“I decided there and then not to look at life in terms of what I could not do, but what I could and can do. I decided not to be a victim. I didn’t want anyone’s pity or for anyone to think of me as ‘the sick girl.’ ”
By Kathleen Grady
I was diagnosed with pulmonary hypertension (PH) in May 2009. The doctor prescribed two oral medications and sent me on my way.
As the months passed, I kept getting sicker. I felt tired and short of breath. By June 2010, I was forced to move from my home in Los Angeles, California, to my native Cleveland, Ohio, because I couldn’t live without help.
During this time, I was quite fearful: of the unknown, of being debilitated and of having to rely on others for basic activities.
Upon my arrival in Cleveland, I went to see my new pulmonologist, and he promptly ordered some tests. One week later, I went from having a right heart catheterization to being wheeled into the intensive care unit for heart failure.
My doctor told me I had to get the Remodulin pump as soon as possible. I had read about it, and it sounded too life-changing. I swore I would never do it.
Consequently, when the doctor presented me with this option, I politely declined. The doctor then told me that I would not live more than two weeks without it; my heart was literally failing. Ultimately, my doctor would not release me from the hospital, and my family guilted me into getting the pump.
The first six months with the pump were horrible. I was in pain, sick and miserable. I hated life and felt sorry for myself.
When I saw on Facebook all the activities my friends were doing, I would say, “I can’t do that anymore,” no matter what it was. (Most of the time it was people running marathons and climbing Mount Everest.)
One day I stopped myself and said, “Kathleen, you never ran marathons when you were healthy; you are just looking for things to make you feel sorry for yourself.” I refer to it as my “ah-ha” moment.
I decided there and then not to look at life in terms of what I could not do, but what I could and can do. I decided not to be a victim. I didn’t want anyone’s pity or for anyone to think of me as “the sick girl.” I needed to change my outlook on my life.
I kept waiting for life to be OK, but I learned it already was OK. I just needed to practice radical acceptance of “What is!”
I have a tattoo with my motto in life: “Be happy, joyous and free.” I choose everyday how I am going to feel. I may not feel physically great, but I choose whether I am going to let that affect my day.
It’s quite amazing to know that I have the opportunity to show that people with chronic diseases can live productive, meaningful lives. I use my words and actions to show everyone how to avoid self-pity, which has no purpose and merely wastes time.
I exercise, walk, take the stairs when I can, and do yoga. All of this has strengthened my heart. My heart will always show damage, but I no longer am in heart failure.
I should be dead. Every time I walk into my doctor’s office, he is continually amazed at how well I am doing. I told him that my secret is to never let sickness rule my world.
I have a disease. Big deal, everyone has something.
Kathleen shares her story for American Heart Month. If you have PH and left-heart disease (Group 2), congestive heart failure or congenital heart disease, share your story with the Pulmonary Hypertension Association (PHA)’s Right Heart Blog.
This month, help us raise pulmonary hypertension and heart health awareness through the National Heart, Lung and Blood Institute’s (NHLBI) #OurHearts campaign .
Follow us on social media for information about the link between PH and heart disease.
