Mtengo Wokhala Ndi Ulcerative Colitis: Nkhani ya Meg

Zamkati

• Kupeza matenda ndi chithandizo
• Kuyesa kosalekeza ndi chithandizo
• Kupeza ndalama

Ndizomveka kukhala osakonzekera mutapezeka kuti muli ndi matenda osachiritsika. Mwadzidzidzi, moyo wanu umayimitsidwa ndipo zinthu zofunika kuzisintha. Umoyo wanu ndi thanzi lanu ndiye cholinga chanu chachikulu ndipo mphamvu zanu zimadzipereka kupeza chithandizo.

Ulendo waku machiritso siwophweka konse, ndipo mwina mudzakumana ndi zopinga zingapo panjira. Chimodzi mwazolepheretsa, zachidziwikire, ndi momwe mungalipirire ndalama zoyendetsera matenda osachiritsika.

Kutengera ndi momwe zinthu ziliri, mutha kukhala ndi inshuwaransi yazaumoyo komanso ndalama zokwanira kulipirira chithandizo chanu osadandaula kwambiri.

Kapenanso, mwina muli ndi zaka zapakati pa 20, osalimbikitsidwa, kusukulu, ndikugwira ntchito yanthawi yochepa $ 15 pa ola limodzi. Izi ndi zomwe zidachitikira Meg Wells.

Zinali 2013 ndipo Meg anali atangoyamba kumene pulogalamu ya master ku Sonoma State University. Anali kuphunzira kasamalidwe kazikhalidwe, akuyembekeza tsiku lina kuti adzagwire ntchito yosunga zakale zakale ngati woyang'anira.

Meg anali ndi zaka 26, amakhala yekha, ndipo amagwira ntchito yaganyu. Anali ndi ndalama zokwanira kulipirira lendi ndi zolipirira sukulu zosiyanasiyana. Koma dziko lake linali litatsala pang'ono kusintha.

Kwa kanthawi, Meg anali akukumana ndi zinthu monga kudzimbidwa koyipa, gasi, ndi kutopa. Anali otanganidwa ndi ntchito komanso maphunziro omaliza maphunziro, motero adazengeleza kupita kwa dokotala.

Pofika Novembala wa 2013, komabe, zizindikilo zake zidakhala zowopsa kunyalanyaza.

"Ndimapita kubafa kwambiri," adatero, "ndipamene ndidayamba kuwona magazi, ndipo ndimakhala ngati, Chabwino, china chake sichabwino kwenikweni."

Ulcerative colitis (UC) ndi mtundu wa matenda opatsirana am'mimba (IBD) omwe amachititsa kutupa ndi zilonda kukula m'matumbo akulu. Nthawi zambiri, matenda amakula pang'onopang'ono ndikukula kwambiri pakapita nthawi.

Zomwe zimayambitsa vutoli sizikudziwika, koma ofufuza amakhulupirira kuti chibadwa, chilengedwe, komanso chitetezo chamthupi chambiri chitha kugwira ntchito.

Magazi pamalopo ndi chizindikiritso chodziwika cha UC. Meg atazindikira magazi, adadziwa kuti inali nthawi yoti athandizidwe.

Meg analibe inshuwaransi yazaumoyo panthawiyo. Amayenera kulipira ndalama zambiri mthumba maulendo onse a dokotala, kumuyesa magazi, komanso kumuyesa chopondapo kuti athetse zomwe zimayambitsa matenda ake.

Atapita maulendo angapo, gulu lake lazaumoyo lidatha kuchepetsa zomwe zimayambitsa matendawa ku UC, matenda a Crohn, kapena khansa ya m'matumbo.

Mmodzi mwa madokotala ake adamuwuza kuti mwina kungakhale kwanzeru kudikirira mpaka atakhala ndi inshuwaransi yazaumoyo asanayambe gawo lina - colonoscopy. Njirayi imatha kufika $ 4,000 popanda inshuwaransi.

Mphindi yakusimidwa, adagula inshuwaransi yazaumoyo kuchokera kwa broker. Koma ataphunzira kuti sizingakhudze chithandizo chilichonse chazachipatala mdera lake, adayenera kusiya.

"Pambuyo pake, makolo anga adatenga udindo chifukwa ndimadwala kwambiri kuti ndithane nawo," adatero Meg. "Apa ndiye ndinali ndikungotaya magazi komanso kumva kupweteka kwambiri."

