ICystic Fibrosis kunye nokukhulelwa

Umxholo

• Iziphumo zokukhulelwa
• Ukuvavanya ngexesha lokukhulelwa
• Iingcebiso zokuphila
• Yitya ngokufanelekileyo
• Zilolonge
• Ezinye iingcebiso zokuqinisekisa ukukhulelwa okusempilweni
• Amayeza okuphepha ngelixa ukhulelwe
• Iingcebiso zokukhulelwa nge-cystic fibrosis
• Yise kude

Xa une-cystic fibrosis, kusenokwenzeka ukuba ukhulelwe kwaye uphathe umntwana okwexeshana. Nangona kunjalo, kuyakufuneka ujongwe ngeliso elibukhali kwezi nyanga zilithoba ukuze uqinisekise ukuba wena kunye nosana lwakho nihlala niphilile.

Ukuze uzinike elona thuba lifanelekileyo lokufezekisa ukukhulelwa okunempumelelo, jonga ugqirha wezokubelekisa ngaphambi kokuba uzame ukukhulelwa.

Le ngcali iya:

• vavanya impilo yakho
• misela ukuba kukhuselekile na ukuba ukhulelwe
• kukukhokela ngexesha lokukhulelwa

Uyakusebenza ngokusondeleyo kunye ne-pulmonologist ephatha i-cystic fibrosis yakho ngexesha lokukhulelwa kwakho.

Nanku umboniso wento onokuyilindela njengoko uqala ukucwangcisa usapho.

Iziphumo zokukhulelwa

Ngexesha lokukhulelwa, iimpawu zakho ze-cystic fibrosis zinokuya zisiba mandundu. Usana olukhulayo lunokubeka uxinzelelo kwimiphunga yakho kwaye lwenze kube nzima ukuphefumla. Ukuqhinwa kuqhelekile nakwabasetyhini abane-cystic fibrosis.

Ezinye iingxaki zokukhulelwa kwe-cystic fibrosis zibandakanya:

• Ukuhanjiswa kwangaphambi kwexesha. Yilapho umntwana wakho ezalwa ngaphambi kweveki yama-37 yokukhulelwa. Iintsana ezizalwa kwangethuba zisemngciphekweni wokuba neengxaki ezifana nokuphefumla nzima kunye nosulelo.
• Isifo seswekile. Ngeli xesha ke xa umama eneswekile ephezulu yegazi ngexesha lokukhulelwa. Isifo seswekile singazonakalisa izitho ezifana nezintso namehlo. Inokubangela iingxaki kusana olusakhulayo.
• Uxinzelelo lwegazi (uxinzelelo lwegazi). Oku kukonyuka kokunganyangeki ngenxa yemithambo yegazi eqinileyo. Xa uxinzelelo lwegazi luphezulu ngexesha lokukhulelwa, lunokunciphisa ukuhamba kwegazi kusana lwakho, lucothise ukukhula kosana lwakho, kwaye lukhokelele ekuhanjisweni ngaphambi kwexesha.
• Ukusilela kwesondlo. Oku kunokuthintela ukuba umntwana wakho akhule ngokwaneleyo esibelekweni.

Ukuvavanya ngexesha lokukhulelwa

Kukho ithuba lokuba ungadlulisela i-cystic fibrosis emntwaneni wakho. Ukuze oko kwenzeke, iqabane lakho likwafuna ukuphatha uhlobo olungaqhelekanga. Iqabane lakho linokufumana uvavanyo lwegazi okanye lwamathe ngaphambi kokuba ukhulelwe ukujonga imeko yakhe.

Ngexesha lokukhulelwa, ezi mvavanyo zimbini zaphambi kokubeleka zikhangela ezona zinto zixhaphakileyo kwimfuza. Banokubonisa ukuba ngaba umntwana wakho unokuba ne-cystic fibrosis okanye uphethe olunye lophononongo lofuzo olwaziwayo olubangela i-cystic fibrosis:

• Isampulu ye-chorionic villus (i-CVS) yenziwa phakathi kwe-10 neye-13 iiveki zokukhulelwa. Ugqirha wakho uya kufaka inaliti ende, ebhityileyo esiswini sakho kwaye uya kususa isampulu yethishyu yokuvavanya. Ngenye indlela, ugqirha unokuthatha isampulu usebenzisa ityhubhu ebhityileyo efakwe kumlomo wesibeleko kunye nokutsala kakuhle.
• I-Amniocentesis yenziwa phakathi kwe-15 neye-20 iiveki zokukhulelwa kwakho. Ugqirha ufaka inaliti encinci, engenanto esiswini sakho kwaye ususe isampulu ye-amniotic fluid ejikeleze usana lwakho. Ilebhu ke ivavanya ulwelo lwecystic fibrosis.

