Latest / Tom's Hirschsprung's Podcast / Episode 39 - With Jodi Longdo

Transcript

Episode 39 - With Jodi Longdo · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprung's Podcast, where our provide
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Speaker 1: a look into the remarkable experiences of the most inspiring
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Speaker 1: people around Hirshprung's disease and sports.
0:38
Speaker 2: Hello and welcome to episode thirty nine of Tom's Hirshprungs podcast.
0:44
Speaker 2: Have a different one for you today. I have Jody
0:47
Speaker 2: Longdo with me and we are going to talk about sports.
0:50
Speaker 2: We're going to talk about hirshprungs and we're also going
0:53
Speaker 2: to talk about the medical industry as well. And welcome
0:57
Speaker 2: to the podcast. Jody, Thank you.
1:00
Speaker 3: I really appreciate the opportunity to.
1:01
Speaker 4: Speak with you.
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Speaker 2: I appreciate appreciate having you on. When you messaged me,
1:07
Speaker 2: because we've message back and forth a little bit. You
1:09
Speaker 2: message me about your story that we'll get into and
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Speaker 2: a bit and what you do for a living. As
1:16
Speaker 2: well as having Hirshbrungs, I thought, well, how could I
1:18
Speaker 2: not have your son. I'm absolutely perfect for the podcast,
1:23
Speaker 2: both with the Hirshbrungs. Obviously with my background in sport,
1:26
Speaker 2: I love talking about sport every available opportunity. I will
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Speaker 2: talk to anyone and everyone about sport. So absolutely perfect.
1:34
Speaker 2: So thank you so much for coming on. I'll start,
1:37
Speaker 2: if I may, from the beginning, when you would diagnosed
1:43
Speaker 2: with total total klonic hirshbruns, obviously being a very rare condition.
1:50
Speaker 2: How was that like growing up sort of with total
1:55
Speaker 2: klonic hirshpruns.
1:58
Speaker 3: Definitely different? I think several aspects, not only just going
2:06
Speaker 3: through the surgeries as a child. Of course I have
2:09
Speaker 3: minimal recollection of some of that. There are certain pieces
2:13
Speaker 3: that do click out as far as memory wise, you know,
2:16
Speaker 3: requirements of you know, corectal flushes. I had to have
2:21
Speaker 3: on a regular basis trips to see my surgeon, who
2:26
Speaker 3: was fantastic, doctor William Tryama, who I attribute a tribute
2:30
Speaker 3: to saving my life. And that also just dietary restrictions,
2:37
Speaker 3: things that would upset my stomach, things that would cause
2:41
Speaker 3: pain that I couldn't eat like the rest of the kids.
2:44
Speaker 3: When I was growing up, I had a lot of
2:46
Speaker 3: restrictions and whether it be activity or being afraid to
2:50
Speaker 3: stay over to a friend's house because I didn't know
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Speaker 3: if I would get diarrhea, if I would have stomach pain,
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Speaker 3: if I would get sick, and I didn't want to
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Speaker 3: be embarrassed in front of friends. Yeah, I feel like
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Speaker 3: it was maybe a little bit different then than that
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Speaker 3: was that I grew up with absolutely.
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Speaker 2: Yeah, you mentioned mentioned dietary restrictions as well. Was that
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Speaker 2: in a lot of cases I see and in my
3:16
Speaker 2: own hirsch Brungs, nobody kind of said to me, but
3:18
Speaker 2: you can't pet this or you can't beat that. Was
3:21
Speaker 2: that sort of a case of trial and error with
3:24
Speaker 2: you or were you told specifically from sort of day one,
3:28
Speaker 2: don't eat this, don't eat that.
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Speaker 3: Well, I think where it came from is that, you know,
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Speaker 3: my my mom used to tell me, you know, the
3:37
Speaker 3: certain things that like chocolate, I couldn't eat, things that
3:41
Speaker 3: were high sugar, things that would basically contribute to diarrhea
3:45
Speaker 3: for the most part, that would lead to dehydration. So
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Speaker 3: those were the things that I was kept away from.
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Speaker 2: Okay, yeah, no, that makes that makes absolute sense. But
3:56
Speaker 2: when you said with the sort of social barriers as well,
3:59
Speaker 2: in sort of of not sure where you could stay
4:03
Speaker 2: over it somewhere and do this and do that. Did
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Speaker 2: that sort of have it all throughout so childhood or
4:11
Speaker 2: did that sort of stop at various points?
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Speaker 3: I think it improved, and I think I had friends
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Speaker 3: that understood what you know, what I was going through,
4:21
Speaker 3: especially my my best friend growing up, who really truly understood,
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Speaker 3: and so it made it more easy to be able
4:29
Speaker 3: to partake in those activities knowing that your friends knew.
4:32
Speaker 3: But I think the other part was even just on
4:35
Speaker 3: the social aspect as a teenager.
4:37
Speaker 4: And you know I had mentioned.
4:38
Speaker 3: About your podcast with Zoe Coaletti, is that you know,
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Speaker 3: bikini as a seventeen year old was not like any
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Speaker 3: other seventeen year old when you have, you know, a
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Speaker 3: vertical scar across your.
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Speaker 4: Whole abdomen from initial surgery.
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Speaker 3: You've got your scar from you know, the iliastomy that
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Speaker 3: you had. I mean, it wasn't just like putting on
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Speaker 3: a bikini and having a flat stomach or you know,
5:03
Speaker 3: I never had that and so you find yourself covering
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Speaker 3: up or is it okay for me now to wear bikinis.
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Speaker 3: So I think that those were the bio image things
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Speaker 3: that you struggle with with all of the multiple surgeries
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Speaker 3: that you have. So the scars do some typically warrant
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Speaker 3: some eights, but now I look at them is a
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Speaker 3: little bit differently.
