Get ready for an emotionally charged and uplifting episode of the Too Posh Podcast as we continue our journey with the incredible Selwa Mitchell. In this episode, Selwa shares the heartwarming story of a pregnant mother fighting to keep her baby girl, who has Cystic Fibrosis, healthy even before birth. With the groundbreaking drug Trikafta, this mother is defying the odds, showing just how close we are to a cure for CF.
Selwa reflects on the transformative power of Trikafta, a drug that came too late for her but is miraculously healing the lungs of other CF patients. She dreams of the day she can return to the Bahamas, where the saltwater has always been her sanctuary.
This episode dives deep into Selwa’s journey: the bittersweet memories of missed opportunities with Trikafta, the claustrophobic struggle of breathing with only 32% lung function, and the excruciating pain post-transplant. Yet, through it all, Selwa’s spirit remains unbroken, bolstered by her faith, her family, and her beloved brother who is her rock.
Selwa and her husband Scott share poignant moments and invaluable advice for anyone battling illness or supporting a loved one. Scott’s steadfast love and unwavering support shine through, proving that a solid support system can make all the difference.
Selwa’s words of wisdom resonate powerfully: cherish every breath, stay present, and never take life for granted. Whether you’re stuck in traffic or facing life’s toughest challenges, remember to breathe deeply and appreciate the gift of life.
Join us for a heartfelt episode filled with inspiration, love, and the relentless pursuit of health and happiness. Selwa’s story is not just about surviving Cystic Fibrosis; it is a testament to the human spirit’s resilience, the power of family, and the miracles that love and faith can achieve.
Follow Selwa's journey and be inspired:
Facebook: Selwastrong
Instagram: Selwayoga
🌟🫁 #TooPoshPodcast #SelwaStrong #CysticFibrosis #Trikafta #OrganDonation #LoveAndResilience #Inspiration #NeverGiveUp
Selwa reflects on the transformative power of Trikafta, a drug that came too late for her but is miraculously healing the lungs of other CF patients. She dreams of the day she can return to the Bahamas, where the saltwater has always been her sanctuary.
This episode dives deep into Selwa’s journey: the bittersweet memories of missed opportunities with Trikafta, the claustrophobic struggle of breathing with only 32% lung function, and the excruciating pain post-transplant. Yet, through it all, Selwa’s spirit remains unbroken, bolstered by her faith, her family, and her beloved brother who is her rock.
Selwa and her husband Scott share poignant moments and invaluable advice for anyone battling illness or supporting a loved one. Scott’s steadfast love and unwavering support shine through, proving that a solid support system can make all the difference.
Selwa’s words of wisdom resonate powerfully: cherish every breath, stay present, and never take life for granted. Whether you’re stuck in traffic or facing life’s toughest challenges, remember to breathe deeply and appreciate the gift of life.
Join us for a heartfelt episode filled with inspiration, love, and the relentless pursuit of health and happiness. Selwa’s story is not just about surviving Cystic Fibrosis; it is a testament to the human spirit’s resilience, the power of family, and the miracles that love and faith can achieve.
Follow Selwa's journey and be inspired:
Facebook: Selwastrong
Instagram: Selwayoga
🌟🫁 #TooPoshPodcast #SelwaStrong #CysticFibrosis #Trikafta #OrganDonation #LoveAndResilience #Inspiration #NeverGiveUp
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Welcome to the Tupash Podcast. Iam Gabrielle. I'm a former New York
Mafia princess originally from Austria. Iam the mother of three and the owner
of Tupash Boutique and here with mybeautiful co host Masella, my daughter.
Hello, I'm Marcella. I'm adancer, choreographer, model and designer for
(00:22):
Tupash and I say whatever I want. My name is Cruz. I am
a stylist. I also own theSociety Salon in the Design District. And
I am a short, little Mexicanwith the big personality. What will they
say next? Welcome to the TupashPodcast. Was that dangerous or I don't.
(00:51):
I'm sure the doctors got smart andfigured it out because obviously camp was
canceled. But anyway, so,yeah, once we get sick, you
know, with that, that's that'sit. And it's it's really you can't
have a transplant once you have thepatia, yeah and so and a lot
of people are always just like,oh, so, you know, you
had to endure so much with sixtyfibrosis, why don't you just get a
lung transplant? You know, andlike, once you can have one,
(01:14):
and well, my story is exactlywhy, because rejection isn't the full proof
like cure. Really, the truecure is curing six fibrosis, which they
are so close. There's so manydrugs that can do. And there's a
really cool story. I'm actually talkingto a mom that has a daughter or
yeah, I guess she's a daughterthat because she's still in she's still she's
(01:34):
still they figured out that the daughterhas the fetus has six fibrosis, and
so she's figured she's on this journeyto keep her baby healthy. Is even
in the in utero, and she'staking medicine. She's taking the medicine.
