Izindleko Zokuphila Ne-Ulcerative Colitis: Indaba kaJackie

-Delile

• Ukuthola ukuxilongwa
• Izindleko ‘ezethusayo’ zokunakekelwa
• Ukuphela kokukhethwa kukho
• Ukuhlinzwa okune, izinkulungwane zamadola
• Ukucela usizo
• Ingcindezi yokuhlala unomshuwalense
• Ukulindela ukubuyela emuva okulandelayo

UJackie Zimmerman uhlala eLivonia, eMichigan. Kuthatha amahora amaningana ukushayela usuka ekhaya uya eCleveland, e-Ohio - uhambo alwenza izikhathi ezingenakubalwa zokuqokwa nokuhlinzwa kodokotela.

"[Kwakungaba okungenani uhambo lwama- $ 200 njalo lapho ngiya khona, phakathi kokudla, nophethiloli, nesikhathi, nazo zonke izinto," esho.

Lolo hambo luyingxenye nje yezindleko uJackie okumele azikhokhe ukuphatha i-ulcerative colitis (UC) yakhe, isimo esingelapheki abesehlale iminyaka.

I-UC wuhlobo lwesifo samathumbu esivuthayo (i-IBD) esibangela ukuvuvukala nezilonda ukuthuthuka kulwelwesi lwangaphakathi lwamathumbu amakhulu (ikholoni). Kungadala ukukhathala, ubuhlungu besisu, ukuphuma kwegazi, nezinye izimpawu. Kungase futhi kuholele ezinkingeni ezahlukahlukene, ezinye zazo ezisongela impilo.

Ukwelapha lesi simo, uJackie nomndeni wakhe bakhokhe izinkulungwane zamaRandi kumaphrimiyamu omshwalense, ama-copay kanye nemali ebanjwayo. Bakhokhele nemali ephaketheni ngemali yokuhamba, imishanguzo yasesitolo (OTC), nezinye izindleko zokunakekelwa.

"Uma sikhuluma ngokuthi umshwalense ukhokhile, okungenani sifana nebanga lamadola ayisigidi," kusho uJackie.

“Mhlawumbe ngisezingeni lama- $ 100,000. Mhlawumbe kakhulu ngoba angicabangi ngakho konke ukudonselwa imali kukho konke ukuvakasha. ”

Ukuthola ukuxilongwa

UJackie watholakala ene-UC ngemuva kokuhlala nezimpawu zesisu (GI) cishe iminyaka eyishumi.

Uthe: “Ngangineminyaka engu-10 nginezimpawu zesilonda sikashukela ezingelapheki ngaphambi kokuba ngibonane nodokotela ngakho, kodwa ngaleso sikhathi ngangifunda esikoleni esiphakeme, futhi kwakungiphoxa.”

Ngentwasahlobo ka-2009, wabona igazi esitokisini sakhe futhi wazi ukuthi sekuyisikhathi sokubona udokotela.

Waya kuchwepheshe wendawo we-GI. Weluleke uJackie ukuthi ashintshe indlela adla ngayo futhi wabhalela izithako zokudla.

Lapho leyo ndlela ingasebenzi, wenza i-sigmoidoscopy eguquguqukayo - uhlobo lwenqubo esetshenziselwa ukuhlola i-rectum ne-colon ephansi. Wabona izimpawu zokuxoxa ze-UC.

"Ngaleso sikhathi, ngangisenkingeni," kukhumbula uJackie.

“Kwakubuhlungu ngendlela eyisimanga. Kwakungokuhlangenwe nakho okubi impela. Futhi ngiyakhumbula, ngangibeka phezu kwetafula, ububanzi buphelile, futhi wangithinta ehlombe lami, wathi, ‘Ungakhathazeki, yisifo nje sokuvuvukala kwezilonda.’ ”

Kepha yize lokho okuhlangenwe nakho kwakukubi, akukho okwakungalungiselela uJackie izinselelo ayezobhekana nazo eminyakeni ezayo.

