Hi and welcome! What you describe sounds pretty normal for PE recovery. Regardless of what you expect, recovery is not always in a straight line.

I had multiple bilateral PEs in 2010 when I was 35. I actually felt worse about five weeks after diagnosis because I was pushing myself a little too hard to get back to normal. Almost up to full hours at work and feeling cocky about how few symptoms I had compared to what I saw on here. But, I overdid it one day at work and wound up so exhausted I was crying. My SOB (shortness of breath) kicked up badly and I wound up spending the weekend on the couch because I was too tired to do anything else. My doc told me I had just pushed myself too hard and cut back my hours at work.

And, she was right! A lot of us experience this... we increase our activity levels and then pay for it for a few days. But, the thing is, these "bouts" of increased symptoms will decrease both in frequency and severity over time. You are still recovering ... your body is just trying to adjust to that increased activity you started last week.

I had these "bouts" of increased symptoms up until about 11 months after diagnosis. Most had obvious causes ... the last one I went for a long walk in subzero temperatures and wound up just exhausted. (If there's been a weather change in your area recently, that can kick up symptoms too.) But, for the most part, I was living a normal life after about six months ... I just had a few instances of pushing too hard.

Don't punish yourself for not being back to normal yet. Clots are a HUGE stresser on the body and very few people are back to normal quickly. Also, just because you're having symptoms, it doesn't mean the clots are still there. Mine were gone after five weeks (I had a CT at that time) but I still dealt with symptoms up until 11 months. The damage clots leave behind takes a long time to heal, even after the clots are gone.

Cut yourself some slack and cut your husband some slack. Six months (or more) of recovery after a severe health issue like PEs is completely normal. It won't always be like this and someday you might have to do the same thing for him. Now is a great time to get caught up on your NetFlix, phone friends you haven't talked to for a while, get to that book you always wanted to read. Things might be different for a while, but that doesn't mean they'll be different forever.

I'm almost six years out this month and my life is back to normal at this point. Hang in there. It never happens as fast as we want it to, but it WILL happen.

Hi again... just read your journal entry.

I had two thoughts... A lot of people have heart issues right after PEs but they often correct themselves over time. (Hopefully, you'll hear from some of those people.) If you're really worried, ask to see a cardiologist for monitoring for a while. I didn't have heart issues after my PEs, but I did see a cardiologist for a couple of years for monitoring. Wound up fine on everything and it was very helpful for peace of mind.

Also, there is a DVT group on here if you have issues specifically related to DVT recovery. A lot of us hang out on both groups. :-)

Just want to second what TNT said. I didn't have a saddle PE, but my clots were diagnosed as submassive, and I had right heart strain,( right bundle branch block, but no enlargement of right ventricle and it resolved itself over a course of a few months). I also had an elevated heart rate and lots of irregular heart beats. As you described, I'd started feeling so much better, and doing more activity and the wham! I'd be exhausted and feel terrible. I finally seemed to stabilize around the six month mark, where improvement continued to to where I feel like I'm me again The six month mark was also the time frame when my pulse rate finally normalized. The only thing I notice now, is that my asthma now acts up more with weather changes

Oh, forgot to add that I went back to the hospital about a week after the initial clotting episode because I was feeling worse, and ended up having another CT scan. The clots burden had decreased in that short time. So feeling worse doesn't mean that the clots aren't dissolving.

Thank you so much TNT and corvid100 for your replies. I'm really glad I found this site. After I saw Natalie Cole died of pulmonary hypertension I've been reading a lot about that and freaking myself out and making myself more hopeless. Your information has given me a more realistic expectation of how long recovery can take. corvid100 I'm glad your heart issues resolved and hearing that your pulse also regulated is positive feedback.

Hi renaec23

I agree with previous comments.. What you're feeling sounds like how I felt about 3/4 months out. I'm 37 years old and suffered a large bi lateral PE with extensive heart strain 8 months ago. I remember feeling a lot better in myself after a few weeks but made the mistake of over doing things. I was just so grateful to be alive. Anxiety has been the most difficult thing for me as I previously had never been sick give or take the odd flu etc. There's just so many things to take on board and process. I felt weak, vulnerable and really old. A short walk would have my heart racing like crazy. I joined a gym which in hindsight for me was a bad idea so soon after my PE because I was freaked out watching my heart rate go so high on minimal exertion I felt like my body couldn't cope anymore. I hurt watching others behave "normally" without a care in the world and wished i was them.. I read on my discharge notes that I had moderate pulmonary hypertension. Of course I went straight onto google to find out what this was and was so upset. I wish the hospital explained pulmonary hypertension after a pe to me instead of saying nothing as it would have saved me many nights crying myself to sleep. It took me finding this group to discover that in many cases pulmonary hypertension brought on from pe is only short term. Now eight months out I feel ten times better than I ever thought I would and my heart rate has sorted itself out. I think back to how I felt a few months back and it's like looking back at someone
So
Please give yourself time. It is still early days. Your body has been through a lot and needs the time to heal. I know it's easier said than done but try not to overthink things, soon your good days will outweigh your bad. Take care

Sorry for the typos I'm using a temperamental phone:)

Hi honeycombe,
Your story sounds so similar to what I'm going through. I decided to get a copy of the records from my hospital stay and I combed through them and that is where I saw I had a "severely dilated right ventricle" and "moderate pulmonary hypertension". The only thing I was told is that my heart was dilated. Now I will say the cardiologist did offer to do tPA but I (unfortunately) declined. My resting heart rate averages 72 bpm but when I walk around just like you experienced my heart races. And like you I see my husband and friends walking around doing regular activities without a second thought and I must admit I am so jealous sometimes. I also looked up pulmonary hypertension after seeing that in my records and was crying all day yesterday. That is why I decided it was time to join a support group.