The healthy mom is taking Trikafta,which is it's a pill that helps people
(01:55):
control their CF and it helps controlthe DNA, and so then the baby
is doing so well. I don'tknow everything that's going on now. I
need to call and just type orcheck on her. But she's such an
awesome mom, such an advocate.She's like figuring out all ways to keep
her baby healthy. And the baby'snot even here yet, but I think
or maybe she did deliver. Ineed to check. But it's just really
cool what they can do now.So like to the point where the baby
(02:17):
probably won't even have symptoms of CFbecause she's taking this pill during pregnancy and
doing breastfeeding is the plan too.What howcohol is that the whole thing that
Alison was doing trek afta. Probablyit came from the ocean, right,
Okay, so hypersal hypersonic saling.So she's inhaling salt water. And I
(02:38):
will say, I feel really goodwhen I go to the ocean, like
so good to the point where we'regonna go back soon, like that'll be
my that's after my transplant. Wewere going back to the Bahamas. But
yes, salt water when it drawsout any kind of mucus that you have
built up, and that's what she'sprobably inhaling hyper cell, which helped me
(03:00):
a lot. She's probably doing tobramysin as well, which is in inhaled
antibiotic, I'm pretty sure. Andthen she's probably taking tri Kafta, which
I would I would hope, Ihighly recommend, because it's too late for
me because I've already had the transplant, So I mean, I take it
for my sinuses, but my lungsdon't have CF anymore. It's just has
rejection. But if you have cfyou can take tri Kafta and that I've
(03:23):
seen kids lung function actually go upand they heal with tri kafta. So
there's so many things there. DoI think that sounds familiar that that was
a pill that it came out nottoo long ago, right, And yeah,
it was super expensive. I thinkit's kind of the latest, most
groundbreaking drug that they've developed, andso they were it was in testing phase
(03:46):
before her first transplant, and shewas kind of getting close to that transplant
and it's like, can we dothe tri kafta and she was just it
just it was still in testing phase. Yeah, missed. She really just
kind of missed that. Yeah,they have. My dog really wanted me
to hold out as long as Icould, but it was to a point
where no quality of life. Ineeded new lungs. So I missed that
boat. But that's okay because it'sso cool to see all these cffors that
(04:10):
had like fifty percent line function andnow they're having seventy because they are healing
with tri ca afte. Like Isaid, level, Yeah, the celluar
level, which again I don't understandall of it, but it's really It
is cool because again, once yourlungs do scar, they're hard to you
don't usually get them that lung functionback. But Trikafta is like healing their
(04:31):
lungs. It's so wow. Yeah, I mean again, I think to
a point now, I mean it'llbe like, oh you have CF,
Okay, just take a few pills, You're good to go. Like it's
it's going to be I see itin the future. It's going to be
pretty much cured. And that isso cool for and then even just you
know, my children are carriers,and so who knows, like maybe a
(04:53):
CF maybe might pop out down theline, but they'll be fine. So
yeah, baby, is not howmuch contact do you have? Not maybe
physical because of that virus, butwith other cystic fibrosis, I'm not you
know, again, we always kindof had to stay away away, so
we I mean, I'll have Ihave friends on Facebook and now I think
(05:13):
because I've had a transplant, butagain we just we have to be so
careful with germs and but so yeah, I have a friend that she had
her transplant and she's doing really welland had a baby, well had a
baby then had had a transplant.Yeah, oh no, no, no,
no, oh, this is actuallyreally cool. She had her transplant
and then her sister in law Icarried her baby. Does people again?
(05:39):
I just I just being someone thatis always kind of in a situation where
I'm vulnerable and I need help,and there's just so many beautiful people out
there that are so willing to justlift me up or help in some way.
And I just it's such a testamentbecause I know this world is hard
and it's scary, and but Isee so much beauty in this world because
(06:00):
of all the help that I havehad in my journey and how caring people
are. That's so amazing. Oh, Scott, are you ready for this
again? Yes? I can't tell. Yeah ready. I love how common
it he is, like, oh, yeah, it does. It makes
me believe in me because he believesin me. I mean we, I
mean I I I. I ama proponent of hey, let's not get
(06:25):
on the table until you have toget on, like I get the balance.
And so if she can be stableand we can prolong that and she
is okay, of course I wantto do that. But at the same
time, I you know, whenthat time does, we'll be ready.
And I can't wait for her tobe able to take the breath. Yeah,
(06:46):
yeah, because I mean he hasto wake up in the morning and
hear me breathe. And I'm surethat makes you probably claustrophobic as well.
Like some doctors. It's really likesome nurses, like it's hard for them
to even listen to my lungs becauseit's just you know, there's like,
oh, like how because you can'tyou hear the lack of airflow, and
it's just very claustrophobic. But Ifeel like I mentally have a stronghold on
(07:09):
it, and I'm not gonna godown the rabbit hole of like thinking about
my breath too much, just enoughthat it's working for me, because if
you do start thinking about how unsatisfyingyour breath is, it can put you
in a state of like panic.Do you cough? Yeah? I do,
and right now, especially after thevirus, I kind of do.
