Ke manaʻo pinepine nei ʻoe i ka poniuniu me ke kumu ʻole? Ke manaʻo nei ʻoe i ka luhi loa? Ke ʻānai nui nei ʻoe, ʻoiai ma hope o ka ʻauʻau wela? Ke lohe nei ʻoe i ke kani ʻana i loko o kou mau pepeiao? Manaʻo pinepine mākou he mea maʻamau kēia mau mea a hoʻowahāwahā iā lākou. Akā i kekahi manawa, ma hope o kēia mau hōʻailona liʻiliʻi, aia paha kahi kūlana i lohe ʻole ʻia e mākou a pono mākou e hopohopo. I kēia lā e kamaʻilio mākou e pili ana i kekahi maʻi. ʻO ia ka Polycythemia Vera , a i ʻole PV no ka pōkole.
I ka ʻōlelo maʻalahi, he aha ka polycythemia vera (PV)?
I ka ʻōlelo maʻalahi, ʻo ka polycythemia vera (PV) kahi maʻi koko i loko o ko mākou kino. Hoʻoulu ia i ko mākou kino e hana i nā hunaola koko ʻulaʻula he nui loa . I kēia manawa ke noʻonoʻo nei paha ʻoe, "He maikaʻi nā hunaola koko ʻulaʻula no ke kino, no laila he aha ka mea e hana ai ke hana mākou i nā mea he nui loa?" ʻO ia ka pilikia.
E noʻonoʻo ʻoe aia kekahi alanui e hiki ke lawe i kahi helu o nā kaʻa. He aha ka mea e hana ʻia inā ʻoe e kau i hoʻokahi tausani manawa ʻoi aku ka nui o nā kaʻa ma kēlā alanui ma mua o ka hiki ke lawe? E ālai ʻia ke alanui holoʻokoʻa, a ʻaʻole hiki i nā kaʻa ke neʻe, ʻeā? ʻO ia ka mea e hana ʻia i loko o ko kākou mau kīʻaha koko. Ke nui loa nā hunaola koko ʻulaʻula, mānoanoa ko kākou koko . E like me ka mea e pono ai ke wai e mānoanoa e like me ka meli.
ʻO kēia mānoanoa o ke koko ke kumu o ke kahe mālie ʻana o ke koko. Hoʻonui kēia i ka pilikia o nā ʻūpā koko . Inā hele kēia ʻūpā koko i ka puʻuwai, hiki iā ia ke hana i ka hōʻeha puʻuwai, a inā hele ia i ka lolo, hiki iā ia ke hana i ka hahau. ʻAʻole wale ia, akā hiki iā ia ke hana i nā hōʻailona hoʻonāukiuki e like me ka maneʻo mau, ke kani ʻana o nā pepeiao, ka ʻeha o ka ʻōpū, ke kahe ʻana o ka ihu, a me ka ʻike pohihihi.
ʻO ka mea nui, he maʻi mau loa kēia no ke ola holoʻokoʻa, ʻaʻole hiki ke ho'ōla piha ʻia. Akā, mai hopohopo! Me ka mālama pono ʻana i ke olakino, hiki iā ʻoe ke kāohi i kēia mau hōʻailona, hoʻēmi i kou mau pilikia, a ola i ke ola maʻamau.
He maʻi ʻaʻai maoli anei kēia? Pono anei au e hopohopo?
He nīnau kēia a ka poʻe he nui. ʻAe, ʻo ka polycythemia vera kahi ʻano maʻi ʻaʻai koko. Ma ke ʻano lapaʻau, kapa mākou ia he Myeloproliferative Neoplasm (MPN) .
I kēia manawa, ke lohe kākou i ka huaʻōlelo "maʻi kanesa," makaʻu loa kākou. He mea maʻamau kēlā. Akā, pono kākou e hoʻomaopopo ʻaʻole like nā maʻi kanesa a pau. He wikiwiki loa ka ulu ʻana o kekahi a he ʻano huhū. Akā, he ʻano kanesa lohi loa ka ulu ʻana o ka PV. ʻO ia hoʻi, ʻaʻole ia e huhū i ka manawa hoʻokahi. ʻO ka hapa nui o ka manawa, ʻike ʻia kēia maʻi ma hope o 60 mau makahiki.
