Metrofocus: July 25, 2022

A METROFOCUS SPECIAL TWO-NIGHT EVENT:  THE LONG COVID HEALTH CRISIS

Up to 1-in-5 adults who’ve survived COVID-19 are living with long COVID, a condition characterized by up to 200 symptoms that persist long after the initial infection is gone and can affect the body for months or even years.  It’s estimated that 1 million Americans have been forced to leave the labor force due to medical complications from long COVID, and even more have been impacted by long-term symptoms.  Tonight, in part-one of our special two-night discussion, we’ll hear from:  Kevin Devine, a Staten Island resident who after two years is still struggling with long COVID; Diana Berrent, a Long Island activist, advocate, and founder of Survivor Corps, the largest long COVID support and advocacy group in the nation; and Dr. Rainu Kaushal, Senior Associate Dean for Clinical Research at Weill Cornell Medicine, who is spearheading a multimillion-dollar study on long COVID and is one of the medical leaders selected for the NIH Researching COVID to Enhance Recovery (RECOVER) initiative.

TRANSCRIPT

> TONIGHT, OUR TWO-NIGHT SPECIAL COVERAGE ON LONG COVID KICKS OFF WITH THE STORIES OF TWO NEW YORKERS PROFOUNDLY IMPACTED BY THE DISEASE, INCLUDING ONE MAN HOSPITALIZED FOR NEARLY HALF A YEAR.

WE ALSO HEAR FROM ONE OF THE LEADING DOCTORS SEEKING TO BETTER UNDERSTAND LONG COVID, AS 'METROFOCUS' STARTS RIGHT NOW.

♪♪

> THIS IS 'METROFOCUS,' WITH RAFAEL PI ROMAN, JACK FORD, AND JENNA FLANAGAN.

'METROFOCUS' IS MADE POSSIBLE BY -- SUE AND EDGAR WACHENHEIM III, THE PETER G. PETERSON AND JOAN GANZ COONEY FUND, BERNARD AND DENISE SCHWARTZ, BARBARA HOPE ZUCKERBERG, THE AMBROSE MONELL FOUNDATION.

AND BY --

> GOOD EVENING, AND WELCOME TO THIS SPECIAL EDITION OF 'METROFOCUS.'

I'M RAFAEL PI ROMAN.

FOR THE NEXT TWO NIGHTS WE'LL BE TAKING A CLOSE LOOK AT LONG COVID, EXPERIENCED BY AN ESTIMATED 1 IN 5 ADULTS WHO HAVE CONTRACTED COVID-19.

THOUGH EVERY PERSON'S SITUATION IS UNIQUE, THOSE SUFFERING FROM LONG COVID TEND TO EXPERIENCE SYMPTOMS FOR MONTHS OR EVEN YEAR AFTER THEIR INITIAL INFECTION IS GONE.

AND THE SYMPTOMS CAN BE WIDE RANGING.

AS OF NOW, THE CDC LISTS OVER 200 AILMENTS THAT COULD BE AFFILIATED WITH LONG COVID.

TOMORROW WE'LL PHOENIX ON WHAT WE'RE LEARNING ABOUT THE DISEASE AND WHAT MAY BE CAUSING IT TO HAPPEN.

BUT TONIGHT WE'LL BE EXPLORING THE DEVASTATING IMPACT LONG COVID CAN HAVE ON PEOPLE'S LIVES AS WE HEAR DIRECTLY FROM TWO NEW YORKERS WHO HAVE BEEN DRAMATICALLY AFFECTED BY IT.

JOINING US NOW ARE KEVIN DEVINE, A LONG COVID SURVIVE, DIANA BEHRNDT, FOUNDER OF THE LONG COVID SURVIVOR GROUP AND A LONG COVID SURVIVOR HERSELF, AND DR. RANU CASHLE DEAN FOR RESEARCH AT WILD CORNELL MEDICINE IN NEW YORK PRESBYTERIAN MEDICINE.

THANK YOU ALL FOR JOINING US.

THANK YOU FOR HAVING ME.

DOCTOR, BEFORE WE HEAR FROM KEVIN AND DIANA ABOUT THEIR PERSONAL EXPERIENCES WITH COVID AND LONG COVID.

I WONDER IF YOU COULD FIRST EXPLAIN TO US JUST WHAT LONG COVID IS, GIVE US THE CLIFF NOTE VERSION OF IT, BECAUSE TOMORROW WE'RE GOING TO GET INTO THE DETAILS OF DISEASE.

SO START OFF WITH IS THIS.

SURE, ABSOLUTELY.

THANK YOU FOR HAVING ME TODAY AS WELL.

LONG COVID GOES BY MANY NAMES WE CALL IT LONG COVID.

SOMETIMES YOU'LL HEAR THE PHRASE LONG HAULERS.

