Yu dɔktɔ dɔn ɛva tɛl yu ɔ sɔmbɔdi na yu famili se yu gɛt wan sik we de mek yu kidni gɛt sist we ful-ɔp wit wata? dis na mεdikal kכl am ‘Autosomal Dominant Polycystic
kidney disease ’, כ
ADPKD fכ sכt. Na nɔmal tin fɔ fil smɔl frayd we yu yɛri dis, bikɔs as tɛm de go, dis kin mek yu kidni nɔ wok fayn. Bɔt nɔ wɔri. Tritmεnt dεm de wae kin slo dis sik εn εp fכ protεkt yu kidni dεm. Tide wi de tɔk bɔt
Jynarque , di wan ol drɔg we dɛn dɔn gri fɔ fɔ dis kɔndishɔn.
Aw dis drɔg Jynarque de ɛp ADPKD pasɛnt dɛn?
Fɔ tɔk am simpul wan, ADPKD na
wan sik we pɔsin kin gɛt we i kam pan jɛnɛreshɔn to ɔda jɛnɛreshɔn . dis na kכndyushכn we bכku sist dεm we fulכp wit wata (cyst) de fכm na di kidni dεm. As tɛm de go, dɛn sist ya kin gro, ɛn dɛn kin chenj di shep we di kidni dɛn gɛt ɛn dɛn kin big pas aw i kin bi. Afta sɔm tɛm, di kidni dɛn nɔ kin ebul fɔ du dɛn wok fɔ filta blɔd fayn igen. Bɔrku tɛm, dɛn sayn ya nɔr kin apin pan yɔŋ pipul dɛm, bɔt na bitwin 30 ɛn 50 ia. Wan kɔmɔn sayn na
ay blɔd prɛshɔn . Pen na di kidni kin apin bak. Dis kin bi bikɔs ɔf infekshɔn na di kidni ɔ di urinary tract, sist we brok, ɔ kidni ston. Klose to ɔlman wae gɛt ADPKD go dɔn gɛt krɛse sik (CKD). Dis na sik we de wɔs smɔl smɔl. Lɛ wi si wetin na di stej dɛn.
| CKD Stej we dɛn kɔl | Di tin we de apin na simpul tin. |
|---|
| Stej 1 ɛn 2 | Dis na di fɔs tɛm. Di kidni dɛn stil de wok fayn, so bɔku tɛm dɛn nɔ kin gɛt ɛni sayn fɔ si am. |
| Stej 3 ɛn 4 | Bay naw, di kidni dεm we de wok dכn dכn bכku bכku wan. Di sayn dɛm kin bigin fɔ sho bikɔs dɛn nɔ kin ebul fɔ filta di blɔd fayn fayn wan. |
| Stej 5. Di wan we mek | Dis na di las stej. di kidni dεm kin bi komplit inכpεrayshכn (Kidney Failure). If yu nɔ du dayalaysis ɔ yu nɔ transplant yu kidni, i kin mek yu layf de pan denja. |
Di men gol fɔ ADPKD tritmɛnt na
fɔ slo di damej we di kidni dɛn gɛt as i pɔsibul. Wan we fɔ du dis na fɔ kɔntrol yu ay blɔd prɛshɔn. Wan ɔda wan na fɔ drink bɔku wata ɔl di de ɛn nɔ it bɔku kafin (ti, kɔfi). Apat frɔm dat, yu dɔktɔ kin tɛl yu fɔ chenj di we aw yu de liv yu layf lɛk fɔ du ɛksɛsayz, fɔ ridyus sɔl we yu de it, ɛn fɔ lɛf fɔ smok.
Jynarque de wok insay wan we we rili spɛshal. wi bכdi gεt wan כmon we dεn kכl `(vasopressin)`. pan ADPKD sik pipul dεm, dis כmon de sεnd signal to di kidni dεm fכ `mek mכr sist.` di aktv ingridiεnt na Jynarque, `(tolvaptan),` de blכk da signal de fכ rich di kidni dεm. dis de ridyus di fכmeshכn fכ nyu sist dεm εn di growth fכ ol sist dεm. Dis kin mek di kidni dɛn wok fayn fayn wan fɔ lɔng tɛm.
Dis mɛrɛsin nɔ fayn fɔ ɔlman?
Yɛs, Jynarque nɔ fayn fɔ ɔl di sik pipul dɛn.
I impɔtant fɔ tɛl yu dɔktɔ bɔt ɔl di sik dɛn we yu bin gɛt trade ɛn di tin dɛn we yu bin dɔn gɛt naw , mɔ:
- If yu gɛt ɛni prɔblɛm wit yu liva.
