Thriving With Cystic Fibrosis

🎙️ 40 medications a day. Weeks in the hospital. And still, a mindset built around passion, purpose, and forward motion.

That's what makes our conversation with Nicholas Kelly stick.

He's a registered dietitian living with cystic fibrosis, bringing both professional expertise and lived experience to what it really takes to move from surviving to thriving with a chronic illness.

In this episode:

🔹 What CF actually is: the thick mucus, lung damage over time, and ripple effects on the GI system, mental health, sexual health & more
🔹 How a major surgery forced Nicholas into a long recovery, and why "not looking sick" is its own battle with invisible illness
🔹 The misconceptions around "noncompliance," and why struggling often means under-supported, not uncommitted
🔹 His daily medication routine for staying consistent with a heavy treatment load
🔹 The nutrition line worth replaying: "nutrition is a science, food is an opinion"
🔹 Why there's no such thing as a cheat day, and how to build balance without shame

If you're navigating cystic fibrosis, supporting someone with chronic illness, or just building better habits with a clearer mindset, this one will leave you with a stronger framework and a lot more hope. 💛

🎧 Listen now, link in bio
💬 Share this with someone who needs it, and tell us in the comments: what does "thriving" mean to you?

📍 Follow Nicholas: NicholasKellyRD.com
📱 IG/socials: @NicholasKellyRD
✉️ Email: NicholasKellyRD@gmail.com

Transcript

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Coffee Pick And Guest Welcome

SPEAKER_00 0:00

Hey y'all, hey, it's your girl Paula with another exciting episode of Coffee Chit Chat. But you know how we do it. We're gonna shout out the Coffee of the Week. And this week it's a vanilla macadamia nut. So make sure you try one. Today's guest brings a unique blend of professional expertise and personal experience. As a registered dietitian living with cystic fibrosis, he has dedicated his life to helping others turn challenges into strength. With more than 85 speaking engagements, a TED Talk and advocacy work before the FDA, he empowers people to move from surviving to thriving through nutrition, mindset, and intentional daily choices. So welcome, welcome, Nicholas. We're so happy to have you on Coffee Chit Chat.

SPEAKER_01 0:47

Thank you, thank you. I'm so happy to be here. I really appreciate it. So, what inspired you to become a dietitian while living with cystic microsis?

The Twist That Made Him A Dietitian

SPEAKER_01 0:56

So, actually, what became a dietitian is actually a funny story. So I originally went to college for computer technology. I wanted to build the biometric standards the FBI uses. So the year I got there, though, they got rid of the program, they put it in computer science. And I've coded in like five different languages. I hate them all. I'm not built for computer science. So my twin sister also went to Bowling Green at the same time. And she was a nursing major. So she was taking this nutrition course and she goes, Nick, will you take the class with me? I said, Absolutely not. I have no interest. She comes back a couple days later and goes, Oh, I saw some of our friends are taking it. Will you take it now? I was like, Oh no, you won't be alone. I'm not. And so she came back and said, Okay, I'll make you a deal. If you take the class, I'll do your out-of-class assignments and your homework. All you gotta do is do your in-class stuff. And I'm like, all right, let's draft it up. And I was like, I'll be there in class the next day. So I went to class the next day, and the professional name was Dr. Jillian Wilford, Dr. Joe. And he wasn't a dietitian, but the way he talked about nutrition was the greatest puzzle I had ever heard. So I remember sitting there, I walked out of class, called my mom, said, Mom, how do you feel if I was a dietitian? I changed my major the next day. Goodness, that is a very interesting and funny story. Yep. The irony of it all, my sister hated the class so much I ended up doing her work. Oh my goodness.

SPEAKER_00 2:23

And she asked you to come join her, right?

SPEAKER_01 2:26

Yep.

SPEAKER_00 2:27

Oh wow. So how has your diagnosis shaped the way you approach health and nutrition?

SPEAKER_01 2:34

I really try to do everything I can to make realistic expectations for my patients and blend that patient experience into understanding what they need and how to communicate.

SPEAKER_00 2:49

Okay. I love that. Love that. So, what's one lesson cystic fibrosis has taught you about resilience?

