Prepare to be inspired by the incredible Selwa Mitchell in our latest Too Posh Podcast episode. Selwa's journey is one of unparalleled strength and resilience. After her second lung transplant, she faced unimaginable challenges: from losing her hair and enduring a 40-day fast due to a tracheotomy, to fighting off rejection and surviving COVID-19.
Selwa shares the emotional rollercoaster of navigating life without a sense of smell, eating for texture, and proving she could live independently post-transplant. Her battle with Cystic Fibrosis is a constant climb, overcoming one mountain after another with unwavering determination.
Discover the delicate and critical balance required for her upcoming third lung transplant – sick enough to need it, but not sick enough to die on the table. Listen to her heartfelt stories about the complexities of the transplant list, the harrowing dry runs, and the profound impact of organ donors.
Selwa's unwavering faith, bolstered by prayers and a strong support system, has kept her going. Despite taking 50 pills a day, she remains a pillar of strength, full of gratitude for the extra years gifted by her donors' selflessness. This episode is a testament to the human spirit's power, filled with raw emotions, hope, and sheer determination.
Tune in for a powerful and moving episode that highlights the importance of organ donation and the relentless fight of those battling Cystic Fibrosis. Selwa Mitchell's story will leave you in awe and inspired to live life with more gratitude and purpose.
🌟🫁 #TooPoshPodcast #LungTransplant #CysticFibrosis #OrganDonation #SelwaStrong #SurvivorStory #Inspiration #NeverGiveUp
Selwa shares the emotional rollercoaster of navigating life without a sense of smell, eating for texture, and proving she could live independently post-transplant. Her battle with Cystic Fibrosis is a constant climb, overcoming one mountain after another with unwavering determination.
Discover the delicate and critical balance required for her upcoming third lung transplant – sick enough to need it, but not sick enough to die on the table. Listen to her heartfelt stories about the complexities of the transplant list, the harrowing dry runs, and the profound impact of organ donors.
Selwa's unwavering faith, bolstered by prayers and a strong support system, has kept her going. Despite taking 50 pills a day, she remains a pillar of strength, full of gratitude for the extra years gifted by her donors' selflessness. This episode is a testament to the human spirit's power, filled with raw emotions, hope, and sheer determination.
Tune in for a powerful and moving episode that highlights the importance of organ donation and the relentless fight of those battling Cystic Fibrosis. Selwa Mitchell's story will leave you in awe and inspired to live life with more gratitude and purpose.
🌟🫁 #TooPoshPodcast #LungTransplant #CysticFibrosis #OrganDonation #SelwaStrong #SurvivorStory #Inspiration #NeverGiveUp
Mark as Played
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 withmy beautiful co host Marsella, my daughter.
Hello, I'm Marcella. I'm adancer, choreographer, model and designer
(00:22):
for Tupash and I say whatever theI want. My name is Cruz.
I am a stylist. I alsoown the Society Salon in the Design District
and I am a short, littleMexican with a big personality. What will
they say next? Welcome to theTupash Podcast. Still have some me?
(00:49):
Well, that's I mean, youjust told us something. I think that's
super important to know that you actuallylost your hair after your second transplant.
How much of it? I stilllike. It was just it just was
so thin to the point where Imean I was like, you you'll see
picture, you can see pictures.But so I think it's well the shock
(01:11):
your body goes through. So itwas just so thin. And but then
like I said, I was like, I want hair extensions. And then
I was like and I want toget my lashes done and I want to
get my nails done because hey,I'm not dead yet, you know.
So yeah, we but it wasI think the medicine tackle limus, the
(01:33):
rejection meds. I think I kindof put your body in a shock too,
so you do lose hair. Butthen I you know, that's the
thing. I grew it all.It took a while, but I grew
it all back. But then Imight lose it again. I don't know.
I didn't lose it on my firsttime. I think I just lost
it on my second because I wasdying the fact that you were a nice
(01:53):
yeah days. Yeah. I didn'teat for forty days, I think,
and I didn't yeah, and shewas she had a draak, so she
was yeah for gosh, like fiveweeks before she could yeah eat, And
I remember like you weren't there,and I was by myself, and they
were like, you can eat now, because I think they were worried about
(02:15):
like if you swallow asperating is thatwhat it was, babe? So I
finally proved them that I could swallow, and I was like, oh my
gosh, I'm gonna eat. Andhe wasn't there, So I just ordered
all this Chinese food, and Iwas like so excited and I took one
bite and I couldn't taste it becauseall I mean I could it all tasted
so bad, like I had cranberryjuice, which I love, and like
(02:38):
a sprite. I mean, Iwas all about to just like dig in.
And I guess after forty days likenot being able to eat, I
don't know if your taste was likego take a nap for a while,
or the medicines and just the surgery. So it took a long time to
get my taste back too. Soit was just like, really, I'm
tastes different. Do you like thingsdifferently? Well? No, but I
(03:00):
will say this, this is aweird CF thing. I have really bad
CF sinuses, and so I don'thave a sense of smell. I know,
right, that's like yeah, soI actually eat more for texture.
