Izindleko Zokuphila Ne-Hepatitis C: Indaba KaConnie

-Delile

• Ukuphatha imiphumela emibi yokwelashwa
• Ilinde ukwelashwa okusha ukuthi kutholakale
• Ukukhokhela ukunakekelwa
• Izindleko zokuhlolwa nokwelashwa
• Ukulwa nenhlamba yokutheleleka

Ngo-1992, uConnie Welch wahlinzwa esikhungweni sabagulayo eTexas. Ngokuhamba kwesikhathi uzothola ukuthi wathola igciwane lesifo sokusha kwesibindi kohlobo C kusuka enalithini engcolisiwe lapho elapho.

Ngaphambi kokuhlinzwa kwakhe, uchwepheshe ohlinzayo wathatha umjovo ethreyini yakhe yokubulala izinzwa, wazijova ngomuthi owawukuwo, wabeka isirinji ngesisombululo sikasawoti ngaphambi kokuyibuyisela phansi. Lapho kufika isikhathi sokuba uConnie alaliswe, wajova ngenaliti efanayo.

Eminyakeni emibili kamuva, wathola incwadi evela esikhungweni sokuhlinza: Uchwepheshe wayebanjwe entshontsha izinto ezidakayo kumajojo. Ubuye wahlola ukuthi une-hepatitis C engenwe yini.

I-Hepatitis C ukutheleleka ngegciwane okubangela ukuvuvukala kwesibindi nomonakalo. Kwezinye izimo ze-hepatitis C ebucayi, abantu bangalwa nokutheleleka ngaphandle kokwelashwa. Kepha ezimweni eziningi, baba ne-hepatitis C engalapheki - ukutheleleka okuhlala isikhathi eside okudinga ukwelashwa ngemithi elwa namagciwane.

Abantu abalinganiselwa ezigidini ezi-2.7 kuya kwezi-3.9 e-United States bane-hepatitis C. engapheli C. Abaningi abanazo izimpawu futhi abazi ukuthi banalo leli gciwane. UConnie wayengomunye walaba bantu.

"Udokotela wami wangishayela ucingo wangibuza ukuthi ngabe ngisitholile yini isaziso ngokwenzekile, ngathi ngiyasithola, kodwa ngadideka kakhulu ngakho," kusho uConnie etshela abeHealthline. "Ngathi, 'Bengingeke ngazi ukuthi nginesifo sokusha kwesibindi?'"

Udokotela kaConnie wamkhuthaza ukuba ayohlolwa. Ngaphansi kokuqondiswa ngudokotela wezifo zesisu kanye nodokotela we-hepatologist, uhlolwe igazi izikhathi ezintathu. Isikhathi ngasinye, wayehlolelwa ukuthi unegciwane lesifo sokusha kwesibindi kohlobo C.

Wayephinde abe ne-biopsy yesibindi. Kukhombisile ukuthi ubesevele elondoloze ukulimala kwesibindi okuncane kusuka ekutheleleni. Ukutheleleka kwe-Hepatitis C kungadala ukulimala nokulimala okungenakulungiseka esibindini, okwaziwa ngokuthi yi-cirrhosis.

Kungathatha amashumi amabili eminyaka, imishanguzo emithathu yokwelashwa ngama-antiviral, nezinkulungwane zamaRandi ezikhokhelwe ephaketheni ukususa igciwane emzimbeni wakhe.

Ukuphatha imiphumela emibi yokwelashwa

Lapho uConnie ethola ukuxilongwa kwakhe, kwakukhona kuphela ukwelashwa okulwa namagciwane kokutheleleka kwe-hepatitis C okutholakalayo. NgoJanuwari 1995, waqala ukuthola imijovo ye-non-pegylated interferon.

UConnie waba nemiphumela emibi “ebukhali kakhulu” evela emithini. Ubenenkinga yokukhathala ngokweqile, izicubu zomzimba nezokuhlangana, izimpawu zesisu, nokulahleka kwezinwele.

Uyakhumbula, “Ezinye izinsuku zazingcono kunezinye, kodwa ingxenye enkulu yazo yayinzima.”

