Jen Cueva - phaware® interview 509

Jen Cueva, a pulmonary hypertension patient of almost two decades, discusses her diagnosis, her advocacy work, and how she uses writing to support the pulmonary hypertension community.

My name is Jen Cueva. I from San Diego. I am a pulmonary hypertension patient of almost two decades. Throughout my journey with pulmonary hypertension, I have met some incredible healthcare providers, friends and family and loved ones and others in the pulmonary hypertension community.

Before I was diagnosed with pulmonary hypertension, I was a hospice nurse. But, unfortunately, when I was diagnosed for a variety of symptoms, no one had a clue about, and, obviously, I went to nursing school way back and I never heard of pulmonary hypertension. I think back when I was in school, there was maybe a sentence. It said the word pulmonary hypertension, but it never elaborated and it was never a focus or anything. So, of course, when I was diagnosed after having syncope episodes, fainting, I also was having fluid retention and I looked like, as my boss would say, the Michelin man. I was short of breath, had to crawl up my stairs every night to get to bed.

Thankfully, I was diagnosed pretty rapidly compared to many people. I only waited a few months. Definitely, when I was diagnosed, my world was flipped upside down as well as my families, because I worked as a hospice nurse and I was a mom, a wife, a sister. I was the actual caretaker in the family and within my friend group. Now, I'm the patient. So, I struggled mentally and emotionally quite a bit with trying to ask for help. I know so many people out there do, but for me, it's still not easy. Today, I try to remind myself how I feel when I'm able to help someone, so just think of that. Also sometimes you just can't do it without help.

For me, I thought this is not a "terminal diagnosis." It wasn't cancer like most people think or like end-stage anything. I thought originally like, "Oh, I'm going to just be in the hospital. They're going to fix me up. I'll get back home to my normal life." Unfortunately, that's not the case. But my hospice nurse experience has helped me emotionally and mentally and physically, because I have learned through the years how I educated families, loved ones, and my patients. I think it makes me be the person that's like, "I'm all about having to improve quality of life. Do what you're going to do. Enjoy life. Savor every moment. Create new memories," and things such as that.

I definitely went online to research, which is not always the best, especially if it's unaccredited, because I was told by one doctor who actually said, "No, you don't have pulmonary hypertension, but it's good because it's a death sentence.” I was like, "Okay, you're fired. On to the next doctor." I found an incredible knowledgeable doctor to confirm yes, I do have pulmonary hypertension. No, I am not going to be gone in three to five years.

There's no cure for this rare disease, but there are medications and treatments that can help the symptoms, and it did. I was grateful. I went home on oxygen, which I didn't want to wear out in public because I'm a young adult. I didn't want anyone to see me in my oxygen. I fought that oxygen for the longest time, but wearing it at night and then finding how much benefit I got of it in my body, I started to do it slowly. I've lost friends. I've gained so many other friends in the PH community and other areas, as well.

The doctor that I found, he was a pulmonary hypertension specialist, which I always suggest and recommend for new patients if they're seeing their local pulmonary or cardiologist. Those doctors may not have ever worked with a pulmonary hypertension patient. They may have one or two, so they tell you that, yeah, they're knowledgeable. I also had that happen to me. The medication they wanted to put me on at that time, the doctor had no clue. He gave me a pamphlet and sent me home to research on my own and say, "You can schedule an appointment next month and we can start you on this IV medication."

For me, as a nurse and an advocate already for my patients and everyone else, I had to advocate for myself and go to the next doctor. Sometimes that happens. I was very fortunate to find the PH specialist. They are well-trained, educated. They also know the newest treatments. They've treated thousands probably of pulmonary hypertension patients. Most of the time, their whole team's incredible, knowledgeable of the medications, what is needed. I always say it takes a village and my healthcare team is almost like a football team because without them I wouldn't be here today. We are the expert in our bodies, but we need that backup team as I say, the strong and knowledgeable healthcare team, such as a PH specialist. Not only just loved ones and family and friend support, we need it all.

When I was diagnosed in 2005, of course, I thought I would be fixed up and get back to my patients and everyone. I was told otherwise. I was not allowed to go back to work. I was told I needed to file for disability. At my age, I thought that was the end of the world. I love nursing and caring for others. What am I going to do? Also, financially, my income was part of a two income family. Now we're down to one, not to think about the added cost of all these hospital visits and tests and medical expenses. It took a toll on me mentally. Of course, that affected me physically. I did go into a dark area at times and I just stayed closed off from the world for a little bit, which was very unlike me because I'm very talkative.

I like to go and do things and help people enjoy life as we all should. I always thought I would get back to work in some type of capacity. I continue to have my nurse's license and do the upkeep with that, because I worked hard for that license. It was about a year off and on that I thought my life was over. I couldn't drive. That was another thing that took my independence away. I was on oxygen. I couldn't drive. It was hard for me to get to my daughter's events at school and things such as that. Sometimes, I missed those activities because I was in the hospital or I was sick. I couldn't be around the kids at school. That took a toll on me mentally as well, because of course I thought she went without, and it was because of my sickness, my diagnosis of pulmonary hypertension. So I felt guilty about that, as well.

