pulmonary embolism

[Blonderagdoll]

I’m 33 years old. I have anti phospholipid syndrome. I had my first pulmonary embolism a month and half ago. How long does the breathlessness last please? Does it go completely? Many thanks in advance

[KellyInTexas Administrator]

I’m sorry you had this happen.

I’ve not had this ever happen in my lungs, so I can’t answer your question.

I remember my mother did, on a few occasions. She had Physical therapy to strengthen her lung capacity after some healing. ( also to keep from pneumonia fro developing- to keep lungs moving.)

She was given a device ( very common) to take home. She was to blow in it, and move a blue ball up a tube, and measure each day if it went further up. ( this was many years ago… )

It did take a little time , ( I’m sure each patient is different due to individual circumstances, and if surgery was needed for any reason, etc…) .

Part of her lung was slightly damaged after one embolism , but she was not disabled in any way- she did recover.

I hope your doctors are helping you gage your process.

[BeckyPRP]

Hi. I’m glad you’re recovering from your PE. I have worked with people who have been treated for PE for several years and, as KellyInTexas says - recovery is extremely individual. That said, many of my patients were surprised at how long it took breathlessness to slowly disappear. There is always inflammation around the area of the original PE which will impact you and, as I’m sure you may agree, the whole experience is incredibly scary which brings with it, a feeling of trepidation when it comes to pushing yourself back to your usual activity levels; when? how?I don’t know if you’re uk or overseas, but in the uk, you certainly should have access to your local Anticoagulation support services where specialist nurses should be able to help you with your concerns and queries. There are also support forums such as thrombosis uk and all of the drug companies supply good patient information leaflets - just look for the website of the manufacturer of whatever anticoagulant you are taking. But due to your APS, I’m assuming you may know all of this? You should also be reviewed by the medical staff who cared for you during the diagnosis of your PE/manage your APS, have you spoken to them?It is also important to factor in the simple logistics of breaking clots down - it takes a while - especially if yours was a sizeable one, so depending on how long ago your clot was diagnosed - you may still have some of it remaining, which will give rise to symptoms. In the uk, we don’t tend to scan again to confirm the clot is gone, you’ll be on lifelong ACT due to your APS so I guess your medical team will base any further management on how you present.. I know this doesn’t give you much to go on and for that I’m sorry, but I’m sure you’ll get some feedback from people on this forum who have first hand experience. Take care!!

[Lure2]

Hi Blonderagdoll,

I have some questions to you; First of all do you have a Specialist for your APS.? I have not Lupus as far as I know and this has before always been a site for only Antiphosholipidsyndrome. I live in Sweden but have been here for quite a while.

I am tripplepositive with high titres and I had a lot of neurological microembolies and also probably many PEs as I have now Pulmonary Hypertension and leaking heartvalves. The microembolies are very difficult to catch on a Scan very often.

Very important to get a correct anticoagulation with the best drug for APS which is usually Warfarin for these special cases. That is why we need a Specialist who dares to give you a rather high INR also if you need that. You wrote before when you were on Warfarin that your INR was set between 2.0-3.0. Probably too low to have any effect on you with your symptoms. Many of us need an INR over 3.5 to be without symptoms (loose the PEs completely).

I am not breathless but you must talk to a Specialist about this. Have you done an Echocardiogram on your lungs? This is a question to a Specialist.

Good luck to find a Specialist for your APS and PEs etc.

[prosinger]

Hi, first I’m glad you are doing ok. I have had APS for a very long time, way before they even knew what it was. It does seem that each individual can experience things a little differently however I have had 2 pulmonary embolisms and Mesenteric ischemic colitis ( a clot in the intestines ). After each episode it takes me about 6 to 8 months to feel better completely. This disorder can do a lot of mysterious things ( if you’d like to know more I certainly can tell you). My first PE was at age 20. I am now 74 and me telling you this should be encouraging as to the course of this disorder. With the proper treatment ( blood thinner) and APS doctor you should do well. Please feel free to ask me any questions and concerns that you may have as I am well versed in APS and can share a lot of info with you if you do desire. Be well!

[catlove123]

I also have APS & ended up in the ER with A pulmonary embolism, a blood clot in my jugular & another in my leg. I was in serious condition and after 9 days of treatment I was discharged on oxygen . I had to remain on oxygen for 9 months; and I still have shortness of breath. Its been 2 yrs since this happened and I continue to have to see a pulmonologist for this problem. But it does get better. I do lung exercises & and continue with my meds. Hope you continue on your journey to wellness

[MaryF Administrator]

I had two relatives that had this, and I remember it did take some time for that to go, (the breathlessness), it was so long ago now, I can't actually remember if they were given any exercises to do, but fine now as far as I know. If you develop severe symptoms do go back to your GP. MaryF

[Willow7733]

Hi! I am new to this forum. I can understand what you are going through. In the past year and a half, but brave had several pulmonary embolisms. I think the time it takes for the breathlessness to go away depends on the damage that was done. How large the clot was. Was there scaring? For me, mine hasn’t gone away yet, and it has been a year and a half. Although, that could be because I keep on clotting in the same lung (my right one).

I have gone to my pulmonologist and my family doctor because of the severe shortness of breath, and now and being sent to a new hematologist. (Which is odd…because shortness of breath is a pulmonologist area isn’t it?) oh well. I hope you feel better soon.

[Zezes-nan]

Hi Blonderagdoll I hope you are starting to feel better but I would see if you can get a GP appointment just to be on the safe side. They can send you for tests if necessary . In 2009 I had a saddle PE I was in ICU for 2 days I was given heperin straight away then warfarin, they kept me on pumped oxygen for about 5 days which helped with my breathing. Hope you get this sorted Take care