Ma mua o ka make ʻana mai kēia maʻi ponoʻī, ʻoi aku ka nui o ka pilikia mai nā pilikia e like me nā hōʻeha puʻuwai a me nā hahau i hoʻokumu ʻia e nā ʻūpā koko, a mākou i kūkākūkā ai ma mua. Eia kekahi, he mea kākaʻikahi loa, hiki i kēia ʻano ke lilo i ʻano maʻi koko koʻikoʻi ʻē aʻe. Akā hana kēlā i kahi pakeneka liʻiliʻi loa. No laila, ʻoiai ua kapa ʻia ʻo "maʻi kanesa," he ʻano kēia e hiki ke mālama maikaʻi ʻia me ka mālama kūpono.
Pehea ka hopena o kēia maʻi i ko mākou kino a he aha nā pilikia?
E nānā kākou pehea e hoʻopilikia ai kēia hoʻonui ʻana o nā hunaola koko ʻulaʻula i nā ʻāpana like ʻole o ko kākou kino.
- Ke kāpili ʻana o ke koko: ʻO kēia ka pilikia nui. Ke kāpili ʻia ke koko, pono ka puʻuwai e hana ikaika e pamu i ke koko. Eia kekahi, emi iho ke kahe ʻana o ke koko ma o nā kīʻaha koko palupalu o ke kino. ʻO ke ʻano kēia, emi ka oxygen i loaʻa i ko kākou mau kino a me nā ʻiʻo.
- Hana Nui ʻana o ka Spleen: ʻO kekahi o nā hana o ke kino o ko mākou kino i kapa ʻia ʻo ka spleen, ʻo ia ke kānana ʻana i nā hunaola koko kahiko a hōʻino ʻia. I kēia manawa, i ka wā e hana ʻia ai nā hunaola koko ʻulaʻula he nui, ua piha loa ka spleen. Ua like ia me ka hoʻāʻo ʻana e kānana i ka nui o ka lepo ma o hoʻokahi kānana a ua paʻa. Hiki i kēia ke hoʻoulu i ka spleen e pehu. Kāhea mākou iā ia he splenomegaly . A laila e manaʻo paha ʻoe i ke kaumaha a me ka ʻeha ma ka ʻaoʻao hema o kou ʻōpū.
E nānā kākou i ka papa ma lalo nei e ʻike i nā pilikia nui a me nā pilikia o kēia kūlana PV.
| Pilikia/Paʻakikī | Ua wehewehe maʻalahi ʻia |
|---|---|
| Nā ʻūpā koko | ʻO kēia ka pilikia nui a koke loa . Inā hele kahi ʻūpā koko i ka lolo, hiki iā ia ke hana i ka hahau ʻana, inā hele ia i ka puʻuwai, hiki iā ia ke hana i ka hōʻeha puʻuwai, a inā paʻa ia i loko o nā māmā, hiki iā ia ke hana i ka embolism pulmonary. |
| Nā Kūlana Lua | Ke wāwahi nui ʻia nā hunaola koko ʻulaʻula , piʻi aʻe nā pae waikawa uric i loko o ke kino. Hiki i kēia ke hana i ka ʻeha o nā hono e like me ka gout a me nā pōhaku puʻupaʻa. Hiki iā ia ke hoʻonui i ka waikawa o ka ʻōpū a hana i nā ʻōpū ʻōpū. |
| Ka hoʻololi ʻana i nā maʻi ʻaʻai koko ʻē aʻe | He mea kākaʻikahi loa kēia. I kekahi poʻe (he pakeneka liʻiliʻi), i ka hala ʻana o ka manawa, hiki i kēia kūlana ke lilo i maʻi ʻaʻai koko koʻikoʻi e like me ka myelofibrosis a i ʻole, kākaʻikahi loa, ka leukemia myeloid acute (AML). |
He aha nā hihia o kēia maʻi?
Hoʻomohala mālie ka PV ma nā pae he nui.
