Have you had any subsequent CT scans to see if the existing clots are resolving? Not all docs do a second CT post diagnosis except in situations where the clots were complex, massive or severe. Is the conclusion you had clots in your lungs for a year before diagnosis? Was there discussion about concerns with your heart being affected by the clots?

Do you feel you can't work specifically due to not being able to breath? Or is it that you just don't feel good, feel tired, etc. Did your doc give you the ok to go back to work?

I've not seen anyone here that I recall who was rendered permanently disable from their clots in terms of no longer being able to work. Some people who have jobs that are physically demanding though do sometimes consider carrier changes.

I think you should talk to your doc about what you're experiencing . Sometimes if the clots are large they can effect your heart so I'd ask your doc about that, if an echocardiogram wasn't done at some point. I'm not a doctor and an echocardiogram may not have been called for but if your still having issues you just may want to ask your doc about that.

I've had quite a few follow-up scans, CTs, echoes and some other stuff, mostly because they thought I had pulmonary hypertension but the pressure in my lungs dropped to high-normal so I'm okay on that front. The CT scan did show some of the clot still there. Mostly I'm way too tired to be able to do much, I can't walk very far (a couple hundred yards) and though I feel pretty energetic in the morning by the afternoon I'm just wiped despite not really doing much. It did take them a very long time to figure out my year-long severe shortness of breath was due to clots, then the massive PE was on top of what was already going on. I was getting better quite quickly after I started some physio but I seem to have hit a plateau at a level way below what would let me go back to work (at a desk job). I'm six months post-diagnosis and I still need a lot of support from my family for grocery shopping, cooking, laundry, even just driving around to appointments and stuff and just getting dressed often leaves me out of breath.

I think most people start feeling pretty good at the 6th month mark but considering how long you may have had clots, maybe it will take longer for you. I don't know. I had massive clots and heart issues but returned to work pretty quickly but it was hard for a while, just the exhaustion. Part of the issue for you may be loss of conditioning. It could to be the existing clots making breathing more difficult.

Are you told by your doc or medical team you're not ready to go back to work? I just wonder if waiting so long to go back hasn't really helped you in the long run in terms of stamina and conditioning.

NSP...I can relate to you perfectly. I am over a year out from my PE and it seems I can not get a break from feeling tired, aching, hurting, etc. I am working; however, I have to take so much pain medication just to function. I can not afford to lose my job; so I feel I have no alternative. The pain is so intense at times, I become very depressed. I have had the echos, CT's etc., with no problems noted. My next move is PT. If that doesn't help, I am going to move on to acupuncture. I just feel like this PE has done more damage than I could ever imagine. I will let you know how things turn out. Much success to you on finding relief.

I would also wonder what your doctors have said specifically about returning to work because in my mind I can't imagine why it would be impossible to return to a desk job still after 6 months recovering. And honestly, I don't think you can give up on something before you even try. But I know nothing about your age or physical condition, so that's why if I were the one asking this question, I'd direct it to my doctors first. They know your situation and could say whether there'd be any danger in returning to work.

I don't think just having had PE is something which renders someone disabled. Most people, even those who experienced massive PE, recover over time. It does take longer than we wish, and it takes tons and tons of hard work. I do know of one person who ended up permanently disabled after having PE, but that was after more than two years of her really trying and struggling to work in a physical job in nursing, and additional testing on both her heart and lungs which showed she had significant damage. She didn't just feel out of breath and tired, she was passing out every day as she tried to work.

I too would wonder if conditioning might be part of your problem now and you need to work yourself back into some reasonable level of activity again. Also, you say you feel pretty good in the morning. Have you learned how to pace yourself, giving your body time to rest in between activities? I struggled with that as I recovered, because I tried to get up and have a normal day, and then I'd poop out before midday, or I was determined to finish whatever task I started rather than doing it in stages. So I needed to learn to limit whatever I was doing and give myself periods of rest as well. When I'd limit folding laundry, for instance, to 5 minutes at a time, I felt better at the end of the job than if I had done it all at once. So if you're not already paying attention to doing that, then maybe try it and see if you can start building yourself up again.

