Latest / The Seed Project / Beyond the Diagnosis: A Cystic Fibrosis Hero Living Life to the Fullest

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Beyond the Diagnosis: A Cystic Fibrosis Hero Living Life to the Fullest · The Seed Project

• 0:02
  Welcome to The Seed Project.
• 0:05
  It's a podcast that nourishes your heart, mind, and soul.
• 0:09
  I'm your host, Charlotte Edwards.
• 0:12
  I believe everyone plants a seed in each other, whether it's a seed of knowledge, inspiration, or impact.
• 0:19
  I created this podcast so we could have real conversations, create connections, and grow into the best versions of ourselves.
• 0:27
  Everyone has a story to tell, so let's share ours together to empower, heal, and grow.
• 0:32
  Laugh and learn.
• 0:34
  Grab a cup of coffee and let's start planting.
• 0:42
  Charlotte: Hey, everyone.
• 0:43
  Charlotte: Thanks for joining me.
• 0:44
  Charlotte: I'm really excited to have Tim O'Grady on today.
• 0:47
  Charlotte: Uh, Tim has an amazing story.
• 0:49
  Charlotte: Uh, he's someone I've admired for a really long time.
• 0:53
  Charlotte: I met tim about 25 years ago he's my husband's best friend and became my son's godfather.
• 0:59
  Charlotte: His personality is infectious.
• 1:01
  Charlotte: He has a huge heart and a sense of humor that can leave you laughing for days.
• 1:06
  Charlotte: Tim's a family man.
• 1:07
  Charlotte: Sports enthusiast and a friend to everyone.
• 1:11
  Charlotte: But what I haven't said is Tim lives with cystic fibrosis.
• 1:15
  Charlotte: I use the word lives because Tim has never made his diagnosis, his identity, and always lives to the fullest.
• 1:23
  Charlotte: I'm so grateful that he decided to come share his story today Good morning, Tim.
• 1:30
  Charlotte: Thanks so much for being here.
• 1:32
  Charlotte: Can you tell us a little bit about cystic fibrosis and how it has impacted your life
• 1:39
  Tim: Yeah, sure.
• 1:40
  Tim: Thanks for having me.
• 1:41
  Tim: Good morning.
• 1:41
  Tim: Um, so it's probably best to start from the beginning and maybe share a little bit more about what, what cystic fibrosis or CF is.
• 1:51
  Tim: So, um, I was born in 1974 and CF is a genetic disease.
• 2:00
  Tim: That affects your lungs, liver, uh, and other organs.
• 2:05
  Tim: Essentially, it's a mucus buildup in those organs and it shuts them down.
• 2:10
  Tim: So again, when I was born in 1974, doctors really, at that time, had no idea Uh, a what it was and be, how to treat it.
• 2:22
  Tim: And the how to treat it part is still sort of up in the air, although medical advancements have come a long way since, uh, 49 years ago.
• 2:32
  Tim: so when.
• 2:33
  Tim: Again, when I was born, I had problems digesting my food initially.
• 2:40
  Tim: amazingly my father who is a physician, knew that I was not allergic to milk.
• 2:46
  Tim: They were trying to figure out what was quote unquote wrong with me.
• 2:50
  Tim: And, hearing stories from my mom about going to the pediatrician and them actually accusing her of malnourishment and not.
• 3:00
  Tim: You know, not doing a proper job of bringing me up at my very, very earliest years or months.
• 3:07
  Tim: it's kind of heartbreaking, but ultimately after about a year, we went down to the children's hospital of Philadelphia CHOP.
• 3:17
  Tim: And, my parents brought me to a gentleman named Dr.
• 3:21
  Tim: Sabinga who diagnosed me with cystic fibrosis.
• 3:26
  Tim: And, we hadn't heard too much about CF, at the time babies were dying, frankly, pretty early on.
• 3:36
  Tim: And so it was not, and still is not a very prominent disease.
• 3:40
  Tim: There's only 30, 000 people in the U.
• 3:42
  Tim: S.
• 3:42
  Tim: today with, with CF,
• 3:45
  Charlotte: Really only 30, 000.
• 3:46
  Tim: Only 30, 000.
