I Had to Figure Everything Out on My Own: Sue’s Story

I Had to Figure Everything Out on My Own: Sue’s Story

In the spring of 2018, I began having severe shortness of breath. I’m an asthmatic and was using a rescue inhaler constantly, but it didn’t help much. After about six weeks of complaining to my healthcare providers, they did a chest x-ray that was normal.

Two weeks later, I was back in the office with continuing complaints of severe difficulty breathing. I could barely walk, but drove myself to the visit. My nurse practitioner ordered a prothrombin time test with INR and said I may be having a pulmonary embolism.

I thought this was nuts! I didn’t feel I had the proper symptoms for a PE. On my drive home, I received a call from my nurse practitioner telling me to return to the ER immediately because I had a PE.

Because I am a kidney donor, they performed my CT without contrast. It showed many large clots in both lungs. Ultrasounds of my legs were negative for DVT. I was hospitalized three days on heparin.

They were not planning to test me for genetics until I told my hospitalist that my 23 and Me DNA results showed I have the factor II mutation aka the prothrombin gene mutation. I was tested in the hospital and these results were confirmed.

I was discharged on rivaroxaban and switched to apixaban because I get it cheaper on my insurance plan. Being factor II, I will be on it for life. I also have atrial fibrillation, so I take the high dosage.

I really had no follow-up and had to figure everything out on my own. I felt really awful especially the first four months, where I could still hardly get my breath. I didn’t know what was expected and my husband acted like once I was discharged I should be better.

I still remember going on a boat cruise up Lake Michigan with his elderly dad and his girlfriend and being expected to wait on people. And when in port, we would walk to a restaurant and everyone walked so fast. I thought my chest would explode.

It took a year and then pulmonary rehab to get better. I wish I had had a better understanding of the disease process and that my husband had more information from the beginning.

I found NBCA five years later. It has answered questions I’ve had and made me feel more normal. My advice is to get tested and get educated. Support groups also really help.


New Patient Resource Guide
Factor II
Living Your Best Life on Blood Thinners

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