Hi, You can expect to be very tired for a while and you may find you have chest and back discomfort, still some shortness of breath and a bit if dizziness at times. Some of it will be from having had a PE but some of it will just be from being laid up in the hospital.That actually takes a lot more out of you than you think.

Hope you get out soon!

There is a pretty huge range of experiences, but here's some of what it was like for me initially.

I learned that getting dressed is actually quite a workout, one that requires you to sit down and rest in between the different steps. I had to have a bath rather than a shower because I didn't have the lung capacity to stand up and wash myself.

I discovered the true meaning of the phrase 'bone tired'.

I had to sit to brush my hair because holding your arms above your head is a lot more taxing than I ever knew.

You will be tempted to just push through the tiredness because that's what you would normally do. Don't do that. It will exhaust you and knock you on your behind for a couple of days if you try it. (But do still try to move around as much as you can without exhausting yourself, especially puttering around the house.)

You may need help pulling the plug out of the bathtub the first couple of days because you can't get yourself up in the tub to do it. (Although I had thoracic surgery too, so it might have been related to that....)

Initially I had to pause to rest and breathe three times going up a single flight of stairs. Once I was up the stairs there was no way I was going down again.

You will need someone to shop, cook, clean, do laundry for you. If you don't have someone who can help you with this, look for stores that have seating available like a cafe in a grocery store or a pharmacy waiting area or better yet a delivery service. Leaning on tables or shopping carts also helped. Carrying things will take too much oxygen. When you do drive for more than ten or fifteen minutes you will need to pull over and have a rest (to breathe, not sleep).

You will probably have a lot more energy in the morning and peter out in the afternoon. You will need to stop and rest very frequently while walking - initially I needed a bench about every ten feet. The first leg of a walk can feel almost normal (100 metres or more), but the distance between rests drops very quickly and gets shorter each time. Plan to do the most important things first until you get a feel for how much you can handle each day.

When you are going out somewhere you will need to be dropped off and picked up at the door instead of parking and walking in. You will likely need to lie down several times a day.

What got me back on my feet again was physio, it was amazing what a difference it made. It started super easy and ramped up each week but it let me start to move around the house again to take care of my personal care (bathing, dressing, etc). I still need help with what they call intermediate activities of daily living.

I use a bipap (like a CPAP) for lying down because it helps to keep my lungs open and get enough oxygen. I also got myself a pulse oximeter for home so I could monitor what my oxygen and pulse were doing (although I also learned that shortness of breath is not necessarily tied to your oxygen level - your oxygen can be fine and you may still feel very short of breath).

I expected to come home and quickly be back to my old life, and that definitely didn't happen. It will likely be months or even a year or more before you start to feel like your old self. But even if it's painfully slow and frustrating it will get better and you will learn to adapt so keep at it.

Yeah I think it's good to remember that not everyone experiences the same thing and most people can function fairly well after coming home. I'd caution against psyching yourself out too much about it or think you're going to be out of commission for a long time. Some things are harder to do when you first get home but it doesn't mean you're going to automatically be laid up for months. It really just depends on your own situation.

I think a certain amount of trying to do things once home helps build up your stamina. My clots were massive, both lungs and I was not in good shape when I was admitted into the hospital and still, within a couple of months I felt half way decent. By month 3, things started to improve at a more rapid pace and I'd say by month 6, I felt really good.

Ask your doc questions when he's ready to discharge you, like when you can start exercising (light exercise at first), when you can go back to work, with whom do you need to follow up, etc. Doc's won't always be able to tell you how you're going to feel and what not, because they just don't deal with this a lot and because people's experiences are pretty vast, but they can tell you what is safe to do once you get home and what they want you to try to do once you get home.

Everyone has different experiences, as the others have said. I actually felt pretty good for the first few weeks after diagnosis, but once I started trying to ramp up my life to get back to "normal" I got hit with increased pain, SOB (shortness of breath) and exhaustion.

You'll definitely have good days and bad days for a while. Try to think of things you can get caught up on that don't require getting up and moving around. Call friends, write letters, get caught up on your NetFlix. This is a good time to call in favors with friends, if you can, so that you don't have to push yourself too hard for a while.

I also had multiple bilateral PEs and I'm pretty much back to normal at this point. Hang in there! Progress seems slow for a while but you'll get there!

Can't agree more. Everybody experiences it differently, but it seems like the majority of us can agree on fatigue and pains being something that will come and go. For the first few weeks, I had to sleep over 12 hours a day because I was just so exhausted from walking to get a glass of water. I had to sit down in the shower because I would get winded from washing my hair. Over time it does get better, it just seems like the first few weeks will be the hardest learning what your body is capable of after such a traumatic event. My biggest tip is to listen to your body, and if you need to rest or take it slower, do it!