IN THE SCIENTIFIC LITERATURE WE CALL IT THE POST ACUTE SEQUELI OF SARS CO-V-2 INFECTION.

WHAT IT REFERS TO HAVE CLUSTER OF SIGNS AND SYMPTOMS THAT START 30 DAYS OR MORE AFTER THE INITIAL INFECTION.

SO THAT'S IT.

IN A NUTSHELL.

IN A NUTSHELL.

IT CAN LOOK DIFFERENT IN EACH PATIENT.

WE'LL CERTAINLY GET TO THAT TOMORROW, MAYBE LATER TODAY AS WELL.

KEVIN, I HEARD YOU TALK ABOUT YOUR STORY ON THE 'DREW BARRYMORE SHOW', AND I HAVE TO TELL YOU IT'S ONE OF THE MOST FASCINATING BUT MOVING STORIES OF THE COVID EXPERIENCE THAT I'VE EVER HEARD SOME PLEASE TAKE US BACK FROM THE MOMENT THAT YOU FIRST TESTED POSITIVE AND YOUR WHOLE EXPERIENCE WITH COVID SINCE.

SO, GO AHEAD.

OKAY, THANK YOU FOR THE KIND WORDS AND READING -- WATCHING THE STORY AND SEEING IT, IT ALL STARTED FOR ME ON MARCH 20, 2020.

THE WEEK BEFORE I WASN'T FEELING GOOD.

I WENT TO A DOCTOR.

HE GAVE ME ANTIBIOTICS.

HE SAID, YOU SHOULD BE OKAY.

YOU GOT TO UNDERSTAND, WHEN THIS HAPPENED TO ME, THIS WAS STILL CALLED CORONA.

WASN'T COVID YET.

I WENT TO THE HOSPITAL.

WASN'T FEELING GOOD.

GOT SWABBED.

THE DOCTOR CAME IN THE ROOM AND SAID, KEVIN, YOU'RE POSITIVE FOR THIS VIRUS, COVID.

AND I SAID POSITIVE?

I WAS LIKE, WHAT IS THIS ALL ABOUT IN TO ME I THOUGHT IT WAS AN OVERSIZED FLU.

LIKE THIS IS A FLU THAT WAS GOING TO KNOCK YOU OFF YOUR FEET FOR A DAY OR TWO AND YOU WOULD BE FINE.

THEY GAVE ME ALL SORTS OF THINGS.

TWO DAYS INTO IT, MY BREATHING -- THE DOCTOR WILL ADMIT, YOUR BREATHE TAKE, A BEATING.

THEY HAD ME ON OXYGEN.

THEY WERE INCREASING AND INCREASING IT.

THE DOCTOR COMES IN AND SAYS TO ME, KEVIN, YOU'RE DYING.

YOU'RE NOT GOING TO MAKE IT.

IT WAS A THURSDAY.

HE GOES, I HAVE TO PUT YOU ON A VENTILATOR.

I LOOK AT THE DOCTOR AND SAYS, I'M NOT GOING ON ANY VENTILATOR.

ANYBODY GOING ON A VENTILATOR, THEY'RE DYING.

HE GOES, THIS IS YOUR ONLY CHANCE.

HE WALKS OUT OF THE ROOM -- NOW REMEMBER, FOLKS, I HAVE NO FAMILY, NOBODY THERE TO TALK TO.

I'M BY MYSELF.

I HAVE A GOWN IN FRONT, GOWN IN BACK AND SLIP BY SOCKS.

THAT'S IT.

NO PHONE, NO NOTHING.

HE WALKS OUT OF THE ROOM AND I HAD A NURSE, JANINE ADAMULE.

I WANT TO MAKE SURE I GET HER NAME OUT THERE.

THIS YOUNG LADY SAVES MY LIFE.

SHE SITS ON THE EDGE OF MY BED AND SAID, KEVIN, YOU REMIND ME OF MY FATHER.

MY FATHER WERE SITTING IN THIS ROOM I'D MAKE SURE HE KWOS ON THE VENTILATOR.

I'M LOOKING A THIS THE YOUNG GIRL, COULD HAVE BEEN MY DAUGHTER, AND I GO, YOU'RE SERIOUS?

SHE SAYS, VERY.

I RING THE BELL, BRING EVERYBODY BACK AND SAYS, LET'S DO THIS.

SHE GOES, ARE YOU SURE?

I GO, I HAVE NO CHOIMS I HAVE NO CHOICE.

WELL, THE NEXT THING I KNOW I HAVE NURSES ON THE RIGHT, NURSES TO THE LEFT, DOCTORS BEHIND ME, EVERYBODY'S PUTTING ALL THESE THINGS IN MY ARM.

THERE WAS ANOTHER NURSE THERE, TINA MARIE.

I WANT TO GET HER NAME OUT THERE.

I GRAB HER HAND.

NOW WHEN I LOOK BACK, I FEEL BAD I DID IT.