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Speaker 2: That's an interesting point. You may because I see this
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Speaker 2: so often. I was spending most of my time on
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Speaker 2: Instagram now and promoting a lot of the podcast on
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Speaker 2: there and Facebook as well. You do see a lot
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Speaker 2: more people who model with Stonemas, and then you mentioned
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Speaker 2: Zoe there as well, and part of her range that
5:46
Speaker 2: she said in her interview when she was picking out
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Speaker 2: models to model their swimwear brand, she did pick specifically
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Speaker 2: people with scars, which I thought was really really interesting
6:02
Speaker 2: because it's now. I mean, obviously you don't see it
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Speaker 2: sort of all over the place, but I think I
6:07
Speaker 2: tend to see a lot more people in bikinis, in
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Speaker 2: swimsuits with Stona bags with scars and sort of less
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Speaker 2: I don't know whether it's shamed, I don't know it
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Speaker 2: is the right word, but less sort of wanting to
6:21
Speaker 2: cover up their scars and what have you. But but
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Speaker 2: I still get your point there because obviously that's very
6:29
Speaker 2: much for me as well. Having lots and lots of
6:31
Speaker 2: scars and body confidence and body image I think is
6:37
Speaker 2: something that's not really talked about as much. I certainly
6:41
Speaker 2: don't probably should mention it more on here and I
6:45
Speaker 2: don't as much, but no, I definitely I definitely get
6:49
Speaker 2: you get your point with that, and especially obviously having
6:53
Speaker 2: sort of total total COLI like as well. I presume
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Speaker 2: as well you have the sort of the pull through
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Speaker 2: the pull through scar, the sort of the one that
7:01
Speaker 2: we all, yes, you'll have, I tend to call it.
7:05
Speaker 2: I remember talking to another guest about the pull through
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Speaker 2: scar and remember it looking like a train track, So
7:11
Speaker 2: that's what I've tended to call it, with its sort
7:14
Speaker 2: of again for those who are unaware, kind of usually
7:17
Speaker 2: a big scar across and then sort of little stitches
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Speaker 2: all the way through, so it looks like a train
7:22
Speaker 2: track effectively. But yes, so no, I definitely get your
7:28
Speaker 2: point on that. I'd also like to as well. We
7:32
Speaker 2: winch into the beginning about sport, and we were going
7:35
Speaker 2: to talk about sport, and you have competed and finished house.
7:41
Speaker 2: Since I had three iron man's, are they still called
7:45
Speaker 2: iron man's if you're a woman.
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Speaker 3: Yes, yeah, there's there's certain I think I've heard a
7:53
Speaker 3: different language. I know there's some side organizations that I
7:56
Speaker 3: earn f E. I don't know if you've.
7:59
Speaker 4: Seen that female iron woman.
8:02
Speaker 3: I've had some people say, who don't really understand iron man?
8:05
Speaker 4: Oh you're an iron woman.
8:06
Speaker 3: No, I'm an iron man. That's the correct term.
8:09
Speaker 2: So yes, right, okay, because I was I was searching
8:13
Speaker 2: through and thinking this. I follow a fair few fitness
8:17
Speaker 2: people and the only thing I could I could see
8:20
Speaker 2: was iron Man, and I thought, well, should it still
8:22
Speaker 2: just be called iron Man? Would be called iron Woman?
8:26
Speaker 2: I I don't know, I just I have no idea,
8:31
Speaker 2: but yeah, no I But also he said with the
8:35
Speaker 2: iron Man's that you you have completed three of them.
8:40
Speaker 2: When did you start getting into that kind of intense training?
8:48
Speaker 3: Well? I did my first triathlon back in Oh good
8:54
Speaker 3: goodness two thousand ish nineteen ninety nine. Mico Front I
8:59
Speaker 3: grew up with had talked me into doing the triathlon
9:03
Speaker 3: in Madison, Wisconsin. This was before iron Man came to Madison,
9:07
Speaker 3: and I thought what am I doing? But I took
9:10
Speaker 3: it more as a challenge, like I can do this,
9:13
Speaker 3: so she can do this, And afterwards I felt the
9:17
Speaker 3: reward and the pride that you have finishing that that
9:22
Speaker 3: I you know, after I had my son, I thought,
9:24
Speaker 3: I'm getting back into this. I'm definitely doing this. I
9:28
Speaker 3: was told growing up that it might be difficult for
9:32
Speaker 3: me to have children, and so I thought, hey, I
9:36
Speaker 3: had a healthy child. I was very lucky in the
9:39
Speaker 3: aspect that neither of my children have her sprungs. But
9:43
Speaker 3: I thought it's just more inspiration to do something more challenging.
9:47
Speaker 3: And so my first iron Man I completed was in
9:50
Speaker 3: twenty twelve and that was in Madison, Wisconsin, and that
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Speaker 3: was extremely emotional to be able to meet, but you know,
10:00
Speaker 3: meet that accomplishment and the people that you see along
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Speaker 3: the way. I think there's a lot of camaraderie that
10:06
Speaker 3: happens within Travlon. You have people who are cancer survivors,
10:10
Speaker 3: you have people that are amputees, you have I think
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Speaker 3: the community of iron Man is definitely one that will
10:18
Speaker 3: you know, coming in with somebody with hirshbrungs or any
10:20
Speaker 3: kind of challenge. It's inviting, it's supportive, and so I
10:23
Speaker 3: felt like that was a good place to kind of
10:26
Speaker 3: continue sports in trathlon. So yeah, and then it just
10:31
Speaker 3: kind of blew up to its own and it started
10:33
Speaker 3: doing more has I did escape from Alcatraz in San Francisco,
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Speaker 3: which is quite a challenge, and I think it just
10:46
Speaker 3: keeps pushing you to know, hey, I can do this.
10:48
Speaker 3: I don't have to be defined by you know, not
10:51
Speaker 3: having a colon doesn't mean I can't get through this.
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Speaker 3: I mean, there were challenges for sure, dehydration challenges I
11:00
Speaker 3: had in a seventy point three where I had to
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Speaker 3: go to the medical tent, but finished made it through.
