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Episode 140 - With Stephanie Dolak · Tom's Hirschsprung's Podcast

0:02
Speaker 1: You are listening to Tom's Hirschsprungs podcast, a space where
0:05
Speaker 1: we talk openly about living with Hirschsprungs disease. Whether you
0:09
Speaker 1: live with it, care for someone who has it, or
0:12
Speaker 1: just want to understand more, this podcast is for you.
0:15
Speaker 1: Each episode we will explore real stories and honest conversations
0:19
Speaker 1: about a condition that often goes unheard. Thank you for
0:22
Speaker 1: tuning in. Hello and welcome to episode 140 of Tom's
0:47
Speaker 1: Hirschsprung's podcast. I'm delighted to be joined by somebody who
0:52
Speaker 1: I've really wanted on the show for quite a while now.
0:56
Speaker 1: A fellow radio presenter, I like myself now. Welcome Stephanie,
1:02
Speaker 1: welcome to the podcast.
1:03
Speaker 2: Hello, how are you?
1:05
Speaker 1: Thank you so much. Brilliant. Thank you so much for
1:07
Speaker 1: coming on. You've got a really, really interesting story for
1:12
Speaker 1: anybody who's not sort of come across your Hirschsprung's journey.
1:17
Speaker 1: I'm really looking forward to delving into this because this
1:21
Speaker 1: is going to be really, really interesting. But yeah, please,
1:25
Speaker 1: over to you. Start from wherever you feel you want to.
1:30
Speaker 3: So for me, the story began actually by my parents, unfortunately,
1:37
Speaker 3: having the experience of going through being told to take
1:40
Speaker 3: me home, make me comfortable. And there was really nothing
1:45
Speaker 3: else that they could do.
1:46
Speaker 2: So I was actually born in a small hospital in.
1:54
Speaker 3: A smaller town at the time so there weren't many
1:58
Speaker 3: resources or anything like that and so the more I
2:03
Speaker 3: kept showing up at the hospital and like I was
2:06
Speaker 3: in the NICU when I was first born and all
2:07
Speaker 3: that but they just didn't have the knowledge that was
2:13
Speaker 3: needed in order to one diagnose me or two just
2:16
Speaker 3: to know what to look for and what was going
2:19
Speaker 3: on so I was actually medevaced to Pittsburgh Children's in
2:24
Speaker 3: Pennsylvania after six months of age.
2:28
Speaker 2: And that's when I was diagnosed pretty quickly and then
2:32
Speaker 2: had the first surgery of a few.
2:34
Speaker 3: As many of you know, Hirschsprung's isn't always quote unquote
2:40
Speaker 3: fixed within one surgery. It takes multiple and then there's
2:43
Speaker 3: the management of any complications and all that. So My parents, fortunately,
2:51
Speaker 3: had family in both areas. So my dad is actually
2:54
Speaker 3: from Erie, Pennsylvania. My mom is from Pittsburgh, Pennsylvania. So fortunately,
3:01
Speaker 3: it didn't really matter where we were at, whether we
3:04
Speaker 3: were living in Erie at the time or we were
3:06
Speaker 3: visiting in Pittsburgh. We had family we could stay with
3:10
Speaker 3: or be around and all that.
3:12
Speaker 2: Or at least my parents did because I was in
3:14
Speaker 2: the hospital. So.
3:16
Speaker 3: But at Pittsburgh, they were able to diagnose me and
3:20
Speaker 3: start to get me situated. And then at about two
3:24
Speaker 3: years of age, we actually moved to the Chicagoland area.
3:27
Speaker 2: And I had.
3:30
Speaker 3: The benefit of having an amazing surgeon follow me throughout
3:35
Speaker 3: my childhood, Dr. Marletta Reynolds, who unfortunately I cried for
3:42
Speaker 3: a good day when I got her letter of retirement.
3:46
Speaker 3: And I was just so sad because she is an
3:50
Speaker 3: amazing human being who just has this breadth of knowledge
3:54
Speaker 3: that we need. Our community just, we suffer when that
3:59
Speaker 3: knowledge kind of goes away and, you know, whatever. But
4:06
Speaker 3: so in Chicago, I actually was followed throughout my childhood,
4:11
Speaker 3: but I had already had the Martin Duhamel revision.
4:16
Speaker 2: At that time.
4:17
Speaker 3: So I'm actually diagnosed with initially total colonic heart sprungs
4:22
Speaker 3: with small bowel involvement. So I have a good portion
4:25
Speaker 3: of my small bowel that was also removed along with
4:30
Speaker 3: the entirety of my colon. And then more recently, I
4:36
Speaker 3: had more complications. I've had about four intestinal obstructions that
4:42
Speaker 3: have landed me in emergency situations in various hospitals. and
4:48
Speaker 3: required surgery to remove the obstruction or to fix the
4:53
Speaker 3: adhesion or remove the adhesions ultimately, because that was more
4:58
Speaker 3: often than not the reason for the obstructions was actually
5:02
Speaker 3: adhesion growth.
5:03
Speaker 2: So, and then that was pretty much between.
5:08
Speaker 3: Kansas and here, because of course, I didn't move straight
5:11
Speaker 3: back home after college.
5:13
Speaker 2: I have had a little bit of a route around
5:17
Speaker 2: the nation. So we'll, we'll cover that later.
5:20
Speaker 3: Cause that that's more fun knowledge, but I, um, had
5:27
Speaker 3: the Martin to Hamill revision, which helped.
5:32
Speaker 2: For the most part throughout childhood. It was, it mostly
5:35
Speaker 2: relied on more management.
5:37
Speaker 3: So I went through like the central line and the
5:40
Speaker 3: G tube and, the NG tube before the G tube
5:44
Speaker 3: to see if the feeds would work and help. And
5:47
Speaker 3: I had the benefit and fortune at the time to
5:52
Speaker 3: actually come off those feeds for college. So I actually
5:57
Speaker 3: had a good four years of what I call somewhat
6:01
Speaker 3: normative experience because it wasn't normal, but it was more
6:06
Speaker 3: normal than having to like hook up to feeds every
6:09
Speaker 3: night and all that. So What were irrigations and all
6:13
Speaker 3: the lovely extra things we have to do throughout childhood
6:18
Speaker 3: to be able to sustain and hopefully get the best
6:22
Speaker 3: nutrition that we can, depending on how.
6:25
Speaker 2: Much of our gut is affected by the harsh storms.
