By Arianne Rohmann
My active thirty-year-old husband was diagnosed with pulmonary hypertension (PH) and bi-lateral blood clots after experiencing unexplained symptoms for months… Five months later I was a 29-year-old widow raising a four- and seven-year-old on my own. (This post is the first in a three-part series by this author)
It was hot. I was just walking out of the vet’s office when I received a phone call from my husband, who was in Barbados visiting family at the time. He sounded nervous, but confused. “Aunt Rach found something. I have blood clots in both of my lungs and something called ‘pulmonary hypertension.’ I’ve also been put on oxygen.” I didn’t understand. I didn’t know what it was or how serious it would be, but I knew it didn’t sound good. This was my first introduction to the disease that would ultimately take my husband from me and our two children.
It was a week into January when my husband, Robert, headed to Barbados to visit his mom’s family. He hoped to feel well enough to surf. Robert had been experiencing symptoms of shortness of breath, light-headedness, chest pain, and feeling drained. Honestly, these symptoms had been going on for a while – he had even been checked for them — but around November 2015 they became impossible to push through. While in Barbados, he decided to go out surfing with a buddy at one of his all-time favorite surfing spots – Soup Bowl – a location known internationally by people who love connecting with the waves the way that Robert did. The much-anticipated trip would not last long, though.
“He paddled out and the next thing I see is him paddling in.”
“He looked like a ghost. I called his name and asked over and over if he was ok and he looked right through me as he walked to his car.”
These statements came to me later from fellow surfer friends. I cringe thinking about him paddling back in from the ocean, with this deadly disease lurking under the surface. But I also thank God that Robert didn’t die on that day. It makes me smile to know that Robert’s last wave (well, saltwater submersion) was at his favorite wave spot. Robert went straight from the beach to his aunt’s workplace, a local medical center. There they found the culprit(s) that I soon would come to learn of as silent killers – pulmonary emboli, or blood clots in the lungs, and pulmonary hypertension.
Under doctor’s orders, Robert couldn’t fly back to Florida until his oxygen levels were above a certain level. Financial limitations, motherly duties and other complications kept me from being able to rush to my best friend’s side right away. So, I waited and worried, heartbroken. After two long weeks, I finally was able to see him. From the moment I laid eyes on him, I was in shock. My otherwise perfectly healthy, active husband was panting. He could barely take a few steps without his heart rate accelerating and oxygen levels declining. Over the next couple of weeks, we visited with cardiologists and pulmonologists. We were ultimately recommended to a specialist clinic, where we met with a pulmonologist specialist. As she was answering questions from his family, I remember the words that have stuck with me since – “It’s not like he’s dying.” That was his first visit. At the time, Robert’s case looked like commonplace pulmonary embolism – a disease which affects hundreds of thousands of people in the U.S. each year. We thought that once he was treated with blood thinners, the pulmonary hypertension would disappear with the blood clots.
1/24 6:10pm – shaky, weak, HR 118, light headed, tunnel vision. happening while eating
1/25 – tunnel vision morning and evening, oxygen down to 75 then back to 95. Blood Pressure 104/75
1/26 10am – 105/77 pulse 83 O2 at rest (lying in bed)
Before he left for Barbados, Robert celebrated his thirtieth birthday. He was still working everyday as a fishing charter captain. Looking back, he had been suffering for weeks, months, maybe even years. It was never caught by doctors. We began to live our “normal” and move on with our lives.
Robert was a true waterman. As a surfing professional from a young age, his childhood was spent growing up in the heart of the east coast of Florida. After we met, Robert decided to take a break from the surf industry and follow his passion for guided fishing and hunting trips. Precious years later, as we were building our lives together, his dream came true in the form of AVID Charters. Robert put his heart and soul into his work. He built a name for himself and in the fishing world, with me by his side. I remember in December the year before he died we were looking toward the future together. “We did it,” he said. “We are finally going to come out on top. This is our year.”
Robert had been involved in a TV show that had taken interest in him. He was also being courted by corporate brands that were interested in working with us. We were even in discussions about our own lifestyle mini-series. But when he returned from his trip, although we didn’t yet understand, everything had changed.
The kids were watching TV in the living room one day when I received a text from Robert that he needed me in the bedroom. I came to the end of the bed as he was gradually inching down. I had my hands reached out ready to help him up. I was watching the readings on his heart rate and oxygen. Instead of bracing to stand, he put his head against my chest as I hugged him and he just said “thank you”. He didn’t have to say anything else. I’ll never forget how good that felt. When we are caught up in the busyness and stress of the surroundings, we can forget about what is important. In that moment, I had a flash of my life in an instant. He asked me if he thought he was going to die. I responded with a look as if I thought he was crazy and shook my head as he giggled. We honestly didn’t think he would.
But the days grew harder. Robert grew tired, annoyed and frustrated with being so limited. He was irritated by the long tubes leading from a huge machine in the living room to his nostrils in our bed. There were good days and bad. Some days he could get up and move around throughout our house. Other days he had to move inch by inch to get to the edge of the bed. Sometimes I would have to shower with him to wash his hair or literally brush his teeth for him. And then there were days he could make it outside to do minor work in our aquaponic garden.
A Chronic Condition
It was the end of February or early March when we learned that the pulmonary hypertension might be more serious than we initially thought. After a couple of particularly bad days, his doctor at the specialist clinic suggested we go to a local pulmonologist. I reached out to a friend who worked at the office and was able to get an appointment right away. The information we received that day gave us a completely new outlook on Robert’s life. This was the critical change in our understanding. He went through the routine check endured during every visit to a new doctor (blood work, CT, ultrasound, ventilation-perfusion (VQ) scan), but this doctor saw something much more serious. He looked at the elevated white blood cell counts and all of the factors and knew that Robert was really, really sick. He explained chronic thromboembolic pulmonary hypertension (CTEPH) to us in detail. I was hanging on every word. After believing and understanding for a month and half that his case was temporary and that Robert would get better, I couldn’t believe that this could be long term. The doctor described the surgery that could potentially normalize the blood pressure in his lungs, PTE (pulmonary thromboendarterectomy). When we left, Robert quickly dismissed these new findings. He was upset, to say the least. I was upset, too, but thought that this new information made sense and explained his struggles to get well.
The next two months we would be in and out of the specialist clinic and emergency room. Day in and day out I watched him suffer. Looking back, our future was still so unknown. Though we knew it was more serious than we’d initially believed, it was still so difficult to imagine losing my young, active and strong husband to a disease that we’d only learned of a few months before. But the coming weeks would be beyond our control and ultimately end in the loss of my husband and best friend.
Arianne is an active supporter of PHA who uses her platform as a social media influencer to encourage conversations about pulmonary hypertension (PH) and help those who may be grieving the loss of someone due to this disease. She is sharing her story as part of a three-part series featured on PHA’s The Right Heart blog to raise awareness for chronic thromboembolic pulmonary hypertension, a type of PH caused by old blood clots in the lungs. Follow her on Instagram at @ariannerohmann and connect with this blog series by subscribing to PHA News.