I had like awesome abs. Imean I kind of. I mean because
(07:30):
I cougheing, like you know,my my muscles are strong because I have
coughed so much, especially when beforelong transplant. Yeah, that's a good
way to get abs. Just ahalf black and laugh laughing is a good
way to get abs. So,yeah, what's the pain, like like
after the transplant, you know,I think they have me drugged up pretty
well that I'm I think what hurtthe worst was my feeding to the second
(07:54):
time around because they had to diginto my abs to make the have a
feeding tube. So I didn't eatfor forty days like I don't because you
have drain, they stick grain tubesinto your I forgot about that. I
think you forget. It's kind oflike childbirth. TI like you just like
I really didn't want to talk aboutthat. But yeah, so and then
(08:15):
I remember there's one doctor I don'tlike, I don't but he would he
would like pull the tube out.And then he's like, hey, I'm
just ditch you up real quick andlike not numb it. You just like
stitch me up. And I justlike that's okay, you know. So
I just I've endured so much,like it's like now a challengeably stitch Let's
see what I can do, youknow, And but like and then other
(08:35):
doctors are like, no, Iwould never do that to you. We're
gonna numb it first. And thenso I mean every surgeon is different,
but I've learned to endure different kindof pain, levels of pain, to
the point where I've learned to mentallyjust look at it as pain and separate
it from your body because You're notpain is just there to protect you from
thinking your body's dying. And I'mjust like I'm not dying. I'm just
getting stitches, you know, likenothing's happening, and you have to just
(08:56):
mentally separate yourself from the pain.And to point where I'm just like,
okay, well, it just kindof come kind of crazy. I think
you're just like, hey, bringit on, Like you know, how
is your brother? Like I lovemy brother. I'll start crying if I
can go. My brother. He'sso awesome because all my life, you
(09:16):
know, he's he's so funny becausehe's always put me on a pedestal and
taking such good care of me.He's my little brother, but my big
brother. And he was the onethat got me into running, and like
he just and he would not putup with my crap. Like I'm like,
oh no, this is too hard, and he's just like, shut
up, come on, let's go. You know. He just he was
my strength for so for so manyyears, and and he is to this
(09:37):
day. Like he'll text me everyday and send me a Bible verse and
then and just like, Okay,how are you feeling. And he's kind
of the one that he's my he'smy spokesperson for the family because it is
gets too hard to be able tocommunicate like everything that's going on, especially
when I'm tired, and so I'lljust be like, I'm really tired right
now, can you just tell momand dad like what's going on? And
and he knows just not ask questionsand just do what I need. And
(10:00):
I mean, we just he's thebest. I'm very blessed out and I'm
anyway. We joke around because I'lllike send on my picture of me doing
photo freezes and you can see likethe blood and he's like, oh I
just saw blood. I'm like,you're so thankful. I'm the one that
I see him. You were justsuch a baby. Was like, yeah,
because it's ready. Is he married? Yes, he has a wonderful
My sister in law's amazing Vanessa andmy two nieces and I just love them
(10:24):
so much. They're so cool andI miss them so much because it's hard
being like I was really sick whenthey were when they were all younger,
and so I see them and Iget to see them as much as I
can, but there was times thatI couldn't like see them because I was
sick or we had to be careful, and that's frustrating, you know,
Like just I mean that part's reallyhard, not being able to be a
(10:46):
part of my family because I haveto distance myself to protect myself. And
they understand, but it still sucks, Like I want to be a part
of everything that they're doing. Andmy cousin just had her a wedding and
I was sick in the hospital andI had to watch it, you know,
online, and so things like that. When I don't get to be
a part of life, I getfrustrated. And that's why I think I
(11:07):
do fight so hard for my lifebecause I want to be a part of
it. And you know, thefreedom of health, you don't have it,
you get kind of taken out ofit. And so I missed my
cousin's wedding and that was really hard. But I'm going to get better and
then I won't be missing out allmy life. No, you already,
(11:28):
I'm believably strong. Is there anythingyou want to say that's important to you,
I think, I mean, weall know how important our breath is,
and I do think that I cansay it all day long, but
it is something you have to bereminded of every day. So if you
can just be cognizant of that andjust, you know, every morning,
(11:50):
maybe take that deep breath in themorning and be thankful for it. And
when you're thankful for your breath,the day just goes a lot smoother because
you have your perspective straight and likebeing in traffic, you know, just
take a deep breath, like,Okay, you know what, I can
breathe. I can get through this. And just when you're dealing with something,
just go back to your breath becauseyou have your breath. And it's
(12:11):
always funny because I'll be reading,like I'll be listening to these meditation things
are like okay, now, takea deep breath, and I'm like,
really, it's one of those Bibleverses you put on it nine. It's
like, take a deep breath,and I'm laying there like no, I'm
not going to do it. I'lljust feel like yeah, because and then
(12:31):
I'm just like, really, areyou just messing with me right now?
But yeah, so you can takethat deep breath. So do it,
like, take that deep breath anddon't take it for granted. And when
you're but and remind yourself because youwill forget, because I forget. And
when I'm breathing that one hundred andtwo percent, soon I will be taking
some deep, deep breath and justI can't wait, wow and go bahamas.
(12:58):
Yes, yes, that's my favoritething ever is And I do feel
better when I'm out in nature.Is the ocean, water, and I
do yoga and I'm grounding like that. I don't know. Grounding is really
huge for me. It's just likenatural ways of making my body feel better.
And so yes, I will bedoing lots of yoga, rolling in
that sand, getting sand everywhere,and yeah, I can't wait. How
(13:20):
about you, Scott, be inthe moment, don't take it for granted.
Yeah, day by day. SoI do have one more question for
you, especially because I had afriend who got cancer and her husband kind
of checked out, he wasn't therefor her, and it was very traumatic
(13:43):
for her. Do you have anyhelp input for spouses that have to be
caregivers And you seem to make itlook so easy, but I know it's
not easy, but maybe you haveany input. Mm hm m is it?
(14:11):
I guess I don't know how toanswer for someone else. Well,
I think it's hard to answer forsomeone else like that makes me so sad
that I can't imagine, not likethat's you know, you're that's I don't
know. I just it's hard forme to fathom that you would check out
on the person you love, oreven not even the person you love,
(14:35):
but just like a person that you'respending your life with or whatever your relationship
is, to not support that personand be there for him. And well,
I think that's a big testament toyou, because you do make it
look so easy and I do feelso loved and in the fact that I
don't feel like a burden, andhow I need that freedom so when I
(14:58):
do fight, so you've just setme up for so I can't fail.