Oluvavanyo langaphambi kokubeleka lunokuxabisa amawaka ambalwa eedola, kuxhomekeke kwindawo obenze kuyo. Uninzi lwezicwangciso zeinshurensi yezempilo ziya kugubungela indleko yabasetyhini abangaphezulu kweminyaka engama-35 kunye nabasetyhini abanomngcipheko owaziwayo.

Nje ukuba wazi ukuba umntwana wakho une-cystic fibrosis, unokwenza izigqibo malunga nexesha elizayo lokukhulelwa kwakho.

Iingcebiso zokuphila

Ukucwangciswa okuncinci kunye nokhathalelo olongezelelekileyo ngexesha lokukhulelwa kwakho kuya kunceda ekuqinisekiseni esona siphumo silungileyo sobabini nosana lwakho. Nazi izinto ezimbalwa onokuzenza.

Yitya ngokufanelekileyo

ICystic fibrosis yenza kube nzima ukufumana isondlo esifanelekileyo ngexesha lokukhulelwa. Xa usitya ezimbini, kubaluleke ngakumbi ukuba ufumane iikhalori ezaneleyo kunye nezondlo.

Ugqirha wakho unokucebisa ukuba uqalise ukukhulelwa kwakho ngesalathiso sobunzima bomzimba (BMI) ubuncinci be-22. Ukuba i-BMI yakho iphantsi kunoko, unokufuna ukwandisa ikhalori yakho ngaphambi kokuba ukhulelwe.

Nje ukuba ukhulelwe, uyakufuna iikhalori ezingama-300 ezongezelelweyo yonke imihla. Ukuba awukwazi ukufikelela kwelo nani ngokutya wedwa, sela izongezo zesondlo.

Ngamanye amaxesha ukugula kwasekuseni okuqatha okanye i-cystic fibrosis inokukuthintela ekufumaneni iikhalori ezaneleyo ukuhlangabezana neemfuno zomntwana wakho. Kule meko, ugqirha wakho unokucebisa ukuba ufumane isondlo sakho ngaphakathi. Oku kubizwa ngokuba sisondlo sabazali.

Nazi ezinye iingcebiso ezimbalwa zokondla ekufuneka zilandelwe xa ukhulelwe:

• Sela amanzi amaninzi, yitya iziqhamo kunye nemifuno, kwaye yongeza ifayibha kukutya kwakho ukunqanda ukuqhina.
• Qiniseka ukuba ufumana i-folic acid eyaneleyo, isinyithi, kunye nevithamini D. Ezi zondlo zibalulekile ekukhuleni komntwana wakho. Ngamanye amaxesha abantu abane-cystic fibrosis abafumani ngokwaneleyo kubo.

Zilolonge

Umsebenzi womzimba ubalulekile ukwenza umzimba wakho ubume ukuze uhambise kwaye ugcine imiphunga yakho isempilweni. Ugqirha wakho unokucebisa ukuba wenze imithambo ekhethekileyo ukomeleza izihlunu ezikunceda uphefumle. Jonga ugqirha wakho kuqala ukuba imithambo oyenzayo ikhuselekile kuwe.

Kwakhona, qhagamshelana neengcali zokutya ngaphambi kokuba uqale nayiphi na inkqubo entsha yokwenza umthambo. Ufuna isondlo esaneleyo ukuxhasa iimfuno zakho zokunyuka kwekhalori.

Ezinye iingcebiso zokuqinisekisa ukukhulelwa okusempilweni

Jonga oogqirha bakho rhoqo. Cwangcisa ukutyelelwa rhoqo kokubeleka kunye nengcali yakho yokubelekisa, kodwa qhubeka nokubona ugqirha ophatha i-cystic fibrosis yakho.

Jonga impilo yakho. Gcina phezulu kweemeko ezinje ngesifo seswekile kunye nesifo sesibindi, ukuba unayo. Ezi zifo zingabangela ukukhulelwa xa ungazinyangi.

Hlala kumayeza akho. Ngaphandle kokuba ugqirha wakho akuxelele ngokuthe ngqo ukuba uyeke amayeza ngexesha lokukhulelwa, thatha rhoqo ukulawula i-cystic fibrosis yakho.

Amayeza okuphepha ngelixa ukhulelwe

Amachiza ayimfuneko ekulawuleni i-cystic fibrosis. Iindaba ezimnandi zezokuba, uninzi lwamayeza anyanga le meko athathwa ngokuba akhuselekile emntwaneni wakho.