Kupeza matenda ndi chithandizo

Kumayambiriro kwa chaka cha 2014, Meg adalembetsa ku Silver 70 HMO inshuwaransi yazaumoyo kudzera mwa Kaiser Permanente mothandizidwa ndi banja lake. Kuti apitirize kufalitsa, amalipira ndalama zokwana madola 360 pamwezi. Mtengo uwu uwonjezeka kufika $ 450 pamwezi mu 2019.

Amakhalanso ndi udindo wolipiritsa ndalama kapena mankhwala a copay pamankhwala ake ambiri, maulendo a azachipatala, njira zakuchipatala, chisamaliro cha odwala, komanso mayeso a labu. Zina mwa milanduyi ndi yomwe amalandila kuchotseredwa pachaka kuchipatala ndikumuyesa, zomwe ndi $ 2,250. Omwe amamupatsa inshuwaransi amakhalanso ndi ndalama zokwanira kutulutsa ndalama m'thumba kuchipatala, zomwe ndi $ 6,250 pachaka.

Ndili ndi inshuwaransi yazaumoyo m'manja, Meg adapita kukawona katswiri wamimba (GI). Anapanga colonoscopy komanso chapamwamba cha GI endoscopy ndipo anapezeka ndi UC.

Patapita miyezi ingapo, adasamukira kunyumba kukakhala ndi makolo ake ku Vacaville, California.

Pofika pano, Meg anali atayamba kumwa mankhwala akumwa omwe amagwiritsidwa ntchito pochizira kutupa m'matumbo. Ngakhale ndi inshuwaransi, amalipira pafupifupi $ 350 mthumba pamwezi pachithandizochi. Koma anali akupitabe kubafa kwambiri, akumva kupweteka m'mimba, komanso kukhala ndi zizindikilo zonga malungo monga kupweteka kwa thupi komanso kuzizira.

Meg nayenso wakhala akulimbana ndi ululu wopweteka kwambiri kwa zaka zambiri. Atakhala ndi zizindikilo za UC, kupweteka kwakumbuyo kudakulirako.

"Sindinathe kuyenda," anakumbukira Meg. "Ndinkangokhala pansi, osakhoza kusuntha."

Analumikizana ndi katswiri watsopano wa GI kuchipatala chakomweko, yemwe adamutumiza kwa rheumatologist. Anamupeza ndi sacroiliitis, komwe ndikutupa kwamalumikizidwe komwe kumalumikiza msana wanu wam'mimba ndi chiuno.

Kafukufuku waposachedwa wofalitsidwa mu Arthritis Care and Research, ofufuza apeza kuti sacroiliitis imakhudza pafupifupi anthu omwe ali ndi UC. Kawirikawiri, kutupa pamodzi ndi vuto lofala kwambiri la m'mimba la IBD, inatero Crohn's & Colitis Foundation.

Rheumatologist wa Meg adamuchenjeza kuti mankhwala ambiri omwe amagwiritsidwa ntchito pochizira sacroiliitis amachititsa kuti UC iwonjezeke. Infliximab (Remicade, Inflectra) anali amodzi mwamankhwala ochepa omwe amatha kumwa kuti athetse mavuto onsewa. Amayenera kupita kuchipatala milungu inayi iliyonse kuti alandire kulowetsedwa kwa infliximab kuchokera kwa namwino.

Meg adasiya kumwa mankhwala amkamwa omwe anali nawo ndikuyamba kulandira infusions a infliximab. Sanalipire chilichonse mthumba chifukwa chodzudzulidwa izi kwa zaka zoyambirira. Omwe adamupatsa inshuwaransi adatenga $ 10,425 pachipatala chilichonse.

Katswiri wa GI wa Meg adalembanso ma steroidal enemas kuti athandize kuchepetsa kutupa m'matumbo ake apansi. Analipira pafupifupi $ 30 mthumba pomwe adadzaza mankhwala omwe amamwa. Amangofunika kudzaza kamodzi.

Ndi mankhwalawa, Meg adayamba kumva bwino.

"Zomwe ndimaganiza kuti ndizopweteka kwambiri, zimangokhala ngati zinayi pamlingo wowawa. Ndinali nditazolowera kwambiri. Ndipo nthawi ina ndikakhala ndikumwa mankhwala, zinali ngati, o, ndakhala ndikumva kuwawa kwambiri ndipo sindinazindikire konse. "

Nthawi ya chitonthozo sinakhalitse.

Anthu ambiri omwe ali ndi UC amadutsa munthawi zakhululukidwe zomwe zimatha milungu ingapo, miyezi, kapena zaka. Chikhululukiro ndipamene zizindikiro za matenda aakulu ngati UC zimasowa. Nthawi zopanda zizindikirozi sizimadziwika. Simudziwa kuti adzatenga nthawi yayitali bwanji komanso mudzakhala ndi chiwonongeko china.