I mean I do taste, likeso your tongue can taste salt, sour
and sweet bitter, but when thenyou add a smell to it, apparently
(03:22):
it intensifies it like by a thousand. So I have like five tastes and
then I eat for texture. LikeScott makes fun of me because I'll be
like that tastes crunchy or that youknow I don't or I can't taste that
at all. So taste has alwaysbeen weird anyways. But I was just
like after forty days, like thinkingI was about to eat and yeah,
that's a little that kind of broughtme. I was like to be mad
(03:46):
because I just wanted to eat.Yeah, but again because I had to
prove so because again they I mean, they're you know, they're all up
in there with their nerves and cuttingeverything and so it makes it hard to
swallow. And so they were soworried that if I ate and swallowed and
the food went to my lungs,it could give you the moment. So
I had to prove that I couldswallow. Again. I had to actually
too, It's like I had toprove that I could live on my own.
(04:10):
What is it like physical therapy whereit's opposite occupational therapy. So I
had to prove that I could shavemy legs. So like I'm like literally
like naked or shaving my leg provingthat I can do things function. And
so I had like kind of proveagain like that I can live on my
own. You went to the narrowhospital. So she once they released her
(04:32):
from the transplant, I see youbasically she went to uh the Neurow hospital
because of the stroke. Yeah,so I had to kind of prove like
that I could be on my own, that I could walk up the steps
and like I have, I firsthad to learn how to walk, and
so that was a whole other aspectof it that just had another hurdle.
Yeah, but I always say,like see if it just it's really good
(04:57):
at putting a big mountain in frontof me, and then I just have
to like on anything that I wantwrite anything, children, school, job,
life, just breathing. I mean, it puts a mountain and then
I but I'm really good at climbingit. It just takes a lot longer.
But so what do you have towhen you get the transplant like you
have had it now for five years? Do you have to take the rejection
(05:20):
drugs every day? Yes, veryIt's very important because I mean I went
into a state of rejection because ofviruses and it's a cellular level, but
sometimes you can go into a rejectionbecause your immune system really kicks in.
And so what the immune suppressants do, like the is the the taculmus.
(05:43):
The yeah, the print zone.It it makes my immune I don't have
an immune system like at all.Like I mean, that's why I do.
Like I'll get a cold and youguys would probably get up with this
same cold, and you would haveit for like thirty minutes, so your
body would fight it and you'd befine. Like I mean, to the
point where you know, I'm surethat I have to assume that everyone is
(06:06):
sick. I mean in a way. So I mean, obviously I don't
drink after my kids. I mean, when they come home from school,
they take their shoes off and washtheir hands, and and it's hard because
all I want to do is justhug them and sweeze them. But I
have to be careful because, especiallyright now that they're at school, they're
bringing home lots of germs, andI am in a vulnerable state right now.
(06:28):
So that's part of the balance thedoctors have to figure out. It's
like, how do we suppress herimmune system enough to keep you know,
her body from injecting the lungs,but how do we keep it high enough
to where if she does get acold, that she has a chance of
fighting it. What was COVID,like for you hiding hiding. Yeah,
(06:51):
yeah, we just it was terrifyingjust the But what's interesting is when she
because she evaded it for at leasta year and then she finally got COVID.
We went to Ireland and I gotback and I was I was like,
babe, I don't feel good.And but the thing was, is
(07:15):
I mean because they put I mean, I took the vaccine and because for
me I had to like gether.Yeah, And so honestly I thought it
really well because I think my bodyalready had like knew how to fight it
because of the vaccine. Maybe.And then I also was on what did
I get on? And they tookme straight to the emergency room. Oh
wow, they did monoclonal antibodies,and so they we they just injected her
(07:38):
with those and those help, andthat's when my body had some help fighting
that. But now, like alittle cold, there's no vaccine, there's
no antibodies, so I'm having tofight this cold on my own and my
body barely has any of the immunesystem. And then that's when my lungs
git so attacked. And that's whathappened in January. And then actually just
about a month ago where I've lostmy function to where I am at this
(08:00):
point. There's colin colds. Onewas that virus. Got a second one
yeah, one was influence. Yeah, a total normal cults. Like again,
you guys would get it, you'dbe fine, Like, but my
body is like, oh that likethe flu is like or whatever this thing
is. The virus is just like, oh, this is an easy body.
I want to hang out here.Nothing's fighting me here. Well,
(08:20):
on top of that, they gaveher antibotics that her body didn't like.
So on top of this virus,it's freaking havoc and her lungs. Then
she gets on an antibotic and shehas a reaction to it, and the
reaction is short of brand affects.So I'm like, so I didn't realize
it was the antabotic until but soI'm I met twenty percent at this time,
(08:43):
like, and so that's why wemoved so quickly with Duke, because
I thought we were I thought Iwas declining tremendously really quickly. But when
I got off the antibiotic, Iwas like, wait, I'm starting to
get my lung function back. Andso we realized it was the he realized
it. He figured it out throughso much start that it was the antibiotic
that was actually making me shorter breath. And so once I got off that,
(09:05):
I got back to this thirty percentthat I'm at that I feel actually
pretty stable at. So now Ifeel like I have a little freedom and
a little time to be able towait till September fourth to be evaluated,
and then once I'm evaluated at Duke, I'll be evaluated at Phoenix, And
so you're doing it back to back. Yeah, pretty much. I'm going
to go to Duke from five fifthto the twelfth, and then I think
(09:26):
the eighteenth is what they're thinking.I'll go to Phoenix and they won't do
all the tests because Duke's already donesome of it, but they'll both do
their analysis on what they think.And I mean, at this point,
I don't know because my body isweird and I am very intuned to my
body though, that's the thing,And I think, you know, when
like a lot of CF kids,we kind of reckon. I mean,
(09:48):
I knew right away when I startedlosing my long function, I could feel
it, and so I just Ifeel like, right now, maybe I'm
stable enough. I mean, Imean, it's a lot harder because you're
tired, and it's just harder tobreathe, and it's usually after I eat.
