November 21, 2022 • 28 mins
Diagnosed at a young age, Antoinette has dealt with Sickle Cell all her life. It’s not until she’s older that she realizes her Sickle Cell is unlike any case her doctor has seen before. With deliberating symptoms and multiple crises, Antoinette turns to her doctor for a life changing diagnosis.
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****** SPOILER ALERT BELOW ******
To find out more information on Sickle Cell disease visit the Sickle Cell Disease Association of America at sicklecelldisease.org.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:04):
There are times where you feel like, oh God, you
want to die, just if we put out your misery
because the pain is so bad. We were encountering this
for the first time when we were working up Miss
Antoinette's case. She doesn't want people to know or see
her in that vulnerable state. The patients might be wellnest minute,
(00:26):
but the next minute they are an organizing pain which,
if not treated in a timely fashion, could escalate nading hospitalization.
In the back of your mind, at least for me,
every day when you wake up, you know, you like,
thank goodness, I'm not in pain. How terrifying would it
(00:49):
be to fight an unknown enemy, one you didn't recognize
and didn't see coming. What if that enemy was coming
from within a disease even doctors couldn't identify. Nearly half
of all Americans suffer from some chronic illness, and many
struggle for an accurate diagnosis. These are their stories. I'm
(01:16):
Lauren Bright, the checko, and this is symptomatic. Antoinette Elcock
would be the first person to tell you it takes
(01:38):
a bit of time to get her to put her
guard down and open up to people. That is, unless
you're talking about Soca music or West Indian food. Some
of the joke sauces can be extremely saucy, so sometimes
it depends on the brand, like the ones that come
directly from the Caribbean like less A Jamaic or whatever
the case may be. There used to spice. I need
(01:59):
a arrested be for jerk chicken because I've tried to
make it four times and the first time I made
it way too spicy. I'll get you an email and I'll,
you know, think it played by play, like how do
you season it? You know you do it the night
before lighting up at the opportunity to share her jerk
(02:20):
chicken recipe, Antoinette can often take a moment to open
up when you first meet her. As her best friend
Anicia Daily explains, she's very much like a consistent person.
She's loyal. She definitely has your back, like she'll eventually
warm up to you when she meet you a couple
other times, but um, don't take your personal Ansia and
(02:43):
Antoinette have known each other for over twenty five years,
becoming friends back in elementary school. When they were young,
Antoinette faced many moments with her peers that would reshape
how she saw the world and how she felt the
world saw her moments that made aunt when I feel
embarrassed about having sickle cell disease. Sickle cell effects more
(03:05):
than one hundred thousand people in the US alone and
lowers one's life expectancy from seventy eight to fifty four years.
It's a disease that Antoinette has been battling her entire life.
I don't tell people right off because when I was
in elementary school about eight nine years old, I had
(03:27):
got sick and I missed a lot of school. So
when I came back, you know, they was like, okay,
why were you out, So me being a kid and
thinking these are my friends, I was just like, you know,
I have this thing called sickle song. The next day,
when we came to school, I noticed that the friends
that I used to hang out with it was very distant.
(03:49):
So apparently one of the girls went home and told
her mom like, oh you know, mom, I have this.
Go to my class. One of my friends, her name
is in Swine, and she had sickle song. To my understanding,
the mother was very uninformed because she's like, oh, well,
we can't be a friend anymore because you have sickle
(04:09):
cell and we don't want to catch it. I can't
imagine how traumatic that must have been for you in
elementary school to be honest about your what you're dealing
with in terms of a health challenge, and having kids
treat you as if you're contagious. So from that, I
(04:32):
hesitated a lot, a lot to tell people that I
have su so and I even have boyfriends that we dated,
and to this day they don't know. Sickle cell caused
down Toinette considerable pain and torment, the complications of oregon
damage from this disease, and on top of everything else,
(04:54):
feeling excluded and embarrassed or all she knew, But it
would take a long time for Antoinette to understand and
vocalize that there might be more to her experience than
simply sickle cell. Taking a step back, what is sickle
cell and how does it manifest itself in people? Sickle
(05:15):
cell disease is an inherited red blood disorder which is
characterized by chronic anemia, unpredictable episodes of pain and damage
to the internal organs that begin in early childhood, and
it leads to altered functioning, poor quality of life for
patients and early mortality. This is in a nutshell about
(05:35):
cickle cell disease. That's Dr John Mattu, Antoinette's doctor and
the director of the adult sickle cell program at King's
County Hospital in Brooklyn. He's been seeing Antoinette for almost
a decade now and fully understands her illness. Their relationship
would become integral to Antoinette learning to manage her symptoms.
(05:56):
These times where you could have pain in one place,
but it's times where as you linger and as it
goes on, it's moving from your backs and your arms
and your legs, you know, and then full on crisis.
So crisis basically is debilitating pain for a patient with
(06:17):
sickle cell disease. It is quite unpredictable. The patients might
be wellnest minute, but the next minute they are an
orgonizing pain, which if not treated in a timely fashion,
could escalate needing hospitalization. The sickle cell is detected by
a blood test that is part of a routine newborn screening.
