It can be a lot to manage two children with cystic fibrosis who have other health issues. I made it work by making my children responsible for their own treatments and not sweating the small stuff when we can't be perfect.
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Because my daughter's bowel perforated when she was a newborn, she needed to have surgery to temporarily reroute her stool so that it was collected through her abdomen into an ostomy bag. Those grueling days of ostomy care -- sometimes as often as every hour day and night -- were some of the darkest days of our cystic fibrosis journey.
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.
I struggled when I learned that in addition to cystic fibrosis, my daughter also had adrenal insufficiency. I felt anger, sadness, and anxiety. But thankfully, with the support of my husband, family, friends, and care team, we learned how to manage her condition and deal with emergencies.
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.
Although I didn't have cystic fibrosis-related diabetes, I avoided dealing with my blood sugars. Now that I do, I feel stronger physically and emotionally.
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.
I have seen tremendous health gains since starting Trikafta. But control of my cystic fibrosis-related diabetes has been elusive.