Kua kite koe i tētahi o tō whānau, i tētahi rānei e mōhiotia ana e koe, e hemo ohorere ana, e hinga ana i a ia e whakakorikori tinana ana, e mataku ana rānei? I ētahi wā, kei muri i ēnei āhuatanga he mate ngākau kāore anō kia rangona nuitia, engari he tino kino. Ko tētahi o aua mate ko te Long QT Syndrome (LQTS). Ahakoa he ahua uaua te ingoa, me mārama noa iho.
He aha te mate QT roa (LQTS)?
I te whakarapopototanga, ko te Long QT Syndrome (LQTS) he raruraru kei roto i te pūnaha hiko o tō ngākau.
Whakaarohia tō ngākau he uira kei runga i te kāmera. Kia kotahi te pao, me whakakī ake i mua i te pao anō. Koinei te āhua o te pūnaha hiko o te ngākau ki te whakakī anō i waenga i ngā pao. Ko te wā e pau ana kia puta ai tēnei ko te mea e inehia ana e tātou i runga i te ECG (Electrocardiogram) ko te wā QT .
He roa ake tēnei wā whakahou mō te tangata whai LQTS i te tangata noa. Ko te tikanga o tēnei ka roa ake te whakarite o te pūnaha hiko o te ngākau mō te pao e whai ake nei.
Me pēhea tēnei e tupu ai?
Ko te mahi hiko o tō tātou ngākau e whakahaerehia ana e ngā matūriki iti e utua ana he hiko e kiia nei ko ngā iona (hei tauira, te konutai, te pāhare pākawa, te konupūmā). Ka neke ēnei iona ki roto, ki waho hoki i ngā pūtau uaua o te ngākau mā roto i ngā kuaha iti e kiia nei ko ngā hongere iona .
I roto i te mate QT roa, kāore ēnei hongere katote e mahi tika ana, kāore rānei i te nui. Nā tēnei ka roa rawa te wā e whakakī anō ai te manawa.
Ina roa te wā QT i tēnei ara, ka puta he tino morearea, he tere, he koretake te ngakau (arrhythmia) e pā mai ana ki te ora. I roto i ngā kupu hauora, ka kiia tēnei ko te Torsades de Pointes . He momo mate morearea tēnei e kiia nei ko te Ventricular Tachycardia .
He aha ngā momo matua o ngā LQTS?
Ka taea te wehewehe i ngā LQTS kia rua ngā momo matua: te tuku iho me te whiwhi.
1. LQTS Tuku Iho/Whānau
Nā te hapa ira tēnei i puta ai. Arā, ka tukuna iho mai i ngā mātua ki ngā tamariki. I konei anō hoki, he maha ngā momo matua.
| Momo whānau o LQTS | He whakamārama māmā |
|---|---|
| Te Mate Romano-Ward | Koinei te momo tino noa. I tēnei wā, tera pea kei tētahi o ngā mātua te LQTS. E 50% te tūponotanga ka riro i te tamaiti te mate. He mea noa te rongo (te whakarongo) i roto i ēnei tāngata. |
| Ko Jervell me Lange-Nielsen Syndrome | He tino onge tēnei. I tēnei āhuatanga, ko ngā mātua e rua he kawe i te ira LQTS (tērā pea kāore he tohu o te mate i a rāua). E 25% te tūponotanga ka riro i te tamaiti te mate. He maha ngā wā ka whānau turi ngā tamariki whai mate nei. |
| Te Mate o Timoti | He momo tino onge anō hoki tēnei. Kāore e pā ki te ngākau anake, engari ki ētahi atu wāhanga o te tinana anō hoki. |
2. Ngā LQTS i Whiwhihia
Ehara tēnei i te mea nā ngā āhuatanga ira. Tērā pea ka whānau mai ētahi tāngata me te ngoikore iti o ō rātou hongere ioni. Engari ehara tēnā i te raruraru. Heoi anō, ka puta ake pea tēnei āhuatanga nā tētahi āhuatanga o waho.
Ko ngā take matua ko:
- Ngā rongoā: Ētahi paturopi, antidepressants, antiarrhythmics, me diuretics.
- Te iti o te tote o te tinana: He iti te taumata o te pāhare pāporo, te konupūmā, te konupūmā rānei i roto i te toto.
- Ētahi atu take: Ngā mate kai pēnei i te anorexia nervosa, te kino o te pūnaha io, me ētahi paitini.
He aha ēnei tohu?
