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Celebrating 5 years of Life!
Hope everyone’s 2026 is off to a great start! I am celebrating the 5 year anniversary of my diagnosis!
I was diagnosed with idiopathic PAH on January 12, 2021 at 29 years old and it has been a WILD ride. At the time of my diagnosis, I was straddling functional classes 3 and 4 – I had some characteristics of each. I went from healthy to not being able to do the laundry or walk from one room to the other. I’ll never forget the day I learned what pulmonary hypertension was. I was terrified, all I could think about was everything this disease was going to steal from me. All the things I couldn’t do – it was like an ongoing list of things being added to the “can’t do” column. There were points during these past 5 years that I didn’t think I was going to make it to this milestone and a few very close calls. I have been admitted to the hospital 12 times within the last 2 years. I have been on a few different treatment protocols. Each year has presented its own challenges and obstacles – it hasn’t been easy.
Here I am 5 years later and I am so proud of myself. This disease has remodeled my pulmonary arteries, but it has also remolded my spirit and mental strength. I have overcome amazing things. It has given me great perspective and appreciation for the things that truly matter in life. I’ve been moving things out of that “can’t do” column into the “can do” column. In June 2024, I started strength training twice a week and have kept it up ever since. When I first started I was using 2.5 pound weights and now I am up to 10s. I can walk a mile now with limited stops. I can cook dinner and do the dishes without feeling like I am going to pass out. I can dance again! I am stronger in my faith.
I couldn’t have done this without God, my family and friends. I am thankful for my medical team, the researchers who are still finding new treatments and to the patients who bravely walked into the unknown to fight this disease. Thank you to everyone who has shared on these forums over the years, it has been invaluable. That being said, feel free to reach out to me if you want to know more about my experience. I am currently on continuous IV Veletri infusion (since September 2023), tadalafil and Winrevair (since July 2024). I have taken Opsumit, Orinetram, Uptravi, and Adempas.
Hopeful for many more years! Have a great day everyone 🙂
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4 Replies
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Thank you for your uplifting post. I was diagnosed with PAH 3 and half years ago. It’s been a bit of a roller coaster. I’ve had 2 progressions of the disease and when that happens I get very down and fell like I can’t find any hope. I started on a new medication – Tyvaso – a couple of months ago and so far it’s been the best thing ever. I didn’t think I’d get to the point where I was before the first progression but here I am. I’m back on the treadmill 5 days a week, walking at 2.5 miles per hour and not tired when I’m done. I have energy after work, can run errands without being exhausted. When the disease gets bad again, which it’s bound to do, I just have to remember that there is hope to get back to feeling better.
Blessing and prayers to everyone who is struggling. It’s hard to remember when you’re in a bad place, but things can improve.
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Hi @Karen Endelman ,I’m so glad to hear you’re finding success with Tyvaso. I can only imagine how wonderful that must feel after the many ups and downs you’ve experienced since your diagnosis. It can be a long journey with a lot of trial and error to find the right treatment, and I’m so happy it sounds like you’ve found something that is working for you.💜
You mentioned, <b style=”font-style: italic;”>” It’s hard to remember when you’re in a bad place, but things can improve.” I truly appreciate you sharing this positive update with us in the forums. I can only imagine how meaningful this is, especially after living with a diagnosis for 21 years.
Your story offers so much hope to others who are going through similar struggles. It’s a powerful reminder that even during difficult times, better days are possible.
Thank you again for your openness. I hope you continue to have many more of these “feel better” days.🙏
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OMG, what an incredible update , @meghan-nevada ! I remember talking with you because you are in the Houston area, right? I can’t believe it’s been 5 years! ❣
I’m so excited and celebrating with you how far you’ve come since your diagnosis! Thank you for sharing your uplifting post! I know by you sharing your story, others will find hope and inspiration! 🙏
Awesome job on your endurance and know we are here cheering you on and look forward to many more updates! 💜
Take care and Congrats on your 5 year PH -anniversary! 😘
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@meghan-nevada Congratulations and thank you for sharing because it offers encouragement for others! I would love to interview and share your positive attitude with others in my column sometime.
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