• 3:47
  Tim: Yeah, it's, so when I was born, the very best life expectancy was 28.
• 3:52
  Tim: And so, you know, I've dated myself already.
• 3:54
  Tim: So today I'm 49.
• 3:56
  Tim: So it's, doubling that, which is, which was good.
• 3:59
  Tim: But yeah, that's kind of the, the very early part of my story, if you will.
• 4:04
  Tim: you know, we would travel down to Philadelphia, which is only about an hour and 15 minutes away, but my mom would pack me in the car every month for as long as I can remember, probably until about third grade.
• 4:18
  Tim: we would go down monthly and I would get lung chest x rays.
• 4:22
  Tim: they would deal with my, Pancreatic insufficiencies, my enzyme deficiency with, digesting food.
• 4:29
  Tim: Uh, and so, yeah, I've been sort of on this, uh, medication road to treatment and preventing CF from taking my life for, as long as I can remember.
• 4:41
  Charlotte: Do you remember at a, a young age, when you're starting to eat, did you have to take, certain pills to help you, digest your food, Do you remember any of that?
• 4:48
  Tim: I do actually vividly.
• 4:50
  Tim: So you have to take, um, pancreatic enzymes.
• 4:53
  Tim: So, to help replace the enzymes that were being blocked by the mucus, caused by CF.
• 5:00
  Tim: And so with meals, as I was eating, I would have to take, they're coming to capsule.
• 5:06
  Tim: And so what my mom used to do when I was a younger, real young is she would break open the capsule and put it in Whipped cream or ice cream or something that I would kind of force down tasted terrible.
• 5:18
  Tim: I remember that too So at you know as I was small I was taking maybe One capsule with each meal, so, you know, three a day, maybe four a day with snacks, everything else, and then I'll never forget, uh, We went out to dinner, and I was probably four years old, and my mom had forgotten to bring the capsules with her.
• 5:43
  Tim: And it's not life or death.
• 5:45
  Tim: It's literally like you could do it when you get home.
• 5:47
  Tim: It's not a big deal, but it freaked me out and I ran home and I threw it down, down the hatch.
• 5:54
  Tim: And that's, that's when I started swallowing pills.
• 5:57
  Tim: I was in a little bit of a panic mode.
• 5:59
  Tim: I was very aware.
• 6:00
  Tim: I think at a young age of my situation, I have, uh, an older brother and a younger sister who were and are, thank God, completely healthy.
• 6:11
  Tim: And I was the one having to go to the hospital on a monthly basis.
• 6:16
  Tim: I was the one that needed to take pills.
• 6:18
  Tim: So it was a constant reminder, uh, literally every time I ate something that I was sick.
• 6:24
  Tim: So, but yes, from the pills perspective, I remember it.
• 6:27
  Tim: And, uh, now I take about 30 a day.
• 6:31
  Charlotte: Wow.
• 6:32
  Charlotte: Wow.
• 6:33
  Charlotte: As a kid with your siblings, do you remember how that made you feel?
• 6:36
  Tim: You know, it didn't, um, I didn't feel any different.
• 6:40
  Tim: My parents never treated me any different either.
• 6:43
  Tim: Uh, so I didn't know anything other than.
• 6:48
  Tim: What I went through.
• 6:49
  Tim: Um, so I, it wasn't like a woe is me thing that would never happen in my house.
• 6:55
  Tim: Uh, but it also wasn't a something that I really even thought of that much.
• 7:01
  Tim: I was very fortunate.
• 7:03
  Tim: most of the Mortality, I would say almost all of the mortality that comes with cystic fibrosis is via the lungs, uh, so you either get a lung infection, you'll read or hear about people needing lung transplants, uh, it's that mucus that builds up in your lungs.
• 7:21
  Tim: That ultimately causes you to not breathe.
• 7:24
  Tim: my lungs to date have been relatively healthy.
• 7:28
  Tim: And so again, as a younger child, uh, most of my attributed symptoms were because of the food and me being smaller and not being able to digest food or vitamins.
• 7:42
  Tim: You know, you think about all the things you eat that are good for you.
• 7:45
  Tim: And.