6:29
Speaker 3: So I did have fun in college with that. But
6:34
Speaker 3: going back to where I'm at now, just so you
6:36
Speaker 3: have like a rough timeline. When I hit about my
6:42
Speaker 3: late 30s, I started having more complications, more pain that
6:47
Speaker 3: was recurrent and would last longer. And so we ended
6:52
Speaker 3: up opting for an ileostomy surgery to see if that
6:56
Speaker 3: would help heal some of the inflammation and take out
6:59
Speaker 3: the J pouch that had been formed. And what we
7:03
Speaker 3: had found was actually the cells of the J pouch were.
7:06
Speaker 2: Slowly dying off. And so I wasn't able to actually
7:10
Speaker 2: empty the J pouch. It was just retaining.
7:13
Speaker 3: So there was stuff in there that we don't know
7:16
Speaker 3: how long it had been in there. So it just
7:18
Speaker 3: wasn't emptying. And that's actually what was causing a lot
7:22
Speaker 3: of my symptoms, or so we thought. And so the
7:26
Speaker 3: ileostomy was hopeful to kind of take some of that
7:31
Speaker 3: pain and hopefully clear up some of the ulcers and
7:35
Speaker 3: cysts that I had been forming throughout the years and
7:40
Speaker 3: in the meantime they were also able to clean up
7:42
Speaker 3: the adhesions that would have more than likely created another
7:48
Speaker 3: likely episode needed for emergency surgery so thankfully I didn't
7:53
Speaker 3: need another one.
7:54
Speaker 2: I just had the planned surgery, which I was not
7:58
Speaker 2: used to.
7:58
Speaker 3: Being able to plan a surgery versus just go one night.
8:02
Speaker 2: Oh my gosh, something's wrong.
8:05
Speaker 3: We need to go in is so much different than, okay,
8:08
Speaker 3: we have a month to prepare.
8:09
Speaker 2: What do we need? Where do we need to go?
8:12
Speaker 3: You know, so much different and a lot easier to
8:16
Speaker 3: manage both mentally and just with the rest of the
8:19
Speaker 3: family too. So yeah, That was kind of nice. But
8:23
Speaker 3: ever since the ileostomy surgery, unfortunately for me, things have
8:26
Speaker 3: continued to go downhill. So I am now TPN dependent.
8:33
Speaker 2: I'm on.
8:37
Speaker 3: A maximum of six nights a week TPN feeds. Because
8:41
Speaker 3: unfortunately for me, I also have the luck of getting
8:45
Speaker 3: pain from TPN as well as eating orally. over the
8:52
Speaker 3: course of the night, even though I try to empty
8:55
Speaker 3: either my ileostomy or my bladder, I have the joy
9:00
Speaker 3: of like pain just kind of increasing throughout the night.
9:06
Speaker 3: So by the time we hit morning, I'm usually just
9:11
Speaker 3: more spent than when I went to bed, which is
9:14
Speaker 3: always fun.
9:16
Speaker 2: But that's kind of where we're at now.
9:18
Speaker 3: So now we actually have been going through referrals and
9:24
Speaker 3: trying to see if a intestinal transplant is the next step.
9:31
Speaker 2: And I am so lucky that I've had the.
9:36
Speaker 3: Opportunity to meet several doctors because I was not going
9:40
Speaker 3: to take just one team's opinion. I wanted at least
9:44
Speaker 3: two teams of opinion and I was trying to get
9:48
Speaker 3: three but one has kind of dropped off for various
9:51
Speaker 3: for a few reasons which I mean as we know
9:54
Speaker 3: in healthcare, things happen. So you just take the hits
9:59
Speaker 3: and you try to move on. But one team seems
10:03
Speaker 3: to think and has already evaluated and said, yes, you
10:09
Speaker 3: are kind of out of option. Transplant is the next step.
10:13
Speaker 3: Whereas the other team will do their evaluation in September,
10:17
Speaker 3: but have We've kind of had some discussions and are
10:24
Speaker 3: kind of coming to this conclusion of let's try to
10:28
Speaker 3: figure something out because transplant for me is a very
10:33
Speaker 3: last resort option because that's something you can't take away.
10:39
Speaker 2: It's once you do it, it's done. There is no
10:43
Speaker 2: going back.
10:43
Speaker 3: So like anyone that knows me, that went to college
10:47
Speaker 3: with me or grew up with me knows that food
10:51
Speaker 3: and the experience of eating is like 80 to 90%
10:56
Speaker 3: of my personality. I absolutely love food. And we joke
11:02
Speaker 3: because I used to be a great cook, but now
11:05
Speaker 3: like my husband is the one that cooks. So we
11:08
Speaker 3: call him my personal chef. And I just sit there
11:12
Speaker 3: and I try to enjoy the meals that I do
11:14
Speaker 3: eat because now I'm down to about a meal a
11:16
Speaker 3: day that I can handle and tolerate. Hence the TPN
11:21
Speaker 3: and why it's been needed to help supplement and support
11:24
Speaker 3: those feeds. So it's been an interesting but rollercoaster ride,
11:30
Speaker 3: both physically and mentally. So that's kind of where we're
11:34
Speaker 3: at now.
11:34
Speaker 2: It's kind of in like this holding pattern of, so
11:38
Speaker 2: what do we do next?
11:40
Speaker 1: Yeah, most definitely. I mean, that's for a story as well.
11:45
Speaker 1: I mean, it's a story you don't hear very often.
11:50
Speaker 1: I mean, especially with sort of total colonic plus, I mean,
11:55
Speaker 1: you're in, not only do you have one of the
11:58
Speaker 1: rarest conditions in terms of the one in 5,000 and whatnot,
12:02
Speaker 1: but also total colonic. I mean, you're looking at, From
12:07
Speaker 1: the research I've done, less than 1% of the one
12:10
Speaker 1: in 5,000, whatever that may be.
12:12
Speaker 3: Have you come across, I'm curious what your knowledge has been,
12:18
Speaker 3: because you have a different audience, like you've talked to
12:21
Speaker 3: different populations and things like that. So during my ileostomy surgery,
12:26
Speaker 3: they actually found not only was it small bowel involvement,
12:31
Speaker 3: but it's actually intermittent small bowel involvement. So it wasn't
12:36
Speaker 3: like in a sequence. It's like a little bit here,
12:39
Speaker 3: a little bit here, and a little bit here. So
12:43
Speaker 3: hence why we're kind of going through this intestinal transplant
12:46
Speaker 3: evaluation to see if that's actually the next step.
12:49
Speaker 2: Because in their words, Hirschsprung says just kind of caught
12:55
Speaker 2: up to me. Where it's like now the.
12:58
Speaker 3: Information from like those ganglion cells not being able to
13:01
Speaker 3: do their job.
