All my PAH Specialist said following my RHC that confirmed my diagnosis of severe Pulmonary Arterial Hypertension was "this could be life shortening". Ten years later I am still doing quite well after finding the right medication. No one can tell you for sure how long you will live. We don't have an expiration date stamped on us anywhere. Many have survived for many years after diagnosis.

Michelle, no one can promise you more time. You owe it to yourself to not assume. Nor allow others to assign you an expiration date. I wasted years contemplating the passing of my beautiful baby daughter. She was sick for what felt like years. She was only 2. Her wonderful big sister was 5. My life silently, slowly shattered. I take full responsibility for the way
I handled it. She never heard me cry. I cheered her achievements. I also limited her opportunities. I fell into the trap of living in fear; rather than living with hope. By the time she was 10, we had our routine. The realization of the need for change became apparent. It took time. The loosening of my grip happened. She went to college, married and gave birth to a miraculous baby girl. My baby is 34 years young today. She is worrying about getting wrinkles. We talk daily. My granddaughter knew how to video call me at 2. The fear is real. The sound of her laughter and lil giggles are what fuels my day. Happiness is a choice.

Please, do not allow anyone to assign you an explanation date. No one has that right. We are a multigenerational PH, PAH family. My youngest daughter was properly dx at age 18 months old. They told us she would not live more than 2 years. Take her home and make memories. At one point, I was even told to “make arrangements” for her. On my way home, I went to the funeral home. I was alone and overwhelmed. I gather the information etc.
My ex-husband *(20 yrs) was never able to cope. He never helped make any decisions about her care. It was soul crushing. I did not know how to advocate for her or myself yet. I wasted years grieving for my child. Who was alive. Because Drs told me there was no hope. They believed it.
Fast forward 30 years. My beautiful daughter Sarah just had her 34th birthday. She is an amazing mommy to a brilliant 6 yr old daughter of her own.
I allowed others to steal a part of my life. I would not allow myself to imagine her going to school, prom, graduation. Much less being independent, married or having a baby. I never spoke in a negative way. I kept my head up with a mommy’s smile on my face. Secretly, I didn’t allow my heart the freedom of wishfulness. I had always known God was in control.
When she was about 10 yrs old. I realized. I had to look forward with hope and confidence. Rather than the fearing her losing. She and I began to “live” not just be alive. She blossomed into a truly awesome life force. Her smile is what lights my heart. She attended college and later married. God blessed us with the most amazing granddaughter. Emmy is a bubbly delight. She is pure sunshine. Only God could have known how wonderful our lives would be.
The moral of my story is this.
We have to advocate for ourselves and our family. Keep living our best life. It may not be the life, we thought it would be. It can be even better. Life is an adventure. Grab ahold and live it, one breath at a time.
The sound of laughter and joy of being alive, far out weigh anything else.
You are not alone.🦋
*My baby daughter Sarah with her daughter Emersyn Grace. 🎈

Beautiful! I had a wonderful 60 year career as a medical transcriptionist. But I’m so lost trying to keep up with this damn disease.

@A myPHteam Member while there is no cure for PAH, there are medications that can slow progression, and more importantly help you to feel better. A great source for information about PAH in general and the medications used to treat it is PAH Initiative (www.pahinitiative.com). There videos are easy to understand. They will help you prepare to best advocate for yourself.

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