Loaʻa iā ʻoe a i ʻole kekahi o kou ʻohana ka cystic fibrosis? Inā pēlā, ua kuhikuhi paha kāu kauka iā ʻoe i kahi pila e hoʻohui i ʻelua mau lāʻau i kapa ʻia ʻo Tezacaftor lāua ʻo Ivacaftor. Hiki iā ʻoe ke loaʻa i kēia ma lalo o ka inoa inoa ʻo Symdeko. He lāʻau lapaʻau kūikawā kēia. No laila i kēia lā, e kamaʻilio kākou ma ke ʻano maʻalahi a aloha e pili ana i ka hana maoli a kēia lāʻau, pehea e hoʻohana pono ai, 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 ka cystic fibrosis kahi maʻi i hoʻokumu ʻia e kahi kīnā genetic e kāohi ana i ke kaulike o ka paʻakai a me ka wai i loko o ko kākou kino. ʻO ka hopena, ʻo nā mea huna, ʻoi aku hoʻi i loko o nā māmā a me ka ʻōnaehana hoʻoheheʻe, e like me ka mucus, e lilo i mānoanoa loa a pipili. ʻO ka ʻoiaʻiʻo, ua like ia me ke kāpili. ʻO kēia mucus mānoanoa e paʻakikī ai ka hanu ʻana i loko o nā māmā, a hiki ke alakaʻi i nā maʻi pinepine .
E noʻonoʻo e like me nā puka liʻiliʻi i loko o nā pūnaewele o ko kākou kino, kahi e komo ai ka paʻakai a me ka wai i loko a i waho o nā pūnaewele. I ka cystic fibrosis, ʻaʻole hana pono kēia mau puka.
ʻO kēia kahi e komo mai ai kēia mau lāʻau ʻelua, ʻo Tezacaftor lāua ʻo Ivacaftor. ʻO ka hana a kēia mau lāʻau, ʻo ia ke hele i kēlā mau puka hana hewa (nā protein) a kōkua iā lākou e hana pono . Ke hoʻihoʻi ʻia ka neʻe ʻana o ka paʻakai a me ka wai ma kēia ʻano, e hoʻoheheʻe mālie ʻia ka mucus mānoanoa a lawe maʻalahi ʻia mai nā māmā. A laila e maʻalahi ka hanu ʻana, a ua kāohi nui ʻia nā hōʻailona.
Nā mea e pono ai ʻoe e haʻi i kāu kauka ma mua o ka lawe ʻana i ka lāʻau lapaʻau
Ma mua o kou hoʻomaka ʻana e lawe i kēia lāʻau lapaʻau, he mea nui loa ia e haʻi i kāu kauka e pili ana i kou kūlana olakino holoʻokoʻa. No ka mea, aia kekahi mau kūlana e pono ai ka mālama kūikawā i ka wā e hoʻohana ai i kēia lāʻau lapaʻau. E hōʻoia e haʻi iā lākou e pili ana i kēia mau mea.
- Inā he maʻi puʻupaʻa kou .
- Inā loaʻa iā ʻoe kekahi maʻi akepaʻa . He mea nui loa kēia, no ka mea, ua hoʻopau ʻia kēia lāʻau lapaʻau mai ke kino ma o ke akepaʻa .
- Inā he maʻi ʻaleka kou iā Tezacaftor, Ivacaftor, a i ʻole kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, a mea hoʻoluʻu paha .
- Inā hāpai ʻoe a i ʻole e hoʻāʻo nei e hāpaiNā inoa.
- Inā he makuahine hānai waiū ʻoe.
Ma muli o kēia ʻike, e hoʻoholo ke kauka inā kūpono kēia lāʻau lapaʻau iā ʻoe a i ʻole, a inā paha e pono e hoʻololi i ka nui.
Pono e hoʻohana ʻia ka lāʻau lapaʻau ma ke ʻano kūpono.
I mea e loaʻa ai ka hopena maikaʻi loa mai kēia lāʻau lapaʻau, he mea nui loa ia e lawe pono.
- E lawe pū me ka meaʻai: Pono e lawe ʻia kēia pila me ka ʻai momona . No ka laʻana, nā hua manu, ka pata pīnati , ka tīhi, ka waiū, ka yogurt, a i ʻole kahi ʻai me kahi ʻaila niu liʻiliʻi. ʻO kēia ke ala maikaʻi loa e omo ai i ka lāʻau lapaʻau.
- E lawe i ka manawa like: E ho'āʻo e lawe i kāu lāʻau lapaʻau i ka manawa like i kēlā me kēia lā e like me ka hiki. E waiho ma kahi o 12 mau hola ma waena o nā lāʻau kakahiaka a me ke ahiahi.