• 7:46
  Tim: If your body doesn't digest them fat, even fat.
• 7:49
  Tim: So, it's, it's going to be a challenge and it's a painful one.
• 7:54
  Tim: from a, from a stomach perspective, I remember being in a lot of, a lot of pain.
• 7:59
  Tim: Uh, but you know, again, as you get older, as you get bigger and, you know, I kind of live with it now.
• 8:06
  Tim: And so, that was, that was the, growing up to answer your question directly, no, I didn't think too, too much different about my situation.
• 8:15
  Tim: Versus my, my siblings.
• 8:18
  Charlotte: well, and then what about as you grew up and you went into middle school, which is just a brutal phase of life to begin with.
• 8:25
  Charlotte: At lunchtime just go in the bathroom or did most your close friends know what was going on or did you keep it quiet or just don't give a crap.
• 8:32
  Charlotte: This is me.
• 8:33
  Charlotte: Take me or leave me.
• 8:34
  Tim: So, so I couldn't, you couldn't go to the bathroom and take, I couldn't bring pills with me to lunch, so, or to school rather.
• 8:40
  Tim: So we had to give them to the nurse.
• 8:42
  Tim: And so to your point, every lunchtime I would have to leave early, go to the nurse.
• 8:49
  Tim: Take my pills and then go to the cafeteria and meet my friends or all the other kids.
• 8:53
  Tim: So, um, I didn't, I didn't share too, too much with a lot of people.
• 8:58
  Tim: My, my close friends knew, uh, that I needed to take medication.
• 9:03
  Tim: I mean, again, you're in grammar school.
• 9:04
  Tim: How much, how much are you
• 9:05
  Charlotte: Right.
• 9:06
  Tim: Sticker, but they did, they knew that I had to take pills and so, and the reason being is that if I had a sleepover, or if I went out with a, a friend's family for dinner, uh, their parents were, were well aware.
• 9:19
  Tim: So I actually had friends that were my, sort of my buddies when I was real little.
• 9:26
  Tim: They would have pancreatic enzymes at their house just so when I was over and I needed them, they would just give them to me.
• 9:33
  Tim: So that was.
• 9:34
  Charlotte: Oh, that's pretty cool though.
• 9:35
  Charlotte: To have such a close knit group that, that it's a home away from home almost.
• 9:39
  Tim: Yeah, yeah, it was, it was, you know, the parents understood and everything else and nobody was, you know, at that, at that point I was just taking the pills on my own anyway, so it wasn't that, that really that big of a deal.
• 9:52
  Charlotte: Oh, that's great.
• 9:52
  Charlotte: Cause a lot of times in middle school is just brutal,
• 9:56
  Tim: it can be, yeah.
• 9:57
  Charlotte: I just remember, when I first met you, I don't know, 23 years ago, something like that.
• 10:05
  Charlotte: You're just always.
• 10:07
  Charlotte: A lover of life, I had no idea that you even had cystic fibrosis.
• 10:13
  Charlotte: You've never ever made that your identity.
• 10:18
  Charlotte: You are a just amazing person that's full of life, that is living with cystic fibrosis, but it doesn't define you.
• 10:30
  Charlotte: And embraces everything.
• 10:31
  Charlotte: I mean, I think that's just remarkable.
• 10:34
  Charlotte: I do remember, I guess I met you in my early twenties that your 28th birthday was The big milestone, holy, here we go.
• 10:42
  Charlotte: I've made it
• 10:43
  Tim: Yeah, it was, uh, it was interesting.
• 10:46
  Tim: So when, going back to those days with, uh, Dr.
• 10:51
  Tim: Sabinga and I was, you know, four years old, uh, through probably fourth grade, it would, it would literally be every month.
• 10:59
  Tim: I remember.
• 11:02
  Tim: Doing the x, it was the same ritual every time.
• 11:04
  Tim: It was getting your x rays done.
• 11:06
  Tim: They put like a, that, way back when, they, they, big lead vest and everything else.
• 11:12
  Tim: Um, getting the x rays done, going up to his office.
• 11:17
  Tim: I would sit outside.
• 11:19
  Tim: And play with marbles or cars or whatever he had.