1. PV mua: I kēia pae, ʻaʻohe hōʻailona o ka hapa nui o ka poʻe. A i ʻole he mau hōʻailona liʻiliʻi wale nō ko lākou, e like me ka poniuniu a me ka luhi. I kekahi manawa ʻike ʻia ia i ka wā e hana ʻia ai kahi hoʻāʻo koko no kekahi maʻi ʻē aʻe.
2. Ke holomua nei ka PV: Hoʻonui mālie nā hōʻailona i ka hala ʻana o ka manawa. Hiki ke ʻike ʻia nā hōʻailona e like me ka maneʻo, ka pohō kaumaha, a me ka ʻeha ʻōpū ma muli o ka nui o ka spleen i kēia manawa.
3. Ke kahua hope loa ("Spent Phase"): He ʻoi aku ka paʻakikī o kēia. Ma hope o nā makahiki he nui, ua pālahalaha nā pūnaewele ʻē i hoʻoulu ai i ka maʻi ma o ko kākou iwi iwi, e hōʻino ana i ka iwi iwi. Ua like ka iwi iwi me ka hale hana kahi i hana ʻia ai kā kākou mau hunaola koko. Ke hōʻino ʻia kēia hale hana, hoʻokumu ʻia nā ʻiʻo ʻeha i loko. A laila, ʻaʻole hiki ke hana ʻia nā hunaola koko olakino. ʻO ka mea kupanaha, ʻo ka maʻi i hoʻomaka me ka hana ʻana o nā hunaola koko ʻulaʻula he nui loa e alakaʻi ai i kahi kūlana kahi i lawa ʻole ai nā hunaola koko ʻulaʻula, ʻo ia hoʻi ka anemia .
He aha nā hōʻailona e hiki ke ʻike ʻia?
Hoʻomohala mālie pinepine nā hōʻailona o ka PV i ka hala ʻana o ka manawa. Hiki i kekahi poʻe ke hele no nā makahiki me ka ʻole o nā hōʻailona. E nānā kākou i ke ʻano o kēia mau hōʻailona.
| ʻAno hiʻohiʻona | Nā Laʻana |
|---|---|
| Nā hiʻohiʻona maʻamau e puka mua mai ana | |
| Nā pilikia maʻamau | ʻEha ke poʻo, poniuniu, luhi loa, koko kiʻekiʻe, ʻike pōwehiwehi. |
| Nā hiʻohiʻona kikoʻī e ʻike ʻia ma hope | |
| Nā loli ʻili | Ka maneʻo nui, ka ʻulaʻula, a me ka mumū o nā lima a me nā wāwae, ʻoiai ma hope o ka ʻauʻau ʻana i ka wai wela . |
| Nā hiʻohiʻona ʻē aʻe | Ka hou nui ʻana i ka pō, ka paʻakikī o ka hanu ʻana (ʻoi aku hoʻi i ka wā e moe ana), ke kahe ʻana o ka ihu a me ke kahe ʻana o ke aʻa, a me ka pohō kaumaha me ke kumu ʻole. |
| Nā hōʻailona e kū mai me nā pilikia | |
| ʻO ka splenomegaly | ʻEha ma ka ʻaoʻao hema o luna o ka ʻōpū, pehu, manaʻo piha ʻoiai ma hope o ka ʻai iki ʻana. |
| ʻO ke koko koko (DVT) | Pehu, ʻulaʻula, ʻeha ma ka lima a i ʻole ka wāwae. |
| ʻO ka ʻōpū | ʻEha nui a me ka pehu ʻana i nā hono, ʻoiai hoʻi ka manamana wāwae nui. |
No ke aha lā kēia e hana nei? He aha ke kumu?
ʻO ke kumu nui o kēia, he loli ʻana o ka gene i loko o kahi cell kumu i loko o ko kākou iwi iwi. Ua like ia me hoʻokahi laina o ke code i loko o kahi polokalamu kamepiula e hewa ana. A laila e hele hewa ana ka polokalamu holoʻokoʻa.
