Aloha! I kēia lā, e kamaʻilio mākou e pili ana i kahi lāʻau lapaʻau paʻakikī iki, akā he mea nui loa. Inā ʻoe a i ʻole kekahi o kou ʻohana he maʻi i kapa ʻia ʻo Cystic Fibrosis, ua kuhikuhi paha kāu kauka i kahi lāʻau lapaʻau i kapa ʻia ʻo Trikafta. Loaʻa iā ia ka hui pū ʻana o ʻekolu mau lāʻau lapaʻau i kapa ʻia ʻo Elexacaftor, Tezacaftor, a me Ivacaftor. ʻAʻole like kēia me ka lāʻau lapaʻau maʻamau, akā he lāʻau lapaʻau kūikawā e hele ana i ke kumu o ka maʻi a hoʻopilikia iā ia. No laila e nānā kākou pehea e hoʻohana pono ʻia ai kēia lāʻau lapaʻau, nā mea e makaʻala ai, a me nā hopena ʻaoʻao e hiki ai ke hana.
He aha ka mea e hana maoli me kēia lāʻau lapaʻau?
I ka ʻōlelo maʻalahi, ʻo Cystic Fibrosis kahi maʻi hoʻoilina e hoʻoulu ai i nā wai kino like ʻole, ʻoiai ka mucus i loko o nā ʻōkana e like me nā māmā a me ka pancreas, e lilo i mānoanoa loa a pipili. Hiki i kēia ke alakaʻi i nā pilikia hanu, nā maʻi māmā, a me nā pilikia ʻōpū.
Hana kēia lāʻau lapaʻau, ʻo Trikafta, ma ka hoʻoponopono hapa ʻana i kahi protein e hana pono ʻole ana i nā poʻe maʻi me kahi hoʻololi genetic kikoʻī i kapa ʻia ʻo F508del . ʻO ke ʻano kēia, ma kahi o ke kāohi ʻana i nā hōʻailona, kōkua ia i ka hōʻemi ʻana i ka hopena o ke kīnā genetic ma lalo e hoʻoulu ai i ka maʻi. He mea hōʻoluʻolu nui kēia no kēia mau poʻe maʻi.
Nā mea e pono ai ʻoe e haʻi i kāu kauka ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau
He mea nui loa i kāu kauka ke ʻike i kou mōʻaukala olakino piha ma mua o ke kau ʻana i kēia lāʻau lapaʻau. ʻAʻole kūpono kēia lāʻau lapaʻau no nā mea āpau. E hōʻoia e haʻi i kāu kauka, ʻoiai inā loaʻa iā ʻoe kekahi o kēia mau kūlana:
- Inā he maʻi puʻupaʻa kou .
- Inā loaʻa iā ʻoe kekahi maʻi akepaʻa (he mea nui loa kēia).
- Inā he mau maʻi ʻaleka kou i Elexacaftor, Tezacaftor, Ivacaftor, a i ʻole kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, a i ʻole kala i loko o kēia lāʻau.
- Inā hāpai ʻoe a i ʻole e hoʻolālā ana e loaʻa kahi pēpē i ka wā e hiki mai ana.
- Inā he makuahine hānai waiū ʻoe.
Ma muli o kēia ʻike, e hoʻoholo kāu kauka inā kūpono kēia lāʻau lapaʻau iā ʻoe a i ʻole pono e hoʻololi i ka dosage.
Pehea pololei kaʻu e hoʻohana ai i kēia lāʻau lapaʻau?
I mea e loaʻa ai ka hopena maikaʻi loa mai kēia lāʻau lapaʻau, he mea nui e lawe iā ia e like me ke kuhikuhi ʻana.
ʻO ka mea nui loa, ʻo ia ka lawe mau ʻana i kēia lāʻau lapaʻau me kahi ʻai i loaʻa ka ʻaila a momona paha , no ka mea, ʻoi aku ka maikaʻi o ka hoʻopili ʻana o nā lāʻau lapaʻau i loko o kēia lāʻau lapaʻau e ke kino ke hui pū ʻia me ka momona.
Eia kekahi laʻana, hiki iā ʻoe ke lawe i kēia lāʻau lapaʻau:
- Me nā hua manu
- Me ka pata pīnati
- Me kahi kīʻaha me ka tīhi (e.g. pizza tīhi)
- Me ka ʻāpala
- Me ka yogurt (yogurt momona piha)
Nā mea ʻē aʻe e hoʻomanaʻo ai:
- E ale holoʻokoʻa i nā pila . Mai uhaʻi a kuʻi paha iā lākou, a nau paha e like me ka gum nau.
- E ho'āʻo e lawe i kāu lāʻau lapaʻau i ka manawa like i kēlā me kēia lā. Ke hoʻolilo ʻoe i kēia i mea maʻamau, ʻaʻole ʻoe e poina.
- Mai lawe i kēia lāʻau lapaʻau me nā hua waina a i ʻole ka wai pomelo. Hiki i nā mea hoʻohui i loko o ka wai pomelo ke hoʻopilikia nui i ke ʻano o ka hana ʻana o kēia lāʻau.
- Mai ho'ōki i ka lawe ʻana i kāu lāʻau a hiki i ka wā e ʻōlelo aku ai kāu kauka.
- I kekahi manawa, kuhikuhi ʻia kēia lāʻau lapaʻau i nā keiki ma luna o 6 mau makahiki, akā ma lalo o ka mākaʻikaʻi kūikawā a ke kauka wale nō.
He aha inā lawe koke wau i ka nui o ka lāʻau lapaʻau?
