Ke kumukūʻai o ka noho ʻana me Hepatitis C: Ka moʻolelo a Connie

Anter

• Ka mālama ʻana i nā hopena ʻaoʻao
• Ke kali nei no ka loaʻa ʻana o nā lāʻau hou
• Ke uku nei no ka mālama
• ʻO nā kumukūʻai o nā hoʻāʻo a me ka mālama ʻana
• Ke kaua nei i ka stigma o ka maʻi

I ka 1992, ua hana ʻo Connie Welch i kahi ʻoki kino ma kahi kikowaena ma Texas. Ma hope ua ʻike ʻo ia ua loaʻa ʻo ia i ka maʻi hepatitis C mai kahi nila kolohe ʻoiai ma laila.

Ma mua o kāna hana, ua lawe kahi loea ʻoki lāʻau i kahi syringe mai kāna anesthesia tray, injected iā ia iho me ka lāʻau i loaʻa i loko, a hoʻopili ʻia i ka syringe me ka wai paʻakai ma mua o ka hoʻihoʻi ʻana i lalo. I ka hiki ʻana mai o ka manawa e hoʻowalewale ʻia ʻo Connie, ua ʻōkuhi ʻia ʻo ia me ka nila hoʻokahi.

I ʻelua mau makahiki ma hope mai, ua loaʻa iā ia kahi leka mai ke kikowaena ʻoki lāʻau: Ua hopu ʻia ka mea loea i ka ʻaihue ʻana i nā mea narcotic mai nā syringes. Ua hoʻāʻo pū kekahi ʻo ia no ka maʻi hepatitis C.

ʻO Hepatitis C kahi maʻi viral i kumu i ke ake ʻana o ka ate a me ka hōʻino. I kekahi mau hihia o ka hepatitis C huʻihuʻi, hiki i nā kānaka ke hakakā i ka maʻi me ka ʻole o ka lāʻau. Akā i ka hapanui o nā hihia, hoʻomohala lākou i ka hepatitis C mau loa - kahi maʻi lōʻihi loa e pono ai ka mālama ʻana me nā lāʻau antiviral.

Kuhi ʻia he 2.7 a 3.9 miliona mau kānaka ma ʻAmelika Hui Pū ʻIa i loaʻa i ka maʻi hepatitis C. He nui ka poʻe ʻaʻohe o lākou hōʻailona a ʻike ʻole ua loaʻa lākou i ka maʻi virus. ʻO Connie kekahi o kēia poʻe.

"Ua kāhea mai kaʻu kauka iaʻu a nīnau mai iaʻu inā ua loaʻa iaʻu kahi leka e pili ana i ka mea i hana ʻia, a ua ʻōlelo wau ua hana wau, akā ua huikau wau no ia mea," i haʻi aku ʻo Connie iā Healthline. "Ua ʻōlelo au," ʻAʻole anei wau e ʻike he hepatitis koʻu? '"

Ua paipai ke kauka o Connie iā ia e hoʻāʻo. Ma lalo o ke alakaʻi a kahi gastroenterologist a me ka hepatologist, ua ʻekolu mau hanana o ke koko i loaʻa iā ia. I kēlā me kēia manawa, ua hōʻoia maikaʻi ʻo ia no ka maʻi hepatitis C.

He biopsy ate kona. Ua hōʻike ʻo ia ua kākoʻo ʻo ia i ka hōʻino o ke ake akahai mai ka maʻi. Hiki i ka maʻi Hepatitis C ke hana i nā hōʻino a me nā scarring hiki ʻole ke hoʻoliʻiliʻi i ke ake, i ʻike ʻia ʻo cirrhosis.

Lawe ʻia i ʻelua mau makahiki, ʻekolu puni o ka mālama antiviral, a he mau kaukani kālā i uku ʻia mai ka ʻeke e hoʻomaʻemaʻe i ka maʻi mai kona kino.

Ka mālama ʻana i nā hopena ʻaoʻao

I ka loaʻa ʻana o Connie i kāna kuhi, aia hoʻokahi wale nō lāʻau antiviral no ka maʻi hepatitis C i loaʻa. I Ianuali 1995, ua hoʻomaka ʻo ia e loaʻa nā injection o non-pegylated interferon.

Ua hoʻomohala ʻo Connie i nā hopena ʻino loa "mai ka lāʻau. Ua hakakā ʻo ia me ka luhi nui, nā ʻeha a me nā ʻeha pū, nā ʻōpū o ka ʻōpū, a me ka nalo ʻana o ka lauoho.

"Ua ʻoi aku ka maikaʻi o kekahi mau lā ma mua o kekahi," i hoʻomanaʻo ʻo ia, "akā no ka hapa nui, ua koʻikoʻi ia."

