18:06
TEDMED 2010

Charity Tillemann-Dick: Singing after a double lung transplant

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You'll never sing again, said her doctor. But in a story from the very edge of medical possibility, operatic soprano Charity Tillemann-Dick tells a double story of survival -- of her body, from a double lung transplant, and of her spirit, fueled by an unwavering will to sing. A powerful story from TEDMED 2010.

- Soprano
Charity Tillemann-Dick is a soprano who has appeared on opera and concert stages around the world. Her roles have included Titania in "A Midsummer's Night Dream," Gilda in "Rigoletto" and Violetta in "La Traviata." Full bio

You may not know this,
00:15
but you are celebrating an anniversary with me.
00:17
I'm not married,
00:20
but one year ago today,
00:23
I woke up
00:26
from a month-long coma,
00:28
following a double lung transplant.
00:31
Crazy, I know. Insane.
00:35
Thank you.
00:40
Six years before that,
00:42
I was starting my career
00:45
as an opera singer in Europe,
00:47
when I was diagnosed with
00:49
idiopathic pulmonary hypertension --
00:51
also known as PH.
00:54
It happens when there's a thickening
00:56
in the pulmonary veins,
00:59
making the right side of the heart
01:01
work overtime,
01:03
and causing what I call
01:05
the reverse-Grinch effect.
01:07
My heart was three-and-a-half sizes
01:09
too big.
01:11
Physical activity becomes very difficult
01:14
for people with this condition,
01:16
and usually after two to five years,
01:19
you die.
01:22
I went to see this specialist,
01:24
and she was top-of-the-field
01:26
and told me I had to stop singing.
01:28
She said, "Those high notes are going to kill you."
01:31
While she didn't have any medical evidence
01:34
to back up her claim
01:36
that there was a relationship
01:38
between operatic arias
01:40
and pulmonary hypertension,
01:42
she was absolutely emphatic
01:44
I was singing my own obituary.
01:46
I was very limited by my condition, physically.
01:50
But I was not limited when I sang,
01:53
and as air came up from my lungs,
01:56
through my vocal cords
01:58
and passed my lips as sound,
02:00
it was the closest thing I had ever come
02:03
to transcendence.
02:06
And just because of someone's hunch,
02:10
I wasn't going to give it up.
02:12
Thankfully, I met Reda Girgis,
02:15
who is dry as toast,
02:18
but he and his team at Johns Hopkins
02:20
didn't just want me to survive,
02:23
they wanted me
02:25
to live a meaningful life.
02:27
This meant making trade-offs.
02:30
I come from Colorado.
02:33
It's a mile high,
02:35
and I grew up there with my 10 brothers and sisters
02:37
and two adoring parents.
02:40
Well, the altitude exacerbated my symptoms.
02:42
So I moved to Baltimore to be near my doctors
02:45
and enrolled in a conservatory nearby.
02:47
I couldn't walk as much as I used to,
02:51
so I opted for five-inch heels.
02:53
And I gave up salt,
02:56
I went vegan,
02:58
and I started taking huge doses of
03:00
sildenafil,
03:04
also known as Viagra.
03:06
(Laughter)
03:09
My father and my grandfather were always looking for the newest thing
03:15
in alternative or traditional therapies
03:18
for PH,
03:20
but after six months,
03:22
I couldn't walk up a small hill. I couldn't climb a flight of stairs.
03:24
I could barely stand up
03:27
without feeling like I was going to faint.
03:29
I had a heart catheterization,
03:31
where they measure this internal arterial pulmonary pressure,
03:33
which is supposed to be between 15 and 20.
03:36
Mine was 146.
03:39
I like to do things big,
03:42
and it meant one thing:
03:45
there is a big gun treatment
03:47
for pulmonary hypertension called Flolan,
03:49
and it's not just a drug;
03:52
it's a way of life.
03:54
Doctors insert a catheter into your chest,
03:56
which is attached to a pump
03:59
that weighs about four-and-a-half pounds.
04:01
Every day, 24 hours, that pump is at your side,
04:05
administering medicine
04:08
directly to your heart,
04:10
and it's not
04:13
a particularly preferable
04:15
medicine in many senses.
04:18
This is a list of the side effects:
04:20
if you eat too much salt,
04:23
like a peanut butter and jelly sandwich,
04:26
you'll probably end up in the ICU.
04:28
If you go through a metal detector,
04:31
you'll probably die.
04:33
If you get a bubble in your medicine --
04:35
because you have to mix it every morning --
04:38
and it stays in there,
04:40
you probably die.
04:42
If you run out of medicine, you definitely die.
04:44
No one wants to go on Flolan.
04:47
But when I needed it,
04:49
it was a godsend.
