Une chirwere cheitsvo chinonzi polycystic (PCK) here? Ngatikurukurei nezvazvo!

Wakambonzwa nezvechirwere apo mabhegi madiki, azere nemvura anoumbwa mukati meitsvo here? Pamwe mumwe munhu mumhuri mako anacho, kana kuti wakambonzwa nezvacho kune imwe nzvimbo. Ichi ndicho chatinodaidza kuti Polycystic Kidney Disease (PKD) . Zita racho ringanzwika serinotyisa zvishoma, asi kuziva zvakawanda nezvacho kunogona kuita musoro. Saka, ngatitaurei nezvePKD zvakadzama nhasi.

Chii chinonzi PKD? Zvichitaurwa zviri nyore...

Zvichitaurwa zviri nyore, chirwere chePolycystic Kidney Disease (PKD) chirwere chinoita kuti utange ma cysts akawanda azere nemvura, akafanana nema blisters madiki, mukati meitsvo dzako . Idambudziko remajini . Izvi zvinoreva kuti unofanira kunge uine gene rakachinja mumuviri wako kuti rikure. Izvi zvakasiyana zvikuru nema cysts eitsvo, anowanzo umbwa paitsvo dzako chete uye kazhinji haakuvadzi.

Ma cysts aya anoumbwa nekuda kwePKD anogona kukura zvishoma nezvishoma uye kukura itsvo dzese dziri mbiri. Fungidzira, dzimwe nguva ma cysts aya anogona kuwedzera huremu hweitsvo kusvika pamapaundi makumi matatu (anenge makirogiramu 13.5)! Zvadaro, itsvo dzedu hadzichakwanise kuita basa radzo guru rekusefa tsvina kubva muropa. Nekufamba kwenguva, chirwere ichi chinogona kukura kuita Chronic Kidney Disease , iyo inogona kupedzisira yaita kuti itsvo dzisashande zvakanaka . Kutaura zvazviri, PKD ndiyo inokonzera inenge 2% yekutadza kushanda zvakanaka kweitsvo muUnited States. Vanhu vazhinji vane PKD vachada dialysis kana kuisirwa itsvo pane imwe nguva muhupenyu hwavo.

Saka, kana chiremba akakuongorora kuti une PKD, chinhu chakakosha hakusi kutya asi kushanda naye kugadzira hurongwa hwakanaka hwekurapa matambudziko angangokonzerwa nechirwere ichi.

Ndedzipi mhando huru dzePKD?

Kune mhando mbiri huru dzePKD. Ngatidzidzei zvishoma nezvadzo.

1. Autosomal Dominant Polycystic Kidney Disease (ADPKD)

Iyi ndiyo mhando yePKD inonyanya kuzivikanwa. Inowanzoonekwa kana munhu akura, ari pakati pemakore makumi matatu nemakumi mashanu. Zvisinei, dzimwe nguva inogona kuonekwa pahudiki kana kuyaruka. Kuti uve nerudzi urwu rwePKD, mumwe wevabereki vako anofanira kunge aine gene mutation. Vanhu vane ADPKD vane gene mutation iyi mumajini anonzi `PKD1` kana `PKD2`.

2. Chirwere cheItsvo cheAutosomal Recessive Polycystic (ARPKD)

Rudzi urwu rusingawanzoitiki. Runonziwo chirwere chevacheche chinonzi infantile PKD . Chinoitika mwana achiri mudumbu, kureva kuti, panguva yekukura kwemwana ari mudumbu., itsvo hadzikure zvakanaka. Vanachiremba vanowanzoona izvi panguva yekuongorora mwana asati aberekwa panguva yekuzvitakura kana mushure mekuzvarwa kwemwana. Kuti mwana awane rudzi urwu rweARPKD, vabereki vese vanofanira kunge vaine gene mutation inonzi `PKHD1`, uye mwana anofanira kugara nhaka gene kubva kwavari vese.

PKD yakajairika zvakadii?

Nhamba dzinoratidza kuti kune varwere vanosvika 500,000 (500,000) vane PKD muUnited States chete.