13:03
Speaker 2: Has just gotten to the point where.
13:06
Speaker 3: Now you've got this section that is completely inflamed and
13:09
Speaker 3: you have this section that is. And so how do
13:11
Speaker 3: we make the pieces that do work work? And how
13:14
Speaker 3: do we, you know, work with.
13:16
Speaker 2: The ones that don't? So, yeah, I don't know.
13:20
Speaker 3: Have you heard of that? Because this was one of
13:22
Speaker 3: the first times I've heard of that. And it was
13:25
Speaker 3: my history.
13:27
Speaker 1: Yeah, I mean, that sounds, correct me if I'm wrong,
13:30
Speaker 1: but it sounds sort of skip segment. like yes yes
13:34
Speaker 1: which which again is a is a um less than
13:38
Speaker 1: one and less than one percent so that i mean
13:42
Speaker 1: that that is yeah that's that's that's incredibly rare i
13:48
Speaker 1: mean incredibly rare and i know you you were talking
13:51
Speaker 1: to total colonic whether it's total colonial with skip segment
13:56
Speaker 1: um you've also got the plus sign in there as
13:59
Speaker 1: well and that i mean that that having talked to
14:02
Speaker 1: many people who have the plus sign in there as well,
14:05
Speaker 1: I mean, that could mean a multitude, a multitude of
14:09
Speaker 1: different things, whether that's small bowel involvement, whether that's some
14:14
Speaker 1: other parts as well. So, I mean, yeah, this is
14:18
Speaker 1: also why I really, really wanted to chat to you
14:20
Speaker 1: because I don't think I've ever come across somebody who's
14:23
Speaker 1: had quite so many possibly different diagnoses or sort of
14:30
Speaker 1: different or who's presented in a certain way for their Hirschsprungs,
14:35
Speaker 1: I don't think I've met anybody. And I've met a
14:38
Speaker 1: lot of people.
14:40
Speaker 3: Well, and that's what makes it difficult when it comes
14:43
Speaker 3: to the diagnosing part and the finding practitioners that are
14:47
Speaker 3: willing to work with me and willing to take on
14:51
Speaker 3: the struggle and the networking that's going to have to
14:57
Speaker 3: take place in order to get the information that is needed.
15:02
Speaker 3: there is no other way to be able to treat
15:04
Speaker 3: someone that is so rare. And it's just, you have
15:10
Speaker 3: to have someone that's willing to do that extra work.
15:14
Speaker 3: And fortunately right now, my GI, at times I think
15:19
Speaker 3: it's because she's just so, just in awe and just baffled.
15:25
Speaker 2: As to like what steps to take next.
15:28
Speaker 3: But then I do struggle with There are still a
15:32
Speaker 3: lot of barriers that come with having such a rare
15:37
Speaker 3: and unknown condition. And that's been probably the hardest part. Plus,
15:46
Speaker 3: my husband is an Army veteran. And so we're actually
15:50
Speaker 3: in the VA system. And that just produces its own
15:54
Speaker 3: struggles as well. So I've actually done a lot.
15:57
Speaker 2: Of educating myself. instead of being just a patient. I
16:02
Speaker 2: do a lot and I advocate for that too.
16:04
Speaker 3: I think anyone in our shoes has to be able
16:07
Speaker 3: to or have someone with them and along the ride
16:11
Speaker 3: to be able to help them advocate because there have
16:14
Speaker 3: been times when I cannot talk because I'm in either
16:17
Speaker 3: so much pain or I'm just not really conscious anymore.
16:22
Speaker 3: I'm so tired or whatever it is. So it's just Yeah,
16:27
Speaker 3: it takes a lot of energy and work on everyone's part,
16:31
Speaker 3: not just my part, but my husband's part and the
16:35
Speaker 3: doctor's part.
16:37
Speaker 2: Everyone puts forth a lot of effort.
16:40
Speaker 1: Yeah, it is still one of those things that I
16:44
Speaker 1: think is unfortunate in a way that you still have
16:49
Speaker 1: to advocate a lot. And I think that comes across
16:53
Speaker 1: with a lot of people who have Hirschsprung's. They still,
16:56
Speaker 1: I mean, a lot of GPs that I've come across
17:00
Speaker 1: in my life, you know, you will mention the word
17:03
Speaker 1: Hirschsprungs and they just look at you blankly.
17:05
Speaker 2: And you think, oh, right, okay, here we go again.
17:10
Speaker 1: So it is, like you say, you do have to
17:13
Speaker 1: do a lot of advocating and you do have to
17:15
Speaker 1: do a lot of your own research. And, you know,
17:18
Speaker 1: especially if you have, not that there really is research,
17:23
Speaker 1: a type of straightforward hairsprongs. I don't really think there's
17:27
Speaker 1: a type of straightforward hairsprongs, but even if you do
17:30
Speaker 1: have more complicated ones than others, I think if you
17:33
Speaker 1: do have a more complicated one, obviously the more research
17:35
Speaker 1: you have to do, the more application you have to do.
17:38
Speaker 1: So yeah, I totally understand where you're coming from when
17:40
Speaker 1: you say that's also mentally draining as well.
17:44
Speaker 3: It is, because I think the other important thing is to,
17:48
Speaker 3: when I speak of research, I'm not speaking to like,
17:52
Speaker 3: WebMD or basic knowledge. You have to go into medical
17:59
Speaker 3: journals and try to navigate the terminology that comes into
18:06
Speaker 3: the scientific journals because that's the only way we're going
18:10
Speaker 3: to get actual information that is viable to helping with
18:16
Speaker 3: you getting actual treatments that work and that help. And
18:20
Speaker 3: being able to speak that language too can also help
18:25
Speaker 3: in getting, getting the care that you need, because if
18:30
Speaker 3: you just say, Hey, I need this medication and you
18:33
Speaker 3: can't speak to the wise or the, what it does,
18:37
Speaker 3: you're going to get more, you're not going to get
18:43
Speaker 3: as much support. It's going to be a much harder battle.
18:46
Speaker 3: So yeah, it, And it's draining because that work never ends.
18:54
Speaker 2: No.
18:55
Speaker 1: No, it is. But I guess on the flip side
18:58
Speaker 1: of that, when you do find someone, like you talked
19:01
Speaker 1: about your first surgeon, you do find someone who does advocate,
19:07
Speaker 1: who does listen, which I think is also really important.
19:12
Speaker 1: When you find someone, when you find that support, I mean,
19:15
Speaker 1: that's got to be a huge relief as well.
19:19
Speaker 3: It is. I mean, and usually when you have that too,
19:23
Speaker 3: you're able to make more progress. Or like I said,
19:26
Speaker 3: like in childhood too, a lot of it was management.
