Yeah I still had some stuff going on three months out. I mean, I was definitely better but still had a high heart rate for a while. Too with it being summer, that can kind of make your lungs feel weird too. Humidity and allergies can be tough to deal with so soon after your PE.

Try to hang in there. Seeing a cardiologist is a good idea, just to be checked out. But I do consider three months to not be very long.

Hang in there - Praying for you. Haven't been in your specific shoes, but we're here for support. Do you have family, friends, neighbors around to help you with the kiddos?

mommato2lilmonkeys

Thanks guys. I'm ready to get this cardiology appt over with. I think if they can just reassure me that I am still moving in the right direction, even if very slowly, I will feel better. It's just the not having any expectation whatsoever of how and/or when this gets easier that is hard for me.

I saw my regular doc yesterday, and he was very concerned that I was still so affected and symptomatic this far out, but I didn't know that it wasn't normal to still feel this way, you know. So that freaked me out a little more.

Thankfully, my husband has been so good to me through this. I feel so bad for all of the extra weight he has had to pull on my behalf though. He has done all of the grocery shopping since March, and most of the housework that's gotten done too!! My kids have been as helpful as they can. My youngest is 4 though, so she's been hard to manage. She knows that I am not at the top of my game right now, and she has really taken advantage of the situation. :)

Thought I would update in case it can help anyone else who is dealing with similar struggles.

I had my cardiology appt on Friday, and they did an EKG in the office and he said that my resting heart rate was still pretty high. He also noticed that I was have tremors in my hands and head, which I did know had come up since the PE, but I had never mentioned it to anyone because I had enough other issues worrying me more. I'm not sure how that would relate to cardiology stuff, seems more neuro to me, but it was interesting that he had specifically picked up on it.

He said that I really shouldn't still be as affected on excersion as I obviously am this far out, so we're definitely going to do some testing.

He sent me home wearing a 48 hour heart monitor, and then he is going to set up another CT and echo.

The CT will tell us what's happened with the clots over the past few months, and the echo will help determine how my heart has held up from the extra work it's been doing.

I feel good about this plan because at least I feel like someone is trying to help me get back where I want to be. We can confirm, or not, for sure whether I'm still moving in the right direction. And if not, then maybe they can help figure out how we can finally get there. :)

Thanks for the update, will continue to pray for ya.

mommato2lilmonkeys

jhallibu311, glad you got a little validation from the cardiologist and a plan. Did you have an echo right after you were diagnosed with your PE and did it show anything? It's not uncommon to have right ventricular dysfunction if your clots were large. And if the clots are still present in your lung or not resolving very well, that is not helping.

Sorry to hear about the seizures. Very strange indeed. Even though I have only had my PE's since June 30, I am pretty sure it will take a good ling time to recover from these. Certainly longer than 3 months. Be patient and keep your powder dry. Attitude is 90% of anything.

Hi, it's nice to meet you. I'm sorry about what you're still going through with recovery, and am also sorry I'm just now seeing your discussion. I've been a little bit sick and not been online too much lately.

I'm glad you've seen a cardiologist and have some plan in place. I think that at 3 months into recovery, it's too soon to have any firm idea of whether you have a long-term or permanent condition, including pulmonary hypertension (because if you still have clots resolving, your pulmonary pressures could still be high now but will lower naturally when those clots go away), but it's not too early to get some of these tests and have a baseline to see where you are now. That will help your doctors in case your symptoms continue to be problematic over the next several months, because they'll be able to repeat the tests and see whether there has been improvement and how much.

I will tell you that for some reason at 3 months, I had in my head that it was time I should be feeling "all better." And because I still was struggling with a lot of day to day things, I got really depressed at that point in my recovery. I got suddenly extremely impatient and felt like I needed to do something to make myself get back to normal right that minute. Unfortunately, we just need to learn to be really patient with recovery, because it takes longer than we want it to. It's good you're setting goals and increasing your activity as you can, that's a reasonable way to handle things. But remember too that you're taking care of 4 kids, and that takes a crazy amount of energy, so I think it can slow recovery some if you're not getting the rest you need. I had a toddler and a newborn when I got PE, so I know it was really difficult to rest. Also, if you're getting seizures every day, even if they're not as bad as they had been, that's exhausting to your body as well, and that's a complication I don't think any of us here had to deal with during recovery. In that way, I'm not surprised you're not bouncing right back from this. I don't think it necessarily means that you'll have permanent issues, you probably still need more time before that can be seen.

How has your BP been running since? I ask because I have heard of people having hypotension or even tachycardia after PE, when they change positions, usually from sitting or lying down to standing (it's called postural orthostatic hypotension or postural orthostatic tachycardia). I believe that in some cases it can cause tremors or even more severe seizure-type episodes. For most people I've heard of having that problem, it eventually goes away as their body recovers more completely from the PE. If your cardiologist thinks it likely, there are particular tests he can do to see if that's what it is.

Try to be patient, I always say this and feel kind of like a broken record, but 3 months really is still early in recovery from a substantial PE. So give yourself time and focus on your overall progress, remembering that recovery is also not always just a straight shot toward getting better, we often make some progress and then have small setbacks as well, as we figure out how to balance our life afterward. I hope you get things figured out and feel better soon.

Thanks for all of your replies, and sharing your experiences! Even though we may not have all have the exact same experiences, it still helps a lot to have people who can at least relate to some degree.

RMB, they did do an echo my 2nd day in the hospital, and they just told me that it came out "normal". So hopefully, the repeat one will be good too, and I can just focus on continued healing, even if it's slow. :)

Shilosmommy, you are so right about the 3 months thing!!

I realized that I will actually be 4 months out next week!! Hard to believe!! And I was really handling it all pretty well, I think, until I got to 3 months out! Then I hit a wall!!! LOL

It's sort of like that first few months after you have a baby, and you're in euphoria of this new life, so you don't mind all of the extra work and lack of sleep at first. After that first few months though, the reality of how hard and difficult it really is sets in, and you realize you are working on fumes. LOL That's how I feel.

The first couple of months after the PE, I was just happy to be alive!! Any ache and pain had to be better than the alternative, right? At 3 months though, the shock wore off and reality hit me hard in the face, and I could no longer deny that this has been really life-changing and hard!!! So, I think I just need reassurance right now that it will get better, because I'm not seeing that light at the end of the tunnel yet. :)

I too am hopeful that these new tests can either put my mind at ease a little, or lead to better answers and treatment.

Oh, and my BP has been good since I've been out of the hospital, thankfully!! It's just my heart rate that goes soaring every time I move!

I experienced almost identically what you describe emotionally. In the first months, I was just so happy to be alive and felt grateful for every little thing, and I accepted easily the pain and discomfort of recovery. But for some reason, at that 3 month mark, I suddenly felt "done" with the whole thing and ready to get back to normal. But my body wasn't ready yet, and I found it super frustrating. Clots just take a really long time to feel better from them, wherever they are in your body, and then PE has the added thing in that it affects so much of the body, it just requires a lot of time.

I think I came here to ask a pretty similar question after my PE. I got sent home from hospital with a packet of Xarelto and a leaflet and no mention of how badly affected by the PE I would be or for how long. It was a good 5-6 months before I felt 'normal' again. I had chest pain and could barely walk upstairs to the bathroom without feeling like I was carrying a grand piano on my chest. My GP didn't really know much about recovery but thankfully this forum was very helpful. I may not have posted much but I read a lot and found comfort in other peoples posts about the same things.