Izindleko Zokuphila Ne-Ulcerative Colitis: Indaba kaMeg

-Delile

• Ukuthola ukuxilongwa nokwelashwa
• Ukuhlolwa okuqhubekayo nokwelashwa
• Ukuziphilisa

Kuyaqondakala ukuzizwa ungakulungele ngemuva kokutholakala ukuthi unesifo esingelapheki. Ngokungazelelwe, impilo yakho iyabanjwa futhi izinto eziza kuqala kuwe ziyashintsha. Impilo yakho nenhlala-kahle yakho kugxile kuwe kakhulu futhi namandla akho anikelwe ekutholeni ukwelashwa.

Uhambo oluya ekuphulukisweni alukaze lube lula, futhi kungenzeka ukuthi uzohlangabezana nezithiyo ezimbalwa endleleni. Esinye salezo zithiyo, yiqiniso, ukuthi ungazikhokha kanjani izindleko zokuphatha isimo esingelapheki.

Ngokuya ngezimo zakho, ungaba nomshuwalense wezempilo nemali eyanele yokukhokhela ukwelashwa kwakho ngaphandle kokukhathazeka kakhulu.

Noma, kungenzeka ukuthi uphakathi neminyaka engama-20, awuqinisekisiwe, usesikoleni, futhi usebenza itoho ngama- $ 15 ngehora. Yilokhu okwenzeka kuMeg Wells.

Kwakungu-2013 futhi uMeg wayesanda kuqala uhlelo lwe-master eSonoma State University. Ubefundela ukuphathwa kwezinsizakusebenza, enethemba lokuthi ngelinye ilanga uzosebenza emnyuziyamu onomlando njengomqaphi.

UMeg wayeneminyaka engama-26, ehlala yedwa, futhi esebenza itoho. Wayenemali nje eyanele yokukhokhela irenti nemali ehlukahlukene yesikole. Kepha umhlaba wakhe wawuzothatha ushintsho olukhulu.

Isikhathi esithile, uMeg ubelokhu ehlangabezana nezinto ezinjengokugaya okubi, igesi nokukhathala. Wayematasa ngomsebenzi nezifundo zokuthweswa iziqu, ngakho-ke wakubekelisa ukuya kudokotela.

NgoNovemba ka-2013, noma kunjalo, izimpawu zakhe zesaba kakhulu ukungazinaki.

Uthe: “Bengizogeza kakhulu, futhi kulapho-ke ngiqale khona ukubona igazi, futhi bengithi, KULUNGILE, kukhona okungahambi kahle ngempela.”

I-Ulcerative colitis (UC) uhlobo lwesifo samathumbu esivuthayo (IBD) esibangela ukuvuvukala nezilonda ukukhula emathunjini amakhulu. Ezimweni eziningi, lesi sifo sikhula kancane futhi siba sibi ngokuhamba kwesikhathi.

Imbangela ngqo yalesi simo ayaziwa, kodwa abacwaningi bakholelwa ukuthi izakhi zofuzo, izici zemvelo, namasosha omzimba asebenza ngokweqile angabamba iqhaza.

Igazi esitokisini uphawu oluvamile lwe-UC. Lapho uMeg eqaphela igazi, wayazi ukuthi sekuyisikhathi sokuthola usizo.

UMeg wayengenawo umshuwalense wezempilo ngaleso sikhathi. Kwakudingeka akhokhe amakhulu amadola ephaketheni ngakho konke ukuvakashelwa ngodokotela, ukuhlolwa kwegazi, kanye nokuhlolwa kwesitokisi okwakuthatha izimbangela ezivamile zezimpawu zakhe.

Ngemuva kokuvakashelwa kaningi, ithimba lakhe lokunakekelwa kwezempilo likwazile ukunciphisa imbangela yezimpawu zakhe ku-UC, isifo sikaCrohn, noma umdlavuza wekoloni.