11:07
Speaker 3: So yeah, you just you you have a mindset that
11:09
Speaker 3: definitely goes with that. And I think anybody who has
11:12
Speaker 3: gone through a chronic disease and stepped up and bought
11:16
Speaker 3: through it in a positive manner can do these things.
11:18
Speaker 3: They can do anything. There is no boundaries. It's just
11:21
Speaker 3: figuring out how you do it that your body can handle.
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Speaker 2: Yeah, yeah, definitely that there's it's it's definitely each to
11:30
Speaker 2: their own and finding your own way as what our
11:33
Speaker 2: tends to find. And you said the escape from Alcatrast,
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Speaker 2: how fall was? How far was that one?
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Speaker 3: That was a unique distance. It's not behalf and it's
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Speaker 3: not an Olympic distance. So actually I kind of fell
11:52
Speaker 3: with in a really weird year where they had a
11:57
Speaker 3: it was a small craft alert and so we were
11:59
Speaker 3: on the fair, I'm going out to Alcatraz Island and
12:03
Speaker 3: they had to cancel us for the swim because the
12:05
Speaker 3: waves are so high and it was dangerous, So we
12:08
Speaker 3: ended up starting on the bike. Unfortunately, as I was
12:11
Speaker 3: going down one of the hills in San Francisco. I
12:15
Speaker 3: had somebody kind of sword in front of me. I
12:17
Speaker 3: went to avoid them, ended up going over my handlebars
12:20
Speaker 3: and fractured a rib. But I thought, hey, it's only
12:25
Speaker 3: a rip fracture. I can I came too far, I
12:28
Speaker 3: worked too hard, so I got myself out of the ambulance.
12:30
Speaker 3: My family got me back to the transition and they said,
12:33
Speaker 3: if you can get yourself back.
12:34
Speaker 4: There, you can continue.
12:36
Speaker 3: So I completed the run with the sand ladder, the
12:40
Speaker 3: infamous sand ladder in San Francisco, and as I was
12:42
Speaker 3: going up the sand ladder, I met up with another.
12:45
Speaker 4: Lady who was recovering from pneumonia, and so.
12:48
Speaker 3: Her and I went together and encouraged each other to
12:51
Speaker 3: get to the finish line. So again it's the perseverance part.
12:55
Speaker 3: I think that anybody with the chronic disease, there's a
12:59
Speaker 3: mindset that you can attain, and I think after you
13:01
Speaker 3: will become so much as they read stories of, you know,
13:06
Speaker 3: children and families with hirsch Bruns, it's the mindset is different.
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Speaker 3: I think that you can push yourself and you can
13:12
Speaker 3: do things that you never thought you can do, and
13:13
Speaker 3: the reward is exceptional.
13:16
Speaker 2: Definitely. That's incredible your story about going over the handlebars
13:21
Speaker 2: and then coming I mean, how many people I wonder
13:25
Speaker 2: would have just gone, well, that's me done for the day.
13:28
Speaker 2: I would have just said, nah, I'm taking I mean
13:32
Speaker 2: a rib fractor as well. And you said it's suddenly
13:35
Speaker 2: a rib fracture. It's still a rib fracture. That's it's no,
13:40
Speaker 2: it's no bean me. But you're you talked about perseverance there.
13:45
Speaker 2: I do wonder how many people just said me and
13:47
Speaker 2: I'll call it a day and maybe try again next year.
13:51
Speaker 2: But that's that's an incredible story. Thank you so much,
13:54
Speaker 2: so much for sharing. And also when it comes to
14:00
Speaker 2: when it comes to training, and I talked a little
14:03
Speaker 2: bit about diets and was there anything in particular apart
14:07
Speaker 2: from dietary and taking on more fluids that you had
14:12
Speaker 2: to do specifically in your training because of hershbruns.
14:18
Speaker 3: Hydration was a big one and figuring out, you know,
14:23
Speaker 3: in the world of triathlon, there are probably any sports,
14:25
Speaker 3: there's a multitude of different companies, different brands of you know,
14:31
Speaker 3: nutrition that you can put in your bottle that includes protein,
14:33
Speaker 3: some that includes carbs, and it was figuring out which
14:36
Speaker 3: one I could tolerate well. Trial and error told me
14:39
Speaker 3: there wasn't many that I could eating on the bike.
14:42
Speaker 3: There's certain things my stomach could handle, certain things couldn't.
14:47
Speaker 3: I went through one triathlon with horrible diarrhea through the
14:51
Speaker 3: whole thing that was in Western Canada, and I I
14:56
Speaker 3: was basically like a dish rag by the time I past.
15:00
Speaker 3: But then I knew well that nutrition didn't work. So
15:03
Speaker 3: I kind of got to more holistic, plane very bland
15:07
Speaker 3: type options that I had to get through to have
15:12
Speaker 3: enough energy. And there were times where I'd be training
15:14
Speaker 3: and I would just lose energy. At calm my husband,
15:16
Speaker 3: I'm like, you have to pick me up. I'm just shot.
15:18
Speaker 3: I can't do it today. So when do you push?
15:20
Speaker 4: When do you not push?
15:23
Speaker 3: Because again I don't have the same absorption in my
15:26
Speaker 3: intestines like other people do. So learning what your boundaries
15:30
Speaker 3: are and how you overcome those is a big challenge
15:33
Speaker 3: when you're in sports. Whether you're a twelve year old
15:35
Speaker 3: in sports and trying to say hydrated on a hot day,
15:38
Speaker 3: or you know you're older and taking on, you know,
15:41
Speaker 3: higher level sports, you have to figure out how is
15:44
Speaker 3: my body going to react? Because it's not going to
15:46
Speaker 3: be the same as anybody.
15:47
Speaker 2: Else's definitely, And I'll touch on the third third part
15:53
Speaker 2: that we were going to talk about, as you are
15:55
Speaker 2: a pediatric nurse practitioner, So did I regime having all
16:01
Speaker 2: of that knowledge helped you in terms of your training
16:05
Speaker 2: for iron Man?
