Iindleko zokuPhila nge-Ulcerative Colitis: Ibali likaNyannah

Umxholo

• Ukufuna isifo
• Izilingo kunye neempazamo zonyango
• Ukuhlawulela iindleko zokhathalelo
• Ukulungiselela ikamva

Emva konyaka, uNyannah Jeffries usahlawula ityala lesibhedlele lokuqala awalifumanayo kumnqweno wakhe wokufumanisa ukuba yintoni ebangela iimpawu zesisu esibuhlungu awayehlangabezana nazo.

UNyannah utyelele isebe lakhe lengingqi yongxamiseko ngo-Okthobha u-2017 emva kokubona igazi kwigumbi lakhe. Wayengenayo i-inshurensi yezempilo ngelo xesha, ke utyelelo lwesibhedlele lwaluza kuba lixabiso.

"Kuqala ndiye kwigumbi likaxakeka, kwaye bathi ababoni nto," uxelele iHealthline, "kodwa bendifana," Hayi, ndiphulukana negazi, kwaye ndiyazi ukuba ikhona into eyenzekayo. "

Isibhedlele saqhuba iimvavanyo ezimbalwa kwi-Nyannah, kodwa asizange sifumane ukuxilongwa. Ukhutshiwe ngaphandle kwalo naliphi na iyeza, isindululo sokufumana ugqirha wamathumbu (GI), kunye netyala elingama- $ 5,000.

Kwakungekapheli iinyanga emva kokuba uNyannah efunyaniswe ene-ulcerative colitis (UC), uhlobo lwesifo samathumbu esivuthayo esibangela ukudumba kunye nezilonda ukuba zikhule ngaphakathi kwithumbu elikhulu (ikholoni).

Ukufuna isifo

UNyannah waqala waba neempawu ze-UC xa wayeneminyaka engama-20 ubudala. Wayehlala nomama wakhe kunye notatomkhulu notatomkhulu kwaye esebenza ixesha lesingxungxu njengomhlobo wentengiso kaClinque.

Ngo-Novemba ngo-2017, kwinyanga emva kotyelelo lwakhe kwisebe lezongxamiseko, watshintsha ukusuka kwikhehla ukuya kwisikhundla esisigxina emsebenzini wakhe.

Utshintsho lumenze walungela isicwangciso seinshurensi yezempilo exhaswa ngumqeshi.

"Emsebenzini, bendisebenza isigxina, kwaye bebendenza ixesha elipheleleyo," ukhumbula, "kodwa bendifuna bakhawulezise inkqubo ukuze ndibenayo i-inshurensi."

Nje ukuba afakwe i-inshurensi, uNyannah watyelela ugqirha wakhe wokuqala (PCP). Ugqirha ukrokrela ukuba iNyannah inokuba nokunganyamezelani kwe-gluten kwaye yayalela ukuba kuvavanywe igazi ukujonga isifo seCeliac. Xa ezo mvavanyo zabuya zimbi, wathumela uNyannah kwi-GI ukuze kuvavanywe ngakumbi.

I-GI iqhube i-endoscopy yokuvavanya ulungelelwaniso lwangaphakathi lwephepha le-GI laseNyannah. Oku kukhokelele ekuchongeni isifo se-UC.

Izilingo kunye neempazamo zonyango

Abantu abane-UC bahlala befumana amaxesha okuxolelwa, xa iimpawu zabo ziphela.Kodwa loo maxesha anokulandelwa yimililo yesifo xa zibuya iimpawu. Injongo yonyango kukufezekisa kunye nokugcina uxolelo ixesha elide kangangoko kunokwenzeka.

Ukunceda ukukhulula iimpawu zakhe kunye nokunyanzelisa ukuxolelwa, ugqirha waseNyannah wamisela iyeza lomlomo elaziwa ngokuba yiLialda (mesalamine) kunye namayeza ancitshisiweyo e-steroid prednisone.

"Wayenokuthambisa idosi ye-prednisone, ngokuxhomekeka kwindlela eziva ngayo iimpawu zam kunye nokuphulukana kwegazi," ucacisile uNyannah.

"Ke, ukuba ndilahlekelwa kakhulu, wayigcina kuma-50 [milligrams], kwaye emva kokuba ndiqalile ukubangcono kancinci, sakuyibeka kwi-45, emva koko i-40, ize i-35," uqhubeke watsho. "Kodwa ngamanye amaxesha xa ndisihla, ukuthanda i-20 okanye i-10, ndiye ndiphinde ndiqale ukopha kwakhona, emva koko ayibuyise kwakhona."

Xa wayethatha idosi ephezulu ye-prednisone, waba neziphumo ebezingalindelekanga, kubandakanya ukuqina komhlathi, ukudumba, kunye nokulahleka kweenwele. Wehla emzimbeni kwaye wasokola nokudinwa.

Kodwa kwiinyanga ezimbalwa, ubuncinci, ukudityaniswa kukaLialda kunye ne-prednisone kubonakala ngathi kugcina iimpawu zakhe ze-GI ziphantsi kolawulo.

