In a complex and rapidly changing health care system, we support policies that promote adequate, affordable health coverage so people living with cystic fibrosis can receive the high-quality, specialized care they need to live longer, healthier lives.
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Deciding to get on the double-lung transplant waiting list was a very difficult decision, emotionally. I was lucky my care team recommended early referral. It gave me the time to process my emotions about transplant and make an educated decision.
Since starting the transplant journey, I have learned many things, run into many roadblocks, and been left shocked by other issues.
After my social media post went viral, I finally found my lung donor's family. The emotional meeting with them brought a confusing mix of happiness, grief, gratitude, and survivor's guilt. I received lungs because my donor was killed in a shooting.
Although I went through a lung transplant evaluation, I decided not to be listed.
Because of the medications I must take as a result of my lung transplant, I thought it might be too difficult to conceive a baby through in vitro fertilization. I was wrong. I'm expecting a son in November.
After discussing it with my family and giving it a lot of thought, I decided not to pursue a lung transplant.
My relationship with the idea of a lung transplant has changed over time. Although I'm approved for transplant now, it is a complicated process with a full range of emotions. Here's what I learned along the way.
Preparing to be listed for lung transplant taught me a great deal about what to expect during the transplant process and helped me form bonds with others going through the process with me.
Today, the Supreme Court decided to uphold the Affordable Care Act, allowing individuals who purchase health insurance on exchanges to continue receiving premium subsidies.