Iindleko zokuPhila nge-Ulcerative Colitis: Ibali likaJackie

Umxholo

• Ukufumana isifo
• Iindleko ‘ezoyikisayo’ zokhathalelo
• Ukuqhuba phantsi kukhetho
• Uqhaqho ezine, amawaka eedola
• Ukucela uncedo
• Uxinzelelo lokuhlala une-inshurensi
• Ukulindela ukubuyela kwakhona okulandelayo

UJackie Zimmerman uhlala eLivonia, eMichigan. Kuthatha iiyure ezininzi ukuqhuba ukusuka ekhayeni lakhe ukuya eCleveland, eOhio - uhambo awalwenza izihlandlo ezingenakubalwa zokuqeshwa nonyango.

"[Kwakunokuba ubuncinci uhambo lwama- $ 200 ngalo lonke ixesha ndisiya khona, phakathi kokutya, kunye negesi, kunye nexesha, nazo zonke izinto," utshilo.

Olo hambo luyinxalenye nje yenkcitho uJackie ekufuneka eyihlawule ukulawula ulcerative colitis (UC), imeko engapheliyo ahlala nayo iminyaka.

I-UC luhlobo lwesifo samathumbu esivuthayo (i-IBD) esibangela ukudumba kunye nezilonda ukuba zikhule ngaphakathi kulusu lwangaphakathi olukhulu (ikholoni). Inokubangela ukudinwa, iintlungu zesisu, ukuphuma kwegazi, kunye nezinye iimpawu. Inokukhokelela kwiingxaki ezahlukeneyo, ezinye zazo zisongela ubomi.

Ukunyanga le meko, uJackie kunye nosapho bakhe bahlawule amawaka eedola kwiipremiyamu ze-inshurensi, ii-copays kunye nezokutsalwa. Baye bahlawula imali epokothweni yokuhamba, amayeza e-over-the-counter (OTC), kunye nezinye iindleko zononophelo.

"Ukuba sithetha nge-inshurensi ehlawulelweyo, ubuncinci sifana noluhlu lwezigidi zeedola," utshilo uJackie.

“Mhlawumbi ndikuluhlu lwama- $ 100,000. Mhlawumbi ngenxa yokuba andicingi ngazo zonke izinto ezitsalwayo kutyelelo ngalunye. "

Ukufumana isifo

UJackie wafunyaniswa ene-UC emva kokuhlala neempawu zesisu (GI) isithuba esimalunga neshumi leminyaka.

"Ndandinenyani yokuba ne-ulcerative colitis iimpawu kangangesithuba seminyaka eli-10 ngaphambi kokuba ndibone ugqirha ngayo," watsho, "kodwa ngelo xesha, ndandisesikolweni samabanga aphakamileyo, kwaye kwakulihlazo."

Ngentwasahlobo ka-2009, wabona igazi kwisitulo sakhe kwaye wazi ukuba lixesha lokuba abonane nogqirha.

Waya kwingcali ye-GI yendawo. Ucebise uJackie ukuba atshintshe indlela atya ngayo kwaye amisele nezinye izongezo zokutya.

Xa loo ndlela ingasebenzi, waqhuba i-sigmoidoscopy eguqukayo- uhlobo lwenkqubo esetyenziselwa ukuvavanya i-rectum kunye ne-colon esezantsi. Wabona imiqondiso ye-UC.

"Ngelo xesha, ndandisentanyeni," ukhumbula uJackie.

“Kwakubuhlungu ngendlela engathethekiyo. Yayingamava amabi ngokwenene. Kwaye ndiyakhumbula, ndandilele phezu kwetafile, isithuba sasigqityiwe, kwaye wandibamba egxalabeni, wathi, 'Ungakhathazeki, sisifo nje sokudumba okwenziwa sisilonda sikabhobhosi.' ”

Kodwa ke njengokuba la mava ayesoyikeka, akukho nto yayinokulungiselela uJackie kwimiceli mngeni awayeza kujongana nayo kule minyaka izayo.

