Inā ʻoe a i ʻole kahi mea aloha i loaʻa iā ʻoe ka Cystic Fibrosis (CF), ua ʻike maopopo paha ʻoe i nā pilikia o ke ola ʻana me ia. Akā ʻo ka nūhou maikaʻi, me ka holomua o ka ʻepekema lapaʻau, aia nā lāʻau lapaʻau hou e hiki ke kōkua iā ʻoe e hoʻoponopono i kēia kūlana. I kēia lā, e kamaʻilio mākou e pili ana i kekahi o ia ʻano lāʻau. ʻO Ivacaftor kona inoa. Ua ʻike paha ʻoe iā ia ma ka inoa inoa ʻo Kalydeco. E nānā koke kākou i kēia lāʻau.
He aha ka mea e hana maoli me kēia lāʻau lapaʻau?
I ka ʻōlelo maʻalahi, he lāʻau lapaʻau ʻo Ivacaftor i hoʻohana ʻia e mālama i ka Cystic Fibrosis (CF) . Eia naʻe, ʻaʻole kūpono ia no nā poʻe maʻi CF āpau. Hana wale kēia lāʻau lapaʻau i nā poʻe me nā mutations kikoʻī i loko o nā genes e hoʻoulu ai i ka CF. E hana kāu kauka i nā hoʻokolohua e pono ai e hoʻoholo inā kūpono kēia lāʻau lapaʻau iā ʻoe.
He maʻi hoʻoilina ka Cystic Fibrosis e hoʻopilikia ai i ka hana o kahi protein i loko o ko kākou kino. Hoʻoulu kēia i ka hōʻiliʻili ʻana o nā mea huna mānoanoa a pipili i loko o nā ʻōpū e like me nā māmā a me ka pancreas, e hana ana i nā pilikia like ʻole. Hana ka lāʻau lapaʻau ʻo Ivacaftor ma ka hoʻihoʻi ʻana i ka hana o ka protein i hoʻopilikia ʻia i kekahi ʻano, e hoʻomāmā ana i nā mea huna a hiki ke wehe maʻalahi ʻia mai ke kino.
Nā mea e pono ai ʻoe e haʻi i kāu kauka ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau
Ma mua o ka hoʻohana ʻana i kēia lāʻau lapaʻau, he mea nui loa ia e hāʻawi i kāu kauka i kahi kiʻi maopopo o kou olakino holoʻokoʻa. E hōʻoia e haʻi iā lākou e pili ana i kēia mau mea:
- Maʻi akepaʻa: He mea nui e haʻi i kāu kauka inā loaʻa iā ʻoe kekahi maʻi akepaʻa. ʻO kēia no ka mea ua hoʻololi nui ʻia kēia lāʻau lapaʻau e ke akepaʻa. Inā loaʻa iā ʻoe nā pilikia akepaʻa, pono paha kāu kauka e hoʻoponopono i kāu mahele lāʻau.
- Maʻi puʻupaʻa: Pēlā nō, inā he mau pilikia puʻupaʻa kou, e haʻi mai iā mākou e pili ana i kēlā.
- Nā maʻi ʻaleka: E haʻi i kāu kauka inā he maʻi ʻaleka kou iā Ivacaftor a i ʻole kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, a mea hoʻoluʻu paha.
- Hāpai a hoʻolālā paha e loaʻa kahi pēpē: Inā hāpai ʻoe a i ʻole e hoʻāʻo nei e hāpai, e haʻi i kāu kauka.
- Inā he makuahine hānai waiū ʻoe: E hōʻoia e haʻi i kēia inā ʻoe e hānai waiū ana.
No kou palekana ponoʻī ke haʻi aku i ke kauka me ka hūnā ʻole i kēia ʻike. No laila, mai poina e haʻi aku iā ia ʻoiai inā he mea liʻiliʻi ia.
Pehea pololei kaʻu e hoʻohana ai i kēia lāʻau lapaʻau?
No ka loaʻa ʻana o ka hopena maikaʻi loa mai ka lāʻau lapaʻau, he mea nui loa ia e hoʻohana pono.
Pehea e lawe ai i ka lāʻau lapaʻau
ʻO kēia lāʻau lapaʻauPono e lawe pū ʻia me kahi ʻai momona. No ka laʻana, inā ʻoe e lawe i kēia pila me kahi mea e like me ka hua manu, ka tīhi toast, kahi ʻāpana berena me ka pata pīnati, a i ʻole ka omelet i hana ʻia me ka pata, e omo maikaʻi ʻia ka lāʻau e ke kino. Mai lawe i ka ʻōpū ʻole.
ʻO ka mea nui loa: Mai lawe i kēia lāʻau lapaʻau me ka wai pomelo no kekahi kumu. ʻAʻole maikaʻi hoʻi nā ʻalani Seville. Hiki i kēia ke hoʻopilikia i ka pono o ka lāʻau lapaʻau.
E lawe wale i ka nui i kuhikuhi ʻia, ke kuhikuhi ʻia e kāu kauka. E pale i ka lawe ʻana i nā mea hou aku. Mai hoʻōki koke i ka lawe ʻana i ka lāʻau me ka ʻole o ke aʻo ʻana a kāu kauka.
Inā ʻoe e hāʻawi iā ia i nā keiki
I kekahi manawa, ua kuhikuhi ʻia kēia lāʻau lapaʻau no nā keiki ma luna o 6 mau makahiki. Eia nō naʻe, e kamaʻilio pono me kāu kauka pediatric e pili ana i ia mea a e hahai i kāna mau kuhikuhi.