Some of what you describe, I have to admit that I can't relate to it from my personal experience. And I had massive PE, as well as just recently finding out I have pulmonary hypertension because of the PE. But I give my cardiac surgeon credit because he really pushed maintaining physical activity and had physical therapists come to walk with me even while I was still in the cardiac ICU. On release, he stressed walking at least something every single day, no matter how hard it was, and even if it was just from one end of my house to the other. Although I pretty much only slept for the first month after diagnosis because I had no strength, I still took my little walk across the house a couple of times a day, which eventually led to walking around my yard, which graduated to walking around the neighborhood. Each step up was really hard, but we have to persevere.

It's wonderful that you have friends or family taking such good care of you, but at the same time, I think it can inhibit our return to independence when we get lots of help. I'm personally terribly independent and to top it off I always feel as though I'm inconveniencing other people to ask for help, which means I often reject help which is offered. There are times I look back on my PE recovery and think, goodness I really should have accepted more help from my friends. Yet, if I had it to do over again, I doubt I'd do much different, because I had a real emotional need to take care of myself and my family, and I do think that stubbornness helped me recover better physically and learn to navigate my world again. I had a newborn and a three year old, and a month after diagnosis I sent everyone away and said, thanks but I can take it from here. In hindsight, absolutely not the smartest decision, mostly because now I realize I really wasn't well enough to be caring for tiny children who were completely dependent on me. I look back on that time and it was absolutely the hardest thing I've ever done in my life, because when you have a three year old who cannot be contained escape out the back door and make a run for the park, it doesn't really matter how out of breath you feel, you have to go running after them. Grocery shopping was hard, yes, and I must have looked a fright because people were so nice and polite and constantly asking if I needed help, but that was actually relaxing in comparison to taking care of the kids (who I didn't dare shop with). I used to wish I had a normal job because it would have been so much easier than taking care of the kids and trying to maintain a clean house and cook.

I don't say this to put myself up on some sort of pedestal because I certainly don't belong on one. Each of us does the best we can, and I'm sure you've been trying your best as well. I'm just trying to share that during that time, I was miserable, in constant, terrible pain, out of breath, exhausted. Every single day I felt like I couldn't do it, but somehow always managed to successfully get to the end of the day. Over time, it slowly got easier and returned to a more normal routine. I think that anyone can do that, but we can't hold ourselves back the second something feels physically uncomfortable or we'll never make progress. I feel like if I hadn't pushed myself in those early months, I wouldn't have even the level of relative normality that I do now have.

I do think six months is too early to give up. Being that you apparently had clots for some time before diagnosis, I'll be honest it wouldn't surprise me if you don't return to the same level of health you enjoyed prior to your PE diagnosis. But it doesn't mean you can't learn to live a normal life despite that. As long as your doctor doesn't have objections, I would work on pushing a bit past the boundaries you now have, work on taking care of more of your day to day responsibilities on your own first, and think about how you can return to work again; some people start with half days for a time so they build themselves up to full time. Even if you ultimately end up unable to keep up with that, by trying to get back to normal you will be able to describe to your doctors exactly what happens when you go grocery shopping or cook a meal or go to work. And that would be important because if you truly are *unable* to do those things (as opposed to I don't think I can do it so I haven't tried), then there would have to be more going on physically and it will help your doctors figure out what is wrong. But please don't underestimate the loss of conditioning you've experienced, particularly since your problems started well prior to diagnosis and I imagine that means you haven't really been doing things at a normal level for much of the past 18 months. It takes time to build that back up again, from the point that we start working on it. And patience also cannot be underestimated either, because the results don't happen overnight and it takes consistent work over time. It's not a natural trait of mine by any means, but I've had to learn it.