Iindleko ‘ezoyikisayo’ zokhathalelo

Ngexesha lokufunyanwa kwakhe, uJackie wayenomsebenzi osisigxina. Kwakungekho mfuneko yokuba aphoswe ngumsebenzi omninzi ekuqaleni. Kodwa kungekudala, iimpawu zakhe zaqina, kwaye kwafuneka athathe ixesha elingakumbi lokulawula i-UC yakhe.

"Njengoko izinto zazixakekile, kwaye yenze ngokukhawuleza okukhulu, ndandisesibhedlele kakhulu. Ndaye kwi-ER mhlawumbi ngeveki ngeenyanga. Ndihleli ixesha elide esibhedlele, uqhubeke wathi, “bendiphulukene nomsebenzi omninzi, kwaye bebengandibhatali ngeloxesha lokuphumla.”

Kungekudala emva kokuxilongwa, ugqirha we-GI kaJackie wammisela i-mesalamine (Asacol), ichiza lomlomo lokunceda ukunciphisa ukudumba kwikholoni yakhe.

Kodwa emva kokuqalisa iyeza, wakhula ulwelo olwalujikeleze intliziyo yakhe-isiphumo esinqabileyo se-mesalamine. Kwafuneka ayeke ukusebenzisa eli chiza, wenza utyando lwentliziyo, kwaye wachitha iveki kwigumbi labagula kakhulu (ICU).

Leyo yayiyinkqubo yokuqala yeendleko ezininzi, kunye nokuhlala esibhedlele ixesha elide wayeya kuba ngenxa yemeko yakhe.

"Ngelo xesha, iibhilikhwe zazingohlobo nje lokungena. Ndiza kuyivula ndize ndiye nje," Owu, le inde kakhulu kwaye yoyikisa, 'emva koko ube ngathi,' Yintoni encinci, yintoni ubuncinci bam, Intlawulo? '”

UJackie ubhalise kwisicwangciso seinshurensi yezempilo eya kuthi incede ekuhlawuleni iindleko zokhathalelo lwakhe. Xa kwakunzima ukuhlawula iipremiyamu zakhe zenyanga ezingama- $ 600, abazali bakhe babeza kungenelela bancede.

Ukuqhuba phantsi kukhetho

UJackie une-multiple sclerosis (MS), isifo esizenzekelayo esinciphisa amanye amayeza anokuwathatha.

Ngenxa yezo zithintelo, ugqirha wakhe akakwazanga ukumisela amachiza e-biologic anjenge-infliximab (Remicade), ahlala esetyenziselwa ukunyanga i-UC ukuba i-mesalamine ayikho etafileni.

Waye waqeshwa i-budesonide (Uceris, Entocort EC) kunye ne-methotrexate (Trexall, Rasuvo). Akukho namnye kula mayeza asebenzayo. Kubonakala ngathi utyando kunokuba lolona khetho lwakhe.

"Ngelo xesha, bendiqhubeka nokuhla ngokwempilo," wongeze watsho, "kwaye kungekho nto isebenza ngokukhawuleza, bendiqala ukuthetha ngokubona ugqirha wotyando."

Yilapho uhambo lukaJackie oluya kwiKliniki yaseCleveland eOhio lwaqala. Kuya kufuneka awele imigca yelizwe ukuze afumane ukhathalelo alifunayo.

Uqhaqho ezine, amawaka eedola

KwiKlinikhi yaseCleveland, uJackie wayeza kwenziwa utyando ukuze kususwe ikholon kunye ne-rectum yakhe idama elibizwa ngokuba yi "J-poch". Oku kuyamvumela ukuba agcine isitulo kwaye ayidlulise nge-anally.

