Thank you sometime I feel like I am a lone and I get frustrated and stressed and I say things I shouldn't have said even to some of the doctors. I feel on I am blacklisted but , God has my back . Next month I go to UCLA for my orientation for a lung transplant keep me in prayer π
Hi Bill, there is a lot of hope, don't let it define you. Learn what you can, find a good team of doctors, stay as active as you can (ask for pulmonary rehab if you are able), there are many on this site that have lived with PH for years and have learned how to handle it. Please don't give up, we are here to help support you in all the unknown. It effects everyone differently that is why getting a proper diagnosis helps find the best treatments. Find the specialist that will talk to you and teach you. I pray a lot and God continues to bless me with people like this group that has taught me so much about dealing with this. Hang in there friend, we understand! Heather is a great advocate for us, ask any questions, someone will jump in here for you!!β€οΈπ
I am on Yutrepia. I have had no side effects. It took a while to see a difference but I am feeling better .
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Bill: There is a HUGE ray of hope for Group 2 PH patients. Winrevair is now entering Phase III clinical trials for our group and may become broadly available to us within 2026. Ask your clinic if you might qualify to be in the trial. My clinic is going to apply for me.
Hope i can get to that