It's really hard because you know,like when you're full, it's just
a little and so I need allthe function I can get. Anyways,
(10:11):
So we'll see. But I'm thinkingmaybe they'll be like, you're not ready
for the table just yet. Let'smonitory. But I think that's a great
place to be. And then I'vedone all the leg work and all the
hard work. So then when itis time, like if I get sick
again, yeah, or like,I will have done all the work.
So then they're just like, comeon down, and I won't be like
(10:33):
the second with Phoenix when I waslike basically near death. She can't be
that sick again, won't transfer.Yeah, So I have to be like
we talked about earlier, is thatperfect balance, Yeah, like that perfect
balance of sick enough to need itbut not sick enough to die on the
table. We'll see. So Ihave another crazy question, but it sounds
(11:00):
like it's there's so many legal andwhatever things that go into who gets lungs?
Can you buy them? Yeah?My friends away they would figure that
out. Yes, No, ohI wouldn't and I wouldn't want to go
down that route. I don't know. Maybe people do, I don't know.
I am I'll trust the system.I'll basically get a number, right,
(11:26):
like they'll evaluate me, and there'sa scale and essentially depending on your
need. Yeah, so they'll putme, they'll put a number right,
and so if you're one on thelist, you need them the most in
that area. And then so whena lung comes in, so when the
one, then a match comes inbecause it has to be a match,
right, it can't just be anylungs. It's got to face size and
(11:48):
all that. Yeah, so theyhave to the lungs have to fit.
You know. If they don't fit, they can trim them a little bit.
But yeah, they actually the lungsthat she has, they actually trend.
They didn't fit perfect. So actuallyI had to trim the lungs a
little bit. But I do Ihate this because I am tiny and so
like if a child did come in, I could have their lungs and that
(12:09):
just like that kills me. Butyeah, so it was just it's the
size and the blood type, bloodtype, and I don't know if they
like, well, what's really interesting, It's funny is there's also like high
risk lungs and so like one timewas it was my these were high risks,
but they had to ask me.So when they found a match,
(12:35):
they have to they have to tellyou if it's a high risk. Remember,
so like on my first pair,they were like, they were like,
these are high risk and I kindof was like, okay, god
if and what it means was theperson that had these lungs or the but
I didn't have these. I didn'tget these lungs. But they were in
prison, so they're they're high risk. And the sense that their lifestyle might
(12:56):
be yeah, like so you weretaking on I get right, Like they
have to tell you that, right, They have to tell you if it's
tyrisk. They don't have to tellyou exactly why they're high risk. But
they said it like he was there. So it can be incarceration or it
could be you know, they havehepatitis. You know, there's several factors
that make them high risk. Idon't think they have to tell you exactly
(13:20):
why. They just have to tellyou that they're high risk, and then
you have to say yes or no. Did we did we come to the
assumption that it was like a jailguy or something, or I don't.
I just remember thinking to the Firs, well, so what had happened was
it's called a dry run. AndI for anyone that has to endure a
transplant, this is a dry runsare hard because they what they mean is
they call you and they're like,hey, we have some lungs for you.
(13:41):
And and they're like, so youget there, you do all the
blood work, and you're about toget these lungs, and then they're like
it's no good, like either thelungs aren't good or they are high risk
or I had a Actually for mydry run, I had a fever.
And you cannot be transplanted with afever because they that you have to you
have to be kind of healthy,which is weird because we're not healthy.
(14:05):
So I but that dry run.So I didn't get the lungs of the
prisoner, I swear, and whichand I remember maybe they do tell you
because I think now that I thinkabout it, the ones you have now
the person hatie. Yeah, Andthen so I had to take pills to
make sure I don't get hepatitis.But at the time, We're like,
we'll take whatever course. But andI don't have hepatitis, but there is
(14:28):
that chance that taking on that DNA. But you just take some pills to
make sure that you don't get it. But yeah, so, I mean,
and that's what's so hard as youSo now going into my third I
hate this part because you know,I'm praying for some lungs that you all
know what that means. I'm not, but I'm not praying for someone to
die. I'm just praying that Godputs this plan into because everything's already in
(14:54):
motion, is how I have tolook at it, and that you put
you in the right place at theright right time for the right one.
But I'm not praying for someone topass on. I'm just praying that I'm
in the right place at the righttime. But again, that's again,
that's where it just gets really heavyand hard. Yeah, but then that
(15:16):
in the way is their path,I feel like, And then I mean,
there's nothing you can do to stoptheir path, right, So then
you a path would be to receivethem and should be quite full length flad
and not be so burdened because that'salready their path. Yeah. Well,
(15:37):
exactly. Yeah, are you anorgan donor? She's like, no,
no, oh I am. It'son your license. You can pick it.