19:30
Speaker 3: And a lot of it now is management too, which
19:32
Speaker 3: is also difficult for some practitioners to truly understand.
19:36
Speaker 2: Because we have this culture of looking for.
19:38
Speaker 3: A cure and looking for an answer. And when it
19:43
Speaker 3: comes to the gut and understanding that brain health body connection,
19:48
Speaker 3: the gut affects everything. It's so intertwined with all of
19:56
Speaker 3: our systems that if something's not working, and for everyone,
20:02
Speaker 3: it's unique because like with your hairsprongs, you're not going
20:07
Speaker 3: to have the same areas necessarily affected. So where you
20:11
Speaker 3: may have some parts removed, I may have different parts
20:14
Speaker 3: removed or, you know, it's just, and like you said
20:19
Speaker 3: with mine, it's like the 1%. There's not many others
20:23
Speaker 3: that are missing that much of the gut.
20:25
Speaker 2: And so, It's also one thing I've been advocating is
20:29
Speaker 2: we need.
20:30
Speaker 3: A good map of what and where do different nutrients
20:36
Speaker 3: and things get absorbed to the best degree. And so
20:41
Speaker 3: like with me, one of the biggest battles I've.
20:45
Speaker 2: Had, because with the colon, that's where you hydrate. That's
20:48
Speaker 2: where you absorb water and retain water.
20:51
Speaker 3: So if you don't have that, you're going to be
20:53
Speaker 3: fighting that battle forever.
20:55
Speaker 2: For your life. Like that's just something that comes with
21:00
Speaker 2: not having it.
21:01
Speaker 3: So I now, one of the best tools I have
21:05
Speaker 3: is actually carrying around a salt shaker. And it doesn't
21:08
Speaker 3: have just table salt in it because as many of
21:11
Speaker 3: you are probably aware, table salt doesn't have the benefits.
21:16
Speaker 2: That like sea salt or salt that has magnesium with
21:20
Speaker 2: it and everything.
21:21
Speaker 3: And that's going to be much more beneficial to rehydrating
21:24
Speaker 3: you or helping you stay hydrated than just any day salt.
21:31
Speaker 3: And so that's been one of my biggest tools or
21:35
Speaker 3: carrying around like consomme broth and just in powder form
21:39
Speaker 3: and everything.
21:40
Speaker 2: So even during my hospital visits, I'll make my own.
21:43
Speaker 3: Broth like it's tea and carry that around because it's
21:48
Speaker 3: so much more beneficial than just drinking water or just
21:54
Speaker 3: drinking like any other like coffee tea especially because they're
21:57
Speaker 3: diuretics and just so you learn these little tools that
22:01
Speaker 3: help and you try to make the best of it
22:04
Speaker 3: and that's just that's how we have to move forward
22:07
Speaker 3: and just share.
22:08
Speaker 1: Our stories for sure for sure and i guess that
22:12
Speaker 1: also comes with experience as well of having having her
22:17
Speaker 1: sprungs and that's also the unfortunate thing with her sprungs
22:21
Speaker 1: as well as it is a lot of trial and
22:22
Speaker 1: error or in a lot or in many cases and
22:26
Speaker 1: a lot of people go right well you know whether
22:28
Speaker 1: it be medication whether it be diet whether it be
22:33
Speaker 1: something else activities whatever and you go right okay well
22:37
Speaker 1: this works for me this doesn't work for me but
22:40
Speaker 1: then there's the other complicated issue which is then you
22:42
Speaker 1: have some things that work for you on some days
22:44
Speaker 1: and something that you try the same thing on another
22:48
Speaker 1: day and it doesn't work for you and you think
22:49
Speaker 1: well how does that work and it is it's it
22:53
Speaker 1: can be, it can be a frustrating thing because it
22:56
Speaker 1: is a lot of trial and error and it is,
22:59
Speaker 1: and I guess you've experienced that as well, I take it.
23:03
Speaker 2: Yeah.
23:04
Speaker 3: And trying to explain to people like when your quote
23:08
Speaker 3: unquote safe foods work or don't work is not an easy.
23:12
Speaker 2: Feat because people don't understand that.
23:16
Speaker 3: And also to explain like, I'm sorry, I can't eat
23:20
Speaker 3: what you're serving at this party can also be a
23:24
Speaker 3: difficult conversation. But, you know, it's something you get used to.
23:29
Speaker 3: And so I've gotten in the habit of before family
23:32
Speaker 3: parties or whatever, wherever I'm going, I'll ask, OK, well,
23:37
Speaker 3: what are if it's not a restaurant?
23:38
Speaker 2: Because then you can look up the menu. OK, like,
23:40
Speaker 2: will there be food? And if so, what food will
23:43
Speaker 2: be there?
23:44
Speaker 3: And I try to explain it in a way it's
23:45
Speaker 3: like I'm not trying to be mean or ask you
23:49
Speaker 3: to change the menu I'm asking so I can plan
23:53
Speaker 3: for myself like one do I need to eat before
23:56
Speaker 3: do I need to prep my TPN or do I
23:59
Speaker 3: need to bring a like depending on how long I'm
24:01
Speaker 3: there do I need to bring a snack you know
24:04
Speaker 3: one thing I've learned especially in the last couple years
24:07
Speaker 3: has been unfortunately with especially the complications I've had going
24:14
Speaker 3: anywhere requires so much more planning than.
24:18
Speaker 2: Anything So it's like, okay, well, how many bathrooms are
24:21
Speaker 2: there going to be? Will there be, you know, where
24:24
Speaker 2: will they be?
24:25
Speaker 3: And just even things like that, that require extra planning
24:30
Speaker 3: and extra time. I mean, I've actually been nervous to
24:34
Speaker 3: fly since my ileostomy surgery because I haven't flown since.
24:39
Speaker 3: And I used to fly all the time. I went
24:41
Speaker 3: to college in Hawaii, so it was the only way.
24:44
Speaker 2: To get there. Well, not the only way. There's still boats.
24:49
Speaker 1: You can swim. It might take a while, yeah. But
24:55
Speaker 1: you're right, yeah. I mean, that is the thing. But
24:58
Speaker 1: I guess we're not necessarily alone with that with Hirschsprung.
25:02
Speaker 1: I mean, there are obviously so many conditions, not just
25:05
Speaker 1: stomach conditions, but plenty of people, whether they have dairy
25:11
Speaker 1: allergies or peanut allergies or whatever, and wanting to know.
25:14
Speaker 1: I think that's something. that happens quite a lot. You're
25:21
Speaker 1: absolutely right as well.
