Patient
We had a poor experience with IU lung transplant center. My mom was initially diagnosed with chronic lung rejection 4 years after her bilateral lung transplant. After she had complaint of a severe cough for months. When she started to become symptomatic she requested photophoresis a treatment used to treat chronic rejection she was initially told her insurance wouldn't cover it. She contacted a patient advocate at the hospital and it was approved within weeks. We had many hospital stays and several ICU stays due to in my opinion their delay in treating her many lung infections. There never was a sense of urgency despite her receiving immunocompromised medications which of course affected how her body was able to fight off each infection.There only suggestions were to do brochoscopy's that rarely gave any information regarding the specific virus or bacteria that was causing her infection at the time. My mother had to be her own advocate on many occasions and I truly believe it was that and God that kept her for the 14 years she had the lung transplant. I believe her concerns weren't met with the urgency it deserved over the years due to her being African American. I hope by posting this I can draw light to the racial injustices that exist within the healthcare system.