04:52
Within a few days, I could walk again.
04:56
Within a few weeks, I was performing,
04:59
and in a few months,
05:02
I debuted at the Kennedy Center.
05:04
The pump was a little bit problematic when performing,
05:07
so I'd attach it to my inner thigh
05:11
with the help of the girdle and an ACE bandage.
05:13
Literally hundreds of elevator rides
05:16
were spent with me alone
05:18
stuffing the pump into my Spanx,
05:20
hoping the doors wouldn't open unexpectedly.
05:23
And the tubing coming out of my chest
05:28
was a nightmare for costume designers.
05:31
I graduated from graduate school in 2006,
05:34
and I got a fellowship to go back to Europe.
05:37
A few days after arriving,
05:40
I met this wonderful, old conductor
05:42
who started casting me in all of these roles.
05:44
And before long, I was commuting
05:46
between Budapest, Milan
05:48
and Florence.
05:50
Though I was attached
05:52
to this ugly, unwanted,
05:54
high-maintenance, mechanical pet,
05:56
my life was kind of like the happy part in an opera --
05:58
very complicated,
06:01
but in a good way.
06:03
Then in February
06:05
of 2008,
06:08
my grandfather passed away.
06:10
He was a big figure in all of our lives,
06:12
and we loved him very much.
06:14
It certainly didn't prepare me
06:18
for what came next.
06:20
Seven weeks later,
06:22
I got a call from my family.
06:24
My father had been in a catastrophic car accident,
06:27
and he died.
06:31
At 24, my death would have been
06:34
entirely expected.
06:36
But his --
06:39
well, the only way I can articulate how it felt
06:42
was that it precipitated
06:45
my medical decline.
06:47
Against my doctors' and family's wishes,
06:50
I needed to go back for the funeral.
06:53
I had to say goodbye
06:55
in some way, shape or form.
06:57
But soon I was showing signs of right-heart failure,
07:00
and I had to return to sea level,
07:03
doing so knowing
07:05
that I probably would never see my home again.
07:07
I canceled most of my engagements that summer,
07:12
but I had one left in Tel Aviv, so I went.
07:15
After one performance,
07:19
I could barely drag myself
07:21
from the stage to the taxicab.
07:23
I sat down and felt the blood
07:25
rush down from my face,
07:27
and in the heat of the desert,
07:30
I was freezing cold.
07:33
My fingers started turning blue,
07:35
and I was like, "What is going on here?"
07:37
I heard my heart's valves
07:40
snapping open and closed.
07:42
The cab stopped,
07:44
and I pulled my body from it
07:46
feeling each ounce of weight
07:48
as I walked to the elevator.
07:50
I fell through my apartment door
07:52
and crawled to the bathroom
07:54
where I found my problem:
07:56
I had forgotten to mix in
07:58
the most important part of my medicine.
08:00
I was dying,
08:02
and if I didn't mix that stuff up fast,
08:04
I would never leave that apartment alive.
08:06
I started mixing,
08:09
and I felt like everything was going to fall out through one hole or another,
08:11
but I just kept on going.
08:14
Finally, with the last bottle in and the last bubble out,
08:16
I attached the pump to the tubing
08:18
and lay there hoping it would kick in
08:20
soon enough.
08:22
If it didn't, I'd probably see my father
08:25
sooner than I anticipated.
08:27
Thankfully, in a few minutes,
08:29
I saw the signature hive-like rash
08:32
appear on my legs,
08:35
which is a side effect of the medication,
08:37
and I knew I'd be okay.
08:39
We're not big on fear in my family,
08:41
but I was scared.
08:44
I went back to the States,
08:46
anticipating I'd return to Europe,
08:48
but the heart catheterization
08:50
showed that I wasn't going anywhere
08:52
further that a flight-for-life from Johns Hopkins Hospital.
08:55
I performed here and there,
08:57
but as my condition deteriorated,
08:59
so did my voice.
09:01
My doctor wanted me to get on the list for a lung transplant.
09:03
I didn't.
09:06
I had two friends who had recently died
09:08
months after having very challenging surgeries.
09:11
I knew another young man, though, who had PH
09:14
who died while waiting for one.
09:17
I wanted to live.
09:19
I thought stem cells were a good option,
09:21
but they hadn't developed to a point
09:23
where I could take advantage of them yet.
09:25
I officially took a break from singing,
09:29
and I went to the Cleveland Clinic
09:31
to be reevaluated
09:33
for the third time in five years, for transplant.
09:35
I was sitting there kind of unenthusiastically talking
09:38
with the head transplant surgeon,
09:41
and I asked him if I needed a transplant,
09:44
what I could do to prepare.
09:47