Inkqubo iya kubandakanya imisebenzi emithathu ethe saa kwisithuba seenyanga ezilithoba. Kodwa ngenxa yeengxaki ezingalindelekanga, kwathatha imisebenzi emine nangaphezulu konyaka ukugqiba. Waqala ukusebenza ngo-Matshi 2010 kwaye okokugqibela ngoJuni ka-2011.

Kwiintsuku ezininzi phambi kotyando ngalunye, uJackie wangeniswa esibhedlele kuvavanyo lwangaphambi kokusebenza. Uye wahlala iintsuku ezimbalwa emva kwenkqubo nganye yovavanyo lokulandela kunye nokhathalelo.

Ngexesha lokuhlala kwesibhedlele ngasinye, abazali bakhe bajonga kwihotele ekufuphi ukuze bakwazi ukumnceda kule nkqubo. "Sithetha amawaka eedola epokothweni, ukubakhona nje," utshilo uJackie.

Umsebenzi ngamnye waxabisa i-50, 000 yeedola okanye nangaphezulu, uninzi lwayo lwaluhlawulwa kwinkampani yeinshurensi yakhe.

Umboneleli wakhe weinshurensi wayemmisele ukuba athabathe i-7 000 yeedola ngonyaka, kodwa kwisiqingatha sesibini sonyaka ka-2010, loo nkampani yaphuma ishishini. Kwakufuneka afumane umboneleli owahlukileyo kwaye afumane isicwangciso esitsha.

“Ngunyaka owodwa kuphela, ndakhupha imali eyi-17 000 yeedola epokothweni kuba inkampani yam yeinshurensi yandiwisa kwaye kwafuneka ndifumane entsha. Besele ndihlawule imali yam exhuzulweyo kwaye iphume epokothweni, ke kuye kwafuneka ndiqale phakathi enyakeni. ”

Ukucela uncedo

NgoJuni ka-2010, uJackie waphulukana nomsebenzi.

Wayephulukene nomsebenzi omninzi, ngenxa yokugula kunye nokuqeshwa kwezonyango.

"Baza kunditsalela umnxeba emva kotyando kwaye bathi," Heyi, uza kubuya nini? Kwaye akukho ndlela yokwenyani yokuchazela abantu ongabaziyo, "utshilo.

“Bendingekho ngokwaneleyo. Babenobubele ngayo, kodwa bandigxotha, utshilo uxelele iHealthline.

UJackie wafumana i-300 yeedola ngeveki kwizibonelelo zokungaphangeli, eyayiyimali eninzi kakhulu kuye ukuba afanelekele uncedo lukarhulumente-kodwa ayonelanga ukuhlawula iindleko zakhe zokuphila kunye neendleko zonyango.

"Isiqingatha somvuzo wam wenyanga ngesele iyintlawulo yeinshurensi yam ngelo xesha," utshilo.

"Ngokuqinisekileyo bendicela uncedo kusapho lwam, kwaye ndinethamsanqa lokuba bangakwazi ukulubonelela, kodwa ibiyinto embi ukuba ngumntu omdala kwaye kufuneka ndicele abazali bakho bakuncede ekuhlawuleni amatyala akho."

Emva kotyando lwesine, uJackie wayeqeshwa rhoqo kwiklinikhi yaseCleveland ukuze abeke iliso ekubuyiseni kwakhe. Xa eqala ukudumba iJ-poch yakhe, ingxaki eqhelekileyo yoqhaqho awayenalo, kwafuneka enze uhambo olongezelelekileyo eCleveland ukuze anyanyekelwe.

Uxinzelelo lokuhlala une-inshurensi

Ugqirha lwenze umahluko omkhulu kubomi bukaJackie. Ngokuhamba kwexesha, waqala waziva engcono kwaye ekugqibeleni wabuyela emsebenzini.