- If yu gɛt smɔl ɔ ay sodium lɛvɛl na yu blɔd.
- If yu gɛt ɛni prɔblɛm fɔ pis (e.g. kidni ston , urinary tract obstruction).
- If yu nɔr de fil tɔsti ɔr gɛt prɔblɛm fɔ drink wata ɔl di de.
Fɔ tɔk to yu dɔktɔ bɔt tin dɛn lɛk dis rili impɔtant fɔ yu sef.
Aw fɔ yuz di mɛrɛsin?
Jynarque na wan pil we dɛn kin tek tu tɛm insay di de. Yu kin tek am bifo ɔ afta yu it. Di tɛm fɔ tek dis rili impɔtant.
| Doz we dɛn kin yuz | Taym we dɛn tek |
|---|
| Fɔs doz (mɔnin) . | Tek am jɔs afta yu wek na mɔnin. Dis na di doz we pas ɔl. |
| Sɛkɔn doz (aftanun) . | Tek di fɔs doz ɛksaktɔli 8 awa afta di las doz. (Fɔ ɛgzampul, if yu tek am 8 oklɔk mɔnin, tek di nɛks wan 4 oklɔk na nɛt). Dis na smɔl doz. |
We yu bigin fɔ tek di mɛrɛsin, yu dɔktɔ go gi yu smɔl doz. If yu nɔr gɛt ɛni big prɔblɛm fɔ 1-2 wik, dɛn go inkrisayz di doz smɔl. Afta dat, if yu stil nɔ gɛt ɛni prɔblɛm, yu kin inkrisayz di doz bak.
I rili impɔtant: We yu de tek dis mɛrɛsin, yu dɔktɔ go aks yu fɔ du blɔd tɛst (Liver function tests) ɔltɛm fɔ chɛk aw yu liva de wok . I impɔtant fɔ mek yu atɛnd dɛn tɛst dɛn ya di de dɛn we dɛn dɔn plan fɔ du. Dipen pan di rizɔlt, yu kin nid fɔ ridyus yu doz, stɔp fɔ sɔm dez, ɔ stɔp ɔl.
If yu mis wan doz, nɔ tek am.
Skip di doz we yu mis ɛn tek yu nɛks doz na di tɛm we yu dɔn sɛtul. I impɔtant fɔ fala di schedule ɛksaktɔli, jɔs lɛk aw yu wek na mɔnin ɛn 8 awa afta dat. I fayn fɔ mek yu sɛt alam na yu fon fɔ mɛmba di sɛkɔn doz.
Wetin di tɛst dɛn se bɔt aw dis mɛrɛsin dɔn wok fayn?
Dɛn dɔn du tu big stɔdi fɔ chɛk if di mɛrɛsin we dɛn kɔl Jynarque sef ɛn if i wok fayn.
Di wan dɛn we gɛt CKD we dɔn bigin (stej 1 ɔ 2) .
Insay dis stεdi, di rεt we di kidni big pan di wan dεm we tek Jynarque bin ridyus bכku we yu kכmpεr wit di wan dεm we tek plasεbo. Fɔ bi prɛsis, di rit we di kidni big pan di wan dɛn we tek Jynarque
bin ridyus bay lɛk 49% we yu kɔmpia am wit di wan dɛn we tek plasɛbo. Dis min se di damej we di kidni dɛn bin gɛt bin rili kɔntrol. Apat frɔm dat, di wan dɛn we tek Jynarque nɔ bin gɛt bɛtɛ pen bak we gɛt fɔ du wit dɛn kidni.
Let-stej CKD pasɛnt dɛn (stej 3 ɔ 4) .
Insay dis grup fɔ di sik pipul dɛn, di rit we di kidni wok bin de pwɛl pan di wan dɛn we tek Jynarque bin slo smɔl pas ɔda pipul dɛn. Dis min se dis mɛrɛsin kin ɛp fɔ mek dɛn kidni nɔ wok fɔ sɔm tɛm mɔ, ivin pan di wan dɛn we dɛn sik dɔn rili bad.
Sayd ɛfɛkt ɛn aw fɔ mɛn dɛn?
Sɔm sayd ɛfɛkt dɛn de we yu kin gɛt we yu de yuz Jynarque, ɛn i impɔtant fɔ no bɔt dɛn.