He paʻakikī paha e kāohi i kahi hana manawa piha, i ʻōlelo ʻo ia. Ua hana ʻo ia i mau makahiki ma ke ʻano he loea lapaʻau loea a me ka mea kōkua hanu. Akā ua haʻalele ʻo ia ma mua iki o ka hoʻāʻo ʻia ʻana no ka maʻi hepitis C, me nā hoʻolālā e hoʻi i ke kula a alualu i kahi kekelē kahu maʻi - nā hoʻolālā āna i hoʻopaʻa ai ma hope o ka ʻike ʻana ua loaʻa ʻo ia i ka maʻi.

Ua paʻakikī ia e hoʻokele i kāna kuleana ma ka home ʻoiai ke kūleʻa ʻana i nā hopena o ka lāʻau. Aia kekahi mau lā ke paʻakikī e hele i waho o kahi moe, waiho wale i ka mālama ʻana i ʻelua mau keiki. Ua komo i loko nā hoaaloha a me nā ʻohana e kōkua me ka mālama keiki, nā hana o ka hale, nā hana, a me nā hana ʻē aʻe.

"He makuahine manawa piha wau, a ua hoʻāʻo wau e hana i nā mea āpau ma ka home e like me ka mea maʻamau no kā mākou hana maʻamau, no kā mākou poʻe keiki, no ke kula, a me nā mea āpau," hoʻomanaʻo ʻo ia, "akā aia kekahi mau manawa pono wau e loaʻa kōkua. "

ʻO ka mea pōmaikaʻi, ʻaʻole pono ʻo ia e uku no ke kōkua keu. "He nui a mākou nā hoa aloha a me ka ʻohana i komo i loko o ke ʻano kōkua, no laila ʻaʻohe kumu kūʻai kālā no kēlā. Mahalo wau i kēlā. ”

Ke kali nei no ka loaʻa ʻana o nā lāʻau hou

I ka wā mua, ua holo pono nā kuʻina o ka interferon non-pegylated. Akā i ka hopena, ua kūleʻa kēlā puni mua o ka mālama antiviral. Ua kuʻi hou ʻia ka helu viral a Connie, ua hoʻonui ʻia ka helu o ka enzyme ate, a ua nui loa ka hopena o ka lāʻau i hiki ke hoʻomau.

Me ka loaʻa ʻole o nā koho lapaʻau ʻē aʻe, kali ʻo Connie i mau makahiki ma mua o ka hiki iā ia ke hoʻāʻo i kahi lāʻau hou.

Ua hoʻomaka ʻo ia i kāna kaʻina ʻelua o ka mālama antiviral ma 2000, e lawe ana i kahi hui o pegylated interferon a me ribavirin i ʻae ʻia no nā poʻe me ka maʻi hepatitis C.

ʻAʻole kūleʻa kēia hana.

Eia hou, ua kali ʻo ia i mau makahiki ma mua o ka loaʻa ʻana o kahi lāʻau hou.

I ka hala ʻana o ʻumikūmālua mau makahiki, i ka makahiki 2012, ua hoʻomaka ʻo ia i kāna kolu a me ka hope o ka lawelawe antiviral. Hoʻokomo ʻia kahi hui o pegylated interferon, ribavirin, a me telaprevir (Incivek).

"Ua nui ke kumukūʻai no ka mea ʻoi aku ka pipiʻi o kēlā lapaʻau ma mua o ka hana mua, a i ʻole nā ​​mālama mua ʻelua, akā pono mākou e hana i nā mea e pono ai mākou e hana. Pōmaikaʻi loa wau i ka holo pono ʻana o ka mālama ʻana. ”

I nā hebedoma a me nā mahina ma hope o kāna kolu o ka hana antiviral lapaʻau, ua hōʻike ʻia nā hoʻokolohua koko he nui ua loaʻa iā ia kahi pane viral kākoʻo (SVR). Ua heleleʻi ka maʻi i kahi pae ʻike ʻole ʻia i loko o kona koko a noho mau ʻole ʻia. Ua hoola ʻia ʻo ia e ka maʻi hepatitis C.

Ke uku nei no ka mālama

Mai ka manawa i loaʻa ai iā ia ka maʻi ma 1992 a hiki i ka manawa i hoʻōla ʻia ai ʻo ia ma 2012, ua uku ʻo Connie a me kona ʻohana he tausani mau kālā mai ka ʻeke no ka mālama ʻana i ka maʻi hepitis C.