I've already tried going back to work twice. After the massive PE I started doing daily physiotherapy which was giving me huge leaps and bounds in improvements, but I based my return to work date on the assumption that I would continue getting better at the same rate, but I didn't. Unfortunately I didn't just plateau but slipped backwards. Then my doctor forbade me from exercising while they thought I had the pulmonary hypertension since it's heart strain and failure that kills you. Now I am cleared from the pulmonary hypertension I have restarted the physio and will also be starting pulmonary rehabilitation at the hospital. I don't seem to be getting any better though, so I was wondering if anyone else had had a similar experience. My docs say that with clots they may go away on their own or they may turn into permanent scarring, I'm starting to fear for the latter.

I think the pulmonary rehab may be beneficial considering how long you may have had your clots before being diagnosed. I would imagine they'll do a lung function test. If you do have limited lung function, the rehab may help you breath more efficiently, sort of making the most of your lungs function.

One of the things that's difficult to accept with PE recovery is that it's this path with lots of ups and downs. It's not at all like the sicknesses most of us were used to before, where once you're over the worst of it and start improving, you just keep improving.

There's a lot of - Oh, I'm feeling better, things are really improving, then slipping backwards again. So when you describe that happening to you, that doesn't surprise me at all, especially considering you're only 6 months into recovery. That part really mentally challenges us, because it's frustrating to over and over again feel like you're getting better, only to get worse again.

I don't think there's a way to plan where we're going to be at a set time, because there are false starts and we need to listen to our bodies and learn to work with what we've got. If our body says absolutely NO, then we have little choice but to listen to it. However, I still don't think that's reason to give up on working or anything else. When I was in earlier stages of recovering and feeling similar to how you seem to be now, a friend of mine who had lived with leukemia for many years told me, 'Don't feel like this is it, because even if you don't physically improve, you're still learning to live with the changes, and over time you learn how to adapt and give your body what it needs while still having a life.' It was something I really needed to hear when she said it, and although I didn't fully trust it at the time, it did give me some hope. And I feel now that it was absolutely the truth. My physical progress plateaued pretty early, unfortunately. But it took me longer to figure out how to live with what I had.

All that said, I think if someone were to be disabled from PE, if you were really experiencing clots for that long a period of time prior to diagnosis, then you're probably a candidate. However, continue pushing your doctors on the fact that you're still feeling so unwell. Do you really feel comfortable with the doctors you have or might it be worth seeking some additional opinions?

I continued really battling my body for four years after diagnosis, basically on my own. My doctor acknowledged what I was experiencing, but didn't do much testing and just gave me a vague 'Well, you have damage from the clots, so this is just the life you're left with now.' No real help or treatment, just a learn to live with it attitude. And so I did as well as I could, but on a regular basis my body would just basically stop. I had no energy whatsoever for days on the short end and sometimes for weeks. And I'll admit that at that point, I was pretty fortunate to "just" be a mom at home because I learned how to navigate those bad moments and still care for the kids, but I couldn't have gone to work if I'd had a job.

Eventually, my family moved to another state, so I was forced to have new doctors. I won't go into all the details, I know I'm long-winded enough as it is, but if you want to know more send me a message. But with the new doctors came some different perspectives, and thankfully I got a cardiologist who really took the situation seriously and worked on getting to the bottom of it. He expressed frustration that my previous doctors hadn't done more. Ultimately, I was diagnosed with pulmonary hypertension (even though I wasn't an obvious candidate for it because my clots came on suddenly and I had direct thrombolysis to get rid of them). That treatment for that has made a tremendous difference for me, sometimes I even forget how much because I still have moments when I struggle quite a lot.

If you're still struggling to this degree, further testing might be warranted, and it might be worth trying to see whether you respond to certain medications. At six months, you're really just at the point where most doctors would even consider that, but I think if you can't do normal day-to-day things for yourself yet, and you've had some rehab too, then it's time to try to figure out why. Maybe it's not PH, but maybe it's something else. Or being as PH does make some sense in your case, maybe you need other testing in addition to what you've had already.

