E Koho Nui ʻIa Ana Ka Hoʻomaʻemaʻe Koko ʻAna Ma Ka Hale, A Eia Mai Nō Ke Kumu
This story was produced with support from the USC Annenberg Center for Health Journalism’s 2022 Impact Fund for Reporting on Health Equity and Health Systems.
Other stories by her include:
Pacific Islanders Have a Harder Time Getting Kidney Transplants Than Other Patients
Native Hawaiians Face High Rates of Diabetes. That Means More Need for Dialysis
A Coastal Road Connects These Patients To Dialysis. Climate Change Could Make That Harder
State Rules Make It Harder To Open Dialysis Centers In Hawaii
State Greenlights New Dialysis Center In Kahului
The Pandemic Vastly Expanded Health Care Access In This US Territory. That May End Soon
To read this story in English, click here.
Hāpai ʻo Kevin Kalani Pagan i ka pahu papakaumaka keʻokeʻo ma ka lima e hōʻike aku ana i kona mīkā koko, a kiʻei kāna wahine ʻo Kim ma luna o ko ia ala poʻohiwi me ke kikokiko ʻana i nā helu olakino ma kahi ʻīpapa uliuli.
ʻO Pagan, he 48 ona makahiki, ke noho nei ʻo ia ma kahi lumi ma St. Francis Medical Center ma Honolulu, a moe hiō nā kiupe koko ma kona ʻūhā i hoʻopili ʻia i kahi mīkini hoʻomaʻemaʻe koko keʻokeʻo e kani aʻe ana.
ʻO kēia ka lā ʻelua o ka lua o ka pule no ka hoʻomaʻamaʻa ʻana i ka hoʻohana mīkini ʻana. I loa nō a hala ʻelima mau pule, e lawe aku ana nā kōkoʻolua i ka mīkini i ko lāua home ma Molokaʻi, ʻo ia kahi a Pagan a me kāna wahine e mālama ai i ka hana lapaʻau ʻana no lāua iho.
Ke komo nei ʻo Pagan i kahi hui liʻiliʻi e nui aʻe ana, ʻo ia kahi hui o nā mea maʻi e hoʻomaʻemaʻe koko ʻia ma Hawaiʻi a me ke aupuni e hele ʻole i ke keʻena i ʻekolu mau manawa i kēlā me kēia pule e hoʻomaʻemaʻe ʻia ai ke koko.
Ke māhuahua aʻe nei ka nui o nā keʻena hoʻomaʻemaʻe koko ma Hawaiʻi, a he pane nō ia i ka nui o ka maʻi hakuʻala kuluma a me ka hoʻāʻo ʻana a U.S. Renal Care e hoʻopālua i kāna mau keʻena ma o ka mokuʻāina i ka makahiki 2023.
Hoʻoponopono ʻo Kim Pagan i ka mīkini ana mīkā koko no kāna kāne ma ko ia nei hoʻomaʻamaʻa ʻana i ka mīkini hoʻomaʻemaʻe koko ma ka hale.
Akā, ʻōlelo naʻe kekahi mau kauka hakuʻala, ʻo ka hoʻomaʻamaʻa ʻia ʻana o nā mea maʻi i ka hoʻomaʻemaʻe ʻana i ko lākou koko ponoʻī ma ka hale, he makepono nō ia e hiki ke hōʻoi i ka hopena o ka mea maʻi a me ka maikaʻi o ke ola. He koʻikoʻi nō kēlā i nā Kānaka Maoli e like me Pagan e hoʻopilikia ʻia nei e ka helu nui o ka loaʻa maʻi kōpaʻa, ʻo ia hoʻi kekahi kumu o ka pilikia hakuʻala e pono ai ka hoʻomaʻemaʻe koko ʻia ʻana.
Ma o ka mokuʻāina a me nā nui makahiki like ʻole, he 9% a ʻoi ka nui o ke kanaka maʻi kōpaʻa ma o nā kamaʻāina a pau ma ka makahiki 2019, a he 15% ia no nā Kānaka Maoli a he 18% ia no nā poʻe Pakipika ʻē aʻe.
He pono ke kalaiwa a me ka holo kaʻa ʻana o kekahi mau mea maʻi no hoʻokahi hola a ʻoi i hiki iā lākou ke hele i nā hālāwai hoʻomaʻemaʻe koko i ʻekolu mau manawa o kēlā me kēia pule. ʻO kekahi ʻē aʻe, neʻe lākou i kahi kokoke i ke keʻena no ka hōʻalo ʻana i ka huakaʻi loa ʻana, i loko nō o ka haʻalele ʻana i ka ʻohana a me ke kaiāulu o lākou me ka minamina.