Well, but I think like whenI think about like I see what
you're saying. But if I thinkabout why I say yes to do that,
like it doesn't do anything for menot to because I know you can
donate everything, let the skin likeeverything. So I feel like it's so
(16:03):
neat, like I think it's cool, like to you seven seven people,
like one person can save up toseven people. I mean like face trans
with eyes and skin bones. Yeah, more positive spin Like I think it's
neat, like I think it's socool instead of And I love that you
feel that way because and that's avery selfish self there's that word again,
(16:25):
selfless attitude. Because I some peoplejust either don't want to talk about it,
because I get it. Who wantsto talk about when they die?
And so a lot of people don'tlike to talk about don't like you know,
organ donor. But it's a conversationthat you should have and it's an
easy one. You just say,like so you just click it on your
(16:47):
check it on the box and thendon't worry about it. But the fact
that you did decide you, Imean, unknowingly could be saving seven people
and you're on heaven hanging out andyou're cool. So I think it's so
neat. I'm like, well,why that's so cool. I love that
you feel that way. And Ilike to say that I am a testament
to choosing, you know, Yes, because because of the selfless act that
(17:08):
they did, I've gotten to havefive more years with my children. I've
got to be a wife and Imean a mother and live this life that
I love so much. And Iam so thankful for that. Yeah.
And you did you get to meetthe people the second No, so I
did meet the first the beauty thebeautiful family the first and the second time
(17:30):
around. So how it works isyou write a letter to transplant alliance and
then the person, like the familyof the person that donated their organs,
will write a letter and say,hey, we would like to meet who
received our loved one's organs, AndI will write a letter I would like
to meet the family who donated,you know, had the loss, you
know, lost their loved one,and then the alliance will bring you all
(17:52):
together. So it worked out forthe first time because I wrote a letter,
and she wrote a letter and wemet and it was beautiful. And
then but the second time around,because it was so hard when I lost
her daughter's lungs, I just didn't. I don't. It was so hard
because I feel like she felt likeshe probably lost her daughter alive again.
(18:15):
So I never wrote a letter,but they never did either for the second
because I would have been contacted andthey would have said and I think if
someone had said, hey, theywanted meet you, I would do it.
It is just really hard emotional,very emotionally, because you like,
I will never be able to beworthy of the person that I took.
And again I did not take theirplace, but the person that gave me
(18:37):
the gift. So they lost theloved one and I will never be them
and I'm not worthy of enough tobe them and I would. I can't
take their place, and so it'sjust not enough, right, So this
family, I just feel like they'velost a loved one and if but you
gave it a really good shot,yeah felt Yeah. Yeah, it's hard,
(19:02):
so hard. What what made yourbody reject those lungs? That's about
it, quickly, right, Yeah, that is I think my body just
was like strong and it was justlike, what are these and just said
no, you know, like justdidn't want them. I don't you don't
ever really know. It can be. I mean, there's different types of
rejections, so it could be that, you know, there's donor antibodies that
(19:26):
pop up and cause rejection, andthere can be chronic allographed rejection, which
is what she's experiencing now, whichit's called chronic allographed rejection, and it's
basically it's yeah clad and it's basicallyyour your airways just tighten up. So
just being attacked, I guess likemy cells are being attacked, right,
it causes your airways just the inflammationand swell and basically close up and then
(19:52):
they scar. Yeah, but Ithink the photo Freese is that I'm doing
now that you know works to screamon my white blood cells. I I
think that's what's giving me kind ofstable. And I swear prayers. I
really do think the only reason whyI'm able to be full functioning right now
I want thirty percent is prayer.I mean, I just there's the only
way I can explain it, becauseI mean, yeah, I just feel
(20:15):
I'm carrying me. It's the coolestfeeling. How many medications do you have
to take every day? I meana good twenty five pills in the morning
and twenty five at night. Yeah, I don't even Yeah, and I
can do it all at once.I've been I'm at pill popper since I
was little, Like I remember beingat CF camp, and well she can't
have CF camp anymore, which isreally funny because like CF kids. I
(20:38):
don't know if you ever saw themovie six Feet Apart. So my youngest
daughter told me about this that whenwe talked about you, she said,
do you know that they can't bearound each other? And I go,
I've never had no idea. Yeah, so we again it's that whole like
we get a virus like this isjust one. We have six fibrosis.
This is even before transplant. Weget a virus and it's called sapacia,
(21:00):
and we cannot fight that virus andwe will have it forever. But the
only people I could get it fromis another C effort because she can't fight
or he can't fight that disease.So we were all hanging out at CF
camp together, like had no cluethat sepatia was that dangerous or I don't
know I'm sure the doctors got smartand figured it out because obviously camp was
canceled. But anyways, so yeah, once we get sick, you know,
(21:25):
with that, that's that's it.And it's really you can't have a
transplant once you have sepatia. Yeah, and so a lot of people are
always just like, oh, soyou know you had to endure so much
with sixty fibrosis, why don't youjust get a lung transplant, you know,
and like once you can have one, And well, my story is
exactly why, because rejection isn't thefull proof like cure. Really, the
(21:45):
true cure is curing six fibrosis,which they are so close. Hi.