I DO AND I DON'T.

I GRAB HER HAND, I'M HOLDING HER HAND TIGHT.

I LOOK HER SQUARE IN THE EYES AND SAYS, PLEASE DON'T LET ME DIE.

DON'T LET ME DIE.

SHE LOOKED AT ME.

YOU'RE NOT GOING TO DIE.

GREAT NURSE.

TELLS ME WHAT YOU WANT TO HEAR.

PEOPLE DIE LEFT AND RIGHT.

YOUR CHANCES ARE SLIM TO NONE.

THAT'S NOT WHAT THEY TELLS ME.

SHE LOOKS ME SQUARE IN THE EYE AND SAYS, YOU'RE GOING MAKT.

YOU'RE A STRONG GUY.

I TOLD THEM, IF I DON'T, PLEASE TELL MY FAMILY I LOVE THEM.

YOU GOT TO REMEMBER, GUYS, THIS IS THE LAST PERSON I'M SEEING.

IF I DON'T MAKE IT, THAT'S IT.

I NEVER HAD THAT CHANCE TO SAY GOOD-BYE TO MY WIFE, MY SON, MY DAUGHTER.

I'M REALIZING THAT.

IT'S A HARD PLACE IN LIFE.

THAT MOMENT IN TIME THAT NURSE IS OUR ONLY SENSE OF HELP.

WHEY MEAN I FEEL BAD I PUT HER ON THE SPOT, I DIDN'T REALIZE AT THE TIME HOW MANY PEOPLE WERE DYING ON THESE POOR NURSES, AND HERE I AM HOLDING HER HAND, CLUTCHING HER HAND TELLING HER, DON'T LET ME DIE.

YOU IMAGINE WHAT IT DID TO HER.

I SEE IT TODAY.

I DIDN'T SEE IT THEN.

WE SPOKE ABOUT IT.

SHE SAYS, KEVIN, YOU DON'T UNDERSTAND.

YOU GAVE ME THAT SENSE OF, LIKE, YOU'RE GOING TO MAKT, YOU'RE GOING TO MAKE IT.

FAST FORWARD.

48 DAYS LATER I WOKE UP.

NOT REALIZING IT WAS 48 DAYS LATER, NOT REALIZING WHAT HAPPENED TO ME.

I SWEAR TO GOD -- YOU WILL BE LIKE NO WAY -- I THOUGHT IT WAS THE NEXT DAY.

I WOKE UP, THOUGHT IT WAS FRIDAY.

THE GIRL LOOKS AT ME AND GOES, NO, GIVEN, IT'S MAY.

MAY?

I COULDN'T TALK.

I HAD EVERYTHING IN ON ME.

I COULDN'T TALK.

I'M SITTING THERE SAYING, MAY?

MAY OF WHAT YEAR?

YOU KNOW, MAY OF WHAT YEAR?

YOU KNOW, 2020?

2021?

WHERE ARE WE?

SHE EXPLAINED IT TO ME, AND THAT'S WHEN I REALIZED HOW BAD OFF I WAS.

YOU KNOW, HOW REALLY BAD OFF I WAS.

AND THEN THERE WAS ROAD TO RECOVERY.

THE BED SORES.

I WAS IN A COMA FOR 48 DAYS.

I HAD TREMENDOUSLY BAD BED SORES.

LEARNING HOW TO WALK, LEARNING HOW THE TALK, LEARNING TO FEED MYSELF.

I WAS SO BAD I COULDN'T HOLD A FORK.

I HOPE YOU GUYS CAN SEE IT.

MY HAND WAS SHAKING LIKE THIS.

I HAD TO BE SPOON FED BACK TO LIFE.

LIVED ON A LIQUID DIET FOR PROBABLY 30 TO 40 DAYS.

SO IT WAS JUST LIQUIDS.

I LOST 137 POUNDS.

LOST EVERYTHING.

LOST EVERYTHING.

BUT I WAS ALIVE.

I WAS ALIVE.

AND LET ME ASK YOU SOMETHING.

I WANT TO YOU TOUCH ON THIS.

WHILE YOU WERE RECUPERATING AFTER THOSE 40 PLUS DAYS OF A COMA, YOU HAD DOWN MOMENTS.

TALK ABOUT THE NURSE THAT YOU SAID GAVE YOU WILL.

OR IT WAS ACTUALLY A DOCTOR, RIGHT?

YES, I FOUND OUT LATER IT WAS A DOCTOR.

SHE CAME IN THE ROOM ONE NIGHT, AND I WAS JUST CRYING.

I'M NOT PROUD TO SAY I WAS CRYING.

I HATE TO SAY IT BECAUSE MY FRIENDS WILL GIVE ME A HARD TIME, BUT I WAS LAYING IN THAT BED CRYING, WONDERING, WILL I EVER WALK AGAIN?

