Nyob zoo! Hnub no peb yuav tham txog ib yam tshuaj uas nyuaj me ntsis, tab sis tseem ceeb heev. Yog tias koj lossis ib tug neeg hauv koj tsev neeg muaj mob hu ua Cystic Fibrosis, koj tus kws kho mob yuav tau sau tshuaj hu ua Trikafta. Nws muaj peb yam tshuaj sib xyaw ua ke hu ua Elexacaftor, Tezacaftor, thiab Ivacaftor. Qhov no tsis zoo li tshuaj ib txwm muaj, tab sis yog tshuaj tshwj xeeb uas mus rau hauv paus ntawm tus kab mob thiab cuam tshuam rau nws. Yog li cia peb saib seb cov tshuaj no siv li cas, yam dab tsi yuav tsum ceev faj txog, thiab nws tuaj yeem ua rau muaj kev phiv dab tsi.
Muaj dab tsi tshwm sim tiag tiag nrog cov tshuaj no?
Hais yooj yim xwb, Cystic Fibrosis yog ib qho mob caj ces uas ua rau ntau yam kua dej hauv lub cev, tshwj xeeb yog cov hnoos qeev hauv cov kabmob xws li lub ntsws thiab lub qog pancreas, tuab thiab nplaum dhau. Qhov no tuaj yeem ua rau ua pa nyuaj, kis kab mob ntsws, thiab teeb meem zom zaub mov.
Cov tshuaj no, Trikafta, ua haujlwm los ntawm kev kho ib feem ntawm cov protein uas tsis ua haujlwm zoo rau cov neeg mob uas muaj kev hloov pauv tshwj xeeb hu ua F508del . Qhov no txhais tau tias es tsis txhob tswj cov tsos mob, nws pab txo qhov cuam tshuam ntawm qhov tsis zoo ntawm cov noob caj ces uas ua rau muaj tus kab mob. Qhov no yog qhov kev pab loj rau cov neeg mob no.
Tej yam koj yuav tsum qhia rau koj tus kws kho mob ua ntej pib noj tshuaj
Nws yog ib qho tseem ceeb heev rau koj tus kws kho mob kom paub txog koj keeb kwm kev noj qab haus huv tag nrho ua ntej sau cov tshuaj no. Cov tshuaj no tsis haum rau txhua tus. Nco ntsoov qhia rau koj tus kws kho mob, tshwj xeeb tshaj yog tias koj muaj ib qho ntawm cov mob no:
- Yog koj muaj kab mob raum .
- Yog tias koj muaj kab mob siab (qhov no tseem ceeb heev).
- Yog tias koj muaj kev tsis haum rau Elexacaftor, Tezacaftor, Ivacaftor, lossis lwm yam tshuaj, khoom noj, lossis xim uas muaj nyob hauv cov tshuaj no.
- Yog tias koj cev xeeb tub lossis npaj yuav muaj menyuam hauv lub sijhawm ze.
- Yog koj yog niam pub niam mis.
Raws li cov ntaub ntawv no, koj tus kws kho mob yuav txiav txim siab seb cov tshuaj no puas yog rau koj lossis seb puas yuav tsum hloov qhov ntau npaum li cas.
Kuv siv cov tshuaj no li cas?
Yuav kom tau txais txiaj ntsig ntau tshaj plaws ntawm cov tshuaj no, nws yog ib qho tseem ceeb uas yuav tsum noj nws raws li cov lus qhia.
Qhov tseem ceeb tshaj plaws yog yuav tsum noj cov tshuaj no nrog pluas noj uas muaj roj lossis rog , vim tias cov tshuaj hauv cov tshuaj no lub cev nqus tau zoo tshaj plaws thaum muab sib xyaw nrog rog.
Piv txwv li, koj tuaj yeem noj cov tshuaj no:
- Nrog qe
- Nrog txiv laum huab xeeb
- Nrog ib lub tais nrog cheese (piv txwv li cheese pizza)
- Nrog txiv qaub ntsuab
- Nrog yogurt (yogurt puv rog)
Lwm yam uas yuav tsum nco ntsoov:
- Nqos cov tshuaj tag nrho . Tsis txhob rhuav lossis tsoo lawv, lossis zom lawv zoo li zom cov pos hniav.
- Sim noj koj cov tshuaj tib lub sijhawm txhua hnub. Thaum koj ua qhov no ua ib tus cwj pwm lawm, koj yuav tsis hnov qab.
- Tsis txhob noj cov tshuaj no nrog txiv hmab los yog kua txiv kab ntxwv qaub. Cov khoom xyaw hauv kua txiv kab ntxwv qaub tuaj yeem cuam tshuam rau txoj kev ua haujlwm ntawm cov tshuaj no.
- Tsis txhob tsum noj koj cov tshuaj kom txog thaum koj tus kws kho mob hais kom koj tsum.
- Cov tshuaj no qee zaum muab rau cov menyuam yaus hnub nyoog tshaj 6 xyoo, tab sis tsuas yog nyob rau hauv kev saib xyuas tshwj xeeb ntawm kws kho mob xwb.
Yog tias kuv noj tshuaj ntau dhau tam sim ntawd, yuav ua li cas?
