. Take care of yourself.

I appreciate you for taking the time to read my column and comment.

Hugs and prayers,
Jen

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