Cystic fibrosis is a disease we hear about so often, but the patients and their families are so unique and have their own story each and every time.
I remember meeting one patient who had already had a lung transplant. They were a little older and more or less understood the course of their disease.
I was there with the team and my attending who has a really good way of interacting with patients asked what this patient wanted to become when they grew up. They said they wanted to do something that didn't take a lot of time to be good at, or that required a lot of studying. I don't know if that's because they were aware of the lifespan of a typical CF patient, or it was just a standard kid answer.
My attending wanted them to reach their potential, aim for a high goal. We had some good jokes and a good laugh, especially the time when my attending said about the team "We're all nerds here! We've been in school forever."
Just because someone has a chronic disease that shortens their life span doesn't mean they shouldn't be encouraged to pursue something that requires a lot of work. Who knows how they could change the world.
I had another younger patient who I was consulted for, a problem besides cystic fibrosis. They were really animated, ready to get out of the hospital, and eager to play with any visitors or medical teammates. I think about this patient a lot, and how they're doing at this point in time. I think about the future of these patients pretty often, and I keep wishing them the best.
I was once on another pediatric rotation when this same patient ran up to me, gave me a friendly punch in the arm and said "Hey you!" while running off. It pretty much made my day.
Hopefully there continues to be better and better treatment for cystic fibrosis, and maybe even a cure some day. If you haven't met a patient with cystic fibrosis yet, it will change your life.
I remember a patient. Jonathan. He had CF. Met him on one of my pediatric rotations, at the public hospital in Honduras. He was 6 years old, her mother had already lost a son at a very young age, we asumed probably from the same disease because of what she told us. Where I live, there are no options of definitive treatment for these kind of disease. He was later discharged. Never saw him again. Then 2 years later, while I was in what we call a "brigada" ( which is somehting like when you go to a town, and take doctors and medicines for poor people who can't afford getting medical help in the city) I heard someone calling "doctora, doctora" and I turn around and it was Jonathan's mother smiling saying how nice is to see me again, I instantly recognize her and ask her about Jonathan, she then gets watery eyes, and I just, I hugged her, she didn't have to say anything. I tell her how sorry I am. And she says " Ya está descansando" which means. He is finally resting.
ReplyDeleteHe did changed my life