16:07
Speaker 3: Well, iron Man kind of came before that. So I
16:13
Speaker 3: think becoming a pediatrim herespectiher and talking to families about nutrition.
16:17
Speaker 3: I think there's certain aspects I can recollect in my mind.
16:21
Speaker 3: Although I don't have any active I don't have any
16:23
Speaker 3: patients that have Hirshprung's right now, more in other things
16:28
Speaker 3: that actually I feel like Kirshprung patients do deal with,
16:30
Speaker 3: whether it be constant patient diarrhea, you know, irritable bottle
16:33
Speaker 3: syndrome is a big thing that I deal with every day.
16:38
Speaker 3: But yeah, I think there's some downfall of really listening.
16:40
Speaker 3: I think the one thing as a g I nurse
16:45
Speaker 3: practitioner is that I try and listen. You need to
16:47
Speaker 3: listen to the families, listen to the child, what is
16:50
Speaker 3: their lived experience and how do you meet them at
16:53
Speaker 3: that point. I care the best for them, and I
16:56
Speaker 3: think walking in the shoes of GI challenges. I have
17:00
Speaker 3: some firsthand knowledge of you know, what are they feeling
17:03
Speaker 3: and how is it truly impact in their life? So
17:06
Speaker 3: I think that that's really helped me be a better
17:08
Speaker 3: provider by far.
17:10
Speaker 2: I think so yeah, I mean from what I've seen
17:13
Speaker 2: as well within that field, people who have experienced symptoms
17:19
Speaker 2: of IBD IBS then are more far more relatable as well.
17:26
Speaker 2: I think in both you've gone through a lot of
17:28
Speaker 2: those things. It then you can talk from lived experience,
17:34
Speaker 2: and obviously you have a lot of those lived experiences
17:38
Speaker 2: as well. When another question I was going to ask
17:43
Speaker 2: you as well, and you talked about becoming the practitioner
17:46
Speaker 2: after Iron, Matt, what made you think I really want
17:51
Speaker 2: to be a pediatric practitioner.
17:58
Speaker 3: So this stems back to when I was hospitalized as
18:01
Speaker 3: a child. You know, I had multiple infections and nutritional
18:06
Speaker 3: issues following my you know, total flectomy and iliostomy, and
18:11
Speaker 3: so during that time I had to nurse. Her name
18:14
Speaker 3: was Anne Rusche, who cared for me and got very
18:18
Speaker 3: close to my family and as I was growing up,
18:20
Speaker 3: she was at my birthday parties and when I went
18:22
Speaker 3: through nursing school, she hinded me in graduation. So she
18:27
Speaker 3: had followed that influence and the things that she did
18:30
Speaker 3: for me and my family as a nurse from a
18:33
Speaker 3: little on that inspired me to want to do the same.
18:37
Speaker 3: So I always wanted to be an pediatric nurse practitioner,
18:42
Speaker 3: specifically in GI so that I can give back the
18:46
Speaker 3: things that I received as a patient back to those
18:48
Speaker 3: families and have that understanding that I've walked in those shoes,
18:53
Speaker 3: and I feel like I have that gift to give
18:55
Speaker 3: back and help other families get their through their challenges
18:59
Speaker 3: and see their children improve and have a better quality
19:02
Speaker 3: of life.
19:03
Speaker 2: That's fantastic. That's really good to hear because I love
19:07
Speaker 2: talking to people who have been through all manner of
19:12
Speaker 2: whether it be illnesses, challenges, and what have you, and
19:15
Speaker 2: then think, actually, I want to give back. And there's
19:18
Speaker 2: so many people who've been on this podcast who goes
19:22
Speaker 2: through all manner of illnesses and then they think, actually,
19:26
Speaker 2: I want to give back in some way, whether it
19:28
Speaker 2: be charity work, whether it be in a medical field,
19:32
Speaker 2: whether it be just talking about their experiences. And that's
19:38
Speaker 2: one thing I'd really really love to see. I love
19:40
Speaker 2: to see people really give back because your knowledge is
19:46
Speaker 2: going to be unlike anybody else's knowledge. And I know
19:50
Speaker 2: we all have lived experiences, and we all have different experiences,
19:53
Speaker 2: and we all have unique experiences. But what you've done
19:57
Speaker 2: in terms of the Iron Man's and what you've done,
20:00
Speaker 2: we've seen in terms of a lot of things in
20:01
Speaker 2: your life, they're going to be unique. So you can
20:07
Speaker 2: pass that message on to somebody who might have gone
20:11
Speaker 2: through a similar thing. Potentially you mentioned as well in
20:15
Speaker 2: terms of you haven't seen anybody or haven't come across
20:19
Speaker 2: anybody with hirshbrungs And with it being sort of I
20:24
Speaker 2: say it's a rare disease, and it is a rare disease,
20:27
Speaker 2: but I also see one in five thousand, as to me,
20:33
Speaker 2: one per sort of small town in here in the UK,
20:36
Speaker 2: So it's rare, not sort of. We're not talking one
20:40
Speaker 2: in a million type type deal. Are you surprised slightly
20:43
Speaker 2: that you haven't seen anybody, especially dealing in GI disorders,
20:50
Speaker 2: haven't seen anybody with hirshbruns.
20:53
Speaker 3: A little I've had some babies that have exhibited some
20:59
Speaker 3: sybdumb you know, explosive stuel, not being able to pass
21:05
Speaker 3: stuel effectively after birth. I mean there's there's some kids
21:09
Speaker 3: that I have sent for work up even late stage,
21:12
Speaker 3: possible late stage for spruings which.
21:14
Speaker 4: Has come back negative.
21:15
Speaker 3: So I'm a I'm a little surprised, but yet I'm
21:17
Speaker 3: also relieved because you know, it's it's it's nice to see.
21:22
Speaker 3: Oh I think they may have it, but okay, it
21:24
Speaker 3: looks like they're not. We can take that off the table,
21:26
Speaker 3: as you know, something that could be contributing.
21:28
Speaker 4: But yeah, I am, I am.
