SEP­SIS IS KNOWN TO OF­TEN BE A DEADLY CON­DI­TION — AND SUF­FER­ERS WERE TOLD TO JUST BE GLAD THEY SUR­VIVED. BUT FOR ONE WOMAN, WHOSE LIFE HAS BEEN PER­MA­NENTLY CHANGED, THAT’S NOT GOOD ENOUGH.

EF­FECTS OF POST-SEP­SIS SYN­DROME CAN LAST LONG AF­TER A PA­TIENT LEAVES ICU

Edmonton Journal - - NP -

Rose Stin­son was 10 weeks preg­nant with twins when she came down with a fever. She went to an emer­gency room in Mississauga, Ont., where she was given an­tibi­otics for a uri­nary tract in­fec­tion and sent home. The next day, she re­turned to the hospi­tal, where she al­most died. She spent three days in the ICU and lost both ba­bies.

Stin­son’s med­i­cal records state that she had sep­sis, a life-threat­en­ing med­i­cal com­pli­ca­tion caused by an in­fec­tion. As the body tries to fight off in­vad­ing germs, the im­mune sys­tem be­gins to at­tack it­self, caus­ing tis­sue dam­age and or­gan fail­ure.

Stin­son sur­vived, but four years later she is still suf­fer­ing. She used to run marathons, but she just got ap­proved for an elec­tric wheel­chair be­cause the lin­ger­ing ef­fects of sep­sis have left her too weak to walk long dis­tances. She can’t even make it to the end of her street with­out feel­ing like she might col­lapse.

“I al­ways feel like I’m bor­row­ing time and en­ergy from to­mor­row be­cause I’m just al­ways so ex­hausted,” Stin­son said.

“I can’t take care of my son on my own. I’m alive but I’m not liv­ing the life that I used to have.”

Stin­son has post-sep­sis syn­drome, a de­bil­i­tat­ing, yet oft-mis­un­der­stood ill­ness that per­sists long af­ter a pa­tient has left the ICU.

She suf­fers from ex­treme fa­tigue, chronic mus­cle pain, mem­ory loss, anx­i­ety and de­pres­sion. Be­fore con­tract­ing what is con­sid­ered a rou­tine in­fec­tion, she worked as a su­per­vi­sor of sales and ad­min­is­tra­tion. Now, she doubts she’ll ever be able to re­turn to work. She can barely take care of her five-yearold son.

Dr. Hal­lie Prescott, a crit­i­cal care doc­tor and sep­sis re­searcher at the Uni­ver­sity of Michi­gan, said many sur­vivors suf­fer mod­er­ate to se­vere cog­ni­tive im­pair­ment. Th­ese symp­toms are likely a re­sult of the im­mune sys­tem not re­turn­ing to nor­mal af­ter sep­sis, she said.

“Mil­lions of peo­ple now sur­vive sep­sis, but we know that a huge num­ber of th­ese peo­ple will go on to have long-term prob­lems,” Prescott said. “Most sep­sis sur­vivors will tell you they’re just never quite right again.”

Ac­cord­ing to Sta­tis­tics Canada, sep­sis kills more than 10,000 Cana­di­ans ev­ery year. (This is likely an un­der­es­ti­mate, as the ini­tial in­fec­tion is of­ten recorded as the cause of death.)

While or­ga­ni­za­tions like Sep­sis Al­liance have raised aware­ness in re­cent years about how to rec­og­nize and treat the syn­drome, less

at­ten­tion has been paid to sur­vivors — peo­ple like Stin­son who strug­gle with post-sep­sis symp­toms for months or years.

Med­i­cal pro­fes­sion­als have been slow to rec­og­nize post-sep­sis syn­drome and no sep­sis-spe­cific fol­lowup care ex­ists in Canada.

Dr. John Marshall, a pro­fes­sor of surgery at the Uni­ver­sity of Toronto, de­scribed fol­lowup care for any­one who has been in the ICU as “hap­haz­ard.”

“There isn’t a struc­tured, well-thought-out process that con­sid­ers what the par­tic­u­lar prob­lems a pa­tient is go­ing to have af­ter their ill­ness and what ex­per­tise can be brought to them,” he said.

Marshall said peo­ple who have sep­sis but never end up in the ICU prob­a­bly have even worse fol­lowup care due to an “er­ro­neous” as­sump­tion their ex­pe­ri­ence wasn’t se­vere enough to re­quire it. He said one of the main rea­sons for no sep­sis fol­lowup is that physi­cians still aren’t sure ex­actly what causes post-sep­sis syn­drome or how it man­i­fests it­self in the long term. And while other dis­eases, like can­cer, have spe­cial­ists, no “sep­sis spe­cial­ists” ex­ist in Canadian hos­pi­tals.

Marshall has re­viewed Stin­son’s case, and de­scribed her symp­toms as “strik­ing” and “dra­matic” and cer­tainly re­lated to the sep­sis she en­dured. But Stin­son said he’s one of the few peo­ple who have taken her se­ri­ously. In 2017 — three years af­ter she sur­vived sep­sis — she av­er­aged one doc­tor ap­point­ment a week. Since then, her symp­toms have barely im­proved.

“I’ve been told over and over again that it’s all just in my head, or that it’s just de­pres­sion, but I was a fully func­tion­ing per­son be­fore the sep­sis hap­pened,” she said.

Dr. Chip Doig is the head of adult crit­i­cal care medicine in the Calgary zone of Al­berta Health Ser­vices. He said it’s dif­fi­cult to of­fer pa­tients ad­vice on how to get bet­ter af­ter be­ing crit­i­cally ill be­cause there aren’t many spe­cific places he can re­fer them to for help.

“(In the fu­ture) there needs to be a mul­ti­dis­ci­plinary team, in­clud­ing psy­chol­o­gists and ther­a­pists, to help peo­ple re­cover,” he said. “It’s also im­por­tant that we have an ev­i­dence base be­fore we add th­ese new ser­vices, so we need re­search to prove that fol­lowup makes a dif­fer­ence.”

Prescott said the long­stand­ing no­tion af­ter be­ing crit­i­cally ill with some­thing like sep­sis is that if you sur­vive, you’re lucky, and you should be grate­ful.

Stin­son re­fuses to ac­cept this. The idea that a com­mon syn­drome could ruin the rest of her life is too much to bear. “I won’t stop try­ing to find help,” she said. “Be­cause I can’t imag­ine liv­ing like this for the rest of my life.”

I’M ALIVE BUT I’M NOT LIV­ING THE LIFE THAT I USED TO HAVE.

VANESSA HR­VATIN /NA­TIONAL POST

Rose Stin­son, who suf­fers from post-sep­sis syn­drome af­ter an ill­ness, re­lies on an elec­tric wheel­chair to get around.

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