Mtengo Wokhala Ndi Ulcerative Colitis: Nkhani ya Nyannah

Zamkati

• Kufufuza matenda
• Mayeso ndi zolakwika zamankhwala
• Kulipira mtengo wa chisamaliro
• Kukonzekera zam'tsogolo

Patatha chaka chopitilira chaka, a Nyannah Jeffries akadalipirabe ndalama yoyamba kuchipatala yomwe adalandira pakufuna kwawo kudziwa chomwe chikuyambitsa zowawa za m'mimba zomwe adakumana nazo.

Nyannah adapita ku dipatimenti yadzidzidzi kuderalo mu Okutobala 2017 atawona magazi mchimbudzi chake. Iye analibe inshuwaransi yazaumoyo panthawiyo, kotero kuti kupita kuchipatala kumayenera kukhala kotsika mtengo.

"Poyamba ndidapita kuchipinda chodzidzimutsa, ndipo adati sawona chilichonse," adauza Healthline, "koma ndimakhala ngati," Ayi, ndikutaya magazi, ndipo ndikudziwa kuti pali china chake chikuchitika. "

Achipatala adayesa mayeso angapo ku Nyannah, koma sanapeze matenda. Anatulutsidwa popanda mankhwala, malingaliro oti apeze dokotala wam'mimba (GI), ndi ndalama pafupifupi $ 5,000.

Sizinapitirire miyezi ingapo kuti Nyannah anapezeka ndi ulcerative colitis (UC), mtundu wa matenda opatsirana am'matumbo omwe amachititsa kutupa ndi zilonda kukulira mkatikati mwa matumbo akulu (colon).

Kufufuza matenda

Nyannah adayamba kukhala ndi ziwonetsero za UC ali ndi zaka 20. Ankakhala ndi amayi ake ndi agogo ake ndipo amagwira ntchito yaying'ono monga wogulitsa kwa Clinique.

Mu Novembala 2017, mwezi womwe adapita kukafika ku dipatimenti yadzidzidzi, adayamba ntchito yayitali ndikugwira ntchito yanthawi zonse.

Kusinthaku kunamupangitsa kukhala woyenera kulandira inshuwaransi yothandizidwa ndi olemba anzawo ntchito.

"Kuntchito kwanga, ndimagwira ntchito yaganyu, ndipo amandipanga kuti ndizigwira ntchito nthawi zonse," akukumbukira, "koma ndimafunikira kuti izi zithandizire kuti ndikhale ndi inshuwaransi."

Atakhala ndi inshuwaransi, Nyannah adapita kukaonana ndi dokotala wake wamkulu (PCP). Dokotala adakayikira kuti Nyannah atha kukhala ndi vuto la kusagwirizana ndi gluteni ndipo adalamula kuti akayezetse magazi kuti aone ngati ali ndi matenda a Celiac. Mayeserowo atabweranso alibe, adatumiza Nyannah kwa GI kuti akamuyese kwambiri.

GI adachita endoscopy kuti aunike mkati mwa thirakiti la GI la Nyannah. Izi zidadzetsa matenda a UC.

Mayeso ndi zolakwika zamankhwala

Anthu omwe ali ndi UC nthawi zambiri amakhala ndi chikhululukiro, pamene matenda awo amatha.Koma nthawi izi zimatha kutsatiridwa ndi kuyaka kwazomwe zimachitika matendawa akabwerera. Cholinga cha chithandizo ndikukwaniritsa ndikukhalabe ndi chikhululukiro kwa nthawi yayitali.

Pofuna kuthana ndi zizolowezi zake ndikuthandizira kukhululukidwa, dotolo wa Nyannah adamupatsa mankhwala akumwa otchedwa Lialda (mesalamine) komanso kuchuluka kwa mankhwala a steroid prednisone.

"Amapereka kuchuluka kwa prednisone, kutengera momwe matenda anga akumvera komanso kuchuluka kwa magazi," adalongosola a Nyannah.

"Kotero, ngati ndikutaya zambiri, adazisunga pa 50 [milligrams], kenako ndikayamba kukhala bwino pang'ono, timaziponya pansi kukhala ngati 45, kenako 40, kenako 35," adapitiliza, "Koma nthawi zina ndikamatsika, ndimakonda 20 kapena 10, ndiye kuti ndimayambanso kukha magazi, ndiye amandibwezeretsa."

Atamwa kwambiri prednisone, adayamba kukhala ndi zovuta zina, kuphatikiza kuuma kwa nsagwada, kuphulika, komanso tsitsi. Anachepa thupi ndipo adalimbana ndi kutopa.

Koma kwa miyezi ingapo, kuphatikiza kwa Lialda ndi prednisone kumawoneka kuti kumawongolera zizindikiritso zake za GI.