• 11:22
  Tim: He'd have my mom talk to her and she would come out, look like she had just been bawling, crying, and then we'd drive home and eventually, and this, this is, you know, pre internet, pre research for, you know, a young kid anyway.
• 11:39
  Tim: I did learn that, you know, they didn't know what to tell her or do with me.
• 11:43
  Tim: Uh, my.
• 11:46
  Tim: median, you know, the average age of somebody with CF that was a male, was 28 at the time.
• 11:53
  Tim: For females, it was a teenager.
• 11:55
  Tim: So, you know, for whatever reason, uh, young females have a tougher time fighting CF than, than men do or boys.
• 12:06
  Tim: And so that, I don't know where or how or when I first learned that I sort of had like an egg timer on your life.
• 12:16
  Tim: But that makes a huge impact.
• 12:20
  Tim: Um, and so, yeah, I just, I will, I will live life every day.
• 12:26
  Tim: And I wake up just like I did this morning and take a big breath and thank God that you're breathing and off you go.
• 12:32
  Tim: So there's, you know, the time for the sadness or there's time for that.
• 12:39
  Tim: And there's time to be pissed and upset and it's, there's nothing wrong with that.
• 12:44
  Tim: Um, but you cannot, at least I cannot, I will not, uh, Let that affect how I spend my days.
• 12:52
  Tim: Not happening.
• 12:53
  Tim: Won't
• 12:55
  Charlotte: amazing.
• 12:56
  Charlotte: I, remember being with Sheila.
• 12:58
  Charlotte: So Sheila is Tim's wife, but this was back in the day before we were married and God, I think she and I were shopping at the Grove or something.
• 13:06
  Charlotte: I distinctly remember and Sheila was.
• 13:10
  Charlotte: Upset, like crying, but not in a necessary bad way.
• 13:13
  Charlotte: And I was like, Oh, my goodness, what's going on?
• 13:15
  Charlotte: And I remember that you had just gotten an appointment with a cystic fibrosis doctor that deals with adults.
• 13:24
  Charlotte: And, it was such a big deal because obviously this now we're in our mid late twenties and there's different.
• 13:33
  Charlotte: I don't know, issues.
• 13:34
  Charlotte: I mean, that's kind of a negative connotation, but different issues to deal with as you become adult and you're living longer and, we were crossing the bar and going and living further.
• 13:43
  Charlotte: And I just remember her happy tears that, Oh my God, we finally found somebody that can help manage Tim's disease so that we can get married, have a life together and, you know, move forward.
• 13:57
  Charlotte: And that was just such a.
• 14:00
  Charlotte: relief.
• 14:01
  Tim: Yeah.
• 14:02
  Tim: Yeah.
• 14:02
  Tim: She, she was a big part of that, frankly.
• 14:04
  Tim: I, um, I got, you get to this weird point.
• 14:09
  Tim: So after having to go to chop there, there was a physician around me here in New Jersey, that is a pediatric CF specialist.
• 14:19
  Tim: Right?
• 14:20
  Tim: So when I was a sophomore in high school, freshman in high school, I went to him.
• 14:26
  Tim: His name was Dr.
• 14:27
  Tim: Zanny.
• 14:28
  Tim: Great, great guy.
• 14:30
  Tim: Again, once you break into like 18 Dr.
• 14:36
  Tim: Z's not there to, well, he is there, but he, you know, you're not going to him anymore.
• 14:40
  Tim: He's a, a pediatric specialist.
• 14:42
  Tim: And so after that, um, You know, you kind of look in the mirror, you know, what else do I, where am I, where am I going from here?
• 14:52
  Tim: What do I need to go?
• 14:54
  Tim: Uh, I, I kind of feel like I'm managing this the right way and the answer is yes, you need to go.
• 14:59
  Tim: So, um, and then when I met Sheila, she was emphatic about me making sure that I went.
• 15:06
  Tim: So she actually found, uh.
• 15:11
  Tim: The clinic that I still go to today every three months.
• 15:13
  Tim: I head up there to, um, Morristown, New Jersey.
• 15:17
  Tim: It's the gunner a size and cystic fibrosis adult CF center.
