Mtengo Wokhala Ndi Ulcerative Colitis: Nkhani ya Jackie

Zamkati

• Kupeza matenda
• Mtengo 'wowopsa' wosamalira
• Kutha pang'ono pazosankha
• Maopaleshoni anayi, madola masauzande
• Kupempha thandizo
• Kupsinjika kokhala ndi inshuwaransi
• Poyembekezera kubwereranso kwina

Jackie Zimmerman amakhala ku Livonia, Michigan. Zimatenga maola angapo kuti ayendetse galimoto kuchokera kunyumba kwake kupita ku Cleveland, Ohio - ulendo womwe adapanga maulendo ambiri kuti aonane ndi madokotala.

"[Unali] mwina osachepera $ 200 ulendo uliwonse ndikapita kumeneko, pakati pa chakudya, ndi mpweya, ndi nthawi, ndi zinthu zonse," adatero.

Maulendowa ndi gawo chabe lazomwe Jackie adalipira kuti athetse vuto lake la ulcerative colitis (UC), matenda omwe akhala nawo kwazaka zambiri.

UC ndi mtundu wa matenda opatsirana am'mimba (IBD) omwe amachititsa kutupa ndi zilonda kumayamba mkati mwa matumbo akulu (colon). Zitha kuyambitsa kutopa, kupweteka m'mimba, magazi am'mbali, ndi zizindikilo zina. Zingathenso kubweretsa zovuta zosiyanasiyana, zina zomwe zimawopseza moyo.

Pofuna kuthana ndi vutoli, Jackie ndi banja lake adalipira madola masauzande ambiri pamalipiro a inshuwaransi, ma copay, komanso ndalama zochotseredwa. Awalipiranso ndalama m'thumba laulendo, mankhwala owonjezera pa-kauntala (OTC), ndi ndalama zina zothandizira.

"Ngati tikulankhula za inshuwaransi yomwe yalipira, tili ngati ndalama zankhaninkhani," adatero Jackie.

“Mwina ndili mgulu la $ 100,000. Mwina ndichifukwa choti sindikuganiza zokopa zaulendo uliwonse. "

Kupeza matenda

Jackie anapezeka ndi UC atakhala ndi zizindikilo za m'mimba (GI) kwazaka khumi.

Iye anati: “Moona mtima ndinali ndikudwala zilonda za m'mimba kwa zaka 10 ndisanawonane ndi dokotala, koma panthawiyo ndinali kusukulu ya sekondale, ndipo zinali zochititsa manyazi.”

Mu kasupe wa 2009, adawona magazi mchipinda chake ndipo adadziwa kuti yakwana nthawi yoti awonane ndi dokotala.

Anapita kwa katswiri wazachipatala wa GI. Analangiza Jackie kuti asinthe kadyedwe kake ndikumupatsa zakudya zowonjezera.

Pamene njirayi sinagwire, adachita sigmoidoscopy yosinthika - mtundu wa njira zomwe amagwiritsira ntchito poyang'ana m'matumbo ndi m'munsi m'matumbo. Adawona zizindikiritso za UC.

"Pofika nthawi imeneyo, ndinali nditakwiya kwambiri," Jackie akukumbukira.

“Zinali zopweteka kwambiri. Zinali zokumana nazo zowopsa kwenikweni. Ndipo ndikukumbukira, ndinali kugona patebulo, malowo anali atatha, ndipo anandigwira paphewa, ndipo anati, 'Osadandaula, ndi zilonda zam'mimba zokha.' ”

Koma ngakhale zochitikazo zinali zoyipa, palibe chomwe chingakonzekeretse Jackie kuthana ndi zovuta zomwe adzakumane nazo mzaka zikubwerazi.

Mtengo 'wowopsa' wosamalira

Pomwe adamupeza, Jackie anali pantchito yanthawi zonse. Sanafunikire kuphonya ntchito zambiri poyamba. Koma posakhalitsa, matenda ake adakulirakulira, ndipo amafunika kupatula nthawi yambiri kuti athe kuyang'anira UC.

"Pomwe zinthu zinali zovuta, ndipo zidachitika mwachangu kwambiri, ndinali mchipatala kwambiri. Ndinali mu ER mwina sabata iliyonse kwa miyezi. Ndimakhala nthawi yayitali kuchipatala, "adatero," ndimasowa ntchito yambiri, ndipo sanandilipire nthawi imeneyo. "

Atangomupeza, dokotala wa GI wa Jackie adamulembera mesalamine (Asacol), mankhwala am'kamwa othandiza kuchepetsa kutupa m'matumbo.

Koma atayamba kumwa mankhwalawo, adayamba kuchuluka kwamadzimadzi mozungulira mtima wake - zomwe sizimachitika motsatira mesalamine. Anayenera kusiya kugwiritsa ntchito mankhwalawa, kuchitidwa opaleshoni yamtima, ndikukhala sabata limodzi kuchipatala cha anthu odwala mwakayakaya (ICU).