Being faced with the complications of sickle cell from birth,
(06:40):
Antoinette was not expected to live long. In fact, her
initial doctor has painted a very grim picture for Antoinette
and her parents the doctor turns to my mom and
was like, oh, woll enjoy her now while you can,
because the life expectancy. If she lives to see five
years old, say thank god. So then when I turned five,
(07:02):
they're like, okay, well if she lives to seats in,
say thank god. Then it was like, oh maybe when
she's eighteen. Every year were telling this lady that John
is going to die. At this age. I can't even
imagine how difficult that must have been for your mom
to navigate. I mean, thankfully your mom had a medical
(07:25):
profession background. As a nurse practitioner, Antoinette's mom was very
aware of the hardships and complications associated with sickle cell
but unaware she carried the sickle cell trait until Antoinette
was born. Her mother couldn't have imagined the particular complications
her own daughter would face as a child. Growing up,
(07:46):
Antoinette was often in and out of the hospital battling
her sickle cell crises, and many times had to bear
that burden alone. Mama was a single mom, so even
with me being the hospital, you know, there's some people
where they can take time off of where she couldn't
do that. When you're younger, like I don't have nobody
(08:07):
to advocate for me because my mom is not here
at the time. These people have to make decisions for me.
So even when you're young, you're telling them you're in
pain before they even bring it to you. In pediatrics,
like they question are you sure you're in me? Those
were the first glimpses Antoinette had of the struggle to
(08:27):
receive proper care, a trend that would continue, but the
exception to that in Antoinette's cases. Dr Mattu when he
started seeing Antoinette in two thousand thirteen, he noticed there
was something different about her case. So Anternet actually was
initially thought to have a variant of sickle cell disease
(08:48):
called SC, where somebody inherits THEES or the sickle gene
from one parent and a C gene, which is another
type of human globin from another parent, and that's not
a normal type of monk globin. In and on It's case,
she was suffering from complications of sickle cell disease which
were not as expected for somebody with SC. So we
(09:11):
noticed that uniqueness in her disease and we thought that
we should look further. Dr Mattou's approach to care considered
the person behind the disease, and that is exactly why
Antoinette has always appreciated going to him for care and
was able to open up to him and alleviate some
of the shame she had been carrying. But something still
(09:32):
wasn't quite right. The crisis and visits to the hospital
were too recurrent for it to be just the diagnosed
sickle cell. Very frequent hospitalizations. She needed stronger pain medications
to control her pain, which was quite out of the
ordinary for somebody with the type which we initially thought
she was having, which is the SC type which I
(09:55):
mentioned earlier. That type is supposed to be slightly less severe,
so thinking that she has SC, we were treating her,
and then we saw that her presentation and the manifestations
of her disease were most severe in terms of the
frequency and the severity of the pain crisis. There are
times where you feel like, oh God, you want to
(10:18):
die just if we put out your misery because the
pain is so bad. On top of the social exclusion
and judgment, she has to constantly deal with sickle cell crises,
which have caused her to spend a lot of time
in the hospital, missing everyday events, and even making it
hard for her to hold down a job. At times.
(10:39):
Many patients with sickle cell disease have problems affecting the
day to day life. They are unable to keep their job,
or they are unable to finish their education. Because sickle
cell disease causes pain crisis, they end up in hospital
and they lose valuable time off work or school, and
this really impacts not only the life but also the
(11:01):
life of the families which they support, their children, their parents.
If they're supporting them so really sickle cell disease, we
would consider it as a social problem. Therefore, our relationship
with patients including Internet is not just in a formal
level in a doctor patient relationship level, but also more
personal actually talking to them a little bit about how
(11:24):
they're facing life's challenges, how they are actually able to
cope with the disease. Dr Mattu has always taken antinette
symptoms seriously, haven't taken the time and effort to truly
listen to and understand her. That wasn't always the case though,
through her sickle cell journey, during which she came across
(11:44):
many doctors who were immediately skeptical of or didn't believe
her pain. There's another stigma that they have, and I'm
sure the selvations will tell you when you go in
and I hear this a lot. The doctors come or
then they're just come and the first thing, you know,
they will look on the chart or look at the
meds that I'm not toket and they'll be like, oh,
(12:05):
you have sickle cell. Yes, I have single cell. Oh well,
you don't look like you have single cell, Like, you
don't look like a sickler. And I've got that a lot.
I'm like, what does a sickler look like? I don't understand, Like,
we don't walk around it stamped on our forehead. You
understand what I'm saying, Like, don't stereotype us when you're
telling me, oh, well, you don't look like a sickler.
(12:27):
What are you trying to imply? I don't have single cell,
so therefore I don't need the medication that I'm getting.
Does that make sense? It's not the disease that you
can see. So how does someone look like because she
looks put together? Like that's crazy. They have this thing,
this term call frequent flyer, meaning you're in the emergency
(12:49):
room every other day. So over her the doctor talking
and they were like, oh, whoa, she's not a frequent
flyer inquiring about me. We're gonna give her this medication
because when you're in pain more than like the it
helped us better when we get a shower, I v
and to me, when they give you like pills or
(13:11):
like for somebody that's in their mind is always there.
So he's like, you know, we'll give this one pills
because they are frequent fired. Oh, that's so unfair to
be very if you're in pain. You're in pain, and
I'm just like, that's also like a really good thing
that I'm not there with her when that happens, because
(13:33):
I don't. I would, I would play, I would lose
my ship, add one more thing into the pile of
social judgment and the pain from the actual symptoms having
to advocate and push to get the proper treatment you need.
