Few an­swers for virus ‘long-haulers’

The Washington Post - - FRONT PAGE - BY LENNY BERN­STEIN

new haven, conn. — Covid-19 took its best shot at Edi­son Chiluisa in May, send­ing him to in­ten­sive care, but the dis­ease is still not done with him. For the past four months, long af­ter his re­lease from the hospi­tal, Chiluisa has been racked by lin­ger­ing ail­ments: Par­a­lyz­ing fa­tigue. Short­ness of breath. A stut­ter he never had be­fore.

“The dis­ease, it wears on you — body, mind and spirit,” Chiluisa, a 51-year-old hospi­tal worker, said re­cently. “You can be fine all day, and then all of a sud­den your body just shuts down. No ex­pla­na­tion. No rea­son. It just shuts down.”

But un­like some “long-haulers” in the early part of the pan­demic who strug­gled to per­suade any­one that symp­toms of covid-19 could last for months, Chiluisa is be­ing at­tended by a team of spe­cial­ists.

He sees a pul­mo­nolo­gist, a car­di­ol­o­gist, a neu­rol­o­gist, a res­pi­ra­tory ther­a­pist and a phys­i­cal ther­a­pist, and soon he will see a so­cial worker — a first step to­ward get­ting help for the toll the coro­n­avirus has in­flicted on his psy­che.

Even as they con­tinue to face the day-to-day med­i­cal de­mands of the pan­demic, care­givers such as Chiluisa’s are ad­just­ing to the re­al­ity that, for many thou­sands of peo­ple, the long-term con­se­quences of covid-19 may have to be man­aged for months, and pos­si­bly much longer. Long-haulers “are in ev­ery

coun­try, in ev­ery lan­guage,” said Igor J. Ko­ral­nik, who started a pro­gram for covid-19 neu­rocog­ni­tive prob­lems at North­west­ern Me­mo­rial Hospi­tal in Chicago, one of nu­mer­ous post-covid-19 clin­ics open­ing in the coun­try. “It’s go­ing to be a big prob­lem. It’s not go­ing to go away.”

Chiluisa’s care is co­or­di­nated by the Winch­ester Ch­est Clinic at Yale New Haven Hospi­tal. The Cen­ter for Post- Covid Care op­er­ated by the Mount Si­nai health­care sys­tem in New York City boasts on its web­site that it has clin­i­cal spe­cial­ists from 12 dis­ci­plines. Penn Medicine’s clinic in Philadel­phia bills it­self as a “postcovid as­sess­ment and re­cov­ery clinic.”

While doc­tors have ac­cu­mu­lated many years of ex­pe­ri­ence in the long-term man­age­ment of dis­eases such as di­a­betes and re­nal fail­ure, they have no such ex­per­tise in covid-19, which is barely 10 months old.

“The pa­tients are very scared be­cause no­body has very clear an­swers for them,” said Denyse Lutch­mans­ingh, Chiluisa’s pul­mo­nolo­gist. “They are happy to feel heard. They are happy that peo­ple are try­ing to help them. But at the end of the day, [they would] like to be told for sure: ‘ This is what is go­ing to hap­pen to you. This is not what is go­ing to hap­pen to you.’ And that’s the part that’s difficult for us in medicine, be­cause it’s not com­pletely clear.”

Clin­i­cians have learned, for ex­am­ple, that a wide spec­trum of pa­tients ex­pe­ri­ence long-term symp­toms, from those who were hos­pi­tal­ized to those who had mild bouts, from the young to the old. South­ern Con­necti­cut was hit early in the pan­demic, when the virus was over­whelm­ing the greater New York City area and rel­a­tively lit­tle was known about the course of the dis­ease.

“The symp­toms that they have span ev­ery or­gan sys­tem,” said Jen­nifer Pos­sick, the Winch­ester Ch­est Clinic’s med­i­cal di­rec­tor. “It has so many more faces than I thought it would.”

No one knows how many long­haulers there may be, al­though a Bri­tish team re­cently es­ti­mated that as many as 10 per­cent of the peo­ple who con­tract the dis­ease suf­fer pro­longed symp­toms. In July, the Cen­ters for Dis­ease Con­trol and Preven­tion re­ported that 35 per­cent of peo­ple who had mild ver­sions of covid-19 had not re­turned to their pre-dis­ease state of health two to three weeks later.