Rudzi rwechirwere rwatakambotaura nezvarwo, ADPKD, rwakajairika kupfuura ARPKD. Vanhu vanosvika 90% vane PKD vane ADPKD. ARPKD chirwere chisingawanzoitiki. Chinobata munhu mumwe chete pavanhu 25,000.

Ndezvipi zviratidzo zvinowanzoonekwa zvePKD?

Zviratidzo zvinogona kusiyana zvichienderana nerudzi rwePKD yaunayo.

Zviratidzo zveADPKD

Vanhu vane ADPKD, rudzi rwakajairika, vanogona kusava nezviratidzo kusvika vakura. Dzimwe nguva, ma cysts anoumbwa muitsvo anogona kusaonekwa kusvika akura zvikuru. Kana zviratidzo zvikaonekwa, zvinogona kusanganisira:

• Kurwadziwa kumusana kana parutivi (kunonziwo "kurwadziwa kwemusana")
• Kukwira kweropa
• Musoro unowanzo rwadza
• Ropa muweti (Hematuria)
• Utachiona hwemunzira weti hunowanzoitika (UTIs)
• Matombo eitsvo

Zviratidzo zveARPKD

Vacheche vane ARPKD, iyo isingawanzoitiki, vanogona kuratidza zviratidzo pakuzvarwa kana pahudiki. Dzimwe nguva, chiremba anogona kuona ma cysts muitsvo dzemwana ari mudumbu panguva yekuongorora ultrasound kwemwana asati aberekwa.

Kana mwana achangoberekwa aine ARPKD, anogona kuona zviratidzo zvakaita se:

• Kuberekwa kwakaderera
• Dumbu rakazvimba
• Kuva neBP yakakwira pakuzvarwa
• Kuoma kufema

Kana uine ARPKD muhudiki, unogona kuona zviratidzo zvakaita se:

• Kukundikana kukura (izvi zvinonzi "Kukundikana kukura")
• Utachiona hwemunzira weti hunowanzoitika (UTIs)
• Kukwira kweropa
• Kurwadziwa mudumbu kana pasi pemusana

Kana ARPKD iri mumwana ari mudumbu, scan inogona kuratidza zvinotevera:

• Itsvo dzakakura kupfuura dzakajairwa
• Mwero wemvura yeamniotic yakaderera

Zviratidzo zvePKD zvinoonekwa nekukurumidza nguva dzose here?

Kwete, hazvina kudaro. Chirwere ichi chinowanzo nyaradzwa kana munhu achitaura nezvechirwere, chisina zviratidzo . Izvi zvinoreva kuti chirwere ichi chinogona kukura mumuviri pasina zviratidzo zvekunze. Fungidzira, inenge hafu yevanhu vane chirwere ichi vangasatomboziva kuti vanacho muhupenyu hwavo hwese. Zviratidzo zvinowanzoonekwa mushure mekunge maronda ane mvura (cysts) akura.

Chii chinokonzera chirwere chePKD?

Sezvatakambotaura, chikonzero chikuru chePKD ikuchinja kwemajini . Unoziva kuti majini akafanana nematombo makuru emuviri wedu. Tinowana majini aya kubva kuvabereki vedu. Majini aya anosarudza kuti muviri wedu unofanira kukura sei uye kushanda sei. Dzimwe nguva, panguva yekukura kwemwana, jini iri rinochinja-chinja uye harikodzeri kutevedzera zvakanaka. Kana uine kuchinja kwemajini kwakadaro, kunogonawo kupfuudzwa kuvana vako. PKD inowanzokura nenzira iyi.

Zvisinei, kashoma, kunyangwe vabereki vese vasina jini iri, chirwere ichi chinogona kukura nekuda kwekushanduka-shanduka kwejini racho.

Ndezvipi zvinhu zvinokonzera njodzi yechirwere ichi?

Nekuti chirwere chePKD chinokonzerwa nemajini, chinhu chikuru chinoita kuti uve nechirwere ichi inhoroondo yemhuri. Kureva kuti, mumwe wevabereki vako ane chirwere ichi (kunyanya kana chiri cheADPKD) kana kuti vabereki vese vane chirwere ichi (kana chiri cheARPKD).

