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Global ARCH / Akohlulwanga  / Awusoze umdala kakhulu ukuba ungadinga umama wakho: uhambo lwam lwe-CHD

Awusoze umdala kakhulu ukuba ungadinga umama wakho: uhambo lwam lwe-CHD

le Iveki yokuQatshelwa kwentliziyo yeNtliziyo (NgoFebruwari 7-14) "Ndibhiyozela" ebhedini yam edolophini Isibhedlele saseToronto. Ndilapha amaxesha amaninzi kwiinyanga ezili-11 ezidlulileyo, kuba kanye ngaphambi kokuba sibambe iqhosha le-COVID-19. Intliziyo yam enesiphene, ibizwa Itetralogy yoBuxoki, yaqalisa ukubangela ukuba intliziyo yam ibethe ngokukhawuleza kangangokuba ibe ngathi ndinentaka encinane ephakuzelayo, efana nentaka, evaleleke esifubeni sam. Ayenzi buhlungu, kodwa yenza ubomi bube nzima kwaye budinise, kwaye kuyingozi ukuba ayiphathwa. Xa intliziyo yam ibuyela kwisigqi, mhlawumbi iyodwa, okanye ngokothuka, okanye ngamayeza, yonke into ithi cwaka kwaye ithule. Kufuneka ndibambe ingalo yam okanye into endijikelezileyo ukujonga ukuba ndisekhona na. Inokuba ibangelwa kukukrala kotyando lwentliziyo ebendinalo ngaphambili. Eyona nto yenza ukuba esi sibhedlele sihlale sesona sicelomngeni asinanto yakwenza ne-COVID, okanye into yokuba wonke umntu ugqunywe isigqubuthelo kwaye akukho ndwendwe zivumelekileyo. Kungenxa yokuba umama wam - umlandeli wam omkhulu kunye nomxhasi wam - wasweleka kwiintsuku ezi-3 ezidlulileyo, ubukhulu becala ebudaleni. Ubekunye nam kuhambo lwam lwesifo sentliziyo yokuzalwa yonke iminyaka yam engama-58, nangona ndamcela ukuba ayeke ukuya kwidinga kunye nam xa ndandineminyaka eli-15 ubudala. Ndibelapho nam kwigumbi labagula kakhulu, kwaye kumagumbi okulinda amalunga ne-1,000 endleleni, ndingakhalazi okanye ndenze isithukuthezi okanye ndiphelelwe ngumonde – nangona ndiqinisekile ukuba wayenjalo. Wayesoloko endikhuthaza ukuba ndizithethelele nangona ndandineentloni yaye ndingafuni. Emva kokuqeshwa kunye neenkqubo kwi Isibhedlele Sabantwana Abagulayo okanye kugqirha wabantwana besifumana iiswitshi zeshizi eyosiweyo, iHoneydew, okanye isandwich zeqhwa ezivela koomatshini abathengisa esibhedlele. Wayengandibizi “njengegorha” okanye enze impikiswano. Wayethule ethe xhaxhe kwinkxaso yakhe, kwaye kum ukuphuma kwethu kwakusoloko kufana nokuzonwabisa. Wenza ngale ndlela nangona wayenabanye abantwana abathathu ukuba abuyele ekhaya. Andazi ukuba wenze njani.

Kwiminyaka eyadlulayo xa wayefuduka endlini safumana idayari yakhe endala, apho wayegcina ingxelo yoko kwakuqhubeka ebomini bakhe. Ndamfumana ngo-1961 ndaza ndabuyela kuSeptember xa wayeqala ukundimitha. Uninzi lwamangeno lwaluqhelekile - thatha uJohn kwi-band practice, ukuqeshwa kweenwele - izinto ezinjalo. Kodwa kwelinye iphepha kwathiwa "Ndine-cocktail ye-shrimp". "Kutheni uyibhale phantsi loo nto?" Ndibuzile. Watsho ukuba uye waba ne-hives enkulu emva kokutya i-shrimp, kwaye ugqirha wakhe wammisela i-prednisone. Isenokuba okanye ayinanto yakwenza nesiphene sentliziyo yam – asoze sazi.

