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I am confused I had bilateral pulmonary embolism just before my diagnoses. My diagnoses is PAH from diet drugs given to me at 15. I was 58 with the bilateral pulmonary embolisms.
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Members rallied around someone confused about their pulmonary hypertension classification after bilateral pulmonary embolisms and diet drug... Read more
Mellow is good at our age. Can't handle too much excitement. ☺️
I would think medicaid would kick in, because it pays for your ins. Like others have suggested , please contact the other hospitals, or physicians
Desiree, as others have said, it is important to get the right classification, Based on what you have revealed about your medical history I am not sure you should be on PAH medications. I would suggest contacting your insurance company for assistance. It would also be to your advantage to get a 2nd opinion (or even 3) about your diagnosis. Not being on the correct medications can be disadvantageous and downright dangerous. Also, are you in a Medicare Advantage plan? If so, open enrollment is coming up. I'd suggest meeting with a Medicare broker. They can help you find a plan that may better meet your needs.
@A myPHteam Member wow... that is an amazing and inspiring story, I'm so glad you did not accept the first diagnosis. Amazing. Also, I did not know that about PH medications, really good to know. PH seems so incredibly tricky to diagnose, especially early on and not treating it or treating it incorrectly is the biggest mistake.
Some PAH meds can cause serious issues for non-PAH patients even when appearing to alleviate symptoms. I felt great on Adempas and Opsumit and cried when I was yanked off them when I was reclassified as Group 2. Months later I met someone who was similarly misclassified but for her the correction came AFTER the Opsumit caused her to have a heart attack. She never should have been on the Opsumit to begin with.
I am glad you feel improved and you very well might be PAH, but doctors can very innocently make mistakes with consequences.
This Sunday I turn 75. When I was 38 I had an oncologist tell me my Stage 4 Lymphoma wasn’t treatable. I fired him and after much research on my part, I put together a new team, had radical surgery the first doctor told me not to have and then had a chemo protocol that the first doctor wasn’t aware had become available.
I wish you all the best.
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