Bekuzoba nzima ukubamba umsebenzi wesikhathi esigcwele, kusho yena. Wayesebenze iminyaka njengochwepheshe wezokwelapha ophuthumayo nomelaphi wokuphefumula. Kepha ubeseyeke ngaphambi nje kokuhlolelwa isifo sokusha kwesibindi kohlobo C, ngezinhlelo zokubuyela esikoleni ayokwenza iziqu zobunesi - amacebo awafihla ngemuva kokufunda ukuthi usethelelekile ngaleli gciwane.

Kwakunzima ngokwanele ukuphatha imisebenzi yakhe ekhaya ngenkathi ebhekana nemiphumela emibi yokwelashwa. Kwakunezinsuku lapho kwakunzima ukuvuka embhedeni, ingasaphathwa eyokunakekela izingane ezimbili. Abangani namalungu omndeni bangenelele ukusiza ngokunakekela izingane, imisebenzi yasendlini, ukuthunyelwa kweminye imisebenzi kanye neminye imisebenzi.

“Ngangiwumama wesikhathi esigcwele, futhi ngangizama ukwenza konke ekhaya kube okujwayelekile ngangokunokwenzeka esimisweni sethu, ezinganeni zethu, esikoleni, nakuyo yonke into,” uyakhumbula, “kodwa bekunezikhathi lapho bekufanele ngibe khona Usizo."

Ngenhlanhla, akazange akhokhele usizo olwengeziwe. “Besinabangani nomndeni abaningi abanomusa abasize kulolu hlobo losizo, ngakho-ke azikho izindleko zezimali ezazikhokhelwe ngalokho. Ngakubonga lokho. ”

Ilinde ukwelashwa okusha ukuthi kutholakale

Ekuqaleni, imijovo ye-non-pegylated interferon ibonakala isebenza. Kodwa ekugcineni, lowo mzuliswano wokuqala wemithi elwa namagciwane awuphumelelanga. Isibalo segciwane likaConnie sanda, isibalo sakhe se-enzyme yesibindi sanda, futhi imiphumela emibi yomuthi yaba mibi kakhulu ukuthi iqhubeke.

Njengoba zazingekho ezinye izindlela zokwelashwa ezazikhona, uConnie kwadingeka alinde iminyaka eminingana ngaphambi kokuba azame umuthi omusha.

Uqale umjikelezo wakhe wesibili wemithi elwa namagciwane ngo-2000, ethatha inhlanganisela ye-pegylated interferon ne-ribavirin ebisanda kuvunyelwa abantu abanesifo se-hepatitis C.

Lokhu kwelashwa akuphumelelanga.

Nakulokhu futhi, kwadingeka alinde iminyaka ngaphambi kokuba athole ukwelashwa okusha.

Eminyakeni eyishumi nambili kamuva, ngo-2012, waqala umjikelezo wakhe wesithathu nowokugcina wemithi elwa namagciwane. Bekubandakanya inhlanganisela ye-pegylated interferon, i-ribavirin, ne-telaprevir (Incivek).

“Kube nezindleko eziningi ezithintekayo ngoba lokho kwelashwa bekubiza kakhulu kunokwelashwa kokuqala, noma ukwelashwa kokuqala, kodwa besidinga ukwenza lokho ebesikudinga ukukwenza. Ngangibusiswe kakhulu ngokuthi ukwelashwa kube yimpumelelo. ”

Emasontweni nasezinyangeni ezilandela umjikelezo wakhe wesithathu wokwelashwa ngama-antiviral, ukuhlolwa kwegazi okuningi kukhombisile ukuthi uzuze impendulo eqhubekayo yegciwane lesandulela ngculaza (SVR). Leli gciwane lehle lafinyelela ezingeni elingabonakali egazini lakhe futhi lahlala lingabonakali. Wayelaphiwe isifo sokusha kwesibindi kohlobo C.

Ukukhokhela ukunakekelwa

Kusukela ngesikhathi ethola leli gciwane ngo-1992 kuze kube yilapho elashwa ngo-2012, uConnie nomndeni wakhe bakhokha izinkulungwane zamaRandi ephaketheni ukuze babhekane nokutheleleka kwesifo sohlobo C.

