I made it onto the transplant list after first being rejected. After 18 months of waiting, I got the call that my new lungs were waiting for me.
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I did the research. I asked the questions. I thought I knew what to expect when I had a double-lung transplant. I was surprised by what I learned.
Because transplant is such a complex process, most transplant centers require that candidates gather the necessary social support to help navigate the transplant process.
Halloween, April Fools' Day, and Mother's Day may be average American holidays for most, but for me, they mark three important days in my long, emotional journey toward a new pair of lungs.
Yesterday, the U.S. Department of Health and Human Services finalized a rule expanding short-term, limited-duration insurance plans -- threatening access to adequate, affordable coverage for people with cystic fibrosis who rely on the individual marketplace.
On Friday, a federal judge issued a decision in Texas v. United States, finding the Affordable Care Act to be unconstitutional. This decision could ultimately leave people with pre-existing conditions, like cystic fibrosis, without patient protections while also jeopardizing access to adequate, affordable health care coverage.
The Cystic Fibrosis Foundation has followed the health care reform discussion closely. While the Foundation has not taken a position on any particular health reform bill, we have consistently and aggressively encouraged officials to include specific reforms that are important for the treatment of cystic fibrosis.
After my transplant team said I was too sick to undergo a double-lung transplant, I was determined to get well enough so that I could.