I'm Olivia Bully. I'm one ofthe gossip girls here at Tupash Podcasts.
You can find me on Instagram atLiv's World and if you mean me,
I'll be crying in my Bentley Marcella, co host of the Tupash podcast.
You can find me on all socialmedia platforms Marcellainary. You can also find
(22:07):
me on TikTok Marcellinary seven and Isay whatever the fuck I want. Yeah,
that's my name is cruz Kofer.You can find me on Instagram and
that's pretty much it, and let'sdo some tequila together on the next show.
If you enjoy listening to our show, please follow tupash podcast on all
(22:30):
social media handles and tell all yourfamily and friends about it. And tupash
podcast is on Instagram, TikTok,YouTube, Facebook, and Twitter. Also,
don't hesitate to leave us a review, comments, feedback, or ask
us any questions and follow me onmy personal social media on Instagram at Gabby
dot Talk and Facebook at Gabrielle KindliGilmore and I Have No Secret. Thank
(22:56):
you for listening here
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 withmy beautiful co host Marsella, my daughter.
Hello, I'm Marcella. I'm adancer, choreographer, model and designer
(00:22):
for Tupash and I say whatever theI want. My name is Cruz.
I am a stylist. I alsoown the Society Salon in the Design District
and I am a short, littleMexican with a big personality. What will
they say next? Welcome to theTupash Podcast. Still have some me?
(00:49):
Well, that's I mean, youjust told us something. I think that's
super important to know that you actuallylost your hair after your second transplant.
How much of it? I stilllike. It was just it just was
so thin to the point where Imean I was like, you you'll see
picture, you can see pictures.But so I think it's well the shock
(01:11):
your body goes through. So itwas just so thin. And but then
like I said, I was like, I want hair extensions. And then
I was like and I want toget my lashes done and I want to
get my nails done because hey,I'm not dead yet, you know.
So yeah, we but it wasI think the medicine tackle limus, the
(01:33):
rejection meds. I think I kindof put your body in a shock too,
so you do lose hair. Butthen I you know, that's the
thing. I grew it all.It took a while, but I grew
it all back. But then Imight lose it again. I don't know.
I didn't lose it on my firsttime. I think I just lost
it on my second because I wasdying the fact that you were a nice
(01:53):
yeah days. Yeah. I didn'teat for forty days, I think,
and I didn't yeah, and shewas she had a draak, so she
was yeah for gosh, like fiveweeks before she could yeah eat, And
I remember like you weren't there,and I was by myself, and they
were like, you can eat now, because I think they were worried about
(02:15):
like if you swallow asperating is thatwhat it was, babe? So I
finally proved them that I could swallow, and I was like, oh my
gosh, I'm gonna eat. Andhe wasn't there, So I just ordered
all this Chinese food, and Iwas like so excited and I took one
bite and I couldn't taste it becauseall I mean I could it all tasted
so bad, like I had cranberryjuice, which I love, and like
(02:38):
a sprite. I mean, Iwas all about to just like dig in.
And I guess after forty days likenot being able to eat, I
don't know if your taste was likego take a nap for a while,
or the medicines and just the surgery. So it took a long time to
get my taste back too. Soit was just like, really, I'm
tastes different. Do you like thingsdifferently? Well? No, but I
(03:00):
will say this, this is aweird CF thing. I have really bad
CF sinuses, and so I don'thave a sense of smell. I know,
right, that's like yeah, soI actually eat more for texture.
I mean I do taste, likeso your tongue can taste salt, sour
and sweet bitter, but when thenyou add a smell to it, apparently
(03:22):
it intensifies it like by a thousand. So I have like five tastes and
then I eat for texture. LikeScott makes fun of me because I'll be
like that tastes crunchy or that youknow I don't or I can't taste that
at all. So taste has alwaysbeen weird anyways. But I was just
like after forty days, like thinkingI was about to eat and yeah,
that's a little that kind of broughtme. I was like to be mad
(03:46):
because I just wanted to eat.Yeah, but again because I had to
prove so because again they I mean, they're you know, they're all up
in there with their nerves and cuttingeverything and so it makes it hard to
swallow. And so they were soworried that if I ate and swallowed and
the food went to my lungs,it could give you the moment. So
I had to prove that I couldswallow. Again. I had to actually
too, It's like I had toprove that I could live on my own.
(04:10):
What is it like physical therapy whereit's opposite occupational therapy. So I
had to prove that I could shavemy legs. So like I'm like literally
like naked or shaving my leg provingthat I can do things function. And
so I had like kind of proveagain like that I can live on my
own. You went to the narrowhospital. So she once they released her
(04:32):
from the transplant, I see youbasically she went to uh the Neurow hospital
because of the stroke. Yeah,so I had to kind of prove like
that I could be on my own, that I could walk up the steps
and like I have, I firsthad to learn how to walk, and
so that was a whole other aspectof it that just had another hurdle.