Imeneyo inali njira yoyamba pamitengo yotsika mtengo, ndipo amakhala nthawi yayitali kuchipatala chifukwa cha matenda ake.

"Panthawiyo, ngongole zinali zongolowera. Ndinkatsegula ndikumangonena kuti, 'O, izi ndizitali komanso zowopsa,' kenako nkukhala ngati, 'Zochepa bwanji, ndizochepa bwanji, za malipiro? '”

Jackie adalembetsa inshuwaransi yazaumoyo yomwe ingathandize kulipira mtengo wa chisamaliro chake. Zikafika povuta kwambiri kuti athe kulipirira ndalama zokwana madola 600 pamwezi, makolo ake amalowererapo kuti amuthandize.

Kutha pang'ono pazosankha

Jackie amakhalanso ndi multiple sclerosis (MS), matenda omwe amangodziyimira pawokha omwe amalepheretsa mankhwala ena omwe amatha kumwa.

Chifukwa cha zoletsedwazo, dokotala wake sakanatha kupereka mankhwala a biologic monga infliximab (Remicade), omwe nthawi zambiri amagwiritsidwa ntchito pochiza UC ngati mesalamine sichiri patebulo.

Adalamulidwa budesonide (Uceris, Entocort EC) ndi methotrexate (Trexall, Rasuvo). Palibe mankhwalawa adagwira ntchito. Zinkawoneka ngati opaleshoni ikhoza kukhala njira yabwino kwambiri.

"Pa nthawiyo, ndimapitilizabe kuchepa," adanenanso, "ndipo osagwira ntchito mwachangu, ndimayamba kunena zakuwona dotolo."

Ndipamene maulendo a Jackie ku Cleveland Clinic ku Ohio adayamba. Amayenera kudumpha malire kuti akalandire thandizo lomwe amafunikira.

Maopaleshoni anayi, madola masauzande

Ku Cleveland Clinic, a Jackie amakachitidwa opaleshoni kuti atulutse m'matumbo ndi m'matumbo ndikupanga posungira dzina loti "J-poch." Izi zimamulola kuti azisunga chopondapo ndikuchiyesa anally.

Ntchitoyi ikhala ndi zochitika zitatu zomwe zimafalikira kwa miyezi isanu ndi inayi. Koma chifukwa cha zovuta zosayembekezereka, zidatenga ma opareshoni anayi komanso kupitilira chaka kuti amalize. Anamuchita opareshoni koyamba mu Marichi 2010 ndipo womaliza wake mu June 2011.

Masiku angapo asanachite opareshoni iliyonse, Jackie adalandiridwa kuchipatala kukayezetsa asanamugwire. Amakhalanso masiku angapo atayesedwa ndi kusamalidwa.

Nthawi iliyonse akapita kuchipatala, makolo ake amayang'ana ku hotelo yapafupi kuti amuthandize panthawiyi. "Tikulankhula masauzande madola kuchokera mthumba, kuti tikangokhalako," adatero Jackie.

Ntchito iliyonse imawononga $ 50,000 kapena kupitilira apo, zambiri mwazo zimaperekedwa kwa kampani yake ya inshuwaransi.

Omwe amamupatsa inshuwaransi adamupatsa ndalama zokwana madola 7,000 pachaka, koma mgawo lachiwiri la 2010, kampaniyo idachita bizinesi. Anayenera kupeza wopezera wina ndikupeza dongosolo latsopano.

“Chaka chimodzi chokha, ndinalipira ndalama zochotsera ndalama zokwana madola 17,000 m'thumba chifukwa kampani yanga ya inshuwalansi inandisiya ndipo ndinayenera kupeza ina yatsopano. Ndinali nditalipira kale ndalama zanga zochotsedwazo komanso zotuluka m'thumba, choncho ndinayenera kuyambiranso pakatikati pa chaka. ”

Kupempha thandizo

Mu June 2010, Jackie adachotsedwa ntchito.

Adasowa ntchito yambiri, chifukwa chodwala komanso kupita kuchipatala.

"Amandiimbira foni nditatha kuchitidwa opaleshoni ndikundifunsa kuti," Hei, ubwerera liti? "Ndipo palibe njira yofotokozera anthu omwe simukuwadziwa," adatero.

“Sindinakhaleko mokwanira. Anali achisomo pankhaniyi, koma adandichotsa ntchito, ”adauza Healthline.

Jackie amalandira $ 300 pa sabata pamapindu osowa ntchito, zomwe zinali ndalama zochuluka kwambiri kuti iye athe kulandira chithandizo cha boma - koma osakwanira kulipirira ndalama zake komanso ndalama zakuchipatala.

"Hafu ya ndalama zanga pamwezi ikadakhala ndalama yanga ya inshuwaransi panthawiyo," adatero.

