Going Places: Debra Manahan
This disease has changed my life. From having oxygen only when I exert myself, to now 24/7. Dealing with the knowledge that I cannot do what I was able to do a month ago. Simple things like shopping, and making sure I have enough oxygen to get there and back. These are such a hassle now.
This all started with difficulty breathing. Blood tests, x-rays, breathing treatments, oxygen, and CT scans were all performed. My symptoms became more complicated, so I started to see a pulmonologist. I was diagnosed with COPD, chronic bronchitis, pulmonary fibrosis, and pneumonia. I never smoked a day in my life! Then a year and a half ago they did a blood test to see if I have scleroderma. At that time, a test was also performed to confirm if I had pulmonary hypertension. It was negative.
In April of 2019, it became even harder to breathe. More tests were performed and it was confirmed my scleroderma had worsened, and I now had severe PH. My lungs were not functioning properly and my heart was compensating. I got scared, and started to cry when I heard the news. Now I go to a PH specialist, and I take medication. We are trying to save my lungs as long as possible. It is likely that I will eventually need a double lung transplant.
Medication has come a long way. I am on a new medication called Orenitram. I take it every eight hours with food. There is a lot of documentation. I write down what I eat, and if I feel somehow different (like vomiting, flush, rash, nausea). There is no cure for PH, and it does not go into remission. You realize that each day is a blessing. Live your life, go places that you wanted to see and do things you wanted to do. My husband and I recently went to New Orleans, Louisiana, and we are going to Branson, Missouri in August. We went to Wrigley Field in Chicago to watch the Cubs play. We go to Starved Rock, Illinois often to see concerts. I got married at the age of 60 to a very caring, loving, understanding, man. Eventually we want to go to Egypt on our honeymoon.
Life goes on. You accept your disease, and live.
This is my story and maybe you are able to relate to what I am going through. May God bless you and your family.