Hi There,

You may want to ask the Pulmonary doctor when you see him/her if this is true, but I think they can diagnose Emphysema through chest xrays, CT scans, blood tests, etc. I think the blood tests are used to help determine if oxygen therapy is needed. Again, don't quote me on this.

I did not leave the hospital with oxygen. Some of us may have, but I think most of us didn't. I would suspect that your situation is made more complicated by the emphysema. I hope you start feeling better!

Welcome to the board! I don't have experience with emphysema, so don't have anything to suggest there. But rmb is right in that you should save your question for the pulmonologist. You might consider writing things down as they occur to you so you don't forget anything when you get to the doctor's appointment.

I didn't come home on oxygen with my PEs, although I know there are quite a few people on the boards that did. Hopefully you'll hear from some of them soon!

Glad you're here with us! Keep us posted on your progress!

Hello again,
Thank you both for your replys. I guess I'm looking for answers that my Dr hasn't given me. I do have another appt. tomorrow with her. I also have a list of questions.
Idk...Doc released me to go back to work 2 weeks after I got out of the hospital. I didn't feel ready then, and I still don't now. I simply have no energy, and am so short of breath.
I'm not looking for answers. Sometimes it just feels good to write it down.
Hope to get to know you all soon.
Thanks for listening. :)

I did leave the hospital on Oxygen. 2L/min initially, then I slowly weened myself off of it (using it only when on walks etc). I have a portable Sat monitor and would keep a close eye on things. It was a great party novelty. Everyone wanted to try it.

My PEs surfaced on October 2nd. I just returned to work as of last week but only 1/2 time. I have been pretty exhausted after the half days but and getting used to it. I was suppose to go back 2 weeks post PE but did not feel up to it. I would say don't push it. Give your body time to heal.

Sometimes we don't know what to ask until we are at home, thinking about it. One of the things I learned very quickly post PE is that many doctors don't proactively tell you stuff. Which seems so wrong except I think their approach is to not freak people out. And sometimes, they just don't have the bed side manner. So, I get that. But I have become very proactive so that I get what I need. Makes me feel like I have a little bit of control over my care and what's happening to me.

And I agree, sometimes just writing stuff down helps you get out of your head a bit and sort stuff out.

Also, fatigue is very normal at this point. Some people are out of work a lot longer than that. My doc said it was ok for me to go back to work right away, and I did,. because I wanted to. But it completely kicked my butt.

Congratulations on surviving and having no heart damage!
I came home on oxygen 24/7 after my PEs. I used it all the time for five months. I was told I have early stage COPD and also diagnosed with sleep apnea. I use a C-pap at night, with oxygen hooked up to it. I too had had shortness of breath for a while, but thought it was my weight and overall condition. I do believe emphysema is diagnosed by blood tests, x-rays or CT scans, as well as pulmonary function tests and your health history.
Listen to your body. Everyone has different recovery rates and times. With multiple PEs and emphysema, you aren't going to bounce back as fast as someone with lesser clots and healthier lungs.
I read most of the old posts on this board, and learned so much about how this has affected other people. You are not alone. Keep researching and asking questions!

Oh, I just realized I said "bounce back" in my reply. Many of us don't really bounce when we hit the PE wall, we hit, go splat and kind of lay there awhile before can get back up again! BUT, we do get up.
Maybe slowly, maybe sometimes better than others, but we do get up.

Welcome!!

First, I think it is hilarious that shortness of breath is SOB.

I DID come home on 24/7 oxygen. I had multiple PEs in both lungs and they were large. They did walking and resting oxygen levels on me, without oxygen, and that is why the Dr chose to send me home with oxygen.

After a few weeks, I only had to have oxygen at night. He had a test done where I didn't wear the oxygen, but wore the thing on my finger to test my oxygen level while sleeping.

To be safe, the Dr had me do a sleep study. I have normal sleep apnea, but they found that when I dream I stop breathing. (great) So, now I'm assuming I'm on the cpap for life. (groan)

I can't believe it has only been 4 months for me, because it seems like it has been a year. I am reluctant to change, am stubborn, and hate being told what to do by Drs.

Hang in there. There are more bad days than good in the beginning (from my experience). I'm doing well now, until I go to the Dr and want to argue and then I become mad at the PEs.

Hi! I had a 6 minute walk test before I left the hospital, and at the time my levels stayed about 97-98%, which did not qualify me for home oxygen (per insurance). About 3 months later I was still having shortness of breath and was sent to my pulmonologist for evaluation. He did an overnight oximetry, and as a result I'm on oxygen at night only because I was found to be desaturating at night, which was causing me to have lots of fatigue and chest pain during the day. I don't have obstructive sleep apnea or emphysema, but I do have Pulmonary Hypertension.

P.S. - I'm almost 5 months post PE (massive saddle) and now also in pulmonary rehab.

I loved bkuskies analogy: " Many of us don't really bounce when we hit the PE wall, we hit, go splat and kind of lay there awhile before can get back up again! BUT, we do get up. "

I did not need oxygen and a subsequent echocardiogram was normal. I am surprised that you were not scheduled to see the pulmonologist sooner thought. I had the pulmo doctor do a consult in the ER, see me while an inpatient, and then saw him within a week of discharge! I would try to see him sooner.

I was called in this morning for a pulmonary function test..I got the results., but have no idea what they mean...
They also moved my appt with the pulmonary Doc to the 2nd instead of the 10th.

Does anybody know what these numbers mean on the copy of my tests today??
Thank you inadvance. :)

BTW...I also found out we are going to do a sleep study. Doc thinks I could have sleep apnea....OMG, I am falling apart all of a sudden...lol

I came home from the hospital after my PE with oxygen. I was actually already in the hospital when I had the PE. I had complications after surgery and then was passing out when they were getting me up to walk so I was actually already on oxygen when I had the PE.