21:30
Speaker 3: A little surprised, but hopefully we're intervening early and we're
21:33
Speaker 3: finding these children, you know, before the later stage diagnosis,
21:38
Speaker 3: and they're getting the appropriate treatment ahead of time, so
21:40
Speaker 3: that could be real. That's reassuring in that aspect.
21:43
Speaker 2: That's fantastic. It's really really good to see. And one
21:46
Speaker 2: thing that always tends to fascinate me is genetics in
21:51
Speaker 2: terms of if you have her strong and how likely
21:54
Speaker 2: is it to to pass on to children. For example,
21:58
Speaker 2: and you mentioned as we were talking, have two children
22:01
Speaker 2: who both without hirshbrus. Were you ever given like a
22:05
Speaker 2: percentage of this might happen might not happen in terms
22:12
Speaker 2: of hirshbrungs.
22:14
Speaker 3: Actually, I never did, and I don't know if you know,
22:16
Speaker 3: I was diagnosed in you know, nineteen seventy three, so
22:22
Speaker 3: you know, thinking back of what they knew or didn't
22:24
Speaker 3: you know at that time. But we don't have anybody
22:28
Speaker 3: in my family that had it, so there's no we
22:30
Speaker 3: have no idea where it came from. There's no way
22:32
Speaker 3: to trace it back. I was considered high risk when
22:36
Speaker 3: I had both my children, and they did watch very
22:40
Speaker 3: closely for that. So I'm very grateful that they're both
22:43
Speaker 3: healthy kids and never had that issue. Yeah, I don't
22:47
Speaker 3: feel like that's talked about enough. Was the genetic component,
22:51
Speaker 3: And then I sometimes that, you know, back in my mind,
22:53
Speaker 3: I even question is it fully genetic? I guess because
22:55
Speaker 3: in my experience, we don't know. It could be a
22:58
Speaker 3: very distant relative as well that we don't know about.
23:01
Speaker 3: But yeah, I think that's an interesting topic that I
23:05
Speaker 3: see discussions about Hirshbrungs, and that's not always something that's
23:08
Speaker 3: brought up.
23:09
Speaker 4: They call it genetic, but the in depth conversation.
23:11
Speaker 3: I think is something that should be brought to the
23:13
Speaker 3: table more than it is.
23:16
Speaker 2: I think. So I think it's just something that I
23:19
Speaker 2: often think about just purely from a personal point of view.
23:24
Speaker 2: It's because I like you. I'm the only person with
23:27
Speaker 2: hirshbrungs in my family, extended family. You had no idea
23:32
Speaker 2: where it came from. My parents had two children after me,
23:37
Speaker 2: both without hirshbrungs. My older brother doesn't have hirshbrungs, so
23:41
Speaker 2: it's I mean, in terms of the stats, it's roughly
23:46
Speaker 2: one in four. My parents had four children and I
23:50
Speaker 2: was the unlucky one, so it's kind of but it
23:56
Speaker 2: always fascinates me. Always fascinates me because I haven't speaking
24:00
Speaker 2: to people who have hirshprungs themselves and then have children
24:03
Speaker 2: and they have hirshprungs or have children and they don't
24:07
Speaker 2: have hirshbrums. So it's it's something. And especially with you
24:11
Speaker 2: working in in g I, the an old pediatric g
24:17
Speaker 2: I always always fascinates me. Whether you've been told a percentage,
24:22
Speaker 2: know the percentage or have you but no that that's
24:27
Speaker 2: that's fantastic. Thank you. In terms of as well, if
24:31
Speaker 2: I flick back a little bit towards the iron Man,
24:34
Speaker 2: I know you you mentioned one particular story about falling
24:38
Speaker 2: off a handle the huzz and then and then fracturing
24:42
Speaker 2: a rib. Was there was there any other stories or
24:46
Speaker 2: any other incidents, and there could be hirshprungs or non
24:49
Speaker 2: Hershbrungs related that you'd like to share as well. From
24:53
Speaker 2: your Iron Man journeys, you know.
24:58
Speaker 3: As far as different aspects of the races, I think
25:02
Speaker 3: you know for me personally, whether it was the condition.
25:06
Speaker 3: I mean, I have race from you know, Whistler, Canada,
25:10
Speaker 3: down to Lousville, Kentucky, and you know, it's the conditions
25:14
Speaker 3: that you're racing, whether it's an altitude it's or it's.
25:19
Speaker 4: Being heat induce.
25:21
Speaker 3: I did some training in Colorado with Man Hanson's team,
25:25
Speaker 3: who was a he's one of the iron ar tref
25:28
Speaker 3: On pros and the heat, in humidity in the clients
25:32
Speaker 3: and the altitude in Colorado was quite challenging for me.
25:35
Speaker 3: And it's frustrating because you see other people you know
25:38
Speaker 3: you're training, you know you're there, but they're going past
25:41
Speaker 3: you and you're like, what's going on? I don't have
25:43
Speaker 3: any energy? And so did I prep? It's the prep
25:45
Speaker 3: ahead of time? It did I hydrate several days ahead
25:49
Speaker 3: of time. It's not like somebody who can hydrate the
25:50
Speaker 3: day before and be fine. Does it work that way?
25:54
Speaker 3: And you know, do you have enough sodium. That was
25:57
Speaker 3: one challenge I had is it seemed like I low
26:00
Speaker 3: still a lot of sodium and keeping that in check.
26:03
Speaker 3: So yeah, that was I think even water condition, you
26:08
Speaker 3: know the effects of blue grain alergae, what that would
26:11
Speaker 3: do to me versus someone else, And so I had
26:15
Speaker 3: that experience trained for. Was going for my fourth iron
26:18
Speaker 3: Man at Madison, Wisconsin and got violently ill in the
26:22
Speaker 3: water after the first past. We did two loops in
26:26
Speaker 3: the water for the full After the first one, I
26:28
Speaker 3: was throwing up in the water. Turned out there were
26:32
Speaker 3: others that got sick, but it was possible blue grain alergae.
