Chronic PE and pulmonary hypertension
I am a 30 yo WF who was diagnosed with a popliteal DVT four weeks ago. Two days after diagnosis I had SOB with chest pain that radiated down my left arm. In the ER the CT scan read: Thin stellate filling defect in the right lower lobe pulmonary artery indicative of chronic PE. Reflux of contrast in the inferior vena cava please correlate with right sided heart failure. Tiny right pleural effusion (which was not picked up on flat AP and Lat Chest XRAY) right greater then left atelectasis. Multiple sub-cm mediastinal lymph nodes present.
None of this was seen on the chest xray.
They admitted me to the ICU. I was in there for one day, they released me to home although I was still having difficulty with breathing and chest pain.
My ECG showed up with first degree AV block and there were also some inverted P waves on the echo.
The echo showed mostly normal but my Pulmonary pressure was 33.
My internist told me that my PFT was not indicative of Asthma, but it is obvious that I am not able to “expand” my lungs properly.
I continue to have chest pain with SOB. The doctor is blowing me off and telling me that I am fine. I don`t feel fine at all. I can hardly exert myself without getting the chest pain and feeling so winded I have to sit down.
I am not obese, diabetic or have another cause to have had this clot. I had one last year after a surgery. My Lupus ANA testing was negative. Abnormal Labs CRP at .031 Slightly elevated Sed Rate: 33 Normal Range 0-10
Alk Phos: 156 (normal up to 110) (Have been worked up by GI in past, with no reasoning for this to be elevated)
PT/INR: 4.4 (they took me off the lovenox and have me just on the coumadin now) I had a VQ scan for severe sob two weeks before I was diagnosed with the blood clot. The VQ scan was normal.
How can that be normal when the CT scan was not in only a very short amount of time. And if this is “normal” then how can the CT scan say I have chronic clots?
Also, my doctor is convinced that I just need to “walk it out” I have not been asking for pain meds or anything else. I just want an answer as to why I can barely make it up the stairs.
He referred me to a pulmonologist and the group he referred me to said to fax my records in (which the nurse is doing) and then I should get a call within 4 – 6 weeks to be seen.
I am at the end of my rope. I have small children and work as a nurse. Not having any energy and SOB with the smallest bit of activity is awful. And there are times when the chest pain is so severe that I get diaphoretic and have to lay down.
Is it right for this doctor to be so flippant about this?
Thank you for any help you can offer.
Thank you for your question. Your situation is complex, and I will try to address as much of it as I can. Acute pulmonary embolism can cause chest pain and shortness of breath that can be quite debilitating. Fortunately, the majority of patients improve over time and, with anticoagulation, most are left with little disability. Some patients, such as those with previously abnormal lung function and those with large emboli, may be more at risk for disability.
A smaller group of patients will have chronic pulmonary embolism (called chronic thromboembolic disease) and these patients are at risk for developing pulmonary hypertension. The pulmonary hypertension is largely due to incomplete resolution of the clot as well as damage to the pulmonary blood vessels. Some of these patients require surgical removal of the clots and others are treated with anticoagulation and occasionally medications specifically for pulmonary hypertension.
Our best test to look for chronic pulmonary embolism is probably the V/Q scan. Changes can be seen on the CT scan that are consistent with chronic PE, but typically we rely on the V/Q scan. I am not certain what to make of your V/Q and CT results without being able to actually examine the studies. However, one possibility is that you had an acute pulmonary embolism sometime after the V/Q scan and it was picked up on the CT. The changes of chronic PE are not always as reliable on CT so it may have been an acute clot which appeared to have chronic features.
To address your echocardiogram result, patients with acute PE generally have only small elevations in their right heart pressures, however, those with chronic PE can develop very high pressures over time. A more important feature of the echocardiogram is whether or not the right ventricle and atrium were normal in size and contractility.
Overall, it may be that you simply need more time to improve from your acute pulmonary embolism. However, you do sound disabled at this time and if you don’t improve substantially within 3-4 weeks from when you were originally diagnosed and treated, further evaluation is definitely indicated. I hope that this is useful to you and please feel free to write again with further details.
For more information:
Go to the Pulmonary Hypertension health topic.