Yeah, but I always say,like see if it just it's really good
(04:57):
at putting a big mountain in frontof me, and then I just have
to like on anything that I wantwrite anything, children, school, job,
life, just breathing. I mean, it puts a mountain and then
I but I'm really good at climbingit. It just takes a lot longer.
But so what do you have towhen you get the transplant like you
have had it now for five years? Do you have to take the rejection
(05:20):
drugs every day? Yes, veryIt's very important because I mean I went
into a state of rejection because ofviruses and it's a cellular level, but
sometimes you can go into a rejectionbecause your immune system really kicks in.
And so what the immune suppressants do, like the is the the taculmus.
(05:43):
The yeah, the print zone.It it makes my immune I don't have
an immune system like at all.Like I mean, that's why I do.
Like I'll get a cold and youguys would probably get up with this
same cold, and you would haveit for like thirty minutes, so your
body would fight it and you'd befine. Like I mean, to the
point where you know, I'm surethat I have to assume that everyone is
(06:06):
sick. I mean in a way. So I mean, obviously I don't
drink after my kids. I mean, when they come home from school,
they take their shoes off and washtheir hands, and and it's hard because
all I want to do is justhug them and sweeze them. But I
have to be careful because, especiallyright now that they're at school, they're
bringing home lots of germs, andI am in a vulnerable state right now.
(06:28):
So that's part of the balance thedoctors have to figure out. It's
like, how do we suppress herimmune system enough to keep you know,
her body from injecting the lungs,but how do we keep it high enough
to where if she does get acold, that she has a chance of
fighting it. What was COVID,like for you hiding hiding. Yeah,
(06:51):
yeah, we just it was terrifyingjust the But what's interesting is when she
because she evaded it for at leasta year and then she finally got COVID.
We went to Ireland and I gotback and I was I was like,
babe, I don't feel good.And but the thing was, is
(07:15):
I mean because they put I mean, I took the vaccine and because for
me I had to like gether.Yeah, And so honestly I thought it
really well because I think my bodyalready had like knew how to fight it
because of the vaccine. Maybe.And then I also was on what did
I get on? And they tookme straight to the emergency room. Oh
wow, they did monoclonal antibodies,and so they we they just injected her
(07:38):
with those and those help, andthat's when my body had some help fighting
that. But now, like alittle cold, there's no vaccine, there's
no antibodies, so I'm having tofight this cold on my own and my
body barely has any of the immunesystem. And then that's when my lungs
git so attacked. And that's whathappened in January. And then actually just
about a month ago where I've lostmy function to where I am at this
(08:00):
point. There's colin colds. Onewas that virus. Got a second one
yeah, one was influence. Yeah, a total normal cults. Like again,
you guys would get it, you'dbe fine, Like, but my
body is like, oh that likethe flu is like or whatever this thing
is. The virus is just like, oh, this is an easy body.
I want to hang out here.Nothing's fighting me here. Well,
(08:20):
on top of that, they gaveher antibotics that her body didn't like.
So on top of this virus,it's freaking havoc and her lungs. Then
she gets on an antibotic and shehas a reaction to it, and the
reaction is short of brand affects.So I'm like, so I didn't realize
it was the antabotic until but soI'm I met twenty percent at this time,
(08:43):
like, and so that's why wemoved so quickly with Duke, because
I thought we were I thought Iwas declining tremendously really quickly. But when
I got off the antibiotic, Iwas like, wait, I'm starting to
get my lung function back. Andso we realized it was the he realized
it. He figured it out throughso much start that it was the antibiotic
that was actually making me shorter breath. And so once I got off that,
(09:05):
I got back to this thirty percentthat I'm at that I feel actually
pretty stable at. So now Ifeel like I have a little freedom and
a little time to be able towait till September fourth to be evaluated,
and then once I'm evaluated at Duke, I'll be evaluated at Phoenix, And
so you're doing it back to back. Yeah, pretty much. I'm going
to go to Duke from five fifthto the twelfth, and then I think
(09:26):
the eighteenth is what they're thinking.I'll go to Phoenix and they won't do
all the tests because Duke's already donesome of it, but they'll both do
their analysis on what they think.And I mean, at this point,
I don't know because my body isweird and I am very intuned to my
body though, that's the thing,And I think, you know, when
like a lot of CF kids,we kind of reckon. I mean,
(09:48):
I knew right away when I startedlosing my long function, I could feel
it, and so I just Ifeel like, right now, maybe I'm
stable enough. I mean, Imean, it's a lot harder because you're
tired, and it's just harder tobreathe, and it's usually after I eat.
It's really hard because you know,like when you're full, it's just
a little and so I need allthe function I can get. Anyways,
(10:11):
So we'll see. But I'm thinkingmaybe they'll be like, you're not ready
for the table just yet. Let'smonitory. But I think that's a great
place to be. And then I'vedone all the leg work and all the
hard work. So then when itis time, like if I get sick
again, yeah, or like,I will have done all the work.
So then they're just like, comeon down, and I won't be like
(10:33):
the second with Phoenix when I waslike basically near death. She can't be
that sick again, won't transfer.Yeah, So I have to be like
we talked about earlier, is thatperfect balance, Yeah, like that perfect
balance of sick enough to need itbut not sick enough to die on the
table. We'll see. So Ihave another crazy question, but it sounds
(11:00):
like it's there's so many legal andwhatever things that go into who gets lungs?