Inā manaʻo ʻoe ua lawe nui ʻoe i kēia lāʻau lapaʻau, mai hopohopo. E kelepona koke i ke Kikowaena ʻIke Lāʻau Lapaʻau Lahui ma ka Halemai Lahui ʻo Colombo . A i ʻole e hele i ka Emergency Treatment Unit (ETU) o ka haukapila kokoke loa. ʻOi aku ka maikaʻi inā hiki iā ʻoe ke lawe pū me ʻoe i ka ʻeke lāʻau lapaʻau i kou hele ʻana.
Nā mea ʻaʻole e hoʻohana pū me kēia lāʻau lapaʻau
He lāʻau ikaika ʻo Trikafta e hiki ke launa pū me nā lāʻau lapaʻau ʻē aʻe. No laila, pono ʻoe e haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau āpau āu e lawe nei, ʻaʻole wale nā mea i kuhikuhi ʻia e kāu kauka, akā, ʻo nā lāʻau lapaʻau ma luna o ke kauka, nā huaora, a me nā huahana lāʻau.
| Nā lāʻau lapaʻau a me nā meaʻai e hiki ke launa pū me Trikafta | |
|---|---|
| E pale i ka lawe ʻana iā Trikafta me kēia mau mea | |
| ʻO kekahi mau lāʻau lapaʻau no ka maʻi epilepsy | ʻO Carbamazepine, Phenobarbital, Phenytoin |
| Nā lāʻau lapaʻau | Rifampin, Rifabutin |
| Nā huahana lāʻau lapaʻau | ʻO ka Wort o St. John |
| Meaʻai | ʻO ka hua waina a me ka wai hua waina |
| E nīnau i kāu kauka inā ʻoe e lawe pū ana me Trikafta. | |
| Nā lāʻau antibiotic ʻē aʻe | ʻO Clarithromycin, ʻErythromycin |
| Nā lāʻau antifungal | ʻO Fluconazole, Itraconazole, Ketoconazole |
| Nā lāʻau hoʻopau i ka pale ʻana | ʻO Cyclosporine, Sirolimus, Tacrolimus |
| ʻĒ aʻe | ʻO Digoxin, Warfarin, kekahi mau lāʻau lapaʻau no ka maʻi diabetes (e like me Glimepiride, Glipizide) |
He aha nā hopena ʻaoʻao e hiki ke loaʻa mai ka lawe ʻana i ka lāʻau lapaʻau?
E like me nā lāʻau lapaʻau āpau, hiki iā Trikafta ke hana i kekahi mau hopena ʻaoʻao. Hiki i kekahi o kēia mau mea ke koʻikoʻi. No laila he mea nui loa ka makaʻala i kēia.
| Ka hopena ʻaoʻao | Ka wehewehe a me nā mea e hana ai |
|---|---|
| Nā hopena ʻaoʻao koʻikoʻi e pono e hōʻike koke ʻia i kāu kauka | |
| Nā hōʻailona o ka hōʻino ʻana o ke akepaʻa | Mimi melemele ʻeleʻele a ʻeleʻele paha, melemele o nā maka a i ʻole ka ʻili, ʻeha ma ka ʻaoʻao ʻākau o luna o ka ʻōpū, nalowale o ka makemake e ʻai, nausea, luhi ʻē. Inā ʻike ʻoe i kēia mau mea, e haʻi koke i kāu kauka . |
| Nā hopena alerika koʻikoʻi | ʻŌhūhū ʻili, maneʻo, pehu o ka maka, lehelehe a i ʻole ke alelo, paʻakikī ke hanu. He pilikia kēia. |
| Nā loli i ka ʻike maka | E hōʻike i nā loli i kāu kauka , e like me ke ao ʻana o nā keʻokeʻo o kou mau maka (cataracts) a i ʻole ka ʻike maka pōwehiwehi. |
| Ke kō koko haʻahaʻa (Hypoglycemia) | Hoʻomaha ʻole, huikau, poniuniu, pōloli nui, hou nui, haʻalulu, a me ka puʻuwai wikiwiki. |
| Nā hopena ʻaoʻao ʻaʻole i koʻikoʻi pinepine, akā pono e hōʻike ʻia i ke kauka inā hoʻomau lākou | |
| Nā pilikia o ka ʻōnaehana hoʻoheheʻe | ʻEha ʻōpū, maʻi pākī, kinoea. |
| Nā hōʻailona maʻamau | ʻEha poʻo, poniuniu, kuni, ʻūpā sinus. |
| ʻOi loa aku no nā wahine | ʻEha i ka wā o ka menstruation. |
Inā loaʻa iā ʻoe kekahi mau hōʻailona ʻē aʻe ʻaʻole ma kēia papa inoa, e haʻi i kāu kauka e pili ana iā lākou.
Leka Lawe-Home
- He lāʻau lapaʻau koʻikoʻi ʻo Trikafta no ka Cystic Fibrosis e hoʻopilikia ana i ke kumu o ka maʻi.
- Pono e lawe ʻia kēia lāʻau lapaʻau me kahi ʻai i loaʻa ka ʻaila a momona paha . Mai lawe iā ia ma ka ʻōpū ʻole.
- Mai lawe pū i kēia lāʻau me ka wai pomelo. Eia kekahi, e haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau ʻē aʻe āu e lawe nei.
- E ʻimi koke i ke kōkua lapaʻau inā loaʻa iā ʻoe nā hōʻailona o ka hōʻino ʻia o ke akepaʻa (melemele o nā maka, mimi ʻeleʻele) a i ʻole kahi hopena maʻi ʻaleka koʻikoʻi.
- E hālāwai me ke kauka i ka lā i hoʻonohonoho ʻia a mai poina i nā hoʻāʻo koko a me nā maka āna i kuhikuhi ai.
- Nou wale nō kēia lāʻau lapaʻau. Mai kaʻana like me nā poʻe ʻē aʻe.
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