You may not know this, but you are celebrating an anniversary with me. I'm not married, but one year ago today, I woke up from a month-long coma, following a double lung transplant. Crazy, I know. Insane. Thank you.
Možda to ne znate, ali slavite sa mnom jednu godišnjicu. Nisam udana, no prije točno godinu dana probudila sam se iz jednomjesečne kome nakon dvostruke transplantacije pluća. Ludo, znam. Sumanuto. Hvala.
Six years before that, I was starting my career as an opera singer in Europe, when I was diagnosed with idiopathic pulmonary hypertension -- also known as PH. It happens when there's a thickening in the pulmonary veins, making the right side of the heart work overtime, and causing what I call the reverse-Grinch effect. My heart was three-and-a-half sizes too big. Physical activity becomes very difficult for people with this condition, and usually after two to five years, you die. I went to see this specialist, and she was top-of-the-field and told me I had to stop singing. She said, "Those high notes are going to kill you." While she didn't have any medical evidence to back up her claim that there was a relationship between operatic arias and pulmonary hypertension, she was absolutely emphatic I was singing my own obituary. I was very limited by my condition, physically. But I was not limited when I sang, and as air came up from my lungs, through my vocal cords and passed my lips as sound, it was the closest thing I had ever come to transcendence. And just because of someone's hunch, I wasn't going to give it up.
Šest godina ranije započinjala sam karijeru operne pjevačice u Europi, kada su mi dijagnosticirali idiopatsku plućnu hipertenziju -- poznata kao PH. Javlja se kad postoji zadebljanje u plućnim venama, što desnu stranu srca tjera na prekovremeni rad i uzrokuje ono što nazivam obrnutim Grinchovim efektom. Moje je srce bilo tri i pol puta veće od normalnog. Fizička aktivnost vrlo je otežana osobama s tom bolešću. I obično nakon dvije do pet godina takva osoba umire. Otišla sam specijalistici, najboljoj u struci, koja mi je rekla da moram prestati pjevati. "Te visoke note će vas ubiti", rekla je. Premda nije imala nikakvih medicinskih dokaza za potporu svojoj tvrdnji o povezanosti između opernih arija i plućne hipertenzije, apsolutno je naglašavala da pjevam vlastitu osmrtnicu. Bila sam vrlo ograničena svojim stanjem, fizički. Ali nisam bila ograničena dok sam pjevala. I kako mi je zrak dolazio iz pluća, kroz glasnice i prolazio kroz usnice kao zvuk, bilo je to najbliže što sam se ikad približila transcendenciji. I samo zbog nečijeg predosjećaja nisam imala namjeru odustati.
Thankfully, I met Reda Girgis, who is dry as toast, but he and his team at Johns Hopkins didn't just want me to survive, they wanted me to live a meaningful life. This meant making trade-offs. I come from Colorado. It's a mile high, and I grew up there with my 10 brothers and sisters and two adoring parents. Well, the altitude exacerbated my symptoms. So I moved to Baltimore to be near my doctors and enrolled in a conservatory nearby. I couldn't walk as much as I used to, so I opted for five-inch heels. And I gave up salt, I went vegan, and I started taking huge doses of sildenafil, also known as Viagra.
Srećom, upoznala sam Reda Girgisa, škrtog na riječima i neduhovitog, no on i njegov tim na klinici Johns Hopkins nisu htjeli da tek preživim. Htjeli su da živim ispunjen život. To je značilo činiti ustupke. Potječem iz Kolorada. S velike nadmorske visine, gdje sam odrasla s desetero braće i sestara i dvoje brižnih roditelja. Nadmorska visina pogoršavala je moje simptome pa sam odselila u Baltimore u blizinu liječnika i upisala obližnji konzervatorij. Nisam mogla hodati onoliko koliko sam bila navikla pa sam se odlučila za potpetice od 12 cm. Prestala sam soliti, postala veganka, i počela uzimati ogromne doze -- sildenafila -- poznatog kao Viagra.
