We yu dɔktɔ tɛl yu ɔ di pɔsin we yu lɛk se dɛn gɛt sistik fibrosis (CF), yu go mɔs gɛt bɔku kwɛstyɔn bɔt di mɛrɛsin we dɛn go gi yu. Bikɔs na kɔmpleks sik, i impɔtant fɔ mek dɛn no gud gud wan bɔt di mɛrɛsin we dɛn go gi dɛn. Tide wi go tɔk bɔt wan pan dɛn kayn patikyula mɛrɛsin dɛn de. Na wan kɔmbayn pil we dɛn kɔl ORKAMBI, we na wan kɔmbaynshɔn fɔ tu drɔgs we dɛn kɔl Lumacaftor ɛn Ivacaftor.
Us kayn mɛrɛsin dis? Wetin rili dis de du?
Fɔ tɔk am simpul wan, sistik fibrosis (CF) na wan sik we kin kam bikɔs wan prɔtin nɔ fayn na wi bɔdi. dis kin mek di sekreshכn dεm na wi lכng εn כgan dεm, spεshal mכkus, kin rili tik εn stika. Tink bɔt am, nɔmal wan di mכkus na wi lכng kin rכn sכmtεm, so i kin kכmכt izi. Bɔt di mכkus na pɔsin we gɛt CF kin rili tik, lɛk glu. Dis tik tik mכkus kin stכk na di lכng, we kin mek i at fכ brith, kכf, εn infεkshכn kin gεt infεkshכn bכku tεm.
Lumakaftɔ we de na di wɔl; Dis drɔg we dɛn kɔl Ivacaftor de wok bay we i de go to da fɔlt prɔtin we a bin tɔk bɔt ɛn fiks am to sɔm mak. I tan lɛk se yu de fiks get we dɔn brok. we dis protin bigin fכ wok fayn, di we aw sכl εn wata de muv tru di bכdi in sεl dεm de bεlε. Dɔn da tik tik stika mכkus de kin tan smɔl ɛn i kin bigin fɔ izi fɔ pul am na di lɔng dɛn. Dis kin kɔntrol bɔku pan di sayn dɛm fɔ CF.
Bɔt wan tin we wi fɔ mɛmba na dat dis nɔto mɛrɛsin fɔ sistik fibrosis (CF). Na jɔs tritmɛnt wae de ɛp fɔ kɔntrol de sik ɛn mek layf izi.
Tin dɛn we yu fɔ tɛl yu dɔktɔ bifo yu tek mɛrɛsin
Bifo yu bigin dis mɛrɛsin, i rili impɔtant fɔ tɛl yu dɔktɔ bɔt yu kɔmplit wɛlbɔdi istri. Bikɔs sɔm tin dɛn kin nid spɛshal kia we yu de yuz dis mɛrɛsin. If yu gɛt ɛni wan pan dɛn tin ya, mek shɔ se yu tɛl yu dɔktɔ.
| Wɛlbɔdi kɔndishɔn ɔ chans | Wetin mek yu nid fɔ tɛl di dɔktɔ? |
|---|---|
| Liva sik | Dis mɛrɛsin kin afɛkt di liva. If yu dɔn gɛt prɔblɛm wit yu liva, yu kin nid fɔ ajɔst di doz ɔ yu kin nid fɔ chɛk yu mɔ ɛn mɔ. |
| Kidni sik | I nid bak fɔ wɔri bɔt aw di kidni de wok. |
| Di ay blɔd prɛshɔn | Di mɛrɛsin kin mek yu blɔd prɛshɔn go ɔp mɔ, so i impɔtant fɔ no bɔt dat bak. |
| If yu gɛt bɛlɛ ɔ yu de tray fɔ gɛt bɛlɛ | Yu fɔ rili tɔk to yu dɔktɔ bɔt aw dis mɛrɛsin sef we yu gɛt bɛlɛ. |
| If dɛn de gi di pikin in mama in bɛlɛ | Tɔk to yu dɔktɔ if di mɛrɛsin de pas to di pikin tru in mama in milk ɛn di tin dɛn we i kin du. |
| Alɛji to ɔda mɛrɛsin, it, ɔ day | Dis infɔmeshɔn impɔtant fɔ no if yu gɛt alɛji fɔ dis mɛrɛsin ɔ ɛni wan pan di tin dɛn we de insay am. |
Aw yu kin yuz dis mɛrɛsin?
Dis na di pat we impɔtant pas ɔl. If yu nɔ yuz dis mɛrɛsin kɔrɛkt wan, di rizɔlt kin ridyus.