A, i loko nō o ka hoʻolaha ʻia ʻana aʻe o nā kikowaena hoʻomaʻemaʻe koko, ua lohi loa ke kaʻina hana no nā makahiki he nui i ka hoʻāpono ʻia ʻana e ke aupuni, ka loaʻa ʻana o ka palapala ʻae, a me ka hoʻopau ʻana i ke kūkulu ʻana.
ʻŌlelo akula ʻo Shiuh-Feng Sherwin Cheng, he kauka hakuʻala ʻo ia ma ke Kidney Clinic of Hawaiʻi, ua hoʻololi ʻia kona manaʻo i ka hoʻomaʻemaʻe koko ʻana ma ka hale ma o nā makahiki i hala aku nei.
Ua paipai mua ʻo ia i ke koho no nā paʻahana uʻi wale nō. ʻĀnō, penei kona nīnau ʻana iā ia iho, “No ke aha e hana ʻole ai pēlā?”
Ua Mākaukau E Hāʻawi Pio
No Pagan, ʻaʻole i kana mai kona mākaukau i ka hiki ʻana ke hoʻomaʻemaʻe koko ma ka hale.
Ma ka piha ʻana o ka makahiki 18 iā ia, ua loaʻa iā ia ka maʻi hakuʻala polycystic a me ka pākela koko piʻi, a ma ka piha ʻana o ka makahiki 23 iā ia, loaʻa iā ia ka maʻi kōpaʻa.
Ua hoʻomaka ʻo Pagan i ka hoʻomaʻemaʻe koko ʻana ma ka makahiki 2007 ma hope o ka hoʻopilikia ʻia ʻana e nā pilikia hakuʻala. Ua hala nā makahiki he nui ma mua o kona ʻae ʻana i ka lilo ʻana o kēia hana lapaʻau i māhele paʻa o kona nohona hou. Ua ala ʻo ia ma ka hola 4 o ke kakahiaka nui no ka hele ʻana he hapalua hola i ka hālāwai hoʻomaʻemaʻe koko ma mua o kona hele ʻana i ka hana ma ke ʻano he kākauʻōlelo keʻena ʻo ia ma ke kula haʻahaʻa o Maunaloa.
He hoʻoluhi nō ia, a ma hope iho, ua hoʻololi ʻo ia i kona mau hālāwai i ka ʻauinalā. Eia naʻe, mau nō ka hoʻoluhi ʻana, a pā pinepine maila ka hailaka muku ʻeha loa. Ua ʻike ʻo ia ma o nā makahiki i hala akula, ua hele a paʻapū ke kikowaena hoʻomaʻemaʻe koko, a ua hoʻopūlale ʻia nā kahu maʻi. Ma kekahi manawa, ua hiamoe ihola ʻo ia, a ma kona ala ʻana aʻe, ua ʻike ʻo ia i kahi hāloko koko — e kulu ana kāna mau kiupe me ka ʻole o ka nānā ʻana o haʻi.
ʻO Linda Tsui, he kahu maʻi i hoʻopaʻa ʻia, ke aʻo aku nei ʻo ia iā Kevin Kalani Pagan i ka hoʻomaʻemaʻe ʻana i kona koko ponoʻī ma o kahi mīkini e noho hale. Ekolu hola ka lōʻihi o ka hana.
ʻElua ʻano o ka hoʻomaʻemaʻe koko ʻana ma ka hale — ʻo ka peritoneal dialysis a me ka hemodialysis. ʻO ka hapanui o nā mea maʻi e hoʻomaʻemaʻe koko ma ka hale, hoʻohana lākou i ka peritoneal dialysis, ʻo ia he kaʻina hana e hoʻokahe aku i kahi wai lapaʻau i ka ʻōpū. ʻOi aku ka lōʻihi o ka hana hemodialysis, a he pono ka hana ʻana i nā lā a pau. Akā, manaʻo kekahi mau mea maʻi, ʻoi aku ka mālie o ka hana i ko lākou mau kino, a hiki ke hana ʻia ma ko lākou hiamoe ʻana.