26:37
Speaker 3: And so it's just things like that. You know, is
26:39
Speaker 3: the water clear. Going to Whistler, it was nice and clear.
26:41
Speaker 3: I didn't worry about that as much because I know
26:44
Speaker 3: it's not just going to be a little illness. It's
26:46
Speaker 3: going to be a lot of honest for me. So
26:49
Speaker 3: all of those environmental factors.
26:52
Speaker 2: So I suppose it's one of those things where can
26:55
Speaker 2: be a little bit on the day thing you can
26:58
Speaker 2: only worry about so much and only pay for so much.
27:01
Speaker 2: We can't imagine you could do a lot of preparation
27:04
Speaker 2: for Blee Green algae.
27:06
Speaker 4: No, no, you can't.
27:08
Speaker 3: And I think how one of the things that that
27:12
Speaker 3: I look back at triathlon is you know the other
27:16
Speaker 3: people that you run next to, talking to people who
27:19
Speaker 3: are cancer survivors, and you think, you know, I thought
27:22
Speaker 3: to myself, yeah, I don't have a colon, but look
27:26
Speaker 3: at what they've gone. So I think it puts your condition.
27:30
Speaker 3: Not that I'm lessening first one disease in the least,
27:34
Speaker 3: but you have to think about you know, all of
27:36
Speaker 3: us have our challenges, and you know, you come across
27:39
Speaker 3: these people and you bond with them, whether it's talking
27:42
Speaker 3: on the run portion or you're in transition prepping in
27:46
Speaker 3: the morning before the race, and everybody has a purpose
27:49
Speaker 3: and a reason to be there. So that's for the
27:53
Speaker 3: community piece. I think of sports in general that you
27:56
Speaker 3: can find people that have had different challenges yet you're
27:59
Speaker 3: similar in so aspects and you bond and you support
28:02
Speaker 3: each other.
28:02
Speaker 4: Wow.
28:04
Speaker 3: And I think just in sports and traffon in general,
28:06
Speaker 3: that's what I found and now was my happy place.
28:10
Speaker 2: Definitely definitely that I'll bring up a couple of points
28:13
Speaker 2: that you mentioned that are really good there as we're
28:16
Speaker 2: recording now. Not by the time people hear this, but
28:18
Speaker 2: as we're recording now, the Paralympics Apparalympic Games is going
28:22
Speaker 2: on at the moment, and it always I love watching
28:26
Speaker 2: the Paralympics. Always fascinates me about how people find a
28:32
Speaker 2: way round competing in different sports. And it can be
28:36
Speaker 2: whatever the bit, whether you need the sport adapting or
28:40
Speaker 2: whether they've they've found special equipment or whatever it might
28:43
Speaker 2: be to adapt and make sure that they take part
28:47
Speaker 2: and take part at a really high level. It's something
28:50
Speaker 2: that absolutely fascinates me. Have you caught any of the
28:54
Speaker 2: Paralympics has been going on.
28:57
Speaker 3: I've just seen a couple of updates. My youngest is
29:01
Speaker 3: starting as a senior this year and so we've been
29:04
Speaker 3: quite busy. But yeah, I did see a couple of
29:09
Speaker 3: some of the athletes. The triathlon was I think postponed
29:13
Speaker 3: at this point because the water conditions there, so I
29:16
Speaker 3: was kind of kind of watching that on the app.
29:19
Speaker 3: But yeah, I think to your point, it's not the handicap,
29:23
Speaker 3: it's it's the mental fortitude and that's what can push
29:27
Speaker 3: you through anything. So I saying I think having Hirshburgs
29:33
Speaker 3: disease because it gave me I think on a mental
29:36
Speaker 3: capacity that maybe I don't know if I would have had.
29:40
Speaker 3: So I do appreciate having that disease. And when they
29:44
Speaker 3: talk about Hirshpruings Warrior, especially this month right in September,
29:51
Speaker 3: it brings it a sense of I don't know, kind
29:54
Speaker 3: of calmness, like, hey, yeah, I truly am of Hushprings Warrior,
29:57
Speaker 3: and thank you hirs Springs for you know, unfortunately I
30:00
Speaker 3: was chosen to have one of those. But the outcome is,
30:03
Speaker 3: I think there's positives that we have to focus.
30:05
Speaker 4: On as well.
30:06
Speaker 2: I do I echo that, definitely echo that. I don't
30:10
Speaker 2: know whether it's the same for you, but for me,
30:12
Speaker 2: what has given me is incredible high tolerance to pain.
30:16
Speaker 2: So going through a lot of surgeries before the age
30:20
Speaker 2: of two, I think it was about seven surgery something
30:23
Speaker 2: or other for the age of one or two, that
30:26
Speaker 2: then suddenly you know, lots of things that hurt other
30:29
Speaker 2: people don't hurt you, and you have a very high
30:33
Speaker 2: pain threshold and that can really help for the sports
30:36
Speaker 2: as well. You did you find that you will also
30:38
Speaker 2: had a high pain threshold?
30:40
Speaker 3: Yeah, definitely. I think you can put things in the perspective,
30:44
Speaker 3: is this too shall pass? Right, So I'm healing, you know,
30:48
Speaker 3: like with the fractured red there are many nights I
30:50
Speaker 3: had to sit up in bed because I was so uncomfortable.
30:53
Speaker 3: My husband would kind of help me sit up in bed.
30:56
Speaker 3: But I'm like, this will pass. The stinks right now,
30:58
Speaker 3: but a little bit. So yeah, I think, you know,
31:01
Speaker 3: on several tree flands, I had issues where you know,
31:06
Speaker 3: whether it's having stomach upset or a knee injury or
31:10
Speaker 3: something that I was challenged with during the race. I'm like, hey,
31:13
Speaker 3: as long as I get to the finish line, that's
31:14
Speaker 3: all that matters. And I can get there, I have
31:16
Speaker 3: to walk, and I can't run, then a walk. So yeah,
31:20
Speaker 3: I think there's a mental component to this that is
31:23
Speaker 3: sometimes underrated. And I think of one of the people
31:28
Speaker 3: that you interviewed, Gemma. Is it Gemma that had the
31:32
Speaker 3: abilities book.