- E ale i ka papa holoʻokoʻa: Mai wāwahi, kuʻi, a nau paha i ka papa. E ale i ka papa holoʻokoʻa me kahi aniani wai . No ka mea, ua hoʻolālā ʻia kēia mau papa e hoʻoheheʻe mālie i loko o ke kino, ʻo ka wāwahi ʻana iā lākou hiki ke hoʻololi i ke ʻano o ka hana ʻana o ka lāʻau.
- Wai ʻAila: ʻO kekahi mea nui loa , ʻaʻole loa e lawe i kēia lāʻau lapaʻau me ka wai ʻaila. Hiki iā ia ke hoʻopilikia nui i ka pono o ka lāʻau lapaʻau. Eia kekahi, e ho'ōki i ka ʻai ʻana i ka ʻaila.
- Mai ho'ōki: Mai ho'ōki i ka lawe ʻana i kāu lāʻau lapaʻau a hiki i ka wā e ʻōlelo aku ai kāu kauka iā ʻoe. E hoʻomau i ka lawe ʻana iā ia ʻoiai inā ua maikaʻi kou manaʻo.
He aha inā lawe wau i ka nui o ka lāʻau lapaʻau?
E noʻonoʻo ua lawe hewa ʻoe i nā pila he nui loa. Inā hana ʻia kēia , e hele koke i ka Halemai Pilikia (ETU) kokoke loa. A i ʻole e kelepona i ke Kikowaena ʻIke ʻAi ʻona Lahui ma ka Halemai Lahui ʻo Colombo no ka ʻōlelo aʻoaʻo.
He aha kāu e hana ai inā e poina ʻoe i kahi mahele o ka lāʻau lapaʻau?
E noʻonoʻo ua poina iā ʻoe ke lawe i kāu lāʻau lapaʻau i ka hola 8 am. Inā hoʻomanaʻo ʻoe ma kahi o ka hola 12 awakea, ʻo ia hoʻi, ua ʻoi aku ma mua o 6 mau hola a hiki i kāu mahele lāʻau aʻe, e lawe i ka mahele lāʻau i poina i ka wā e hoʻomanaʻo ai ʻoe. Akā inā emi ma lalo o 6 mau hola a hiki i kāu mahele lāʻau aʻe, e kāpae i ka mahele lāʻau i poina a lawe i ka mahele lāʻau aʻe i ka manawa i hoʻonohonoho ʻia. Mai lawe i ʻelua mau mahele lāʻau i ka manawa hoʻokahi.
Nā lāʻau lapaʻau ʻē aʻe e launa pū me kēia lāʻau lapaʻau
Hiki i kēia lāʻau lapaʻau ke launa pū me kekahi mau lāʻau lapaʻau ʻē aʻe. No laila, he mea nui e haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau āpau āu e lawe nei (me nā huaora, nā lāʻau lapaʻau lāʻau, a me nā mea hoʻohui).
| ʻAno lāʻau lapaʻau | Nā Laʻana |
|---|---|
| E pale i ka lawe ʻana i kēia lāʻau me kēia mau mea āpau | |
| ʻO kekahi mau lāʻau hopu | ʻO Carbamazepine, Phenobarbital, Phenytoin |
| Kekahi mau lāʻau lapaʻau maʻi puʻupuʻu | Rifampin, Rifabutin |
| Mea hoʻohui lāʻau lapaʻau | ʻO ka Wort o St. John |
| He mea inu | Wai ʻāpala |
| E hoʻomaopopo i kāu kauka no ka mea e hiki ke launa pū me kēia mau mea. | |
| Kekahi mau lāʻau antibiotic | ʻO Clarithromycin, ʻErythromycin |
| Nā lāʻau antifungal | ʻO Fluconazole, Itraconazole, Ketoconazole |
| Nā lāʻau pale kino | ʻO Cyclosporine, Sirolimus, Tacrolimus |
| He lāʻau lapaʻau no ka maʻi puʻuwai | ʻO Digoxin |
ʻAʻole i piha kēia papa inoa, no laila e haʻi i kāu kauka e pili ana i nā mea āpau āu e hoʻohana ai.
Nā mea e makaʻala ai i ka wā e lawe ai i ka lāʻau lapaʻau
E nānā mau ana kāu kauka iā ʻoe i kou wā e lawe ana i kēia lāʻau.
- Nā nānā maʻamau: E haʻi aku kāu kauka iā ʻoe e hele mai i ke keʻena lapaʻau i nā lā i hoʻonohonoho ʻia. Mai hōʻalo i kēia mau mea. He mea nui kēia e ʻike inā e hoʻomaikaʻi ana kāu mau hōʻailona a i ʻole.
- Nā hoʻāʻo koko: E kauoha paha kāu kauka i kekahi mau hoʻāʻo koko i kou wā e lawe ana i kēia lāʻau. E nānā lākou i kou mau enzymes ake, ʻoiai kou mau enzymes ake. He mea maʻamau kēia, no laila mai hopohopo. ʻO ia ke hōʻoia e hana ana ka lāʻau lapaʻau iā ʻoe a ʻaʻole ia e hoʻopilikia i kou ake.