- Tek wit it we gɛt fat: Dis na di lɔ we impɔtant pas ɔl . Fɔ mek di bɔdi tek dis mɛrɛsin fayn fayn wan, yu fɔ tek am wit it we gɛt fat. Fɔ ɛgzampul, tek am wit sɔntin lɛk eg, bɔta, chiz, pinat, avokado. If yu gi am to smɔl pikin, yu kin gi am wit mama in milk, pauda milk ɔ ful-fat dairy prodakt lɛk yogɔt, chiz.
- Tek am jɔs lɛk aw yu dɔktɔ tɛl yu fɔ tek am: tek di rayt doz, di rayt tɛm. Kɔntinyu fɔ yuz am te yu dɔktɔ tɛl yu fɔ stɔp.
- Nɔ tek wit grep jus: Nɔ drink grep ɔ grep jus we yu de tek dis mɛrɛsin.
- We dɛn gi am to pikin dɛn: Dɛn kin gi dis mɛrɛsin to pikin dɛn we dɔn pas 6 ia. Bɔt yu dɔktɔ go gi yu spɛshal instrɔkshɔn bɔt dis.
Wetin a go du if a tek bɔku mɛrɛsin?
If yu tink se yu dɔn tek mɔ pas di doz we dɛn tɛl yu fɔ tek, kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Kɔlɔmbɔ Nashɔnal Ospital wantɛm wantɛm, ɔ go na di Imejɛnsi Dipatmɛnt (ETU) na di ɔspitul we de nia yu.
Wetin a go du if a fɔgɛt wan doz?
If yu fɔgɛt fɔ tek wan doz, tek am jɔs lɛk aw yu mɛmba. Bɔt if i nɔ rich 6 awa te yu tek di nɛks doz, nɔ tek di doz we yu mis. Skip am ɛn tek di nɛks doz na di tɛm we dɛn dɔn sɛtul. Nɔ ɛva tek tu dos wan tɛm.
Ɔda mɛrɛsin dɛm wae kin miks wit dis mɛrɛsin
Dis na sɔntin we wi fɔ rili tek tɛm wit. ORKAMBI kin intarakt wit bɔku ɔda mɛrɛsin dɛn. Dis min se if yu tek am wit ɔda mɛrɛsin dɛn, i kin chenj di tin dɛn we ORKAMBI kin du, chenj di tin dɛn we ɔda mɛrɛsin kin du, ɔ i kin mek yu gɛt siriɔs sayd ɛfɛkt.
So, yu fɔ tɛl yu dɔktɔ bɔt ɔl di mɛrɛsin dɛn we yu de tek (mɛrɛsin fɔ ɔda sik, vaytamɛn, ɛbul mɛrɛsin, Ayurveda mɛrɛsin, it sɔplɛnt).
Dis dɔŋ ya na jɔs sɔm pan di mɛrɛsin dɛm wae kin miks wit dis mɛrɛsin. Dis list nɔ kɔmplit.
| Nɔ tek dis mɛrɛsin wit ɛni ɔda mɛrɛsin. | |
|---|---|
| Artemɛta, we dɛn kɔl lumefantrine | Ranolazin we dɛn kɔl Ranolazin |
| Lurasidone we gɛt di sik | Sɔm mɛrɛsin dɛn we dɛn kin gi fɔ HIV ɛn Epatitis C vayrɔs |
| Duya tɛl yu dɔktɔ bikɔs dis kin miks wit yu mɛrɛsin. | |
| Sɔm antibayɔtiks (e.g. Klarithromycin, Erythromycin) . | Antifכngal dεm (e.g. Flukonazכl, Kεtokonazכl) . |
| Mεdisin dεm fכ εpilepshכn (fit) (e.g. Carbamazepine, Phenytoin) . | Mɛrɛsin fɔ pwɛl hat ɔr wɔri |
| Imyun suprεshכn dεm (e.g. Sayklosporin, Takrכlimus) . | Di kayn stεroyd dεm (e.g. Prεdnison) . |
| Pils dɛn we dɛn kin yuz fɔ kɔntrol pikin (Estrogen/Progestin hormones) . | Warfarin (wan tin we de mek blɔd tan) . |
| Di mɛrɛsin dɛn we de mek pɔsin fil pen lɛk ibuprofen | Sɛnt Jɔn Wɔt (mɛdisin we dɛn kin yuz fɔ mɛn animal dɛn) . |
Ɔda tin dɛn we yu fɔ tink bɔt we yu de tek di mɛrɛsin
- Fɔ chɛk yu dɔktɔ ɔltɛm: Yu dɔktɔ go tɛl yu fɔ kam na di klinik ɔltɛm. Go di rayt tɛm ɛn mek dɛn du tin dɛn lɛk blɔd tɛst. If yu sik nɔr dɔn go, tɛl dɛm bɔt am.
