Hele huakaʻi me Hemophilia A: He aha e ʻike ma mua o kou hele

Anter

• E hōʻoia inā he ʻinikua huakaʻi kāu
• Lawe mai i nā mea lawa
• Paka i kāu lāʻau
• Mai poina i kāu huakaʻi huakaʻi
• E nānā ma mua o ka lele ʻana
• E kiʻi i waho
• Mai makaʻu e noi i ke kōkua
• Lawe i kahi mea leka hoʻomaopopo
• E mālama i nā infusions
• A ʻoiaʻiʻo, e leʻaleʻa!

ʻO Ryanne koʻu inoa, a ua ʻike ʻia me ka hemophilia A i ka piha ʻana o ʻehiku mahina. Ua huakaʻi nui au ma waena o Kanada, a i kahi mea liʻiliʻi, ʻo ʻAmelika Hui Pū ʻIa. Eia kekahi o kaʻu mau ʻōlelo aʻoaʻo no ka huakaʻi ʻana me hemophilia A.

E hōʻoia inā he ʻinikua huakaʻi kāu

Kaukaʻi ʻia i kou wahi i hele ai, he mea nui ka loaʻa ʻana o ka ʻinikua huakaʻi e uhi ana i nā kūlana preexisting. Loaʻa i kekahi poʻe ka ʻinikua ma o kā lākou kula a i ʻole ka haku hana; i kekahi manawa hāʻawi ka palapala ʻaiʻē i ka ʻinikua huakaʻi. ʻO ka mea nui e hōʻoia e uhi lākou i nā kūlana preexisting, e like me hemophilia A. ʻO kahi huakaʻi i kahi haukapila i kahi ʻāina ʻē me ka ʻole o ka ʻinikua hiki ke uku.

Lawe mai i nā mea lawa

E ʻike pono e lawe pū me ʻoe i kāu mea no kāu huakaʻi. ʻO kēlā me kēia ʻano o nā mea āu e lawe ai, he mea nui ia iā ʻoe ka mea āu e makemake ai ʻoiai ʻoe e haʻalele (a me kekahi keu inā wale nō o ka ulia pōpilikia). ʻO kēia hoʻi ka ʻūlū ʻana i nā nila nui, nā bandages, a me nā swab alkohol. ʻIke mākou āpau i nalowale i kekahi manawa, no laila maikaʻi ke hāpai i kēia mea me ʻoe i kāu halihali. ʻAʻole uku ka hapa nui o nā mokulele i kahi uku keu no kahi ʻeke halihali.

Paka i kāu lāʻau

E hōʻoia i ka ʻūlū ʻana i nā lāʻau lapaʻau e pono ai i loko o kā lākou ʻōmole kuhikuhi mua (a i loko o kāu ʻeke lawe.). E ʻāpono e ʻūlū lawa no kāu huakaʻi holoʻokoʻa. Hoʻomaʻamaʻa wau me kaʻu kāne e pono ʻoe i kāu passport wale nō a me kāu lāʻau e hele ai; hiki iā ʻoe ke pani i kekahi mea ʻē aʻe inā pono!

Mai poina i kāu huakaʻi huakaʻi

Ke hele huakaʻi, maikaʻi mau ka lawe ʻana i kahi leka huakaʻi i kākau ʻia e kāu kauka. Hiki i ka leka ke hoʻohui i ka ʻike e pili ana i ka noʻonoʻo e lawe nei ʻoe, nā lāʻau lapaʻau āu e pono ai, a me kahi papa hana inā pono ʻoe e hele i ka haukapila.

E nānā ma mua o ka lele ʻana

ʻO kahi rula maikaʻi o ka manamana nui e nānā inā kahi i kahi āu e hele ai i kahi kikowaena o ka hemophilia ma ia wahi. Inā pēlā, hiki iā ʻoe ke hoʻokaʻaʻike i ka haukapila a hāʻawi iā lākou i nā poʻo e hoʻolālā ana ʻoe i kahi huakaʻi i ko lākou kūlanakauhale (a i ʻole ke kūlanakauhale kokoke). Hiki iā ʻoe ke loaʻa i kahi papa inoa o nā kikowaena mālama hemophilia ma ka pūnaewele.

E kiʻi i waho

ʻO ke kaiāulu hemophilia, i koʻu ʻike, makemake e pili loa a kōkua. ʻO ka maʻamau, aia nā pūʻulu aʻoaʻo i nā kūlanakauhale nui i hiki iā ʻoe ke kikoo aku a hoʻopili aku me kāu huakaʻi. Hiki iā lākou ke kōkua iā ʻoe e hoʻokele i kāu wahi hou. Hōʻike paha lākou i kekahi mau wahi kūloko!

Mai makaʻu e noi i ke kōkua

Inā ʻoe e hele hoʻokahi a i ʻole me kahi mea aloha, mai makaʻu e noi i ke kōkua. Ke noi nei i ke kōkua me nā ukana kaumaha hiki i ka ʻokoʻa ma waena o ka leʻaleʻa i kou wā hoʻomaha, a i ʻole ke hoʻolilo ʻana iā ia i kahi moe me ke kahe. Hāʻawi ka hapanui o nā mokulele i nā noho huila a me nā kōkua puka. Hiki iā ʻoe ke noi no ka lumi lumi hou a noi i kahi noho kūikawā inā ʻoe e kāhea i ka mokulele ma mua o ka manawa.

Lawe i kahi mea leka hoʻomaopopo

ʻO kēlā me kēia mea me ka maʻi hoʻomau e pono ke komo i kahi kūpeʻe lima a i ʻole ka lei i nā manawa āpau (he kihi pono kēia inā ʻaʻole ʻoe e huakaʻi). I loko o nā makahiki, he nui nā hui i puka mai me nā koho kaila e hoʻohālikelike i kou ʻano a me kou nohona.

E mālama i nā infusions

E mālama pono i kahi hoʻopaʻa maikaʻi o kāu infusions ʻoiai ʻoe e huakaʻi ana. Ma kēlā ala e ʻike ai ʻoe i ka nui o nā mea āu i lawe ai. Hiki iā ʻoe ke kūkākūkā i nā hopohopo me kāu hematologist ke hoʻi ʻoe i ka home.

A ʻoiaʻiʻo, e leʻaleʻa!

Inā hoʻomākaukau kūpono ʻoe, e leʻaleʻa a pīhoihoi ka huakaʻi (ʻoiai me kahi maʻi koko). E hoʻāʻo ʻaʻole e waiho i ke koʻikoʻi o ka mea ʻike ʻole ʻia e kāohi iā ʻoe mai ka leʻaleʻa i kāu huakaʻi.

Hana ʻo Ryanne ma ke ʻano he freelance mea kākau ma Calgary, Alberta, Kanada. He blog kāna i hoʻolaʻa ʻia no ka hāpai ʻana i ka ʻike no nā wahine me nā maʻi kōkō i kapa ʻia ʻo Hemophilia no nā Kaikamahine. He mea manawaleʻa nui hoʻi ia ma waena o ke kaiāulu hemophilia.