And I just think that's a hugetestament to you. But I think,
you know, it goes back towhat I just said, is day by
day and don't get ahead of yourself, because I could let myself go down
the road or the rabbit hole likeshe said, and think about the things
that could happen and you know whatthe process is going to entail. And
(15:22):
if I sit there and I dwellon that, then how am I going
to be in the moment? Howam I going to you know, be
there today and be present, takecare more? You know, maybe they
do get overwhelming that. I thinkwhat he's trying to say too is to
not I think they do get overwhelmed. And I think, like you said,
you have to be in the momentwith that person. And maybe he
checked out because I mean, thatis a lot to take on and it's
(15:48):
just just takes a special person.And I'm not saying that he's not special,
and but it's like I got,I got really blessed. God knew
who to God knew who I needed, and that's why we met that day
at that bar. Yeah that's funny. Yeah, But I mean everyone thought
we met at Sunday school. Ilove. Yeah, yeah, they all.
(16:11):
My mom was like, who areyou talking to? Like, you
know, she was like, andI was like, Oh, it's okay,
mom, we met at Sunday school. It's fun nobody yeah, because
she was like, and I getit. I'm living by myself in Dallas
working at Author Anderson and I'm liketalking to some boy that I met in
a bar in Dallas. So Ihad to kind of sugarcoat it a little
soup to calm her down. Andthen later when they met, she's like,
(16:37):
Scott, to tell me, youdidn't want to meet in Sunday.
He's like, no, we didn't. I'm looking along. I wish I
could answer that question better, youknow, I wish I could provide her
question about you know, caregiver andproviding insight and what you said is like
day by day for those people thatmaybe feel too overwhelmed, and it's an
(17:02):
important question. It's Yeah, itmade me. I never forget because she
was talking. She has passed awaysince, but she had cancer. Really
she was struggling and she would tellme and she'd go, he's going play
golf and he doesn't even come check, and like, it was so hard
for me. It's rare, though, and that's sad. Yeah, because
(17:23):
we've seen some amazing caregivers. Imean Maria, I mean my friend Beth's
dad, I mean I see Ihave seen some incredible I think that maybe
he wasn't the best guy, butbecause he don't Yeah, I don't think
you check out on people. Youlove and care about whether or not the
marriage was whatever. I think thatthat's like a kind of a heartless person,
(17:44):
to be honest. So I don'teven think that because I've seen some
amazing caregivers. I mean I seemore amazing than not. Well that makes
me feel better, Yeah, Ireally have. And people who don't even
care about what they're going through becausethey are there for that person. I
mean I see that way more thanI hear that stuff. I think that
was a very sad story, buthas nothing to do with the majority for
(18:11):
sure. Yeah, I mean thosepeople. I don't even think you can
talk to somebody like that because they'remore selfish like that, it wouldn't even
matter. And in college I datedthat right and then but God protected me
from someone that was so sheal,I mean to the point where like they
the family fed up. I hadsick of hibrosis and I was in the
hospital and she came to visit andshe's like, what do you have?
(18:33):
Like didn't like yeah, I wasn'tlike yeah. I wasn't like how are
you doing? It was what doyou have? And then he it was
during spring break and he went offto Colorado to take care of his family
or to take care of his friends, and like, and I I had
died on the table, like thiswas a whole nother thing, and I
kind of that's a whole nother story. But I came like I was after
(18:53):
I was recovering, and I waslike, can you come visit me?
You're only an hour away because hewas in Waco and I was like,
can you just come visit me?He's like, you're so selfish for you
to ask me to come visit youwhen I just got back from Colorado.
Do you know how hard it isto take care of people in my house
in Colorado? And I was like, that's what I mean, Like,
that's a selfish person. Yeah,and so and God was telling me,
(19:15):
right there, no, no Scott'scoming. This boy has some things he
needs to work out and he he'snot ready, he's not worthy of you,
and so yeah, and like andit was hard. Like that did
put me in a various situation whereit's like, wow, is anyone ever
gonna love me? And having youknow, no, can anyone take me
(19:37):
on? Because I know I amhard? Like so, yeah, it's
so again with what you say,though, is for someone to not be
overwhelmed. I can. I mean, being someone that has to be taken
care of. The best thing acare taker can do is not make them
feel like a burden. And tothe best thing they can do is what
he does is make me feel solove that I know that there's not he
(19:59):
doesn't want to go golf when I'msick, like he doesn't. He wants
to be there for me, andhe made that so clear through the twenty
years. And so I'm just I'min such a safe place with him to
be vulnerable and to be sick andto know that he's just right there taking
care of me, and I think, no, cry, I'm not going
(20:22):
to cry. Yeah you're crying.I'm not crying. Crying. Twenty years
twenty years in January, Yeah,wow, anniversary. Yeah. So we've
known each other for two Yeah,so you basically have CF two. That's
just he's basically yeah, he's takingit on. So I always say he's
(20:47):
going to have a lot of jewelsup in heaven on your crown because of
me. That was one of thefirst things you told me. Yeah,
he's my Yeah, he's my white, my white what is it my especially
(21:07):
well, thank you? What anamazing shows. So good. Well,
and we have some more to do. We got to point the friends in
and your children if you want toso then we keep going. Yeah.