• 15:22
  Tim: And so I see a team of people.
• 15:26
  Tim: Up there now, uh, every three months.
• 15:29
  Tim: So I go up there and they, you know, they do the lung function test.
• 15:32
  Tim: They asked me about, you know, do I need new medication?
• 15:36
  Tim: They talked to me about, uh, clinical trials that are happening and everything else.
• 15:42
  Charlotte: Well, it's great that CF's come so far that they actually need the adult clinic.
• 15:47
  Tim: Yeah, a hundred percent.
• 15:48
  Tim: Cause like I said, when I was born there, there was no adult happening.
• 15:53
  Tim: So.
• 15:54
  Tim: Yes, there have been, um, significant advances due to like funding and research and all this other stuff, uh, for CF.
• 16:05
  Tim: There's a company in Boston called Vertex, which, um, so I've been on a new drug along with my, uh, my digestive enzymes.
• 16:14
  Tim: I went on a drug called Trikafta, probably about, let's see, uh, at the end of 2019.
• 16:25
  Tim: And while I'm not exactly sure what it does, inside.
• 16:29
  Tim: Uh, it, it, it has changed my body at a, at a cellular level.
• 16:33
  Tim: It's, you know, my, my lung function increased.
• 16:37
  Tim: I gained probably 20 pounds in the last three years.
• 16:41
  Tim: Um, and it's, it's helped me maintain my weight and I don't, I used to cough a lot.
• 16:48
  Tim: Like most people with cystic fibrosis, you know, there is a big lung problem there.
• 16:54
  Tim: And I, you know, I haven't coughed yet this whole interview.
• 16:57
  Tim: And it used to be.
• 16:58
  Tim: Multiple, like a lot of coughing and so noticeable where you, you, you, you know that I'm sick and so it's completely, uh, sort of squished coughing, which is kind of, which is good.
• 17:12
  Tim: It's telling me that my lungs are healthy, uh, more so than the annoyance of just coughing all the time.
• 17:18
  Charlotte: Yeah, I've heard of remarkable, things, about that as well.
• 17:21
  Charlotte: Just, being a nurse and having some patients with cystic fibrosis, that that's been a kind of game changer in the CF world.
• 17:29
  Tim: Yep.
• 17:30
  Tim: Not a cure, but definitely a help
• 17:32
  Charlotte: Yeah, definitely.
• 17:33
  Tim: Yeah.
• 17:34
  Charlotte: Well, speaking of lung capacity, let's talk a little bit about your New York City marathon.
• 17:41
  Charlotte: What, made you decide to do that?
• 17:42
  Charlotte: I mean, remarkable a, just a feat in its own, but then also, with you, having cystic fibrophysis and maybe not the same lung capacity as, the average person.
• 17:52
  Charlotte: So, I mean, that's a huge accomplishment on many, many different
• 17:57
  Tim: yeah.
• 17:58
  Tim: Thanks.
• 17:59
  Tim: Um, so.
• 18:00
  Tim: No, my, my lung capacity right now is about 88%.
• 18:03
  Tim: So if you do the FEV1, I'm about an 88, which is fine.
• 18:07
  Tim: It's, it's working for me.
• 18:09
  Tim: Um, so in 1980, I had a little sister who was born with cystic fibrosis.
• 18:21
  Tim: Now I was five.
• 18:23
  Tim: And so what, what my parents used to tell me, You know, when I would question, why do I have to take these pills?
• 18:29
  Tim: Why do I have to go to Philadelphia every month?
• 18:31
  Tim: Why do I need these long x rays?
• 18:33
  Tim: And what do you tell a four year old?
• 18:34
  Tim: Is that, oh, you're special, right?
• 18:36
  Tim: That, that was their thing.
• 18:37
  Tim: They were like, oh, you're special, you know, kind of, we'll explain to you when you can understand.
• 18:42
  Tim: And so, when my sister Erin was born, my mom, I remember talking to her from the hospital, and she said, oh, you have...
• 18:54
  Tim: Your sister, Erin, she's special like you are.
• 18:56
  Tim: She's gonna be doing the same things you're doing.
• 19:00
  Tim: Uh, cause your brother and your sister are not.