"Mai ka 1992 a hiki i ka 2012, he 20 mau makahiki kēlā, a pili i ka nui o ka hana koko, ʻelua biopsies o ke ake, ʻelua mau lapaʻau maikaʻi ʻole, kipa ke kauka," wahi a ia, "no laila he nui ke kumukūʻai."

I kona ʻike mua ʻana ua loaʻa ʻo ia i ka maʻi hepitis C, ua laki ʻo Connie i ka ʻinikua olakino. Ua kūʻai aku kona ʻohana i kahi hoʻolālā inikua i kākoʻo ʻia e ka haku ma o ka hana a kāna kāne. ʻOiai nō naʻe, ua hoʻomaka koke ke kumukūʻai o waho o ka ʻeke i ka hōʻiliʻili ʻana "wikiwiki.

Ua uku lākou ma kahi o $ 350 i kēlā me kēia mahina i nā uku ʻinikua a he $ 500 ka mea i unuhi ʻia i kēlā me kēia makahiki, a lākou e hui ai ma mua o ke kōkua ʻana o kā lākou mea ʻinikua i ka uku o kāna mālama.

Ma hope o kona kuʻi ʻana i ka unuhi makahiki, ua hoʻomau ʻo ia i ke alo o ka $ 35 copay charge no kēlā me kēia mākaʻikaʻi i kahi loea. I nā lā mua o kāna kuhi a me kāna lāʻau lapaʻau, ua hui ʻo ia me kahi gastroenterologist a i ʻole hepatologist e like me hoʻokahi manawa i kēlā me kēia pule.

I hoʻokahi manawa, ua hoʻololi kona ʻohana i nā hoʻolālā ʻinikua, akā wale nō e ʻike ua hāʻule kāna gastroenterologist ma waho o kā lākou pūnaewele ʻinikua hou.

"Ua haʻi ʻia mai iā mākou e hele ana kaʻu gastroenterologist o kēia manawa ma kahi hoʻolālā hou, a ʻike ʻia ʻaʻole ia. A he mea pīhoihoi loa kēlā no ka mea pono wau e loaʻa i kahi kauka hou i kēlā manawa, a me kahi kauka hou, ʻano like ʻoe me ka hoʻomaka hou ʻana. "

Hoʻomaka ʻo Connie e ʻike i kahi gastroenterologist hou, akā ʻaʻole ʻo ia i hōʻoluʻolu i ka mālama āna i hāʻawi ai. No laila ua hoʻi ʻo ia i kāna loea mua. Ua pono ʻo ia e uku mai ka ʻeke e kipa iā ia, a hiki i ka hiki i kona ʻohana ke hoʻololi i nā hoʻolālā ʻinikua e hoʻihoʻi iā ia i kā lākou kikowaena o ka uhi.

"Ua ʻike ʻo ia ʻaʻole mākou i kahi manawa o ka ʻinikua ʻole e uhi iā ia," i ʻōlelo ʻo ia, "no laila ua hāʻawi ʻo ia iā mākou i kahi uku hōʻemi."

"Makemake wau e ʻōlelo i hoʻokahi manawa ʻaʻole ʻo ia i uku mai iaʻu no kekahi o nā mākaʻikaʻi o ke keʻena," hoʻomau ʻo ia, "a laila ʻo nā mea ʻē aʻe ma hope o kēlā, ua hoʻopiʻi wale ʻo ia iaʻu i ka mea aʻu e uku ai i ka copay.

ʻO nā kumukūʻai o nā hoʻāʻo a me ka mālama ʻana

Ma waho aʻe o nā uku copay no nā kipa ʻana a ke kauka, ua uku ʻo Connie a me kona ʻohana i ka 15 pākēneka o ka pila no kēlā me kēia hōʻike lapaʻau i loaʻa iā ia.

Ua loaʻa iā ia nā hoʻokolohua koko ma mua, i ka wā, a ma hope o kēlā me kēia puni o ka mālama antiviral. Ua hoʻomau ʻo ia i ka hana ʻana o ke koko i hoʻokahi manawa i ka makahiki no ʻelima mau makahiki ma hope o ka loaʻa ʻana o ka SVR. Ma muli o nā hoʻokolohua e pili ana, ua uku ʻo ia ma kahi o $ 35 a $ 100 no kēlā me kēia puni o ka hana koko.

Ua loaʻa iā Connie i ʻelua mau biopsies ate, a me nā hōʻike ultrasound makahiki o kona ake. Uku ʻia ʻo ia ma kahi o $ 150 a ʻoi paha no kēlā me kēia hōʻike ultrasound. I loko o kēlā mau hoʻokolohua, nānā kāna kauka no nā hōʻailona o ka cirrhosis a me nā pilikia kūpono ʻē aʻe. ʻOiai i kēia manawa ua hoʻōla ʻia ʻo ia i ka maʻi hepatitis C, ua piʻi ʻo ia i ka makaʻu i ka loaʻa ʻana i ka maʻi ʻaʻai ate.