Omunye wodokotela bakhe wasikisela ukuthi kungaba ukuhlakanipha ukulinda aze abe nomshwalense wezempilo ngaphambi kokuthatha isinyathelo esilandelayo - i-colonoscopy. Le nqubo ingabiza kuze kufike ku- $ 4,000 ngaphandle kokutholakala komshuwalense.

Ngomzuzwana wokuphelelwa yithemba, wathenga uhlelo lomshuwalense wezempilo kumthengisi. Kepha lapho efunda ukuthi ngeke ihlanganise noma yiziphi izinsizakalo zezempilo esifundeni sakhe, kwadingeka ukuthi akhansele uhlelo.

"Ngemuva kwalokho, abazali bami bathatha izintambo ngoba ngangigula kakhulu ukuthi ngingabhekana nakho," kusho uMeg. “Ngaleso sikhathi, ngangivele ngopha futhi ngisezinhlungwini ezinzima.”

Ukuthola ukuxilongwa nokwelashwa

Ekuqaleni kuka-2014, uMeg wabhalisa ohlelweni lomshwalense wezempilo weSilver 70 HMO ngoKaiser Permanente ngosizo lomndeni wakhe. Ukugcina ukumbozwa, ukhokha amaphrimiyamu ka- $ 360 ngenyanga. Leli zinga lizokhuphukela ku- $ 450 ngenyanga ngo-2019.

Unesibopho sokukhokhiswa kwe-copay noma i-coinsurance emithini yakhe eminingi, ukuvakashelwa odokotela, izinqubo zokugula, ukunakekelwa kweziguli, nokuhlolwa kwelebhu. Kuphela kuphela kwalawo macala abalwa ukuthi akhokhelwe imali yakhe yonyaka yokuvakasha nokuhlolwa ngodokotela, okungama- $ 2,250. Umhlinzeki wakhe womshuwalense ubuye abeke inani eliphakeme lonyaka lokusetshenziswa kwemali ephaketheni lokuhlala esibhedlela, okungama- $ 6,250 ngonyaka.

Ngomshuwalense wezempilo esandleni, uMeg uvakashele uchwepheshe wamathumbu (GI). Wathola i-colonoscopy kanye ne-end GI endoscopy ephezulu futhi kwatholakala ukuthi une-UC.

Ezinyangeni ezimbalwa kamuva, wathuthela ekhaya wayohlala nabazali bakhe eVacaville, eCalifornia.

Ngaleso sikhathi, uMeg wayeqale ukuthatha umuthi womlomo osetshenziselwa ukwelapha ukuvuvukala emathunjini aphansi. Ngisho nangomshuwalense, wayekhokha cishe u- $ 350 ephaketheni ngenyanga ngalokhu kwelashwa. Kepha ubesaya endlini yangasese kakhulu, ezwa ubuhlungu besisu, futhi enezimpawu ezifana nomkhuhlane ezifana nokuqaqamba komzimba nokugodola.

UMeg ubebuye abhekane nobuhlungu obungapheli beqolo iminyaka. Ngemuva kokuthola izimpawu ze-UC, ubuhlungu bakhe emuva buye baba bukhulu kakhulu.

"Angikwazanga ukuhamba," kukhumbula uMeg. "Ngangiyisicaba phansi, angikwazi ukunyakaza."

Uxhumane nodokotela abasha be-GI esibhedlela sendawo, owamdlulisela kudokotela wamathambo. Wamthola ukuthi une-sacroiliitis, okuwukuvuvukala kwamalunga axhuma umgogodla wakho ophansi okhalweni.

Ocwaningweni lwakamuva olushicilelwe ku-Arthritis Care and Research, abacwaningi bathole ukuthi i-sacroiliitis ithinta cishe abantu abane-UC. Ngokuvamile, ukuvuvukala okuhlangene kuyinkinga ejwayelekile kakhulu engekho emathunjini ye-IBD, kubika i-Crohn's & Colitis Foundation.

