Deep Vein Thrombosis: A Survivor’s Story
I awoke around 3 a.m. that day with a sensation in my chest area that I will never forget. It was not until I sat up that I noticed my heart was racing so fast it was all I could hear, and I found it hard to breathe. When I stood to walk, I felt lightheaded. I worked hard for those 10 steps, and when I sat back down on my bed my heart was racing even faster. I laid down wondering: What was happening? Should I call 911?
My partner was away at hunting camp. My two children were asleep. I told myself to just fall back to sleep and see how I felt in a few hours. I awoke hours later and the sensations were not at a climax as they had been a few hours earlier, but breathing was still difficult. A few more hours passed, and I noticed breathing kept getting harder and harder. I called my primary doctor’s office and spoke to the nurse. Her triage questions saved my life. When I heard her say: “Amy you might have a blood clot. Please go to the ER for evolution,” my reply was “A blood clot? I’m three weeks out from surgery? She said: “Blood clots can happen three weeks out.”
Today, I am a survivor of a massive pulmonary embolism and multiple deep vein thrombosis, or blood clots, in both my legs. Three weeks prior to the blood clots forming I had a micro-fracture procedure on my left knee.
Back to that night: When we arrived at the ER at Central Vermont Medical Center, it took everything in me to breathe. A nurse took my pulse. I was hooked up to an EKG machine; oxygen count was taken as well as other vital signs. I was never so relieved then when I received oxygen. Then, my doctor came in. I will never forget the look in his eyes when he placed his arms on the railing and gave me the news: “A large saddle back pulmonary embolism was discovered and you will need to be brought to Fletcher Allen Health Care and admitted into their intensive care unit. I have spoken to Dr. Gilman Allen, and we have worked out the direction of your care.”
My question: “Am I going to die?“ His answer: “This is pretty serious, and we have begun the treatment and we need to wait.” In a split second, nothing else mattered except my son, Devin, and my daughter, Emilie. I asked Devin if I had been a good mom. His said, “Yes, Mom.”
I was admitted to the ICU at Fletcher Allen where an ultra sound discovered five clots in my left leg and a clot in my right leg. I was given the news that I would need surgery to have an IVC filter placed to prevent the clots in my legs from moving into my lungs. Testing showed damage to the right side of my heart. My mother and Devin never left my side during the most critical time: 24 hours of waiting to see if the drugs would break up the clots with the help of my own body.
I remained in the ICU for three days before moving to the cardiovascular wing to be monitored. I would remain there for six days before leaving and stepping into the next phase of my healing.
Dr. Mary Cushman and the wonderful support staff in Hematology monitored me for an additional six months. When I returned home, with my nurse Karen Libby’s assistance, I had two weeks of giving myself Lovenox injections and daily trips to Central Vermont Medical Center to monitor my INR level. I would come off Lovenox after two weeks and transition over to Warfarin, which I would remain on for six months.
I had to monitor what I ate and drank during this time and continue to make daily INR trips and dosage changes when needed. I was prescribed a compression stocking to wear daily on my left calf, which I continue to this day to wear. During this time, I had my IVC filter removed after my persistence with Dr. Cushman that I wanted this physical reminder out of my body. The removal went well and believe me I had an enormous amount of worry since my main artery in my neck needed to be cut. I asked to see the filter I needed closure. This little device helped save my life.
My care team discovered that I had post thrombotic syndrome in my left leg as well as lymphedema. Dr. Cushman’s team worked to identify these issues and referred me to lymphedema therapist. My therapist showed me how to massage my leg and wrap when I noticed the size of my leg increasing because of fluid. I was shown how to manage a condition I would have for the remainder of my life. During this time, Dr. Susan Lakoski monitored the cardiovascular aspect of my recovery and discussed weight loss and an exercise program. I struggled with this then and today. It was not the right time for me to incorporate the changes into my life. I feared my heart racing; I feared the change in my breath. Until this psychological barrier is shattered into a million pieces, my work with Susan waits.
My primary doctor also monitored my progress. He has reminded me often “Amy, your work is to trust your body again.”
I would learn recovery from a DVT or PE has physical and emotional pieces to it. I tell people that the physical recovery is easy and the most challenging part has been the emotional. I had never heard of a panic attack until I began experiencing panic attacks which last 45 minutes to an hour in duration. I know depression and anxiety on a level I could never have imagined. My doctor and I worked for a good year with medications to aid in the recovery. We realized I would need to see a psychiatrist. I was diagnosed with Post Traumatic Stress Disorder. My therapist suggested I begin seeing a therapist who works with patients having gone through traumatic experience with the use of yoga. This was the missing piece to the puzzle of my recovery. My therapist showed me various breathing techniques to use when I feel anxiety, or when my breath wants to take off on me. Ocean breathing is my favorite because it allows me to take back my power and feel a sense of control. I conquered my fear of my breath with her help.
I’m so blessed to have the team of doctors, my therapist, and my nurse on this road to recovery. I realize the importance of a supportive environment in the recovery process. For a while I knew something was missing from my recovery: it was a support group for survivors of a DVT and PE. I want to meet others and know I’m not alone in my recovery. I know effort has gone into starting a group here at Fletcher Allen. I hope it takes off, and that I get to hear your story.
UPDATE: The VTE support group had its introductory meeting on June 7. It was attended by the patients and family members. The group discussed the psychological impact of having a blood clot. Dr. Margaret Kennedy, THP program hematologist and Julia Wick, the psychologist associated with the Cancer Patient Support Program, discussed what is known about the issue and the best coping techniques. We are planning to continue our meetings every 6-8-weeks. Everyone with history of VTE (clots in their legs or in the lungs) is invited to join the group. Watch for further information o the Fletcher Allen blog!
Learn more about the Thrombosis and Hemostasis Program at Fletcher Allen Health Care.
Amy Fordham-Duff lives in Williamstown, VT, with her family and pomeranian Suni. Amy enjoys yoga and practicing Reiki.