I Believe in the Power of our Minds: Nicole Hogan-Williams
Last February I was diagnosed with pulmonary arterial hypertension. I thought I was just over-stressed and possibly just needed to relax. I couldn’t walk across a street without feeling totally out of breath, fatigued, and dizzy. I just never thought I had a severe terminal illness that has no cure. When my friends took me to the Emergency Room, I was in shock. I had never heard of PAH, and looking at myself in the mirror, I didn’t look sick.
After I was diagnosed, I went to a support group at the hospital and that is when reality sank in. I was devastated to see so many other patients not doing so well. Was this my future, too? I still don’t think I can wrap my head around it totally; sometimes I think staying in denial doesn’t give the disease power and it keeps me feeling positive. The hardest part for me right now is waiting for my disability case to be approved. Its crazy how long they make you wait. My symptoms keep me from working, so I have had zero income for almost a year and a half.
I was living in Los Angeles, and decided to move to Las Vegas because I didn’t have the support from my family that I hoped to have. I needed to get myself away from toxic environments. I am single and I really have no one to lean on back home. So I went to stay with a friend who offered to help me out. It was a life changing moment for me. Now, I travel back and forth to the University of Southern California every couple of months. I also see a local pulmonologist out here in the Las Vegas area every six weeks.
Right now I am on a lot of oral medications, and my doctors are trying to find a way to best manage my disease. My heart pressures are way up, over 100, so it is hard to find a happy zone for me. I recently started having fainting spells, which is scary because it is unpredictable. I am on oxygen at night, and I try to walk everyday. Some days I just can’t get out of bed and I sleep all day. Some days I get up to clean the house, but I have to take breaks and go at a slower pace. Climbing up stairs is challenging, too, but I do try my best and I won’t just give up. All I can do is stay positive, try to keep my mind busy, take my medication and follow my doctors’ orders. I am not ready to die yet so I refuse to believe I will.
I believe in the power of our minds, and I really believe we will find a cure. For the most part I am staying pretty positive. I am also advocating with the Pulmonary Hypertension Association and last week I met with a local congresswoman Suzy Lee,of Nevada’s third district. Tomorrow I am meeting with Senator Jacky Rosen. It is fun and if I can get Nevada to co-sponsor the step therapy bill then I can feel proud of myself for making a difference. I also volunteer around town at local foundations just to help and stay busy. Once a week I volunteer for patient support telephone line and that helps all of us better understand our disease.
I really do try to do what I can and offer my positive outlook on my life ahead. It is really crazy that I have this disease, but all I can do now is learn how to live with it and still be strong.
Nicole is a recipient of the Team PHenomenal Hope Unmet Needs Patient Impact Fund. Learn more about how this fund supports PH patients at teamph.org/unmetneeds.