Izindleko Zokuphila Ne-Ulcerative Colitis: Indaba kaNyannah

-Delile

• Ukufuna ukuxilongwa
• Izilingo namaphutha okwelashwa
• Ukukhokhela izindleko zokunakekelwa
• Ukulungiselela ikusasa

Ngemuva konyaka, uNyannah Jeffries usakhokha imali yokuqala yesibhedlela ayithola emzamweni wakhe wokuthola ukuthi yini ebangela izimpawu ezibuhlungu zamathumbu abekade ezizwa.

UNyannah uvakashele umnyango wezimo eziphuthumayo wangakubo ngo-Okthoba 2017 ngemuva kokubona igazi esitulweni sakhe. Wayengenawo umshuwalense wezempilo ngaleso sikhathi, ngakho ukuvakashelwa esibhedlela kwakuzoba nenani elikhulu.

"Ngiqale ngaya egumbini labezimo eziphuthumayo, bathi ababoni lutho," utshele u-Healthline, "kodwa ngangithi," Cha, ngilahlekelwa yigazi, futhi ngiyazi ukuthi kukhona okwenzekayo. '”

Isibhedlela senza izivivinyo ezimbalwa eNyannah, kodwa asizange sifinyelele ekuxilongweni. Wakhishwa ngaphandle kwemithi, isincomo sokuthola udokotela wamathumbu (GI), kanye nesikweletu cishe esingu- $ 5,000.

Kwaze kwaphela izinyanga uNyannah atholakale ene-ulcerative colitis (UC), uhlobo lwesifo samathumbu esivuthayo esibangela ukuvuvukala nezilonda ukuba zikhule ngaphakathi kolwelwesi lwangaphakathi olukhulu (ikholoni).

Ukufuna ukuxilongwa

UNyannah uqale waba nezimpawu ze-UC lapho eneminyaka engu-20. Wayehlala nomama wakhe nogogo nomkhulu wakhe futhi esebenza itoho njengomlingani wokuthengisa kuClinque.

NgoNovemba 2017, inyanga elandela ukuvakasha kwakhe emnyangweni wezimo eziphuthumayo, wasuka etoho waba sesikhundleni esigcwele emsebenzini wakhe.

Ushintsho lumenze wakwazi ukuthola uhlelo lomshuwalense wezempilo oluxhaswe umqashi.

“Emsebenzini wami, ngangisebenza amatoho, futhi babengenza ngisebenze ngokugcwele,” ekhumbula, “kodwa ngangibadinga ukuthi basheshise lolu hlelo ukuze ngithole umshuwalense.”

Lapho esenomshwalense, uNyannah wavakashela udokotela wakhe oyinhloko (PCP). Udokotela usola ukuthi uNyannah angahle abe nokungabekezelelani kwe-gluten futhi wayala ukuhlolwa kwegazi ukuhlola isifo seCeliac. Lapho lezo zivivinyo zibuya zingenalo iqiniso, wabhekisa uNyannah ku-GI ukuze ahlolwe kabanzi.

I-GI yenze i-endoscopy yokuhlola ulwelwesi lwangaphakathi lwepheshana le-GI laseNyannah. Lokhu kwaholela ekutholeni ukuxilongwa kwe-UC.

Izilingo namaphutha okwelashwa

Abantu abane-UC bavame ukuhlangabezana nezikhathi zokuxolelwa, lapho izimpawu zabo zinyamalala. Kepha lezo zikhathi zingalandelwa yimililo yokusebenza kwezifo lapho kubuya izimpawu. Inhloso yokwelashwa ukufeza nokugcina ukuxolelwa isikhathi eside ngangokunokwenzeka.

Ukusiza ukukhulula izimpawu zakhe nokukhuthaza ukuxolelwa, udokotela waseNyannah wanikeza umuthi womlomo owaziwa ngokuthi yi-Lialda (mesalamine) nemithamo ye-tapered ye-steroid prednisone.

"Wayenganciphisa umthamo we-prednisone, kuya ngokuthi izimpawu zami zazizizwa kanjani nokuthi ngangilahlekelwa yigazi elingakanani," kuchaza uNyannah.

"Ngakho-ke, uma ngilahlekelwa kakhulu, wayekugcina kuma-milligram angama-50, bese kuthi lapho sengiqala ukuba ngcono kancane, sasikwehlisa sifike ku-45, bese kuba ngu-40, bese kuba ngu-35," eqhubeka, "Kodwa kwesinye isikhathi njengoba ngangincipha, ukuze ngithande u-20 noma u-10, bese ngiqala ukopha futhi, bese ebuyisa."

Ngenkathi ethatha imithamo ephezulu ye-prednisone, waba nemiphumela emibi ebonakalayo, ehlanganisa ukuqina komhlathi, ukuqunjelwa, nokulahleka kwezinwele. Wehla emzimbeni futhi walwa nokukhathala.

Kepha izinyanga ezimbalwa, okungenani, ukuhlanganiswa kukaLialda no-prednisone kubonakale kugcina izimpawu zakhe ze-GI zilawulwa.

