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.
This Wednesday I had a Right Heart Catheter to determine whether I had pulmonary hypertension or not. Not a fun procedure, but not the worst. My mean pulmonary arterial systolic pressure was 25. Which is normal! My right ventricle still showed slight dialation, but no major damage. This was great news, but I wanted to share this story because I learned something I didn't know and maybe some of you don't either.
In February, a few days after having a "massive" PE causing major havoc on my pulmonary system, my doctors ordered an Echo to look at my heart. The only thing I learned was it "looked fine". Fast forward to August. I was experiencing some shortness of breath, and chest pains/flutters. I saw a pulmonologist, who noticed my echo in Feb showed my estimated arterial systolic pressure was 52, and my right ventricle was slightly enlarged. She ordered a CT Scan and another Echo, since it had been 6 months. CT showed no clots, but Echo estimated my pressure at 47. She told me 47 was the same as 52 almost, since these were "estimates". She then told me I had symptoms of Secondary Pulmonary Hypertension, and the test results support that diagnosis. I was not happy. BUT, she did tell me to seek a pulmonary hypertension specialist to confirm the diagnosis. It was great advice!
I went and saw the specialist in October, after 5 weeks of driving myself nuts about this new diagnosis and all the bad things PH could bring. I had concluded I was ready to take on this new challenge, and ready to start treatment. The specialist ordered a VQ scan and Pulmonary test to completely rule out residual clot in lungs as reason for high pressures. Those tests came back clear. Next we had the catheter, which as I mentioned above, came back with pressure at 25!
I was happy with these results, but shocked that the actual pressure was more than 20 less than the estimates! In recovery, I asked the docs if it was possible for an echo test to show normal pressures, and the heart cath to show them actually much higher, meaning Pulmonary Hypertension. They said yes, it happens.
I am just warning you that if you had a large PE, I would pay close attention to the symptoms of Pulmonary Hypertension, and do not hesitate to contact a qualified cardio group who deal in PH. Especially if you had an echo that showed elevated pressures. Given the potential health challenges you could face if you developed PH, I think it makes sense. Most don't experience symptoms until 2 years after accute PE event, and early detection/treatment is important.
This isn't meant to scare people, just educate in case you were not aware. Many people with PEs receive one Echo, and move on and never have an issue. Or have a repeat echo later on to make sure the pressures are not increasing and move on to be perfectly heathy and the body takes care of itself. But just be careful with Echo estimates. The Right Heart Cath seems to be the "gold standard" test for PH.
Take Care JBMC
In February, a few days after having a "massive" PE causing major havoc on my pulmonary system, my doctors ordered an Echo to look at my heart. The only thing I learned was it "looked fine". Fast forward to August. I was experiencing some shortness of breath, and chest pains/flutters. I saw a pulmonologist, who noticed my echo in Feb showed my estimated arterial systolic pressure was 52, and my right ventricle was slightly enlarged. She ordered a CT Scan and another Echo, since it had been 6 months. CT showed no clots, but Echo estimated my pressure at 47. She told me 47 was the same as 52 almost, since these were "estimates". She then told me I had symptoms of Secondary Pulmonary Hypertension, and the test results support that diagnosis. I was not happy. BUT, she did tell me to seek a pulmonary hypertension specialist to confirm the diagnosis. It was great advice!
I went and saw the specialist in October, after 5 weeks of driving myself nuts about this new diagnosis and all the bad things PH could bring. I had concluded I was ready to take on this new challenge, and ready to start treatment. The specialist ordered a VQ scan and Pulmonary test to completely rule out residual clot in lungs as reason for high pressures. Those tests came back clear. Next we had the catheter, which as I mentioned above, came back with pressure at 25!
I was happy with these results, but shocked that the actual pressure was more than 20 less than the estimates! In recovery, I asked the docs if it was possible for an echo test to show normal pressures, and the heart cath to show them actually much higher, meaning Pulmonary Hypertension. They said yes, it happens.
I am just warning you that if you had a large PE, I would pay close attention to the symptoms of Pulmonary Hypertension, and do not hesitate to contact a qualified cardio group who deal in PH. Especially if you had an echo that showed elevated pressures. Given the potential health challenges you could face if you developed PH, I think it makes sense. Most don't experience symptoms until 2 years after accute PE event, and early detection/treatment is important.
This isn't meant to scare people, just educate in case you were not aware. Many people with PEs receive one Echo, and move on and never have an issue. Or have a repeat echo later on to make sure the pressures are not increasing and move on to be perfectly heathy and the body takes care of itself. But just be careful with Echo estimates. The Right Heart Cath seems to be the "gold standard" test for PH.
