It was the week of Thanksgiving break in 2024 and I drove the hour-long drive home from college. I was 21 and in my senior year. On my way home, I noticed that my right hip was aching. I had previously been diagnosed at urgent care with hip bursitis two weeks prior, so I didn’t think anything of it.
By the next day the pain was growing worse and then my right leg turned a purple tint, so I went to the emergency room. They said they couldn’t find anything on the ultrasound of my leg and sent me home. A few hours later the pain was so bad I could not walk and felt like I was going to faint.
A second trip to the emergency room revealed an “extensive” DVT throughout my right leg from about my pelvis down. I had a four-day hospital stay while on heparin.
What Almost Got Missed
I was not immediately checked for a PE. The tachycardia and shortness of breath were written off as “anxiety and pain.”
But before being discharged, my mom insisted on a CT scan of my lungs. That was a good thing because it revealed a “fairly extensive” pulmonary embolism reaching 3/5 of my lungs’ lobes.
Fighting for the Right Treatment
The hospital refused to do a thrombectomy because they weren’t comfortable doing it at that facility, so they referred me to a hospital in the city with a trauma center.
The doctor who refused surgery also scared me by telling me I had a high likelihood of dying and that, “If it were my daughter, I’d think long and hard about it.” He also wouldn’t let me call my mom to be my advocate when she wasn’t in the room.
In any case, I had a thrombectomy on December 11, 2024 and was able to walk better immediately afterwards. My incredible surgeon got the whole clot out and I have no scar tissue visible on my most recent scans!
Putting the Pieces Together
While I have a family history of a clotting disorder called Factor V Leiden, I was tested for it in high school and do not have it. More extensive testing showed no genetic causes for the blood clot. Because I had been on the estrogen-based birth control for so many years and did not have any other major risk factors, my clot has been technically classified as “unprovoked” with the birth control as a possible but inconclusive cause.
What I Want You to Know
I will likely be on blood thinners for life and I’m much more nervous in regards to aches and pains. I’ve learned to listen to my body and advocate for myself. The resources from NBCA have given me ways to do this more and spread awareness about blood clots.
You are not alone! I know it may feel isolating and scary, especially for people diagnosed young, but there are so many people rooting for you who understand. Finding community that understands and can relate can be really helpful.