Leso sikhathi sokuxolelwa asihlalanga isikhathi eside, noma kunjalo. NgoMeyi 2018, uNyannah waya eNorth Carolina ukuqeqeshwa okuhlobene nomsebenzi. Lapho ebuyela ekhaya, izimpawu zakhe zabuya nempindiselo.

“Angazi noma bekungenxa yokuthi ngangihamba nje nengcindezi yalokho noma yini, kodwa ngemuva kokuthi ngibuya kulokho, ngaba nokuqubuka okubi. Kufana nokuthi akukho muthi ebengiwuphuza obusebenza. ”

UNyannah kwakudingeka athathe amasonto amabili emsebenzini ukuze alulame, esebenzisa izinsuku zakhe zeholide ezikhokhelwayo.

I-GI yakhe yamkhipha eLialda futhi yamfaka imijovo ye-adalimumab (Humira), umuthi we-biologic ongasiza ukunciphisa ukuvuvukala kukholoni.

Akakabi nayo imiphumela emibi evela kuHumira, kodwa ukuthole kuwubuqili ukufunda ukuthi ungazifaka kanjani umuthi ngokwakho. Ukuqondiswa ngumhlengikazi onakekela ikhaya kusizile - kepha kuze kube seqophelweni.

"Kumele ngizijoje njalo ngesonto, futhi okokuqala lapho kufika intokazi yezempilo ekhaya, ngangifana nochwepheshe," esho. “Bengizijove nje. Bengithi, 'O, lokhu akukubi kangako.' Kepha ngiyazi ukuthi uma engekho, njengoba isikhathi siqhubeka, kwesinye isikhathi ungahle ube nosuku olubi noma usuku olubi lapho ukhathele nje futhi ngathi, 'Hawu, nkosi yami, nginovalo lokuzijova.' ”

"Njengoba sengikwenze lokhu njengezikhathi ezingama-20, ngiyazi ukuthi lokhu kuzoba njani," eqhubeka, "kepha usathola iqhwa elincane. Yilokho kuphela into. Ngifana nokuthi, ‘KULUNGILE, ngivele ngehlise umoya, ngiphumule, ngiphuze umuthi wakho.’ Ngoba kuzofanele ucabange, ekugcineni, lokhu kuzongisiza. ”

Ukukhokhela izindleko zokunakekelwa

I-Humira iyabiza. Ngokwesihloko esikwiNew York Times, inani lentengo elijwayelekile ngemuva kwezaphulelo lenyuke lisuka cishe ku- $ 19,000 ngesiguli ngasinye ngo-2012 laya ngaphezu kwama- $ 38,000 ngesiguli ngasinye ngo-2018.

Kepha ngoNyannah, lesi sidakamizwa sihlanganiswa ingxenye yohlelo lwakhe lomshuwalense wezempilo. Ubhalise futhi ohlelweni lwesaphulelo sabakhiqizi, olwehlisele izindleko phansi. Akakaze akhokhe lutho ephaketheni ngemithi selokhu ashaya imali yakhe yomshwalense engu- $ 2,500.

Noma kunjalo, usabhekene nezindleko eziningi ezingaphandle kwesikhwama zokuphatha i-UC yakhe, kufaka phakathi:

• $ 400 ngenyanga kumaphrimiyamu omshwalense
• $ 25 ngenyanga ngezithasiselo ze-probiotic
• $ 12 ngenyanga ngezithasiselo zikavithamini D
• $ 50 ukumnika insimbi lapho eyidinga

Ukhokha u- $ 50 ngokuvakasha ukuyobona i-GI yakhe, ama- $ 80 ngokuvakasha ukubona i-hematologist, ne- $ 12 ngokuhlolwa kwegazi ngakunye abaku-oda.

Ubuye akhokhe u- $ 10 ngokuvakasha ukubona umeluleki wezempilo yengqondo, omsizayo ukuba abhekane nemiphumela u-UC abe nayo empilweni yakhe kanye nokuzizwa kwakhe.

UNyannah kuye kwadingeka enze izinguquko ekudleni kwakhe, futhi. Ukugcina izimpawu zakhe zilawulwa, kufanele adle umkhiqizo omusha nokudla okucutshungulwe kancane kunangaphambili. Lokho kwandise imali yakhe yokudla, kanye nesikhathi asichitha elungisa ukudla.

Phakathi kwezindleko zokuphatha isimo sakhe nokuhlanganisa izindleko zokuphila kwansuku zonke, uNyannah kufanele enze isabelomali seholo lesonto ngalinye ngokucophelela.

"Ngiye ngibe nengcindezi uma sekuwusuku lokuhola ngoba ngifana nokuthi," Kuningi okumele ngikwenze, "esho.