- Hoʻokolokolo maka: Hiki ke noi ʻia ʻoe e hana i kahi hoʻokolokolo maka ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau a i ka wā e lawe ana. Inā ʻike ʻoe i kekahi mau loli i kou ʻike (e like me ka ʻike pōwehiwehi, ka ʻike ʻana i nā apo a puni nā kukui) , e haʻi koke i kāu kauka.
He aha nā hopena ʻaoʻao e hiki mai ana?
E like me nā lāʻau lapaʻau āpau, hiki i kēia ke hana i kekahi mau hopena ʻaoʻao. ʻAʻole loaʻa i nā kānaka a pau. Akā he mea nui e makaʻala iā lākou.
| ʻAno o ka hopena ʻaoʻao | Nā hōʻailona |
|---|---|
| Nā hopena ʻaoʻao koʻikoʻi e pono e hōʻike koke ʻia i kāu kauka | |
| Nā hopena alerika | ʻŌhūhū ʻili, maneʻo, pehu o ka maka, lehelehe, alelo a i ʻole ka puʻu, paʻakikī ke hanu. |
| Nā hōʻailona o ka hōʻeha o ke akepaʻa | ʻEha ma ka ʻōpū ʻākau o luna, nalowale ka makemake e ʻai, nausea, nā ʻōpala māmā, ka mimi melemele ʻeleʻele a ʻeleʻele paha, ka melemele o nā maka a i ʻole ka ʻili, a me ka manaʻo luhi ʻē. |
| Nā loli i ka ʻike | ʻIke pōwehiwehi, ʻike ʻana i nā apo a puni nā kukui, nalowale ka ʻike. |
| Nā hopena ʻaoʻao ʻaʻole i koʻikoʻi pinepine, akā pono e hōʻike ʻia i ke kauka inā hoʻomau lākou | |
| ʻEha poʻo | ʻEha poʻo laulā. |
| Pōʻino | Pōʻaiʻī . |
| Ka luaʻi | Manaʻo e like me ʻoe e luaʻi ana (Nausea). |
| ʻEha sinus | Ke ʻano o ka ʻeha a i ʻole ka paʻa a puni ka maka a i ʻole ka lae. |
Inā loaʻa iā ʻoe kekahi mau hōʻailona ʻē aʻe i ʻōlelo ʻole ʻia ma kēia papa inoa, e ʻoluʻolu e hoʻomaopopo i kāu kauka e pili ana iā lākou.
Pehea e mālama pono ai i ka lāʻau lapaʻau?
- E mālama ʻia mai nā keiki: E mālama mau i nā lāʻau lapaʻau mai ka hiki ʻana aku o nā keiki a me nā holoholona, ma kahi paʻa.
- Mahana kūpono: E mālama ma ka mahana o ka lumi (ma waena o 20 a me 25 kekelē Celsius). E pale mai ka wela nui a me ka makū.
- Nā Lāʻau Lapaʻau Pau: Mai hoʻohana i nā lāʻau lapaʻau i hala ko lākou lā palena pau. E hoʻolei pono iā lākou.
- Ka Hoʻolei ʻana: Mai hoʻolei i nā lāʻau lapaʻau i hoʻohana ʻole ʻia i loko o ka lua a i ʻole i loko o ka ʻōpala. E nīnau i kāu kauka e pili ana i ke ala kūpono e hoʻolei aku ai iā lākou.
Leka Lawe-Home
- Tezacaftor; E lawe mau i ka lāʻau lapaʻau i kapa ʻia ʻo Ivacaftor me kahi ʻai momona. Kōkua kēia i ka lāʻau lapaʻau e komo maikaʻi ʻia e ke kino.
- E hōʻalo i ka inu ʻana i ka wai huaʻai a i ʻole ka wai huaʻai i ka wā e lawe ana i kēia lāʻau.
- E hōʻoia e hoʻomaopopo i kāu kauka e pili ana i nā lāʻau lapaʻau ʻē aʻe, nā huaora, a me nā lāʻau lapaʻau kuʻuna āu e lawe nei.
- Inā ʻoe e poina i kahi lāʻau lapaʻau, e lawe i ka lāʻau lapaʻau i poina inā ʻoi aku ia ma mua o 6 mau hola a hiki i kāu lāʻau lapaʻau aʻe. A i ʻole, e hōʻalo iā ia. Mai lawe i ʻelua mau lāʻau lapaʻau i ka manawa like.
- Inā loaʻa iā ʻoe kahi hopena koʻikoʻi, e like me nā loli o ka ʻike, ka melemele ʻana o ka ʻili a i ʻole nā maka, e kelepona koke aku i kāu kauka.
- No ka ʻike laulā wale nō kēia ʻatikala. E hahai mau i ka ʻōlelo aʻo a kāu kauka.
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