← Return to Pulmonary Embolisms (PE) That Magically Develop - No DVTs

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Hi. I happened to look at this for the first time today and search on "Pulmonary Embolism" so I realize my comments are being added to posts that are 1-2 years old, but worth a shot to help...

In addition to getting tested for Factor V, also have your hematologist test your Protein S - both function and activity (not sure if those are the right terms but there are two separate blood tests).

In 2014 at age 42 I stood up at work one day and doubled over in pain in chest; within minutes every breath was terribly painful as was bending over. Turns out I had a DVT behind in my right knee and a massive bilateral PE and was hospitalized for almost a week. Well through that process it was determined that I have a Protein S deficiency, which we also figured out was genetic on my mother's side of the family.

I then had a run (about 1 year) on Coumadin and Lovenox (when flying for work) before I reverted to baby aspirin.

Then in 2020, I had another much smaller PE and no DVT was ever found. Since then I have been on Xarelto (20mg daily at first, down to 10mg after about 2 years) and I expect to be on it for life.

So far so good, nothing since, but I happened upon this today because a difficult to diagnose case of pneumonia (lungs sounded good multiple times to doc listening and a clear chest x-ray) led me to another CT scan with dye to rule out a PE. Thankfully no PE but discovered the pneumonia.

Long way of saying, Protein S is another one to get checked out as it relates to clotting disorders (as is Protein C I think).

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Replies to "Hi. I happened to look at this for the first time today and search on "Pulmonary..."

Hi @dsz7. Thank you for sharing your story with about dealing with pulmonary embolisms. That had to be quite frightening, especially at 42. Not something you’d ever expect. But at least genetic testing showed the underlying cause so there’s a treatment plan in place.

Genetics are fascinating as you’ve found out. Do you or your mom remember anyone on your mom’s side of the family having blood clotting issues?

By the way, welcome to Connect. While some of the comments in this particular discussion are dated, they still remain relevant. And now that you’ve shared your story, the discussion will be revitalized. You may never know how many people you’ve impacted with the information you’ve given. So thank you!

I’m relieved to read that your latest lung issue isn’t a DVT. But I’m sure that caused a bit of anxiety until you were ultimately diagnosed with pneumonia! Are your lungs improving now with antibiotics?