Izindleko ‘ezethusayo’ zokunakekelwa

Ngesikhathi etholakala, uJackie wayenomsebenzi wesikhathi esigcwele. Kwakungafanele aphuthelwe umsebenzi omningi ekuqaleni. Kepha kungekudala, izimpawu zakhe zaqina, futhi wayedinga ukuthatha isikhathi esengeziwe sokuphatha i-UC yakhe.

“Ngesikhathi izinto zishuba, futhi zishesha kakhulu, bengisesibhedlela kakhulu. Ngangiku-ER mhlawumbe njalo ngesonto izinyanga. Bengihlala isikhathi eside esibhedlela, ”kuqhubeka yena,“ bengilahlekelwa umsebenzi omningi, futhi nakanjani bebengangikhokhi ngalelo khefu. ”

Ngokushesha ngemuva kokuxilongwa, udokotela we-GI kaJackie wamnikeza i-mesalamine (Asacol), isidakamizwa somlomo esisiza ukunciphisa ukuvuvukala kukholoni lakhe.

Kepha ngemuva kokuqala lo muthi, waqhamuka nenqwaba yoketshezi ezungeze inhliziyo yakhe - umphumela ongajwayelekile we-mesalamine. Kwakufanele ayeke ukusebenzisa lesi sidakamizwa, ahlinzwe inhliziyo, futhi achithe isonto lonke egumbini labagula kakhulu (i-ICU).

Leyo kwakuyinqubo yokuqala yezinqubo eziningi ezibizayo, nokuhlala esibhedlela isikhathi esingeziwe ngenxa yesimo sakhe.

"Ngaleso sikhathi, izikweletu zazivele zingena ngaphakathi. Ngangizivula bese ngihamba ngathi, 'O, lena yinde impela futhi iyesabisa,' bese ngiba ngathi, 'Yini ubuncane, yini ubuncane bami, yenkokhelo? '”

UJackie wabhalisela uhlelo lomshuwalense wezempilo oluzosiza ukukhokhela izindleko zokunakekelwa kwakhe. Lapho sekuba nzima kakhulu ukukhokhela ama-premium akhokhelwa ngenyanga angama- $ 600, abazali bakhe babengenelela bezosiza.

Ukuphela kokukhethwa kukho

UJackie ubuye abe ne-multiple sclerosis (MS), isifo esizimele esivimbela eminye yemithi angayithatha.

Ngenxa yaleyo mikhawulo, udokotela wakhe akakwazanga ukunikezela ngemithi ye-biologic efana ne-infliximab (Remicade), evame ukusetshenziselwa ukwelapha i-UC uma i-mesalamine ingekho etafuleni.

Wanikezwa i-budesonide (i-Uceris, i-Entocort EC) ne-methotrexate (i-Trexall, i-Rasuvo). Akukho neyodwa yaleyo mithi esebenza. Kubonakale sengathi ukuhlinzwa kungaba yindlela yakhe enhle kakhulu.

"Ngaleso sikhathi, bengiqhubeka nokuwohloka ngokwezempilo," engeza, "futhi kungekho lutho olusebenzayo ngokushesha, bengiqala ukukhuluma ngokubona udokotela ohlinzayo."

Yilapho kwaqala khona uhambo lukaJackie eCleveland Clinic e-Ohio. Kuzofanele eqe imigqa yombuso ukuze athole ukunakekelwa akudingayo.

Ukuhlinzwa okune, izinkulungwane zamadola

Emtholampilo waseCleveland, uJackie wayeyohlinzwa kukhishwe ikholoni kanye nengqamuzana lakhe bese kwakhiwa idamu elaziwa nge- “J-poch.” Lokhu kuzomvumela ukuthi akwazi ukugcina indle futhi ayidlulise ngokusemthethweni.

