30 Days Of PH: SubQ Life

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by Jen Cueva |

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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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