• 19:02
  Tim: And, uh, she never lived past two weeks.
• 19:07
  Tim: Right?
• 19:07
  Tim: So, she, she died at about two weeks old.
• 19:10
  Tim: She never left the hospital.
• 19:12
  Tim: And so, in 2019, I, for whatever reason decided I wanted to raise money in her name for cystic fibrosis, and I do run to keep my lungs healthy.
• 19:28
  Tim: Uh, it's interesting that the bounce of the, of your, of your gate, when you run kind of breaks up mucus in your lungs.
• 19:37
  Tim: And so it's, it's good for me to run, uh, probably bad for my knees and my joints, but anyway, for my lungs, it's good.
• 19:45
  Tim: And so I decided I was going to run a marathon.
• 19:48
  Tim: In her honor, that's what I did and I raised money through the boomer size and foundation and I was able to Finish the marathon.
• 20:00
  Charlotte: It was fabulous.
• 20:01
  Charlotte: And your Superman
• 20:03
  Tim: Yeah Yes, there you go.
• 20:05
  Tim: Yeah, we're in a superman shirt.
• 20:07
  Charlotte: that's awesome.
• 20:09
  Charlotte: And then what was also, the mountain that you and Sheila climbed?
• 20:13
  Tim: So we did devil's path, which is a day hike Well, it shouldn't be a day hike.
• 20:18
  Tim: We did it in a day, uh for the new jersey chapter Uh, I actually did that two years prior to the marathon.
• 20:26
  Tim: So I think it was like 20 17, um, where again, to raise money for CF, we, uh, we did this day hike with the New Jersey chapter of the Cystic Fibrosis Foundation.
• 20:40
  Tim: And, um, with a, with a group and we did, it was 26 miles.
• 20:46
  Tim: If you ever do a little research, it's called devil's path.
• 20:49
  Tim: It's in the Catskills in New York.
• 20:51
  Tim: And it's supposed to be like the most difficult day hike in the East coast or something crazy like that.
• 20:56
  Tim: It was hard.
• 20:57
  Tim: It was, it was very, very hard.
• 20:59
  Tim: Uh, but we did it.
• 21:01
  Tim: And we hiked straight for 16 hours.
• 21:03
  Tim: It's over five different peaks.
• 21:05
  Tim: And so that was pretty cool.
• 21:07
  Tim: That was, uh, so we did that too.
• 21:09
  Charlotte: Amazing, amazing accomplishments.
• 21:12
  Tim: Yeah.
• 21:13
  Charlotte: Amazing.
• 21:14
  Charlotte: going back to your sister though, do you recall as a toddler, did that scare you since she was special?
• 21:21
  Charlotte: That's how your mom told you that you were special, Aaron was special like you, do you remember being freaked out by that or just sad or
• 21:29
  Tim: A little bit, a little bit.
• 21:30
  Tim: And again, you know, I was a little older than a toddler.
• 21:33
  Tim: I was five, I think.
• 21:35
  Tim: And so.
• 21:36
  Tim: Old enough to kind of know, you know, and also young enough to not really know exactly what the hell that meant.
• 21:42
  Tim: Right.
• 21:43
  Tim: Or what was going on.
• 21:44
  Tim: So, yeah, I remember being like, Oh, you know, she's special and she didn't make it home from the hospital and she's dead.
• 21:51
  Tim: That's what you think about as a five year old.
• 21:54
  Tim: Not to mention what my poor parents went through.
• 21:57
  Tim: Um, so yeah, I do.
• 22:00
  Tim: I remember it.
• 22:01
  Tim: I remember also.
• 22:03
  Tim: On that kind of path, when we would drive down to chop every month, we would have, we would carpool and so it's, it's so funny just how things have advanced.
• 22:17
  Tim: So my mom would pick up.
• 22:19
  Tim: I was fortunate enough to have a mother who, who, was home and was able to drive us down every month.
• 22:26
  Tim: Uh, but we would pick up other children that needed to go to the CF, the pediatric CF at CHOP, and it would literally be like a carpool.
• 22:36
  Tim: And why, why I'm saying that's funny is now.