This mistreatment of sickle cell patients in the medical industry
(13:53):
is sadly pretty commonplace, so much so that Dr Matto
brought it up unprompted that as so many insidious aspects
of the disease, and first and foremost is the social
aspects which I mentioned. Another thing is about misconceptions about
sickle cell disease. Even among health professionals. There are lots
of misconceptions about sickle cell disease. Our patients with sickle
(14:14):
cell disease have an increase in their health care usage.
They often presenter the emergency room or they have to
come to their doctor actually for treatment of their pain.
Crisis patients are often in the emergency department and are
often admitted as in patience in the hospital, and many
times that pain symptoms are not taken seriously and they
are not treated adequately by health care professionals. It seemed
(14:35):
Antoinette was never enough, not appearing sick enough to be
treated for her sickle cell yet not well enough to
avoid judgments based on misconceptions about her conditions. And if
no one was there to take her symptoms seriously, then
how could she expect anything to change. Her symptoms continued
to worsen in their intensity and frequency, one crisis so
(14:58):
severe that it stopped causing a miscarriage. That's another thing
too that I guess that made me strong, because it
was one day I was coming from work and I
felt like a crisis was coming on, like my shoulders
and stuff was herring, But in my mind, I'm just
trying to get home. Then my stomach started really hurting,
like my stomach cursed. My stomach cursition be happening because
(15:19):
I'm pregnant and I'm standing at the corner of the
street to cross the street, and I'm just standing there
be over. Nobody stopped, nothing, nothing, nothing. When I got
home and you know, I pulled down my clothes, that's
when everything just blew. I never took the time to
(15:40):
really process that. I went to work the next day.
I didn't go to them and just see room anything. Well,
when I went to my g y and I told
him what happened, and he was just like, uh, it's
to be expected. What's your sickle cell? And by him
saying that, I was just like, I'm not even gonna
make a big deal out of this because with the
way he responded, like do the single sell? Just try
(16:03):
it again? You know having single soon When you talk
to like doctors and stuff like that, they make it
seem like the things that we go through, we should
be used to it because we have cigle sal and
it comes with the tempritory. Antonina, I am so sorry,
it's okay, thank you, No, I mean, I'm I'm so
(16:27):
sorry that you've been taught that you're just lucky to
be alive. We'll be right back with Symptomatic, a Medical
Mystery Podcast. Now back to Symptomatic, a Medical Mystery Podcast.
(16:55):
It's hard to process brushing off a miscarriage or something
to just deal with as an ex acted consequence of
sickle cell. But luckily Dr Mattu wasn't brushing off any
of her experiences. With each scare, he seemed to be
getting a better idea of what was really at work.
Then Antoinette had a very scary crisis, which ended up
(17:16):
providing the final clue for Dr Mattu to give a
proper diagnosis. One day, I woke up and I couldn't see.
Everything was a blur. I couldn't say anything. It's like
a blood blood blood blur. And I'm the type of person,
as I told you before. I tried to rough it out,
and it was like the third day and I still
(17:38):
was not say like, I couldn't go outside because I
couldn't say so. One of my associates, she's like, you
need to go to the castle. This is not safe.
So I went to the doctor. When they looked in
my eye, they're like, oh, you have a lot of
blood in your eyes, a lot of blood leaking. When
they looked at it, they're like, it's not something more
(18:00):
was wrong. It was late in the evening she called
me saying that she had suddenly lost vision. I was
to rush to the emergency room to get diagnosed, and
we discovered that the eye doctors had seen her in fact,
and they had diagnosed that she had damage to the
inside of her eyes. That right, enough, and that's something
which we don't see. So the issues with her eyesight
(18:23):
became a red flag and an aha moment for you. Yes,
and in fact, she also had a lot of pain crisis,
which was also not fitting in very well with what
we thought she initially had. The frequency and severity of
Antoinette's crises always seemed out of place to Dr Matto,
But now the effects on her eyesight were the final
(18:45):
indicator that this wasn't sickle cell like he'd seen it before.
So we noticed that uniqueness in her disease and we
thought that we should look further. So we have a
specialized test called high performance like with chromatography and short
as HPLC, which is used to detect those abnormal types
(19:05):
of hemoglobin or variants we call them, which are not
normally captured on the usual test. So the type of
secus I have is called cecus or arab initially thought
to be a prevalent in the Arab countries, which actually
(19:26):
would have made it prevalent only in that area. That's
so interesting because you know, this being your area of expertise,
you mentioned that this is rare. Was this the first
case that you had encountered? Exactly, This is a very
first patient I had encountered. It was like, you know,
oh my god, when I was in medical school, I've
(19:48):
read about you, like in the books. But because of
the the part of the world that we're in, and
never have I ever met or even thought I was
gonna we're can here have a patient with that kind.
So this is a variant which is quite severe. It
(20:09):
produces a variety of complications. It affects many different organs
in the body, and in particular, damage to the inside
of the eyes, which is called retinal Retinal damage is
quite common with this problem. Antonine had finally had a
doctor who got to the root of her issue. She
now had a name and a potential way forward with
(20:30):
treatment for her sickle cell variant. Through all of the procedures, though,
they could only restore partial vision to her left eye.
If I keep both of my always open, I can
see perfectly fine. But with this I can't see nothing.