Meg adakumana ndi nthawi yoyamba kukhululukidwa kuyambira Meyi 2014 mpaka Seputembara chaka chomwecho. Koma pofika Okutobala, adakumananso ndi zofooka za UC. Kuyesedwa kwa magazi ndi colonoscopy kuwulula kuchuluka kwa kutupa.

Pazaka zonse za 2014 ndi 2015, Meg adapita kuchipatala kangapo kuti akachiritse zovuta zamatenda, kuphatikiza kupweteka ndi kutaya madzi m'thupi.

“Kuchepa kwa madzi m'thupi ndi komwe kumakupatsani. Ndizowopsa. "

Katswiri wake wa GI adayesetsa kuthana ndi matendawa ndi mankhwala - osati infliximab ndi steroidal enemas yokha, komanso prednisone, 6-mercaptopurine (6-MP), allopurinol, maantibayotiki, ndi ena. Koma mankhwalawa sanali okwanira kuti amukhululukire.

Pambuyo paziwopsezo zina ndikugonekedwa mchipatala koyambirira kwa 2016, Meg adaganiza zochitidwa opaleshoni kuti amuchotsere koloni ndi thumbo. Akuti anthu omwe ali ndi UC amafunika kuchitidwa opaleshoni kuti athetse vutoli.

Meg anali ndi opareshoni yoyamba mwa ma Meyi awiri mu Meyi 2016. Gulu lake la opareshoni lidachotsa chotupa chake ndi zotupa zake ndikugwiritsa ntchito gawo la m'matumbo ake ang'onoang'ono kupanga "J-thumba." J-poch pamapeto pake imadzalowa m'malo mwa rectum yake.

Kuti amupatse nthawi kuti achiritse, dokotalayo adalumikiza kumapeto kwa matumbo ake ang'onoang'ono kutseguka kwakanthawi m'mimba mwake - stoma yomwe amatha kupatsira chopondera mu thumba la ileostomy.

Anamuchitanso opaleshoni yachiwiri mu Ogasiti 2016, pomwe gulu lake lochita opaleshoni linalumikizanso matumbo ake ang'ono ku J-poch. Izi zimamupangitsa kuti azidutsa mopepuka, popanda thumba la ileostomy.

Ntchito yoyamba idawononga $ 89,495. Malipiro amenewo sanaphatikizepo masiku asanu akusamalidwa mchipatala ndi mayeso omwe adalandira pambuyo pake, omwe adawononga $ 30,000 ina.

Ntchito yachiwiri idawononga $ 11,000, kuphatikiza $ 24,307 masiku atatu akusamalidwa mchipatala ndi kuyesa.

Meg adakhala masiku ena 24 mchipatala kuti akalandire chithandizo cha kapamba, pouchitis, ndi ileus pambuyo pa opaleshoni.Kutsalira kumeneku kumamuwononga ndalama zokwanira $ 150,000.

Ponseponse, Meg adagonekedwa m'chipatala kasanu ndi kamodzi mu 2016. Asanamalize ulendo wake, adafika kumapeto kwa chaka ndi omwe adamupatsa inshuwaransi kuti azigwiritsa ntchito ndalama m'thumba kuti azikhala mchipatala. Amangolipira $ 600 kuchipatala choyamba.

Kampani yake ya inshuwaransi idatenga tsamba lonselo - madola masauzande mazana ambiri kuchipatala komwe banja lake likadayenera kulipira ngati akanakhala kuti alibe inshuwaransi.

Kuyesa kosalekeza ndi chithandizo

Chiyambireni kuchipatala chomaliza ku 2016, Meg wakhala akumwa mankhwala kuti athetse vuto lake. Amakhalanso akudya moyenera, kumwa ma probiotic, ndikuchita yoga kuti matumbo ndi ziwalo zake zikhale zathanzi.

Palibe mankhwalawa omwe ndi okwera mtengo ngati kuchipatala, koma akupitilizabe kulipira ndalama zambiri pamalipiro a inshuwaransi pamwezi, zolipiritsa ndalama, komanso ndalama zolipirira chisamaliro.

Mwachitsanzo, amakhala ndi colonoscopy osachepera kamodzi pachaka kuyambira 2014. Pa njira zonsezi, amalipira $ 400 pamalipiro akunja. Anamuyezanso J-poch atamuyesa opaleshoni, zomwe zidamupatsa $ 1,029 pamalipiro athumba.