Elo xesha lokuxolelwa alizange lihlale ixesha elide, nangona kunjalo. Ngo-Meyi ka-2018, uNyannah waya eNorth Carolina ngoqeqesho olunxulumene nomsebenzi. Xa ebuyela ekhaya, iimpawu zakhe zabuya nempindezelo.

Andazi nokuba kungenxa yokuhamba kwam noxinzelelo lwayo okanye yintoni, kodwa emva kokuba ndibuyile kuloo nto, ndaye ndanolunya olubi. Ingathi akukho nalinye iyeza ebendilisebenzisa ebelisebenza. ”

UNyannah kwafuneka athathe iiveki ezimbini emsebenzini ukuze achache, esebenzisa iintsuku zakhe zeholide ezihlawulelwayo.

I-GI yakhe yamkhupha eLialda kwaye yamisela inaliti ye-adalimumab (Humira), ichiza lebhayoloji elinokunceda ukunciphisa ukudumba kwikholoni.

Akakhange avelise naziphi na iziphumo ebezingalindelekanga ezivela kuHumira, kodwa ufumanise ukuba kunzima ukufunda indlela yokuzifaka ngokwakho iyeza. Isikhokelo esivela kumongikazi okhathalela ekhaya sincedile- kodwa kuphela ukuya kwinqanaba.

"Kufuneka ndizitofe rhoqo ngeveki, kwaye ekuqaleni xa kwafika inenekazi lezempilo ekhaya, bendifana nengcali," utshilo. “Bendizitofa nje. Ndandithanda, 'Hayi, ayonto imbi kangaka' Kodwa ndiyazi xa engekho, njengoko ixesha liqhubeka, ngamanye amaxesha unokuba nosuku olubi okanye usuku olubi apho udinwe khona kwaye udiniwe ingathi, 'Owu, nkosi yam, ndiyoyika ukuzitofa.' ”

"Njengokuba ndikwenzile oku njengamaxesha angama-20, ndiyayazi ukuba izakuziva njani le nto," uqhubeke wathi, "kodwa usenomkhenkce omncinci. Yiyo kuphela into. Ndifana, 'Kulungile, kufuneka nje wehle umoya, uphumle, kwaye uthathe amayeza akho.' Kuba kuya kufuneka ucinge, ekugqibeleni, oku kuzakundinceda. "

Ukuhlawulela iindleko zokhathalelo

I-Humira iyabiza. Ngokwenqaku elikwiNew York Times, i-avareji yexabiso lonyaka emva kwezaphulelo zonyukile ukusuka kwi-19,000 yeedola kwisigulana esinye ngo-2012 ukuya ngaphezulu kwe- $ 38,000 ngesigulana ngo-2018.

Kodwa ngoNyannah, iyeza ligqunywe kwinxalenye yeplani yakhe yeinshurensi yezempilo. Ukwabhalise kwinkqubo yesaphulelo semveliso, ethe yazisa iindleko ezantsi ngakumbi. Akanyanzelekanga ukuba ahlawule nantoni na epokothweni ngenxa yamayeza ukusukela oko wabetha i-inshurensi yakhe itsaliwe eyi- $ 2,500.

Nangona kunjalo, usajongane neendleko ezininzi zokuphuma epokothweni zokulawula i-UC yakhe, kubandakanya:

• $ 400 ngenyanga ngenyanga kwi-inshurensi
• I-25 yeedola ngenyanga yezongezelelo zeprobiotic
• I-12 yeedola ngenyanga ngevithamini D
• $ 50 ngokufakwa kwesinyithi xa eyifuna

Uhlawula i- $ 50 ngotyelelo lokumbona i-GI, i- $ 80 ngotyelelo ngalunye ukubona i-hematologist, kunye ne- $ 12 kuvavanyo ngalunye lwegazi abaluyalelayo.

Uhlawula i- $ 10 ngotyelelo ngalunye ukuze abone umcebisi ngempilo yengqondo, omncedayo ukuba ajongane neziphumo u-UC anazo ebomini bakhe nakwimvakalelo yokuzimela.

UNyannah kuye kwafuneka enze utshintsho kwindlela atya ngayo, naye. Ukugcina iimpawu zakhe ziphantsi kolawulo, kufuneka atye imveliso esandul 'ukutsha kunye nokutya okucutshungulweyo kunangaphambili. Oko kwandise ityala lakhe lokutya, kunye nexesha alichitha ekulungiseleleni ukutya.

Phakathi kweendleko zokulawula imeko yakhe kunye nokuhlawula iindleko zemihla ngemihla, uNyannah kufuneka enze uhlahlo-lwabiwo mali lweveki nganye ngononophelo.

"Ndiyathanda ukuxinezeleka xa kusuku lokuhlawula ngenxa yokuba ndifana," ndinokuninzi kokwenza, "watsho.