(Laughter)
(Smijeh)
My father and my grandfather were always looking for the newest thing in alternative or traditional therapies for PH, but after six months, I couldn't walk up a small hill. I couldn't climb a flight of stairs. I could barely stand up without feeling like I was going to faint. I had a heart catheterization, where they measure this internal arterial pulmonary pressure, which is supposed to be between 15 and 20. Mine was 146. I like to do things big, and it meant one thing: there is a big gun treatment for pulmonary hypertension called Flolan, and it's not just a drug; it's a way of life. Doctors insert a catheter into your chest, which is attached to a pump that weighs about four-and-a-half pounds. Every day, 24 hours, that pump is at your side, administering medicine directly to your heart, and it's not a particularly preferable medicine in many senses. This is a list of the side effects: if you eat too much salt, like a peanut butter and jelly sandwich, you'll probably end up in the ICU. If you go through a metal detector, you'll probably die. If you get a bubble in your medicine -- because you have to mix it every morning -- and it stays in there, you probably die. If you run out of medicine, you definitely die.
Moj otac i djed stalno su tragali za najnovijim otkrićima u alternativnim ili tradicionalnim terapijama za PH, no nakon šest mjeseci nisam se mogla popeti uz omanje brdo, ni stepenicama, jedva da sam mogla stajati a da ne osjećam kao da ću se onesvijestiti. Obavila sam kateterizaciju srca, gdje se mjeri unutarnji plućni arterijski tlak, inače između 15 i 20. Moj je bio 146. Volim velike stvari. A to je značilo jedno: postoji lijek 'velikog kalibra' za plućnu hipertenziju, Flolan. To nije samo lijek, to je način života. Liječnici ti ugrade kateter u grudni koš, spojen s crpkom koja teži nešto više od dva kilograma. Svaki dan, 24 sata dnevno, crpka je uz tebe i ubrizgava lijek izravno u tvoje srce. I sam lijek nije baš nešto poželjan lijek iz više razloga. Evo nuspojava: Unosiš li previše soli, jedeš li sendvič od maslaca od kikirikija i marmelade, vjerojatno ćeš završiti na jedinici intenzivne skrbi. Prođeš li kroz detektor metala, vjerojatno ćeš umrijeti. Pojavi li se mjehurić u lijeku -- jer ga moraš miješati svako jutro -- i mjehurić ostane, vjerojatno ćeš umrijeti. Ostaneš li bez lijeka, sigurno ćeš umrijeti.
No one wants to go on Flolan. But when I needed it, it was a godsend. Within a few days, I could walk again. Within a few weeks, I was performing, and in a few months, I debuted at the Kennedy Center. The pump was a little bit problematic when performing, so I'd attach it to my inner thigh with the help of the girdle and an ACE bandage. Literally hundreds of elevator rides were spent with me alone stuffing the pump into my Spanx, hoping the doors wouldn't open unexpectedly. And the tubing coming out of my chest was a nightmare for costume designers. I graduated from graduate school in 2006, and I got a fellowship to go back to Europe. A few days after arriving, I met this wonderful, old conductor who started casting me in all of these roles. And before long, I was commuting between Budapest, Milan and Florence. Though I was attached to this ugly, unwanted, high-maintenance, mechanical pet, my life was kind of like the happy part in an opera -- very complicated, but in a good way.
Nitko ne želi terapiju Flolanom. No kad mi je trebala, bila je dar s neba. U roku od par dana mogla sam opet hodati. U roku od par tjedna ponovno sam nastupala. A za nekoliko mjeseci debitirala sam u Kennedy Centru. Crpka je bila malo problematična na nastupima pa sam je pričvrstila s unutarnje strane bedra steznikom i elastičnim zavojem. Doslovce stotine puta vozila sam se sama dizalom gurajući crpku u steznik i nadajući se da se vrata neće iznenada otvoriti. A cjevčica koja je virila iz mojih grudi bila je kostimografima noćna mora. Diplomirala sam 2006. i dobila stipendiju za povratak u Europu. Nekoliko dana po dolasku upoznala sam predivnog starog dirigenta koji mi je počeo davati mnoge uloge. I ubrzo zatim putovala sam između Budimpešte, Milana i Firence. Premda sam bila vezana uz tog ružnog, neželjenog, zahtjevnog, mehaničkog kućnog ljubimca, moj je život bio nalik veselom dijelu u operi -- vrlo kompliciran, ali na dobar način.
Then in February of 2008, my grandfather passed away. He was a big figure in all of our lives, and we loved him very much. It certainly didn't prepare me for what came next. Seven weeks later, I got a call from my family. My father had been in a catastrophic car accident, and he died. At 24, my death would have been entirely expected. But his -- well, the only way I can articulate how it felt was that it precipitated my medical decline. Against my doctors' and family's wishes, I needed to go back for the funeral. I had to say goodbye in some way, shape or form. But soon I was showing signs of right-heart failure, and I had to return to sea level, doing so knowing that I probably would never see my home again.
