“I resided in the metropolitan Atlanta area from 1950 till 2013. My husband and I then moved to Rochester, Minn. In or around 2008 I started feeling tired all the time. I went through several doctors and tests. In 2009 I had three major operations: knee replacement, a mesh implant in right side of my lower abdomen and a spinal fusion. After the operations there were difficulties with keeping my blood oxygen level up. I went to a lung doctor and had X-rays, CTs and other tests. The doctor noted a spot on my lung but wanted to watch it. For the next two years I began to deteriorate until I could not walk more than 30 feet without being short of breath and slept all the time. I went to a cardiologist and he did not give me a diagnosis. I then saw a pulmonologist. I had lung cleanings, X-rays, etc. They finally gave me 24-hour-a-day oxygen for low oxygen in my lungs. Two biopsies came back negative.
“My husband encouraged me to go to Mayo Clinic. I must tell you the feeling of well-being and nurturing washed over me and I knew I was in the right place when I met Dr. John Mullon, my pulmonologist. I can’t say enough about how wonderful he is. My health care team set up tests for three days with a daily check-in with my doctor. A biopsy of the spot on my lung was recommended. The Mayo Clinical was the only place that provided this special X-ray. I also had an exercise heart catheterization. My diagnosis was hypoxic respiratory failure, carcinoid lung cancer, hypersensitive lung disease, right heart disease, and PH secondary to carcinoid cancer. My alveoli (Editor’s Note: tiny air sacs within the lungs where the exchange of oxygen and carbon dioxide takes place) do not exchange oxygen as they should and with the PH I don’t get very far before I must stop and catch my breath and have my heart rate slow down.
“The hardest thing I have found is getting people to understand. I know there are others who have it worse and some have it better. I wish we could have cards to hand out to children who stare at you in the stores— something cute and colorful with a simple description. I know this is a rare disease but I believe the earlier we can teach others, knowledge will spread. It really is amazing how little people know about PH or carcinoid lung cancer. I live day to day never knowing what the day will bring to me. Some days are worse than others, some are better. I worry about my health but there is not much to do about it. I have a broken spinal fusion and I have constant pain even on pain pills. My legs are getting unstable so between lung issues, PH and mobility issues, I won’t be dancing anytime soon. I just thank the Lord every day for giving me the day and pray for one more.
“To all my fellow PHers and their caregivers I wish the best for you. I will keep you all in my heart and prayers.”