25:23
Speaker 3: And with allergies becoming more common when we were younger,
25:26
Speaker 3: I think that's also helped open the door to having
25:30
Speaker 3: some of those dietary conversations.
25:33
Speaker 2: It's just....
25:35
Speaker 3: Trying to explain like, no, this isn't necessarily an allergy.
25:39
Speaker 3: It goes beyond that. And, and so trying to explain
25:42
Speaker 3: that can also be, and that's where I've been, you know,
25:45
Speaker 3: it's no need to worry. Like I've got it covered.
25:48
Speaker 3: I just need to know what's going to be there.
25:50
Speaker 3: So it's more trying to open the door and be
25:54
Speaker 3: as open as possible or as your, the person is
25:58
Speaker 3: willing to be, because I want to work with them.
26:00
Speaker 3: I don't want them to ever feel like I'm invading
26:03
Speaker 3: their space or, trying to make them uncomfortable or anything
26:07
Speaker 3: like that I'm just trying to make it so that
26:09
Speaker 3: when I'm there I'm not an inconvenience and I'm still
26:14
Speaker 3: trying to enjoy my time well in the presence of
26:17
Speaker 3: others so that that has helped a lot but yeah
26:23
Speaker 3: definitely those conditions are out there yeah it's like you.
26:26
Speaker 1: Say communication communication is that really important point There was
26:32
Speaker 1: another point that you made as well, and I do
26:35
Speaker 1: come across it quite a bit with people who are,
26:40
Speaker 1: through no fault of their own, unaware of Hirschsprungs. Because
26:45
Speaker 1: you can't be across every condition, especially conditions that are
26:49
Speaker 1: really rare, and people who say, well, you've had surgery now,
26:54
Speaker 1: so you're fixed.
26:54
Speaker 2: Aren't you?
26:55
Speaker 1: Or you talked about it being a management condition.
26:59
Speaker 2: It's always.
27:02
Speaker 1: Whether you don't have many symptoms or difficulties or whether
27:08
Speaker 1: you have a lot, it's still going to be, no
27:11
Speaker 1: matter what you have, it's still going to be a
27:13
Speaker 1: management condition. And I think that's something that I think
27:18
Speaker 1: can be, especially when people know that you've had surgery
27:21
Speaker 1: or surgeries in many cases, they just expect you to
27:26
Speaker 1: be fixed. And they go, well, everything's all right now,
27:29
Speaker 1: isn't it? It's like, well... yes and no. It's kind
27:33
Speaker 1: of like the diet thing again. You know, sometimes days
27:36
Speaker 1: will be fine, sometimes days won't. And I guess that
27:39
Speaker 1: can be quite a tricky thing to explain to people
27:42
Speaker 1: sometimes when you talk about it being a managed condition
27:46
Speaker 1: rather than a fixed condition, if that makes sense.
27:51
Speaker 2: It does. Well, okay.
27:52
Speaker 3: Coming from our shoes, it makes sense. Trying to explain
27:57
Speaker 3: it in simple terminology can be An interesting battle. But
28:04
Speaker 3: I will say one of the other times I was
28:06
Speaker 3: able to make some clarity with a friend was it
28:11
Speaker 3: was shortly after one of my surgeries and it was
28:14
Speaker 3: the first time my meds had truly helped take away
28:18
Speaker 3: a lot of the pain to the point where I
28:21
Speaker 3: was more in her shoes rather than her trying to
28:25
Speaker 3: understand my shoes.
28:26
Speaker 2: And so we were working and.
28:30
Speaker 3: I just looked at her and I went, Oh my gosh,
28:32
Speaker 3: this is how you can get so much done in
28:35
Speaker 3: a day.
28:37
Speaker 2: Because I just wasn't having flare ups.
28:40
Speaker 3: I was pretty much pain free, which was a first
28:43
Speaker 3: I've to have a day that is truly pain free
28:47
Speaker 3: is very rare.
28:48
Speaker 2: And so I literally just looked at her just deer.
28:53
Speaker 3: And headlights look like a light bulb had just gone off.
28:57
Speaker 3: And I'm just like, since I've been at work, I've been.
29:01
Speaker 2: Able to do A, B, C, all the way to Z.
29:04
Speaker 3: And not only that, but I still have energy. I'm
29:09
Speaker 3: still getting stuff done and I haven't had to take
29:13
Speaker 3: the same amount of breaks or had to take a
29:16
Speaker 3: step back and be like, okay, I need to slow.
29:18
Speaker 2: Down and all that. I had never experienced that before.
29:24
Speaker 2: So that was, I was like, okay. But it also
29:27
Speaker 2: helped me understand that that's also why.
29:32
Speaker 3: Pacing is so important and trying to navigate energy levels
29:39
Speaker 3: and truly trying to understand how much I have for
29:42
Speaker 3: that day and trying to also work with it and
29:46
Speaker 3: shift should that change after doing an activity or even not.
29:51
Speaker 3: But That was an eye-opening experience for me because sometimes
29:57
Speaker 3: we just don't have those examples to go by.
29:59
Speaker 2: So that was super helpful, not only for her, but
30:03
Speaker 2: for me.
30:04
Speaker 1: Yeah, definitely. Because it's, again, sort of recognizing that in others,
30:10
Speaker 1: I guess, as well, isn't it?
30:12
Speaker 2: Mm-hmm. Yeah.
30:15
Speaker 1: Yeah. And I, again, Hirschsprung's being one of those that
30:18
Speaker 1: just affects people completely differently. There will be plenty of
30:22
Speaker 1: people who, we'll almost have to build up a large
30:28
Speaker 1: pain tolerance because if you stopped at the slightest bit
30:34
Speaker 1: of pain at every turn, you'd never do anything. So
30:39
Speaker 1: we do have to build up that tolerance.
30:42
Speaker 2: Well, and I don't know if.
30:43
Speaker 3: It's actually tolerance versus it's it kind of goes back
30:48
Speaker 3: to the managing it's okay with this amount of pain
30:52
Speaker 3: I can do a b or c but if I
30:56
Speaker 3: become like if I have more pain later okay I
31:02
Speaker 3: have to cut out this but I can still do
31:04
Speaker 3: this or this or maybe I have to change this
31:07
Speaker 3: project a bit to be more realistic but it's more
31:12
Speaker 3: being able to gauge our pain and understand okay but
31:19
Speaker 3: where is this coming from is this something I can
31:21
Speaker 3: work with is this something that needs treated like how
31:25
Speaker 3: do I move forward and so it's a constant I
31:31
Speaker 3: think reflective piece and that that's all part of management
31:35
Speaker 3: I mean yeah.
