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Day 26 of 30 Days of PH Topic: SubQ life This is Laura’s story @lalpaca I was diagnosed with in1995 when there was only one medication given to PH patients. Flolan was what was offered to me, but I declined it. I did not want to commit myself to have a line placed in my chest. Dr. Robyn Barst agreed to let me be her guinea pig and put me into all the studies that came her way. I can’t remember how many studies I was in, but it was a ton! After years of maintaining my PH as stable, I started feeling winded and more tired. Dr. H, my PH doctor, wanted me to go on IV Remodulin but I said no. She put me on Tyvaso and that only lasted 4 months. It just really did a number to my asthma. After much consideration, we both agreed on my going on subcutaneous Remodulin. She did warn me that it was very painful. Boy, she wasn’t kidding! Being on subQ has made me experience excruciating and debilitating pain. I will say this, it is not for the weak. While being on it has improved my PH, having to deal with the pain that comes with a site change every six weeks is not easy. I had to stop working and go on permanent disability because the pain interfered with my job performance. I was a medical assistant for an OB/GYN. I loved my job and when I had to quit it really broke my heart! Good things that came out of being on subQ Remodulin was that I was able to go back to school and graduate with my BA in Latin American and Caribbean Studies. I am currently enrolled in the accelerated nursing program to get my BSN. It has been my lifelong dream to become a nurse. I do have doubts that being on subQ will interfere with my studies because, at times, I am bedridden for a week when I do a site change. But, I push myself to keep moving. I have faith that I will be able to accomplish my dreams regardless of my illness. Like they say “I have PH, PH doesn’t have me”. #30daysofPH #subQremodulin
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