Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
Hi,
I have been on warfarin for 7 months since a single PE on my right lower lobe. Recovery is still occurring - only over the past month or so have i started to feel really better. I did not have a large clot. I have learned that doctors do not know much about pulmonary embolism recovery at all, noone could explain any of the aches, pains, frequent illnesses and other maladies that have occurred since my P.E; and worst of all it seems like no family, doctors or friend could relate to the bone numbing fatigue some people feel after a P.E.This msg board has been a godsend in helping me understand I wasn't alone in my experiences.
All that being said, I am optimistic and I can start to see light at the end of the tunnel.
I have my review with a hematologist tomorrow to discuss ending my 6 month cycle of treatment. It took a month to get an appointment (on the NHS since I live in the UK), hence my 7 month treatment cycle.
I had a PE for no known reason, did any of you guys have longer than 6 months for your first cycle when without cause?
Regarding Thrombophilia screening, are there any burning questions i need to ask tomorrow? Obviously, I am keen to come off warfarin however not at the detriment of my long term health. However, I am getting married next month and would love to be unrestricted in my activities.
I am also privately seeing an internist and two further hematologists (one is more focused on malignancies, the other on anti coagulation) to ensure no stone is left unturned. It would be great to be able a "normal" life again.
I have been on warfarin for 7 months since a single PE on my right lower lobe. Recovery is still occurring - only over the past month or so have i started to feel really better. I did not have a large clot. I have learned that doctors do not know much about pulmonary embolism recovery at all, noone could explain any of the aches, pains, frequent illnesses and other maladies that have occurred since my P.E; and worst of all it seems like no family, doctors or friend could relate to the bone numbing fatigue some people feel after a P.E.This msg board has been a godsend in helping me understand I wasn't alone in my experiences.
All that being said, I am optimistic and I can start to see light at the end of the tunnel.
I have my review with a hematologist tomorrow to discuss ending my 6 month cycle of treatment. It took a month to get an appointment (on the NHS since I live in the UK), hence my 7 month treatment cycle.
I had a PE for no known reason, did any of you guys have longer than 6 months for your first cycle when without cause?
Regarding Thrombophilia screening, are there any burning questions i need to ask tomorrow? Obviously, I am keen to come off warfarin however not at the detriment of my long term health. However, I am getting married next month and would love to be unrestricted in my activities.
I am also privately seeing an internist and two further hematologists (one is more focused on malignancies, the other on anti coagulation) to ensure no stone is left unturned. It would be great to be able a "normal" life again.
One thing I'd do is to ask for a list of things they've tested you for. I had a few follow up appointments while on warfarin (and beyond) and it appears that they were not as thorough with trying to find a reason as they might have been.
Hope you get back to being normal :-)
Some clotting disorder tests aren't affected by warfarin, but some are. I'd question them if the only testing you've had done (or that they're planning to do) is while you're still taking the meds.
Otherwise, I'd suggest taking notes at the appointments and making a point to get copies of the lab results yourself. It's always good to have those things on file later.