Submassive saddle pulmonary embolism

Bestfriends14

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A sort of PSA for everyone. Pulmonary embolisms are not unheard of for those who have ALS, either leg onset or those who are immobile. There are usually signs several days before hand or at least before it gets too serious. Wayne, however, had no signs. He went to the bathroom Monday night, turned to wash his hands and passed out hitting his face in three different areas as he went down. When I found him he was unconscious, with his eyes bulging out of his head and white as a sheet. He started seizing and I called 911 immediately. It turns out he had a huge blood clot in his lungs and several in his legs.

The reason this message is a PSA is because Wayne is still fairly mobile. He walks around the house with his sticks and occasionally does the treadmill. This, unfortunately, was not enough. Wayne was meant to die because of the severity and size of his clot (he had a submassive saddle pulmonary embolism) but he didn't. I give credit to the fast action of the paramedics and the ER team for this. Wayne is still in ICU but will move to another ward for monitoring for the next few days.

Please, if you have ALS, speak to your health care provider to see if there are ways to head things like a PE off. Again, this was unexpected and scary as hell. If it was not for what I had learned on this forum, which is to not wait even one minute when your PALS fall and to call 911 immediately, he would have died.
 

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Nikki J

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I am so sorry. Wishing him a good and speedy recovery.

PEs are a worry and several other members here have had them.

Thanks for the reminder
 

KarenNWendyn

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Sorry to hear about Wayne and I wish him the best for a good recovery. Thanks for the warning.

I had discussed blood clot prevention with both my neurologist and my internist. It’s a double edged sword. Because PALS are prone to falling and therefore head trauma, the risk of being on a significant blood thinner increases the risk of hemorrhage into the brain with a head injury. On the other hand, there is the risk of clots if not treated. It’s a bad situation.

Definitely someone with a history of clots should be on blood thinners. For the rest of us, it’s less clear cut. Range of motion exercises for the feet and calves is helpful including monitoring the calves for swelling, pain, or tightness, especially pain if the feet are flexed upward (dorsiflexion). My neurologist has a low threshold of suspicion and recommends venous duplex scan testing of the legs if any of those symptoms are present.

Warning signs of a PE can include increased shortness of breath, increased heart rate, coughing up blood, pain with breathing. Not everyone has warning signs, or they might be subtle.
 
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KimT

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Karen,
For those of us with no history and no symptoms, do you think a daily low-dose aspirin is appropriate and/or effective?
 

Bestfriends14

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Hi Kim,

From what I understand, it would not be beneficial because a PE is due to lack of movement, thus resulting in a clot in the lungs. It can effect the heart, but aspirin was only given to my husband once they realised the right side of his heart was failing. For prevention, o believe ROM movement s are most beneficial. Maybe someone more knowledgeable can chime in if I am incorrect.
 

KarenNWendyn

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I agree. Low dose aspirin might only be slightly helpful, and that has to be weighed against the bleeding risk.
 
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