Ko te mea tino mōrearea mō te LQTS ko te tata ki te 50% o te tangata kāore e pāngia e tetahi tohu . Heoi, ina puta ngā tohu, he maha ngā wā ka kino. Ka puta ēnei tohu ina puta te tauira manawataki o te ngākau morearea kua whakahuatia i mua ake nei e kiia nei ko te Torsades de Pointes.
| Tohu matua | Ka ahatia? |
|---|---|
| Te ngoikore o te ngākau | Nā te koretake o te manawa o te ngakau, kāore e ranea te toto e whiwhi ana te roro. Ka taea e tēnei te ngaro ohorere o te māramatanga me te hinga. |
| Ngā mate hopuhopu | Ka puta pea te āhua e kiia nei ko te haurangi i ētahi wā nā te heke o te rere o te toto ki te roro. |
| Te Hopu Manawa | Ki te haere tonu taua āhua manawataki morearea o te ngākau, ka mutu pea te patu o te ngākau. |
| Matenga ohorere | Ka mate pea te tangata i te hopukanga o te manawa mēnā kāore e rongoatia tonutia. I ētahi wā, koinei te tohu tuatahi o te tangata whai LQTS. |
Ngā āhuatanga ka nui ake te tūponotanga o ngā tohu:
- I a koe e whakakorikori tinana ana , i muri rānei i tō mutunga.
- I te wā o tētahi whakaohooho hinengaro kaha, ohorere (hei tauira, ina tino mataku, ina ohorere rānei).
- I te wā e moe ana , i te oho ake rānei i te moe.
Ko wai kei te nui ake te mōrearea ki te whakawhanake i tēnei mate?
Ko ngā tāngata e whai ake nei he nui ake te mōrearea ki te whakawhanake i te LQTS:
- Ngā whanaunga tata (ngā mātua, ngā tuākana, teina, ngā tamariki) o tētahi tangata whai LQTS.
- Ko te hunga he hītori whānau mō te ngaronga mahara kāore i te whakamāramatia, te haurangi, te mate ohorere rānei i te wā taitamariki.
- Ngā tamariki i whānau turi (nā te tūponotanga o te mate Jervell me te mate Lange-Nielsen).
- Ngā tāngata whai mate manawa pērā i te cardiomyopathy.
- Ko te hunga e whakamahi ana i ngā rongoā e whakaroa ana i te wā QT.
Mena kua tāpaetia tētahi o tō whānau ki te mate LQTS, he mea pai kia whakamātauria koe mōna. Tuatahi, kōrerotia ki tō tākuta. Māna koe e tuku kia whakamātauria he ECG.
Me pēhea koe e mōhio ai mēnā kei a koe te LQTS?
Ko te huarahi matua ki te tautuhi i tēnei ko te whakamahi i te ECG (Electrocardiogram).Whakamātautau. Ka ine te tākuta i te wā QT i runga i te ECG. I te nuinga o te wā, ki te neke atu i te 450 mirihekona tēnei wā, ka taea te whakapae he LQTS.
Hei tāpiri, ka tūtohu pea te tākuta i ētahi atu whakamātautau:
- Ngā whakamātautau toto: Tirohia ngā taumata o ngā tote i roto i te tinana, pērā i te pāhare pāporo me te konupora.
- Whakamātautau Taumahatanga Whakakorikori Tinana: Tirohia te āhua o te panoni o te mahi a tō ngākau i te wā e whakakorikori ana.
- Aroturuki Hāereere (Aroturuki Holter): Ka whakatakotoria he taputapu iti ki tō uma hei hopu tonu i te manawataki o tō manawa mō ngā haora 24, neke atu rānei.
- Whakamātautau ira: Tirohia mēnā he whakarerekētanga ira e pā ana ki te LQTS.
He aha ngā maimoatanga mō tēnei?
Ahakoa kāore e taea te whakaora katoa i te LQTS, he maimoatanga kei reira hei āwhina i te whakahaere i ngā tohu, te ārai i te mōrearea o te mate ohorere, me te noho i te oranga noa.
| Tikanga maimoatanga | Whakaahuatanga |
|---|---|
| Ngā rongoā | He tokomaha ngā tāngata (tae atu ki te hunga kāore he tohu) e hoatu ana ki a rātou ngā rongoā ārai-beta . Ka āwhina ēnei ki te whakahaere i te tere o te ngakau, me te whakaiti i te urupare a te ngakau ki ngā whakaoho ohorere. |
| Ngā Pūrere |
|
| Pokanga | Te Whakakorenga o te Manawa Mauī (LCSD) mō ngā tūroro mōrearea nui e uaua ana ki te whakahaere mā te whakamahi i ngā rongoā me ngā taputapuKo tēnei pokanga he tango i ētahi o ngā io e haere ana ki te ngākau, hei whakaiti i te urupare a te ngākau ki ngā whakaohooho ohorere. |
Ngā mea hei whakaaroaro māu ina noho tahi ana me te LQTS
Ka taea te noho noa, te ora tonu me te LQTS. Heoi anō, he iti noa ngā mea me mōhio koe i roto i tō oranga o ia rā.