Le nqubo izoba nemisebenzi emithathu esatshalaliswe esikhathini esiyizinyanga eziyisishiyagalolunye. Kodwa ngenxa yezinkinga ezazingalindelekile, kwathatha imisebenzi emine nokwedlula unyaka ukuqeda. Wahlinzwa okokuqala ngoMashi 2010 kanti owokugcina wahlinzwa ngoJuni 2011.

Ezinsukwini ezimbalwa ngaphambi kokuhlinzwa ngakunye, uJackie wangeniswa esibhedlela ukuze ahlolwe ngaphambi kokuhlinzwa. Ubuye wahlala izinsuku ezimbalwa ngemuva kwenqubo ngayinye yokuhlolwa kokulandelwa nokunakekelwa.

Ngesikhathi sokuhlala esibhedlela ngakunye, abazali bakhe babengena ehhotela eliseduze ukuze bamsize ngenqubo. "Sikhuluma izinkulungwane zamadola esikhwameni, ukuba khona nje," kusho uJackie.

Umsebenzi ngamunye ubiza u- $ 50,000 noma ngaphezulu, iningi lawo likhokhiselwe inkampani yakhe yomshuwalense.

Umhlinzeki wakhe womshuwalense wayembekele imali ekhishwa minyaka yonke ngo- $ 7,000, kodwa engxenyeni yesibili yonyaka ka-2010, leyo nkampani yaphelelwa yibhizinisi. Kwakudingeka athole umhlinzeki ohlukile futhi athole uhlelo olusha.

“Ngonyaka owodwa kuphela, ngakhokha imali engango- $ 17,000 ephaketheni ngoba inkampani yami yomshwalense yangilahla futhi kwadingeka ngithole entsha. Bengivele sengikhokhele imali yami ebanjwayo nengaphandle kwesikhwama, ngakho-ke bekumele ngiqale phansi maphakathi nonyaka. ”

Ukucela usizo

NgoJuni 2010, uJackie waphelelwa umsebenzi.

Wayephuthelwe umsebenzi omningi kakhulu, ngenxa yokugula nokuqokwa kwezokwelapha.

"Bangangibiza ngemuva kokuhlinzwa bathi, 'Hheyi, uzobuya nini?' Futhi ayikho indlela yokuchazela abantu ongabazi," kusho yena.

“Bengingekho ngokwanele. Bebenomusa ngakho, kodwa bangixoshile, ”utshele iHealthline.

UJackie uthole ama- $ 300 ngeviki emhlomulweni wokungasebenzi, obekuyimali eningi kakhulu ukuthi angafanelekela usizo lukahulumeni - kodwa akwanele ukubhekana nezindleko zakhe zokuphila nezindleko zokunakekelwa kwezempilo.

"Ingxenye yomholo wami wanyanga zonke bekuzoba ngumshwalense wami ngaleso sikhathi," esho.

"Impela bengicela usizo emndenini wami, futhi ngibe nenhlanhla enkulu yokuthi banganginikeza, kodwa bekungumuzwa omubi impela ukuba mdala futhi kusamele ngicele abazali bakho ukuthi bakusize ukhokhe izikweletu zakho."

Ngemuva kokuhlinzwa kwakhe okwesine, uJackie waqokwa njalo eCleveland Clinic ukuqapha ukululama kwakhe. Lapho eba nokuvuvukala kwe-J-poch yakhe, inkinga ejwayelekile yokuhlinzwa ayenakho, kwakudingeka enze uhambo oluthe xaxa eCleveland ukuthola ukunakekelwa okwengeziwe kokulandela.

Ingcindezi yokuhlala unomshuwalense

Ukuhlinzwa kwenza umehluko omkhulu kwikhwalithi yempilo kaJackie. Ngokuhamba kwesikhathi, waqala ukuzizwa engcono kakhulu futhi ekugcineni wabuyela emsebenzini.

