Nathan: Determination and Perseverance

An Active Spirit

Nathan was always active. In high school, he ran cross-country and went on to join the military shortly after graduating. He noticed that sometimes he was winded during basic training, but he didn’t see it as much of a problem. As an adult, he was regularly tearing it up on the dance floor at the clubs on the weekends. He led a busy life, often burning the candle at both ends, and he liked it that way. Nathan was never one to sit still, but his life was about to change.

When he was 35 years old, Nathan and his then-fiancée, Nayda, went on a trip to Puerto Rico to visit her family. A few days into the trip, Nathan fell extremely ill. He could barely stand up straight and couldn’t walk more than a few steps without feeling short of breath. In hindsight, he could see how he had been bloated and retained fluid but at the time had ignored it.   

He went to the emergency room but it was difficult for doctors to figure out what was wrong; the language barrier didn’t help. Nathan and Nayda flew back to the States to find medical care. The plane landed, and Nathan and his fiancée were both exhausted. Nathan just wanted to go home, but Nayda urged him to go straight to the emergency room, where he was admitted to the hospital and underwent many days of testing. He was then referred to a lung specialist at a medical facility, where he underwent even more extensive testing. After a right heart catheterization, Nathan was diagnosed with pulmonary arterial hypertension (PAH).

“I was confused and scared,” Nathan said. “I thought I was going to die.”

Shocking News

Nathan and Nayda were married three days before the appointment where they were told that his status was extremely high risk. He was scared about the future.

“When the doctor told us that news, I felt like our world was coming to an end,” Nathan recalls.

As someone who had always been active, Nathan felt shocked and confused. He was scared for what his future would bring. He could no longer work, so he quit his job and went on disability. The decision to quit his job was extremely difficult for Nathan, as he had been working ever since he was 16. The pain and burden of dealing with his disease caused him to lose his will to live for a time.

But Nathan didn’t give up. He and his wife spent countless hours educating themselves on everything related to PAH. They researched various treatment methods and ways to manage symptoms as they looked desperately for something that would help him feel better. Nathan and his wife moved in with his parents at his childhood home for several months as they navigated doctor’s appointments.

Throughout that time, Nathan also learned how to talk to doctors about his condition and ask questions about his risk status, goals, and treatment plan, which were his first few steps to becoming his own advocate. Nathan also started PAH treatment, which made an immediate difference in his PAH symptoms. 

Feeling Like He Could Do Better

For the first time in a while, Nathan had hope. He chose to live his life to the fullest and to not give up.

Over the next nine years, Nathan dealt with complications from medication interactions and errors in medical procedures that were performed poorly. He also learned that some foods didn’t interact well with certain medications. While his initial treatment plan had helped, he couldn’t help but feel like more was possible. Nathan and his wife made a point of educating themselves and researching every medication. He made sure to discuss treatment options with his doctor when he wasn’t meeting his goals. He wanted to do everything he could to get better.

Nathan and his doctor decided to add another oral medication to his treatment plan, which Nathan felt was the right choice for him.

Never Giving Up

Throughout his journey, Nathan has learned that despite his condition, he doesn’t have to stop doing some of the activities he enjoys. While he no longer spends time on the dance floor, he has found other ways to enjoy life, like going out to nice dinners with his wife, traveling, and going to the beach. He believes that patients with PAH should look for activities or hobbies that give them an outlet. He experienced firsthand how easy it is to focus on what you can’t do and let worrying about PAH take over your life. In Nathan’s experience, finding an activity that can help you smile again can also remind us that we have a lot to give to the world.

Knowing this was no way to live, Thekla resolved to change it.

Thekla realized living with a rare disease meant she was going to need to advocate for herself. She couldn’t just sit back and wait. She needed to begin setting goals for herself and learn about the disease—both how to live with it and how to treat it. She needed to know what was going on in her body and how she could fight it. She wanted to know everything she could about the treatment options.

Nathan also investigated new careers that would work well for him living with PAH. He now sells insurance and is working toward building his own agency, which makes him smile. Going back to work was a life-changing moment for him.

Nathan joined support groups where he talks to other patients living with PAH and continued doing his own research on his condition. His wife has also been a huge support system in his life.

“I am grateful to have the positive emotional support of my wife, who is not only my caregiver, but my cheerleader, too,” he says.  

He has also learned that self-advocating and self-education are the keys to managing his condition properly so everyone—patient, caregiver, and doctors—can openly talk about their goals and how to meet them. Staying informed and educated gives him a better understanding of his condition and treatment plan, which allows him to have more productive conversations with his doctors. 

Today, Nathan chooses to continue living his life to the fullest and spending time with his wife as much as he can.

“The biggest thing I have learned from my journey with PAH is that just because I have a chronic condition doesn’t mean I have to stop enjoying life,” he says. “Even though I have had to make lifestyle changes, I feel that life is still worth enjoying.”

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