SPEAKER_01 3:00

CF is a beast, and I have so many stories, but really one of those is I had surgery now 11 years ago, and that surgery ended up causing me a lot of health issues, and having to bounce back from that and learn how to like walk successfully, learn how to take care of myself successfully. That was a grind that I never thought I'd have to do, but I really had to make it happen. There was no other choice for me. So that ability to bounce back was the resiliency that this disease has kind of put me through.

SPEAKER_00 3:41

Oh wow. Oh, and you just said you have to learn how to walk.

What Cystic Fibrosis Really Does

SPEAKER_00 3:45

So does this disease maybe we should just kind of back that kind of like give us a background on what exactly is cystic fibrosis?

SPEAKER_01 3:52

So stick cystic fibrosis is a genetic disorder that primarily affects the lungs, pancreas, and GI system. What they don't tell you it affects everything else from everything from your mental to your sexual health and your other organs. So what happens is this thick, sticky mucus builds up in the body, and in the lungs, it plugs up different airwaves, causing bacteria to grow on top of it. That bacteria causes scarring, and over time, that's how you lose air uh lung function, which ultimately makes it terminal.

SPEAKER_00 4:28

My goodness. I didn't realize it was that that's very detrimental. And you said like you had the surgery like 11 years ago, so it seems like you're doing pretty good with the um the chronic or terminal illness.

SPEAKER_01 4:39

I I have, I really thrive on being able to be healthy and you know strive for normalcy. I really am uh a huge advocate of that, and that's even with the fact that I spend about a third of my year in the hospital.

SPEAKER_00 4:54

Wow.

SPEAKER_01 4:54

And no, most people don't wouldn't never guess that I spend our average length of stay is 31 days. Really? No, you look like a healthy young man. And and that's the key. Look, you know, that I am, you know, that more than meets the eye. Because we everyone in this uh has an idea of what sick looks like. People understand what the idea of okay, this person looks sick. And so when you don't follow that platform, you don't get the courtesies that other people look sick get. And so for me, I've always strived on never being looked at as sickly.

SPEAKER_00 5:27

Okay, and I see because most people think that you have to look a certain way to say that, hey, I'm I'm living with this chronic illness, guys. I get

Grief Into Healing Through Storytelling

SPEAKER_00 5:38

it. And when did you realize your personal story could help others?

SPEAKER_01 5:43

So it's was so what happened was my sister passed away when I was 25. And she would always tell me, Nick, tell your story, you could really help somebody, Nick, tell your story. And I was like, No, I have no interest in that. She was like, Nick, you can tell your story, you can make a difference. And I said, Yeah, no interest. And so when she passed, I was so broken that I start telling our story is a way to heal. And it's uh it's so funny because she would always tell me, Nick, tell your story, you could really help somebody. I just never knew it'd be the one, I'd be the one that was helping.

SPEAKER_00 6:18

Oh my goodness. And she was, and this is your twin sister. No, no, it was one of my sisters, uh, someone else. Okay, another sibling, okay. Oh wow, and you were only 25. I know that that's pretty tough. Yeah, but a lot of times um she probably was correct, you know. When you share something that has happened to you, someone else may be going through that same, you know, um illness or maybe another illness. And it's like, hey, if he can, you know, bounce back and have all this resilience, maybe I can do the same.

SPEAKER_01 6:51

So I'm kind of happy she encouraged you to share your story. And and that's yeah, I always tell people, I joke and tell people like if she thought painting would help, I might be Picasso right now. Oh goodness.

SPEAKER_00 7:04

So what um is a common misconception? I think we kind of like touched on it a little bit, people have about living with a chronic illness.

SPEAKER_01 7:13

I think one of the big misconceptions that people don't want to be healthy. You know, we talk about, especially clinicians, we have this idea of what noncompliance looks like. And sometimes it's just the lack of information or it's a lack of control over your environment. So the one thing you have control over, you try to take it, you try to take it and run with it. That may not always be the healthiest steps, but it is one of the things that really happen. And so I think one of the things that people just need to understand there's a lot of grace that needs to be given with someone with chronic illness because it's a tough battle. Everyone's going through something, I you know, and I know that, and I tell people all the time, we all have our trials and tribulations. So just be just be kind to those because those invisible diseases or those things that we can't see are just as trying.