"Ndinali kupempha thandizo kuchokera kubanja langa, ndipo ndinali ndi mwayi kuti angandithandizire, koma zinali zopweteka kwambiri kukhala wamkulu ndikumafunabe makolo anu kuti akuthandizeni kulipira ngongole zanu."

Pambuyo pa opaleshoni yake yachinayi, Jackie adasankhidwa pafupipafupi ku Cleveland Clinic kuti amuwone ngati akuchira. Atayamba kutupa J-thumba lake, vuto lofala la opaleshoni yomwe adachita, adafunikira kupita ku Cleveland kukalandira chithandizo chotsatira.

Kupsinjika kokhala ndi inshuwaransi

Opaleshoni idapangitsa kusiyana kwakukulu pamiyoyo ya Jackie. Popita nthawi, adayamba kumva bwino ndipo pamapeto pake adabwerera kuntchito.

Mu kasupe wa 2013, adapeza ntchito m'modzi mwaopanga magalimoto a "Big Three" ku Michigan. Izi zidamupatsa mwayi woti adule inshuwaransi yokwera mtengo yomwe adagula ndikulembetsa nawo mapulani omwe amathandizidwa ndi olemba anzawo ntchito m'malo mwake.

"Ndidatengera inshuwaransi yawo, inshuwaransi ya abwana anga, koyamba chifukwa ndimamva ngati kuti ndakhazikika pantchito ndipo ndikudalira kuti ndidzakhala komweko kwakanthawi," adakumbukira.

Abwana ake amamvetsetsa zosowa zake zathanzi ndipo adamulimbikitsa kuti azipuma tchuthi nthawi yomwe angafune. Anakhala pantchitoyo kwa zaka pafupifupi ziwiri.

Atasiya ntchitoyo, adagula inshuwaransi kudzera kusinthana kwa inshuwaransi ya boma yomwe idakhazikitsidwa pansi pa Affordable Care Act ("Obamacare").

Mu 2015, adayamba ntchito ina ku bungwe lopanda phindu. Anasintha ndondomeko yake ya ACA kwa ndondomeko ina yothandizidwa ndi olemba ntchito. Izi zinagwira ntchito kwakanthawi, koma adadziwa kuti sinali yankho la nthawi yayitali.

"Ndimamva ngati ndakhala pantchito nthawi yayitali kuposa momwe ndimafunira zinthu ngati inshuwaransi," adatero.

Anabwereranso ku MS koyambirira kwa chaka chimenecho ndipo amafunika inshuwaransi kuti athe kulipira ndalama zoyendetsera zinthu zonse ziwiri.

Koma pankhani zandale, ACA idadzimva kukhala yosakhazikika kuti Jackie agule njira ina ya inshuwaransi posinthana ndi boma. Izi zidamupatsa kudalira dongosolo lomwe amamulipira.

Anayenera kupitiliza kugwira ntchito yomwe imamupangitsa kukhala wopanikizika kwambiri - zomwe zitha kupangitsa kuti ziwonetsero za MS ndi UC ziwonjezeke.

Poyembekezera kubwereranso kwina

Jackie ndi chibwenzi chake adakwatirana kumapeto kwa 2018. Monga mnzake, Jackie amatha kulembetsa nawo inshuwaransi yothandizidwa ndi olemba anzawo ntchito.

"Ndili ndi mwayi kuti ndidakwanitsa kupeza inshuwaransi ya amuna anga, kuti tidaganiza zokwatirana nthawi yoyenera," adatero.

Dongosololi limamupatsa chidziwitso chomwe amafunikira kuti athe kuthana ndi zovuta zingapo pomwe akugwira ntchito ngati mlangizi wodzilemba pakompyuta, wolemba, komanso wochirikiza odwala.

Ngakhale kuti matenda ake a GI akuyang'aniridwa, akudziwa kuti zitha kusintha nthawi iliyonse. Anthu omwe ali ndi UC amatha kukhala ndi nthawi yayitali yokhululukidwa yomwe ingatsatidwe ndi "flares" yazizindikiro. Jackie amayesetsa kupulumutsa zina mwa ndalama zomwe amapeza, poyembekezera kuti atha kubwerera.

"Nthawi zonse mumafuna kukhala ndi stash ya ndalama mukamadwala, chifukwa kachiwiri, ngakhale inshuwaransi yanu ikuphimba chilichonse ndipo ndizodabwitsa, mwina simukugwira ntchito. Chifukwa chake palibe ndalama zomwe zikubwera, mukadali ndi ngongole zapafupipafupi, ndipo palibe thandizo la wodwala kuti 'Ndikufuna zakudya mwezi uno.' ”

"Ndalama zomwe tili nazo sizingathe, ndipo ndalama zimayima mwachangu kwambiri pomwe simungathe kupita kuntchito," adanenanso, "ndiye malo okwera mtengo kwambiri."