Biography

I was diagnosed with IPF 6 years ago I was in a clinical trial with PRM-151, for two years. I was told that if the drug worked for me, there was a good chance that I could get the drug for the rest of my life through compassionate relief. For the time I was getting the drug, I remained stable with no advance of my disease. The company supplying the drug ended the trial, claiming that they ran out of money. My access to the medication ended. For two years, once every month, and sometimes three times a week, I would drive 180 miles to receive treatment. I live in Arizona, and the trial was at Yale, so I would fly across the country to get treatment. I never missed an appointment. Since being off the trial drug, I have gotten worse. Because I reciently had a coronary stent, I am not able to take OFEV due to increased risk of heart attack, plusd I need to be on blood thinners for a year. After being a patient at Yale for over five years, my Doctor and her associates have stopped responding to me. Perhaps, it’s due to Covid-19? I called and left messages with no response. I wrote to my Doctor on MY CHART, no answer. I am in limo. I was just reciently turned down for transplant after going through all the testing. I understand the transplant team’s decision why. But, now I am in limbo and not sure where to turn. I have always been proactive and advocated for myself. I am a fighter. But, now I feel I have run into a wall. Trying to figure it all out. I’m sorry for the long post.