WILL I EVER BE WHO I AM AGAIN?

I WASN'T OUT OF THE WOODS YET.

WAS I GOING TO LIVE?

WAS THIS JUST A TEASE?

WOKE UP, COMING BACK TO LIFE OR GET HIT ARE THE VIRUS AGAIN AND IT KILLS ME?

I WAS NEVER OUT OF THE WOODS.

I HAD TUBED IN ME.

I WAS LAYING IN BED.

SHE COMES IN AND JUST FELT SO BAD FOR ME.

I THINK AT THAT MOMENT IN TIME, I THINK IF I COULD HAVE TOLD HER, TURN THE SWITCH OFF ON ME, I THINK I WOULD HAVE.

THAT'S HOW DEPRESSED I WAS AT THIS MOMENT.

AND I KEPT SAYING, WHERE'S MY FAMILY?

BECAUSE I DID NOT UNDERSTAND WHAT A PANDEMIC WAS.

I'M 58.

AT THE TIME I WAS 56.

DIDN'T KNOW WHAT A PANDEMIC WAS.

I NEVER LIVED THROUGH ONE, NOT IN MY 56 YEAR OF LIFE.

WHAT WAS A PANDEMIC?

DID NOT UNDERSTAND THAT.

DID NOT UNDERSTAND WHY MY FAMILY COULDN'T SEE ME.

YOU GOT TO REMEMBER, YOUR EMOTIONS ARE EVERYWHERE.

OF COURSE.

YOU'RE UNDER A LOT OF DRUGS SO KEEP YOU -- YOU'RE MEDICATED TO KEEP YOU FROM THE SEVERITY OF YOUR PAINS, SO YOUR MIND'S NOT WORKING.

AND I JUST COULDN'T UNDERSTAND, WHERE IS MY FAMILY?

DID THEY DESERT ME FROM THIS?

OR DID THEY DIE?

SHE CALLS MY WIFE AND SAYS, IS THERE ANY WAY YOU CAN SEND A PICTURE, A PICTURE OF YOU GUYS?

HE'S JUST DEPRESSED.

AND SHE SENT A PICTURE OF ME, LORI, MICHELLE, AND OUR LITTLE DOG.

WE HAVE A LITTLE DOG.

AND SHE SENT THAT PICTURE, AND LET ME TELL YOU SOMETHING, GUYS, THAT WAS MOTIVATION TO GET UP AND OUT OF THAT BED LIKE YOU WOULD NOT BELIEVE.

I HAD THEM PUT THAT PICTURE AT THE END OF THE BED ON THE WALL.

I STARED AT THAT EVERY SINGLE DAY.

I TOOK IT TO THE NURSING HOME.

BECAUSE THEY EVENTUALLY HAD TO TRANSFER ME TO A NURSING HOME BECAUSE THEY WERE SO OVERRAN WITH COVID PATIENTS THEY HAD TO PUT YOU SOMEWHERE.

SO THAT PHOTO KEPT YOU GOING.

MY GOD, YES.

LET ME INTERRUPT YOU THERE.

YOU TALK ABOUT THE ISOLATION AND THE SEPARATION FROM YOUR FAMILY, THE PEOPLE WHO LOVE YOU MOST AT THE MOST DIFFICULT TIME OF YOUR LIFE.

AND I'M WONDERING, IF YOU'VE EVER THOUGHT ABOUT THE FACT -- IF YOU HAD NOT BEEN ISOLATED FROM YOUR FAMILY, IF THEY HAD BEEN ABLE TO VISIT YOU, DO YOU THINK THAT PERHAPS IRONICALLY YOUR HEALTH CONDITION MIGHT HAVE BEEN IMPROVED?

IF A PICTURE LIKE THAT MADE THAT MUCH OF A DIFFERENCE, WOULD THEIR PRESENCE, DO YOU THINK, HAVE MADE YOUR RECOVERY?

GOOD QUESTION.

GOOD QUESTION.

AND YOU'RE PROBABLY RIGHT, IT WOULD HAVE HELPED, BECAUSE YOU GET THAT LOVED ONE TO HOLD YOUR HAND, TO TELL YOU THEY LOVE YOU, YOU GET THAT FEELING WHEN YOU HOLD SOMEBODY'S HAND THAT CARES ABOUT YOU.

BUT IN THE SAME SENSE, WOULD I HAVE DONE THAT AND JEOPARDIZED THEIR HEALTH TO BE THERE?

WOULD HAVE BEEN AN ISSUE THEN.

BUT THAT'S THE QUESTION, AND DOCTOR, LET ME GO TO YOU FOR THIS.

HINDSIGHT OF COURSE IS ALWAYS 20/20, AND KEVIN IS TALKING ABOUT A MOMENT IN THE PANDEMIC WHERE KNOWLEDGE OF THE VIRUS WAS SCANT.