31:37
Speaker 1: Yeah definitely definitely yeah I think I'd go along with
31:41
Speaker 1: that as well I think it's a little bit of
31:43
Speaker 1: both whether we you know It's trying to find things
31:47
Speaker 1: that we can do. And I know we sort of
31:50
Speaker 1: come from the same outlook in that. It's more, you know, yes,
31:54
Speaker 1: we have this condition, albeit in very different forms. But
31:58
Speaker 1: we think, OK, what can we do rather than can't?
32:03
Speaker 1: And I think that that's that's such an important mindset
32:07
Speaker 1: to to to get into as well, because it would
32:10
Speaker 1: be very, very easy. And there are days most definitely
32:13
Speaker 1: where we can't do things. And that's just the way
32:17
Speaker 1: it is. That's not us being weak or feeble or
32:22
Speaker 1: making excuses. There's just days where we just cannot do
32:25
Speaker 1: the things that we want to do. And that's unfortunate.
32:28
Speaker 1: But there's also the days where we do as much
32:34
Speaker 1: as you can.
32:34
Speaker 2: Absolutely.
32:35
Speaker 1: And there are days where we are really good that
32:37
Speaker 1: we can do, you know, everything that we want to do.
32:40
Speaker 3: Yeah.
32:41
Speaker 2: Well, and I think that honesty.
32:43
Speaker 3: Like we have to be honest with ourselves because I
32:46
Speaker 3: think the other end to that or other side of
32:49
Speaker 3: that is it's okay to have the mentally tough days
32:54
Speaker 3: as well.
32:55
Speaker 2: They're not going to be easy.
32:57
Speaker 3: But like the other day, I definitely had one of
33:01
Speaker 3: those days where I just needed to allow myself to
33:04
Speaker 3: have that good cry, allow myself to go to that
33:07
Speaker 3: space so that I could you know, not ignore it.
33:12
Speaker 3: Cause when we ignore things, that's when they become bigger
33:15
Speaker 3: and more difficult to deal with. And so being honest
33:18
Speaker 3: with ourselves, not only with where we're at physically, but
33:22
Speaker 3: where we're at mentally is also very, very important.
33:25
Speaker 2: And that was probably one of the harder things for
33:29
Speaker 2: me to learn.
33:30
Speaker 3: Like it wasn't until I went to college that I
33:34
Speaker 3: ever wore a bikini. I was, I never wanted to
33:38
Speaker 3: show any of my scars. So like, In high school
33:41
Speaker 3: and all that, they were the tan kinnies, like the
33:44
Speaker 3: crop top.
33:45
Speaker 2: Sort of bikinis. But all of them hid my scars.
33:49
Speaker 2: But then when I went to college, I had fun
33:51
Speaker 2: with it.
33:51
Speaker 3: And I was like, well, I have this one that
33:53
Speaker 3: looks kind of like a divot.
33:54
Speaker 2: So I was like, yeah, I was attacked by a shark.
33:57
Speaker 2: You know, no big deal. I made it out. It's cool.
34:01
Speaker 3: But it also makes for fun when you're a college
34:04
Speaker 3: student to have fun telling and coming.
34:07
Speaker 2: Up with some very interesting stories at the bar. That's brilliant.
34:14
Speaker 1: No, I love hearing that. I love hearing that, because
34:17
Speaker 1: that could be, you know, especially with some... Because with Hirschsprungs,
34:22
Speaker 1: the scars, I think, from people I've spoken to who
34:26
Speaker 1: have young children, sometimes the scars are getting smaller than
34:31
Speaker 1: maybe the scars that we had when we had our surgery.
34:36
Speaker 1: I imagine you'd probably like these. They've got fairly big, large...
34:40
Speaker 1: scars especially through the pull through and whatnot um but
34:43
Speaker 1: i think they are they are getting smaller i know
34:46
Speaker 1: there's a lot of keyhole surgery that's being done um
34:49
Speaker 1: which is amazing cool yeah yeah i mean that that's
34:53
Speaker 1: amazing that the keyhole surgery is being done you know
34:56
Speaker 1: for such complicated operations um but yeah no i i
35:01
Speaker 1: love that because it can be it can be quite
35:04
Speaker 1: a difficult one sort of socially so i love i
35:08
Speaker 1: love hearing the fact that You can have fun with
35:10
Speaker 1: it too.
35:12
Speaker 3: Oh yeah.
35:13
Speaker 2: And of course, you know, I was younger.
35:15
Speaker 3: So at the time I would completely lift my shirt
35:19
Speaker 3: up just a little bit, show that nice star and
35:21
Speaker 3: be like, did you get attacked by a shark?
35:24
Speaker 2: I don't think so.
35:26
Speaker 3: So, and I lived in Hawaii, so you had tourists
35:28
Speaker 3: too that were afraid of sharks. So of course, you know,
35:31
Speaker 3: definitely helped with that.
35:32
Speaker 2: Oh yeah, you can play back cards. Or be careful
35:37
Speaker 2: who you try to pick a fight with, you know.
35:40
Speaker 3: You might get shot with an arrow, you know, like
35:42
Speaker 3: little stupid, silly stories.
35:46
Speaker 2: And just, yeah.
35:48
Speaker 3: But I also made friends with just about every type
35:53
Speaker 3: of group you could. Like I made friends with the fraternity,
35:57
Speaker 3: the sorority. I made friends with the local.
35:59
Speaker 2: Samoan, you know, just in the Hawaiian. Like I had
36:03
Speaker 2: friends everywhere.
36:04
Speaker 3: And so it was just, they also had fun helping
36:09
Speaker 3: me come up with stories. So it was just, and
36:12
Speaker 3: it's how I met my husband. So, you know, I
36:14
Speaker 3: met my husband out there. So we didn't get married
36:17
Speaker 3: until 14 years later, but, you know.
36:20
Speaker 1: Took him a while to ask, didn't it?
36:25
Speaker 2: Not necessarily. It just took him a while to ask sober.
36:29
Speaker 3: And I wasn't going to date someone who was asking me.
36:34
Speaker 2: Out, you know, well, not sober. Fantastic.
36:39
Speaker 1: And also, you said this right at the very beginning,
36:44
Speaker 1: but you also do some work in radio as well.
36:48
Speaker 3: I do.
36:48
Speaker 1: Can you tell us a little bit about that?
36:51
Speaker 2: Sure, yeah.
36:52
Speaker 3: So my husband and I actually started a radio show
36:55
Speaker 3: out here in the Chicagoland area called Behind the Scenes.