Nīele ʻo Pagan i ke kuapo ʻana i ka peritoneal dialysis i mau makahiki aku nei, akā ua haʻi ʻia ʻo ia, nui ʻino nā ʻaʻaʻa ʻālina ma kona ʻōpū, a ʻaʻole hiki iā ia ke hana i kēlā ʻano hana. ʻAʻole ʻo ia i ʻike i ka hana hemodialysis ʻana ma ka hale a hiki i kēia Mei, ʻo ia ka wā āna e māluhiluhi loa ai i ka hoʻomaʻemaʻe koko ʻana, a ua makemake ʻo ia e hoʻokū ʻokoʻa i kēlā hana lapaʻau, a he mea ʻole kona mālama ʻia ʻana ma kahi haukapila kupuna ma ka wā ma hope.
He kanaaho nō ka nūhou no nā koho ʻē aʻe. I hoʻokahi pule ma hope aku o ka pau ʻana o ka makahiki kula ma ka lā 27 o Mei, ua lele akula lāua ʻo Kim i Oʻahu no ka hoʻomaʻamaʻa ʻana.
E Kaulana Ana
He koho ka hoʻomaʻemaʻe koko ʻana ma ka hale no kekahi mau kekeke, akā ua nui aʻe kona kaulana ma o nā makahiki i hala aku nei ma muli o ka hōʻoi ʻia ʻana o ka ʻenehana, a ua hōʻike hoʻi ka noiʻi, ua pili ka hana i ka hōʻoi ʻana i nā hopena o nā mea maʻi.
Ua lilo nō ia i mea ʻumeʻume i ka nui ʻana aʻe o ke kumukūʻai no Medicare i pili i ka hoʻomaʻemaʻe koko. Ua hoʻoholo ka Pelekikena ʻo Donald Trump i kahi kauoha hoʻokō ma ka makahiki 2019 e hoʻomaʻemaʻe koke aku ai he 80% o nā mea maʻi ma ka hale ma ka makahiki 2025.
Ma kēlā manawa, he 13% ka nui o nā mea maʻi ma ʻAmelika e hoʻomaʻemaʻe koko ana ma ka hale, a he 9% ka nui ma ka makahiki 2009, wahi a ka U.S. Renal Data System.
Ma hope o ka hala ʻana o hoʻokahi makahiki, ua hoʻonui kā Trump papa luna hoʻokele i ka hoʻihoʻi kālā ʻana a Medicare no ka hoʻomaʻemaʻe koko ʻana ma ka hale e hōʻumeʻume ʻia ai nā hui ʻoihana hoʻomaʻemaʻe koko e paipai i ka mālama ʻana ma ka hale.
Ma Hawaiʻi nei, ʻōlelo akula ko ka mokuʻāina mau keʻena hoʻomaʻemaʻe koko nui loa, ke ulu nui aʻe nei ka hoʻomaʻemaʻe ʻana ma ka hale. Wahi a nā luna no U.S. Renal Care, he 14% ka nui o kā lākou mau mea maʻi e hoʻomaʻemaʻe koko ana ma ka hale.
Ma Fresenius Kidney Care, ʻo ia ke mālama iā Liberty Dialysis, he 17% ka nui, ʻo ia kahi helu i lele aʻe he 18% a ʻoi ma o nā makahiki ʻekolu i hala aku nei. Makemake ka hui ʻoihana i 25% o kā lākou mau mea maʻi ma o ke aupuni e hoʻomaʻemaʻe koko ma ka hale ma ka makahiki 2025.
Ke Kākoʻo ʻAna I Nā Mea Maʻi
ʻO nā kauka hakuʻala e like me Cheng a me Rick Hayashi, makemake lākou i ka lilo ʻana o ka hoʻomaʻemaʻe koko ʻana ma ka hale i koho mua loa ma kahi o ke koho hope loa na nā mea maʻi.
Ma mua, he pālua ka nui o nā mīkini hoʻomaʻemaʻe koko ma ka hale, akā ua lilo ia i mea i hiki ke halihali ʻia ma o ka hōʻoi ʻia ʻana o ka ʻenehana.
ʻŌlelo ʻo Hayashi, ʻo ia kai hānai ʻia ma Maui a ʻo ia ke hana ma Oʻahu a me Hawaiʻi, ʻo nā mea maʻi e hoʻomaʻemaʻe koko ana ma ka hale, e hoʻolōʻihi ʻia nō paha ko lākou mau ola, a ʻaʻole nō paha lākou e hoʻouna ʻia i ka haukapila.