It's just like a big blur. So they're like, you know,
the cells are too far gone due to the circles. Also,
this is as good as it gets, so it affects
(20:53):
my organs like very rapidly, so rapidly that even a
proper diagnosis for her and and a doctor fully digesting
her symptoms, Antoinette faced the most life threatening crisis yet,
and sadly, the situation was made worse because a separate doctor,
not Dr. Matteo, threw her back into that one size
(21:15):
sickle cell bucket once again. I was probably about seven eight.
I was in the hospital for seven days. So with me,
I told them, before y'all do anything, I don't mind
taking any tests. I don't mind doing anything. But what
you're gonna do is you're gonna tell me your care plan.
(21:36):
So I can say, hold up, this doesn't work for me,
or I did this before and this doesn't work. Can
you please change it? He had an issue with that,
so he made a statement, this is how I treat
also go so patients and I'm not changing it. Y'all
all getting the same thing, no matter what. I don't care.
(21:57):
That was his exact words. That same night, I went
to the bathroom and when I got up to come
out of the bathroom, I couldn't breathe. So lucky thing.
The nurses station when my room was a nurses station
is right across there, and she saw me holding onto
the wall like I guess. She saw it before I
could even get it out. And I had coded code
(22:22):
and means the patient has gone into life threatening cardiac
arrest or is not breathing as an Antoinette's case, and
the CODE team rushes to their side to begin resuscitative procedures.
And when I quoted, they called the team to come
and they did the X rays and to revive me
or whatever. Fine. When he changed me over to hematology
(22:44):
the next morning, I end up quoting again and they're like,
the oxygen level is very low and if that could
be due to the pain or whatever the case may be.
And I end up having a cute chest where one
of my lungs was retaining water. It collapsed. So after
(23:05):
that they rushed me straight to Icy. I mean, it's
very it's very hard to see her like that because,
like I said, she's very solid and she comes across
as a very strong woman. But because of that personality
trait and how people view her, I think that's another
(23:26):
reason why she doesn't want people to know or see
her in that vulnerable state. The first time I saw
her like that, I was like, it was very like.
I don't even know how to explain the feeling. I
was just like, wow, I was icy you for two weeks.
But I said that to say, all of that could
(23:46):
have been prevented if he would have just listened for
what works for me and not be like, oh, this
is how I treat all of you guys. Well, Antoinette
is now being taken care of closely by a doctor
who does listen and now has an individualized treatment regimen
that is working for her. Her crises are happening less
frequently and are less severe than they once were. All
(24:09):
of this is a testament to the fighter that she
is and has been throughout her entire roller coaster with
sickle cells since the day she was born, since the
day doctors told her parents she would be lucky to
live to see the age five. The anternet, like I said,
she's amazing. She's strong and resilient, and she's been fighting
(24:30):
with this her entire life. I know that she's told
me that her like when she was younger, doctors told
her mom that she wouldn't live in for thirty four now,
so's a blessing. So I'm sure, with her strength will
be living together for a very long time. She has
had a remarkable improvement in her condition. Her pain is
(24:54):
much better than what it used to be before. She
has had very few severe pain crisis She has had
very few, for at all, hospital admissions in recent years,
and we do not see any further organ damage in
her case. It's stressful because as a sickler, in the
back of your mind, at least for me, every day
when you wake up, you like, thank goodness, I'm not
(25:15):
in pain, But you always had that in the back
of your mind through a turbulent childhood, dealing with crises,
sometimes alone in a hospital, having to advocate for her
own proper treatment, to being excluded and feeling embarrassed by
her debilitating disease to struggling to understand the severity of
(25:37):
her symptoms. Antoinette went on a heartbreaking journey to get
her diagnosis, but she has a very optimistic view on
where treatments for sickle cell are headed, and has already
seen a lot of progress in the general knowledge about
the disease during her lifetime, in particular from Dr Mattu
and his staff. I'm happy to see that now people
(26:00):
are speaking about it more and we're getting more support,
and people are asking questions and how you guys are
doing this podcast and they have commercials. Back then, you
never saw that they even have children that have suple selves.
And that's what gives me the hope because before no,
I didn't have hope for no cure because it wasn't
(26:20):
me spoken about. It was just sweep under the rug.
But now that it's getting more spotline, that's what gives
me the hope, like maybe one day because we came far.
Both the Antoinette and Anetia will probably agree that Antoinette
has gained much strength and appreciation for life through all
(26:44):
her trials and tribulations. But the one thing they won't
agree on is who has the best jerk chicken recipe?
All right, be honest, who has the better jerk chicken recipe?
Then me? I'm Jamaican. It's Jamaican. It's a Jamaican rest
sup so yeah? Um in swan it Monica ocock and
(27:05):
the type is called sickle cell oh abub. To find
out more information on sickle cell disease, visit the Sickle
Cell Disease Association of America at sickle Cell Disease dot org. Additionally,
King's County Hospital does not endorse any pharmaceutical companies or medications.
(27:26):
Please consult your doctor for any direct health concerns. On
the next episode of Symptomatic, Cam is rapidly losing her
motor skills, being attacked by an unknown and unseen disease.
In a matter of months. She goes from starring on
her high school soccer team to struggling to make it
up the stairs. I think there's something wrong, something is
(27:49):
going on, And there was still that hesitance of like, oh, Cam,
you're just not trying hard enough, so you're placing all
the blame on yourself. Cam bounces between multiple doctors, rushing
to mind an answer to what is taking away her
mobility before she loses control of everything? Symptomatic a Medical
Mystery Podcast is an original podcast from I Heart Radio.