Nthawi yokhululukidwayo sinakhalitse kwa nthawi yayitali, komabe. Mu Meyi 2018, Nyannah adapita ku North Carolina kukaphunzira maphunziro. Atabwerera kunyumba, matenda ake adayambanso kubwezera.

"Sindikudziwa ngati zinali chifukwa cha ine kuyenda komanso kupsinjika chifukwa cha izi kapena chiyani, koma nditabwerako, ndidakumana ndi zoyipa zoyipa. Zili ngati palibe mankhwala omwe ndimamwa anali kugwira ntchito. "

Nyannah amayenera kutenga milungu iwiri yopuma kuti apulumuke, ndikugwiritsa ntchito masiku ake atchuthi.

GI wake adamuchotsa ku Lialda ndikumupatsa jakisoni wa adalimumab (Humira), mankhwala a biologic omwe angathandize kuchepetsa kutupa m'matumbo.

Sanatengeko zoyipa zilizonse kuchokera ku Humira, koma wapeza kuti ndizovuta kudziwa momwe angadzibayire mankhwalawa. Malangizo ochokera kwa namwino wosamalira kunyumba athandiza - koma mpaka pang'ono.

"Ndiyenera kudzilowetsa jekeseni sabata iliyonse, ndipo poyamba mayi wachipatala atabwera, ndimakhala ngati katswiri," adatero. “Ndimangodzibaya jakisoni. Ndinali ngati, 'O, izi sizoyipa kwambiri.' Koma ndikudziwa ngati kulibe, nthawi ikamapita, nthawi zina mumatha kukhala ndi tsiku loipa kapena tsiku loipa pomwe mungotopa ndipo mwatopa ngati, 'Oo, bambo anga, ndikuchita mantha kuti ndidzibaya jekeseni.' ”

"Popeza ndachita izi kangapo ka 20, ndikudziwa momwe izi zidzakhalire," adapitiliza, "komabe mumakhala ozizira pang'ono. Ndicho chinthu chokha. Ndimakhala ngati, 'Chabwino, ndiyenera kukhazikika, kupumula, ndikumwa mankhwala ako.' Chifukwa uyenera kuganizira, pamapeto pake, izi zindithandiza. "

Kulipira mtengo wa chisamaliro

Humira ndiokwera mtengo. Malinga ndi nkhani mu New York Times, mtengo wapachaka pambuyo pobwezeredwa udakwera kuchokera $ 19,000 pa wodwala mu 2012 mpaka $ 38,000 pa wodwala mu 2018.

Koma kwa Nyannah, mankhwalawa amaphatikizidwa ndi gawo limodzi la inshuwaransi yazaumoyo. Iye adalembetsanso pulogalamu ya kuchotsera, yomwe yabweretsa mtengo wotsika. Sanafunikire kulipira chilichonse mthumba chifukwa cha mankhwala kuyambira pomwe adalipira inshuwaransi yake ya $ 2,500.

Ngakhale zili choncho, amakumanabe ndi ndalama zambiri zotulutsira UC, kuphatikiza:

• $ 400 pamwezi pamalipiro a inshuwaransi
• $ 25 pamwezi pazowonjezera ma probiotic
• $ 12 pamwezi pazowonjezera mavitamini D
• $ 50 kulowetsedwa kwa ayironi akafuna

Amalipira $ 50 paulendo uliwonse kuti akawone GI yake, $ 80 paulendo uliwonse kuti akawone dokotala wamagazi, ndi $ 12 pakuyesa magazi kulikonse komwe angapangire.

Amalipiranso $ 10 paulendo uliwonse kuti akawone mlangizi wamaganizidwe amisala, yemwe akumuthandiza kuthana ndi zovuta zomwe UC yakhala nazo pamoyo wake komanso kudzidzimva.

Nyannah amayeneranso kusintha momwe amadyera. Pofuna kuti zizindikiritso zake ziziyenda bwino, ayenera kudya zokolola zatsopano komanso zakudya zosakonzedwa bwino kuposa kale. Izi zawonjezera ndalama yake yogula, komanso kuchuluka kwa nthawi yomwe amakhala akukonzekera chakudya.

Pakati pa zolipirira kusamalira mkhalidwe wake ndikuphimba zolipirira tsiku ndi tsiku, Nyannah ayenera kupanga bajeti ya sabata iliyonse mosamala.

"Ndimakhala wopanikizika ndikafika tsiku lolipira chifukwa ndili ngati," Ndili ndi zambiri zoti ndichite, "adatero.