Isazi samathambo sikaMeg samxwayisa ngokuthi imishanguzo eminingi esetshenziselwa ukwelapha i-sacroiliitis yenza i-UC ibe yimbi. I-Infliximab (Remicade, Inflectra) ibingenye yezidakamizwa ezimbalwa angazithatha ukuphatha zombili lezi zimo. Uzodinga ukuvakashela esibhedlela njalo emavikini amane ukuthola ukwelashwa kwe-infliximab okuvela kumhlengikazi.

UMeg wayeka ukuthatha isidakamizwa somlomo ayekade ekuso futhi waqala ukuthola ukumnika kwe-infliximab. Akakhokhelanga lutho ephaketheni ngalezi infusions eminyakeni embalwa yokuqala. Umhlinzeki wakhe womshuwalense uthathe isikweletu esingu- $ 10,425 ngokwelashwa ngakunye.

Uchwepheshe we-Meg's GI uphinde wanquma i-enemus ye-steroidal ukusiza ukunciphisa ukuvuvukala emathunjini akhe aphansi. Wakhokha cishe u- $ 30 ephaketheni lapho egcwalisa incwadi kadokotela yalomuthi. Kwakufanele ayigcwalise kanye kuphela.

Ngalezi zindlela zokwelapha, uMeg waqala ukuzizwa engcono.

“Engake ngakucabanga ukuthi ubuhlungu abuzange bube bungu-zero, empeleni lokho kufana nezine esikalini sezinhlungu. Ngangivele ngikujwayele. Bese kuthi lapho sengiyitholile imishanguzo, kwakungathi, oh nkosi yami, bengihlala ebuhlungwini obukhulu futhi benginganakile. ”

Leso sikhathi sokunethezeka asihlalanga isikhathi eside.

Iningi labantu abane-UC lidlula ezikhathini zokuxolelwa ezingadlula amasonto, izinyanga, noma ngisho neminyaka. Ukuthethelelwa kulapho izimpawu zesifo esingelapheki njenge-UC zinyamalala. Lezi zikhathi ezingenazo izimpawu azilindelekile. Ngeke wazi ukuthi zizohlala isikhathi esingakanani nokuthi uzoba nini nokunye ukuvuleka.

UMeg wabhekana nesikhathi sakhe sokuqala sokuxolelwa kusuka ngoMeyi 2014 kuze kube nguSepthemba ngalowo nyaka. Kepha ngo-Okthoba, wayesebhekene nezimpawu eziqeda amandla ze-UC futhi. Ukuhlolwa kwegazi kanye ne-colonoscopy kuveze amazinga aphezulu okuvuvukala.

Kuwo wonke u-2014 nango-2015, uMeg uvakashele isibhedlela izikhathi eziningi ukwelapha izimpawu kanye nezinkinga zama-flares, kufaka phakathi ubuhlungu nokoma.

“Ukwehla kwamanzi emzimbeni yikona okukuthola ngempela. Kuyesabeka. ”

Uchwepheshe wakhe we-GI uzame ukulawula lesi sifo ngemithi kadokotela - hhayi kuphela i-infliximab ne-steroidal enemas, kepha futhi ne-prednisone, 6-mercaptopurine (6-MP), allopurinol, antibiotic, nabanye. Kodwa le mithi yayinganele ukumgcina exolelwe.

Ngemuva kokunye ukuvuleka nokulaliswa esibhedlela ekuqaleni kuka-2016, uMeg uthathe isinqumo sokuhlinzwa ukuze kususwe i-colon ne-rectum yakhe. Kulinganiselwa ukuthi abantu abane-UC badinga ukuhlinzwa ukuze belaphe lesi simo.

UMeg waqala ukuhlinzwa kabili ngoMeyi 2016. Ithimba lakhe elihlinzayo lasusa ikholoni kanye nengxenyeni yalo lasebenzisa ingxenye yamathumbu akhe amancane ukwenza i- "J-poch." I-J-poouch ekugcineni izosebenza esikhundleni se-rectum yakhe.

