Absolutely you should ask for a pulmonologist. If being diagnosed with PE does not qualify you to see the expert on pulmonary afflictions, when would you EVER qualify? In one visit, the one I saw (1) ordered a clotting factor test (which had not been done by at least a dozen doctors in the large medical center where I was a patient), and (2) sent a note to my family doctor suggesting closer followup of my complaints -- he needed to hear it and it has made a difference. In these times, we have to be our own advocate. Good luck.

Well, I guess the real question would be what do you expect to get out of a visit with a pulmonologist? If you have no idea and it just seems like it might be interesting, I don't know if I'd bother.

Me personally, I didn't want any more doctor visits after my PEs. But, I developed orthostatic hypotension a few months after my PEs and that was when my doctor referred me to a cardiologist and pulmonologist. I got run through a battery of tests and we didn't learn anything new and I moved on. For me, personally, it didn't give me any new information and it took a lot of time. I mean, its GOOD we didn't find anything major wrong ... but, if I hadn't had some other issues, I would have been happy to skip the pulmonolgoist and cardiologist altogether.

In fact, I've only really seen my hematologist 2-3 times, too. He ran the clotting disorder tests and we talked about the results (negative on everything) and that was that.

I guess what I'm saying is, if you're not sure what you're hoping to gain and you don't have anything acute that needs to be addressed, I think I'd just skip it. It's not like pulmonologists have some secret trick that'll make recovery go faster or anything. You're only two months out and nothing you're saying seems abnormal for PE recovery. (Many of us have done repeat trips to the ER, myself included. For me, both trips wound up just being anxiety.)

BUT ... if you feel like you really do want to get checked out (or that your health care has been lacking somehow) , then go for it. If you do decide to see a pulmonologist, make a point to go in with questions and what you're hoping to get out of the appointment.

Me personally, seeing a specialist is more expensive than a regular doctor. Plus, I got really sick of doctor's appointments. Plus, I had to wait like three months to get in. Plus, it didn't add much to my understanding of what had happened in terms of the PEs. So, for me, not so critical ... but not everyone feels that way and you might feel like it is something you want to get checked out. If that's the case, go for it...

I can't say that I ever saw or talked to a pulmonologist while I was in the hospital. I wasn't referred to one either. I had PE's in both lung on May 22,2013.

In fact, my PCP went on vacation the second day I was in the hospital so I only saw him briefly that first day. The doctor that covered for him was okay but I am very glad my regular PCP is back.

I am in the process of asking questions of my PCP as I remember to ask him. I need to make a list as I have thought of a couple more since my last visit and don't want to forget them.

Like Toss said, specialists tend to be more pricey so one sometimes has to weigh the cost vs the information you may or may not get from them. I know I have insurance that helps, put the co pay is about twice my PCP! Plus the wait to get in can be fairly lengthy as well.

At this point, unless I have more problems or issues, I am not planning on seeing a specialist unless my PCP recommends it for some reason.

But if seeing a specialist gives you comfort or makes you feel better about things, then go for it! It is your life and your choice!

I don't think it's absolutely required nor do I think not being advised to see one means you had substandard care. I had massive PEs in both lungs and never saw a pulmonologist. A cardiologist managed my care initially because I had known heart damage, but really, that was it. It was only after my second DVT that I saw a hematologist, and that was only a couple of times, to go over some genetic testing and recommendations for whether or not to stay on warfarin.

After a couple of months, when I still had some shortness of breath I mentioned it to my Cardiologist and he said if I wanted a referral to a Pulmonologist he'd be happy to do that for me, but I declined. I didn't feel like it was medically necessary, and I was realizing what I was experiencing was all part of my recovery. If I had been a year out and was really struggling to breath, then yeah, I would have seen someone. But those first few months after recovery, I think some level of chest discomfort, feeling fatigued and winded are to be expected.

I'm with Toss and Kslady. The last thing I wanted to do was bring more doctors into the mix. I think addressing your overall health and your history with your new PCP is the first priority. Developing a partnership with a primary care doctor is key to all of this, in my opinion. That way you not only have yourself as your advocate, but a provider as well. Hopefully he can review your records, and you can both come up with a game plan, but honestly, your PE was only a couple of months ago, so you still have plenty of healing to do and I'm not sure what a pulmonologist would do for you at this stage.

Thank you so much for the input. I am just so tired of not feeling well. I was supposed to see my new PCP this week, but they called and cancelled and I can't get in until August. I feel likeI don't know which way to turn. I normally would just call my PCP to ask questions, but don't have one until the end of the month.

I have not seen a pulmonologist, but since I have asthma I already had a specialist (in allergies/asthma), and she has had me in a couple times to check lung function and keep track of things. Mainly it seemed she was concerned about the impact of the asthma possibly interfering with or complicating the healing process. Also, due to insurance company changes, I had to switch inhalers during my recovery from PE, and she wanted to monitor that carefully. I am not sure I would have bothered with a specialist if I didn't have one already on my health care team and didn't have asthma. I am blessed with an awesome PCP who I have complete trust in, which does make a difference. She had the genetic testing done before I even started the warfarin in the hospital, so I haven't bothered with a hematologist either. I think I had very good care without seeing a pulmonologist. But if you think you would benefit from seeing a pulmonologist, then go see one. You are relatively early in the healing process. At 2 months out I still felt yucky most of the time, no energy, got short of breath very easily and generally felt crummy. Everyone heals at different rates, but very few sprint thru the process. So like Toss said, figure out what you would expect to gain from seeing a pulmonologist and make a decision. Good luck.

I agree, Absolutely see a pulmonologist. After all you suffered a "Pulmonary" Embolism. I suffered a massive PE in Dec 2012. My primary caregiver for my PE recovery is a vascular surgeon, as I also have a vena cava filter now. My secondary is a pulmonologist. My third is a cardiologist. I had a total of 6 doctors while in the hospital.

My vascular doc takes care of my warfarin and clot scans.

My pulmonary doc takes care of my lung function testing. Am up to 83% lung function, which is awesome. He also hooked me up with an inhaler to use before exercising and it has made a world of difference.

I am due to see my cardiologist for a scan of my heart within the next 2-3 months to check for any residual damage.

I think you should at least ask your doctor if you should see a pulmonologist. I had a large PE in the main arteries in both of my lungs along with several smaller ones in the bottom part of my lungs. The bottom half of my lungs are dead tissue. I am only a month into my recovery and I am also feeling very tired and short of breath along with the chest pain. My chest feels heavy and I can feel a large mass that should be my right lung rubbing along the inside of my ribs. When I was released from the hospital I wasn't referred to anyone other then my pcp. However my pcp has a recovery plan for me that includes all of the experts that I may need. I think it is a great idea for you to at least talk to your doctor about seeing a specialist. In my opinion it is our lungs and heart that we are talking about! You can't be to careful when it comes to internal organs. My PE caused my liver and kidneys to start shutting down and I am extremely malnourished now because my lungs were taking all my protein trying to repair them selves. Bottom line is you can never be to careful when it comes to your life.