Many long-haulers have or­ga­nized on­line sup­port groups, such as Sur­vivor Corps and Body Politic, to share tips and dis­cuss symp­toms.

Chiluisa’s fam­ily moved from Ecuador to Con­necti­cut when he was 11, and he grew up in the area. He worked as an EMT, owned a bak­ery and then went back to school to be­come a CT scan tech­ni­cian at Yale New Haven Hospi­tal.

He was in the hospi­tal’s emer­gency depart­ment in early March when the virus struck the re­gion. Ex­posed to a pos­i­tive pa­tient, he came down with mild symp­toms — aches, low-grade fever and some sweat­ing, he said. By the time he could get tested, the re­sult came back neg­a­tive. Lutch­mans­ingh said she will never know whether Chiluisa was in­fected then by the novel coro­n­avirus or some other pathogen.

In May, how­ever, there was no doubt. Chiluisa awoke sweat­ing pro­fusely, with a fever of 103 de­grees. This time, he tested pos­i­tive for the coro­n­avirus.

He was hos­pi­tal­ized for seven days, five of them in in­ten­sive care, where he di­rected doc­tors not to put him on a ven­ti­la­tor, re­gard­less of how se­vere his ill­ness be­came. He feared the con­se­quences of se­da­tion and in­tu­ba­tion more than the al­ter­na­tives, he said.

In­stead, physi­cians treated him with a com­bi­na­tion of drugs: remde­sivir; tocilizuma­b, a drug used to com­bat rheuma­toid arthri­tis and other au­toim­mune dis­or­ders; con­va­les­cent plasma; a steroid; and even hy­drox­y­chloro­quine, the drug Pres­i­dent Trump er­ro­neously touted as a ther­apy for the dis­ease. The drug was later re­moved from Yale’s treat­ment reg­i­men when re­search showed it had no value and could harm pa­tients.

“The doc­tor said: ‘ We’re go­ing to give you a cock­tail. If it works, you live. If it doesn’t work, then you die,’ ” Chiluisa re­called. “And I agreed with him, be­cause I didn’t want to be in­tu­bated.”

Chiluisa’s 24-year-old son be­came in­fected as well, but his wife and two daugh­ters did not get the dis­ease.

Chiluisa re­cov­ered and was re­leased from the hospi­tal — only to be read­mit­ted for a day in June when the oxy­gen in his blood dropped to dan­ger­ously low lev­els. He was re­leased again and has con­sis­tently tested neg­a­tive, but he has never felt well.

Chiluisa seems to em­body much of the worst the virus can do. His heart races. His lungs are in­flamed. His ch­est aches and feels con­stricted. Even now, he coughs up a thick mu­cus that is be­com­ing worse de­spite a va­ri­ety of treat­ments. His sense of taste, which did not dis­ap­pear as it has in some other covid-19 pa­tients, has been al­tered.

Most omi­nously, an MRI shows that the white mat­ter of his brain is lit­tered with tiny le­sions that may be the cause of neu­ro­log­i­cal prob­lems, in­clud­ing mem­ory lapses, trou­ble con­cen­trat­ing, difficulty find­ing words and stut­ter­ing. He has in­som­nia, de­pres­sion and anx­i­ety, and other symp­toms that re­sem­ble post-trau­matic stress dis­or­der.

The brain le­sions are more com­monly found in older peo­ple, or those with un­con­trolled meta­bolic dis­or­ders such as di­a­betes or chronic high blood pres­sure, said his neu­rol­o­gist, Ar­man Fe­sharaki-zadeh. Chiluisa has no such un­der­ly­ing con­di­tions.

If the brain is a se­ries of in­ter­con­nected high­ways, each le­sion is a work zone that slows the flow of in­for­ma­tion, Fe­sharaki-zadeh said. They also may make Chiluisa prone to de­men­tia at an ear­lier age.

“For some­one with­out a his­tory of meta­bolic dis­or­der . . . for his brain to look the way it did to me was quite strik­ing,” he said. No one knows whether Chiluisa’s dys­func­tions are per­ma­nent or pro­gres­sive, or whether his brain will find new paths around the ob­sta­cles and restore his abil­ity to live and work nor­mally.

Chiluisa’s heart and lung prob­lems present other mys­ter­ies. De­spite some lin­ger­ing bac­te­ria in his lungs that have re­sisted an­tibi­otic treat­ments, Chiluisa per­forms rel­a­tively nor­mally on tests of pul­monary and car­diac func­tion.