36:59
Speaker 3: And the.
37:01
Speaker 2: Point of it is just to continue that.
37:03
Speaker 3: Advocacy work, not just for like myself with Hirschsprung's and
37:07
Speaker 3: chronic illness and like the ileostomy and all that fun stuff.
37:12
Speaker 3: But like with him being a veteran, we also try
37:14
Speaker 3: to mix in military stories from his experience as well
37:19
Speaker 3: as the VA system in navigating health care.
37:22
Speaker 2: Because those are things too that there's Like, Hirschsprung, as
37:28
Speaker 2: we've talked about, is a rare condition.
37:30
Speaker 3: There's not a whole lot of people that understand it
37:33
Speaker 3: or know much about it or that will. So we
37:36
Speaker 3: also try to incorporate information and stories that will touch
37:43
Speaker 3: more people in the audience. So we also include, like,
37:46
Speaker 3: parenting stories and all that, which, as we know, everyone's.
37:51
Speaker 2: Got a mom or dad or guardian in some shape
37:54
Speaker 2: or form, so... you know, it's something we can all
37:57
Speaker 2: relate to.
37:58
Speaker 3: And so we actually end every show with a tip
38:02
Speaker 3: for our son as he's trying to navigate entering the
38:06
Speaker 3: adult world because he's a 19 year old.
38:09
Speaker 2: So just learning, you know, how to enter the, like
38:12
Speaker 2: about entering.
38:12
Speaker 3: The workforce, what that's like, like HR, but also friendships
38:18
Speaker 3: and a whole slew of things. So we try to
38:22
Speaker 3: incorporate a little bit of everything, but We do a
38:25
Speaker 3: lot of advocacy work with that too.
38:28
Speaker 1: That's brilliant.
38:29
Speaker 2: That's brilliant.
38:30
Speaker 1: Obviously, you've got a ton of experience in both the
38:38
Speaker 1: advocacy and medical world as such, having obviously spent quite
38:44
Speaker 1: a bit of time in hospitals and whatnot. But yeah.
38:49
Speaker 3: So that's not only that, but I actually got a
38:52
Speaker 3: master's in child life. So I intended to go into
38:56
Speaker 3: the health care sphere or realm or however you want
39:00
Speaker 3: to talk about it. And just unfortunately, that's when all
39:06
Speaker 3: the complications that I've had really started to spiral. And
39:10
Speaker 3: so unfortunately, I can't really utilize my degree to the
39:14
Speaker 3: extent that I wanted or in the way that I
39:16
Speaker 3: wanted to. I'm now trying to find other avenues of
39:20
Speaker 3: doing that. So it's been an interesting road. But I
39:24
Speaker 3: and I also used to be a teacher.
39:26
Speaker 2: I was a teacher and pre-K director.
39:28
Speaker 3: So I took care of a hundred preschool kids from
39:32
Speaker 3: the age of six weeks all the way.
39:35
Speaker 2: I mean, including summer camp, I did up until, you know,
39:39
Speaker 2: high school. So I have a lot.
39:42
Speaker 3: Of experience in just youth development and all that too.
39:45
Speaker 3: So combining to and then just my own experience in
39:50
Speaker 3: the adult world. One of the other things I like
39:52
Speaker 3: to advocate for is understanding that transition of going from
39:57
Speaker 3: children's hospitals.
39:59
Speaker 2: To adult care, which look vastly different.
40:04
Speaker 3: And the way that you approach and the way that
40:06
Speaker 3: you advocate for yourself is going to look very different.
40:10
Speaker 3: So that's also something that I try to touch on
40:13
Speaker 3: because teenagers this day these days do not understand how
40:18
Speaker 3: to do that and it it's a tough road I
40:23
Speaker 3: mean I still have issues so I can only imagine
40:26
Speaker 3: people that don't know what they're getting into you know.
40:30
Speaker 1: Experience yeah definitely I think that's one of the biggest
40:34
Speaker 1: things in health care across the world is that transition
40:38
Speaker 1: it's that at that very um important age sort of
40:42
Speaker 1: around 15 16 when you when you transition or even
40:46
Speaker 1: eight when you transition into um transition to adult care
40:52
Speaker 1: um because it can look it can look very different
40:55
Speaker 1: and obviously the communication between um the children's wards children's
41:03
Speaker 1: hospitals that may know you very very well then transitioning
41:08
Speaker 1: that into adult care which they may not know you
41:11
Speaker 1: as well you know that communication I think is is
41:15
Speaker 1: still still a lot of work to be done there
41:20
Speaker 1: but I think not only.
41:23
Speaker 3: That but there's also the barrier of the experience itself
41:27
Speaker 3: being very different in children's hospitals we do tend to
41:31
Speaker 3: have this better idea and better practice of whole health
41:35
Speaker 3: care versus adult care where all of a sudden in
41:41
Speaker 3: the children's hospital, you had access to art, you had
41:44
Speaker 3: access to pet therapy, you know, video games, depending where
41:49
Speaker 3: you're at, all these other things to help occupy and
41:52
Speaker 3: distract and take care of your mental health and all that.
41:57
Speaker 3: Whereas as soon as you transition into adult care, it's like, okay,
42:00
Speaker 3: are you seeing a psychiatry or are you know, like
42:04
Speaker 3: how are you dealing with the mental barriers of being
42:08
Speaker 3: in this situation? So one of the other things like
42:12
Speaker 3: I always do, I have a suitcase that I bring
42:15
Speaker 3: with me to the hospital because not only does it
42:18
Speaker 3: include like the clothing and the hygiene care, but it
42:21
Speaker 3: also includes at least a couple activities.
42:24
Speaker 2: For me to do.
42:25
Speaker 3: And usually my computer, because let's face it, you know,
42:30
Speaker 3: technology just, is how we deal with a lot of things.
42:33
Speaker 2: So whether it's.
42:35
Speaker 3: Movies or TV and, you know, not having to look
42:38
Speaker 3: at this mini phone to be able to watch a
42:40
Speaker 3: show or movie and all that, that you actually want
42:44
Speaker 3: to watch. You're not dependent on whatever's on the basic
42:48
Speaker 3: channels for some, you know, lively entertainment.
42:54
Speaker 2: And that's where I bring coloring books. I bring art materials.
42:59
Speaker 2: I've had to.
43:00
Speaker 3: change my scissors that I include in that little activity
43:06
Speaker 3: set but depending on which hospital you go to they
43:10
Speaker 3: will not always let you bring the scissors in so
43:15
Speaker 3: yeah but I do try to advocate for you know,
43:18
Speaker 3: having things like that as well because adult care is
43:22
Speaker 3: vastly different.