ʻO kekahi kumu no kēlā, ʻo ia ka pinepine o ka hoʻomaʻemaʻe koko ʻana, a ua like ua pinepine nei me ka hana maʻamau o ka hakuʻala.
Hoʻomaʻalahi ka hana ma ka hale i ka hiki ʻana o ka mea maʻi e hana kekahi.
Ua kuhi akula ʻo Cheng, ʻo kāna mau mea maʻi he loio, he mea kalaiwa no Uber, a he paʻahana ma Panda Express.
ʻO Catherine Heflin, ʻo ia kahi o kā Hayashi mea maʻi, ua holo ʻo ia ma kahi moku hoʻomākaʻikaʻi ʻo Diamond Princess ma ka makahiki 2020 ma kona lilo ʻana, ʻo ia kekahi o nā kānaka ʻAmelika mua i loaʻa ai ʻo Covid. Ua hoʻopaʻa ʻia ʻo ia ma kahi haukapila ma Iapana no ʻekolu mau mahina, a ua hoʻomaka ʻo ia i ka hoʻomaʻemaʻe koko ma Pepeluali i ka makahiki 2020.
ʻO ke kamaʻāina no ʻAiea, he 75 ona makahiki, a ke hana nei ʻo ia i ka peritoneal dialysis no ʻeiwa a ʻumi mau hola ma o ka pō i mau manawa i kēlā me kēia pule, a ʻōlelo ʻo ia, ʻo ka makepono nui o kēia hana, ʻo ia nō ka hiki ʻana ke hana me ka nānā ʻole ʻia ʻana.
“Lahilahi koʻu hiamoe ʻana, no laila, hiamoe au ma ka hapanui o ka hoʻomaʻemaʻe ʻana, akā ʻaʻole nō wau e hōʻike ʻia,” wahi āna.
ʻŌlelo ʻo Hayashi, pinepine nō kāna ʻōlelo ʻana i nā mea maʻi, nui ke kākoʻo ma ka hoʻomaʻemaʻe koko ʻana ma ka hale. Ma luna aʻe o ka hoʻomaʻamaʻa ʻana, hiki i nā kahu maʻi ke nānā i ka ʻikepili i ka holo kūpono ʻana o ka hana lapaʻau ʻana, a hāʻawi nā hui ʻoihana hoʻomaʻemaʻe koko i ke kākoʻo ʻana ma o ke kelepona i nā hola a pau.
“Aʻole mākou e hāʻawi wale aku i ka mīkini me ka ʻōlelo ʻana penei, “I laki maikaʻi iā ʻoe,” wahi āna.
Nā Hihia
ʻAʻole nō paha maʻalahi kēia hana. No Kim Pagan, ʻo ka ʻimi ʻana i kahi kūpono e hou ai ka hou kui a me ka hoʻoponopono ʻana i ka mīkini a me ke kiupe e holo pono ai nā mea, he mea hoʻoluhi nō ia.
“He mea nunui kēia,” wahi āna ma kona noho ʻana i ka lumi o kāna kāne e kakali ana i ka hoʻopau ʻia ʻana o ka hana lapaʻau ʻana.
ʻAʻole kēia no nā kānaka a pau. Ma ka pae haʻahaʻa loa, he pono ka loaʻa ʻana o kahi home kūpaʻa no ka mīkini e noho ai. A he pono kahi e mālama ʻia ai ka wai lapaʻau no ʻelua mau pule.
ʻO Kim Pagan, ʻo ia ka wahine a Kalani Pagan, nānā ʻo ia i ka mīkini hoʻomaʻemaʻe koko me ka ʻole o ka uea ma o kahi ʻīpapa. Hiki i ka ʻikepili ke ʻike ʻia e nā limahana kahu ola ma Oʻahu.
Ua holoi nā Pagan i kahi lumi holoʻokoʻa ma ko lāua hale, a he lumi kanaka ʻole kona ma muli o ka nui ʻana aʻe o kā lākou mau keiki. Ua kūʻai maila lāua i kahi mīkini hōʻolu ea e mau ai ka ʻoluʻolu o ka lumi ma ka mālama ʻia ʻana o ka wai lapaʻau.
ʻAʻole like ka hiki ʻana o nā ʻohana ʻōiwi Pakipika ʻē aʻe, ʻo ia hoʻi nā kānaka e alo ana i ka helu nui o ka ʻilihune a me ka paʻapū ʻana ma Hawaiʻi. Manaʻo ʻo Cheng, e hoʻokaʻawale kēlā i nā mea maʻi i ka hiki ʻana ke hoʻomaʻemaʻe koko ma ka hale.