Tada, u veljači 2008. umro je moj djed. Bio je važna osoba u našim životima i silno smo ga voljeli. To me zasigurno nije pripremilo za ono što će uslijediti. Sedam tjedana kasnije, primila sam poziv obitelji. Moj je otac doživio strašnu prometnu nezgodu koju nije preživio. S 24 godine moja bi smrt bila potpuno očekivana. Ali njegova -- jedini način na koji mogu izraziti taj osjećaj je taj da je to ubrzalo pogoršanje mog stanja. Suprotno želji mojih liječnika i obitelji morala sam otići na sprovod. Morala sam se oprostiti na neki način, u nekom obliku. No uskoro su se pokazali znakovi zatajenja desne strane srca i trebala sam se vratiti na razinu mora, a učinivši to znala sam da vjerojatno više nikada neću vidjeti svoj dom.
I canceled most of my engagements that summer, but I had one left in Tel Aviv, so I went. After one performance, I could barely drag myself from the stage to the taxicab. I sat down and felt the blood rush down from my face, and in the heat of the desert, I was freezing cold. My fingers started turning blue, and I was like, "What is going on here?" I heard my heart's valves snapping open and closed. The cab stopped, and I pulled my body from it feeling each ounce of weight as I walked to the elevator. I fell through my apartment door and crawled to the bathroom where I found my problem: I had forgotten to mix in the most important part of my medicine. I was dying, and if I didn't mix that stuff up fast, I would never leave that apartment alive. I started mixing, and I felt like everything was going to fall out through one hole or another, but I just kept on going. Finally, with the last bottle in and the last bubble out, I attached the pump to the tubing and lay there hoping it would kick in soon enough. If it didn't, I'd probably see my father sooner than I anticipated. Thankfully, in a few minutes, I saw the signature hive-like rash appear on my legs, which is a side effect of the medication, and I knew I'd be okay.
Otkazala sam većinu svojih angažmana to ljeto, no imala sam još jedan u Tel Avivu, na koji sam otišla. Nakon jednog nastupa jedva sam se odvukla s pozornice u taksi. Sjela sam i osjetila kako mi krv odlazi iz lica. Usred pustinjske vrućine ja sam se smrzavala. Prsti su mi počeli plaviti i pitala sam se "Što se sad događa?" Čula sam kako mi se srčani zalisci otvaraju i zatvaraju. Taksi se zaustavio, izvukla sam svoje tijelo iz njega osjećajući svaki gram težine i odšetala do dizala. Upala sam kroz vrata apartmana i otpuzala do kupaonice gdje sam ustanovila problem: zaboravila sam umiješati najvažniji sastojak svog lijeka. Umirala sam. Ako brzo ne smiješam tu stvar, iz apartmana više neću izići živa. Počela sam miješati i osjećala kao da će sve propasti kroz jednu rupu ili drugu, ali sam uspjela nastaviti. Naposljetku, s posljednjom bočicom i posljednjim istjeranim mjehurićem spojila sam crpku s cjevčicom i legla nadajući se da će početi dovoljno brzo djelovati. Da nije, vjerojatno bih vidjela svog oca i prije nego što sam mislila. Srećom, za nekoliko minuta vidjela sam prepoznatljiv osip, koprivnjaču na nogama, što je nuspojava lijeka, i znala sam da ću biti dobro.
We're not big on fear in my family, but I was scared. I went back to the States, anticipating I'd return to Europe, but the heart catheterization showed that I wasn't going anywhere further that a flight-for-life from Johns Hopkins Hospital. I performed here and there, but as my condition deteriorated, so did my voice. My doctor wanted me to get on the list for a lung transplant. I didn't. I had two friends who had recently died months after having very challenging surgeries. I knew another young man, though, who had PH who died while waiting for one. I wanted to live. I thought stem cells were a good option, but they hadn't developed to a point where I could take advantage of them yet. I officially took a break from singing, and I went to the Cleveland Clinic to be reevaluated for the third time in five years, for transplant. I was sitting there kind of unenthusiastically talking with the head transplant surgeon, and I asked him if I needed a transplant, what I could do to prepare. He said, "Be happy. A happy patient is a healthy patient." It was like in one verbal swoop he had channeled my thoughts on life and medicine and Confucius. I still didn't want a transplant, but in a month, I was back in the hospital with some severely edemic kankles -- very attractive. And it was right-heart failure.