Ukukunika isikhathi sokululama, udokotela wakhe ohlinzayo unamathisele ukuphela okunqanyuliwe kwamathumbu akhe amancane embotsheni yesikhashana esiswini sakhe - istimu angadlula ngaso isitulo esikhwameni se-ileostomy.

Wahlinzwa okwesibili ngo-Agasti 2016, lapho iqembu lakhe lokuhlinza laphinde laxhuma amathumbu akhe amancane kuJ-poch. Lokhu kuzomvumela ukuthi adlule indle ngokwejwayelekile, ngaphandle kwesikhwama se-ileostomy.

Okokuqala kwalowo msebenzi kubiza u- $ 89,495. Leyo mali ayizange ifake izinsuku ezinhlanu zokunakekelwa esibhedlela nokuhlolwa akuthola ngemuva kwalokho, okwabiza amanye ama- $ 30,000.

Umsebenzi wesibili wabiza u- $ 11,000, kanye no- $ 24,307 ngezinsuku ezintathu zokunakekelwa nokuhlolwa esibhedlela.

UMeg wachitha ezinye izinsuku ezingama-24 esibhedlela ukuthola ukwelashwa kwe-pancreatitis, i-pouchitis, ne-ileus yangemva kokuhlinzwa.Lokho kuhlala kumlahlekisela u- $ 150,000 okhulayo.

Sekukonke, uMeg walaliswa esibhedlela amahlandla ayisithupha ngo-2016. Ngaphambi kokuphela kokuvakasha kwakhe, washaya umkhawulo waminyaka yonke owawubekwe umhlinzeki wakhe womshuwalense ngemali ayikhipha ephaketheni yokulala esibhedlela. Kwakudingeka akhokhe ama- $ 600 kuphela lapho eqala ukusebenza.

Inkampani yakhe yomshwalense yathatha yonke enye ithebhu - amakhulu ezinkulungwane zamaRandi kwizikweletu zesibhedlela umndeni wakhe obekufanele ngabe uzikhokhele ukube ubengaqinisekisiwe.

Ukuhlolwa okuqhubekayo nokwelashwa

Kusukela agcina ukulaliswa esibhedlela ngo-2016, uMeg ubelokhu ethola imithi yokwelapha isimo sakhe. Ubuye futhi walandela ukudla okunomsoco ngokucophelela, ethatha izithasiselo ze-probiotic, futhi enza i-yoga ukugcina amathumbu namalunga akhe enempilo.

Akukho kulezi zindlela zokwelapha ezibiza kakhulu njengokuhlala esibhedlela, kepha uyaqhubeka nokukhokha inani elibalulekile kumaphrimiyamu omshuwalense nyangazonke, izindleko ze-copay, nezindleko zokukhokhelwa kwezimali zokunakekelwa.

Isibonelo, ubenenani okungenani i-colonoscopy eyodwa ngonyaka kusukela ngo-2014. Ngayinye yalezi zinqubo, ukhokhe ama- $ 400 ngamacala aphuma ephaketheni. Wabuye wahlola i-J-poch yakhe ngemuva kokuhlinzwa, okwamkhokhela u- $ 1,029 ngemali ekhishwa ephaketheni.

Usathola ukufakwa kwe-infliximab ukwelapha ubuhlungu obuhlangene. Yize manje ethola ukumnika okukodwa njalo emavikini ayisishiyagalombili esikhundleni samasonto onke ayisithupha. Ekuqaleni, wayengakhokhi lutho ephaketheni ngalezi zindlela zokwelapha. Kepha ukuqala ngo-2017, ngenxa yoshintsho kunqubomgomo yabo emikhulu, umhlinzeki wakhe womshuwalense waqala ukusebenzisa imali ekhokhwayo ye-coinsurance.

