Learning to Deal With a Chronic Illness

“I am 57 years old and was diagnosed last November at the University of Kansas (KU MED) Hospital in Kansas City with CTEPH after a large blood clot was found in my right kidney. I had been experiencing increasing shortness of breath doing any physical activity–especially climbing stairs or inclines and bending over. At times I thought I was going to pass out. I mentioned this to my primary care physician who immediately scheduled me for a chemical stress test. I failed the stress test but before any follow up could be done I ended up at our local hospital with excruciating pain in my lower right abdomen. A right heart catheter was done where my cardiologist discovered a hole in my right heart.

“I was sent by ambulance to KU MED Hospital. During my six-day stay, they performed a variety of tests, including a VScan (ultrasound) and a right-heart cath. When the pulmonology team met with my husband and me and tried to explain CTEPH, I simply broke down. It was too much to take in. It was scary. Dr. Satterwhite explained that I would probably need PTE surgery. He also explained that I was in right-heart failure.

“After another six-day stay at KU MED Hospital, arrangements were made for me to go to Temple University Hospital in Philadelphia for the PTE surgery. We went last month for two weeks. After two more days of tests, including left- and right-heart catheterizations and a lung angioplasty, we were devastated with the news that I was not a candidate for PTE surgery. However, they did do two extensive BPAs — balloon pulmonary angioplasty. Dr. Bashir was able to address around 20 blood clots. He also opened two quadrants of my lungs. They said I should really notice a difference in two-to-three months. I will need to have more BPAS done. I also need to be on oxygen at night or when napping.

“The financial drain has been enormous. My husband is self employed as a mechanic and has had to shut his shop down twice. I work at a local elementary school and am hoping to be released to go back to work next week on a limited basis. My husband and I are working-class people. We could not have gone to Temple University Hospital without the support of our family, friends, church and work places. We are humbled and eternally grateful for all of the assistance we received.

“We really haven’t had the time to fully digest what it means to deal with a chronic illness for which there isn’t a 100 percent cure. I am on a very expensive pulmonary hypertension medicine and a blood thinner. For life. I am trying to live my best life in a limited way. I do already feel somewhat better after two BPAs. I am not looking forward to more of them or all the tests that I will have to do every year. It’s kind of depressing. But, we just keep on keeping on and try to live in the moment.”