But in­stead of pro­gress­ing, his con­di­tion has fluc­tu­ated un­pre­dictably as the months have passed. He be­comes winded and ex­hausted quickly. His blood pres­sure rises rapidly.

“He has a lot of symp­toms that are on­go­ing, that are seem­ingly sug­ges­tive of an un­der­ly­ing heart con­di­tion, but our test­ing, for the most part, has been nor­mal,” said Erica Spatz, an as­so­ciate pro­fes­sor of car­dio­vas­cu­lar medicine at the Yale School of Medicine who is Chiluisa’s car­di­ol­o­gist.

It’s pos­si­ble, she said, that the virus has dis­rupted Chiluisa’s au­to­nomic ner­vous sys­tem, which con­trols func­tions such as heart and res­pi­ra­tory rates. Or per­haps Chiluisa’s own im­mune and in­flam­ma­tory re­sponse to the vi­ral at­tack did the dam­age.

The symp­toms are prob­a­bly not per­ma­nent, Spatz said, but it’s not clear how long they may last.

“This feels very hard, be­cause we don’t know,” she said. “And we’re learn­ing as we go, and we’re learn­ing from our pa­tients and with our pa­tients about their ex­pe­ri­ences. And that’s very un­set­tling as a physi­cian, to not feel that you’re ahead.”

Sim­i­larly, Lutch­mans­ingh has no con­clu­sive ex­pla­na­tion for why Chiluisa can be­come so short of breath that he briefly put him­self on sup­ple­men­tal oxy­gen on two re­cent oc­ca­sions.

“Edi­son’s nor­mal, run-of-themill lung-func­tion test­ing is nor­mal,” she said. “But he clearly doesn’t feel well. We’ve [ex­am­ined] the usual al­ready. Now we’re go­ing to the un­usual.” She said she is ex­plor­ing whether the mus­cles that aid the lungs in res­pi­ra­tion are work­ing nor­mally.

For Chiluisa and his fam­ily, the dis­ease — along with the worry it has caused, in­clud­ing over fi­nan­cial is­sues — has be­come ex­haust­ing.

At one point in his con­va­les­cence, he said, he ran through his paid time off and Yale stopped pay­ing him. Cur­rently, the state of Con­necti­cut’s med­i­cal in­sur­ance pro­gram is pick­ing up his costs, but he be­lieves Yale will even­tu­ally have to pay the tab be­cause he was ex­posed in the work­place. Still, he frets that a fi­nan­cial bur­den will fall on him and his fam­ily.

A spokes­woman for the hospi­tal de­clined to dis­cuss Chiluisa’s em­ploy­ment his­tory.

Wor­ried about re­in­fec­tion, an ex­tremely un­likely pos­si­bil­ity, Chiluisa is also un­com­fort­able work­ing at the hospi­tal, where he cur­rently per­forms ad­min­is­tra­tive du­ties. And since he is still cough­ing, he also doesn’t like be­ing around other peo­ple. En­cour­aged by his fam­ily, he is con­tem­plat­ing an­other ca­reer change.

“Psy­cho­log­i­cally, I’m not ready. Phys­i­cally, I’m not ready,” he said. “The psy­cho­log­i­cal is even worse than the phys­i­cal part. You feel afraid, afraid to go back to the [emer­gency depart­ment].

“So my men­tal state is ‘I don’t want to die.’ Put it that way.”

STAN Godlewski FOR THE WASH­ING­TON POST

Edi­son Chiluisa is strug­gling months af­ter his bout with covid-19. Doc­tors at Yale New Haven Hospi­tal are try­ing to fig­ure out why.

PHO­TOS BY STAN GODLEWSKI FOR THE WASH­ING­TON POST

Phys­i­cal ther­a­pist Cather­ine Rives works with Ed­die Chiluisa at Yale New Haven Hospi­tal’s Winch­ester Ch­est Clinic in New Haven, Conn. Chiluisa, a 51-year-old em­ployee at the hospi­tal, is re­ceiv­ing care from a team of spe­cial­ists through the clinic’s Post-covid-19 Re­cov­ery Pro­gram. “The dis­ease, it wears on you — body, mind and spirit,” he said.

Pul­mo­nolo­gist Denyse Lutch­mans­ingh meets with a pa­tient in the post-covid-19 pro­gram. “The pa­tients are very scared,” she said.

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