(28:12):
Are shows hosted by me Lauren Bright Pacheco. Executive producers
are Matt Romano and myself. Our EP of post production
is James Foster. Our producers are crra Kaiser and John Irwin.
There are times where you feel like, oh God, you
want to die, just if we put out your misery
because the pain is so bad. We were encountering this
for the first time when we were working up Miss
Antoinette's case. She doesn't want people to know or see
her in that vulnerable state. The patients might be wellnest minute,
(00:26):
but the next minute they are an organizing pain which,
if not treated in a timely fashion, could escalate nading hospitalization.
In the back of your mind, at least for me,
every day when you wake up, you know, you like,
thank goodness, I'm not in pain. How terrifying would it
(00:49):
be to fight an unknown enemy, one you didn't recognize
and didn't see coming. What if that enemy was coming
from within a disease even doctors couldn't identify. Nearly half
of all Americans suffer from some chronic illness, and many
struggle for an accurate diagnosis. These are their stories. I'm
(01:16):
Lauren Bright, the checko, and this is symptomatic. Antoinette Elcock
would be the first person to tell you it takes
(01:38):
a bit of time to get her to put her
guard down and open up to people. That is, unless
you're talking about Soca music or West Indian food. Some
of the joke sauces can be extremely saucy, so sometimes
it depends on the brand, like the ones that come
directly from the Caribbean like less A Jamaic or whatever
the case may be. There used to spice. I need
(01:59):
a arrested be for jerk chicken because I've tried to
make it four times and the first time I made
it way too spicy. I'll get you an email and I'll,
you know, think it played by play, like how do
you season it? You know you do it the night
before lighting up at the opportunity to share her jerk
(02:20):
chicken recipe, Antoinette can often take a moment to open
up when you first meet her. As her best friend
Anicia Daily explains, she's very much like a consistent person.
She's loyal. She definitely has your back, like she'll eventually
warm up to you when she meet you a couple
other times, but um, don't take your personal Ansia and
(02:43):
Antoinette have known each other for over twenty five years,
becoming friends back in elementary school. When they were young,
Antoinette faced many moments with her peers that would reshape
how she saw the world and how she felt the
world saw her moments that made aunt when I feel
embarrassed about having sickle cell disease. Sickle cell effects more
(03:05):
than one hundred thousand people in the US alone and
lowers one's life expectancy from seventy eight to fifty four years.
It's a disease that Antoinette has been battling her entire life.
I don't tell people right off because when I was
in elementary school about eight nine years old, I had
(03:27):
got sick and I missed a lot of school. So
when I came back, you know, they was like, okay,
why were you out, So me being a kid and
thinking these are my friends, I was just like, you know,
I have this thing called sickle song. The next day,
when we came to school, I noticed that the friends
that I used to hang out with it was very distant.
(03:49):
So apparently one of the girls went home and told
her mom like, oh you know, mom, I have this.
Go to my class. One of my friends, her name
is in Swine, and she had sickle song. To my understanding,
the mother was very uninformed because she's like, oh, well,
we can't be a friend anymore because you have sickle
(04:09):
cell and we don't want to catch it. I can't
imagine how traumatic that must have been for you in
elementary school to be honest about your what you're dealing
with in terms of a health challenge, and having kids
treat you as if you're contagious. So from that, I
(04:32):
hesitated a lot, a lot to tell people that I
have su so and I even have boyfriends that we dated,
and to this day they don't know. Sickle cell caused
down Toinette considerable pain and torment, the complications of oregon
damage from this disease, and on top of everything else,
(04:54):
feeling excluded and embarrassed or all she knew, But it
would take a long time for Antoinette to understand and
vocalize that there might be more to her experience than
simply sickle cell. Taking a step back, what is sickle
cell and how does it manifest itself in people? Sickle
(05:15):
cell disease is an inherited red blood disorder which is
characterized by chronic anemia, unpredictable episodes of pain and damage
to the internal organs that begin in early childhood, and
it leads to altered functioning, poor quality of life for
patients and early mortality. This is in a nutshell about
(05:35):
cickle cell disease. That's Dr John Mattu, Antoinette's doctor and
the director of the adult sickle cell program at King's
County Hospital in Brooklyn. He's been seeing Antoinette for almost
a decade now and fully understands her illness. Their relationship
would become integral to Antoinette learning to manage her symptoms.
(05:56):
These times where you could have pain in one place,
but it's times where as you linger and as it
goes on, it's moving from your backs and your arms
and your legs, you know, and then full on crisis.
So crisis basically is debilitating pain for a patient with
(06:17):
sickle cell disease. It is quite unpredictable. The patients might
be wellnest minute, but the next minute they are an
orgonizing pain, which if not treated in a timely fashion,
could escalate needing hospitalization. The sickle cell is detected by
a blood test that is part of a routine newborn screening.