Ndezvipi zvinetso zvinogona kuitika nekuda kwePKD?

Chirwere chePKD chinogona kukonzera matambudziko makuru ehutano kuvanhu vakuru nevacheche. Dzimwe nguva zvatinoona sezviratidzo zvePKD zvinogona kuva matambudziko chaiwo. Semuenzaniso:

• Matombo eitsvo
• Kukwira kweropa
• Utachiona hwemunzira yeweti (UTIs)

Pamusoro pezvo, chirwere chePKD chinogona kukonzera mamwe matambudziko akakomba, akadai se:

• Mitsipa yeropa inoputika muuropi (inonzi ``Brain aneurysms'')
• Matambudziko ematumbu makuru, semuenzaniso, diverticulitis, chirwere apo tubhegi tudiki tunoumbwa mutumbu guru uye tunotapukirwa.
• Matambudziko evharuvhu yemoyo
• Kukundikana kweitsvo
• Zvirwere zvechiropa uye pancreatic cysts
• Kukwira kweropa panguva yekuzvitakura (kunonzi "Preeclampsia")

Izvi zvinogona kuuraya vacheche vane ARPKD yakanyanya. Mwedzi wekutanga wehupenyu wakakosha zvikuru kuvana vanozvarwa vane ARPKD, sezvo vachigona kutadza kufema zvakanaka uye itsvo dzichitadza kushanda zvakanaka panguva iyoyo.

PKD inoonekwa sei?

Chiremba wezvirwere zveitsvo (chiremba anonyanya kubata chirwere cheitsvo) anowanzoita basa guru mukuongorora nekurapa PKD. Achanyatsoongorora zviratidzo zvako nenhoroondo yemhuri yako, uye anogona kuraira kuongororwa kwemifananidzo kuti itsvo dzako dziongororwe, zvakaita se:

• Ultrasound yeitsvo: Iyi ndiyo nzira inonyanya kushandiswa uye isingarwadzi.
• Ultrasound yemwana asati aberekwa: Izvi zvinobatsira kuona kana mwana ari mudumbu aine PKD.
• Kuongororwa kweCT (computed tomography scan): Izvi zvinogona kuburitsa mifananidzo yakajeka yeitsvo nedundira.
• MRI (magnetic resonance imaging): Izvi zvinobatsirawo kuwana mifananidzo yakadzama yeitsvo.

Pamusoro pezvo, chirembaKuongororwa kwemajini kunogonawo kukurudzirwa. Kuongororwa uku kunogona kutarisa kuvapo kwejini rakachinja rinokonzera PKD muropa kana mumate sample. Izvi zvinogonawo kusimbisa kuti une rudzii rwePKD.

Ndezvipi zvinorapwa zvePKD?

Kutaura zvazviri, hapasati pava nemushonga wePKD. Kurapa kwacho kwakanangana nekunonotsa kufambira mberi kwechirwere, kudzora zviratidzo, uye kudzivirira matambudziko. Mishonga mikuru yePKD ndeiyi:

• Kutarisira BP: Kukwira kweBP muvengi mukuru wePKD. Saka chiremba wako achakubatsira kudzora BP yako nemishonga, kudya zvine hutano munyu mushoma, uye kurovedza muviri. Kuchengetedza BP yako iri padanho rakachengeteka kunogona kuderedza njodzi yako yekurwara nezvirwere zvakakomba zvakaita sechirwere chemwoyo nestroke.
• Rutsigiro rwekufema: Vacheche vane ARPKD, vane mapapu asati anyatsokura, uye vanonetseka kufema vangangoda kutsigirwa nemuchina wekufema .
• Dialysis: Kana itsvo dzako dzichitadza kushanda zvakanaka uye dzisingachakwanisi kuita basa radzo, ungangoda kuitwa "Dialysis" (nzira yekuchenesa ropa rako). Mukuita uku, muchina unonzi "Hemodialysis" unosefa ropa rako kunze kwemuviri wako. Mu "Peritoneal dialysis" unosefa ropa rako uchishandisa mvura chaiyo uye membrane inonzi peritoneum iri mudumbu mako.
• Kurapa Kukura: Vacheche vane ARPKD vane huremu hushoma uye vane kukura kwakaderera vangada rubatsiro pakukura. Chiremba anogona kukurudzira kurapwa kwekudya kwakakosha kana kuti human growth hormone .
• Kuisirwa itsvo: Kana ADPKD ikaenderera mberi nekukundikana kweitsvo , ungangoda kuisirwa itsvo . Kuisirwa itsvo inzira yekuvhiya umo itsvo isina kushanda inobviswa yotsiviwa neitsvo ine hutano kubva kune anopa.
• Kudzora marwadzo: Mishonga inogona kushandiswa kudzora marwadzo anokonzerwa nehutachiona, matombo eitsvo, kana ma cysts anoputika nekuda kwePKD. Zvisinei, chero mishonga inoderedza marwadzo yaunotora inofanira kubvumidzwa nachiremba wako . Mimwe mishonga inoderedza marwadzo (kunyanya NSAIDs) inogona kuwedzera kukuvara kweitsvo.

Munhu ane PKD anotarisirwa kurarama hupenyu hwakadii?

Unganzwa kutya zvishoma paunonzwa izvi, asi zvakakosha kuziva chokwadi.

Kana vanhu vane ADPKD vakagamuchira kurapwa kwakakodzera, vakabata chirwere ichi zvakanaka, uye vakatevedzera mararamiro ane hutano,Unogona kurarama hupenyu hurefu uye hwakazara. Vanhu vanenge hafu yeADPKD vanozotadza kushanda zvakanaka panosvika makore makumi manomwe uye vachada dialysis kana kuisirwa itsvo .

Asi fungidziro yekuti vana vane ARPKD vacharwara nechirwere ichi haisi yakanaka. Chikamu chimwe muzvitatu chevana vanoberekwa neARPKD, kunyanya avo vane matambudziko makuru ekufema, vanofa vachiri vacheche. Vacheche vanorarama vanowanzoda kurapwa uye kutarisirwa kwakakosha muhupenyu hwavo hwese. Vanenge hafu yevana vanorarama mushure mekuzvarwa vanotambura nekutadza kushanda kweitsvo pakati pemakore gumi nemashanu kusvika makumi maviri.

PKD inogona kudzivirirwa here?

Zvinosuwisa kuti chirwere chePKD chirwere chinokonzerwa nemajini, saka hachigone kudzivirirwa zvachose . Zvisinei, nekutevera mararamiro ane hutano, kudzora BP, uye kutevedzera mazano echiremba nokungwarira, unogona kuderedza kufambira mberi kwechirwere kana kunonotsa kukura kwezvinetso zvakaita sekutadza kushanda kweitsvo.

Zvakakosha zvikuru kuti vanhu vane PKD vari kuronga kuva nevana vataure nachiremba wezvemajini kuitira kuti vagoziviswa nezvenjodzi yekuti vana vavo vagare nhaka chirwere ichi uye matanho angatorwa kudzivirira chirwere ichi.

Ndingaitei kuti ndive nyore kurarama nePKD?

Kurarama nechirwere chepfungwa (PKD) kunogona kuoma, asi nekutevera mararamiro ane hutano uye kuziva nezvechirwere ichi, unogona kuita kuti rwendo ruve nyore. Heano mamwe mazano ekukubatsira:

• Idya chikafu chinobatsira itsvo . Izvi zvinofanira kutarisa pane zvekudya zvine munyu mushoma, potassium, uye phosphorus. Tsvaga mazano chaiwo kubva kuna chiremba wako kana nyanzvi yezvekudya nezvenyaya iyi.
• Ita maekisesaizi anokunakira, angangoita maminetsi makumi matatu pazuva, mazuva mazhinji evhiki.
• Ramba uine huremu hwakanaka hwemuviri.
• Tarisa BP yako nguva nenguva uye dzora BP yako zvichienderana nemirairo yachiremba wako.
• Kana ukasvuta kana kushandisa zvimwe zvigadzirwa zvefodya, rega ipapo ipapo.
• Dzivisa zvinwiwa zvinodhaka zvakanyanya sezvinobvira.
• Tsvaga nzira dzekuderedza kushushikana. Zvinhu zvakaita sekufungisisa neyoga zvinogona kubatsira.
• Inwa mvura yakawanda nezvinwiwa zvisina caffeine (tii shoma, kofi shoma) mukati mezuva rose. Zvisinei, kana uchida kuderedza mvura panguva ipi zvayo yechirwere cheitsvo, tevera zano rachiremba wako.
• Rara zvakanaka kwemaawa manomwe kana kupfuura husiku hwega hwega.
• Inwa mishonga yese yawakanyorerwa nachiremba wako panguva chaiyo, uye muchiyero chawakanyorerwa. Usarega kutora chero mushonga usina kurairwa nachiremba.

Unofanira kuona chiremba rini nezvePKD?

Kana uine chirwere chePKD, unofanira kunge watove pasi pekutarisirwa nachiremba. Zvisinei, kana ukangoerekana waona chimwe chezviratidzo izvi , enda kuna chiremba kana kuenda kuchipatara nekukasika :

• Kana makumbo ako, zvitsitsinho, kana tsoka zvikazvimba kamwe kamwe (izvi zvinonzi kuzvimba)
• Kana uine kurwadziwa kwakanyanya pachipfuva kana kunzwa kubatwa muchipfuva chako
• Kana uchingoerekana waomerwa nekufema
• Kana usingakwanise kuita weti
• Kana weti ikabuda ropa rakawanda
• Kana uchinzwa musoro wakanyanya kana kuchinja maonero ako

Mibvunzo ipi yandinofanira kubvunza chiremba wangu?

Zvakajairika kuva nemibvunzo yakawanda nezvechirwere ichi. Usatya kubvunza chiremba wako mibvunzo yakaita seiyi:

• Ndine rudzii rwePKD? (ADPKD kana ARPKD?)
• Ndeipi njodzi yekuti vana vangu vagare nhaka chirwere ichi kubva kwandiri?
• Ndinofanira kuita mimwe miedzo yakakosha here?
• Ndeipi nzira yekurapa yakanakira ini?
• Ndezvipi zvandinofanira kuchinja pakudya kwangu, kunyanya maererano nemunyu, potassium, uye phosphorus?
• Ndinofanira kuchinja mararamiro angu here (kurovedza muviri, kurara, nezvimwewo)?
• Ndingada dialysis here kana kuti kuisirwa itsvo mune ramangwana?
• Ndezvipi migumisiro kana matambudziko andinofanira kunyanya kuziva?
• Ndezvipi migumisiro yemishonga yandinoshandisa?

Pakupedzisira, zvekurangarira (Mharidzo Yekuenda Kumba)

Iye zvino wava kuziva kuti chirwere chePolycystic Kidney Disease (PKD) chirwere chinokonzerwa nemajini chinoita kuti ma cysts aumbe muitsvo. Ma cysts aya anogona kukonzera kuti itsvo dzikure uye dzisashande zvakanaka. Kazhinji kacho inobata vanhu vakuru, asi kashoma kuti PKD iite seine njodzi muvana vacheche.

Kunyange hazvo pasina mushonga wePKD, usazvidya mwoyo. Nekugadzirisa zviratidzo zvako nemazvo, kutevedzera zano rachiremba wako, uye kurarama hupenyu hune hutano, unogona kurarama zvakanaka nechirwere chacho. Chinhu chakakosha ndechekushanda pamwe chete nachiremba wako uye kuwana bvunzo nekurapwa kwaunoda. Hausi wega, uye kune vanachiremba, mhuri, neshamwari vanogona kukubatsira parwendo urwu.

` Chirwere cheItsvo chePolycystic, PKD, chirwere cheItsvo, maCysts eItsvo, zvirwere zvemajini, ADPKD, ARPKD