He said, "Be happy.
09:49
A happy patient
09:51
is a healthy patient."
09:53
It was like in one verbal swoop
09:56
he had channeled my thoughts
09:58
on life and medicine
10:00
and Confucius.
10:02
I still didn't want a transplant,
10:04
but in a month,
10:07
I was back in the hospital
10:09
with some severely edemic kankles --
10:11
very attractive.
10:14
And it was right-heart failure.
10:17
I finally decided
10:21
it was time to take my doctor's advice.
10:23
It was time for me to go to Cleveland
10:27
and to start the agonizing wait
10:30
for a match.
10:33
But the next morning,
10:35
while I was still in the hospital,
10:37
I got a telephone call.
10:39
It was my doctor in Cleveland,
10:41
Marie Budev.
10:43
And they had lungs.
10:45
It was a match.
10:48
They were from Texas.
10:50
And everybody was really happy for me,
10:52
but me.
10:55
Because, despite their problems,
10:57
I had spent my whole life training my lungs,
10:59
and I was not particularly enthusiastic
11:02
about giving them up.
11:04
I flew to Cleveland,
11:06
and my family rushed there
11:09
in hopes that they would meet me
11:11
and say what we knew
11:13
might be our final goodbye.
11:15
But organs don't wait,
11:17
and I went into surgery
11:20
before I could say goodbye.
11:22
The last thing I remember
11:26
was lying on a white blanket,
11:28
telling my surgeon that I needed to see my mother again,
11:31
and to please try and save my voice.
11:34
I fell into this apocalyptic dream world.
11:37
During the thirteen-and-a-half-hour surgery,
11:41
I flatlined twice,
11:43
40 quarts of blood
11:46
were infused into my body.
11:49
And in my surgeon's 20-year career,
11:51
he said it was among the most difficult transplants
11:54
that he's ever performed.
11:57
They left my chest open for two weeks.
12:00
You could see my over-sized heart
12:03
beating inside of it.
12:06
I was on a dozen machines
12:08
that were keeping me alive.
12:10
An infection ravaged my skin.
12:12
I had hoped my voice would be saved,
12:20
but my doctors knew
12:23
that the breathing tubes going down my throat
12:25
might have already destroyed it.
12:27
If they stayed in, there was no way I would ever sing again.
12:29
So my doctor got the ENT,
12:32
the top guy at the clinic, to come down
12:35
and give me surgery
12:38
to move the tubes around my voice box.
12:40
He said it would kill me.
12:44
So my own surgeon performed the procedure
12:46
in a last-ditch attempt to save my voice.
12:48
Though my mom couldn't say goodbye to me
12:51
before the surgery,
12:53
she didn't leave my side
12:55
in the months of recovery that followed.
12:58
And if you want an example
13:01
of perseverance,
13:03
grit and strength
13:05
in a beautiful, little package,
13:07
it is her.
13:10
One year ago
13:15
to this very day,
13:17
I woke up.
13:20
I was 95 lbs.
13:22
There were a dozen tubes
13:24
coming in and out of my body.
13:26
I couldn't walk, I couldn't talk,
13:28
I couldn't eat, I couldn't move,
13:30
I certainly couldn't sing,
13:32
I couldn't even breathe,
13:34
but when I looked up
13:37
and I saw my mother,
13:40
I couldn't help but smile.
13:43
Whether by a Mack truck
13:47
or by heart failure
13:50
or faulty lungs,
13:52
death happens.
13:54
But life isn't really just about avoiding death, is it?
13:56
It's about living.
14:00
Medical conditions don't negate the human condition.
14:03
And when people are allowed
14:07
to pursue their passions,
14:09
doctors will find they have better,
14:11
happier and healthier patients.
14:13
My parents were totally stressed out
14:15
about me going and auditioning
14:18
and traveling and performing all over the place,
14:20
but they knew that it was much better for me to do that
14:23
than be preoccupied with my own mortality all of the time.
14:25
And I'm so grateful they did.
14:29
This past summer, when I was running and singing
14:31
and dancing and playing with my nieces and my nephews
14:34
and my brothers and my sisters and my mother and my grandmother
14:37
in the Colorado Rockies,
14:40
I couldn't help but think of that doctor
14:42
who told me that I couldn't sing.
14:44
And I wanted to tell her,
14:47
and I want to tell you,
14:49
we need to stop letting disease
14:52
divorce us from our dreams.
14:55
When we do,
14:58
we will find that patients
15:00
don't just survive;
15:02
we thrive.
15:05
And some of us
15:08
might even sing.
15:10
(Applause)
15:13
[Singing: French]
15:17
Thank you.
17:37
(Applause)
17:39
Thank you.
17:45
And I'd like to thank my pianist, Monica Lee.
17:47
(Applause)
17:50
Thank you so much.
17:55
Thank you.
17:57

