Yeah, they should tell you that stuff. I do think that most people with massive PEs have some evidence of pulmonary hypertension but it usually resolves with 6 months to year on it's own, per my Cardiologist who treated my PE. I had heart damage from my PEs but it corrected itself after a while.

I had massive PEs in both lungs and didn't see a pulmonologist so that's not something that automatically occurs, at least from what I've seen here and in my own case. I think whoever diagnosed you was obligated to tell you for sure. On the other hand, what you are experiencing with the chest pain and what not is so very common during the first 6 months to a year with PE recovery even if there wasn't a heart issue.

Try to just take a minute so you're not freakin' yourself out, which is just going to amp up what you're feeling even more. It will get sorted out. If your pulmonologist thought you were in immediate danger, she'd have admitted you.

Thanks RMB. The problem is, it was my anxiety that sent me to the docs to check on my "cramping" leg that my physical therapist said was nothing. Then boom, Extensive DVT. Then off to ER and find PE as well. They tried to discharge me after one night with Lovenox, but my leg killed me, and PA and I convinced Vascular surgeon to check leg one more time. Boom, it is propagating up my femoral aggressively still. Had to get rushed into suregry for IVC filer...which failed LOL.

So every time I find I wasn't told something or learn I was misinformed, I stop trusting the care and listen to my guy/anxiety more. And I know that is not the best way, I like my team of docs. But you just start to think only you can diagnose yourself. Being your own advocate is different from letting anxiety lead you, but at times they feel one in the same. As most people have said on here, you have to be involved and be stern in your demands for care. It just gets tiring having to do so all the time. And the minute you think youa re letting up, you worry something could happen.

I totally get that. It's like the anxiety drives the self advocacy.

When I started having symptoms of my PE, I was told it was probably anxiety. I had no other symptoms at that time except some mild SOB. That went on for well over a month. Then I started having DVT symptoms. They were classic symptoms, ie redness, swelling and pain. Three doctors blew it off. The first was an Urgent Care doctor who diagnosed me with phlebitis. Even told me that if he thought it was a DVT, he would order an ultrasound but he didn't think it was. Saw a second doc a week later, who was my own PCP. She assumed it was phlebitis based on the urgent care doc's diagnosis of phlebitis and said that if it gets worse, to come in and get checked out. Within a week, the redness and swelling and pain crawled up my calf. My doc was out so I saw one of her colleagues. He totally blew it off, told me to elevate it and go to the gym to work through the pain. Swear to god that's what he said. The very next morning I collapsed on the street from my PE. So trust me, I understand feeling utterly betrayed by doctors and know how difficult it is to trust anyone.

But here's the thing too. It's not helpful to trust no one. For one thing, it's taxing on yourself to be on guard all the time. If you are constantly hyper vigilant and always feeling like no one is telling you the truth, that will make you mental and I think make you sick. So my two cents? If you deal with the anxiety and really find ways to be mindful of your body without the anxiety, it will get easier to know how to advocate for yourself in a healthy way and to trust again. This can be done.

For me, I saw a counselor about a month after diagnosis because I felt so crazy anxious and panicky all the time that it was truly ruling my day to day life. It had to put a stop to it and regain some sanity. I just saw a therapist briefly, like 2-3 times a month for a couple of months and it was the best thing I ever did for myself. The best.

Also, I start trying to practice meditation and specifically doing a body scan meditation (google it). This really helped me just slow down the anxious thoughts. The body scan meditation is good for overall awareness of your body and it really helped me sort out what was maybe anxiety driven and what was something that I should address medically.

There are bad doctors out there, no doubt. Just like there are bad teachers, bosses, mechanics, etc. But there are really good doctors out there too. And so sometimes, it's weeding out the jokers in your provider arsenal and finding a new PCP. Sometimes even taht move can make a difference. I left my PCP after my PE diagnosis for obvious reasons. I then found another PCP who I just didn't connect with so I left her as well. My current doctor is a dream. It's like dating... if you are seeing someone that is unfocused, not forthcoming or acts nuts, you move on.

You really have been through the wringer! I understand having a hard time turning off the anxiety and worry. Once it has saved your life, its hard to convince yourself that it is a good idea to tune out that nagging little voice. I had the same problem for months, myself. I had the "feeling of doom" but still bounced through four doctor's office before someone sent me to the ER and, even there, it took a while for them to be convinced to do a CT.

But I do agree with RMB also. Your pulmonologist would have taken more action if she thought you were in danger. And I agree with her on not doing a CT. What would it prove? You expose yourself to high levels of radiation (200-300 times that of an x-ray), but it probably wouldn't affect your treatment at all. If the previous clots are still there, you're already being treated for those. If the clots are gone, it doesn't mean that something else is causing the chest pain...it could still just be the damage that the clots left behind healing.

I mean, I didn't have a "massive" PE, but I did have multiple smaller ones in both lungs. I had aches and pains and SOB and exhaustion up until a solid 11 months after diagnosis. Even now (four and a half years later), I'll still get twinges in my back along my spine if I'm pushing myself hard. RMB is right that having the pains is really normal during recovery. Clots are really, really, REALLY hard on the body and the damage they cause doesn't disappear overnight, even if the clots are gone.

