Ingabe wena noma othile oseduze nawe unesifo esingavamile esibizwa ngokuthi i-hATTR amyloidosis ? Khona-ke, ukuya kudokotela cishe kuyingxenye evamile yokuphila kwakho. Kodwa njalo lapho siya kudokotela, kubaluleke kakhulu ukusebenzisa kahle lokho kuvakasha. Indlela engcono kakhulu yokwenza lokho ukulungiselela kancane ngaphambi kokuya kudokotela. Uma uya kudokotela ngale ndlela, uzozizwa ukhululekile futhi kuzosiza udokotela ukuthi anqume ukwelashwa okufanele kakhulu kuwe. Ake sibone ukuthi ungakulungiselela kanjani lokhu ngqo?
Okokuqala, ake siqonde, iyini i-hATTR Amyloidosis?
Kalula nje, i-hATTR yisifo esingavamile esizuzwa njengefa, okusho ukuthi sidluliselwa ngofuzo emindenini. Uma sikhuluma iqiniso, singenye yezinhlobo zezifo ezibizwa ngokuthi i-Transthyretin Amyloidosis (ATTR). Lesi sifo singaba sibi kakhulu ngokuhamba kwesikhathi, ngakho-ke kubaluleke kakhulu ukuthola lesi sifo bese uqala ukwelashwa ngokushesha okukhulu .
Lesi sifo singathinta izitho eziningi zomzimba wethu, ngakho-ke kungadingeka ukuthi ubonane nochwepheshe abaningana abahlukene esikhundleni soyedwa. Isibonelo:
- Udokotela wenhliziyo
- Udokotela Wegazi
- Udokotela wezinzwa
Akubona bonke laba dokotela abasebenza ohlelweni olufanayo lwezibhedlela. Ngakho-ke ungacabangi ukuthi ulwazi lwakho olunikezwa udokotela oyedwa luyatholakala komunye. Ngezinye izikhathi, ngenxa yokuthi izinhlelo zamakhompyutha zezibhedlela azixhunyiwe, amarekhodi akho ezokwelapha awabelwana ngawo. Yingakho kubalulekile ukuletha ulwazi lwakho nawe kuzo zonke izikhathi zokuqokwa.
Izinto okufanele uziphathe nakanjani uma uya kudokotela
Ngisho noma udokotela wakho enamarekhodi akho ezokwelapha amadala, kungumqondo omuhle ukuletha ulwazi lwakamuva nawe kuyo yonke i-aphoyintimenti. Kuzoba lula kakhulu kuwe ukuthi lezi zinto zihlelwe futhi zilungele ifayela elilodwa.
| Okufanele ukulungiselele | Imininingwane okufanele ifakelwe |
|---|---|
| Uhlu lwezimpawu | Bhala phansi zonke izimpawu ze-hATTR ozizwayo. Isibonelo, ukuhlanza, amehlo omile, amabala amnyama antanta phambi kwamehlo akho, ukwehla kwesisindo, ukuzizwa usuthi ngisho nangemva kokudla ukudla okuncane, ukuvuvukala emilenzeni yakho, i-carpal tunnel syndrome. Futhi, tshela udokotela wakho nganoma yiziphi izimpawu ezingavamile njengekhanda elibuhlungu, isifo sohlangothi, ukulahlekelwa yinkumbulo, noma ukuxhuzula. Izimpawu zingashintsha ngokuhamba kwesikhathi, ngakho tshela udokotela wakho nganoma yiziphi izinguquko. Kubalulekile ukutshela udokotela wakho uma unezinye izimpawu ocabanga ukuthi azihlobene ne-hATTR. |
| Imithi, amavithamini kanye nezithasiselo | Bhala phansi yonke imithi, amavithamini, kanye nezithasiselo ozithathayo. Faka umthamo, izikhathi ozithatha ngazo, kanye nekhemisi elikunikezayo. Uma kukhona imithi ethile ye-hATTR (isb., eplontersen (Wainua) , inotersen (Tegsedi) , patisiran (Onpattro) , tafamidis (Vyndamax) ), qiniseka ukuthi uyibhala phansi. Ngisho nemithi ethengiswa ngaphandle kwemithi kadokotela efana ne-Panadol ne-Vitamin C ingafakwa kulolu hlu. |