Ngaphansi kwesimodeli esisha se-coinsurance, uMeg ukhokha u- $ 950 ephaketheni ngokufakwa ngakunye kwe-infliximab akutholayo. Imali ayibambayo minyaka yonke ayisebenzi kulezi zinkokhiso. Noma ngabe ushaya imali yakhe ayidonsayo, kuzodingeka akhokhe izinkulungwane zamaRandi ngonyaka ukuthola lezo zonyango.

Uthola i-yoga iwusizo ekuphatheni ubuhlungu nasekuqedeni ukucindezeleka. Ukugcina izingcindezi zakhe ziphansi kumsiza ukuthi agweme ukuqhuma. Kepha ukuya emakilasini e-yoga njalo kungabiza, ikakhulukazi uma ukhokhela ukuvakashelwa kokungena kunokuphasa nyangazonke.

“Kushibhile uma uthenga inyanga engenamkhawulo, kodwa omunye wemiphumela yokuthi ngibe nesifo sami ukuthi angizizwa ngikhululekile ukuthenga noma yini engenamkhawulo noma ukuthenga izinto kusengaphambili. Ngoba njalo lapho ngenza lokho, bengilaliswa esibhedlela noma ngigula kakhulu ukuthi ngikwazi ukusebenzisa lokho engikuthengile. ”

UMeg wenza iningi le-yoga yakhe ekhaya, esebenzisa uhlelo lokusebenza lwefoni olungu- $ 50.

Ukuziphilisa

Yize ekwazile ukuqeda iziqu zakhe ze-master, uMeg ukuthole kunzima ukuthola nokugcina umsebenzi ngenkathi elawula izimpawu ze-UC kanye nobuhlungu obungapheli obuhlangene.

"Ngangiqala ukucabanga ukuphola futhi, ngangiqala ukucabanga ngokuzingela imisebenzi, konke, bese impilo yami iqala ukuwohloka ngokushesha," kukhumbula uMeg.

Wancika ngokwezezimali kubazali bakhe, abebe ngumthombo obalulekile wokumeseka.

Basizile ukumboza izindleko zokuhlolwa okuningi nokwelashwa. Baye bammelela ngesikhathi egula kakhulu ukuthi angaxhumana nabahlinzeki bezempilo. Futhi banikeze ukusekelwa okungokomzwelo ukuze bamsize abhekane nemiphumela ukugula okungamahlalakhona okuye kwaba nayo empilweni yakhe.

"Kunzima impela ukuthatha isithombe seqiniso, esiphelele salokho ukuba nesifo esinjena kwenza kuwe nasemndenini wakho," kusho uMeg.

Kepha izinto seziqale ukubheka phezulu. Njengoba uMeg esuswe ikholoni ne-rectum yakhe, uhlangabezane nezimpawu ze-GI ezimbalwa kakhulu. Ubone ukuthuthuka ngezinhlungu zakhe ezihlangene.

“Izinga lokuphila kwami ​​lingcono ngamaphesenti angama-99. Kukhona lelo phesenti eli-1 umuntu obheka empilweni yami onempilo enhle futhi ongakaze abe nezinkinga zokugaya - mhlawumbe bacabanga ukuthi ngingumuntu ogulayo. Kodwa ngokubona kwami, kungcono kakhulu. ”

UMeg useqale ukusebenza ekhaya njengombhali ozimele nomthwebuli zithombe, okumnika amandla okuthi usebenza kuphi nokuthi usebenza isikhathi esingakanani. Unebhulogi yokudla, iMeg is Well.

Ekugcineni, unethemba lokuthi uzimele ngokwezezimali ukuze akwazi ukuphatha izindleko zokuphila nezifo ezingamahlalakhona eyedwa.

"Ngiyakuzonda ukuthi abazali bami kumele bangisize," esho, "ukuthi ngingowesifazane oneminyaka engama-31 osadinga ukuthembela osizweni nasekusekelweni kwezezimali ngabazali bakhe. Ngiyakuzonda impela lokho, futhi ngifuna ukuzama ukuthola indlela engingakusebenzisa ngayo konke kimi. ”