PH Secondary to Sarcoidosis: Tiffany Mullings
First and foremost I would like to give honor to God for he is the light of my life and my strength when I am weak. It all started in 2011 when I was diagnosed with sarcoidosis, which attacks one or more of your organs. It attacked my lungs. It can be a very tricky disease.
At the time there were only a few facts known about this disease. It is not contagious, possibly hereditary, inflammatory, and progressive. That is how the doctor explained it to me. I was handed pamphlets to read. At this time I was really discouraged because I knew very little about the disease. Also, I had known of a couple of famous people that were diagnosed with sarcoidosis and are no longer with us.
As time went on I had little to zero complications for seven years. However, in 2017 I caught pneumonia in both of my upper superior lubes. It was horrible! I was hospitalized, but thought everything would go back to normal afterward. After I was released, I continued my daily activities, but something was off. I couldn’t catch my breath and I was always tired. If I walked 100 feet, it would feel like I ran 1000 feet.
I then noticed my ankles were swelling. I went back to the doctor. My oxygen level was 87 and my heart rate was 132. I was seconds away from a heart attack, stroke, or death. Needless to say I was admitted to the hospital. While I was there I was placed on oxygen and told that I had congestive heart failure. Eventually that was ruled out. I was given a right heart catheterization, echocardiogram, and a few other tests. I was then diagnosed with pulmonary hypertension.
Since that very moment I have been on oxygen therapy. It has now been two years and five months. I receive aggressive treatment to slow down the progression of this disease. As you can tell, this has been a journey. I am working through my diagnosis with the strength God has given me as his child. He has led me to the remarkable doctors and nurses I have that take very good care of me at Loyola University.
I wouldn’t be truthful if I didn’t say that it is very hard sometimes, and each day is different. Some days I feel as if I can run a marathon and others I feel I can’t walk to the kitchen or restroom without careful consideration. My thing has been to not overwork my heart, causing stress. I have recently started a more aggressive medication for my PH. It is titrated and I have not reached my goal dosage yet. However I am very hopeful that it will make a difference. I have also started another medication that helps to lower my heart rate. This has all been a very drastic change for me and something that I could never have imagined happening. Especially at my age. I’m only 40 years old. I just know that the best thing about being down is there is only one way to go, and that is UP!
Tiffany received COVID-19 relief funds from the Team PHenomenal Hope Unmet Needs Patient Impact Fund. Learn more about how this fund supports PH patients at teamph.org/unmetneeds.