I am reaching out to you for help for my wife Katie Prager, she is 24 years old and the love of my life. She has a heart of gold and helps anyone in need, no matter the cost.
Unfortunately, I need anyone and everyone to help me spread our story nationwide; to gain the attention and financial support needed to save her life.
Both my wife and I have Cystic Fibrosis. For those that don’t know, the average age for someone that makes it to adulthood is 37 years old. Cystic Fibrosis is a chronic illness that produces thick mucus in the body, especially in the lungs and makes it hard to breathe. Most CF patients end up getting a lung transplant to stay alive.
Katie and I met in August of 2009 through mutual CF friends over facebook. She had seen where I was in the hospital and messaged me to make sure I was okay. There aren't too many people like her! After that message we never stopped talking. I am sure many people thought we moved too fast, however we didn't feel those rules applied to us. Living with a chronic illness forces you to grow up faster than anyone should, so we knew time wasn't in our favor. After a month of talking on the phone, we decided to meet in person and that's where our love story began.
In September 2009, Katie was diagnosed with an infection in her lungs called Burkholderia Cepacia. This diagnosis led her life into a downward spiral forcing her to spend more time in the hospital. In January 2010, Katie moved to Missouri to go to school and so we could live closer to one another. Again, not wasting time, Katie and I became engaged in February, 2010. We were both on cloud 9 and were ready to move forward with our lives together. Sadly, with each subsequent doctor visit, both of our health steadily declined. Finally, on July 16, 2011, Katie and I became husband and wife, surrounded by our families, friends, and our puppy Marley.
In May 2012, we moved to Kentucky to be closer to Katie's family. We took our CF care to UK Clinic. We were told that because we both had Cepacia, if it came down to it, we wouldn't be able to get lung transplants there because of our Cepacia diagnosis. The situation surrounding our health kept getting worse as each day went by and we were ultimately forced to quit work just to focus on taking care of ourselves. We transferred our care to the University of Cincinnati and were told that they couldn't help us there either. In February 2013, we were both put on oxygen full time and started pulmonary rehab. After both of us were put on oxygen, we knew something had to change. It's not fun being 22 and needing oxygen to live your daily life.
There are only two places in the U.S that will transplant Cepacia patients, the University of Pittsburgh and Duke. In April 2013, together we began our evaluation to see if we were candidates for lung transplants. After two long months we had both been approved to put on the transplant list. The next several months proved to be very difficult. Our dependence on oxygen increased as our quality of life decreased. In August 2014, we were admitted to UPMC for what would prove to be our longest stay to date. After waiting way too long, I got the call for new lungs on November 16, 2014! I had made it by the skin of my teeth, but I made it nonetheless. When I woke up, Katie wasn’t there. She couldn’t be. And she still isn't. Since I have to take immunosuppressant medication, we won’t be able to be anywhere near one another until she can get a lung transplant too. We can only communicate through phones or computers. While I have been growing stronger, Katie has been met with not only round the clock IV medications; hospital visits, growing weak and sicker but insurance red tape and bureaucracy.
On December 6, Katie was discharged from the hospital and returned to Kentucky. Within 3 days she started feeling bad again, but was told she couldn't return to UPMC because Medicare would not pay. She was told that she had used her lifetime maximum and it would only reset if she could be out of the hospital for 60 consecutive days. Sixty days out of the hospital is not an option for her anymore. Medicaid is also not an option as it will not cover her transplant due to UPMC being "out of network". After explaining to Medicaid and Pittsburgh that there are only two places in the country, who would operate, due to Cepacia, (UPMC and Duke), they still refused to work together to help her. She is struggling to attempt to negotiate her healthcare options from her hospital bed at the University of Kentucky.
A few weeks ago, I was finally discharged from UPMC with my new lungs and new life! This was a bitter sweet day for me. Katie should have been able to be there with me! Instead she is being told by hospitals and insurance companies that she is wasting her energy working on funding her own transplant. The only way she will get to leave UK’s Hospital is to go home with no answers and unsure if she will make it to her next doctor’s appointment or somehow, by some miracle, Pittsburgh and the insurance company will decide to help her.
They are turning my wife into a number, a statistic, a dollar sign. I cannot lose her! This can’t be the end of our love story! We are both ready to continue fighting but at this point we are running out of options and need your help. Please help me save my wife Katie!