Story, Yeah, it is interesting, like we talked about, just there
the aspects of it. Hopefully peoplecan relate to it and they don't have
(21:32):
to have cf our lung transplant torelate to it in the sense that you
know, this is a story offaith, and this is a story of
endurance, and this is the storyof a strong mind, a supportive system,
advocacy. Just there's there's a lotof there's a lot of parts to
it. Workan donation, I mean, all right, and die my ride
and die yea. Parents do theyhave a big part in it? How
(21:55):
they race you, because that's noteasy to do. Yeah, I mean
that's what I say, Like I'vealways said, just I have healthy children,
Like I can't even imagine what mymom and dad in George, Yeah,
well, thank you so much.Do we want to tell them where
they can find her? I doyou? Are you okay with like people
(22:15):
message you or anything? Tell themabout your Facebook? And yeah, okay,
so I have on Facebook, Ihave so a strong It's a page
that you can find it's so astrong all one word, and that has
actually documented my journey since day one, so you can go back and look
at all the posts from that.And I have soa Yoga on Instagram which
(22:37):
I document more of my yoga andphysical journey on there. And yeah,
it's amazing, Yeah, amazing.Everybody follow her. You will be inspired,
yes, made stronger, just helpin everyday things. Even though she
fights an amazing battle. I amhere to gain a perspective. I don't
(22:59):
mind them use I'll do the heavylifting. You gain the perspective. That's
awesome. Thank you so much,so much to both of you. Thank
you. Hi. I'm Olivia Booley. I'm one of the gossip girls here
at Tupash Podcasts. You can findme on Instagram at livs world and if
you need me, I'll be cryingmy Bentley. I'm Marcella, co host
of the Tupash podcast. You canfind me on all social media platforms Marcella
(23:25):
Roinery. You can also find meon TikTok Marcella Roinery seven and I say
whatever the fuck I want. Yeah, that's all right. My name is
Cruz Koffer. You can find meon Instagram and that's pretty much it,
and let's do some tequila together onthe next show. If you enjoy listening
(23:45):
to our show, please follow tupashPodcasts on all social media handles and tell
all your family and friends about it. And tupash podcast is on Instagram,
TikTok, YouTube, Facebook, andTwitter. Also, don't hesitate to leave
a review, comments, feedback,or ask us any questions and follow me
on my personal social media on Instagramat Gaby dot Talks and Facebook at Gabrielle
(24:10):
Kindler, Gilmour and I have NoSecret. Thank you for listening. Thank you
Welcome to the Tupash Podcast. Iam Gabrielle. I'm a former New York
Mafia princess originally from Austria. Iam the mother of three and the owner
of Tupash Boutique and here with mybeautiful co host Masella, my daughter.
Hello, I'm Marcella. I'm adancer, choreographer, model and designer for
(00:22):
Tupash and I say whatever I want. My name is Cruz. I am
a stylist. I also own theSociety Salon in the Design District. And
I am a short, little Mexicanwith the big personality. What will they
say next? Welcome to the TupashPodcast. Was that dangerous or I don't.
(00:51):
I'm sure the doctors got smart andfigured it out because obviously camp was
canceled. But anyway, so,yeah, once we get sick, you
know, with that, that's that'sit. And it's it's really you can't
have a transplant once you have thepatia, yeah and so and a lot
of people are always just like,oh, so, you know, you
had to endure so much with sixtyfibrosis, why don't you just get a
lung transplant? You know, andlike, once you can have one,
(01:14):
and well, my story is exactlywhy, because rejection isn't the full proof
like cure. Really, the truecure is curing six fibrosis, which they
are so close. There's so manydrugs that can do. And there's a
really cool story. I'm actually talkingto a mom that has a daughter or
yeah, I guess she's a daughterthat because she's still in she's still she's
(01:34):
still they figured out that the daughterhas the fetus has six fibrosis, and
so she's figured she's on this journeyto keep her baby healthy. Is even
in the in utero, and she'staking medicine. She's taking the medicine.
The healthy mom is taking Trikafta,which is it's a pill that helps people
(01:55):
control their CF and it helps controlthe DNA, and so then the baby
is doing so well. I don'tknow everything that's going on now. I
need to call and just type orcheck on her. But she's such an
awesome mom, such an advocate.She's like figuring out all ways to keep
her baby healthy. And the baby'snot even here yet, but I think
or maybe she did deliver. Ineed to check. But it's just really
cool what they can do now.So like to the point where the baby
(02:17):
probably won't even have symptoms of CFbecause she's taking this pill during pregnancy and
doing breastfeeding is the plan too.What howcohol is that the whole thing that
Alison was doing trek afta. Probablyit came from the ocean, right,
Okay, so hypersal hypersonic saling.So she's inhaling salt water. And I
(02:38):
will say, I feel really goodwhen I go to the ocean, like
so good to the point where we'regonna go back soon, like that'll be
my that's after my transplant. Wewere going back to the Bahamas. But
yes, salt water when it drawsout any kind of mucus that you have
built up, and that's what she'sprobably inhaling hyper cell, which helped me
(03:00):
a lot. She's probably doing tobramysin as well, which is in inhaled
antibiotic, I'm pretty sure. Andthen she's probably taking tri Kafta, which
I would I would hope, Ihighly recommend, because it's too late for
me because I've already had the transplant, So I mean, I take it
for my sinuses, but my lungsdon't have CF anymore. It's just has
rejection. But if you have cfyou can take tri Kafta and that I've
(03:23):
seen kids lung function actually go upand they heal with tri kafta. So
there's so many things there. DoI think that sounds familiar that that was
a pill that it came out nottoo long ago, right, And yeah,
it was super expensive. I thinkit's kind of the latest, most
groundbreaking drug that they've developed, andso they were it was in testing phase
(03:46):
before her first transplant, and shewas kind of getting close to that transplant
and it's like, can we dothe tri kafta and she was just it
just it was still in testing phase. Yeah, missed. She really just
kind of missed that. Yeah,they have. My dog really wanted me
to hold out as long as Icould, but it was to a point
where no quality of life. Ineeded new lungs. So I missed that
boat. But that's okay because it'sso cool to see all these cffors that
(04:10):
had like fifty percent line function andnow they're having seventy because they are healing
with tri ca afte. Like Isaid, level, Yeah, the celluar
level, which again I don't understandall of it, but it's really It
is cool because again, once yourlungs do scar, they're hard to you
don't usually get them that lung functionback. But Trikafta is like healing their
(04:31):
lungs. It's so wow. Yeah, I mean again, I think to
a point now, I mean it'llbe like, oh you have CF,
Okay, just take a few pills, You're good to go. Like it's
it's going to be I see itin the future. It's going to be
pretty much cured. And that isso cool for and then even just you
know, my children are carriers,and so who knows, like maybe a
(04:53):
CF maybe might pop out down theline, but they'll be fine. So
yeah, baby, is not howmuch contact do you have? Not maybe
physical because of that virus, butwith other cystic fibrosis, I'm not you
know, again, we always kindof had to stay away away, so
we I mean, I'll have Ihave friends on Facebook and now I think
(05:13):
because I've had a transplant, butagain we just we have to be so
careful with germs and but so yeah, I have a friend that she had
her transplant and she's doing really welland had a baby, well had a
baby then had had a transplant.Yeah, oh no, no, no,
no, oh, this is actuallyreally cool. She had her transplant
and then her sister in law Icarried her baby. Does people again?
