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.
Hello folks!
I have been lurking for quite a few months and wanted to share my story in case anyone found my experience helpful. I am a 59 year old male and was 58 at the time of my event.
I went to the ER this past Halloween (10/31/15) and was diagnosed with multiple bilateral (both lungs) PEs. Fortunately, they were relatively small.
I had been on a long (10-day) car trip in late July - early August and started having shortness of breath symptoms in mid-September that came and went until they got a little worse in late October until I started getting side and back pain that sent me to the ER.
I was in the hospital for 48 hours and received three shots of Heparin. Upon leaving the hospital I went on Eliquis (Apixaban) 5mg tablets twice a day for six months. Before leaving the hospital I was found to have no clots in my legs and my heart had suffered no strain. I was thankful for all that.
I recovered fairly quickly (was able to do two mile walks by six weeks) but I did have an occasional plural friction rub on my left side for the first couple of months (felt like a vibrating cell phone when I breathed) and did cough up bloody mucus a few times the first few weeks. I did have occasional back and side pain for the first three months or so.
I had no side affects taking Apixaban. I had no diet or other restrictions other than no contact sports (not a big deal for me...I lift weights and run/walk for my exercise.)
Genetic testing found that I had Factor V Leiden (FVL) Heterozygote. Interesting because I could find no clotting history with my parents or either set of grandparents. I have three younger brothers (in their 50s) and two children (in their 20s) and no clotting history with any of them or any other relatives for that matter. Just little ol' me.
I went to see a hematologist and this is what we did. After taking apixaban for six months I went off of it for one month and then got a D-DIMER test which was NORMAL. (Yay!)
From my research and discussion with the hematologist, it appears that FVL Hetero does not carry any more risk of recurrence than a person that does not have FVL. The thinking is inflammation is a greater risk and that is the reason for the D DIMER test a month after stopping treatment. A normal test indicates no clotting activity and minimal if any inflammation issues.
Because of the normal D-DIMER test and FVL Hetero not being an enhanced risk factor for recurrence, the hematologist believes it is OK for me to not have any further treatment. It is likely the long car trip was my trigger, but the hematologist can't be completely certain because of the time lag for the clots producing symptoms. I think it was the car trip myself.
I could have chosen to remain on blood thinners indefinitely and I would have selected 2.5mg Apixaban twice a day if I had. (No Coumadin for me thanks- too much hassle!). But since my recurrence risks seem manageable and the risks of bleeding from blood thinners I was happy to decline for now.
I am taking an 81mg aspirin twice a day and using other natural things to hopefully keep any inflammation away. I have a follow-up with the hematologist in three months to see how I'm doing and revisit any decisions about use of blood thinners.
For me the first few weeks after going to the ER were unpleasant but as everyone says, GIVE IT TIME BECAUSE IT WILL GET BETTER FOR MOST OF US. I feel back to normal again and hope I have no further events!
I have been lurking for quite a few months and wanted to share my story in case anyone found my experience helpful. I am a 59 year old male and was 58 at the time of my event.
I went to the ER this past Halloween (10/31/15) and was diagnosed with multiple bilateral (both lungs) PEs. Fortunately, they were relatively small.
I had been on a long (10-day) car trip in late July - early August and started having shortness of breath symptoms in mid-September that came and went until they got a little worse in late October until I started getting side and back pain that sent me to the ER.
I was in the hospital for 48 hours and received three shots of Heparin. Upon leaving the hospital I went on Eliquis (Apixaban) 5mg tablets twice a day for six months. Before leaving the hospital I was found to have no clots in my legs and my heart had suffered no strain. I was thankful for all that.
I recovered fairly quickly (was able to do two mile walks by six weeks) but I did have an occasional plural friction rub on my left side for the first couple of months (felt like a vibrating cell phone when I breathed) and did cough up bloody mucus a few times the first few weeks. I did have occasional back and side pain for the first three months or so.
I had no side affects taking Apixaban. I had no diet or other restrictions other than no contact sports (not a big deal for me...I lift weights and run/walk for my exercise.)
Genetic testing found that I had Factor V Leiden (FVL) Heterozygote. Interesting because I could find no clotting history with my parents or either set of grandparents. I have three younger brothers (in their 50s) and two children (in their 20s) and no clotting history with any of them or any other relatives for that matter. Just little ol' me.
I went to see a hematologist and this is what we did. After taking apixaban for six months I went off of it for one month and then got a D-DIMER test which was NORMAL. (Yay!)
From my research and discussion with the hematologist, it appears that FVL Hetero does not carry any more risk of recurrence than a person that does not have FVL. The thinking is inflammation is a greater risk and that is the reason for the D DIMER test a month after stopping treatment. A normal test indicates no clotting activity and minimal if any inflammation issues.
Because of the normal D-DIMER test and FVL Hetero not being an enhanced risk factor for recurrence, the hematologist believes it is OK for me to not have any further treatment. It is likely the long car trip was my trigger, but the hematologist can't be completely certain because of the time lag for the clots producing symptoms. I think it was the car trip myself.
I could have chosen to remain on blood thinners indefinitely and I would have selected 2.5mg Apixaban twice a day if I had. (No Coumadin for me thanks- too much hassle!). But since my recurrence risks seem manageable and the risks of bleeding from blood thinners I was happy to decline for now.
I am taking an 81mg aspirin twice a day and using other natural things to hopefully keep any inflammation away. I have a follow-up with the hematologist in three months to see how I'm doing and revisit any decisions about use of blood thinners.
For me the first few weeks after going to the ER were unpleasant but as everyone says, GIVE IT TIME BECAUSE IT WILL GET BETTER FOR MOST OF US. I feel back to normal again and hope I have no further events!
It's kind of fascinating how genes and environment interact . I took birth control pills when I was young with no problem and did plenty of long haul trips . When I did clot, it was after a long drive, and I was over 61 years old at the time. So I think the main cascade of events for me was, age+long drive+ FVL.
Like you, I feel very fortunate to have made a good recovery. I did have some right heart strain that resolved itself, and bilateral infarcts.
All the best to you!
Same with me that I'm guessing age+long drive+FVL caused my clots. I have been on quite a number of long drives over my life including being on a bus for up to 24 hours multiple times up to about 14 years ago. It seems my age was the final straw even though I think the long drive was the trigger.
Best wishes to you, too. Having two copies of FVL requires closer management for you I'm sure.
Interesting that my hematologist mentioned the medical community might be moving away from genetic testing on a first event and not do it until a second event. I was very surprised by that and I might bring that up on my visit in three months to better understand why, especially as it affects preventative treatment going forward.