My name is Camille Frede, daughter of Nancy and Eric Frede. At just four years of age, I was diagnosed with pulmonary hypertension (PH), a disease that causes high pressures in the lungs preventing someone like me from breathing in enough oxygen and, as a result, I have a slightly blue complexion. Now, at the age of 28, doctors have told me my options have run out and I need a lifesaving heart/lung transplant! It has been a long and difficult journey and I need your help.
My parents and I were told by the doctors in our hometown of Grand Rapids and by those at the University of Michigan that I would eventually die from this disease. My parents, seeking help, went to see a doctor who was at Columbia Presbyterian Hospital in New York, who was pioneering new treatments for PH, a drug that needed to be delivered through a central line directly into my heart. The central line came as a packaged deal that also included a huge pump that I would have to carry. It allowed me to do things that I love; lay out in the sun, go to Lake Michigan for the day or just do anything but stay inside. However, my family and I knew that this drug that had allowed me this time was not stopping the disease progression but stalling it.
After graduating from high school, I went on to study to be a nurse. I knew that my personal experience would allow me to accelerate in the program and that I would be very comfortable in the hospital setting. After all I have spent half my life in one. I went through college with minimal hospitalizations or complications. My PH finally felt controlled. I could do most everything like a regular person. I forged ahead, so fulfilled in my job as a nurse, and decided to pursue my Nurse Practitioner degree. It was then that I noticed something felt off. I would lose my breath, feel flush more often, and had a hard time doing everyday chores. My health was declining and this time there was no medication that the doctors could prescribe to save me from needing a heart/lung transplant.
The cost of transplantation is astronomical and because my medical care is in a state other than where my family lives, we will be burdened with the costs of travel, relocation and food. Insurance will cover most of the hospital cost and the lifelong anti-rejection medications however, I’m not permitted to return to work for a whole year to protect my new lungs and heart from infections, to go to doctors’ appointments, and participate in pulmonary rehab. My family and I have reached a point where we can no longer manage the cost of my medical care on our own. Your help is needed for this long and tiresome battle to end successfully.
To help with this financial burden of uninsured expenses, a fundraising campaign has been established in my honor with Help Hope Live, a trusted nonprofit organization that has been providing community-based fundraising guidance to help patients and families in need for over 30 years. All donations are tax deductible to the full extent allowed by law and are held by Help Hope Live in the Great Lakes Heart/Lung Transplant Fund in honor of Camille Frede. Donations are allocated by Help Hope Live based on financial need for medical expenses. Please consider making a contribution today.
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Having a new heart and lungs will cure me so that I may live a better life, give back as a nurse, and eventually become a nurse practitioner. Please, help me so that I may one day help and save others, maybe even you.
With sincere gratitude,
Camille Frede