YOU KNOW, THE VERY BEGINNING OF IT.

BUT IN HINDSIGHT, DO YOU THINK THAT THE MEDICAL COMMUNITY PERHAPS MIGHT HAVE MADE A MISTAKE BY ISOLATING THESE PATIENTS?

IF A PHOTOGRAPH AHEAD THAT MUCH OF A DIFFERENCE IN KEVIN'S LIFE TO GIVE HIM THE WILL TO KEEP GOING, IMAGINE WHAT THE PRESENCE OF A REAL FAMILY MIGHT HAVE DONE, NOT ONLY FOR HIS SURVIVE, AND YOU PERHAPS FOR THE SURVIVAL OF THE TENS OF THOUSANDS WHO DIDN'T MAKE IT.

YEAH, IT'S INTERESTING QUESTION, AND I THINK THAT THE MENTAL HEALTH TOLL OF COVID AND LONG COVID CAN'T BE UNDERESTIMATED.

IT'S AFFECTED EVERY ONE OF US ACROSS THIS COUNTRY.

DOESN'T MATTER IF YOU'RE A CHILD, A PARENT, A HEALTH-CARE GIVER, EDUCATOR, IT'S AFFECTED EVERY SINGLE HUMAN BEING.

I DO THINK THAT IN THE BEGINNING -- IN MARCH AND APRIL, PARTICULARLY IN NEW YORK CITY -- I DON'T THINK WE HAD ANY OPTION.

WE WERE THAT CROWDED.

OUR SYSTEM WAS THAT STRESSED THAT TO BRING IN FAMILY WOULD BE TO PUT FAMILY AT RISK FOR A DISEASE THAT WE DIDN'T KNOW HOW TO TREAT, THAT WE DIDN'T KNOW HOW TO PREVENT, AND I THINK THAT, LIKE KEVIN IS SAYING, THAT MANY PEOPLE WOULD HAVE CHOSEN TO KEEP THEIR LOVED ONES SAFE.

DO I WISH IT WAS DIFFERENT?

ABSOLUTELY.

ABSOLUTELY.

IT'S HEARTBREAKING, KEVIN, TO HEAR YOUR STORY AND TO HEAR THE AMOUNT OF ISOLATION YOU SUFFERED ACUTELY, AND I'M SURE THE EFFECTS DURING THAT PERIOD OF TIME AND THE LONG-TERM EFFECTS OF THAT.

SO, KEVIN -- DIANA, I PROMISE I'M GOING TO GIVE YOU TO YOU IN ONE MOMENT.

I JUST WANT TO GO BACK TO KEVIN QUICKLY.

YOU'RE WAKING UP FROM THE COMA, AND YOUR RECUPERATION FROM YOUR COMA IS NOT THE END OF THE COVID STORY.

YOUR COVID STORY IS STILL GOING ON.

HOW IS LONG COVID AFFECTING YOU NOW?

THAT'S A GREAT QUESTION, TOO.

IT'S MOST MAIZING THING IN THE WAY I CAN'T -- I DO A LOT OF THINGS WHERE I'M VERY FORGETFUL.

FORGETFUL.

LORI WILL SAY, KEVIN, I HAVE TO RUN OUT.

WE HAVE A DISABLED DAUGHTER, OUR DAUGHTER IS IN A WHEELCHAIR, SO LIFE IS TOUGH WITH US.

WITHOUT COVID HAPPENING TO US.

SHE'LL SAY, KEVIN, WILL YOU DO MANY A FAVOR, I PUT IN LAUNDRY, NO BIG DEAL.

SHE'LL LEAVE AND COME BACK AND GO IN THE LAUNDRY ROOM AND SAID, KEVIN, I ASKED YOU ONE LITTLE FAVOR.

I GO, I DO IT.

SHE GOES, KEVIN, YOU DIDN'T DO IT.

IF YOU WOULD HAVE BET ME A MILLION DOLLARS I WOULD HAVE TAKEN THAT BET.

I GO AND LOOK IN THE LAUNDRY ROOM AND, OH, MY GOD, I DIDN'T.

BUT I WOULD HAVE SWORE ON A STACK OF BIBLES I DID IT.

SO, THE MEMORY LOSS.

THE DAZED AND CONFUSED DAZE.

YOU WAKE UP, YOU'RE TOTALLY DAZED AND CONFUSED ALL DAY.

AND I CAN'T SEEM TO GET IT RIGHT.

LIKE, WHY AM I NOT REALIZING TODAY IS A THURSDAY?

WHY AM I NOT REALIZING TODAY IS JULY?

I JUST CAN'T GET IT IN MY HEAD.

NO ALL THE TIME, BUT A LOT OF TIMES.

I WALK UP A FLIGHT OF STAIRS.

I WALK UP, GET TO THE TOP HOLDING THE RAILING AND I'M SUCKING WIND.

DON'T GET ME WRONG.