Aia nā genes e haʻi aku i kā mākou mau hunaola koko e ulu. ʻOi aku ma mua o 90% o nā maʻi PV he mutation i loko o kahi gene i kapa ʻia ʻo JAK2 . Ma muli o kēia kuhikuhi hewa, loaʻa i ka iwi iwi ke kauoha, "E hoʻomau i ka hana ʻana i nā hunaola koko ʻulaʻula, mai hoʻōki." No laila, hana ʻia nā hunaola koko ʻulaʻula me ke kaohi ʻole.
ʻO ka mea nui, ʻaʻole i hoʻoilina pinepine ʻia kēia hoʻololi ʻana o ka genetic. ʻO ia hoʻi, ʻaʻole ia e hoʻoili ʻia mai ka makuahine a i ka makuakāne. Hana ʻia kēia hoʻololi ʻana i ka wā o ke ola, no kekahi kumu i ʻike ʻole ʻia.
Pehea e ʻike pololei ai ke kauka i kēia maʻi?
Inā loaʻa iā ʻoe kēia mau hōʻailona, e nīnau mua kāu kauka iā ʻoe e pili ana i kāu mau hōʻailona. A laila e hana lākou i kekahi mau hoʻokolohua e hōʻoia i ka hōʻailona. Wahi a ka World Health Organization (WHO), pono e hoʻokō ʻia ʻekolu mau kūlana e ʻike ai i ka PV.
1. Nā Hoʻāʻo Koko: ʻO kēia ka hoʻāʻo mua a koʻikoʻi loa. Nānā ia e ʻike inā kiʻekiʻe loa ka helu o kāu mau cell koko ʻulaʻula.
- Nā pae hemoglobin kiʻekiʻe.
- Hoʻonui ʻia ka hematocrit (ka pakeneka o nā hunaola ʻulaʻula i loko o ke koko).
2. Biopsy o ka iwi iwi: Lawe ʻia kahi hāpana liʻiliʻi loa o ka iwi iwi mai ka iwi ʻūhā a nānā ʻia ma lalo o kahi microscope e ʻike inā he mau hunaola ʻē i loko o ka iwi iwi.
3. Ka hoʻāʻo ʻana i ka genetic a i ʻole nā pae hormone:
- Hana ʻia kahi hoʻāʻo genetic e nānā i ka mutation gene JAK2 .
- A i ʻole, nānā lākou i ka pae o kahi hormone i kapa ʻia ʻo erythropoietin (EPO), ka mea i hana ʻia e nā puʻupaʻa. Hōʻailona kēia hormone i ka iwi iwi e hana i nā hunaola koko ʻulaʻula. I ka PV, hoʻōki ke kino i ka hana ʻana i kēia hormone no ka mea ke hana ʻia nei nā hunaola koko ʻulaʻula ma o lākou iho. ʻO ka hopena, haʻahaʻa loa nā pae EPO.
He aha nā lāʻau lapaʻau no kēia?
ʻElua mau pahuhopu nui o ka mālama ʻana i ka PV. ʻO kekahi e hōʻemi i ka pilikia o nā ʻūpā koko, a ʻo kekahi e kāohi i nā hōʻailona hoʻopilikia.
- Phlebotomy - Wehe ʻana i ke koko: ʻO kēia ka lāʻau lapaʻau i hoʻohana pinepine ʻia a maʻalahi hoʻi. E like me ka hāʻawi ʻana i ke koko, lawe ʻia kahi liʻiliʻi o ke koko (ma kahi o hoʻokahi paina) mai kou kino i nā manawa maʻamau. Hiki i kēia ke hōʻemi i ka nui o kou koko a me ka helu o nā hunaola koko ʻulaʻula.
- ʻAspirin haʻahaʻa: Hiki i kāu kauka ke ʻōlelo aku e lawe i kahi pila aspirin haʻahaʻa i kēlā me kēia lā e pale aku i nā ʻūpā koko. Eia nō naʻe, ʻaʻole kūpono kēia inā loaʻa iā ʻoe nā pilikia e like me nā ʻōpū ʻōpū.
- Nā lāʻau hoʻēmi koko ʻulaʻula: Inā koʻikoʻi ka maʻi a inā ʻaʻole lawa ka hoʻoili koko wale nō, hāʻawi ʻia nā lāʻau e hōʻemi ana i ka hana ʻana o nā koko ʻulaʻula. ʻO nā laʻana e komo pū me ka hydroxyurea a me ka interferon alfa .