SPEAKER_00 8:01

That that is just you're right. Like, and you said it's invisible because a lot of times if you're not looking a certain way, people don't even know what you're going through. Just be kind. Yep, yep, in a world where you can be so many things. Can we just be kind to all? Because we never know, you know, what someone else is going

A Medication Routine That Works

SPEAKER_00 8:18

through. And can you shape a small um can you share a small daily habit that has made a big difference in your life?

SPEAKER_01 8:27

I always tell people, especially with kind of disease or any medical condition, is have a routine, put a routine in place, it'll really help. For me, I have a drawstring book bag with all my medication. Every morning, I dump out the medications on whatever table couch, and I individually open them and put in my hand, and I count them and look at the shape. That way, if ever I'm missing a shape or a number, I know I'm either need to refill a medication. I forgot to take a medication, and I do that morning and night. And so I put the meds back in the bag, you know, and then at night, dump the bag out again. So that makes sure that I'm taking my medication because now I have this active system in place to make sure I'm on top of my medication because I'm responsible for 40 40 medications a day.

SPEAKER_00 9:18

Oh my seriously, seriously, 40. Is this like 20 in the day and then 20 at night or throughout the day?

SPEAKER_01 9:28

So it's usually it's like what is it? Is 15 plus another it's like 21 in the morning, um eight, eight, six, that's 14, 14 at night, so that's 35, and then like five throughout the day. Oh my goodness.

SPEAKER_00 9:54

That's a lot because I know I'll probably like going crazy, like, oh my goodness, did I do this? Did I do that? So that's a pretty good routine to just dump them out, look at the shapes, like, okay, did I get everything?

SPEAKER_01 10:05

That's right. You got you gotta find a way, whatever works for you. But I do tell people getting a routine is gonna be huge.

SPEAKER_00 10:14

Oh my goodness, that is a lot, and um, but I love it because it's like you're just talking to me, like you know, this is just part of life, and I'm gonna continue to move forward, and so and it probably brings us straight to the next

Thriving Mindset And TEDx Lessons

SPEAKER_00 10:29

question. What does thriving, not just surviving, mean to you?

SPEAKER_01 10:34

Thriving is living with passion, finding passion and then utilizing purpose. Thriving is being able to overcome your situation and find the good in your life. Thriving is about taking steps towards something better and building legacy despite your trials and tribulations. That's thriving.

SPEAKER_00 10:54

Okay, and so you need to thrive and not just survive because some people could just take it like um getting up this morning, yeah. Well, these appeals, and I'm not gonna do anything. But I mean, like for you to take time out your day to chat with us, that's thriving.

SPEAKER_01 11:08

So being able to share my expertise and my knowledge, and you know, that's something that's really important to me, showcasing my passion.

SPEAKER_00 11:16

I love that, and especially you um um in your bio, you shared um that you did TED Talks. How was that?

SPEAKER_01 11:26

It was doing a TEDx was a crazy experience for me. I actually wrote it a year before I actually got one because I was so confident I was gonna get one.

SPEAKER_00 11:35

Okay, okay.

SPEAKER_01 11:36

And when I got it, you know, it's a it's a long, grueling process. They go through speaking coaches, you have to rewrite your speech a bunch of times, but really being able to be up there for those 10 minutes, it feels like the longest 10 minutes ever while also feeling like the quickest 10 minutes ever.

SPEAKER_00 11:52

Oh wow, and you said you wrote it before you even knew you were gonna have one because you were manifesting, right? Yeah, I I wrote it a year before I ever got one. Oh wow, that is awesome. Y'all hear that chit chatter. So even though you may not know if a certain situation is gonna uh work out for you, just go ahead and manifest it. He did it a whole year and voila. Awesome, awesome. How important is mindset when facing health challenges?

SPEAKER_01 12:21

Mindset is everything, and that's not just a health, that's everything. Your mentality and how you approach things is everything, it's the most important thing. When you become mindful of situations, you are able to attack them in such a different way, you're able to control them in such a different way, you're able to get peace from them in such a different way. So your mentality, your mindfulness is the most important thing.