I'M GOING TO DOCTORS -- A HEART GUY, A LUNG GUY.

I'M GOING ALL THESE DOCTORS.

KNOCK ON WOOD, THEY ARE TELLING ME EVERYTHING IS GOOD.

BUT WHEN I TELL THEM I GET TO THE TOP OF THE STEPS AND I'M HANGING ON THE RAILING AND I'M BREATHING HEAVY, NOT IN MY EYES.

I GUESS, MAYBE, DOCTOR, YOU CAN HELP ME WITH THESE QUESTIONS.

MAYBE YOU CAN DO ALL THESE TESTS AND HEY, YOU LOOK GOOD ON THE TESTS.

BUT THE TEST IS NOT GOING TO SHOW HELP GOING UP THE TOP TO HAVE THE STEPS SUCKING WIND.

IT'S NOT GOING SHOW ME SITTING AT THE KITCHEN TABLE WITH A CUFF OF COFFEE NOT ANYING IF IT'S A MONDAY OR TUESDAY, JUNE OR JULY.

ESPECIALLY NOW, LORI GOES, KEVIN, YOU HAVE TO DO ALL THESE THINGS.

IT'S ALMOST LIKE SHE'S GOT TO TIE THE THING AROUND MY -- LITTLE STRING AROUND MY HAND TO SAY, THIS IS WHAT YOU'VE GOT TO DO.

I WANT TO GET DIANA IN HERE.

DIANA, YOU GOT COVID VERY EARLY ON AS WELL.

I THINK ALSO IN MARCH OF 2020 IF I'M NOT MISTAKEN.

IT'S AN INTERESTING STORY YOURS, NOT ONLY BECAUSE OF THE EFFECT IT HAD ON YOUR HEALTH, BUT WHAT YOU DECIDED TO DO ABOUT IT DURING YOUR ISOLATION.

SO, TELL US YOUR STORY.

THANK YOU SO MUCH.

I HAD IN ONE WAY A VERY TYPICAL CASE OF COVID AND IN OTHER WAYS, COMPLETELY UNIQUE.

I WAS ONE OF THE FIRST PEOPLE IN THE UNITED STATES TO GET A POSITIVE DIAGNOSIS OF COVID IN EARLY MARCH OF 2020, AND I WAS NEVER HOSPITALIZED.

I HAVEH A VERY AVERAGE CASE OF COVID.

NOT ONLY WAS I ONE OF THE FIRST PEOPLE TO GET A CONFIRMED DIAGNOSIS, I WAS ONE OF THE FIRST PEOPLE TO BE DIAGNOSED AND GO PUBLIC WITH MY STORY.

PEOPLE WERE EITHER -- EITHER YOU ENDED UP IN THE EMERGENCY ROOM LIKE KEVIN, THE ICU, OR YOU GOT DIAGNOSED AND YOU STAYED SILENT BECAUSE IT REALLY WAS BEING TREATED LIKE A VENEREAL DISEASE AT THE MOMENT.

THIS WAS ONE WRONG BREATH.

I WANTED TO DO PROPER CONTACT TRACING THAT WAS MY MOTIVATION.

I SPENT 18 DAYS IN ISOLATION WITH A 'MILD' COVID CASE.

WHICH INCLUDES MILD ENSIEF LITES, AND OTHER THINGS.

DURING THAT TIME I BECAME OBSESSED WITH THE IDEA OF THE POWERS THAT I WOULD HAVE AS A SURVIVOR.

IF I WAS GOING TO BE ONE OF THE FIRST PEOPLE DIAGNOSED, AND PRESUMABLY I WAS GOING TO BE ONE OF THE FIRST SURVIVORS OF COVID, AND THAT WOULD ALLOW ME TO DONATE MY PLASMA BECAUSE I HAD BUILT A SOLID ANTIBODY DEFENSE.

THE ANTIBODIES LIVE IN YOUR PLASMA, WHICH IS THE SORT OF YELLOWISH WATERY PART OF YOUR BLOOD, AND BY DONATING IT, I COULD SAVE THE LIVES OF OTHER PEOPLE WHOSE BODIES HAD NOT MOUNTED THE PROPER ANTIBODY DEFENSES MINE HAD.

SO I WAS NOT GIVING MADE MY IMMUNITY BUT SHARING IT.

IF I COULD DO THAT, IMAGINE WHAT A COALITION OF PEOPLE COULD DO.

AND SO I STARTED SURVIVOR CORPS.

I NAMED IT AFTER THE PEACE CORPS, ACTUALLY, ON MARCH 24, 2020, WITH THE MISSION OF MOBILIZING AN ARMY OF SURVIVORS TO DONATE THEIR PLASMA, BUT MOREOVER, TO PARTNER WITH THE SCIENTIFIC AND MEDICAL COMMUNITY SO WE COULD SHARE OUR STORY, SHARE OUR EXPERIENCE, TISSUE SAMPLES, WHATEVER IT IS THAT'S NEEDED, BECAUSE SO MANY OF THE ANSWERS TO THE MYSTERIES OF THIS NOVEL VIRUS LAY IN THE BODIES OF SURVIVORS LIKE ME.