Inā hoʻonui ʻia ka nui o ka lāʻau lapaʻau (Overdose)
Inā manaʻo ʻoe ua lawe nui ʻoe i ka lāʻau lapaʻau, e hele koke i ka Emergency Treatment Unit (ETU) kokoke loa. A i ʻole e kelepona i ke National Poisons Information Centre ma ka Halemai Lahui ʻo Colombo no ka ʻōlelo aʻoaʻo.
Inā ʻoe e poina i kahi mahele o ka lāʻau lapaʻau
Inā ʻoe e poina i kahi lāʻau lapaʻau, e lawe koke iā ia i kou hoʻomanaʻo ʻana. Eia nō naʻe, inā ʻoi aku ka liʻiliʻi ma mua o 6 mau hola a hiki i kāu lāʻau lapaʻau aʻe, e kāpae i ka lāʻau lapaʻau i poina a lawe i kāu lāʻau lapaʻau aʻe i ka manawa i hoʻonohonoho ʻia. Mai lawe pālua i ka lāʻau lapaʻau.
Nā lāʻau lapaʻau ʻē aʻe e launa pū me Ivacaftor
He mea nui loa ia e haʻi aku i kāu kauka e pili ana i nā lāʻau lapaʻau āpau āu e lawe nei, me nā huaora a me nā huahana lāʻau. Hiki i kekahi mau lāʻau lapaʻau ke launa pū me Ivacaftor. E nānā i kēia papa.
| ʻAno lāʻau lapaʻau/mea hana | Ka pae o ka hopohopo |
|---|---|
| ʻO kekahi mau lāʻau lapaʻau i hoʻohana ʻia no ka hopu ʻana (e like me carbamazepine, phenobarbital, phenytoin) | Hoʻemi i ka pono o Ivacaftor. |
| Wai huapalaoa a me nā ʻalani Seville | Hoʻonui pono ʻole i ka nui o ka lāʻau lapaʻau. |
| Rifampin, Rifabutin (nā lāʻau lapaʻau no ka maʻi puʻupuʻu) | Hoʻemi nui i ka pono o Ivacaftor. |
| ʻO St. John's Wort (huahana lāʻau lapaʻau) | Hoʻemi i ka pono o Ivacaftor. |
| Nā lāʻau antifungal (e.g. ketoconazole, itraconazole, fluconazole) | Hiki ke hoʻonui ʻia ka nui o ka Ivacaftor. |
| Kekahi mau lāʻau antibiotic (e.g. clarithromycin, erythromycin) | Hiki ke hoʻonui ʻia ka nui o ka Ivacaftor. |
| ʻO Cyclosporine, Tacrolimus, Digoxin | Hiki paha i ka Ivacaftor ke hoʻopilikia i ka pono o kēia mau lāʻau lapaʻau. |
ʻAʻole i piha kēia papa inoa, no laila ʻoi aku ka maikaʻi o ka haʻi ʻana i kāu kauka e pili ana i nā mea āpau āu e lawe ai.
Nā hopena ʻaoʻao paha o ka lawe ʻana i ka lāʻau lapaʻau
E like me nā lāʻau lapaʻau āpau, hiki iā Ivacaftor ke hana i nā hopena ʻaoʻao i kekahi poʻe. He koʻikoʻi kekahi o kēia mau mea, a he akahai kekahi.
| Inā ʻike ʻoe i kēia mau hōʻailona, e haʻi koke aku i kāu kauka. | |
|---|---|
| Nā hōʻailona alerika | ʻŌhūhū ʻili, maneʻo, pehu o ka maka, nā lehelehe a i ʻole ke alelo. |
| Nā hopena ma ke akepaʻa | Mimi ʻeleʻele, ʻōpala māmā, 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. |
| Nā loli o ka ʻike | ʻIke pōwehiwehi a i ʻole nā loli ʻē aʻe. |
| ʻĒ aʻe | Manaʻo luhi loa, manaʻo e like me ke kuni. |
| ʻAʻole maʻamau kēia mau mea koʻikoʻi, akā inā hoʻomau lākou, e haʻi i kāu kauka. | |
| ʻŌnaehana hoʻoheheʻe | ʻAʻai ʻole, nausea, diarrhea. |
| ʻĒ aʻe | ʻEha poʻo , poniuniu , ʻeha hui. |
ʻOiai e lawe ana i kēia lāʻau lapaʻau, pono paha i kāu kauka ke nānā i kou ʻike maka a me nā pae o nā enzymes akepaʻa i loko o kou koko i nā manawa a pau. He mea maʻamau kēia.
Pehea e mālama pono ai i ka lāʻau lapaʻau?
- E mālama ʻia mai nā keiki aku.
- E mālama ma ka mahana o ka lumi (ma waena o 15-30 kekelē Celsius).
- E hoʻolei i ka lāʻau lapaʻau i pau me ka hoʻohana ʻole ʻana.
Ua kuhikuhi ʻia kēia lāʻau lapaʻau nou wale nō. Mai kaʻana like me kekahi no kekahi kumu.
Leka Lawe-Home
- He lāʻau lapaʻau kūikawā ʻo Ivacaftor i hāʻawi ʻia e mālama i kekahi mau ʻano cystic fibrosis.
- Pono e lawe mau ʻia kēia lāʻau me ka ʻai momona.E lawe. Mai lawe pū me ka wai hua waina.
- E haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau ʻē aʻe āu e lawe ai a me kou mau maʻi ʻē aʻe a pau.
- Inā loaʻa iā ʻoe kekahi mau hopena koʻikoʻi, e like me ka melemele o nā maka, ka mimi ʻeleʻele, a i ʻole nā ʻulaʻula o ka ʻili, e haʻi koke aku i kāu kauka.
- Nou wale nō kēia lāʻau lapaʻau. Mai hāʻawi aku i kekahi. Inā he mau nīnau kāu, e kamaʻilio mau me kāu kauka.
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