By Vectra Ambassador Maria Marino
When I was first diagnosed with rheumatoid arthritis (RA) in 2009, there weren’t many places to find information or support online. I discovered one online RA group and became an active participant. I met a ton of people in that group and became fast friends with the active members. I also joined RA Chicks, which focuses a lot on self-advocacy for patients with RA, and I made even more friends through that forum.
One of my best online RA friends was a woman named Kelly. She was one of the kindest, sweetest women I knew and always generous in sharing her own experiences or offering encouragement. We talked or messaged every day. I’ll never forget one night when our group was online together, and Kelly began sharing symptoms she was experiencing currently. She wasn’t feeling well. As she described her symptoms, I began to worry that she was having a heart attack and urged her to go to the emergency room.
Kelly didn’t go to the hospital that night because she believed her pain was related to her RA, having researched a condition called costochondritis, which is inflammation of cartilage in the chest area that can cause pain similar to that of a heart attack. She scheduled an appointment with her doctor, who also attributed her pain to costochondritis. Sadly, just a few days later, Kelly experienced a stroke. She was rushed to the hospital where it was discovered that she had a nodule on her heart that had created an issue with a major vessel into her heart. Ten years later, I am still heartbroken that we lost Kelly that night in surgery.
Kelly’s experience shook our whole group to the core and many of us, myself included, added a cardiologist to our care team right away. Until Kelly had her experience, we hadn’t been aware of the increased cardiovascular risks that can occur with RA. Fortunately, my rheumatologist was 100 percent behind my decision to work with a cardiologist and referred me to a good one that she knew.
Now I see my cardiologist every year. She runs a range of tests, including an echocardiogram, a stress test, some imaging tests and others, to see how I am doing and if there have been any changes or causes for concern.
As a Vectra® Ambassador, I was thrilled when the Vectra Cardiovascular Risk Result was made available as an addition to the Vectra report. This metric is so helpful for RA patients and their doctors to assess their current risk for a heart attack or stroke in the next three years and encourages patients to create a management plan with their doctor. It also helps to highlight to patients the critical link between RA inflammation and heart health. Having this personalized result provides patients with another way to advocate for themselves, something that’s critical to all of us and especially important in my life.
Those of us with RA can be so accustomed to pain, that we sometimes attribute any pain we feel to our RA. A few years ago, I hurt my leg and felt pain from the injury for about six months—much longer than was normal. Without considering other possibilities, I assumed the pain was related to my RA and even went to the hospital for a steroid shot.
I didn’t know it then, but the truth was I had a blood clot, which moved into my lungs causing chest pain. I rushed to the ER fearing a heart attack. After some testing, including the D-dimer test, which I requested, it was clear I wasn’t having a heart attack. The blood clot was discovered and I received treatment.
These two experiences were influential in my health care journey and convinced me of the importance of being an informed patient and in advocating for myself in medical settings. I continually encourage other RA patients to do the same for themselves and have even extended my advocacy further as I’ve become involved with advocacy at the policy level through the Arthritis Foundation.
Vectra Cardiovascular Risk offers one more tool to help patients advocate for themselves and be informed. I’d love for you to share on the Vectra Facebook page how you advocate for yourself as a patient, and how Vectra and Vectra Cardiovascular Risk have helped you to feel more informed about your RA.