"Ke, xa ndibhatelwe, ndizama ngokwenene ukuyihlalutya," uqhubeke watsho. "Ndiyathanda, kulungile, ndingenza kuphela iidola ezili-10 ngokubhekiselele kwi-hematology namhlanje kunye ne- $ 10 ukuya kwiprayimari yam. Kodwa ndihlala ndizama ukubhatala oogqirha ekufuneka ndibabona qho, kwaye amatyala am amadala, ndingahlehlisa de itsheke elandelayo okanye ndizame ukwenza isicwangciso kunye nabo. ”

Ufunde ngendlela enzima ukuba kubalulekile ukubeka phambili amatyala oogqirha axhomekeke kukhathalelo rhoqo. Xa ehlawule ixesha lokuhlawula elinye lamatyala akhe, i-GI yakhe yamlahla njengesigulana. Kwakufuneka afune enye ukuze athathe unyango lwakhe.

Nge-Novemba, isibhedlele saqala ukuhombisa umvuzo wakhe ukuhlawula ityala kutyelelo lwakhe lokuqala olungxamisekileyo ngo-Okthobha u-2017.

"Bebenditsalela umnxeba besithi, 'Kufuneka uyihlawule le, kufuneka uyihlawule leyo,' ndlongondlongo. Kwaye ndandifana, 'Ndiyazi, kodwa ndinazo zonke ezinye iindleko. Andikwazi. Hayi namhlanje. ’Oko ngekwakundenza ndibe noxinzelelo, kwaye ke sisiphumo nje solawulo.”

Njengabantu abaninzi abane-UC, uNyannah ufumanisa ukuba uxinzelelo lunokubangela i-flare kwaye limenze abe mandundu ngakumbi.

Ukulungiselela ikamva

Ummeli wabasebenzi baseNyannah (HR) kunye nomphathi emsebenzini baye baziqonda iimfuno zakhe zempilo.

"Umphathi wam we-counter Clinique, uyandixhasa," watsho. “Uzakundiphathela iGatorade, kuba ndiphulukene neelectrolyte, kwaye ndihlala ndiqinisekisa ukuba ndiyatya. Ufana, 'Nyannah, kufuneka uye kwikhefu. Kufuneka utye into. '”

"Kwaye emva koko, njengoko benditshilo, HR yam, uswiti ngokwenene," uqhubeke watsho. Uhlala eqinisekisa ukuba ndifuna ixesha lekhefu, uyakundicwangcisela ngokufanelekileyo. Kwaye ukuba ndinexesha lokuqeshwa ngugqirha, ndihlala ndisiya kuye phambi kokuba enze iishedyuli, ke ngoko uyakwazi ukulungelelanisa kwaye alungelelanise nantoni na ayifunayo ukuze ndiye kweso sivumelwano. "

Kodwa xa uNyannah eziva egula kakhulu ukuba angaphangela, kufuneka athathe ikhefu elingahlawulelwayo.

Oko kwenza ukuba isifotho siphawule kumvuzo wakhe, sichaphazele umvuzo wakhe kangangokuba angabinakho ukuwufumana ngokulula. Ukunceda ukuziphilisa, uqalile ukukhangela umsebenzi omtsha onomvuzo ophezulu. Ukugcina i-inshurensi yezempilo kubaluleke kakhulu ekuzingeleni kwakhe umsebenzi.

Ngaphambi kokuba afake isicelo sesithuba, ujonga iwebhusayithi yenkampani ukuze afunde ngezibonelelo zabasebenzi. Unxibelelana nonxibelelwano naye eHumira okoko utshintsho kwingqesho yakhe okanye kwi-inshurensi yezempilo inokuchaphazela ukufaneleka kwakhe kwinkqubo yesaphulelo somenzi.

"Ndimele ndithethe nommeli wam waseHumira," Ucacisile, "kuba unje, 'Usafuna ukuqiniseka ukuba uyakwazi ukufumana amayeza akho kwaye uwagqume.'"

Ngomsebenzi omtsha, unethemba lokufumana imali eyoneleyo yokungahlawuli iindleko zakhe zonyango kuphela kodwa nokutyala kwikhamera kunye nezixhobo kunye noqeqesho olufunekayo ukuze akhe ikhono njengegcisa lezinto zokuhombisa.

“Ndinawo onke la matyala, kwaye kusafuneka ndibeke igesi emotweni yam ukuya nokubuya emsebenzini, kusafuneka ndithenge igrosari, ukuze ndingaphindi ndizithengele nto. Yiyo loo nto ndizama ukujonga umsebenzi omtsha, ukuze ndibenayo intwana yemali yokufumana nje izinto endizifunayo. ”

Ukwafuna ukubeka bucala ukonga ukunceda ekuhlawuleni iindleko zokhathalelo lwempilo anokulufuna kwixesha elizayo. Xa unesimo sempilo esinganyangekiyo, kubalulekile ukucwangcisa amatyala ezonyango omothusayo.

"Kuya kufuneka uthathele ingqalelo loo matyala- kwaye ayavela," ucacisile.

"Ndingathi ukuzama ukukulungiselela loo nto, ngathi, soloko uzama ukubeka into ecaleni, kuba ngekhe wazi."