Amalandirabe infusximab ya infliximab kuti azichiza kupweteka kwa mafupa. Ngakhale kuti tsopano amalandira kulowetsedwa kamodzi milungu isanu ndi itatu m'malo mwa milungu isanu ndi umodzi iliyonse. Poyamba, sankalipira chilichonse mthumba pazithandizozi. Koma kuyambira mu 2017, chifukwa cha kusintha kwa mfundo zawo zokulirapo, wothandizira inshuwaransi yake adayamba kugwiritsa ntchito chindapusa.

Pogwiritsa ntchito njira yatsopano yopezera ndalama, Meg amalipira $ 950 m'thumba chifukwa cha kulowetsedwa kulikonse kwa infliximab komwe amalandira. Deductible yake yapachaka sikugwira ntchito pamilandu iyi. Ngakhale atamupeza deduedu, adzafunika kulipira madola masauzande pachaka kuti alandire mankhwalawo.

Amapeza yoga yothandiza kuthetsa ululu komanso kuchepetsa nkhawa. Kuchepetsa kupsinjika kwake kumamuthandiza kupewa kuyatsa. Koma kupita ku makalasi a yoga pafupipafupi kumatha kukhalaokwera mtengo, makamaka ngati mumalipira maulendo obwera m'malo modutsa mwezi uliwonse.

"Ndizotsika mtengo ngati mumagula mwezi wopanda malire, koma chimodzi mwazotsatira zandikhala ndi matenda ndikuti sindimva bwino kugula chilichonse chopanda malire kapena kugula zinthu pasadakhale. Chifukwa nthawi iliyonse ndikachita izi, ndimagonekedwa mchipatala kapena ndimadwala kwambiri kuti ndipite kapena kupezerapo mwayi pazomwe ndidagula. "

Meg amachita zambiri za yoga kunyumba, pogwiritsa ntchito pulogalamu ya $ 50 yafoni.

Kupeza ndalama

Ngakhale adakwanitsa kumaliza digiri yake yaukadaulo, Meg akuvutika kuti apeze ndikusunga ntchito kwinaku akuyang'anira zisonyezo za UC komanso zopweteka zophatikizika.

"Ndikadayamba kuganiza zopitanso pachibwenzi, ndimayamba kuganiza zosaka ntchito, chilichonse, kenako thanzi langa limayamba kuchepa," Meg adakumbukira.

Anakhala wodalira ndalama pa makolo ake, omwe akhala akumuthandiza kwambiri.

Athandizira kubweza mtengo wama mayeso ambiri ndi chithandizo chamankhwala. Iwo amulankhulira iye pamene anali kudwala kwambiri kuti asalankhulane ndi omwe amapereka chithandizo chamankhwala. Ndipo amupatsa chilimbikitso chamalingaliro kuti amuthandize kuthana ndi zovuta zomwe matenda osachiritsika akhala nazo pamoyo wake.

"Ndizovuta kwambiri kujambula chithunzi chowona, chonse cha zomwe kukhala ndi matenda ngati awa kumakuchitira iwe ndi banja lako," adatero Meg.

Koma zinthu zayamba kuoneka bwino. Popeza Meg adachotsedwa m'matumbo ndi m'matumbo, adakumana ndi zovuta zochepa za GI. Iye wawona kusintha ndi ululu wake wolumikizana.

“Moyo wanga ndi wabwino kwambiri 99%. Pali 1 peresenti yomwe wina amene akuyang'ana m'moyo wanga yemwe ali ndi thanzi labwino ndipo sanakhalepo ndi vuto lakugaya - angaganize kuti ndine wodwala. Koma m'malingaliro mwanga, zili bwino kwambiri. "

Meg wayamba kugwira ntchito kunyumba ngati wolemba payekha komanso wojambula zithunzi, zomwe zimamupatsa mphamvu kuti agwire ntchito komanso kuti agwire ntchito yayitali bwanji. Alinso ndi bulogu yazakudya, Meg is Well.

Pambuyo pake, akuyembekeza kuti adzadziyimira pawokha pazachuma kuti athe kusamalira yekha kukhala ndi matenda osachiritsika.

"Ndimadana nazo kuti makolo anga ayenera kundithandiza," adatero, "kuti ndine mayi wazaka 31 yemwe ndiyenera kudalira thandizo komanso thandizo lazachuma la makolo ake. Ndimadana nazo kwambiri, ndipo ndikufuna kuyesa kupeza njira yoti ndingotengera ndekha. ”