I didn't know until date four that my future wife had cystic fibrosis and was a lung transplant recipient. She was too wonderful for me to care.
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While you are grinding through a seemingly never-ending cycle of cystic fibrosis treatments, it also can be helpful to engage in self-care activities that bring you happiness. This nurturing routine can help you keep perspective and remind you of why you are undergoing all these treatments in the first place.
When I met my husband, who has cystic fibrosis, he was listed for a double-lung transplant. I thought I was prepared for that. I wasn't.
In the summer months, some things require special attention for people with cystic fibrosis.
Although they have been full of physical and emotional challenges, as well as life interruptions, multiple transplants have helped me become the person I am.
For a time, I did not always do my daily cystic fibrosis treatments. Over time, I've come to see them as a necessary part of my daily routine.
Although I resisted it at first -- and wrestled with what it said about my worth as a person -- going on disability has helped me become healthier, happier, and more fulfilled than I was when I was working.
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.