Can you buy them? Yeah?My friends away they would figure that
out. Yes, No, ohI wouldn't and I wouldn't want to go
down that route. I don't know. Maybe people do, I don't know.
I am I'll trust the system.I'll basically get a number, right,
(11:26):
like they'll evaluate me, and there'sa scale and essentially depending on your
need. Yeah, so they'll putme, they'll put a number right,
and so if you're one on thelist, you need them the most in
that area. And then so whena lung comes in, so when the
one, then a match comes inbecause it has to be a match,
right, it can't just be anylungs. It's got to face size and
(11:48):
all that. Yeah, so theyhave to the lungs have to fit.
You know. If they don't fit, they can trim them a little bit.
But yeah, they actually the lungsthat she has, they actually trend.
They didn't fit perfect. So actuallyI had to trim the lungs a
little bit. But I do Ihate this because I am tiny and so
like if a child did come in, I could have their lungs and that
(12:09):
just like that kills me. Butyeah, so it was just it's the
size and the blood type, bloodtype, and I don't know if they
like, well, what's really interesting, It's funny is there's also like high
risk lungs and so like one timewas it was my these were high risks,
but they had to ask me.So when they found a match,
(12:35):
they have to they have to tellyou if it's a high risk. Remember,
so like on my first pair,they were like, they were like,
these are high risk and I kindof was like, okay, god
if and what it means was theperson that had these lungs or the but
I didn't have these. I didn'tget these lungs. But they were in
prison, so they're they're high risk. And the sense that their lifestyle might
(12:56):
be yeah, like so you weretaking on I get right, Like they
have to tell you that, right, They have to tell you if it's
tyrisk. They don't have to tellyou exactly why they're high risk. But
they said it like he was there. So it can be incarceration or it
could be you know, they havehepatitis. You know, there's several factors
that make them high risk. Idon't think they have to tell you exactly
(13:20):
why. They just have to tellyou that they're high risk, and then
you have to say yes or no. Did we did we come to the
assumption that it was like a jailguy or something, or I don't.
I just remember thinking to the Firs, well, so what had happened was
it's called a dry run. AndI for anyone that has to endure a
transplant, this is a dry runsare hard because they what they mean is
they call you and they're like,hey, we have some lungs for you.
(13:41):
And and they're like, so youget there, you do all the
blood work, and you're about toget these lungs, and then they're like
it's no good, like either thelungs aren't good or they are high risk
or I had a Actually for mydry run, I had a fever.
And you cannot be transplanted with afever because they that you have to you
have to be kind of healthy,which is weird because we're not healthy.
(14:05):
So I but that dry run.So I didn't get the lungs of the
prisoner, I swear, and whichand I remember maybe they do tell you
because I think now that I thinkabout it, the ones you have now
the person hatie. Yeah, Andthen so I had to take pills to
make sure I don't get hepatitis.But at the time, We're like,
we'll take whatever course. But andI don't have hepatitis, but there is
(14:28):
that chance that taking on that DNA. But you just take some pills to
make sure that you don't get it. But yeah, so, I mean,
and that's what's so hard as youSo now going into my third I
hate this part because you know,I'm praying for some lungs that you all
know what that means. I'm not, but I'm not praying for someone to
die. I'm just praying that Godputs this plan into because everything's already in
(14:54):
motion, is how I have tolook at it, and that you put
you in the right place at theright right time for the right one.
But I'm not praying for someone topass on. I'm just praying that I'm
in the right place at the righttime. But again, that's again,
that's where it just gets really heavyand hard. Yeah, but then that
(15:16):
in the way is their path,I feel like, And then I mean,
there's nothing you can do to stoptheir path, right, So then
you a path would be to receivethem and should be quite full length flad
and not be so burdened because that'salready their path. Yeah. Well,
(15:37):
exactly. Yeah, are you anorgan donor? She's like, no,
no, oh I am. It'son your license. You can pick it.
Well, but I think like whenI think about like I see what
you're saying. But if I thinkabout why I say yes to do that,
like it doesn't do anything for menot to because I know you can
donate everything, let the skin likeeverything. So I feel like it's so
(16:03):
neat, like I think it's cool, like to you seven seven people,
like one person can save up toseven people. I mean like face trans
with eyes and skin bones. Yeah, more positive spin Like I think it's
neat, like I think it's socool instead of And I love that you
feel that way because and that's avery selfish self there's that word again,
(16:25):
selfless attitude. Because I some peoplejust either don't want to talk about it,
because I get it. Who wantsto talk about when they die?
And so a lot of people don'tlike to talk about don't like you know,
organ donor. But it's a conversationthat you should have and it's an
easy one. You just say,like so you just click it on your
(16:47):
check it on the box and thendon't worry about it. But the fact
that you did decide you, Imean, unknowingly could be saving seven people
and you're on heaven hanging out andyou're cool. So I think it's so
neat. I'm like, well,why that's so cool. I love that
you feel that way. And Ilike to say that I am a testament
to choosing, you know, Yes, because because of the selfless act that
(17:08):
they did, I've gotten to havefive more years with my children. I've
got to be a wife and Imean a mother and live this life that
I love so much. And Iam so thankful for that. Yeah.
