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The importance of providing patient support in the face of a life-threatening illness

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from Sara Wyen, a survivor raising awareness about the devastating effects of blood clots.

As a long-distance runner, I was accustomed to pain of some sort, primarily in my knee due to a lingering injury that often caused serious pain. So, when I wrapped up a run one Saturday with excruciating left knee pain, I really didn't think anything of it. But the pain persisted throughout the weekend and was soon accompanied by a stabbing pain in my left side and shortness of breath.

I found out very quickly I most definitely wasn’t alone, but I may have never known without encouragement from my physician

At the urging of my primary care physician, I went to the emergency room and was admitted to the hospital two days later. I had a blood clot in my leg, known as deep vein thrombosis (DVT), and a blood clot in my lung, known as pulmonary embolism (PE). Having never been hospitalized in my life, I was scared, weak, exhausted and in more pain than I had ever experienced. I was put on IV blood thinners and kept in the intensive care unit for several days as doctors monitored my volatile condition due to the blood clot passing dangerously through my heart. I wondered what was happening and whether I would survive.

In the coming days, I was moved to the cardiac unit (the youngest on the floor at just 29 years old) and due to the persistence of one doctor who is now my hematologist, I was diagnosed with antiphospholipid antibody syndrome (APS). I soon learned that APS is an autoimmune condition in which the body mistakenly produces antibodies against itself that contribute to abnormal blood clotting. APS, combined with my use of estrogen-based oral contraceptives, was to blame for my blood clots.

The coming weeks and months of my recovery were the most difficult I've ever faced in my life. I could no longer do the things I loved to do, like run, or the things I had to do, like work, and I needed to use an oxygen tank and wheelchair. My strength was depleted, my leg and lungs hurt, and I was grappling with a diagnosis of a lifelong disorder that requires continuous care and medication. I was consumed with unwavering anxiety and depression.

The most frustrating part was that to everyone on the outside, I looked and seemed fine, but I was fighting the biggest battle of my life. I felt betrayed by my body, which I had taken great strides to take care of with healthy eating and exercise. I felt completely isolated by what was happening to me, and doctor support became crucial during the extensive recovery period.

The hematologist who assumed my care was ever-patient and supportive of what I was going through. He answered my questions as many times as I needed, and assured me that while I was extremely ill, we would get through it together. He listened to me and recognized early on in my recovery that I wasn't emotionally processing what had happened to me, therefore becoming depressed and anxious. He supplied me with resources and, by listening, also validated my pain and fear at facing a lifelong and potentially life-threatening illness that I had known nothing about.

Throughout my recovery, I began to see that patient support for survivors of DVT and PE was lacking, and finding a doctor who took an active role in my care was crucial to moving forward from my experience. After my doctor assured me I wasn't alone, I reached reach out to online support groups and patient advocacy websites to further relate to other individuals who had been through a similar situation. I found out very quickly I most definitely wasn’t alone, but I may have never known without encouragement from my physician.

In seeing how others who survived a blood clot were also struggling, I became committed to helping people through the tough parts that I had already gotten through. My passion for making a difference in the lives of others as my doctor had done for me became the driving force that helped me get through every single one of my unimaginable days of pain, fear and anxiety.

I encourage anyone who is recovering from a blood clot to seek out a doctor who supports you in your care, answers your questions, validates and addresses your concerns and helps you make connections to foster healing in your own life.

Sara Wyen is a founder and writer at BloodClotRecovery.net, a blog dedicated to helping patients through the recovery process from deep vein thrombosis (DVT) and pulmonary embolism (PE). She is also the manager of communications and health marketing at the National Blood Clot Alliance, a voluntary advocacy health organization dedicated to advancing the prevention, early diagnosis and successful treatment of life-threatening blood clots.

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