My Symptoms Presented as Heart Failure: Kaylee’s Story

My Symptoms Presented as Heart Failure: Kaylee’s Story

In November 2022, I was experiencing symptoms like joint pain and swelling in my arms and legs. I avoided seeing my doctor at first, but then I noticed I was increasingly short of breath, easily winded when I took the stairs and even when having a conversation. I had a little bit of chest pain, though nothing severe or very frequent.

These are the issues that drove me to see my primary care provider. She was flabbergasted by my symptoms, which presented like heart failure, but my heart sounded great if not a little tachycardic (beating faster than usual). She ended up testing my blood for D-Dimer, which is pretty much always elevated when you have blood clots.

She called me the next day and urged me to get a CT scan of my chest right away, so I got one the very same day. It showed bilateral pulmonary emboli, which are blood clots in the lungs. There were a few in my right lung and one in my left.

I had to start Xarelto, a type of blood thinner, immediately and was told to go to the ER if I had any worsening symptoms. I was shook. I never knew anything about blood clots until I had them, and I never knew how common they were.

Since my clotiversary on December 1, I’ve finished my three-month course of Xarelto, was forced to go off my estrogen-based birth control pill, and the symptoms related to my blood clots have improved quite a bit. It will take time for my lungs to fully heal, and my options for birth control are now limited.

I am also still dealing with those other symptoms unrelated to the PEs, like joint pain and edema. The underlying cause is still unknown, which may or may not have contributed to the PEs. While I see new doctors and have tests done to figure this out, I always have to make sure they know I have had blood clots before because I’m now at a higher risk for having more, and there are certain precautions that need to be taken.

In terms of lifestyle changes, I used to do Irish dance, but between the shortness of breath and my other medical issues, I’m not sure when I’ll be able to dance again.

My advice is to be aware, not scared. If you fear having a blood clot, know the signs and know what to do if you recognize them in yourself or someone else. Knowledge is power!


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