Being faced with the complications of sickle cell from birth,
(06:40):
Antoinette was not expected to live long. In fact, her
initial doctor has painted a very grim picture for Antoinette
and her parents the doctor turns to my mom and
was like, oh, woll enjoy her now while you can,
because the life expectancy. If she lives to see five
years old, say thank god. So then when I turned five,
(07:02):
they're like, okay, well if she lives to seats in,
say thank god. Then it was like, oh maybe when
she's eighteen. Every year were telling this lady that John
is going to die. At this age. I can't even
imagine how difficult that must have been for your mom
to navigate. I mean, thankfully your mom had a medical
(07:25):
profession background. As a nurse practitioner, Antoinette's mom was very
aware of the hardships and complications associated with sickle cell
but unaware she carried the sickle cell trait until Antoinette
was born. Her mother couldn't have imagined the particular complications
her own daughter would face as a child. Growing up,
(07:46):
Antoinette was often in and out of the hospital battling
her sickle cell crises, and many times had to bear
that burden alone. Mama was a single mom, so even
with me being the hospital, you know, there's some people
where they can take time off of where she couldn't
do that. When you're younger, like I don't have nobody
(08:07):
to advocate for me because my mom is not here
at the time. These people have to make decisions for me.
So even when you're young, you're telling them you're in
pain before they even bring it to you. In pediatrics,
like they question are you sure you're in me? Those
were the first glimpses Antoinette had of the struggle to
(08:27):
receive proper care, a trend that would continue, but the
exception to that in Antoinette's cases. Dr Mattu when he
started seeing Antoinette in two thousand thirteen, he noticed there
was something different about her case. So Anternet actually was
initially thought to have a variant of sickle cell disease
(08:48):
called SC, where somebody inherits THEES or the sickle gene
from one parent and a C gene, which is another
type of human globin from another parent, and that's not
a normal type of monk globin. In and on It's case,
she was suffering from complications of sickle cell disease which
were not as expected for somebody with SC. So we
(09:11):
noticed that uniqueness in her disease and we thought that
we should look further. Dr Mattou's approach to care considered
the person behind the disease, and that is exactly why
Antoinette has always appreciated going to him for care and
was able to open up to him and alleviate some
of the shame she had been carrying. But something still
(09:32):
wasn't quite right. The crisis and visits to the hospital
were too recurrent for it to be just the diagnosed
sickle cell. Very frequent hospitalizations. She needed stronger pain medications
to control her pain, which was quite out of the
ordinary for somebody with the type which we initially thought
she was having, which is the SC type which I
(09:55):
mentioned earlier. That type is supposed to be slightly less severe,
so thinking that she has SC, we were treating her,
and then we saw that her presentation and the manifestations
of her disease were most severe in terms of the
frequency and the severity of the pain crisis. There are
times where you feel like, oh God, you want to
(10:18):
die just if we put out your misery because the
pain is so bad. On top of the social exclusion
and judgment, she has to constantly deal with sickle cell crises,
which have caused her to spend a lot of time
in the hospital, missing everyday events, and even making it
hard for her to hold down a job. At times.
(10:39):
Many patients with sickle cell disease have problems affecting the
day to day life. They are unable to keep their job,
or they are unable to finish their education. Because sickle
cell disease causes pain crisis, they end up in hospital
and they lose valuable time off work or school, and
this really impacts not only the life but also the
(11:01):
life of the families which they support, their children, their parents.
If they're supporting them so really sickle cell disease, we
would consider it as a social problem. Therefore, our relationship
with patients including Internet is not just in a formal
level in a doctor patient relationship level, but also more
personal actually talking to them a little bit about how
(11:24):
they're facing life's challenges, how they are actually able to
cope with the disease. Dr Mattu has always taken antinette
symptoms seriously, haven't taken the time and effort to truly
listen to and understand her. That wasn't always the case though,
through her sickle cell journey, during which she came across
(11:44):
many doctors who were immediately skeptical of or didn't believe
her pain. There's another stigma that they have, and I'm
sure the selvations will tell you when you go in
and I hear this a lot. The doctors come or
then they're just come and the first thing, you know,
they will look on the chart or look at the
meds that I'm not toket and they'll be like, oh,
(12:05):
you have sickle cell. Yes, I have single cell. Oh well,
you don't look like you have single cell, Like, you
don't look like a sickler. And I've got that a lot.
I'm like, what does a sickler look like? I don't understand, Like,
we don't walk around it stamped on our forehead. You
understand what I'm saying, Like, don't stereotype us when you're
telling me, oh, well, you don't look like a sickler.
(12:27):
What are you trying to imply? I don't have single cell,
so therefore I don't need the medication that I'm getting.
Does that make sense? It's not the disease that you
can see. So how does someone look like because she
looks put together? Like that's crazy. They have this thing,
this term call frequent flyer, meaning you're in the emergency
(12:49):
room every other day. So over her the doctor talking
and they were like, oh, whoa, she's not a frequent
flyer inquiring about me. We're gonna give her this medication
because when you're in pain more than like the it
helped us better when we get a shower, I v
and to me, when they give you like pills or
(13:11):
like for somebody that's in their mind is always there.
So he's like, you know, we'll give this one pills
because they are frequent fired. Oh, that's so unfair to
be very if you're in pain. You're in pain, and
I'm just like, that's also like a really good thing
that I'm not there with her when that happens, because
(13:33):
I don't. I would, I would play, I would lose
my ship, add one more thing into the pile of
social judgment and the pain from the actual symptoms having
to advocate and push to get the proper treatment you need.
This mistreatment of sickle cell patients in the medical industry
(13:53):
is sadly pretty commonplace, so much so that Dr Matto
brought it up unprompted that as so many insidious aspects
of the disease, and first and foremost is the social
aspects which I mentioned. Another thing is about misconceptions about
sickle cell disease. Even among health professionals. There are lots
of misconceptions about sickle cell disease. Our patients with sickle
(14:14):
cell disease have an increase in their health care usage.
