Chronic Breathing Problems....plz help :-(

[coolgal75_98]

Hi, I really need some help on where to go from here.
It all started at the end of July when I was about 16 wks pregnant. I went to the ER because it felt like my was heart was pounding, short of breath, and like an elephant was sitting on my chest. I was diagnosed with a PE. From then on, I experienced a feeling of no matter how much I breathed like I wasn't getting enough air. I had been to the ER four times from July to November for this and feeling like my heart was pounding. (I was told to come back if I ever felt like that again from the first ER visit).So, I did...four times.
I was finally referred to a pulmonologist in November. He looked at my CT and didn't think I ever had a PE in the first place (5% chance if I did.. very small clot). The first CT scan was bad.The third one showed up normal.

So, he did an arterial blood gas and I was hyperventilating. Well, after I had the baby my breathing feels really tight and restricted. It's hard to do much and I am always feeling short of breath, especially when walking or anything physically exerting. I've had my urine and thyroid checked, a CBC, tried inhalers, Four PFT's since November, a chest x-ray, an ECG, EKG, and a scan where they watch you breathe. I still have respiratory alkalosis.

My PFT's are mostly normal. One was barely normal. I just feel like my muscles or something is tight in my chest and ribs. I find myself working harder to get a deeper breathe occasionally. I don't smoke, drink, and I used to be very active. I was in college, working, and riding my horse. I can barely walk around and I am always uncomfortable breathing.

Where do I go from here? I have a barium swallow soon and another ECG.
Could it be a hernia or pulmonary fibrosis? Could the pregnancy have messed something up inside? No one knows what to do with me. They just say see you in four weeks..then more tests..(military doctors). My elem. school had asbestos so bad, they tore down half of the school.

Thanks, Laura

[National Jewish Health]

It would be important to know how strong was the evidence for the diagnosis of PE, when you were 16 weeks pregnant.  Were you anticoagulated and if not, why not?  When you say, " the first CT scan was bad", does that mean technically bad?  Was it good enough for reasonable certainty regarding the diagnosis of PE?  Good enough for the pulmonologist, who may have been right about your not having a PE, to suggest a 5% chance?   "The normal 3rd scan" wouldn't rule out the diagnosis of PE at 16 weeks but it also wouldn't be normal the third time (assuming it was performed in the proper fashion) if your continuing symptoms were on the basis of PE. Same for pulmonary fibrosis, an unlikely cause of severe shortness of breath, with a normal CT Scan.

With near normal PFT's and, presumably, normal cardiac function, your symptoms continue to be compatible with the diagnosis of recurrent PE.   It would be useful to compare the current PFT's with any prior testing.   An Echocardiogram would help confirm that your heart is not the source of your shortness of breath.  It is always possible that your heart is OK but that you have developed primary pulmonary hypertension, unrelated to pregnancy or pulmonary emboli.

[coolgal75_98]

Also, I pretty much was on bedrest all pregnancy bc of the hyperventilation and breathing problems. Could that have contributed? I am trying now to walk some outside the apartment, but I am so miserable.