Krista Cummings’s PH Story
Living with PH isn’t for the weak, it’s not for the strong either. It’s truly for no one. PH is not known to many people and you feel lost in the world among the normal. Many people nod as if they know your story, but my story is not for the faint of heart.
I was 22 when I was diagnosed and I had just begun my life with my children. I woke up one morning severely ill and unable to breathe. I was healthy up until that day. There was no warning or symptoms. I was told I had 6 months to live. Have you ever felt what it’s like to “live like you were dying”? Well it’s complete panic. I was making my will at 22 years old and making the decision on who would be the best parents for my children when I pass. No young adult should ever have to make that decision, ever. I was literally crying every single day until 6 months hit. I never passed away. Fast forward 7 1/2 years and I’m still here.
I’ve learned many tricks with PH. Showering was literally my enemy in the beginning because I had this brick (cadd legacy pump) attached to my side. I learned there are shower hooks and waterproof bags. The world began to get better. I learned live doesn’t stop just because you have PH. I fell in love even though my walls were up and I learned the right person can knock those walks down to see the true you.
PH let me live again. I know PH tried to kill me and is still trying, so how can it let me live again. Well I took everything for granted until I was 22. Family was something I thought I could see them when I see them and work was my top priority. PH stopped me dead in my tracks. I spend every day with family now because it’s all I’ve got. They’re the ones who were by my bedside when I was sick, not work.
I learned that not every day is going to be okay, but there is tomorrow. Some days I have insane energy and I try to get everything done that I possibly can then I’m literally fatigued for days. Some days I wake up and just want to close my eyes again because the medications I take have some intense side effects. Some days I want to get out, but I have to use a wheelchair. My week or day can change at the drop of a dime because PH is unpredictable and can decide to ruin everything with no warning.
PH showed me the beauty in nature. Have you ever stopped and seen something so beautiful in nature it made you cry? I have. When I had a mishap in 2016 when my medication was failing, I saw over 1000 butterflies in a tree at my house. They stayed for a week until I was on a new medication. I was in so much pain, but every day I went outside and sat at that tree. The butterflies would land on me and just make me cry. It was beautiful.
PH has shown me heart break because some finish their journey too early, but I tell myself to continue for those who aren’t with us today. I’ve learned that PHriends become PHamily and PHamily sticks together. PHamily is a bond that can’t be broken. We may all come from different walls of life, but we all stand hand in hand on the same path.