Take Care JBMC
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
But I don't get it. The issue is really that your echo showed really high and that's why the pulmonologist referred you, right? Why would it be that the cath then shows 25? Is it because between August and October, your pressure resolved that much? Or is it because those results the pulmonologist gave you were wildly inaccurate?
You know, I think there's a balance between being cautious and being overly tested, to be honest. I don't think you were implying this but I can see people, especially early in their diagnosis when they feel like crap poopooing an echo and demanding a right heart cath because they feel the echo won't be accurate. Sure that can happen, with any test I suppose, but it's normally in the ballpark. Otherwise, why would they use the echo as a diagnostic tool if it was so off the mark. To me, it's a case by case thing and it depends on the extent of the PE, our bodies, how good the echo tech is, etc
I think anyone who has had large or massive PEs can expect some heart damage, which in most cases resolves over time. For me, I was lucky because I was assigned a cardiologist when I was still in the ER getting stabilized, because they assumed there were heart issues without even having ordered an echo yet. So I had close monitoring on my heart for about a year. I never required the right heart cath though. I always had steady improvement.
Anyway, so glad you can put this behind you. I know it's so stressful.
I asked why the difference in the estimated echo and cath and was told echos typically over-estimate the pressure. They said it was unlikely for pressure to resolve in just 2 months from 50 to 25. Especially without removing a blockage or taking medication. I still don't get the drastic difference though
I agree there is a balance between being cautious or overly tested. I had learned that early on. In my case, the hospital I started with did not have the reources to connect the dots from DVT to PE damage to PH. And I think that is why I ended up getting more tests than needed. If I was at the current hospital from the start, I think my care would have been more streamlined. These doctors seemed to believe the size of PE and symptoms dictate going for a more accurate reading like a cath. One of the options was to wait and do another echo next year, but they suggested the cath and I agreed with them in the end. I did not want to wait and see if I got PH and come back in two years later with shortness of breath or exhaustion. It seems two years post event is when PH can start to take hold, but it is different for everyone. PH is not to be messed with. They also told me many people simply don't like invasive procedures, and the echo is easier for patients. And after Wednesday, I agree.
I don't blame you for not waiting, particularly if your pulmonologist was already making a preliminary diagnosis. You're right; most people don't like procedures but I suspect that initially, they don't have a choice in tests; echos tend to be the first test regardless. I wasn't given a choice between an echo and cath. I think it's the echo first because again it just confirms what is likely already assumed, that after such a large PE, there is like that kind of damage to the heart. The issue then becomes whether or not it's improving.
It's great you got such good results. Now, there's just you and life ahead of you. Not a bad thing at all.
Often when they're massive, your heart will have had extra strain put on it and they'll detect a dilation on the right hand side. Similarly, they may estimate the pressure as well, but this is sometimes inaccurate, as the OP mentions. Often this is temporary and will resolve itself in 6-12 months. Keep getting monitored, but unless there is something unusual, it may not be necessary to see separate pulmonary/cardiology guys.
This is strictly my own opinion, but wouldn't bother with a pulmonologist unless way down the road you are really having serious lung issues which isn't the norm. I've been on this board for several years and I can count on one hand the number of posts where it appeared it brought any real value to the party.
Having a PE is a very anticlimactic experience. It's all very critical and urgent but then once you're diagnosed and start treatment, it's the complete opposite. Now it's just about recovery. I think I felt worse when I was home for a month than I did when I was in the hospital. So what you're feeling sounds really normal.
Try to relax and read the posts on this board remembering that everyone is different. I'd particularly take care not to get worked up about any PH posts at this point. I had initial heart damage from my PEs and it cleared up completely within a year. Permanent damage is definitely the exception.
I agree with everyone here. I did see a Pulomonologist only after things had not improved long after Embolism had resolved in my lung. I just recently dealt with a PH specialist, and usually they do not want to be aggressive with any treatment/tests until clots/embolism have been resolved for a while. If you experience symptoms long after embolism resolves, and your lung function/heart damage don't improve, that is a different story. At three weeks out, you should just try to relax and let your body heal. And as RMB said, don't throw too many docs in the pot at once, add as needed LOL. I like to know what is going on early, and am very aggressive in seeking treatment. At times it has been very helpful, but at times I got overwhelmed. I wish you the best in your recovery, and search these posts for some discussions that can be helpful.
Take Care,
Joe