Nismo baš neki plašljivci u obitelji, no ja sam se bojala. Vratila sam se u SAD, očekujući da ću se vratiti u Europu, ali kateterizacija srca pokazala je da neću stići dalje od hitnog prijevoza helikopterom klinike Johns Hopkins. Povremeno sam nastupala, no moje se stanje pogoršavalo, a i moj glas. Moj me liječnik htio uvrstiti na popis za transplantaciju pluća; ja nisam htjela. Dvoje mojih prijatelja nedavno je umrlo nekoliko mjeseci nakon vrlo zahtjevnih zahvata. Poznavala sam još jednog mladića s PH-om koji je umro čekajući transplantaciju. Htjela sam živjeti. Mislila sam kako su matične stanice dobra opcija, no nisu se razvile do točke da bih ih već mogla koristiti. Službeno sam uzela odmor od pjevanja, potom otišla na kliniku u Clevelandu na ponovnu procjenu transplantacije, treći put u pet godina. Sjedila sam tamo i nimalo oduševljeno razgovarala s glavnim kirurgom za transplantacije te ga upitala: ako trebam transplantaciju, što mogu učiniti da se pripremim. Rekao je, "Budi sretna. Sretan pacijent je zdrav pacijent." Bilo je to poput verbalnog obrušavanja, kanalizirao je moje misli o životu i medicini i Konfucija. I dalje nisam željela transplantaciju, no mjesec dana kasnije vratila sam se u bolnicu s ozbiljno otečenim gležnjevima -- vrlo atraktivno. Bilo je to otkazivanje desne strane srca.
I finally decided it was time to take my doctor's advice. It was time for me to go to Cleveland and to start the agonizing wait for a match. But the next morning, while I was still in the hospital, I got a telephone call. It was my doctor in Cleveland, Marie Budev. And they had lungs. It was a match. They were from Texas. And everybody was really happy for me, but me. Because, despite their problems, I had spent my whole life training my lungs, and I was not particularly enthusiastic about giving them up. I flew to Cleveland, and my family rushed there in hopes that they would meet me and say what we knew might be our final goodbye. But organs don't wait, and I went into surgery before I could say goodbye. The last thing I remember was lying on a white blanket, telling my surgeon that I needed to see my mother again, and to please try and save my voice. I fell into this apocalyptic dream world.
Naposljetku sam odlučila da je vrijeme da prihvatim liječnikov savjet. Bilo je vrijeme da pođem u Cleveland i započnem agoniju čekanja na prikladnog davatelja. No sljedeće jutro, dok sam još bila u bolnici, primila sam telefonski poziv. Bila je to moja liječnica iz Clevelanda, Marie Budev. I imali su pluća. Koja odgovaraju. Stigla iz Teksasa. I svi su bili istinski sretni zbog mene, osim mene. Jer unatoč svim problemima, provela sam cijeli život trenirajući svoja pluća i nije me baš oduševljavala ideja da ih napustim. Odletjela sam u Cleveland. I moja je obitelj pojurila tamo nadajući se da će me vidjeti i reći mi ono što smo znali da bi mogao biti posljednji zbogom. No organi ne čekaju. I otišla sam na kirurgiju prije nego što sam se pozdravila. Posljednje čega se sjećam bilo je ležanje na bijeloj plahti i moj kirurg kojem sam rekla da želim opet vidjeti svoju majku te da ga molim da pokuša sačuvati moj glas. Utonula sam u apokaliptičan svijet snova.
During the thirteen-and-a-half-hour surgery, I flatlined twice, 40 quarts of blood were infused into my body. And in my surgeon's 20-year career, he said it was among the most difficult transplants that he's ever performed. They left my chest open for two weeks. You could see my over-sized heart beating inside of it. I was on a dozen machines that were keeping me alive. An infection ravaged my skin. I had hoped my voice would be saved, but my doctors knew that the breathing tubes going down my throat might have already destroyed it. If they stayed in, there was no way I would ever sing again. So my doctor got the ENT, the top guy at the clinic, to come down and give me surgery to move the tubes around my voice box. He said it would kill me. So my own surgeon performed the procedure in a last-ditch attempt to save my voice.