Ua uhi pū kona ʻohana i ka 15 pākēneka o ke kumukūʻai o ʻekolu puni o ka hana antiviral i loaʻa iā ia. ʻO kēlā me kēia puni o ka mālama ʻana he ʻumi kaukani kālā ma ka huina, me ka ʻāpana i hāʻawi ʻia i kā lākou mea inikua.

"Maikaʻi ʻole ka ʻumikūmālima pākēneka o 500," i ʻōlelo ai ʻo ia, "akā he 15 pākēneka o nā kaukani he hiki ke hoʻohui."

Ua kū pū ʻo Connie a me kona ʻohana i nā uku no nā lāʻau lapaʻau e mālama i nā hopena o kāna lāʻau. Hoʻopili kēia i nā lāʻau anti-hopohopo a me nā injection e hoʻonui iā ia i ka helu ʻulaʻula o ke koko. Ua uku lākou no ke kinoea a me ke kaʻa kaʻa e hele ai i nā koho lapaʻau he nui. A uku lākou i ka ʻai ma mua o ka wā maʻi a maʻi paha a i ka manawa a nā kauka i koho ai e kuke.

Ua loaʻa iā ia nā kumukūʻai naʻau.

“ʻO ka Hepatitis C e like me ka ripple i ka loko iʻa, no ka mea pili ia i kēlā me kēia wahi o kou ola, ʻaʻole wale ma ke kālā. Pili ia iā ʻoe ka noʻonoʻo a me ka naʻau, me ke kino. ”

Ke kaua nei i ka stigma o ka maʻi

Nui nā poʻe i kuhi hewa e pili ana i ka hepatitis C, i hāʻawi i ka stigma e pili pū ana me ia.

ʻO kahi laʻana, ʻaʻole maopopo i ka poʻe he nui ke ala e hiki ai i kekahi ke hoʻouna i ka maʻi ma o ka pili koko-a-koko. A makaʻu ka hapa nui i ka hoʻopā a i ʻole ke hoʻolilo manawa ʻana me kekahi mea i loaʻa i ka maʻi virus. Hiki i kēlā mau makaʻu ke alakaʻi i nā hoʻokolokolo maikaʻi ʻole a hoʻokae ʻē paha i ka poʻe e noho pū ana me ia.

No ke kū ʻana i kēia mau hālāwai, ua ʻike ʻo Connie he mea kōkua ke aʻo aku i nā poʻe ʻē aʻe.

"Ua ʻeha koʻu mau manaʻo i kekahi mau manawa e kekahi poʻe," i ʻōlelo ʻo ia, "akā ʻo ka ʻoiaʻiʻo, ua lawe wau i kēlā manawa i manawa kūpono e pane i nā nīnau a kekahi poʻe e pili ana i ka maʻi virus a hoʻopau i kekahi mau kaʻao e pili ana i ka hana ʻana i ka ʻaelike a pehea ʻaʻole ia . ”

Hana ʻo ia i kēia manawa ma ke ʻano he aʻoaʻo aʻoaʻo hoʻomanawanui a hōʻoia hoʻi i ke ola, kōkua i ka poʻe e hoʻokele i nā pilikia o ka maʻi ate a me ka maʻi hepatitis C. Kākau pū ʻo ia no kekahi mau puke, me kahi pūnaewele hilinaʻi e mālama ai, Life Beyond Hep C.

ʻOiai he nui ka poʻe e kū nei i nā pilikia i ke ala i kahi hōʻailona a me ka mālama ʻana, manaʻo ʻo Connie he kumu no ka lana.

"ʻOi aku ka manaʻolana i kēia manawa e hele i mua o ka hep C ma mua o ka wā ma mua. Hoʻi i ka wā i hōʻoia ʻia au, hoʻokahi wale nō lāʻau. I kēia lā, ʻehiku mau ʻano lapaʻau ʻē aʻe no ka hepatitis C o nā genotypes ʻeono. ”

"Loaʻa ka manaolana no nā mea maʻi a ʻoiai me ka cirrhosis," hoʻomau ʻo ia. "Aia kekahi mau ʻenehana kiʻekiʻe hou aʻe i kēia manawa i hiki ke kōkua i nā mea maʻi e ʻike wawe ʻia me ka hōʻino o ke ake. Aia wale nō nā mea hou aku i kēia manawa no nā mea maʻi ma mua o ka wā. "