Ngentwasahlobo ka-2013, wafumana umsebenzi komnye wabavelisi bezimoto "Abakhulu abathathu" eMichigan. Oku kwamvumela ukuba alahle isicwangciso seinshurensi ebizayo awayesithengile kwaye abhalise kwisicwangciso esixhaswe ngumqeshi endaweni yoko.

"Ndithathe i-inshurensi yabo, i-inshurensi yomqeshi wam, okokuqala kuba ndiziva ngathi ndizinzile ngokwaneleyo ukuba ndingabamba umsebenzi kwaye ndinethemba lokuba ndiza kubakho okwexeshana," ukhumbule.

Umphathi wakhe wayeziqonda iimfuno zakhe zempilo kwaye wamkhuthaza ukuba athathe ikhefu xa efuna njalo. Wahlala kuloo msebenzi kangangeminyaka emibini.

Ukuphuma kwakhe kuloo msebenzi, wathenga i-inshurensi ngotshintsho lweinshurensi karhulumente olwalusekwe phantsi komThetho woNonophelo ongenakufikeleleka (“Obamacare”).

Ngo-2015, waqala omnye umsebenzi kumbutho ongajonganga kwenza nzuzo. Watshintsha isicwangciso sakhe se-ACA kwesinye isicwangciso esixhaswe ngumqeshi. Oko kusebenze kakuhle okwethutyana, kodwa wayesazi ukuba ayisosisombululo sexesha elide.

"Ndaziva ngathi ndihlala ixesha elide kulo msebenzi kunokuba ndifuna izinto ezifana neinshurensi," utshilo.

Wayephindile kwi-MS kwangoko kulo nyaka kwaye wayeza kufuna i-inshurensi yokuhlawula iindleko zokulawula zombini iimeko.

Kodwa kwimeko yezopolitiko yangoku, i-ACA yaziva ingazinzanga kakhulu ukuba uJackie athenge esinye isicwangciso seinshurensi ngotshintsho lukarhulumente. Oko kumshiye exhomekeke kwisicwangciso esixhaswe ngumqeshi wakhe.

Kwakufuneka aqhubeke nokusebenza umsebenzi owawumbangela uxinzelelo olukhulu-into enokwenza ukuba iimpawu ze-MS kunye ne-UC zibe mandundu.

Ukulindela ukubuyela kwakhona okulandelayo

UJackie kunye nesoka lakhe batshata ekwindla ka-2018. Njengomlingane wakhe, uJackie angabhalisa kwisicwangciso sakhe seinshurensi esixhaswe ngumqeshi.

"Ndinethamsanqa lokuba ndikwazile ukufumana i-inshurensi yomyeni wam, ukuba sithathe isigqibo sokutshata kanye ngexesha elifanelekileyo," utshilo.

Esi sicwangciso simnika ukhuselo aludingayo lokulawula iimeko ezininzi zempilo engapheliyo ngelixa esebenza njengomcebisi wentengiso yedijithali ozimeleyo, umbhali kunye nommeli wesigulana.

Nangona iimpawu zakhe ze-GI ziphantsi kolawulo, uyazi ukuba inokutshintsha nangawuphi na umzuzu. Abantu abane-UC banokufumana ixesha elide lokuxolelwa elinokuthi lilandelwe "ziiflare" zeempawu. UJackie wenza inqaku lokugcina enye yemali ayifumeneyo, ngolindelo lokuphinda abuye.

"Usoloko ufuna ukuba nesitepsi semali xa ugula, kuba kwakhona, nokuba i-inshurensi yakho iyayigubungela yonke into kwaye iyamangalisa, mhlawumbi awusebenzi. Ke akukho mali ingena, usenamatyala rhoqo, kwaye akukho ncedo lwesigulana 'Ndifuna ukutya kule nyanga.' ”

"Imali ephumayo ayinakuphela, kwaye imali iyema ngokukhawuleza xa ungeke ukwazi ukuya emsebenzini," wongeze watsho, "ke yindawo ebiza kakhulu ukuba ibe yiyo."