• 22:40
  Tim: With what they know about CF is that I can't, I shouldn't be within five feet of anybody who has cystic fibrosis.
• 22:48
  Tim: Apparently we can give like somebody I'm susceptible to get sick from another CF person and vice versa.
• 22:55
  Tim: I think there's just something with the, uh, the exchange
• 22:59
  Charlotte: early?
• 23:00
  Tim: of infection.
• 23:01
  Tim: Exactly.
• 23:02
  Tim: So, but we used to pack my mom's station wagon filled with us.
• 23:05
  Tim: Uh, there's probably like three or four that we would drive down every month.
• 23:09
  Tim: And then over time, somebody just wouldn't get picked up or wouldn't be there.
• 23:13
  Tim: And then over time, another person wouldn't get picked up or be there.
• 23:18
  Tim: You know, what I came to realize later, of course my mom wasn't going to tell me this, is they passed away.
• 23:25
  Tim: So it, it, it hit, it hit you oddly in a, in a, you know, these are the people that I, you know, I was like riding on the bus to school, we ride in the car on the way to, on the way to the thing and they just weren't there.
• 23:38
  Tim: Um, so yeah, it, it kind of wasn't, it isn't like one event, but it's like over time, it's, uh, it's pretty surreal to.
• 23:47
  Tim: Comprehend and grasp, you know, um, and I, honestly, I think the, you know, going back to my parents as, as a parent of boys and just like you are with Legree, um, I could not imagine having to go through what they went through with my sister and just being scared.
• 24:08
  Tim: I'm sure with me, uh, worse than anything I think I ever dealt with, frankly, I could deal with it.
• 24:16
  Tim: It's me.
• 24:16
  Tim: I'm fine, but it's the, the people that, Love you most.
• 24:23
  Tim: Uh, it's gotta, it's gotta be the worst situation ever.
• 24:27
  Charlotte: Yeah, because originally, when you were telling me the carpooling story, my first thought was, Oh my God, this is so great.
• 24:33
  Charlotte: that's gotta make you feel good that.
• 24:36
  Charlotte: You're not the only one, and you've got this carpool, and you have some buddies that are like you, but as you progressed in the story, I'm like, holy crap, I mean, that's gotta be scary, too, as you get older, that, you know,
• 24:51
  Tim: Yeah.
• 24:52
  Charlotte: we didn't pick up Johnny today, and Johnny's just not here.
• 24:56
  Charlotte: So,, at first Oh, that's heartwarming.
• 24:57
  Charlotte: And now I'm like, Oh, that's heartbreaking.
• 24:59
  Charlotte: As I'm listening to this story of,
• 25:01
  Tim: yeah.
• 25:02
  Charlotte: both sides of the coin to have a support system and then also scary to lose that support system.
• 25:08
  Tim: Yeah.
• 25:09
  Charlotte: Yeah.
• 25:10
  Charlotte: Yeah.
• 25:10
  Charlotte: And then as a role of a parent, how do you think that affects you being a parent?
• 25:15
  Charlotte: obviously you guys were young when you had the boys and, you wanted a family, and that was, part of y'all's plan, but did that scare you a little bit at first, that you might not be around to, to raise them, or you were confident in your treatment plan and confident with your doctors going forward?
• 25:34
  Tim: Yeah.
• 25:34
  Tim: I, I think being around was not anything that I thought of.
• 25:39
  Tim: I wanted, I wanted, uh, you know, a family more than anything, and it's part of the reason why I live my life the way I do.
• 25:49
  Tim: I attribute that too.
• 25:51
  Tim: My boys is I have to be around for them and I'm not going to not be around for them.
• 25:57
  Tim: And so my typical day is getting up and doing lung treatments and running and doing things that.
• 26:06
  Tim: You know, I'd much rather sleep and get some rest and everything else, but I can't, I won't, I won't allow myself to not be there for them.
• 26:17
  Tim: Now, can I control everything?
• 26:19
  Tim: Absolutely not.
• 26:20
  Tim: Does, if my lung function plummets and you know, who knows, but I focus on what is in my control and that is the work and making sure, you know, I'm compliant with all my medication and all that other good stuff.
