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I was diagnosed with CTEPH, have gone through all tests, incl. the pulmonary angiogram to map out where the blood clot/scarring is. The team of doctors preliminarily said I was a good candidate for pulmonary artery endarterectomy, just waiting for results of the angiogram to be sure. Then 2 days ago I learned the cardiologist was leaving and the surgery can’t be done at my local hospital (UVA) We basically have to start over to find a great PH/CTEPH program that does the surgery. We are… read more
I’m sorry to hear that you have been diagnosed w CTEPH as well. I was and probably still am leaning towards the major surgery. It starts out like open heart surgery, put you on bypass, cool you down to 68 degrees or so and then do the work. It is considered the gold star treatment. I’m currently taking Adempas but have not noticed much difference/improvement. For now it’s just wait and see what the 2 hospitals will think. I wish I could find out more about the University of Maryland Medical Center.
Pray God will answer you prayers don't give up.
Pulmonary endarterectomy (PEA/PTE) is considered the primary treatment for CTEPH when patients are eligible candidates. While it is a major surgery involving stopping the heart temporarily, it has the potential to cure CTEPH completely in successful cases. After surgery, patients typically need to take blood thinners Show Full Answer
I have been recently diagnosed with CTEPH , I have an appointment on the 21st to discuss this very thing . I am not sure what to expect, I have other things going on so I don't know. I am interested to hear how it goes and what they tell you.
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