"Kusukela ngo-1992 kuya ku-2012, leso bekuyisikhathi seminyaka engama-20, futhi lokho bekubandakanya ukusebenza kwegazi okuningi, ukuhlolwa kwesibindi okubili, ukwelashwa okuhlulekile, ukuvakashelwa odokotela," kusho izindleko eziningi. ”

Lapho eqala ukuzwa ukuthi kungenzeka ukuthi wayengenwe yisifo sokusha kwesibindi kohlobo C, uConnie waba nenhlanhla yokuba nomshwalense wezempilo. Umndeni wakhe wawuthenge uhlelo lomshwalense olwaluxhaswe umqashi ngomsebenzi womyeni wakhe. Noma kunjalo, izindleko zokuphuma ephaketheni "ziqale ukwenyuka" ngokushesha.

Babekhokha cishe ama- $ 350 ngenyanga kumaphrimiyamu omshwalense futhi babedonswa imali engama- $ 500 ngonyaka, okwakudingeka bahlangane ngayo ngaphambi kokuba umhlinzeki wabo womshuwalense asize ukukhokhela izindleko zokumnakekela.

Ngemuva kokushaya imali ekhishwe minyaka yonke, uqhubeke nokubhekana nemali engu- $ 35 yamakhophi ngokuvakasha ngakunye kochwepheshe. Ezinsukwini zokuqala zokuxilongwa nokwelashwa kwakhe, wahlangana nodokotela we-gastroenterologist noma i-hepatologist kaningi kanye ngesonto.

Ngesinye isikhathi, umndeni wakhe ushintshe izinhlelo zomshuwalense, kuphela lapho ethola ukuthi i-gastroenterologist yakhe iwele ngaphandle kwenethiwekhi yabo entsha yomshuwalense.

“Satshelwa ukuthi udokotela wami wamathumbu manje uzoba kulolu hlelo olusha, kanti kuvela ukuthi wayengekho. Futhi lokho bekukhathaza kakhulu ngoba bekufanele ngithole udokotela omusha phakathi naleso sikhathi, futhi ngibe nodokotela omusha, cishe kumele uqale phansi. ”

UConnie waqala ukubona udokotela omusha wamathumbu, kepha wayenganelisekile ngokunakekelwa akunika kona. Ngakho-ke wabuyela kuchwepheshe wakhe wangaphambilini. Kwakudingeka akhokhe ephaketheni ukuze amvakashele, kuze kube yilapho umndeni wakhe ungashintsha amasu omshuwalense wokumbuyisa kwinethiwekhi yabo yokumboza.

Uthe: “Wayazi ukuthi sisenkathini yomshuwalense owawuzomkhokhela, ngakho wasinikeza isilinganiso esincishisiwe.”

"Ngifuna ukuthi ngesinye isikhathi akazange angikhokhise nakokunye ukuvakasha kwehhovisi," eqhubeka, "bese kuthi ezinye ngemuva kwalokho, wavele wangikhokhisa engangizokukhokha ngokujwayelekile nge-copay."

Izindleko zokuhlolwa nokwelashwa

Ngaphezu kwezindleko ze-copay ngokuvakashelwa udokotela, uConnie nomndeni wakhe kwakudingeka bakhokhe amaphesenti ayi-15 omthethosivivinywa kukho konke ukuhlolwa kwezokwelapha akutholayo.

Kwakudingeka ahlolwe igazi ngaphambi, phakathi nangemva nangemuva kohambo ngalunye lokwelashwa ngamagciwane. Ubuye waqhubeka nokwenza umsebenzi wegazi okungenani kanye ngonyaka iminyaka emihlanu ngemuva kokuthola i-SVR. Ngokuya ngokuhlolwa okuhilelekile, wakhokha cishe u- $ 35 kuya ku- $ 100 ngomjikelezo ngamunye womsebenzi wegazi.

UConnie ubuye wenziwa nokuhlolwa kwesibindi okubili, kanye nokuhlolwa kwesibindi sakhe ngonyaka nge-ultrasound. Ukhokhelwe cishe u- $ 150 noma ngaphezulu kuhlolo ngalunye lwe-ultrasound. Phakathi nalezo zivivinyo, udokotela wakhe ubheka izimpawu zesifo sokuqina kwesibindi nezinye izinkinga ezingaba khona.Ngisho namanje njengoba eselapheke ekungenweni yi-hepatitis C, usesengozini enkulu yokuba nomdlavuza wesibindi.