They often presenter the emergency room or they have to
come to their doctor actually for treatment of their pain.
Crisis patients are often in the emergency department and are
often admitted as in patience in the hospital, and many
times that pain symptoms are not taken seriously and they
are not treated adequately by health care professionals. It seemed
(14:35):
Antoinette was never enough, not appearing sick enough to be
treated for her sickle cell yet not well enough to
avoid judgments based on misconceptions about her conditions. And if
no one was there to take her symptoms seriously, then
how could she expect anything to change. Her symptoms continued
to worsen in their intensity and frequency, one crisis so
(14:58):
severe that it stopped causing a miscarriage. That's another thing
too that I guess that made me strong, because it
was one day I was coming from work and I
felt like a crisis was coming on, like my shoulders
and stuff was herring, But in my mind, I'm just
trying to get home. Then my stomach started really hurting,
like my stomach cursed. My stomach cursition be happening because
(15:19):
I'm pregnant and I'm standing at the corner of the
street to cross the street, and I'm just standing there
be over. Nobody stopped, nothing, nothing, nothing. When I got
home and you know, I pulled down my clothes, that's
when everything just blew. I never took the time to
(15:40):
really process that. I went to work the next day.
I didn't go to them and just see room anything. Well,
when I went to my g y and I told
him what happened, and he was just like, uh, it's
to be expected. What's your sickle cell? And by him
saying that, I was just like, I'm not even gonna
make a big deal out of this because with the
way he responded, like do the single sell? Just try
(16:03):
it again? You know having single soon When you talk
to like doctors and stuff like that, they make it
seem like the things that we go through, we should
be used to it because we have cigle sal and
it comes with the tempritory. Antonina, I am so sorry,
it's okay, thank you, No, I mean, I'm I'm so
(16:27):
sorry that you've been taught that you're just lucky to
be alive. We'll be right back with Symptomatic, a Medical
Mystery Podcast. Now back to Symptomatic, a Medical Mystery Podcast.
(16:55):
It's hard to process brushing off a miscarriage or something
to just deal with as an ex acted consequence of
sickle cell. But luckily Dr Mattu wasn't brushing off any
of her experiences. With each scare, he seemed to be
getting a better idea of what was really at work.
Then Antoinette had a very scary crisis, which ended up
(17:16):
providing the final clue for Dr Mattu to give a
proper diagnosis. One day, I woke up and I couldn't see.
Everything was a blur. I couldn't say anything. It's like
a blood blood blood blur. And I'm the type of person,
as I told you before. I tried to rough it out,
and it was like the third day and I still
(17:38):
was not say like, I couldn't go outside because I
couldn't say so. One of my associates, she's like, you
need to go to the castle. This is not safe.
So I went to the doctor. When they looked in
my eye, they're like, oh, you have a lot of
blood in your eyes, a lot of blood leaking. When
they looked at it, they're like, it's not something more
(18:00):
was wrong. It was late in the evening she called
me saying that she had suddenly lost vision. I was
to rush to the emergency room to get diagnosed, and
we discovered that the eye doctors had seen her in fact,
and they had diagnosed that she had damage to the
inside of her eyes. That right, enough, and that's something
which we don't see. So the issues with her eyesight
(18:23):
became a red flag and an aha moment for you. Yes,
and in fact, she also had a lot of pain crisis,
which was also not fitting in very well with what
we thought she initially had. The frequency and severity of
Antoinette's crises always seemed out of place to Dr Matto,
But now the effects on her eyesight were the final
(18:45):
indicator that this wasn't sickle cell like he'd seen it before.
So we noticed that uniqueness in her disease and we
thought that we should look further. So we have a
specialized test called high performance like with chromatography and short
as HPLC, which is used to detect those abnormal types
(19:05):
of hemoglobin or variants we call them, which are not
normally captured on the usual test. So the type of
secus I have is called cecus or arab initially thought
to be a prevalent in the Arab countries, which actually
(19:26):
would have made it prevalent only in that area. That's
so interesting because you know, this being your area of expertise,
you mentioned that this is rare. Was this the first
case that you had encountered? Exactly, This is a very
first patient I had encountered. It was like, you know,
oh my god, when I was in medical school, I've
(19:48):
read about you, like in the books. But because of
the the part of the world that we're in, and
never have I ever met or even thought I was
gonna we're can here have a patient with that kind.
So this is a variant which is quite severe. It
(20:09):
produces a variety of complications. It affects many different organs
in the body, and in particular, damage to the inside
of the eyes, which is called retinal Retinal damage is
quite common with this problem. Antonine had finally had a
doctor who got to the root of her issue. She
now had a name and a potential way forward with
(20:30):
treatment for her sickle cell variant. Through all of the procedures, though,
they could only restore partial vision to her left eye.
If I keep both of my always open, I can
see perfectly fine. But with this I can't see nothing.
It's just like a big blur. So they're like, you know,
the cells are too far gone due to the circles. Also,
this is as good as it gets, so it affects
(20:53):
my organs like very rapidly, so rapidly that even a
proper diagnosis for her and and a doctor fully digesting
her symptoms, Antoinette faced the most life threatening crisis yet,
and sadly, the situation was made worse because a separate doctor,
not Dr. Matteo, threw her back into that one size
(21:15):
sickle cell bucket once again. I was probably about seven eight.