1. Ngā haruru ohorere me te ahotea hinengaro
Mō te hunga whai momo LQTS, ka mōrearea ngā haruru ohorere, nui (hei tauira, he whakaoho, he tangi waea) te ohorere ohorere, te wehi rānei.
- Kōrero atu ki te whānau me ngā hoa kāore i te haumaru te whakatoi i a koe.
- Engari i ngā karaka whakaoho haruru, whakamahia ngā mea e whakatangi ana i ngā waiata mārie.
2. Te whakakori tinana me ngā hākinakina
Mo te hunga whai momo LQTS, ka tino morearea ngā hākinakina whakataetae me te whakakori tinana kaha.
- Me pātai atu ki tō tākuta he aha ngā mahi whakakori tinana e tika ana, e kore hoki e tika ana māu.
- He tino morearea te kaukau mō ētahi tāngata. Tērā pea ka toremi koe mēnā ka ngaro tō mohiotanga i roto i te wai. Kaua e kaukau ko koe anake.
3. Kia tino tupato ki ngā rongoā!
Koinei te mea tino nui. Ahakoa he maha ngā rongoā noa, ka kino ake pea te LQTS.
- Kōrerotia ki ngā tākuta katoa e rongoā ana i a koe kei a koe te LQTS.
- I mua i te tohu rongoā mō tētahi atu mate, me kōrero ki tō tākuta ngakau.
- Kaua e hoko i tētahi rongoā kāore he whakahaunga mai i te whare rongoā, i tētahi atu wāhi rānei, me te kore kōrero ki te tākuta (haunga ngā mea pēnei i te paracetamol me te aspirin).
Āhea ahau me toro atu ki te tākuta?
Kia kitea tō mate LQTS, me toro atu koe ki tō tākuta i te iti rawa kotahi i te tau mō tētahi tirotiro hauora. He pai ake te toro atu ki tētahi tohunga hiko, he tākuta e tohunga ana ki ngā mate manawataki o te ngākau.
Mena kei tō tamaiti tēnei āhuatanga, me toro atu koe ki te tākuta i ngā wā katoa, me whakarerekē hoki te horopeta o te rongoā i runga i tōna taumaha.
Āhea ahau me haere ki te ETU (Emergency Treatment Unit)?
Ki te kore e mōhio tetahi, ā, ka hinga, waea atu ki te waka tūroro tonu. I tēnei wā, ki te mea he tangata kua whakangungua ki te mahi CPR (cardiopulmonary resuscitation), me mahi. I roto i tēnei āhuatanga, he mea nui ia hēkona.
Karere Tangohia ki te Kāinga
- Ko te mate QT roa (LQTS) he āhuatanga ira, he āhuatanga rānei kua riro mai i te tinana, e roa rawa ai te wā e whakahou ai te pūnaha hiko o te ngākau.
- Ko te ngaronga ohorere o te māramatanga, ngā haurangi, me te ngoikore o te ngākau kāore i te whakamāramatia ngā tohu matua. Heoi, he tokomaha te hunga kāore pea e pāngia e tetahi tohu.
- Mena kei roto i tō whānau tēnei mate, he hītori rānei tōna o te matenga ohorere i te wā taitamariki, he mea tino nui kia whai whakamātautau ECG anō hoki koe.
- I mua i te tango i tētahi rongoā (ahakoa mō ētahi atu mate), kōrero ki tō tākuta kia mōhio ai koe he haumaru mōu.
- Mā te maimoatanga tika (rongoā, taputapu ICD) me ngā huringa momo noho, ka taea e te tangata whai LQTS te ora i te oranga hauora me te tino pai. Kāore he take e wehi ai, engari he mea nui kia tūpato.
💬 Comments (0)
Kaore ano kia tukuna he korero. Tāpirihia to korero ki konei mo te wa tuatahi.
Tāpirihia to korero