My mom got dx with Pulmonary Fibrosis 5 yrs ago. Besides a chronic cough, she has not experienced remarkable symptoms. Her pulmonologist visits thru this January have not revealed any significant changes or concerns. Her O2 sats were 95% in Jan.
She went on vacation to florida the beginning of March for 3 weeks. She played shuffleboard for hours and went on long walks, no acute SOB.
Immediately following the airplane ride (3 1/2 hours), she started feeling significantly short of breath (immediately).
She called the pulmonologist who did not see her, but put her on antibiotics and a steroid and gave her a rescue inhaler. All did nothing.
2 weeks later she insisted on seeing the pulmonologist. The NP took her 02 sats and she was in the low 80's upon exertion. She can't walk up the stairs on her own.
She was started on home 02 and scheduled for a right heart cath to confirm a suspected diagnosis of pulmonary hypertension. According to the NP, she was hopeful that the PH would be confirmed and a medication could be started to improve the dyspnea.
Today was the heart cath--no pulmonary hypertension, no problems with either side of the heart.
What do I need to be looking for? The cardiologist asked if they worked her up for a Pulmonary embolism, and I am sure they did not. Should I be insisting on that?
What could be causing the SOB and low oxygen levels? Could pulmonary fibrosis progress so rapidly , or is there some acute issue at work that needs to be worked up in the hospital. Should I send her to the ER?
ALso, she was only diagnosed with PF after a bronchoscopy, an open lung biopsy was never done.
The diagnosis of pulmonary fibrosis (PF) by a non-open lung biopsy must be suspect. Even if that were the correct diagnosis, the absence of progression as determined by the pulmonologist in January would rule out clinically significant PF. And, no, this disease would not progress that fast, in any event.
The circumstances of your mom’s onset of shortness of breath strongly suggest that she has had pulmonary emboli and should be re-evaluated for that diagnosis immediately. The cardiologist was right to inquire about this diagnosis. This can occur without her having pulmonary hypertension. An additional possibility is that she did have an acute elevation of her pulmonary artery pressure due to pulmonary embolization and that resulted in shunting of blood from the right side of her heart to the left, via a previously unopened atrial septal defect.
Your mom is at high risk of continuing to have clots to her lungs and you should insist that she be re-evaluated without delay.
Thank you. My mom did get seen in the ED, who appeared to rule out a PE. Her blood work showed the possibility of a blood clot, but the CT scan did not show any clots.
Her pulmonologist has been less than responsive, and has provided us no answers as to why the sudden decline, and has done no testing to compare results from testing that was done in March. I am actively seeking a second opinion.
She continues to have significant shortness of breath and is virtually incompacitated.
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