“Ngakho-ke, uma ngikhokhelwa, ngiyazama ngempela ukukuhlaziya,” eqhubeka. “Ngifana, KULUNGILE, ngingenza kuphela u- $ 10 maqondana ne-hematology namuhla ne- $ 10 ngiya e-primary yami. Kodwa ngihlala ngizama ukukhokhela odokotela okufanele ngibonane nabo njalo, futhi izikweletu zami ezindala, ngingahlehlisa kuze kufike isheke elilandelayo noma ngizame ukuhlela isu nabo. ”

Ufunde kanzima ukuthi kubalulekile ukubeka phambili izikweletu ezivela kodokotela ancike kuzo ukunakekelwa okujwayelekile. Lapho ephuze ukukhokha enye yezikweletu zakhe, i-GI yakhe yamlahla njengesiguli. Kwakumele athole enye ezothatha imishanguzo yakhe.

NgoNovemba, isibhedlela saqala ukuhlobisa umholo wakhe ukukhokha isikweletu ekuvakasheni kwakhe okuphuthumayo kokuqala ngo-Okthoba 2017.

"Bangishayela ucingo bethi, 'Udinga ukukhokha lokhu, udinga ukukhokha lokho,' abanolaka ngokwengeziwe. Futhi bengifana nokuthi, ‘Ngiyazi, kodwa nginawo wonke amanye amabhili. Angikwazi. Hhayi namuhla. ’Lokho-ke kungenza ngibe nengcindezi, ngakho-ke kumane nje kungumphumela wobukhosi.”

Njengabantu abaningi abane-UC, uNyannah uthola ukuthi ingcindezi ingadala ukuvutha futhi yenze izimpawu zakhe zibe zimbi kakhulu.

Ukulungiselela ikusasa

Omele abasebenzi baseNyannah (HR) kanye nemenenja emsebenzini bebelokhu beqonda izidingo zakhe zezempilo.

"Umphathi wami we-counter Clinique, uyangisekela kakhulu," esho. “Wayengilethela iGatorade, ngoba ngilahlekelwa ngama-electrolyte, futhi ngaso sonke isikhathi wenza isiqiniseko sokuthi ngiyadla. Ufana nokuthi, ‘Nyannah, udinga ukuya ekhefini. Udinga ukudla okuthile. ’”

"Futhi-ke, njengoba ngishilo, i-HR yami, muhle impela," eqhubeka. “Uhlala enza isiqiniseko sokuthi uma ngidinga isikhathi sokuphumula, uzongihlelela kahle. Futhi uma nginezikhathi zokubonana nodokotela, ngihlala ngiya kuye ngaphambi kokuba enze amashejuli, ngakho-ke uyakwazi ukudidiyela nokulungisa noma yini ayidingayo ukuze ngiye kuleso sikhathi. ”

Kepha lapho uNyannah ezizwa egula kakhulu ukuthi angasebenza, kufanele athathe ikhefu elingakhokhelwa.

Lokho kwenza isifaca esibonakalayo emholweni wakhe wokukhokha, kuthinte umholo wakhe kuze kube sezingeni angenakukwazi ukulikhokhela kalula. Ukusiza ukuziphilisa, useqale ukufuna umsebenzi omusha ngeholo eliphakeme. Ukugcina umshuwalense wezempilo kuyinto ehamba phambili ekuzingeleni kwakhe umsebenzi.

Ngaphambi kokuthi afake isicelo sesikhundla, ubheka iwebhusayithi yenkampani ukuze afunde ngezinzuzo zayo zabasebenzi. Ubuye axhumane nokuxhumana kwakhe noHumira kwazise ushintsho emsebenzini wakhe noma umshuwalense wezempilo kungenzeka luthinte ukufaneleka kwakhe kohlelo lwesaphulelo sabakhiqizi.

"Kumele ngikhulume nenxusa lami laseHumira," echaza, "ngoba ufana nokuthi, 'Usafuna ukwenza isiqiniseko sokuthi uyakwazi ukuthola umuthi wakho bese uwumboza.'"

Ngomsebenzi omusha, unethemba lokuthola imali eyanele yokungagcini ngokukhokhela izindleko zakhe zokwelashwa kuphela kodwa futhi nokutshala kukhamera namathuluzi nokuqeqeshwa akudingayo ukwakha umsebenzi wokuba ngumculi wezimonyo.

“Nginazo zonke lezi zikweletu, bese kusadingeka ngifake uphethiloli emotweni yami ukuze ngiye noma ngibuyele emsebenzini, kusamele ngithenge igilosa, ngakho-ke angisazithengi lutho. Ngakho-ke yingakho ngizama ukubheka umsebenzi omusha, ukuze nje ngibe nemadlana ethe xaxa yokuthola nje izinto engizidingayo. ”

Ufuna nokubeka eceleni imali ethile ezosiza ukukhokhela izindleko zokunakekelwa kwezempilo angazidinga ngokuzayo. Uma unesimo sempilo esingapheli, kubalulekile ukuhlela izindleko zezokwelapha ezingalindelekile.

"Kumele ubheke lezo zikhokhelo - futhi ziyavela," kuchaza yena.

"Ngingazama ukuzama ukukulungiselela lokho, njengokuthi, zama njalo ubeke okuthile eceleni, ngoba awazi."