And you did you get to meetthe people the second No, so I
did meet the first the beauty thebeautiful family the first and the second time
(17:30):
around. So how it works isyou write a letter to transplant alliance and
then the person, like the familyof the person that donated their organs,
will write a letter and say,hey, we would like to meet who
received our loved one's organs, AndI will write a letter I would like
to meet the family who donated,you know, had the loss, you
know, lost their loved one,and then the alliance will bring you all
(17:52):
together. So it worked out forthe first time because I wrote a letter,
and she wrote a letter and wemet and it was beautiful. And
then but the second time around,because it was so hard when I lost
her daughter's lungs, I just didn't. I don't. It was so hard
because I feel like she felt likeshe probably lost her daughter alive again.
(18:15):
So I never wrote a letter,but they never did either for the second
because I would have been contacted andthey would have said and I think if
someone had said, hey, theywanted meet you, I would do it.
It is just really hard emotional,very emotionally, because you like,
I will never be able to beworthy of the person that I took.
And again I did not take theirplace, but the person that gave me
(18:37):
the gift. So they lost theloved one and I will never be them
and I'm not worthy of enough tobe them and I would. I can't
take their place, and so it'sjust not enough, right, So this
family, I just feel like they'velost a loved one and if but you
gave it a really good shot,yeah felt Yeah. Yeah, it's hard,
(19:02):
so hard. What what made yourbody reject those lungs? That's about
it, quickly, right, Yeah, that is I think my body just
was like strong and it was justlike, what are these and just said
no, you know, like justdidn't want them. I don't you don't
ever really know. It can be. I mean, there's different types of
rejections, so it could be that, you know, there's donor antibodies that
(19:26):
pop up and cause rejection, andthere can be chronic allographed rejection, which
is what she's experiencing now, whichit's called chronic allographed rejection, and it's
basically it's yeah clad and it's basicallyyour your airways just tighten up. So
just being attacked, I guess likemy cells are being attacked, right,
it causes your airways just the inflammationand swell and basically close up and then
(19:52):
they scar. Yeah, but Ithink the photo Freese is that I'm doing
now that you know works to screamon my white blood cells. I I
think that's what's giving me kind ofstable. And I swear prayers. I
really do think the only reason whyI'm able to be full functioning right now
I want thirty percent is prayer.I mean, I just there's the only
way I can explain it, becauseI mean, yeah, I just feel
(20:15):
I'm carrying me. It's the coolestfeeling. How many medications do you have
to take every day? I meana good twenty five pills in the morning
and twenty five at night. Yeah, I don't even Yeah, and I
can do it all at once.I've been I'm at pill popper since I
was little, Like I remember beingat CF camp, and well she can't
have CF camp anymore, which isreally funny because like CF kids. I
(20:38):
don't know if you ever saw themovie six Feet Apart. So my youngest
daughter told me about this that whenwe talked about you, she said,
do you know that they can't bearound each other? And I go,
I've never had no idea. Yeah, so we again it's that whole like
we get a virus like this isjust one. We have six fibrosis.
This is even before transplant. Weget a virus and it's called sapacia,
(21:00):
and we cannot fight that virus andwe will have it forever. But the
only people I could get it fromis another C effort because she can't fight
or he can't fight that disease.So we were all hanging out at CF
camp together, like had no cluethat sepatia was that dangerous or I don't
know I'm sure the doctors got smartand figured it out because obviously camp was
canceled. But anyways, so yeah, once we get sick, you know,
(21:25):
with that, that's that's it.And it's really you can't have a
transplant once you have sepatia. Yeah, and so a lot of people are
always just like, oh, soyou know you had to endure so much
with sixty fibrosis, why don't youjust get a lung transplant, you know,
and like once you can have one, And well, my story is
exactly why, because rejection isn't thefull proof like cure. Really, the
(21:45):
true cure is curing six fibrosis,which they are so close. Hi.
I'm Olivia Bully. I'm one ofthe gossip girls here at Tupash Podcasts.
You can find me on Instagram atLiv's World and if you mean me,
I'll be crying in my Bentley Marcella, co host of the Tupash podcast.
You can find me on all socialmedia platforms Marcellainary. You can also find
(22:07):
me on TikTok Marcellinary seven and Isay whatever the fuck I want. Yeah,
that's my name is cruz Kofer.You can find me on Instagram and
that's pretty much it, and let'sdo some tequila together on the next show.
If you enjoy listening to our show, please follow tupash podcast on all
(22:30):
social media handles and tell all yourfamily and friends about it. And tupash
podcast is on Instagram, TikTok,YouTube, Facebook, and Twitter. Also,
don't hesitate to leave us a review, comments, feedback, or ask
us any questions and follow me onmy personal social media on Instagram at Gabby
dot Talk and Facebook at Gabrielle KindliGilmore and I Have No Secret. Thank
(22:56):
you for listening here
Popular Podcasts
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
The Breakfast Club
The World's Most Dangerous Morning Show, The Breakfast Club, With DJ Envy, Jess Hilarious, And Charlamagne Tha God!