SPEAKER_00 12:45

Um, I like that you said that because so many times, you know, we always often hear a lot speakers say it's the battle of the mind, you know, it's the battle of the mind. So we have that clear mindset that can help us get through all types of danger, health, or whatever it is, just having a good mindset. I like that.

Nutrition Truths And Passion Advice

SPEAKER_00 13:06

And how uh what one piece of nutrition advice, because you are a dietitian, uh, could everyone benefit from I think the one piece of advice everyone can benefit from is nutrition is a science, food is an opinion.

SPEAKER_01 13:29

So understanding that there is a science to nutrition and there is an opinion. The opinion is on what you choose to eat, but nutrition is a science, and you know, when you look at all these people out there and all these experts, you know, just be mindful of you know, understanding. And I also tell people, you know, for those people working out and understanding, like, there's no such thing as a cheat day, you can't cheat on food. There's also no bad foods or no good foods, there's healthy foods and less healthy options. So just reframing your mind state to understand food is meant to be enjoyed, but you find that balance and really make more healthy choices than unhealthy choices, and you're in a good space.

SPEAKER_00 14:12

It's interesting that you would say that everybody's like, oh, I'm just gonna have a cheat day today. I'm gonna eat my fries, I'm gonna have a milkshake, you know. He says no such thing as bad and good food, but it's just making a good choice about the food that you're eating.

SPEAKER_01 14:28

Absolutely, those are healthy and unhealthy options.

SPEAKER_00 14:33

Okay, I like that. And what do you hope audience take away from hearing your story?

SPEAKER_01 14:41

So there's two things for me personally. I always want anyone to take away that Nick lived with passion. And that's the most important thing to me. As I build my legacy, my legacy is built on passion, and I think that's important. If you take nothing away from Nick, no, he lived with passion. And the most important thing I take, what I want people to understand is passion is the single most important quality a person can have. Finding passion expands to every area of your life, it just not isolate it to one. Because when you find passion, it allows you to utilize purpose, which to me is the external display of passion and increases productivity. And when I say productivity, that doesn't just have to be the bottom line. That means you become more useful, you become more active, you become more helpful. That's what it does, and so that's the most important thing. Okay, so that passion, having a passion for life, having a having a passion for anything. Passion is that the burning desire, that that desire, that internal flame. So it can be a passion for your work, it can be a passion for things inside of your job, it can be a passion for speaking, passion for the arts, or passion for a specific thing. Those, whatever your passion might be, and then how you showcase it is what purpose is.

SPEAKER_00 16:00

I love that. And for some of us uh who might be living with uh, I'm gonna call it CF as well. Um, what advice would you give them?

SPEAKER_01 16:10

To my fellow CF warriors, I tell them, keep your head up. We are making strides in the right direction, and we are on the precipice of something great, but while you still grind, it's still a mentality. You know, we we have to be able to support each other, find a community, and that's for anybody when they when they're going through something. Be educated, find your community, and advocate for yourself.

SPEAKER_00 16:38

Oh, I love that that community. Um, Nicholas, we really appreciate you sharing your story and it's just giving us a little insight on the uh CF because I've never really met anyone who's living with that uh chronic illness. So it was just so um uh enlightening to hear your story.

Where To Follow And Closing Quote

SPEAKER_00 16:57

And now I'm gonna tell my um listeners how can they follow you?

SPEAKER_01 17:03

So I'm able to be followed at Nicholas Kelly R D. So Nicholas Kelly K-E-L-O-Y, R is in register, D is in dietitian.com. You can also find me on all my socials at Nicholas Kelly R D. And you can also email me at Nicholas Kelly R D at gmail.com. So if you guys didn't see, there's a pattern there. Nicholas Kelly R D is how you get a hold of Nick.

SPEAKER_00 17:29

Okay, Nicholas Kelly R D, let's go. All right, and Chit Chat is going to make sure we put it on all our social media sites so you guys can follow him and follow his very inspiring story. Um, so we just definitely appreciate you for taking time out your busy schedule to chat with Coffee Chit Chat. And quote of the week is by James Baldwin. Not everything that is faced can be changed, but nothing can be changed until it is faced. Tune in next week for another exciting episode of Coffee Chit Chat.