"Ndiye, ndikamalipidwa, ndimayesetsadi," adapitiliza. "Ndili ngati, chabwino, ndingathe kuchita mwina $ 10 kulimbana ndi hematology lero ndi $ 10 kulowera ku pulayimale. Koma nthawi zonse ndimayesetsa kulipira madokotala omwe ndimayenera kuwawona pafupipafupi, ndipo ngongole zanga zakale, ndimatha kuzengereza mpaka cheke chotsatira kapena kuyesa kukonza nawo dongosolo. ”

Waphunzira movutikira kuti ndikofunikira kuyika ngongole kuchokera kwa madokotala zomwe amadalira kuti azisamalidwa pafupipafupi. Atachedwa kulipira ngongole imodzi, GI wake adamusiya ngati wodwala. Anayenera kupeza wina woti amuthandizire kuchipatala.

M'mwezi wa Novembala, chipatalachi chidayamba kukongoletsa malipiro ake kuti abweze ngongoleyo paulendo wake woyamba wachangu mu Okutobala 2017.

"Amandiyimbira foni nati, 'Muyenera kulipira iyi, muyenera kulipira iyo,' mwamakani kwambiri. Ndipo ndimakhala ngati, 'Ndikudziwa, koma ndili ndi ngongole zina zonsezi. Sindingathe. Osati lero. 'Izi zitha kundipangitsa kukhala wopanikizika, chifukwa chake zimangokhala zopondereza. ”

Monga anthu ambiri omwe ali ndi UC, Nyannah amapeza kuti kupsinjika kumatha kuyambitsa moto ndikupangitsa kuti zizindikilo zake ziwonjezeke.

Kukonzekera zam'tsogolo

Woimira anthu ogwira ntchito ku Nyannah (HR) komanso manejala pantchito akhala akumvetsetsa zosowa zake.

"Yemwe ndimakhala naye ku Clinique, amandithandiza kwambiri," adatero. “Amandibweretsera Gatorade, chifukwa ndimataya maelekitirodi, ndipo nthawi zonse amaonetsetsa kuti ndikudya. Ali ngati, 'Nyannah, uyenera kupita nthawi yopuma. Muyenera kudya kanthu. '”

"Ndipo, monga ndidanenera, HR wanga, alidi wokoma," adapitiliza. “Nthawi zonse amaonetsetsa ngati ndikufuna nthawi yopuma, andikonzekeretsa moyenera. Ndipo ngati ndikhala ndi nthawi yopita kwa dokotala, ndimapita kwa iye nthawi zonse asanapange ndandanda, ndiye kuti amatha kulumikizana ndikusintha chilichonse chomwe angafune kuti ndipite kukakumana. ”

Koma pamene Nyannah adwala kwambiri kuti agwire ntchito, amayenera kupuma tchuthi.

Izi zimapangitsa kuti awonongeke pantchito yake yolipira, zomwe zimakhudza ndalama zake mpaka zomwe sangakwanitse kugula. Pofuna kupeza zofunika pamoyo, wayamba kufunafuna ntchito yatsopano ndi malipiro apamwamba. Kusunga inshuwaransi yazaumoyo ndikofunikira kwambiri pakusaka ntchito.

Asanapemphe udindo, amayang'ana tsamba lawebusayiti kuti adziwe za phindu la ogwira ntchito. Amalumikizananso ndi kulumikizana kwawo ku Humira popeza kusintha kwa ntchito yake kapena inshuwaransi yazaumoyo kumatha kukhudza kuyenerera kwake pulogalamu yobweza.

"Ndiyenera kulankhula ndi kazembe wanga wa Humira," adalongosola, "chifukwa ali ngati, 'Mukufunabe kuwonetsetsa kuti mutha kupeza mankhwala anu ndikuphimba.'"

Ndi ntchito yatsopano, akuyembekeza kupeza ndalama zokwanira kuti angolipira ngongole zake komanso azigwiritsa ntchito kamera ndi zida ndi maphunziro omwe amafunikira kuti apange ntchito yojambula.

“Ndili ndi ngongole zonse, ndiyeno ndiyenerabe kuyika mafuta m'galimoto yanga kuti ndipite ndi kubwerera kuntchito, ndiyenerabe kugula golosale, kotero sindigulanso chilichonse ndekha. Ndiye chifukwa chake ndikuyesera kupeza ntchito yatsopano, kuti ndikhale ndi ndalama zoonjezera kuti ndipeze zinthu zina zofunika. "

Afunanso kupatula ndalama zina kuti athandizire kulipira mtengo wamankhwala womwe angafune mtsogolo. Mukakhala ndi thanzi labwino, ndikofunikira kukonzekera ngongole zamankhwala zosadabwitsa.

"Muyenera kuwerengetsa ngongolezo - ndipo zimapezekanso," adalongosola.

"Ndinganene kuti ndiyesere ndikukonzekeretsani izi, monga, nthawi zonse yesetsani kuyika china chake pambali, chifukwa simudziwa."