ʻO nā ālaina ʻōlelo, ʻo ia hoʻi kahi mea e hoʻohihia i nā mea maʻi a pau ma ke aʻo ʻana mai a ma ka lapaʻau ʻia ʻana. ʻŌlelo akula ʻo Mabel Cheng-Leung, ʻo ia ka luna mākeke lapaʻau home no Fresenius Kidney Care, ua lawe maila ka hui ʻoihana i nā mea unuhi e hoʻomaʻamaʻa aku i nā ʻohana Chuukese ma ka hoʻomaʻemaʻe koko ʻana ma ka hale. Akā, ʻaʻole hiki ke loaʻa mai kahi mea unuhi i kēlā me kēia manawa.
ʻO nā mea maʻi i hiki ʻole ke neʻe nui a me nā mea maʻi e noho mehameha, he pono nō paha ko lākou ʻimi ʻana i kahu ola no ka hoʻokele ʻana i ka hana. Inā hana pono ʻole ʻia nā hou kui a me nā kiupe, hiki ke hele a palahēhē, a ʻo ka hoʻouna ʻia akula nō ia o ka mea maʻi i ka haukapila.
ʻO ka hopena minamina penei, ʻaʻole hiki i nā kānaka a pau ke hoʻomaka i ka hana, a no nā kānaka e hoʻomaka ana, ʻaʻole lanakila nā kānaka a pau. Ma U.S. Renal Care, hoʻomaka kā lākou mau mea maʻi he 40% ma o ke aupuni i ka hoʻomaʻemaʻe koko ma ka hale, akā hoʻi pono lākou i ka hana ʻana ma ke keʻena.
ʻO ka palahēhē a me ka pauaho o ka mea maʻi, ʻo ia nā kumu nui o ke koho ʻana a nā mea maʻi i ka hoi keʻena ʻana, wahi a Waraporn Anantiyo, ʻo ia ka hope pelekikena o Home Therapies ma U.S. Renal Care.
He Hoʻāʻo Hou No Ke Ola ʻAna
Ma Hawaiʻi naʻe, he 24% wale nō ka nui o nā kānaka e hoʻi hou i ka hoʻomaʻemaʻe koko ʻana ma ke keʻena, wahi a Anantiyo. Kuhi ʻo ia i ka hoʻomaʻamaʻa maikaʻi loa no ka helu “ʻoi kelakela” o nā kānaka e noho paʻa ma ka ʻoihana.
Lana ka manaʻo o nā Pagan, e lilo ana ko lāua moʻolelo i moʻolelo lanakila. ʻIke ʻē ʻo Kim i ka hōʻeleu ʻia ʻana o kāna kāne e ka hoʻonui ʻana i ka pinepine a me ka pōkole o nā hālāwai hoʻomaʻemaʻe koko.
No ka wā lōʻihi, ua kau palena ʻia ko lāua ola i ka papa kuhikuhi manawa hoʻomaʻemaʻe koko. Ua hoʻolālā ʻia nā huakaʻi a pau ma ʻAmelika me ka noʻonoʻo mua ʻana i ka hōʻea keʻena ʻana ma ka hola kūpono, i hiki iā Kalani ke komo i kona mau hālāwai.
ʻĀnō, ua kūnoa ko lāua mau ola. ʻŌlelo ʻo Cheng, ʻo kāna mau mea maʻi e kipa iā Las Vegas, e hoʻouna ʻia ka wai lapaʻau i ko lākou hōkele ponoʻī.
No Kim, he pōmaikaʻi kēia manawa kūpono, he hoʻāʻo hou ia no ke ola ʻana.
“ʻOi aku ka maikaʻi o kona ʻano,” wahi āna. “E maikaʻi ana nō kēia.”
Ua hoʻopuka ʻia kēia moʻolelo ma o ke kākoʻo ʻia ʻana e ka USC Annenberg Center for Health Journalism’s 2022 Impact Fund no ke kūkala nūhou ʻana i ke Kaulike Olakino a me nā ʻŌnaehana Olakino, a me kahi kākoʻo Civil Beat ʻo Dr. Mary Therese Perez Hattori.
Ua kākoʻo ʻia kēia papahana e ka ʻOhana o Harry Nathaniel, Levani Lipton, ka ʻOhana Mar, a me Lisa Kleissner.
[This article was originally published by Honolulu Civil Beat.]