- Wach yu yay: Dis mɛrɛsin gɛt smɔl risk fɔ mek yu gɛt katarakt, mɔ pan pikin dɛn. So, yu fɔ mek dɔktɔ we de mɛn yu yay chɛk yu yay ɔltɛm we yu de tek di mɛrɛsin. If yu notis ɛni chenj na yu yay, tɛl yu dɔktɔ wantɛm wantɛm.
- Tek tɛm wit bɔn kɔntrol: Dis rili impɔtant if yu de yuz ɔmon bɔn kɔntrol pils. ORKAMBI kin mek dɛn nɔ ebul fɔ wok fayn. So, mek shɔ se yu tɔk to yu dɔktɔ bɔt aw fɔ yuz ɔda we fɔ kɔntrol pikin, lɛk kɔndɔm ɔ dayafragm .
Sayd ɛfɛkt dɛn we kin apin bikɔs ɔf di mɛrɛsin
Lɛk ɛni mɛrɛsin, dis wan kin mek sɔm pipul dɛn gɛt sayd ɛfɛkt. Sɔm dɛn siriɔs, sɔm dɛn nɔ at fɔ ɔndastand.
| Siriɔs sayd ɛfɛkt dɛm we dɛn fɔ ripɔt to di dɔktɔ wantɛm wantɛm | |
|---|---|
| Alɛji we pɔsin kin gɛt | Skin rash, it, swel na di fes, lip, tong ɔ trot. |
| I nɔ izi fɔ blo ɔ i kin mek yu chɛst pen | If yu gɛt prɔblɛm fɔ blo ɔ yu fil se yu chɛst de tayt. |
| Di sayn dɛm we de sho se di liva dɔn pwɛl | Pen na di ɔp rayt say na di bɛlɛ, yu nɔ de want fɔ it, yu nɔ de fil fayn, yu de stɔl we gɛt layt kɔlɔ, yu urine we gɛt dak yɔlɔ ɔ brawn, yu yay ɔ yu skin de yɔlɔ, ɛn yu taya pasmak. |
| Blɔd prɛshɔn we de go ɔp | Di dɔktɔ go chɛk dis. |
| Chenj na di yay we yu de si | If yu vishɔn fil lɛk se yu nɔ de si fayn. |
| Sayd ɛfɛkt dɛn we nɔ kin apin kwik kwik wan, bɔt dɛn fɔ ripɔt to di dɔktɔ if dɛn kɔntinyu fɔ de | |
| Bɛlɛ de at | Gas we dɛn kin yuz |
| Rɔnbɛlɛ | Vɔmit |
| Ed de at | We pɔsin taya |
| Menstrual saykl we nɔ de ɔltɛm na uman dɛn | |
Aw yu kin kip ɛn trowe di mɛrɛsin?
- Fɔ kip di tablɛt dɛn: Kip di tablɛt dɛn usay pikin dɛn ɛn animal dɛn we yu lɛk nɔ go ebul fɔ rich . Stɔr na rum tɛmpracha (bitwin 20-25 digri sɛlshiɔs). Nɔ yuz mɛrɛsin we dɔn pas.
- Aw fɔ trowe am: Di bɛst we fɔ trowe di mɛrɛsin we dɔn pas ɔ we yu nɔ nid igen na fɔ pul di pils dɛn na di kɔntena, miks dɛn wit sɔntin lɛk kɔfi grɔn we dɛn dɔn yuz, dɔti, ɔ pusi dɔti, put dɛn insay bag we dɛn tayt tayt, ɛn trowe dɛn na dɔti. Nɔ flush mɛrɛsin dɛn dɔŋ di tɔylɛt pas yu dɔktɔ tɛl yu fɔ du dat.
Mɛsej we dɛn kin kɛr go na os
- Ɔltɛm tek ORKAMBI (Lumacaftor; Ivacaftor) wit it we gɛt fat lɛk bɔta, chiz, ɔ eg.
- Dis mɛrɛsin na fɔ yu nɔmɔ. Nɔ sheb am wit ɛni ɔda pɔsin.
- Tɛl yu dɔktɔ bɔt ɔl di ɔda mɛrɛsin dɛn, vaytamɛn dɛn, ɛn ɛbul mɛrɛsin dɛn we yu de tek.
- Go to dɔktɔ kwik kwik wan if yu gɛt siriɔs sayd ɛfɛkt lɛk we yu de si chenj, i nɔ izi fɔ blo, ɔ yu bɛlɛ de fil pen na di rayt say we de ɔp.
- Kip yu klinik de ɛn tɛst dɛn we yu dɔn sɛtul wit yu dɔktɔ.
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