I TURNED MYSELF INTO A GUINEA PIG.

NOT ONLY DID I GET TESTED TWICE ON THE FRONT END OF 2020, TWICE ON THE BACK END.

I RECEIVED THE FIRST ANTIBODY TEST IN AMERICA, FIRST T-CELL TEST, I VOLUNTEERED FOR EVERY STUDY.

I CREATED A GROUP CALLED SURVIVOR CORPS WHERE WE NOW HAVE 200,000 MEMBERS AND WE ARE ACTIVELY CONNECTING THEM WITH TRIALS, WITH STUDIES SO THEY CAN BE PART OF THE ULTIMATE SOLUTION.

AND I WANT TO TALK TOMORROW AT SOME GREAT LENGTH ABOUT SURVIVOR CORPS, BECAUSE -- BECAUSE IT MADE A CONTRIBUTION.

IT EVOLVED AND CONTINUES TO MAKE A CONTRIBUTION.

PERHAPS A LITTLE DIFFERENT THAN YOU INITIALLY CONCEIVED.

BUT TO YOUR HEALTH, GOING BACK TO YOUR PERSONAL HEALTH, YOU KNOW, KEVIN'S SYMPTOMS NEVER LEFT HIM.

THEY GOT BETTER A LITTLE BIT AND CHANGED A LITTLE BIT, BUT HE HAS HAD SYMPTOMS SINCE HE FIRST GOT IT.

YOUR SITUATION WAS DIFFERENT.

YOU GOT COVID.

THEY WENT AWAY, BECAUSE THEY CAME BACK.

IS THAT RIGHT?

IT DID.

I HAD ASYMPTOMATIC RELAPSE TWO MONTHS AFTER RECOVERING FROM COVID.

BUT THE POINT THAT I THINK IS IMPORTANT HERE IS I THINK THAT THERE ARE REALLY TWO BASKETS OF PEOPLE.

THERE ARE THE PEOPLE WHO ARE SICK, AND WHETHER IT'S A RELAPSING, REMITTING PATTERN OR CONTINUOUS, IT'S PERSISTENT SYMPTOMS THAT YOU HAD DURING THE ACUTE STAGE.

IN FACT, I DON'T LIKE CALLING IT THE ACUTE STAGE, BECAUSE FOR MANY PEOPLE THE ACUTE STAGE HAPPENS AFTER THE INFECTIOUS PERIOD, SO REFERRING JUST TO THE INFECTIOUS STAGE, THERE ARE PEOPLE LIKE ME WHO HAVE PERSISTING SYMPTOMS, WHICH I THINK REALLY RESOLVED BY TIME.

IT TAKES A LONG TIME FOR SWELLING OF THE BRAIN TO COME DOWN.

IT TAKES TIME FOR YOUR BODY TO RECOVER.

THE PEOPLE WITH LONG COVID WHO I SEE HAVING THE MOST DIFFICULT TIME ARE THE ONES WHO ARE EXPERIENCING NEW NOVEL SYMPTOMS AFTER THE INFECTIOUS PERIOD, AND I WAS LUCKY THAT I DIDN'T.

WE'LL TALK ABOUT THAT TOMORROW.

DOCTOR, I WANT TO GET BACK TO YOU.

BOTH KEVIN AND DIANA GOT COVID BEFORE THE VACCINES WERE DEVELOPED AND AT THE VERY BEGINNING OF THE PANDEMIC.

AND SOME MIGHT SAY, WELL, THAT'S WHY THEY HAVE LONG COVID.

BUT THAT'S NOT THE CASE.

EVERYONE WHO I KNOW THAT HAS LONG COVID GOT IT RELATIVELY RECENTLY, AND ALL OF THEM WERE VACCINATED AND BOOSTERED.

TO WHAT DEGREE DO THE VACCINES HELP PREVENT LONG COVID?

YEAH, IT'S AN EXCELLENT QUESTION.

SO I THINK ESSENTIALLY WHAT YOU'RE ASKING IS, WHAT ARE THE PREDICTORS WE KNOW THAT MAKE ONE MORE LIKELY TO GET LONG COVID.

YEAH.

AND BEING INFECTED EARLY ON WITH THE ORIGINAL VARIANT, WITH THE DELTA VARIANT, CERTAINLY IS A RISK FACTOR FOR LONG COVID.

NOT HAVING A VACCINE CERTAINLY A RISK FACTOR FOR LONG COVID.

BUT SIT A RISK FACTOR BECAUSE YOU ARE MORE LIKELY TO GET COVID OR BECAUSE YOU ARE MORE LIKELY TO GET SEVERE COVID?