I spent four years on my own with no help at all, and I definitely recommend against the attitude of - well this is just how things are. If rehab isn't doing it, then be persistent with your doctor, to find out what will help you feel better.

Good advice!

My PE's were back in 2002. As you, I went undiagnosed for a least 6 months. At that point I was diagnosed with pneumonia. Then, after another couple of months, they got it right.

I've been told that my lungs are OK, but still have shortness of breath. Doc says the shortness of breath is caused by the blood vessels going to the lungs. These are what have been damaged. When one exerts themselves physically these blood vessels are supposed to dilate to increase your blood flow to the lungs. In my case they do not dilate enough to compensate, resulting in a lack of oxygen in the blood, hence shortness of breath.

I still do the same physical activities, but I have had to adjust to doing them at a slower pace. I have learned enough about my body to know when to let up. If I push things to far, it can take me as much as 45 minutes to an hour to catch my breath.

You are not alone with this problem, and I hope knowing that helps you in some way.

Thanks, it does help to hear about your experience. My doctor told me I have to think about getting better in terms in months, not weeks, so hopefully I am just being too impatient about it rather than looking at being permanently stuck.

There are also other factors to consider when it comes to recovery. I also had chronic lung clots by the time I was finally diagnosed. I have since had all of the clots cleared from my lungs. I also had no right heart strain and no pulmonary hypertension. Yet I am still having a hard time getting myself together. I recently worked for 6 weeks straight doing anywhere between 8 and 12 hour shifts. I can barely function in an office setting. I might have to just face the fact that I have to work part time for the foreseeable future.

I have two clotting disorders, liver problems, and type 2 diabetes. One of my blood clotting disorders is auto-immune related. I believe that these other conditions are contributing to my fatigue and other issues. I have gotten much better since my saddle PE. I can breath better and I do not get out of breath anymore. I used to huff and puss just from doing the dishes. It will take you at least a year or two or even possibly three to feel almost normal again. You will still feel very bad on humid days and on really cold days. I have breathing issues on really humid and really hot days.

But like I said, I have APS which is most likely causing all of my fatigue, dizziness, headaches, some visual issues, and major brain fog. There are days when I literally can't remember what meds I took and what does I took. I used to be able to have 15 trucks out on loads overnight and remember details on each load for months after those loads delivered. Now when I was dispatching for my friend I was making so many mistakes I would have to check and re-check my work 10 times in a row just to make sure I didn't make any mistakes. And even then I was misspelling cities, states, addresses, and even the names of the shippers and receivers. Most of those 6 weeks I felt like I was working in a daze. I have high levels of APS antibodies that have not gone away since I had my blood clots. So, in my case. there are a lot of other medical factors that are making me feel on most days like an 85 year old man.

Have you been tested for any blood clotting disorders? Some blood clotting disorders can cause you to have different medical issues depending upon what particular disorder you have. Have you been tested for Thyroid problems, anemia, diabetes? There are a great deal of other issues that can be going on that will also contribute to a slower than normal healing time. I know for a fact that my high blood sugar contributed to my slower recovery time and chronic pain. I think in your articular case more investigation needs to be done. I'm not going to file for disability again, I'm just going to try and find a part time job that will not be so stressful! I hope you feel better.

See all of they typographical errors I'm making. I hate that, but I am too tired to read through everything before I post it. I wanted to say also that I have possible left ventricular hypertrophy, but it is too soon to be diagnosed. I have constant left-sided chest pain that sometimes makes me feel like I'm having another PE, but it is chronic so I ignore it most of the time. Most of these symptoms have been brushed off by my pulmonologist, but the chest pain really bothers me at times. I also have chronic unrelenting pain in my right leg. It can get so bad that I can't sleep unless I take pain medication. All of this is related to my blood clotting disorder.

I hope things are now better since your initial PE in 2015. Are you still unable to work or are you working currently?

Still unable to work.