Can you tell me a bit about yourself? What do you do for work?
I’m retired now, but I worked in higher education administration when I had my PE. It was fall of 1999 and my husband had recently been diagnosed with a fatal degenerative neurological condition. So we were dealing with his battle with Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s disease. No one knows what caused it and there’s no treatment for it, only a way to slow its progression minimally. Everyone in the family was really thrown for a loop during that time.
How did your experience with pulmonary embolism begin?
Shortly before Christmas, I suddenly fell ill, tired and exhausted with no energy. Since it was the end of December, everyone assumed it was the flu. I would go into work and feel so fatigued that I couldn’t stay. I tried to work from home. Things continued like that. I felt people’s impatience…at home and at work. To some extent I hadn’t really pursued what was going on with my health, because I was focused on my husband’s diagnosis and the family distress and disruption that went along with it. The idea that I, too, could have something major was beyond imagining.
By February, I was coughing up blood. It was a long time to not feel well. My doctor sent me to Brigham and Women’s Hospital and I was diagnosed there. The initial attempt at diagnosis was inconclusive. A passing resident in the Emergency Department assured me I looked too well to be truly ill. But within 24 hours, I had been diagnosed with pulmonary embolism with infarction.
How did it feel to finally get your diagnosis?
In some ways, it was a relief because I knew I wasn’t crazy: there really was something wrong with me. Then I had to find out what it was. One scary aspect of PE is learning that sudden death is possible.
I was in the hospital for over a week. I was just grateful that I could finally sleep and that other people were taking care of me.
It was when I got home that I realized that I might have died. By then, I knew my PE was idiopathic, meaning the medical community could not identify, with certainty, what had caused my body to develop emboli. I was left knowing that my body did something that could have caused my death, for no apparent reason, and that’s upsetting. The apparent randomness of all of this was very confusing. It felt like the universe was throwing random particles at us and nobody knew what was going to come next, because there was no guarantee that my PE was a one-time thing. Indeed, the risks increase as we age.
It was an adventure in living with uncertainty. People don’t like living with uncertainty, particularly when it involves mortality. I took comfort in realizing the good news in that I had not died; something inside me was strong enough to keep me going.
When you were in the hospital, what type of treatment did you receive?
They treated me very well and very kindly. Being at Brigham and Women’s Hospital was just fabulous. I was very tired and I have little recollection. I assume that I was on IV Heparin, because I remember the IV, which I really didn’t like. One day Drs. Arthur Sasahara and Samuel Goldhaber appeared and invited me to participate in a clinical trial involving giving myself doses of low molecular weight heparin. I agreed: the IV went away, and my introduction into the world of living with venous thrombosis began.
You attend Dr. Goldhaber’s support group at Brigham and Women’s Hospital. How did that help you?
It was wonderful to meet other people who had been through analogous experiences of being surprised, of having had real difficulty in getting diagnosed, and living with the uncertainty. It is a great combination of patients and their loved ones with Dr. Goldhaber and Ruth Morrison, who provided the scientific answers to the questions we could come up with. It was very helpful.
It was a lifeline during a nightmare and it helped make the nightmare go away.
After you left the hospital and had to live with your PE, how did you feel?
There was a lot uncertainty. I wanted to know why it happened.
What does it mean that it happened? It was idiopathic, which means we don’t know why. Why did my husband have ALS? The current state of medical knowledge states with great authority: We do not know.
Boston’s Museum of Science has an enormous exhibit about probability. It’s a big wall with lots of balls that drop to demonstrate that if you keep dropping the balls, they’ll arrange themselves in a random distribution.
As I was going through the “Why me? Why us?” phase, I would visit that exhibit and it was as close to an answer as I could find: it happens. I found comfort in looking at that because “we don’t know” wasn’t comforting. The random rhythm of the balls gave me a level of comfort.
I lived through it. I experienced emotional bounces between the incredible blow of having a PE, and the realization that my body responded in the right way and I lived through it. I’m very grateful for having lived through it. I think that’s a source of resilience for me. It’s a sense of survival.
I met the enemy and I lived through it.
It has been seventeen years since Nina’s diagnosis. Nina has since retired from her administrative job in higher education. Nina is still on warfarin and gets her INR levels tested regularly. She also still attends support group to lend her own support to newly diagnosed patients and to learn about the latest PE/DVT research.
Thank you Nina for sharing your experience with us!