My CTEPH Diagnosis: Angela Kerber
It was May 2018 and I had just turned 49. Our cold Colorado spring was quickly turning into a beautiful summer and I was certain to get into my best shape yet. I was hiking with my son when I became extremely short of breath. After several episodes of shortness of breath, we decided to turn around and go home.
When we arrived home, I felt like I was suffocating and decided that my husband should take me to Urgent Care (thinking nothing was wrong). Urgent care did some blood work and a chest x-ray and with those results, they had me transported to the closest hospital. I had five pulmonary emboli. To date, we still don’t know the reason I got the emboli. I was in the hospital for four days.
Some of the emboli dissolved while others didn’t. I continued to have shortness of breath and difficulty with simple tasks, like going up a flight of stairs or taking a slow walk. By December of 2018 my pulmonologist ordered additional testing to look for other reasons why I was continually having shortness of breath. In tandem, I also made an appointment with a group that specializes in pulmonary hypertension in Denver.
The appointment was scheduled for March of 2019 and I was ready with all my questions in hand. I went for my appointment that day in March and the specialty practice had booked me with the wrong doctor in the wrong practice. I was left no option but to reschedule and this time it was for the end of May. Based on the tests I had done in December, the specialty practice wanted me to have a right heart catheterization before my May appointment.
I got pneumonia in April of 2019 and was hospitalized for five days. Because of this and a couple other factors, the heart cath didn’t happen, and I had to reschedule my May appointment. We were traveling for two weeks in June so I scheduled the appointment for July. When we got back from our travels at the end of June, I was gravely ill. I had pneumonia, h-influenza and septic shock. After they worked on me for hours in the emergency department, they moved me to the ICU. After nine days in the hospital, I miraculously got to go home.
About nine weeks after being septic, I had the right heart cath. I was then diagnosed by the specialty practice with having exercise induced pulmonary hypertension. Unfortunately the specialty practice completely dropped the ball on my case. On September 30, 2019 I began my search for a new pulmonary hypertension specialist and was very fortunate to find an amazing doctor, get all the needed testing and receive a diagnosis of chronic thromboembolic pulmonary hypertension (CTEPH) on October 28, 2019. I’m hopeful to start on a medication soon as well as be considered for pulmonary thromboendarterectomy (PTE) surgery.
From finances to health, life has turned upside down for me in the past 18 months, but I’m a survivor. With the financial pressures mounting at a time when traveling to my doctors appointments is a priority, I’ve found the Team PHenomenal Hope Unmet Needs Patient Impact Fund to be so helpful!
Angela 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.