31:35
Speaker 2: I haven't interviewed her yet, but I'm hoping to. She
31:38
Speaker 2: has just written a book as we talk now, she
31:42
Speaker 2: has just written a book and it's just come out
31:44
Speaker 2: about Hirshprung's disease. Yes, Jemma Kia, She's yeah, fantastic, really
31:49
Speaker 2: really talented. Yeah, hope hopefully I have spoken to her
31:52
Speaker 2: a futiles, but hopefully get her on the podcast soon
31:56
Speaker 2: when she stopped doing media appearances. I think.
32:00
Speaker 3: I saw it everage. I saw it on Facebook and
32:02
Speaker 3: I ordered the book. It's sitting in hopefully here soon.
32:06
Speaker 3: But yeah, that you know things like that. I think
32:08
Speaker 3: the Abilities book, that's such a awesome need that applies
32:12
Speaker 3: to this. It's an ability, it's not a disability. It's
32:14
Speaker 3: not it's not something that's going to hold you back
32:17
Speaker 3: in life.
32:18
Speaker 2: Definitely. No, that's one of the things that drew me
32:21
Speaker 2: to the book as well. I mean, she has done
32:24
Speaker 2: so many books about so many different different illnesses and
32:31
Speaker 2: different there were things like Hirshbrun's as well, and and
32:36
Speaker 2: I love the fact that it's called The Abilities in
32:38
Speaker 2: Me and not disability or whatever it. But no, we did.
32:44
Speaker 2: I have mentioned her on this podcast before because as
32:48
Speaker 2: some people who may be listening to this might've also
32:51
Speaker 2: listened to my episode with English actor Louis Healy, whose mum,
32:58
Speaker 2: Denise Welch, is one of the patrons for Gemma's One
33:03
Speaker 2: for the Abilities in Me Foundation. She does a lot
33:07
Speaker 2: of work, a lot of promotional work, and also attend
33:10
Speaker 2: I think she attended one of the gatherings parties they
33:14
Speaker 2: that they had as well. So but yeah, those they
33:18
Speaker 2: are fantastic books. And with the Hirshbruns and one coming
33:21
Speaker 2: out I think as we talk now in the third
33:24
Speaker 2: of September, it came out a few days ago. I
33:26
Speaker 2: believe I know my one arrived. I posted that it
33:29
Speaker 2: had arrived, so if you've seen my Instagram then I
33:34
Speaker 2: took a picture of it. But it's such a it's
33:37
Speaker 2: such a lovely book and honest, honestly, for for anybody
33:41
Speaker 2: who has a child with hirschbrongs, it's it's a very
33:45
Speaker 2: child friendly book and it does go it does tell
33:48
Speaker 2: the story really really well. So if anybody does have
33:53
Speaker 2: a child with Hirshbruns, or if you're just an adult
33:55
Speaker 2: with chursch Bruns like me and you just wanted to
33:57
Speaker 2: read the book to see what it looked like, it's
33:59
Speaker 2: it's definitely it's definitely well worth well worth a read.
34:03
Speaker 2: I believe I have it. It will be on on
34:05
Speaker 2: Gem's Instagram anyway, but I believe I have it pinned
34:08
Speaker 2: on mine somewhere. Believe that if I don't, I'll do
34:12
Speaker 2: it now. But no, it really is is a fantastic
34:16
Speaker 2: book and another point actually on that as well, that
34:20
Speaker 2: I wanted to ask you with. Obviously you've seen hirsh
34:24
Speaker 2: brungs sort of for a while. In terms of it
34:31
Speaker 2: being visible, how has that grown over the years.
34:38
Speaker 3: I think it's less visible. I don't feel like I
34:44
Speaker 3: think a younger ages. I feel like there it may
34:46
Speaker 3: have defined me in a way, not so much anymore.
34:51
Speaker 3: I feel it's a strength. My scars are somewhat of
34:55
Speaker 3: a roadmap of where I've been, but it's allowed me
34:59
Speaker 3: to get to where I I am. I mean, it
35:01
Speaker 3: could have turned out much worse. We know that some
35:05
Speaker 3: people are. You know, Hirshprungs can cause great infection and
35:09
Speaker 3: it can subsequently take your life. So I don't feel
35:14
Speaker 3: it defines me. I feel like it empowers me.
35:16
Speaker 2: But this is definitely nice. Definitely, And in sort of
35:19
Speaker 2: media wise, and we talked about Jemma's book in terms
35:23
Speaker 2: of seeing in media on Facebook, on Instagram and around,
35:27
Speaker 2: how do you think that's changed over the years.
35:30
Speaker 3: I feel like it's more prevalent. You know, some of
35:33
Speaker 3: the conversations recently, I saw I'm one of the Hirshprungs
35:36
Speaker 3: disease pages recently that astonished me. Because I always thought, oh, geez,
35:42
Speaker 3: you know, some people die from hirshbrungs because of a
35:44
Speaker 3: testinal failure later in life. But you know, there was
35:47
Speaker 3: a woman that recently commented that she's eighty eight years
35:49
Speaker 3: old hushprung survivor, and like that is that's whole right there.
35:56
Speaker 3: I think those having those conversations and people chime in,
35:59
Speaker 3: I'm forty seven, I'm you know how old, and this
36:02
Speaker 3: is how long I've had in and I'm doing great
36:04
Speaker 3: eighty that eighty eight, you're a woman, And that impacted hugely, like, okay,
36:10
Speaker 3: this is this is not something that that is going
36:12
Speaker 3: to necessarily have to cause a problem later in life
36:14
Speaker 3: and resulted more disability, whether it be you know, intestinal
36:18
Speaker 3: failure or malnutrition or something like that. So that's encouraging.
36:24
Speaker 3: So I think there's more conversation very no.