I was in the hospital for seven days. So with me,
I told them, before y'all do anything, I don't mind
taking any tests. I don't mind doing anything. But what
you're gonna do is you're gonna tell me your care plan.
(21:36):
So I can say, hold up, this doesn't work for me,
or I did this before and this doesn't work. Can
you please change it? He had an issue with that,
so he made a statement, this is how I treat
also go so patients and I'm not changing it. Y'all
all getting the same thing, no matter what. I don't care.
(21:57):
That was his exact words. That same night, I went
to the bathroom and when I got up to come
out of the bathroom, I couldn't breathe. So lucky thing.
The nurses station when my room was a nurses station
is right across there, and she saw me holding onto
the wall like I guess. She saw it before I
could even get it out. And I had coded code
(22:22):
and means the patient has gone into life threatening cardiac
arrest or is not breathing as an Antoinette's case, and
the CODE team rushes to their side to begin resuscitative procedures.
And when I quoted, they called the team to come
and they did the X rays and to revive me
or whatever. Fine. When he changed me over to hematology
(22:44):
the next morning, I end up quoting again and they're like,
the oxygen level is very low and if that could
be due to the pain or whatever the case may be.
And I end up having a cute chest where one
of my lungs was retaining water. It collapsed. So after
(23:05):
that they rushed me straight to Icy. I mean, it's
very it's very hard to see her like that because,
like I said, she's very solid and she comes across
as a very strong woman. But because of that personality
trait and how people view her, I think that's another
(23:26):
reason why she doesn't want people to know or see
her in that vulnerable state. The first time I saw
her like that, I was like, it was very like.
I don't even know how to explain the feeling. I
was just like, wow, I was icy you for two weeks.
But I said that to say, all of that could
(23:46):
have been prevented if he would have just listened for
what works for me and not be like, oh, this
is how I treat all of you guys. Well, Antoinette
is now being taken care of closely by a doctor
who does listen and now has an individualized treatment regimen
that is working for her. Her crises are happening less
frequently and are less severe than they once were. All
(24:09):
of this is a testament to the fighter that she
is and has been throughout her entire roller coaster with
sickle cells since the day she was born, since the
day doctors told her parents she would be lucky to
live to see the age five. The anternet, like I said,
she's amazing. She's strong and resilient, and she's been fighting
(24:30):
with this her entire life. I know that she's told
me that her like when she was younger, doctors told
her mom that she wouldn't live in for thirty four now,
so's a blessing. So I'm sure, with her strength will
be living together for a very long time. She has
had a remarkable improvement in her condition. Her pain is
(24:54):
much better than what it used to be before. She
has had very few severe pain crisis She has had
very few, for at all, hospital admissions in recent years,
and we do not see any further organ damage in
her case. It's stressful because as a sickler, in the
back of your mind, at least for me, every day
when you wake up, you like, thank goodness, I'm not
(25:15):
in pain, But you always had that in the back
of your mind through a turbulent childhood, dealing with crises,
sometimes alone in a hospital, having to advocate for her
own proper treatment, to being excluded and feeling embarrassed by
her debilitating disease to struggling to understand the severity of
(25:37):
her symptoms. Antoinette went on a heartbreaking journey to get
her diagnosis, but she has a very optimistic view on
where treatments for sickle cell are headed, and has already
seen a lot of progress in the general knowledge about
the disease during her lifetime, in particular from Dr Mattu
and his staff. I'm happy to see that now people
(26:00):
are speaking about it more and we're getting more support,
and people are asking questions and how you guys are
doing this podcast and they have commercials. Back then, you
never saw that they even have children that have suple selves.
And that's what gives me the hope because before no,
I didn't have hope for no cure because it wasn't
(26:20):
me spoken about. It was just sweep under the rug.
But now that it's getting more spotline, that's what gives
me the hope, like maybe one day because we came far.
Both the Antoinette and Anetia will probably agree that Antoinette
has gained much strength and appreciation for life through all
(26:44):
her trials and tribulations. But the one thing they won't
agree on is who has the best jerk chicken recipe?
All right, be honest, who has the better jerk chicken recipe?
Then me? I'm Jamaican. It's Jamaican. It's a Jamaican rest
sup so yeah? Um in swan it Monica ocock and
(27:05):
the type is called sickle cell oh abub. To find
out more information on sickle cell disease, visit the Sickle
Cell Disease Association of America at sickle Cell Disease dot org. Additionally,
King's County Hospital does not endorse any pharmaceutical companies or medications.
(27:26):
Please consult your doctor for any direct health concerns. On
the next episode of Symptomatic, Cam is rapidly losing her
motor skills, being attacked by an unknown and unseen disease.
In a matter of months. She goes from starring on
her high school soccer team to struggling to make it
up the stairs. I think there's something wrong, something is
(27:49):
going on, And there was still that hesitance of like, oh, Cam,
you're just not trying hard enough, so you're placing all
the blame on yourself. Cam bounces between multiple doctors, rushing
to mind an answer to what is taking away her
mobility before she loses control of everything? Symptomatic a Medical
Mystery Podcast is an original podcast from I Heart Radio.
(28:12):
Are shows hosted by me Lauren Bright Pacheco. Executive producers
are Matt Romano and myself. Our EP of post production
is James Foster. Our producers are crra Kaiser and John Irwin.
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