AND THOSE ARE SOME OF THE QUESTIONS THAT WE'RE STARTING TO TEASE OUT.

OUR GROUP ALSO HAS SOME EARLY EVIDENCE THAT SHOWS THAT AFRICAN AMERICANS AND HISPANICS ARE AT GREATER RISK FOR LONG COVID AND THAT PEOPLE FROM LOWER SOCIOECONOMIC STRATA, IF THEY GET COVID, ARE AT GREATER RISK FOR LONG COVID.

AND THE LAST RISK FACTOR IS HAVING A LOT OF UNDERSTOOD LYING MEDICAL CONDITIONS.

WHAT'S INTERESTING, THOUGH, IS THAT THE STORIES -- EVEN THE TWO STORIES WE'VE HEARD TODAY, WE HAVE, YOU KNOW, ONE EXAMPLE OF SOMEBODY WHO HAD VERY SEVERE COVID AND ONE EXAMPLE OF SOMEBODY WHO HAD FAIRLY MILD COVID AND BOTH OF THEM WENT ON TO HAVE PROLONGED SYMPTOMS.

AND WE HAVE STORIES OF PEOPLE WHO NEVER KNEW THAT THEY WERE ACUTELY INFECTED AND GO ON TO HAVE LONG COVID.

YEAH, AND WE'LL TALK ABOUT ALL THAT.

WE ONLY HAVE A COUPLE OF MINUTES.

IN ONE MINUTE, DIANA, YOUR SURVIVOR CORPS NOW IS BASICALLY YOU SHARE A LOT OF INFORMATION.

AS I SAID IN THE INTRODUCTION.

AND IF YOU COULD GIVE IT TO ME IN 30, 40 SECONDS, PEOPLE SHARE THEIR SYMPTOMS.

GIVE US A COUPLE OF EXAMPLES OF THE MORE UNIQUE SYMPTOMS THAUF HEARD ABOUT?

I THINK TOO MUCH OF THE FOCUS HAS BEEN ON BRAIN FOG AND FATIGUE, AND WHILE THOSE ARE EXTREMELY BOTHERSOME SYMPTOMS AND I DON'T MEAN TO UNDERSTOOD PLAY THEM, WE'RE SEEING NEUROOPTHY THAT MIMICS DIABETES, PARKINSON FRESHMANERS, FEELING OF INNER VIBRATIONS DESCRIBED AS TURNING A CELL PHONE ON IN THE MIDDLE OF THEIR CHEST CAVITY AT RANDOM THESE ARE THE SYMPTOMS CAUSING SUICIDE IDEAUATION.

KEVIN, I'LL GIVE YOU THE LAST WORD IN THIS PART OF THE PROGRAM.

WHAT IS THE ONE THING -- IN ABOUT A MINUTE, WHAT IS THE ONE THING YOU WOULD LIKE PEOPLE WHO ARE WATCHING NOW TO KNOW ABOUT LONG COVID THAT YOU THINK THEY SHOULD KNOW BUT MAY NOT KNOW?

IN ABOUT 50 SECONDS.

FIRST OF ALL, I HOPE I DON'T HAVE TO TELL YOU THAT IT'S REAL.

I HOPE I DON'T HAVE TO SAY THAT.

SOME PEOPLE TO THIS DAY DON'T BELIEVE IT'S REAL.

I HOPE -- DON'T EVER SAY IT'S NOT REAL.

IT'S REAL.

THE SCAR ON MY THROAT WILL PROVE TO YOU IT'S REAL.

THE SCARS ON MY BODY, THOSE ARE MY TATTOOS.

I DON'T HAVE TATTOOS.

I HAVE SCARS FROM THE MEDICAL THINGS DONE TO ME.

SO FIRST OF ALL, IT'S REAL.

THE DOCTOR, I HOPE SHE CAN GIVE ME AN ANSWER, I HOPE WE'RE ON THE RIGHT ROAD TO GET THIS LASSOED.

BECAUSE IT SEEMS LIKE IT'S KICKING BACK UP AGAIN.

THE NUMBERS ARE GOING UP.

WHY ARE THE NUMBERS GOING UP IN EVERYONE'S GETTING VACCINATED?

HOPEFULLY WE'LL GET INTO THAT TOMORROW.

OUR TIME IS UP FOR TODAY.

WE'LL SEE YOU ALL TOMORROW.

THANK YOU FOR JOINING US TODAY.

> 'METROFOCUS' IS MADE POSSIBLE BY -- SUE AND EDGAR WACHENHEIM III, THE PETER G. PETERSON AND JOAN GANZ COONEY FUND, BERNARD AND DENISE SCHWARTZ, BARBARA HOPE ZUCKERBERG, THE AMBROSE MONELL FOUNDATION.

AND BY --

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