About a year later, I went online. I had heard about Pulmonary Hypertension Association from my PH team. I started volunteering with them. I was doing a lot of advocacy work. I would do writing if they needed anything such as that, share my experience, talk to other patients that were maybe new or isolated and felt alone and overwhelmed, of course, at diagnosis. I started to have a little bit more hope and thought, "Oh, well, I am doing something." At that time, I had limited energy and oxygen, because I was still on oxygen full time.

After a while of that, I found Pulmonary Hypertension News, which is a part of BioNews, a company that focuses on 50 plus rare diseases. At Pulmonary Hypertension News, we had forums for patients and caregivers that I started going into. They reached out to me and said, "You're on here so much supporting people. We want to hire you. We want to give you a few hours a week. You can moderate the forums. You're in there nonstop anyway and supporting people." A few months after that, I had the opportunity to write for them, a column. I share my experience with pulmonary hypertension, the ups and the downs. At first I was determined I'm only going to share things that are fun and hopeful and not to bring people down, but then I'm like, "You know what? I'm not going to do that. That's a disservice to the PH community, because they really need to know the trials and tribulations and things we have to go through to know that, 'Oh, I'm not the only one going through this.'"

In the forums and in my writing, my column at Worth the PHight, for me, that was my way of nursing and giving back. I did a book, a collaboration of rare disease stories for Rare Disease Day 2024, that's called Kaleidoscope. The proceeds to that book went to a nonprofit that focuses on rare disease.

I have worked on a new book, Positively Rare, that is a collection of 22 other featured writers and myself. We each wrote a chapter on our rare disease and how the rare disease has impacted our lives, because we all know no matter what rare disease you have, I feel like the people in the rare disease communities just come together. We just want to be this huge community of support, and if we can help someone else, it's all worth it.

That book was released in November for PH Awareness month in 2024. I share a little bit of my experiences with pulmonary hypertension, but my main focus is my transition from a nurse to a patient and how that evolved through the years and some of the struggles and challenges that I face. Tou can go to Amazon and find that book, Positively Rare, as well as Kaleidoscope, the stories of the rare disease patients.

At first, when I started writing, I thought that I would never have enough information to share. I'm like, "I'm not that creative. I just write." I journaled it a lot as a kid, so I have always written in some form. For me, if there's a certain challenge or triumph, I go through, I am like, "Oh, maybe I should write about it" so other people in the PH community would understand. And if it happens to them, they can relate and say, "Oh, I'm not the only person that's going through this. Oh, I'm not crazy as some people have told me." They will say, "Oh, you read my mind. I can agree with everything you just wrote here. It's so crazy that you understand what I'm dealing with." For me, if I can be that voice, that validation, to make sure that others in the community are heard, at the end of the day, that's all I'm going to do.

Through my diagnosis, I was journaling every day about my symptoms and things for my doctors to keep up with, so I found writing. I didn't have time to do that when I was working and being a mom and working full time. Writing for me has been therapeutic, but I've also found that I was much stronger than I ever thought possible, because some days I was like, "I'm not going to get through this." So it's not the end of the world. I met people, they do crafts and arts, and they sell them online and to other people. Some do jewelry and different beadwork and things focused around pulmonary hypertension. That is therapeutic for them. They had never had the time to do that before, but they're like, "Oh, I'm crafty." Or they sew or cook more. I knew one lady that started her own business. She's like, "This is what I was born to do."

So despite the pulmonary hypertension diagnosis thinking that life is over, there's so much more out there. No, I can't run. I can't do exercises I would love. I still use a wheelchair for distances, but I weaned myself off a full-time oxygen. I use it at night and as needed when I'm up walking around. I'm trying to get past that point, but we have to keep working. There's just so many little things like that. I've had more time to spend with my daughter as she was growing up. Now, she's a young adult. We have time to go on trips sometimes overnight. We can do that. Before, we couldn't. It's just mom and daughter time and that bonding time.

So when you're diagnosed, I always say, "You need to allow yourself to feel all the emotions that you have. Just don't let them stick with you." One of my late PH friends would say, "You can sit on the pity pot, but make sure you get up and flush it and move along." That's stuck in my head. I have days where I think, "Oh, it's not a good day." I may be on the couch all day and there's plans that I had, but I know my body is telling me to listen to my body more. Unfortunately, I learned the hard way because I push and push until it just gives out. When those times happen, I can write more. I can email, check on others who have reached out and see if I can help them as they learn about this new diagnosis, or maybe they have had the diagnosis and just now decided to try to find others and learn more about it and how they can improve their symptoms and what things they can do versus, "Oh, it's the end of the world." That's my purpose. That's why I do it. As my husband says, "You can't save the world," but I can try. That's why I do what I do.

My name is Jen Cueva, and I'm aware that I'm rare.

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