| Umlando wezokwelapha wakho nomndeni wakho | Tshela udokotela wakho nganoma yiziphi ezinye izimo zezokwelapha onazo (isib. isifo sikashukela, umfutho wegazi ophakeme), kanye nanoma yikuphi ukuhlinzwa oke wakwenza. Okubaluleke kakhulu, tshela amalungu omndeni wakho aseduze (abazali, abafowenu nodadewenu) nganoma yiziphi izimo zezokwelapha onazo. Uma kukhona emndenini wakho one-hATTR, mtshele ukuthi yiziphi izimpawu eziyinhloko. |
| Imiphumela Yokuhlolwa | Letha yonke imiphumela yokuhlolwa ehlobene ne-hATTR. Lokhu kufaka phakathi ukuhlolwa kwegazi, ukuhlolwa kwezinzwa, ukuhlolwa kwenhliziyo (ECG, Echo), imibiko yokuskena kwe-MRI, kanye nemibiko ye-biopsy. Ikakhulukazi, uma unezibonelo zezicubu ezithathwe ku-biopsy yakho yamafutha esiswini noma kwezinye izitho zomzimba, qiniseka ukuthi uziletha. |
| Imiphumela Yokuhlolwa Kofuzo | Lona umbiko obaluleke kakhulu. Qiniseka ukuthi uletha umbiko wokuqala wokuhlolwa kwezakhi zofuzo oqinisekisile ukuthi une-mutation ku-Transthyretin (TTR) gene. Uma kukhona emndenini wakho (abazali, abafowenu nodadewenu, izingane) oke wahlolwa izakhi zofuzo ze-hATTR, kufanelekile ukuletha leyo mibiko nawe. |
| Uhlu lwemibuzo okufanele uyibuze | Ungase ukhohlwe ukuthi ufuna ukubuza udokotela ini. Ngakho-ke, ngaphambi kokuba uhambe, bhala phansi noma yimiphi imibuzo onayo ephepheni. Futhi, letha incwadi yokubhala kanye nepeni ukuze ubhale phansi lokho okushiwo udokotela. Uma ukuthola kunzima ukwenza lezi zinto wedwa, ungesabi ukuletha ilungu lomndeni noma umngane omethembayo ukuze akusize. |
Kungani kubaluleke kangaka ukulungiselela ngale ndlela?
Cabanga nje, yonke le mininingwane enemininingwane oyinikezayo ifana nesithombe kudokotela. Kumsiza ukuba aqonde ngokugcwele isimo sakho sempilo. Kulapho kuphela lapho engase asikisele khona ukwelashwa okufanele nokunembile kakhulu kuwe.
Njengoba kushiwo ngaphambili, ulwazi aluhlali lwabelwana phakathi kwezibhedlela. Ngakho-ke ungacabangi ukuthi udokotela wakho uyazi umlando wakho wezokwelapha. Kungcono futhi kuphephile ukuletha ulwazi lwakho.
Uma uzikhandla kancane futhi ulungiselela ngaphambi kokuya kudokotela, ungathola okuningi kulokho kuhlangana. Kuzoba usizo olukhulu hhayi kuwe kuphela, kodwa nakudokotela okwelaphayo.
Umlayezo Wokuya Nawe Ekhaya
- Njalo uma uya kudokotela ukuze uthole i-hATTR, lungiselela kusengaphambili.
- Gcina izimpawu zakho, yonke imithi oyisebenzisayo, imibiko yokuhlolwa (ikakhulukazi imibiko yokuhlolwa kofuzo), kanye nomlando wezokwelapha womndeni kufayela elilodwa.
- Bhala phansi imibuzo yakho ephepheni kusengaphambili, ngoba ungase uyikhohlwe. Ungesabi ukuletha othile ukuze akusize.
- Ulwazi olunikezayo luzosiza kakhulu udokotela ukuqonda isimo sakho futhi akunikeze ukwelashwa okungcono kakhulu.
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