Nangona kunjalo, kukho amachiza ambalwa ekufuneka uwasebenzisile ngononophelo. Kukho ithuba elincinci abanokunyusa umngcipheko wokukhubazeka kokuzalwa okanye ezinye iingxaki kusana lwakho olungekazalwa. Iziyobisi ekufuneka zibukiwe zibandakanya:

• antibiotics njenge ciprofloxacin (Cipro), clarithromycin, colistin, doxycycline (Oracea, Targadox), gentamicin (Gentak), imipenem (Primaxin IV), meropenem (Merrem), metronidazole (MetroCream, Noritate), rifampin (Rifadin), trimethop IBactrim), vancomycin (Vancocin)
• iziyobisi ezichasayo ezifana ne-fluconazole (Diflucan), ganciclovir (Zirgan), itraconazole (Sporanox), posaconazole (Noxafil), voriconazole (Vfend)
• iziyobisi ezinjenge-acyclovir (Zovirax)
• i-bisphosphonates ukomeleza amathambo
• iziyobisi ze-cystic fibrosis ezinje nge-ivacaftor (Kalydeco) kunye ne-lumacaftor / ivacaftor (Orkambi)
• i-ranitidine (iZantac) yokunyanga isitshisa kunye ne-reflux yegastroesophageal
• ukuhambisa amayeza ukuthintela ukwaliwa, njenge-azathioprine (Azasan), mycophenolate
• i-ursodiol (i-URSO Forte, i-URSO 250) yokunyibilikisa inyongo

Thetha nogqirha wakho ukuba uthatha nawaphi na ala mayeza. Kuya kufuneka ukuba ulinganise izibonelelo kunye nomngcipheko wokuhlala kuwo nawaphi na amachiza anokubangela iingxaki ngexesha lokukhulelwa. Ugqirha wakho unokukwazi ukukutshintshela kwelinye iyeza de uhambise.

Iingcebiso zokukhulelwa nge-cystic fibrosis

Uninzi lwabasetyhini abanale meko banokukhulelwa, kodwa kungathatha ixesha elincinci kunesiqhelo. ICystic fibrosis yothomalalisa i-mucus kuwo wonke umzimba-kubandakanya i-mucus kumlomo wesibeleko. Ukuncipha kwencindi yomthi kwenza kube nzima ukuba isidoda sendoda sidade siye esibelekweni kwaye sichume iqanda.

Ukusilela kwesondlo kunokuthintela ukuba ungabikho ovulation rhoqo. Ngalo lonke ixesha uhambisa, i-ovary yakho ikhupha iqanda lokuchumisa. Ngaphandle kweqanda endaweni yenyanga nganye, ngekhe ube nakho ukukhulelwa ngokulula.

Ukuba uzame iinyanga ezininzi ukukhulelwa, kodwa khange uphumelele, thetha nengcali yenzala. Amayeza okwandisa imveliso yakho yeqanda okanye ubuchwephesha bokuncedisa ekuzaleni njenge-vitro fertilization inokuwaphucula amathuba akho okukhulelwa.

Amadoda ane-cystic fibrosis anqongophele okanye anebhlokhi ityhubhu ethwala isidoda ukusuka kwityhalarha lisiya kwi-urethra ye-ejaculation. Ngenxa yoku, uninzi alunakukhulelwa ngokwendalo.

Bona kunye neqabane labo baya kufuna i-IVF ukukhulelwa. Ngexesha le-IVF, ugqirha ususa iqanda emfazini kunye nedlozi endodeni, adibanise kwisitya selebhu, aze adlulisele umbungu kwisibeleko sowasetyhini.

Ngaphambi kokuba uqale i-IVF, thetha nogqirha ophatha i-cystic fibrosis yakho. Kuya kufuneka uhlengahlengise unyango lwakho, kuba i-cystic fibrosis inokuchaphazela ukufunxwa kwehomoni efunekayo kwi-IVF.

Yise kude

Ukuba ne-cystic fibrosis akufuneki kukuthintele ukuqala usapho. Ukukhulelwa kungathatha ulungiselelo kunye nokunyamekela.

Nje ukuba ukhulelwe, sebenza ngokusondeleyo kunye nomngcipheko wokubeleka kunye nogqirha ophatha i-cystic fibrosis yakho. Uya kudinga ukhathalelo olufanelekileyo ngalo lonke ixesha lokukhulelwa kwakho ukuze uqiniseke ngesiphumo esona sinokubakho kuwe nakumntwana wakho.