Yog koj xav tias koj tau noj cov tshuaj no ntau dhau lawm, tsis txhob ntshai. Hu rau Lub Chaw Qhia Txog Tshuaj Lom Hauv Tebchaws tam sim ntawd ntawm Tsev Kho Mob Hauv Tebchaws Colombo . Lossis mus rau Chav Kho Mob Thaum Muaj Xwm Ceev (ETU) ntawm tsev kho mob ze tshaj plaws. Nws yog qhov zoo tshaj plaws yog tias koj tuaj yeem nqa lub pob tshuaj nrog koj thaum koj mus.
Tej yam uas yuav tsum tsis txhob siv nrog cov tshuaj no
Trikafta yog ib yam tshuaj muaj zog heev uas tuaj yeem cuam tshuam nrog lwm yam tshuaj. Yog li ntawd, koj yuav tsum qhia rau koj tus kws kho mob txog txhua yam tshuaj uas koj noj, tsis yog cov uas koj tus kws kho mob sau xwb, tab sis kuj yog cov tshuaj uas yuav tsis tas yuav muaj ntawv yuav tshuaj, cov vitamins, thiab cov tshuaj ntsuab.
| Cov tshuaj thiab cov khoom noj uas yuav cuam tshuam nrog Trikafta | |
|---|---|
| Tsis txhob noj Trikafta nrog cov no | |
| Qee cov tshuaj rau kev qaug dab peg | Carbamazepine, Phenobarbital, Phenytoin |
| Cov tshuaj tua kab mob | Rifampin, Rifabutin |
| Cov khoom siv tshuaj ntsuab | St. John's Wort |
| Khoom noj | Txiv kab ntxwv qaub thiab kua txiv kab ntxwv qaub |
| Nug koj tus kws kho mob yog tias koj noj Trikafta nrog cov no. | |
| Lwm yam tshuaj tua kab mob | Clarithromycin, Erythromycin |
| Cov tshuaj tua kab mob fungal | Fluconazole, Itraconazole, Ketoconazole |
| Cov tshuaj uas tiv thaiv kab mob | Cyclosporine, Sirolimus, Tacrolimus |
| Lwm yam | Digoxin, Warfarin, qee cov tshuaj kho mob ntshav qab zib (piv txwv li Glimepiride, Glipizide) |
Cov kev mob tshwm sim ntawm kev noj tshuaj yog dab tsi?
Ib yam li lwm yam tshuaj, Trikafta tuaj yeem ua rau muaj qee qhov kev phiv. Qee qhov ntawm cov no tuaj yeem ua rau mob hnyav. Yog li nws yog ib qho tseem ceeb heev uas yuav tsum paub txog qhov no.
| Cov teebmeem sab nraud | Kev piav qhia thiab yuav ua li cas |
|---|---|
| Cov kev mob tshwm sim loj heev uas yuav tsum tau qhia rau koj tus kws kho mob tam sim ntawd | |
| Cov tsos mob ntawm kev puas tsuaj rau daim siab | Cov zis daj tsaus los yog xim av, qhov muag los yog daim tawv nqaij daj, mob plab sab xis saum toj, tsis xav noj mov, xeev siab, qaug zog txawv txawv. Yog koj pom cov no, qhia rau koj tus kws kho mob tam sim ntawd. |
| Kev ua xua hnyav heev | Tawv nqaij tawm pob, khaus, o ntawm lub ntsej muag, daim di ncauj lossis tus nplaig, ua pa nyuaj. Qhov no yog xwm txheej ceev. |
| Kev hloov pauv ntawm qhov muag pom kev | Qhia txog tej kev hloov pauv rau koj tus kws kho mob , xws li qhov muag dawb ua rau pos huab (cataracts) lossis pom kev tsis meej. |
| Ntshav Qab Zib Qis (Hypoglycemia) | Tsis tswm, tsis meej pem, kiv taub hau, tshaib plab heev, tawm hws ntau dhau, tshee hnyo, thiab lub plawv dhia ceev. |
| Cov kev mob tshwm sim uas feem ntau tsis loj heev, tab sis yuav tsum tau qhia rau tus kws kho mob yog tias lawv tseem muaj | |
| Teeb meem ntawm lub plab zom mov | Mob plab, raws plab, roj. |
| Cov tsos mob feem ntau | Mob taub hau, kiv taub hau, kub taub hau, sinus txhaws. |
| Tshwj xeeb tshaj yog rau cov poj niam | Mob thaum muaj hli. |
Yog koj muaj lwm yam tsos mob txawv txawv uas tsis nyob hauv daim ntawv teev npe no, qhia rau koj tus kws kho mob txog lawv thiab.
Cov Lus Qhia Txog Kev Coj Mus Tsev
- Trikafta yog ib yam tshuaj tseem ceeb heev rau Cystic Fibrosis uas cuam tshuam rau cov hauv paus ntawm tus kab mob.
- Cov tshuaj no yuav tsum noj nrog pluas mov uas muaj roj los yog rog . Tsis txhob noj thaum lub plab khoob.
- Tsis txhob noj cov tshuaj no nrog kua txiv qaub ntsuab. Tsis tas li ntawd, qhia rau koj tus kws kho mob txog lwm yam tshuaj uas koj noj.
- Nrhiav kev kho mob tam sim ntawd yog tias koj muaj cov tsos mob ntawm kev puas tsuaj rau daim siab (qhov muag daj, zis tsaus) lossis kev ua xua hnyav.
- Mus ntsib kws kho mob rau hnub teem tseg thiab tsis txhob nco qhov kev kuaj ntshav thiab qhov muag uas nws sau ntawv kom kuaj.
- Cov tshuaj no tsuas yog rau koj xwb. Tsis txhob muab rau lwm tus.
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