(05:39):
I just I just being someone thatis always kind of in a situation where
I'm vulnerable and I need help,and there's just so many beautiful people out
there that are so willing to justlift me up or help in some way.
And I just it's such a testamentbecause I know this world is hard
and it's scary, and but Isee so much beauty in this world because
(06:00):
of all the help that I havehad in my journey and how caring people
are. That's so amazing. Oh, Scott, are you ready for this
again? Yes? I can't tell. Yeah ready. I love how common
it he is, like, oh, yeah, it does. It makes
me believe in me because he believesin me. I mean we, I
mean I I I. I ama proponent of hey, let's not get
(06:25):
on the table until you have toget on, like I get the balance.
And so if she can be stableand we can prolong that and she
is okay, of course I wantto do that. But at the same
time, I you know, whenthat time does, we'll be ready.
And I can't wait for her tobe able to take the breath. Yeah,
(06:46):
yeah, because I mean he hasto wake up in the morning and
hear me breathe. And I'm surethat makes you probably claustrophobic as well.
Like some doctors. It's really likesome nurses, like it's hard for them
to even listen to my lungs becauseit's just you know, there's like,
oh, like how because you can'tyou hear the lack of airflow, and
it's just very claustrophobic. But Ifeel like I mentally have a stronghold on
(07:09):
it, and I'm not gonna godown the rabbit hole of like thinking about
my breath too much, just enoughthat it's working for me, because if
you do start thinking about how unsatisfyingyour breath is, it can put you
in a state of like panic.Do you cough? Yeah? I do,
and right now, especially after thevirus, I kind of do.
I had like awesome abs. Imean I kind of. I mean because
(07:30):
I cougheing, like you know,my my muscles are strong because I have
coughed so much, especially when beforelong transplant. Yeah, that's a good
way to get abs. Just ahalf black and laugh laughing is a good
way to get abs. So,yeah, what's the pain, like like
after the transplant, you know,I think they have me drugged up pretty
well that I'm I think what hurtthe worst was my feeding to the second
(07:54):
time around because they had to diginto my abs to make the have a
feeding tube. So I didn't eatfor forty days like I don't because you
have drain, they stick grain tubesinto your I forgot about that. I
think you forget. It's kind oflike childbirth. TI like you just like
I really didn't want to talk aboutthat. But yeah, so and then
(08:15):
I remember there's one doctor I don'tlike, I don't but he would he
would like pull the tube out.And then he's like, hey, I'm
just ditch you up real quick andlike not numb it. You just like
stitch me up. And I justlike that's okay, you know. So
I just I've endured so much,like it's like now a challengeably stitch Let's
see what I can do, youknow, And but like and then other
(08:35):
doctors are like, no, Iwould never do that to you. We're
gonna numb it first. And thenso I mean every surgeon is different,
but I've learned to endure different kindof pain, levels of pain, to
the point where I've learned to mentallyjust look at it as pain and separate
it from your body because You're notpain is just there to protect you from
thinking your body's dying. And I'mjust like I'm not dying. I'm just
getting stitches, you know, likenothing's happening, and you have to just
(08:56):
mentally separate yourself from the pain.And to point where I'm just like,
okay, well, it just kindof come kind of crazy. I think
you're just like, hey, bringit on, Like you know, how
is your brother? Like I lovemy brother. I'll start crying if I
can go. My brother. He'sso awesome because all my life, you
(09:16):
know, he's he's so funny becausehe's always put me on a pedestal and
taking such good care of me.He's my little brother, but my big
brother. And he was the onethat got me into running, and like
he just and he would not putup with my crap. Like I'm like,
oh no, this is too hard, and he's just like, shut
up, come on, let's go. You know. He just he was
my strength for so for so manyyears, and and he is to this
(09:37):
day. Like he'll text me everyday and send me a Bible verse and
then and just like, Okay,how are you feeling. And he's kind
of the one that he's my he'smy spokesperson for the family because it is
gets too hard to be able tocommunicate like everything that's going on, especially
when I'm tired, and so I'lljust be like, I'm really tired right
now, can you just tell momand dad like what's going on? And
and he knows just not ask questionsand just do what I need. And
(10:00):
I mean, we just he's thebest. I'm very blessed out and I'm
anyway. We joke around because I'lllike send on my picture of me doing
photo freezes and you can see likethe blood and he's like, oh I
just saw blood. I'm like,you're so thankful. I'm the one that
I see him. You were justsuch a baby. Was like, yeah,
because it's ready. Is he married? Yes, he has a wonderful
My sister in law's amazing Vanessa andmy two nieces and I just love them
(10:24):
so much. They're so cool andI miss them so much because it's hard
being like I was really sick whenthey were when they were all younger,
and so I see them and Iget to see them as much as I
can, but there was times thatI couldn't like see them because I was
sick or we had to be careful, and that's frustrating, you know,