Ngentwasahlobo ka-2013, wathola umsebenzi komunye wabakhiqizi bezimoto i- “Big Three” eMichigan. Lokhu kwamvumela ukuthi alahle uhlelo lomshuwalense olubizayo ayeluthengile futhi abhalisele uhlelo olwaluxhaswe umqashi esikhundleni salokho.

“Empeleni ngathatha umshwalense wabo, umshuwalense womqashi wami, okokuqala ngqa ngoba nganginomuzwa wokuthi ngangizinzile ngokwanele ukubamba umsebenzi nokuthi ngangithemba ukuthi ngizoba khona isikhashana,” ekhumbula.

Umphathi wakhe wayeziqonda izidingo zakhe zempilo futhi wamkhuthaza ukuthi athathe ikhefu lapho edinga. Wahlala kulowo msebenzi cishe iminyaka emibili.

Ngesikhathi eshiya lowo msebenzi, wathenga umshwalense ngokushintshaniswa komshuwalense wombuso owawusungulwe ngaphansi kwe-Affordable Care Act (“Obamacare”).

Ngo-2015, waqala omunye umsebenzi enhlanganweni engenzi nzuzo. Ushintshe uhlelo lwakhe lwe-ACA kolunye uhlelo oluxhaswe ngumqashi. Lokho kusebenze kahle isikhashana, kepha wazi ukuthi akusona isixazululo sesikhathi eside.

“Ngizwe sengathi ngihlala isikhathi eside kulowo msebenzi kunalokho ebengikufuna ezintweni ezinjengomshuwalense,” kusho yena.

Wayephindele emuva nge-MS ekuqaleni kwalowo nyaka futhi wayezodinga umshwalense ukukhokha izindleko zokuphatha zombili lezi zimo.

Kodwa esimweni samanje sezepolitiki, i-ACA yazizwa ingazinzile kakhulu ukuthi uJackie angathenga olunye uhlelo lomshuwalense ngokushintshana kombuso. Lokho kushiye ukuncika kwakhe ohlelweni oluxhaswe ngumqashi wakhe.

Kwakufanele aqhubeke nokusebenza umsebenzi owawumbangela ukucindezeleka okukhulu - into engenza izimpawu ze-MS ne-UC zibe zimbi kakhulu.

Ukulindela ukubuyela emuva okulandelayo

UJackie nesoka lakhe bashada ekwindla ka-2018. Njengomlingani wakhe, uJackie wayengabhalisela uhlelo lomshuwalense olwaluxhaswe umqashi wakhe.

"Nginenhlanhla enkulu yokuthi ngikwazile ukuthola umshwalense womyeni wami, nokuthi sithathe isinqumo sokushada ngesikhathi esifanele," esho.

Lolu hlelo lumnika ukumboza akudingayo ukuphatha izimo zezempilo eziningi ezingalapheki ngenkathi esebenza njengomxhumanisi wokuzikhangisa we-digital, umbhali kanye nommeli wesiguli.

Yize izimpawu zakhe ze-GI zilawulwa njengamanje, uyazi ukuthi lokho kungashintsha noma nini. Abantu abane-UC bangathola isikhathi eside sokuxolelwa okungalandelwa yi- "flares" yezimpawu. UJackie wenza iphuzu lokonga enye yemali ayitholayo, ngokulindela ukubuyela emuva okungahle kwenzeke.

“Uhlala ufuna ukuba nesitobhisi semali lapho uzogula, ngoba futhi, noma ngabe umshwalense wakho umboza yonke into futhi kuyamangalisa, mhlawumbe awusebenzi. Ngakho-ke ayikho imali engenayo, usenezikweletu ezijwayelekile, futhi alukho usizo lweziguli oluthi ‘Ngidinga igrosa kule nyanga.’ ”

"Imali engapheli ayipheli, futhi imali iyama ngokushesha okukhulu lapho ungakwazi ukuya emsebenzini," engeza, "ngakho-ke yindawo ebiza kakhulu ukuba kuyo."