Tijekom 13 i pol sati dugog zahvata dvaput su prestale sve moje vitalne funkcije, a u moje je tijelo uneseno oko 38 litara krvi. Moj je kirurg rekao da je u njegovoj 20-godišnjoj karijeri moja transplantacija bila jedna od najtežih koje je ikad izveo. Grudni koš ostavili su otvorenim dva tjedna. Mogli su vidjeti moje preveliko srce kako kuca u njemu. Bila sam priključena na desetak aparata koji su me održavali na životu. Koža mi je bila zahvaćena infekcijom. Nadala sam se da će mi glas ostati sačuvan, no moji su liječnici znali da su ga cjevčice respiratora koje idu niz grlo možda već uništile. Ostanu li cjevčice unutra, nema šanse da ću ikada više pjevati. Moj je liječnik pozvao specijalista za uho, grlo i nos -- najboljeg na klinici - da dođe i izvede operativni zahvat pomicanja cjevčica oko grkljana. Rekao je da će me to ubiti. Tako je moj kirurg izveo zahvat u očajničkom pokušaju da mi sačuva glas.
Though my mom couldn't say goodbye to me before the surgery, she didn't leave my side in the months of recovery that followed. And if you want an example of perseverance, grit and strength in a beautiful, little package, it is her. One year ago to this very day, I woke up. I was 95 lbs. There were a dozen tubes coming in and out of my body. I couldn't walk, I couldn't talk, I couldn't eat, I couldn't move, I certainly couldn't sing, I couldn't even breathe, but when I looked up and I saw my mother, I couldn't help but smile.
Premda se mama nije mogla pozdraviti sa mnom prije operacije, tijekom mjeseci koji su slijedili nije napuštala moju postelju. Ako želite primjer ustrajnosti, izdržljivosti i snage u lijepom malom paketiću, to je ona. Prije točno godinu dana, ustala sam iz kreveta. Težila sam 42 kg. Desetak cjevčica ulazilo je i izlazilo iz mog tijela. Nisam mogla hodati, nisam mogla govoriti, nisam mogla jesti, nisam se mogla kretati i dakako da nisam mogla pjevati. Nisam mogla niti disati, no kad sam pogledala gore i vidjela svoju majku, mogla sam se samo nasmiješiti.
Whether by a Mack truck or by heart failure or faulty lungs, death happens. But life isn't really just about avoiding death, is it? It's about living. Medical conditions don't negate the human condition. And when people are allowed to pursue their passions, doctors will find they have better, happier and healthier patients. My parents were totally stressed out about me going and auditioning and traveling and performing all over the place, but they knew that it was much better for me to do that than be preoccupied with my own mortality all of the time. And I'm so grateful they did.
Sudarom s kamionom, srčanim udarom ili s lošim plućima, smrt se događa. No život nije baš samo izbjegavanje smrti, zar ne? Radi se o življenju. Zdravstveno stanje ne negira ljudsko stanje. A ako ljudi mogu strastveno slijediti svoje snove, liječnici će ustanoviti da imaju bolje, sretnije i zdravije pacijente. Moji su roditelji bili potpuno u stresu od mog odlaženja, audicija i putovanja i nastupa posvuda, no znali su da je to puno bolje za mene nego biti stalno zaokupljena vlastitom smrtnošću. I silno sam zahvalna što je tako bilo.
This past summer, when I was running and singing and dancing and playing with my nieces and my nephews and my brothers and my sisters and my mother and my grandmother in the Colorado Rockies, I couldn't help but think of that doctor who told me that I couldn't sing. And I wanted to tell her, and I want to tell you, we need to stop letting disease divorce us from our dreams. When we do, we will find that patients don't just survive; we thrive. And some of us might even sing.
Prošlo ljeto dok sam trčala i pjevala i plesala i igrala se s nećakinjama i nećacima i svojom braćom i sestrama te majkom i bakom u Colorado Rockies, nisam mogla ne sjetiti se liječnice koja mi je rekla da neću moći pjevati. I poželjela sam joj reći, a to želim reći i vama, moramo prestati dopuštati da nas bolest rastavlja od naših snova. Ako to učinimo, shvatit ćemo da pacijenti ne samo preživljavaju, mi napredujemo i sretni smo. A neki od nas mogli bi čak i pjevati.
(Applause) [Singing: French]
(Pljesak) [Pjeva: Francuski]
Thank you. (Applause) Thank you. And I'd like to thank my pianist, Monica Lee. (Applause) Thank you so much. Thank you.
Hvala vam. (Pljesak) Hvala vam. Želim zahvaliti mojoj pijanistici, Monici Lee. (Pljesak) Hvala najljepša. Hvala vam.