- Fɔ pis ɔltɛm: Dis na di sayd ɛfɛkt we kin apin mɔ. Dis kin mek yu nid fɔ go na tɔylɛt bɔku tɛm, insay di de ɛn na nɛt. Fɔ mek yu nɔ fil fayn na nɛt, tek di sɛkɔn doz di sem tɛm, nɔto leta ivintɛm.
- Di wata we nɔ de na di bɔdi: Risk de fɔ mek di bɔdi nɔ gɛt wata bikɔs di bɔdi de lɔs bɔku wata. Fɔ mek dis nɔ apin, drink bɔku wata ɔl di de, ɛn nɔ wet te yu fil tɔsti . Drink wata wantɛm wantɛm we yu fil tɔsti. If yu nɔ gɛt wata na yu blɔd, dat kin mek yu gɛt bɔku sodium na di blɔd. If yu gɛt sɔm sayn dɛn lɛk fɔ tɔn yu ed, yu wik , yu taya pasmak, yu de fɔdɔm, ɔ yu at nɔ de bit ɔltɛm , tɛl yu dɔktɔ wantɛm wantɛm.
Nɔto dɛn tin ya nɔmɔ, bɔt ɔda bad bad tin dɛn kin apin bak. Tɔk to yu dɔktɔ bɔt ɛni sayn we de mɔna yu.
Prɔblɛm kin de wit ɔda mɛrɛsin ɔ it dɛn?
Yɛs, dis na tin bak we rili impɔtant.
- Ɔda mɛrɛsin dɛm: Jynarque kin intarakt wit sɔm ɔda mɛrɛsin dɛm. Sɔm mɛrɛsin dɛn kin mek di sayd ɛfɛkt dɛn we Jynarque gɛt, ɛn ɔda wan dɛn kin mek di Jynarque nɔ wok fayn. So, mek shɔ se yu tɛl yu dɔktɔ bɔt ɔl di mɛrɛsin dɛn we yu de tek (inklud vaytamɛn ɛn ɛbul mɛrɛsin dɛn).
- Fɔ it: Nɔ it grep ɔ drink grep jus we yu de tek dis mɛrɛsin. Grep de mek di lɛvɛl we Jynarque de na di bɔdi go ɔp, we de mek di risk fɔ gɛt sayd ɛfɛkt go ɔp. Dis ifɛkt kin apin ivin if yu it grep ɛni ɔda tɛm pan di de, nɔto we yu de tek di mɛrɛsin, so nɔ it grep ɔltogɛda.
Yu tink se spɛshal we de fɔ gɛt dis mɛrɛsin?
Jynarque na wan drɔg wae nɔr kin bɔrku fɔ mek yu liva pwɛl. Bikɔs ɔf dis risk, dis mɛrɛsin de ɔnda
wan spɛshal program nɔmɔ we dɛn kɔl REMS Program . Yu fɔ inrɔl pan dis program bifo yu bigin fɔ tek di drɔg. Yu go nid bak fɔ du blɔd tɛst fɔ chɛk aw yu liva de wok. Yu go nid fɔ kɔntinyu fɔ du dɛn blɔd tɛst ya ɔltɛm afta yu dɔn bigin fɔ tek di mɛrɛsin. I impɔtant fɔ mek yu kɔntinyu fɔ tek dɛn tɛst ya if yu want fɔ kɔntinyu fɔ tek di mɛrɛsin. Yu dɔktɔ go ɛksplen mɔ bɔt dis.
Mɛsej we dɛn kin kɛr go na os
- ADPKD na wan sik we pɔsin kin gɛt frɔm in mama ɛn papa we kin mek di kidni ston, we kin mek di kidni nɔ wok fayn.
- Jynarque (Tolvaptan) na spɛshal mɛrɛsin we de ɛp fɔ mek dɛn kidni tɔŋ ya gro sloslo.
- Dis mɛrɛsin nɔ fayn fɔ ɔlman. Tɛl yu dɔktɔ bɔt ɔl yu mɛrɛsin sik.
- Tek di mɛrɛsin di rayt tɛm, insay di rayt doz. Nɔ skip blɔd tɛst fɔ chɛk aw yu liva de wok.
- Drink bɔku wata ɔl di de. Nɔ it ɛn drink grep atɔl.
- Ivin if yu nɔ fil ɛni difrɛns, nɔ stɔp dis mɛrɛsin ɔ ɛni ɔda mɛrɛsin we yu nɔ gɛt yu dɔktɔ in advays.
Jynarque, Tolvaptan, ADPKD, Polisistik Kidni Disiz, Kidni Disiz, Kidni Sist, CKD, Kidni Failure, Kronik Kidni Disiz, Jambola
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