I'd also encourage you to consider switching docs because after an event like this, you have to have some trust in who you're working with. It makes life SO much easier if you feel like your doc is on your side and is looking out for you. If you feel like you're going into battle every time you go to the doc's office, it is definitely time to find a new one. Especially considering that your doc didn't originally tell you about the size of the PE or the pulmonary hypertension.

Also, you could order copies of your medical records, just to review and to discuss with your doctor. It might help you to work through everything and to have the documents in your possession, just so you feel more in control.

Thanks for both responses. You two always answer my comments, like I have two more sisters. The funny thing is, I like my doctors. All responsive, all good communicators and all postiive and knowledgable. I just think there are too many cooks in the kitchen, and that is my fault. I have a Vascular Surgeon, Hematologist, Lymphedema specialist, my primary, and now the Pulmonologist. So I think some just feel the the ohters are sharing things that they don't have too. I still think somone in the hospital should of told me abpout the Massive PE, but maybe at that point they thought why add bad news? The treatment isn;t going to change. and my poor PCP gets the brunt of my wrath when I am pissed about my care. I told him the inside of my arms above the elbow had been hurting off and on, and he looked at me like I was nuts. Thanks for the ideas and support.
Joe

As tossandturn mentioned, try and get copies of you medical record. Knowledge is power. The system I'm in allows me to access my medical info. When I was diagnosed in the ER, I was told I had bilateral PEs and probably pneumonia. When I accessed my chart, I also found out that I had infarcts in both lungs from the clots. I was also able to read the description of the clots, which fortunately were not massive. Also I found out that I had a RBBB, and other abnormalities on my EKG. So when I followed up with my PCP, I had lots of questions.Even though the clots weren't huge, my lungs were a real mess.My PCP thinks I didn't have pneumonia at all, but an inflammatory response to all the damage.

And like rmb said, find a doc that has strong communication skills. Even though the NP I saw initially misdiagnosed my PE, which is pretty common as far I what I see on this board, I never felt like I was being dismissed. My PCP has always answered my questions and taken time to listen. One time about a month ago, I went in describing what I assumed to be a panic attack. She said that it probably was panic attack, but she didn't want to make assumptions. She referred me for for a holter monitor and echo, just to be sure something else wasn't going on. There were some abnormalities on the echo, but nothing serious, so now she agrees that it was probably a panic attack.

Also please know that in the acute phase of PE, the pulmonary artery pressures rise. The pulmonologist I saw, said they decrease over time. My pressure on echo a 2 months out was 24, just barely in the normal range. He didn't think it would decrease, but I'm hoping it will.Also, the pressures on echo are estimates.

I hope you get some answers and feel better.

You're welcome.

You know, it could be that your current doctors just assumed you knew your PEs were massive.

I know for me, I felt like I had way too many doctors and appointments going on at a certain point and it was just stressing me out. It felt not only overwhelmed by it, but in a way, I felt like it kept me in a sick person state of mind. So, once I knew my heart issue was resolved and that I didn't have any clotting disorders, I stopped seeing my cardiologist and hematologist. So unless you medically need all these doctors, I think you're wise in assessing whether all of them are necessary right at this moment, and just simply things.

You'll be ok!

Hi guys. Quick update. My Ct Scan showed my lungs were clear. Unfortunately, my echo showed pulmonary artery systolic pressure is estimated to be 47 (it was 52 before). So 6 months after PE, my pressure is unchanged. My pulmonary specialist wants me to see a pulmonary hypertension center. There are two great ones I read in Baltimore, lucky me. Has anyone dealt wiht CTEPH this late after PE? My doctor also said they should do a heart cathiter to really measure the pressure and be more accurate, and that it can be done on Xarelto possibly. Or I can wait a few more months and get another Echo.
thanks. I may make this a new post, becasue I tiled this 'Frustrated", and should of put CTEPH.

Its unlikely that anyone would be diagnosed with PH/CTEPH before 6 months as they usually hope that any raised pressure will sort itself out, rather than using drugs/surgery. So if you're being diagnosed at ~6 months, this is relatively early.

Direct heart catheter is usually used to confirm raised pressure, although waiting another few (3) months for another echo is normal. Did they say anything about your right ventricle? That is usually enlarged and the docs should have mentioned this?

If it were me, I'd wait. But I did comment on your other thread that working with a cardiologist specifically may be a good idea, if your do isn't a cardiologist

Rosie, today I went to hypertension specialist. She looked at test results and told me I did have enlarged right ventricle. So next is pulmonary function testcand VQ Scan. Then right heart catheter is next to be more precise. Plus I was instructed to lose 15 pounds and cut drinking back drastically. And still cannot lift weights or run hard.

Sounds like they're making progress which is good. TBH, I only found out that I'd had a massive PE when I took the hospital note to my doc and I asked for my own copy. For me, it was more comforting 'cause I knew I was feeling rubbish and it partially explained why. Similarly, they kept dragging me back in for heart echos every 3 months, no-one really explained why :-). I'm sure they knew what they were doing, but no-one really told me.

Had a VQ scan recently and that apparently showed I had a moderate amount of scar tissue in my lungs (the CTE part), but the catheter showed I didn't have PH (although the doc did through a "yet" in the mix). Good thing was I max'ed the bike test :-). Sometimes its the small things which make you smile.

Since my 2nd set of PEs, I've lost ~20 kg without trying (wasn't too overweight before) and can't be bothered with drinking. Ho hum :-)