Like just I mean that part's reallyhard, not being able to be a
(10:46):
part of my family because I haveto distance myself to protect myself. And
they understand, but it still sucks, Like I want to be a part
of everything that they're doing. Andmy cousin just had her a wedding and
I was sick in the hospital andI had to watch it, you know,
online, and so things like that. When I don't get to be
a part of life, I getfrustrated. And that's why I think I
(11:07):
do fight so hard for my lifebecause I want to be a part of
it. And you know, thefreedom of health, you don't have it,
you get kind of taken out ofit. And so I missed my
cousin's wedding and that was really hard. But I'm going to get better and
then I won't be missing out allmy life. No, you already,
(11:28):
I'm believably strong. Is there anythingyou want to say that's important to you,
I think, I mean, weall know how important our breath is,
and I do think that I cansay it all day long, but
it is something you have to bereminded of every day. So if you
can just be cognizant of that andjust, you know, every morning,
(11:50):
maybe take that deep breath in themorning and be thankful for it. And
when you're thankful for your breath,the day just goes a lot smoother because
you have your perspective straight and likebeing in traffic, you know, just
take a deep breath, like,Okay, you know what, I can
breathe. I can get through this. And just when you're dealing with something,
just go back to your breath becauseyou have your breath. And it's
(12:11):
always funny because I'll be reading,like I'll be listening to these meditation things
are like okay, now, takea deep breath, and I'm like,
really, it's one of those Bibleverses you put on it nine. It's
like, take a deep breath,and I'm laying there like no, I'm
not going to do it. I'lljust feel like yeah, because and then
(12:31):
I'm just like, really, areyou just messing with me right now?
But yeah, so you can takethat deep breath. So do it,
like, take that deep breath anddon't take it for granted. And when
you're but and remind yourself because youwill forget, because I forget. And
when I'm breathing that one hundred andtwo percent, soon I will be taking
some deep, deep breath and justI can't wait, wow and go bahamas.
(12:58):
Yes, yes, that's my favoritething ever is And I do feel
better when I'm out in nature.Is the ocean, water, and I
do yoga and I'm grounding like that. I don't know. Grounding is really
huge for me. It's just likenatural ways of making my body feel better.
And so yes, I will bedoing lots of yoga, rolling in
that sand, getting sand everywhere,and yeah, I can't wait. How
(13:20):
about you, Scott, be inthe moment, don't take it for granted.
Yeah, day by day. SoI do have one more question for
you, especially because I had afriend who got cancer and her husband kind
of checked out, he wasn't therefor her, and it was very traumatic
(13:43):
for her. Do you have anyhelp input for spouses that have to be
caregivers And you seem to make itlook so easy, but I know it's
not easy, but maybe you haveany input. Mm hm m is it?
(14:11):
I guess I don't know how toanswer for someone else. Well,
I think it's hard to answer forsomeone else like that makes me so sad
that I can't imagine, not likethat's you know, you're that's I don't
know. I just it's hard forme to fathom that you would check out
on the person you love, oreven not even the person you love,
(14:35):
but just like a person that you'respending your life with or whatever your relationship
is, to not support that personand be there for him. And well,
I think that's a big testament toyou, because you do make it
look so easy and I do feelso loved and in the fact that I
don't feel like a burden, andhow I need that freedom so when I
(14:58):
do fight, so you've just setme up for so I can't fail.
And I just think that's a hugetestament to you. But I think,
you know, it goes back towhat I just said, is day by
day and don't get ahead of yourself, because I could let myself go down
the road or the rabbit hole likeshe said, and think about the things
that could happen and you know whatthe process is going to entail. And
(15:22):
if I sit there and I dwellon that, then how am I going
to be in the moment? Howam I going to you know, be
there today and be present, takecare more? You know, maybe they
do get overwhelming that. I thinkwhat he's trying to say too is to
not I think they do get overwhelmed. And I think, like you said,
you have to be in the momentwith that person. And maybe he
checked out because I mean, thatis a lot to take on and it's
(15:48):
just just takes a special person.And I'm not saying that he's not special,
and but it's like I got,I got really blessed. God knew
who to God knew who I needed, and that's why we met that day
at that bar. Yeah that's funny. Yeah, But I mean everyone thought
we met at Sunday school. Ilove. Yeah, yeah, they all.
(16:11):
My mom was like, who areyou talking to? Like, you
know, she was like, andI was like, Oh, it's okay,
mom, we met at Sunday school. It's fun nobody yeah, because
she was like, and I getit. I'm living by myself in Dallas
working at Author Anderson and I'm liketalking to some boy that I met in
a bar in Dallas. So Ihad to kind of sugarcoat it a little
soup to calm her down. Andthen later when they met, she's like,
(16:37):
Scott, to tell me, youdidn't want to meet in Sunday.
