My name is Kelsey Lett and I am 23 years old. From a young age I was always sick. My parents didn’t know why I was such a fussy, cranky baby. Finally my family doctor ordered some tests to see why I was malnourished and coughing so much. After 2 years of testing, a sweat test revealed that I had cystic fibrosis.
For those who don’t know, cystic fibrosis (CF) is a genetic disease that affects the lungs and digestive system. It causes thick mucus to stick to my lungs and makes it easy for bacteria to grow there. Inside the pancreas, thick mucus blocks the ducts which usually transport critical enzymes to the intestines to digest food. The body cannot absorb and metabolize nutrients properly, especially fats. People with CF can quickly become emptied of salts, which leads to fatigue, weakness, fever, muscle cramps, stomach pain, vomiting, dehydration, and heatstroke.
I am more than my illness
Despite knowing all this about me, I want you to remember that I am not my illness. As much as I try to not let it define me though, cystic fibrosis is still a huge part of my story. I’ve had over 30 surgeries since the age of 2. I’ve learned to deal with death more than the average young adult. I’ve also met a lot of great and not so great people in our health care system.
Being an adult with CF is very different than being a child with CF. You have more responsibilities. You are forced to grow up. For example, I became eligible for hospital services (e.g. receiving IV meds) in my home after I turned 18. As I received home care more often, I started to educate myself about the services that were offered. This is where the Champlain Community Care Access Centre (CCAC) comes in.
It’s about shifting the culture
Last year I joined the Champlain CCAC’s Patient and Caregiver Council because I wanted to help improve everyone’s home care experience. I was also recently offered an amazing opportunity to become the organization’s first Patient Engagement Advisor. At 23 years old, I already have so much knowledge about the health care system and how it runs. I feel that Champlain CCAC staff really listen to what I have to say and we have been working together to improve services for patients and families.
Over the coming months, I look forward to sharing my stories and thoughts on how to make the health system more patient-centered with you, readers of the Champlain Primary Care Digest. Stay tuned!