Pulmonary Embolisms (PE) That Magically Develop - No DVTs

In June, this year 2024, I was admitted to the hospital for what I thought was acid reflux. My doctor was treating me for the symptoms and I did not improve over a period of 10days. My husband took me to the hospital emergency room, they did a ct scan and found blood clots in my right lung. I was there 4 1/2 days. Now I am seeing a pulmonologist, my regular cardio doctor, and a oncologist. The clots were unspecific, in other words, no determination as to where or why they occurred. I was told that there could be a relationship between blood clots and cancer and that's why I am now seeing an oncology/hemotologist. No diagnosis yet since I had all of the necessary blood work done in the hospital and then after I returned home. Oncologist wants me to see him again in November for follow up blood work. Took me several weeks to get my strength back after being in the hospital and am now on Eliquis 5mg x day and doing ok. I am wondering if anyone else has had a blood clot/s that were non specific to any reason.

Welcome @shubbedo, I had two trips to the ER 2 days in a row followed by an overnight in the hospital for a blood clot that started as pain in the back of my right leg and then one in my lungs. They really didn't know what caused the blood clots but were suspicious that it might have been a side effect of having Covid twice or possibly the vaccine. I was on Eliquis 5mg twice a day for about 6 or so months and then was switched to 2.5mg twice a day. I have to see the cardiologist later this year to determine if I need to keep taking the blood thinner.

At 81, I am trying to keep my activity and daily exercise on track and hoping that helps some. There is some relationship between blood clots and cancer from what I've read. The American Cancer Society has some tips for preventing blood clots along with some other information on the topic.

-- How to Prevent Blood Clots - American Cancer Society
https://www.cancer.org/cancer/managing-cancer/side-effects/low-blood-counts/blood-clots.html

I'm one of those "special" patients that's body defies medical science...
Pulmonary embolisms are the most recent curve ball and I am struggling with the diagnosis and what feels like the lack of "treatment" or "action" with the two sizeable embolisms (one in each lung)... Struggling with all the emotions surrounding it as well. Anyone else struggling after a PE diagnosis?

My wife has severe aplastic anemia and after a 5-day treatment developed fungal pneumonia. She had pleural effusion that required drainage for several days. Several liters of fluid were removed. She was treated with antifungal meds and follow with CT scans. She’s had several nodules in her lungs that have shrunken. It’s not a problem now but is still followed. Effusion has stopped for several months. Talk to your doctor about treatment plans. In my wife’s case the treatment has been successful. I hope yours can be too.

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).

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?

Definitely scary especially when you are otherwise very healthy and active.

My grandfather (mom’s dad) likely died of a blood clot but it was at a time prior to being able to test for these types of things.

I was happy to have found this page - actually wish I would have in 2014 when I was doing a lot of research on my own.

I’m only on my 2nd day of antibiotics for the pneumonia but I am hopeful they will take care of this as I am rarely sick and as I said, otherwise very healthy. Hopefully it will be behind me soon.

Thank you for your comments.