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About the Speaker:

Charity Tillemann-Dick - Soprano
Charity Tillemann-Dick is a soprano who has appeared on opera and concert stages around the world. Her roles have included Titania in "A Midsummer's Night Dream," Gilda in "Rigoletto" and Violetta in "La Traviata."

Why you should listen

Charity Sunshine Tillemann-Dick is an American-born soprano. She has performed across the United States, Europe, and Asia in venues as diverse as The Kennedy Center in Washington, DC; Severance Hall in Cleveland, Ohio; Il Giardino Di Boboli in Florence, Italy; The National Symphony Hall in Budapest, Hungary; The Tel Aviv Opera House in Israel; and the American Embassy in Beijing, China. She studied music at the Peabody Conservatory at Johns Hopkins University and the Liszt Academy of Music in Budapest.

She has collaborated and performed with noted conductors and musicians Bruno Rigacci, Joella Jones, Marvin Hamlisch, Bono, Zoltán Kocsis, Joan Dornemann, Eva Marton, and former Secretary of State Condoleeza Rice. Some of her operatic roles have included Titania in A Midsummer's Night Dream, Gilda in Rigoletto and Violetta in La Traviata. She has performed for presidents, prime ministers, members of Congress, and world dignitaries. Her performances have been broadcast around the world on the BBC, IRA, Bartok Radio, MTV, PBS and NPR.

Tillemann-Dick has served as the national spokesperson for the Pulmonary Hypertension Association, working to raise awareness, increase federal research funding, expand stem cell research, and promote preventative and alternative medicine.

 

More profile about the speaker
Charity Tillemann-Dick | Speaker | TED.com