36:27
Speaker 2: I I know, obviously doing this podcast, I'm going to
36:29
Speaker 2: see it a lot more than than not. But certainly
36:34
Speaker 2: I've seen just news wise and just people coming across
36:38
Speaker 2: hirshprungs more, maybe not quite understanding all of it, because
36:43
Speaker 2: sometimes it can be a lot to get your head around,
36:46
Speaker 2: especially when you're talking about sort of four different types
36:49
Speaker 2: as well. So, but but I think it has grown
36:55
Speaker 2: a lot more, which which is fantastic, which I really
36:58
Speaker 2: really love seeing. And then just as we sort of
37:01
Speaker 2: wrap up, finally you mentioned we talked quite a bit
37:05
Speaker 2: about iron Man's and congratulations on those, by the way, fantastic.
37:11
Speaker 2: Do you have you retired from iron manning if that's
37:14
Speaker 2: a word, or or are you planning to do anymore?
37:22
Speaker 3: I think it's to be determined at this point, going
37:25
Speaker 3: back to school, getting my nurse practitioner. My oldest son
37:30
Speaker 3: is off in life and doing great uh in Sacramento
37:34
Speaker 3: and college graduate, which I'm very proud of. My daughter
37:38
Speaker 3: is kind of heading down that path, and I feel
37:40
Speaker 3: like once she's situated, that might be an opportunity for
37:43
Speaker 3: me to start back again. Of course back at sprints.
37:46
Speaker 3: I'm not going to jump into the deep water right away,
37:50
Speaker 3: but also just considering it is a lot of weird
37:53
Speaker 3: tear in your body, And so what point do you
37:55
Speaker 3: say I love the sport. I want to be a
37:58
Speaker 3: saying of the sport, but you know, I want to
38:01
Speaker 3: make sure that I'm not doing more harm than good
38:04
Speaker 3: because it is very stressful and stressed with euber ball
38:07
Speaker 3: syndrome can be difficult, So yeah, I'm hoping maybe I
38:13
Speaker 3: can get back into it when when things settle down
38:15
Speaker 3: in life. Yep, the kids were off and I'm an
38:17
Speaker 3: empty nester.
38:18
Speaker 2: So yeah, Plastic, Well, well you'll have to let us know.
38:21
Speaker 2: You'll have to let us know if you if you
38:23
Speaker 2: ever get the urge to get back, and we'll we'll
38:26
Speaker 2: cheer you on and promote it made you. Also, do
38:31
Speaker 2: your children do iron Man's as well? If they taken up,
38:34
Speaker 2: have they taken up in your lead or they have
38:37
Speaker 2: left eyebads alone?
38:40
Speaker 3: So my kids have done Traslons. My daughter did one
38:43
Speaker 3: when she was relatively young, like seven, My son did some.
38:48
Speaker 3: My husband has done a couple, not iron Man but triathlon.
38:52
Speaker 3: And but my son is a huge micer and runner daily,
38:57
Speaker 3: so he's he's gotten part of that. Bug is never
39:00
Speaker 3: a band of the swimming. My daughter is not a
39:02
Speaker 3: fan of biking, but she is a runner. So they've
39:04
Speaker 3: taken elements of that that. You know, hopefully I've encouraged
39:07
Speaker 3: along and they've been great supporters when I was racing,
39:11
Speaker 3: So yeah, I feel like just the healthy part of
39:15
Speaker 3: it has passed on to them as well.
39:17
Speaker 2: That's fantastic. So they're both sort of heavily into geoathlons
39:20
Speaker 2: as such.
39:22
Speaker 3: Yeah, yeah, yeah, fantastic.
39:25
Speaker 2: And that must be so great to see as well.
39:27
Speaker 2: You've inspired them to do gewo athlons and to take
39:31
Speaker 2: up biking, take up running, swimming, whatever it might be.
39:36
Speaker 2: Do you think you've also passed down your perseverance and determination,
39:39
Speaker 2: because I know you've spoken about that a lot as well.
39:43
Speaker 3: Yeah, I think so. I think the model Fironman that
39:46
Speaker 3: I lived by still is anything as possible, So you
39:50
Speaker 3: can't rule anything out. You have to push forward and
39:53
Speaker 3: tell you know, the door slams in your face, you've
39:56
Speaker 3: foud another one to open. And that's what I tell
39:57
Speaker 3: my kids, and I know that my son, where he's at,
40:01
Speaker 3: he definitely has that grasp that concept pretty well. My
40:05
Speaker 3: daughter continues to but I think she's so growing and thriving.
40:09
Speaker 3: So yeah, I think there's aspects of iron Man in sports,
40:13
Speaker 3: as you probably know, that have excellent elements that you
40:17
Speaker 3: can pass on and there are great lessons that you
40:20
Speaker 3: learn along the way. You may not do well at
40:22
Speaker 3: one race, but that doesn't mean the next race is
40:24
Speaker 3: going to be the same, and.
40:25
Speaker 2: So you you keep moving forward absolutely, and that's a
40:29
Speaker 2: wonderful sentiment to finish on. I just wanted to say
40:33
Speaker 2: thank you so so much for coming on. I know
40:36
Speaker 2: when you messaged, I thought, I absolutely have to have
40:39
Speaker 2: you on the diversities dot I Abound, hirsh Bruns all
40:43
Speaker 2: sorts of g I practitioner and hopefully we've covered all
40:47
Speaker 2: three of those in a bit more depth as well.
40:50
Speaker 2: But yes, I felt you're absolutely perfect for this podcast.
40:54
Speaker 2: So Joe, just for me, thank you for everything you
40:57
Speaker 2: do in the nurse practition world, and thank you for
41:01
Speaker 2: coming on the podcast.
41:03
Speaker 3: Great. Thank you so much for having me. I appreciate
41:05
Speaker 3: it time.
41:09
Speaker 1: Thank you for listening to the podcast. Find us on
41:12
Speaker 1: Instagram Tom's Underscore Hirshbrun's Underscore podcast. Listen to previous episodes
41:17
Speaker 1: on Spotify by searching Tom's Hirshbrun's Podcast