• 26:37
  Tim: And then what's out of my control.
• 26:39
  Tim: I, I've, I've sort of given to Not having to worry about it.
• 26:45
  Tim: I can't burden myself with something I can't control.
• 26:48
  Tim: What I can burden myself with is what is well within my control.
• 26:53
  Tim: And that's what I focus on.
• 26:55
  Tim: And so, yeah, I'd love to be around till I'm 90.
• 26:57
  Tim: I have no idea.
• 26:59
  Tim: The way things are going, it's getting better and better.
• 27:01
  Tim: And there's older and older people with CF and, you know, I kind of look at it now like I'm on borrowed time.
• 27:07
  Tim: You know, I was 28 was my, my, my day, my, my day of expiration.
• 27:15
  Tim: Um, and so I'm way beyond that.
• 27:18
  Tim: So I can't focus on the what ifs.
• 27:24
  Charlotte: Is that the advice that you would give somebody that is currently living with, with CF?
• 27:32
  Tim: Um, I think so.
• 27:33
  Tim: Yeah, I think that, uh, you know, again, I, I, I look at myself as extremely fortunate, which I know might sound weird after what we just talked about.
• 27:42
  Tim: Um, but I am very, very lucky.
• 27:46
  Tim: And I'm relatively healthy and so It might sound if you're talking to somebody with CF who's, you know, has had a double lung transplant or on a transplant list who seemingly is worse off in air quotes than I am right now for me to tell them, Oh, don't worry about what you can't control.
• 28:07
  Tim: I don't know how well that would go over or how I might be receptive to that.
• 28:12
  Tim: But yes, uh, frankly, I would tell anybody that whether you have CF or not, like you, you know, sky rising or the sun rising, the sun setting tonight are things that are out of my control.
• 28:26
  Tim: I cannot, you know, inhibit my life or put anything on pause because that's not within my reach.
• 28:35
  Tim: There's a lot that is in within your reach, just you, me as a human being.
• 28:41
  Tim: That you can control.
• 28:43
  Tim: And so, uh, focus on that, worry about that, make good decisions, do your best.
• 28:50
  Tim: I don't know.
• 28:50
  Tim: And, and, you know, as you talked about before, just, I have perhaps an interesting, uh, optimistic perspective on life because of my experiences, but that's been kind of a blessing.
• 29:04
  Tim: I wouldn't change it.
• 29:06
  Charlotte: I would say you, you grab life and you, and you live it, Day one, you do it to the fullest and all aspects and which is, is wonderful.
• 29:17
  Charlotte: I mean, you love hard, you big family man, big friend guy, big community guy.
• 29:22
  Charlotte: And, and that's, what's so wonderful about you that, you've taken what you've been given and you can let it take you down the road of despair and this sucks.
• 29:33
  Charlotte: And why me, or you can say, I'm here today and.
• 29:39
  Charlotte: I'm going to make the most of it.
• 29:41
  Tim: it's a choice.
• 29:42
  Tim: It's a, it's a, it's a choice.
• 29:43
  Tim: You could choose how to, how to look what side of the coin you want to look at life.
• 29:48
  Tim: And so I consciously choose what I think is the right side.
• 29:53
  Tim: And, um, not every day.
• 29:56
  Tim: It does not feel good.
• 29:57
  Tim: It's, you know, there's, there's a whole lot that goes with being me.
• 30:02
  Tim: Uh, But there's a whole lot of good too.
• 30:06
  Tim: So I just focus on that.
• 30:10
  Charlotte: Well, I appreciate you sharing your story with us today.
• 30:14
  Tim: Oh, thank you.
• 30:15
  Tim: Yeah.
• 30:15
  Tim: I, I'm happy to do it.
• 30:18
  Charlotte: And I certainly can't imagine a world without Tim O'Grady, certainly not in, in my circle or in my family, you're a big part of it.
• 30:27
  Charlotte: So, thank you again for, being on and sharing your story.
• 30:32
  Tim: You're welcome.
• 30:32
  Tim: Thanks for having me.
• 30:35
  Charlotte: I appreciate you spending this time with me until next time, keep sowing the seeds of love in your life and those around you.