He's like, no, we didn't. I'm looking along. I wish I
could answer that question better, youknow, I wish I could provide her
question about you know, caregiver andproviding insight and what you said is like
day by day for those people thatmaybe feel too overwhelmed, and it's an
(17:02):
important question. It's Yeah, itmade me. I never forget because she
was talking. She has passed awaysince, but she had cancer. Really
she was struggling and she would tellme and she'd go, he's going play
golf and he doesn't even come check, and like, it was so hard
for me. It's rare, though, and that's sad. Yeah, because
(17:23):
we've seen some amazing caregivers. Imean Maria, I mean my friend Beth's
dad, I mean I see Ihave seen some incredible I think that maybe
he wasn't the best guy, butbecause he don't Yeah, I don't think
you check out on people. Youlove and care about whether or not the
marriage was whatever. I think thatthat's like a kind of a heartless person,
(17:44):
to be honest. So I don'teven think that because I've seen some
amazing caregivers. I mean I seemore amazing than not. Well that makes
me feel better, Yeah, Ireally have. And people who don't even
care about what they're going through becausethey are there for that person. I
mean I see that way more thanI hear that stuff. I think that
was a very sad story, buthas nothing to do with the majority for
(18:11):
sure. Yeah, I mean thosepeople. I don't even think you can
talk to somebody like that because they'remore selfish like that, it wouldn't even
matter. And in college I datedthat right and then but God protected me
from someone that was so sheal,I mean to the point where like they
the family fed up. I hadsick of hibrosis and I was in the
hospital and she came to visit andshe's like, what do you have?
(18:33):
Like didn't like yeah, I wasn'tlike yeah. I wasn't like how are
you doing? It was what doyou have? And then he it was
during spring break and he went offto Colorado to take care of his family
or to take care of his friends, and like, and I I had
died on the table, like thiswas a whole nother thing, and I
kind of that's a whole nother story. But I came like I was after
(18:53):
I was recovering, and I waslike, can you come visit me?
You're only an hour away because hewas in Waco and I was like,
can you just come visit me?He's like, you're so selfish for you
to ask me to come visit youwhen I just got back from Colorado.
Do you know how hard it isto take care of people in my house
in Colorado? And I was like, that's what I mean, Like,
that's a selfish person. Yeah,and so and God was telling me,
(19:15):
right there, no, no Scott'scoming. This boy has some things he
needs to work out and he he'snot ready, he's not worthy of you,
and so yeah, and like andit was hard. Like that did
put me in a various situation whereit's like, wow, is anyone ever
gonna love me? And having youknow, no, can anyone take me
(19:37):
on? Because I know I amhard? Like so, yeah, it's
so again with what you say,though, is for someone to not be
overwhelmed. I can. I mean, being someone that has to be taken
care of. The best thing acare taker can do is not make them
feel like a burden. And tothe best thing they can do is what
he does is make me feel solove that I know that there's not he
(19:59):
doesn't want to go golf when I'msick, like he doesn't. He wants
to be there for me, andhe made that so clear through the twenty
years. And so I'm just I'min such a safe place with him to
be vulnerable and to be sick andto know that he's just right there taking
care of me, and I think, no, cry, I'm not going
(20:22):
to cry. Yeah you're crying.I'm not crying. Crying. Twenty years
twenty years in January, Yeah,wow, anniversary. Yeah. So we've
known each other for two Yeah,so you basically have CF two. That's
just he's basically yeah, he's takingit on. So I always say he's
(20:47):
going to have a lot of jewelsup in heaven on your crown because of
me. That was one of thefirst things you told me. Yeah,
he's my Yeah, he's my white, my white what is it my especially
(21:07):
well, thank you? What anamazing shows. So good. Well,
and we have some more to do. We got to point the friends in
and your children if you want toso then we keep going. Yeah.
Story, Yeah, it is interesting, like we talked about, just there
the aspects of it. Hopefully peoplecan relate to it and they don't have
(21:32):
to have cf our lung transplant torelate to it in the sense that you
know, this is a story offaith, and this is a story of
endurance, and this is the storyof a strong mind, a supportive system,
advocacy. Just there's there's a lotof there's a lot of parts to
it. Workan donation, I mean, all right, and die my ride
and die yea. Parents do theyhave a big part in it? How
(21:55):
they race you, because that's noteasy to do. Yeah, I mean
that's what I say, Like I'vealways said, just I have healthy children,
Like I can't even imagine what mymom and dad in George, Yeah,
well, thank you so much.Do we want to tell them where
they can find her? I doyou? Are you okay with like people
(22:15):
message you or anything? Tell themabout your Facebook? And yeah, okay,
so I have on Facebook, Ihave so a strong It's a page
that you can find it's so astrong all one word, and that has
actually documented my journey since day one, so you can go back and look
at all the posts from that.And I have soa Yoga on Instagram which
(22:37):
I document more of my yoga andphysical journey on there. And yeah,
it's amazing, Yeah, amazing.Everybody follow her. You will be inspired,
yes, made stronger, just helpin everyday things. Even though she
fights an amazing battle. I amhere to gain a perspective. I don't
(22:59):
mind them use I'll do the heavylifting. You gain the perspective. That's
awesome. Thank you so much,so much to both of you. Thank
you. Hi. I'm Olivia Booley. I'm one of the gossip girls here
at Tupash Podcasts. You can findme on Instagram at livs world and if
you need me, I'll be cryingmy Bentley. I'm Marcella, co host
of the Tupash podcast. You canfind me on all social media platforms Marcella
(23:25):
Roinery. You can also find meon TikTok Marcella Roinery seven and I say
whatever the fuck I want. Yeah, that's all right. My name is
Cruz Koffer. You can find meon Instagram and that's pretty much it,
and let's do some tequila together onthe next show. If you enjoy listening
(23:45):
to our show, please follow tupashPodcasts on all social media handles and tell
all your family and friends about it. And tupash podcast is on Instagram,
TikTok, YouTube, Facebook, andTwitter. Also, don't hesitate to leave
a review, comments, feedback,or ask us any questions and follow me
on my personal social media on Instagramat Gaby dot Talks and Facebook at Gabrielle
(24:10):
Kindler, Gilmour and I have NoSecret. Thank you for listening. Thank you
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