43:23
Speaker 2: And if you're more aware of it and ready to deal.
43:28
Speaker 3: With that, it's going to be a lot easier versus
43:30
Speaker 3: showing up and going, oh, I have to stare at
43:33
Speaker 3: this wall for.
43:34
Speaker 2: Three days or however long you're there.
43:36
Speaker 3: That is not the same type of care as having
43:40
Speaker 3: different things to do or items brought to your room,
43:43
Speaker 3: even if it's just a book. So.
43:46
Speaker 2: definitely definitely a different.
43:48
Speaker 1: Experience that's a good tip it's a really good tip
43:52
Speaker 1: because I think when when some people go in they
43:54
Speaker 1: just they just think well I'm just I'll pack you
43:56
Speaker 1: know essentials and overnight stuff actually forget that there is
44:01
Speaker 1: going to be downtime especially you know if you're waiting
44:04
Speaker 1: for surgery or surgery delayed or whatever it may be
44:07
Speaker 1: there is going to be that downtime and having something
44:09
Speaker 1: just to just to occupy your mind rather than thinking
44:13
Speaker 1: about what procedure is to come can be really beneficial.
44:19
Speaker 3: Oh, yeah. And having snacks that you actually like and
44:22
Speaker 3: not depending on hospital food is always great.
44:26
Speaker 1: Yeah, most definitely.
44:28
Speaker 2: Or tea.
44:28
Speaker 3: If you don't like basic black or green tea, you
44:32
Speaker 3: better bring your teas too.
44:34
Speaker 2: Things like that, because you're not going to have access
44:36
Speaker 2: to that.
44:36
Speaker 3: So, yeah.
44:38
Speaker 2: Hospital food is not always the best.
44:41
Speaker 3: And you don't, like, like, I don't know about for you,
44:45
Speaker 3: but like I can't eat large meals.
44:47
Speaker 2: I eat like small meals throughout the day and that's
44:50
Speaker 2: my meal.
44:52
Speaker 3: And so having little items that I can kind of
44:56
Speaker 3: snack on that are also safe foods for me just
44:58
Speaker 3: makes that so much easier than depending on, okay, what
45:02
Speaker 3: can I order in advance that I can maybe stash
45:05
Speaker 3: aside for later? Yeah.
45:08
Speaker 1: Yeah, definitely. Definitely. No, that's, that's brilliant. um and then
45:12
Speaker 1: i guess just just finally as we come towards the
45:15
Speaker 1: end um so for the future for you um and
45:21
Speaker 1: it's been quite a roller coaster ride of ups and
45:24
Speaker 1: downs we've gone through a lot of it um but
45:27
Speaker 1: obviously you're doing the show now which seems to be
45:30
Speaker 1: going really really well um what do you kind of
45:33
Speaker 1: see in the future.
45:35
Speaker 2: That's been the real question.
45:37
Speaker 3: I am trying to figure that out now because with
45:42
Speaker 3: the management thing, how I manage today looks very different
45:47
Speaker 3: than how I was managing 10 years ago.
45:50
Speaker 2: So like 10 years.
45:51
Speaker 3: Ago, I was chasing two and three year olds, you know,
45:56
Speaker 3: teaching kids how to potty and, you know, basic ABCs.
46:00
Speaker 2: And really trying to amp up story time.
46:04
Speaker 3: And making that very vibrant and actually having a few
46:08
Speaker 3: parents sit down to listen in because I would get
46:12
Speaker 3: that animated during story time.
46:14
Speaker 2: So just trying to find other things.
46:17
Speaker 3: And that's why the radio show is something that keeps
46:19
Speaker 3: me motivated and keeps me at least not so isolated
46:26
Speaker 3: because that's also a very difficult thing for me because
46:30
Speaker 3: I can be somewhat out.
46:32
Speaker 2: I'm not I'm not a complete introvert. by any means.
46:35
Speaker 2: So it at least gives me an outlet.
46:38
Speaker 3: And then I have stepped into more and more advocating roles.
46:44
Speaker 3: And more recently, I have about seven individuals interested and
46:50
Speaker 3: that have committed to helping with a book that will
46:53
Speaker 3: be hopefully published next year, And it's going to just
46:58
Speaker 3: be a collection of short stories, poems, or whatever we
47:02
Speaker 3: come up with. We have about eight months to figure
47:05
Speaker 3: that out and compile all those pieces and get it
47:09
Speaker 3: published into a book that we can hopefully produce and
47:12
Speaker 3: present at a couple, hopefully, conferences next year.
47:16
Speaker 2: So very tight timeline.
47:19
Speaker 3: But It was an idea I had at about 10
47:22
Speaker 3: o'clock at night that I just started outlining throughout the
47:26
Speaker 3: night because of course it was one of those insomnia
47:30
Speaker 3: ridden nights where sleep was just not my friend. And
47:34
Speaker 3: by the morning I had four people committed and a
47:37
Speaker 3: possible sponsor.
47:38
Speaker 2: So if you know anyone that wants to sponsor a.
47:41
Speaker 3: Book by people that deal with intestinal failure or digestive
47:45
Speaker 3: issues and all of that, let the, you know, tell
47:48
Speaker 3: them to reach out to me and We'll have them
47:50
Speaker 3: included in this little book that we're doing.
47:53
Speaker 2: So yeah, that, I mean, it's little things like that.
47:56
Speaker 3: Just finding some projects here and there to keep me
48:00
Speaker 3: mentally moving. And that's so stagnant and isolated because those
48:05
Speaker 3: are some of the hardest things.
48:06
Speaker 2: To deal with.
48:08
Speaker 1: Yeah, definitely. Well, I wish you all the success in
48:11
Speaker 1: the world with all of your projects because they sound brilliant.
48:14
Speaker 1: They sound really interesting. So we'll definitely... definitely keep an
48:18
Speaker 1: eye on it and thank you so much for coming
48:20
Speaker 1: on this has been an interview that I've wanted to
48:24
Speaker 1: get done for quite a while to chat to you
48:26
Speaker 1: because I knew it was going to be an interesting
48:28
Speaker 1: story it hasn't disappointed in the slightest so no thank
48:32
Speaker 1: you so so much for coming on and I yeah
48:34
Speaker 1: as I said wish you all the success with everything
48:37
Speaker 1: in the future.
48:37
Speaker 3: Well thank you and thank you for having me I
48:41
Speaker 3: look forward to our continued conversations too because I know
48:43
Speaker 3: we always have some interesting conversations.
48:50
Speaker 2: See you next week. Thank you.