30 Days of PH: Research and Advancements

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by Jen Cueva |

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Day 29 of 30 Days of PH⁣ Topic: Research and Advancements⁣ This is Donna’s story @donnahead1961⁣ ⁣ Severe SOB started when I was 27, my son was only 3 months old. On a family trip to Hawaii, we decided to climb Diamond Head. I struggled with SOB but made it! ⁣ ⁣ 3 years later, my symptoms worsened. In an abusive marriage, I thought it was stress. Nope, got rid of the husband, not it! ⁣ ⁣ On the treadmill at the cardiologist’s, within 3 minutes, my HR was 180. He scheduled a heart cath. The next morning, Mom was crying. The doctor said that I had PH. I said, “ OK, what do we do about it?” He said there are no medications for PH and I had 2 years. I thought he was joking. He said transplant may help. Luckily, there was a clinic in Birmingham. I went there for a week-long transplant evaluation. The last day they did another RHC, my pressure had dropped from over 100 to 50. Wow, no transplant at this time! There were still NO medications for PH!⁣ ⁣ The next year, I met the man of my dreams. Six months later, he asked me to marry him, I said, ” I only have a year to live”. He said that he would take a week if that is all we had. In June, we celebrated 26 years. ⁣ ⁣ Flolan came out but I was doing OK. Tracleer came out and I started it. I didn’t like my specialist but found a new one in NOLA, Dr. F. Smart, he moved. His nurse suggested Dr. Ben, we are a perfect match. He has been wonderful. ⁣ ⁣ We tried Viagra and SubQ Remodulin as it was released. We agreed this was no quality of life. He tried almost every med that came out, thanks to research. I was getting worse, my local doctor put me on Orienatram. It wasn't helping, I went back to Tyvaso, later added Uptravi. I had a few side effects but continued to decline. He increased the dosage, I felt like I was dying.⁣ ⁣ ⁣ I went back to Dr. Ben, he looked at my results and said that I was in LVD. He weaned me off of Uptravi, I felt so much better. This past year, I have been on my CCB and Letairis and I’m feeling better. I am grateful for the advancements and research. #30daysofPH #research

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