Hi!

I agree with what others already said: PE recovery is not linear, you usually get a lot of ups and downs. I had my first bilateral PE in May 2014. As I have experienced some damage in my left lung, I was on a rollercoaster (e.g. symptoms getting better and then worsening for quite some time).

I wanted to add something about my experience with clots not dissolving. The clots in my left lung did not dissolve after 6 months of anticoagulation and were still there at my 1 year and 1 year and a half scans. In the meantime, I had a second PE (this November), which worsened the situation in my left lung and I am now a lifer on Xarelto.
I am 29 and I have a very dynamic lifestyle: I am an academic researcher, I love running and sports in general. My two PEs have put some strain on my life, and honestly I can say that I am not the same as before May 2014 (meaning: I get more easily tired on average, I have some complaints in my lungs, etc.), but the fact that my clots did not dissolve is not preventing me from having the life that a 29-year old normally has :) After my second PE in the beginning of November, I will soon try to pick up running again, even if I know very well it is not going to be easy at first.

I don't tell you all this to brag, but just to tell you that you only need to give yourself time. Don't get too depressed, your life will come back to you. I hope you won't have to deal with clots not dissolving (this happens in the minority of cases anyway), but even in this case, you will get better again! Same goes with the heart issues: many times they just reverse/adjust on their own. My second PE left me with increased pulmonary artery pressure and a bit of right heart strain, but all my doctors said that we will just keep it monitored and it should fix itself.

Plus, I also have a partner who had to take care of me when I was sick and to take on a lot of household chores (still does). I used to feel bad about it, but I turned this into feeling grateful. Plus, he knows I would do the same for him. Your situation is temporary, soon enough you will have time for enjoying your life together again to the fullest.

Good luck and hang in there!

Echo86,
I'm sorry you've had to deal with not one but two PE's. It gives me hope to hear how positive you are and that you still maintain an active lifestyle.

Just wanted to chime in that I had heart damage (dilation and increased pressure) from my PEs, which we massive, in both lungs, tPA administered , the whole nine yards. The heart damage did eventually fully resolve, just as my cardiologist said it probably would. If you started going back to exercise and being more active (which you should do), it stands to reason you're body still needs to adjust to that increased activity. Sheesh, being in the hospital alone requires recover, let alone having a severe health event.

You might want to lay low on reading stuff up on the PH front for now, and while having medical records is a good thing, it's way too easy to read too much into them especially if you're feeling unwell or vulnerable. I mean, there's no one to give you the context for YOUR case. A diagnosis is just that, a diagnosis. But it doesn't give a complete picture since you have to also factor in your age, health, lifestyle, whatever else that makes you uniquely you, and your situation uniquely your situation. It's like reading statistics on PEs. Statistics don't tell the complete story. I think sometimes the information is not even meaningful after diagnosis.

Anyway, hang in there. I don't think your experience with feeling unwell after a few months is unusual. I felt pretty good at 3 months, but it wasn't until the 6 month mark that I felt pretty fantastic.

On 1/16/16 I went to the ER with SOB and chest pain. They found multiple PEs in both lungs (too many to count). I was released from the hospital after 4 days and I felt pretty good for about 2 weeks and then hit a wall. I ended up back in the ER 2/12/16 for another 4 days. I run a fever everyday, no infection, just my body trying to repair itself. This weekend was another bad one but I stayed home and slept. I have a follow up appointment with the Cardiologist on Wednesday.

What I am learning is to take each day as it comes. Do what you can and forget about the rest. It is going to take time. I am grateful every day that I am still here and have one more day with my husband and my son. Give yourself a break.

I can appreciate the title. Adjusting to the "new normal" whatever the heck that is, can be traumatic for not just you but your spouse, children, family members.

For context, my wife was diagnosed with Cancer at age 41 in January of 2015 and we spent all of last year fighting that. Just as she is finishing chemo I have a leg length DVT and then a massive bilateral PE as well. I have been disabled with complications ever since.

Reaching that point of acceptance is different for all of us. For my wife and I, newly married as well - we have been robbed of a great many things. My wife had her colon and rectum removed and now has a permanent colostomy. Both of our bodies are now different - its just how it is but that doesnt mean we haven't been able to have true romance and connect on a totally different level.

Some days are better than others, but I will say this - that I know in my heart of hearts that this is all temporary....Whatever your point of view on faith, I know that has been the one thing that has provided comfort even when it all makes no sense.

Grieve, be angry, be sad its ok. It will pass. Most of all, be challenged to find new ways of intimacy with your husband. I hope you will :)