Joyce Sandberg, 81, of Port St. Lucie, Florida, noticed shortness of breath nine years ago while biking and was diagnosed with chronic obstructive pulmonary disease. A few years later, she developed blot clots and chronic thromboembolic pulmonary hypertension (CTEPH). But she doesn’t let her conditions stop her from enjoying life with husband, Toby, 77. They still take cruises together and attend classic car shows.
By Joyce Sandberg
Before my diagnosis, I was an active senior citizen happily living my life in Fort Lauderdale. As part of my lifestyle, I bought a tricycle and biked for an hour every day. Each time I biked, I found myself short of breath. I assumed it was caused by a 2008 surgery to remove a non-malignant spot from my lungs.
In 2014, my husband and I moved to Port St. Lucie, and I began riding my tricycle again. My shortness of breath returned. Each time I biked, it became more difficult to catch my breath.
I decided to see a pulmonologist. After a few tests, the pulmonologist concluded that I had a mild case of chronic obstructive pulmonary disease (COPD). I was a former smoker, so the diagnosis made sense. I was prescribed albuterol to use before my bike rides or as needed.
I continued to ride my tricycle and take my albuterol, but the shortness of breath remained.
Blood clot discovery
In 2016, my husband and I spent a night at the Hard Rock Hotel in Fort Lauderdale. When I got into bed, I couldn’t lie down and catch my breath. I didn’t want to wake my husband because he would want to take me to the emergency room. I sat in a chair all night and tried to get a couple hours of sleep. The next morning, I told my husband what happened, and we returned home.
As soon as I was home, I called my doctor. No appointments were available until the next day. Looking back, I should have gone straight to the ER.
By the time I made it to my doctor’s office, both my ankles were swollen. When my doctor saw my ankles, he told me my heart was in jeopardy and sent me to the ER across the street.
In the ER, my oxygen level plummeted to 70, and I was put on supplemental oxygen. The doctors discovered a large blood clot in my lungs. I was put on heparin and connected to a heart monitor.
I was in the hospital for four days, and I was lucky to have survived. I came home with 24/7 oxygen and was put on Eliquis for life. The doctors didn’t know where the blood clots originated and wanted to prevent more from forming.
Three months later and under the care of a cardiologist and pulmonologist, I wasn’t improving. I informed my pulmonologist that I couldn’t walk around without my oxygen saturation level dropping considerably. He suggested I go to Walmart and push a cart around the store, taking rests in between. That was supposed to help.
I told him I didn’t agree with his suggestion, and I believed something else was going on. He told me there was a small chance my symptoms could be a sign of pulmonary hypertension (PH). I had never heard of PH and asked for a referral for a second opinion. My pulmonologist referred me to the Cleveland in Weston, Florida, which has a PH specialist on staff.
Six months after my ER episode, I met with Jinesh Mehta, M.D., who asked if I’d had a right heart catheterization or a ventilation/perfusion (V/Q) scan. He suspected that I had PH and ordered the two tests. After both tests, I was officially diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH).
Dr. Mehta informed me that I wasn’t a good candidate for surgery to remove my clots, based on my symptoms and medical history. Instead, he said I would have to take medicine for the rest of my life. I was prescribed Adempas, the only approved CTEPH medication at the time, along with Eliquis.
In June 2022, I had emergency gallbladder removal surgery. When Dr. Mehta visited me after my surgery, he said that surgery told him more about my heart than any test could. Although my heart was under major stress during surgery, I was able to make it through and recover.
Adapting and moving forward
I see Dr. Mehta every six months. My echocardiograms continue to be status quo, which is a good sign that I’m stable. Since my diagnosis, I have taken Adempas, Eliquis and Spirivia to manage my CTEPH. I’m also on oxygen 24/7. In 2020, I began taking Uptravi.
I use an electric power chair at home because walking makes my oxygen saturation level fall. When I go grocery shopping, I take small oxygen cannisters with me because they’re not too heavy. I also ask for help getting an electric cart.
My husband and I still go on cruises and book accessible cabins to accommodate my scooter and portable oxygen machine. I bring along extra batteries, a desk charger and plug-in charger to keep the rotation going. My portable oxygen is quite heavy, but I place it on my scooter at my feet.
This disease requires ingenuity. I adapt well to my circumstances. I have a positive frame of mind and feel fortunate for my view on life. The alternative is worse.
Each time I visit Dr. Mehta, almost two hours from where I live, my husband and I make the most of it. We stay at the Hard Rock Hotel.
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