- Lapaʻau no ka maneʻo: Hiki ke kuhikuhi ʻia nā antihistamines a i ʻole nā lāʻau lapaʻau ʻē aʻe e kāohi i ka maneʻo nui.
Na kāu kauka e hoʻoholo i kahi o kēia mau lāʻau lapaʻau e kūpono loa iā ʻoe, no laila e ʻimi pono i ka lāʻau lapaʻau e like me ke kuhikuhi a kāu kauka.
Pehea lā e hiki ai iaʻu ke ola maikaʻi me kēia maʻi?
Ke ʻike ʻoe ua loaʻa iā ʻoe kēia maʻi, nui nā mea hiki iā ʻoe ke hana e ola ai me ia.
- E ʻike pinepine i kāu kauka: E hele i nā keʻena lapaʻau i ka manawa kūpono, e hana i nā hoʻokolohua koko. He mea nui loa i kāu kauka ke nānā i kou kūlana.
- Hoʻoikaika Kino: Hiki i ka hoʻoikaika kino kaulike ke kōkua i ka mālama ʻana i ke kahe maikaʻi o ke koko.
- Mai puhipaka: Hoʻohāiki ka puhipaka i nā kīʻaha koko, kahi e hoʻonui ai i ka pilikia o ke kāpili ʻana o ke koko.
- E pale i nā wahi me nā pae oxygen haʻahaʻa: ʻO nā wahi kiʻekiʻe e like me nā piko mauna he haʻahaʻa nā pae oxygen. E pale i ka hele ʻana i ia mau wahi.
- Kaohi i ke koko: ʻO ka mālama ʻana i ke kaumaha o ke kino olakino e hiki ke kōkua i ka kaohi ʻana i ke koko.
- E inu i ka wai nui: Hiki i ka maloʻo ʻana ke hoʻonui i ke kāpili ʻana o ke koko. No laila, e inu i ka wai nui i ka lā a pau.
ʻOiai he maʻi ʻaʻai ka PV, nui ka poʻe e ola maikaʻi ana no nā makahiki he ʻumi ma hope o ka ʻike ʻia ʻana o ka maʻi. ʻO ka hoʻoweliweli nui loa, ʻo ia nā pilikia mai nā ʻōpū koko, ma mua o ke kanesa ponoʻī. No laila, ʻo ka mālama ʻana i ka pilina mau me kāu kauka a me ka hahai ʻana i kahi nohona olakino he mea nui ia e like me ka mālama ʻana i kēia maʻi.
Leka Lawe-Home
- ʻO ka Polycythemia vera (PV) kahi maʻi ʻaʻai koko e ulu lohi ana e hoʻoulu ai i ke kino e hana i nā hunaola koko ʻulaʻula he nui loa.
- Mai makaʻu i ka huaʻōlelo "maʻi ʻaʻai." Me ka mālama pono ʻana a me ka hoʻokele ʻana, hiki iā ʻoe ke ola olakino no nā makahiki he ʻumi.
- ʻO ka pilikia nui a koke loa o kēia maʻi, ʻo ia nā ʻūpā koko, i hana ʻia e ka mānoanoa o ke koko. Hoʻonui kēia i ka pilikia o ka hōʻeha puʻuwai a me ka hahau.
- ʻO nā hōʻailona maʻamau e komo pū ana me ka maneʻo nui, ka ʻeha poʻo pinepine, a me ka poniuniu ma hope o ka ʻauʻau ʻana i ka wai wela.
- ʻO ka lāʻau lapaʻau e komo pū ana me ka wehe ʻana i ke koko (phlebotomy) i nā manawa maʻamau a me nā lāʻau lapaʻau e pale ai i nā ʻōpū koko.
- He mea nui e noho mau i ka launa pū ʻana me kāu kauka a loaʻa i nā hoʻokolohua a me nā lāʻau lapaʻau kūpono.
- He mea nui ka pale ʻana i ka puhipaka, ka hoʻoikaika kino, a me ka mālama ʻana i kahi nohona olakino i ka mālama ʻana i ka maʻi.
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