Umndeni wakhe uphinde wakhokha amaphesenti ayi-15 ezindleko zemizuliswano emithathu yokwelashwa ngama-antiviral akutholile. Umjikelezo ngamunye wezokwelapha ubiza amashumi ezinkulungwane zamaRandi esewonke, kubandakanya nengxenye ekhokhiswe kumhlinzeki wabo womshuwalense.

"Amaphesenti ayishumi nanhlanu ka-500 kungenzeka angabi mabi kangako," esho, "kepha amaphesenti ayi-15 ezinkulungwane eziningi angangeza."

UConnie nomndeni wakhe nabo babhekene namacala emithi kadokotela yokulawula imiphumela emibi yokwelashwa kwakhe. Lokhu kufaka phakathi imishanguzo yokulwa nokukhathazeka nemijovo yokukhulisa isibalo sakhe segazi elibomvu. Bakhokhele uphethiloli nokupaka ukuze baye emihlanganweni eminingi yezokwelapha. Futhi babekhokhela ukudla kwangaphambi kwesikhathi lapho egula kakhulu noma ematasa ngezikhathi zokubonana nodokotela zokupheka.

Ubuye nezindleko ezingokomzwelo, futhi.

“I-Hepatitis C ifana nokudilika echibini, ngoba kuthinta yonke indawo empilweni yakho, hhayi ngokwezimali kuphela. Kukuthinta ngokwengqondo nangokomzwelo, kanye nasemzimbeni. ”

Ukulwa nenhlamba yokutheleleka

Abantu abaningi banemibono eyiphutha mayelana nesifo sokusha kwesibindi kohlobo C, esinomthelela ocwadzini oluhambisana naso.

Isibonelo, abantu abaningi abaqapheli ukuthi okuwukuphela kwendlela umuntu adlulisa ngayo leli gciwane kungukuthintana kwegazi kuya egazini. Futhi abaningi bayesaba ukuthinta noma ukuchitha isikhathi nomuntu othole igciwane. Ukwesaba okunjalo kungaholela ekwahlulelweni okungekuhle noma ekubandlululeni abantu abahlala nakho.

Ukuze abhekane nalokhu kuhlangana, uConnie ukuthole kuwusizo ukufundisa abanye.

“Imizwa yami ilinyazwe kaningi ngabanye,” kusho yena, “kodwa empeleni, ngikuthathe njengethuba lokuphendula imibuzo abanye abantu abanayo ngaleli gciwane nokuqeda ezinye izinganekwane mayelana nokuthi litholwa kanjani nokuthi alinalo kanjani . ”

Manje usebenza njengommeli wesiguli nomqeqeshi wokuphila oqinisekisiwe, esiza abantu ukuphatha izinselelo zesifo sesibindi nokutheleleka kwe-hepatitis C. Ubuye abhalele nokushicilelwa okuningana, kufaka phakathi iwebhusayithi ebeka inkolo ayigcinayo, iLife Beyond Hep C.

Ngenkathi abantu abaningi bebhekene nezinselelo endleleni yabo yokuxilongwa nokwelashwa, uConnie ukholelwa ukuthi kunesizathu sethemba.

“Kunethemba elikhulu manje lokudlula i-hep C kunanini ngaphambili. Emuva lapho kutholakala ukuthi nganginokwelashwa okukodwa kuphela. Manje namuhla, manje sinezindlela zokwelashwa eziyisikhombisa ezehlukene zesifo sokusha kwesibindi kohlobo C kuzo zonke izakhi zofuzo eziyisithupha. ”

"Likhona ithemba ngeziguli noma ezine-cirrhosis," eqhubeka. “Sekunokuhlolwa kobuchwepheshe obusezingeni eliphezulu manje ukukwazi ukusiza iziguli ukuthi zisheshe zitholakale zinomonakalo wesibindi. Kunokuningi kakhulu manje okutholakalayo ezigulini kunakuqala. ”