Kusuku olungaphambi kokuba asweleke sincokola emnxebeni, mna ebhedini yam esesibhedlele yena esihlalweni sakhe e-US bendingekamboni unyaka onesiqingatha, indibaniselwano yeengxaki zam zempilo kunye noCovid . Uye wathi, "ndiyaxolisa ukuba uneengxaki ezininzi kangaka nentliziyo yakho", ndaye ndathi "kulungile mama ukuba ubungekho le cocktail ye-shrimp!", Ndaye ndahleka, kuba ayinamsebenzi, kwaye kwiimeko ezininzi akukho sizathu sokuba abanye bethu babandezeleke ngaphezulu kwabanye kwizigidi zeendlela ezahlukeneyo. Ukuba uninzi lwethu lunamalungu omzimba ngendlela eyiyo ngummangaliso ngokwawo. Waqala ke ukuhleka ngalondlela wenza ngayo xa ecinga ukuba kukho into ehlekisayo, wosula inyembezi zihleka ngecala lezandla zakhe. Uhlobo lokuhleka esasithanda ukuluva, kuba wayeyintombazana kwaye ukuhleka kwakhe kuyosulela. Kwaye wathi makaye kwigumbi lokuhlambela evela kuyo yonke intsini kwaye ke siye savalelisana, ndizokufowunela ngomso. Kwaye yile nto yokugqibela esiyithethileyo. 

Indenze ndacinga ngendlela abantwana abaneziphene zentliziyo, ukuba banokufikelela kukhathalelo olundilisekileyo, baya kukhula babe ngabantu abadala abazalwa sisifo sentliziyo. Kuya kufuneka bomelele kwaye bomelele, kwaye bafunde ukuzithethelela. Ngokuqinisekileyo asingabo bonke abantwana okanye abantu abadala abaya kukwazi; abanye baya kufuna inyameko ekhethekileyo ngenxa yeengxaki zempilo. Kwezinye iindawo zehlabathi, njengaseKhanada apho ndihlala khona, ngoku kukho abantu abadala abazalwa nesifo sentliziyo kunabantwana, yaye abaninzi kuthi kuya kufuneka, ngaxa lithile, baphile ngaphandle komama nootata bethu. Kuya kufuneka somelele ngokwethu kuba isifo sentliziyo esazalwa sizalwa sinzima – ayisosigwebo sobomi bonke, kodwa luhambo lobomi. Kwaye nangona uninzi lwethu lungaziboni njengamajoni, okanye sifuna ukubizwa ngolo hlobo, singaba siyathanda okanye asithandi.

Singathanda ukuva kuwe. Ukuba unento ongathanda ukwabelana ngayo ngobomi bakho okanye ukusebenza ne-CHD / RHD nceda imeyile info@global-arch.org (Amagama ayi-1000 ubuninzi nceda).

UShelagh Ross

Nahimeh UJaffar 

Nahimeh UJaffar Unayo usebenze njengoMphathi weProjekthi oqinisekisiweyo (i-PMP) kwiinkalo ezahlukeneyo, kubandakanywa iMpilo yoLuntu, i-Biotech, kunye ne-Pharmaceuticals, esebenza ngaphakathi kwezicwangciso zeklinikhi ezifana nezibhedlele kunye neekliniki. Ukongeza, usebenze noluntu lwehlabathi eAfrika, kwiCaribbean, nakuMbindi Mpuma, exhasa iiprojekthi ezahlukeneyo zempembelelo yoluntu. Nksk. UJaffar uye wabandakanyeka kumanyathelo okukhusela ezempilo ngokubambisana neZiko loLawulo lweZifo (CDC, USA) kunye neZiko leMedicare kunye neeNkonzo zeMedicaid (CMS, USA).

 

Nksk. UJaffar ubambe isidanga se-MBA kuPhuhliso lweShishini esuka kwiZiko laseSwitzerland loLawulo oluPhezulu, eVevey, eSwitzerland, kunye nesidanga se-bachelor kwiMicimbi yabaThengi kwiYunivesithi yaseCalifornia State, eNorthridge, eMelika.

Amy Verstappen, uMongameli

U-Amy Verstappen ebengummeli wezigulana kunye nomhlohli wezempilo ukusukela ngo-1996, xa eyakhe imiceli mngeni ephila nesiphene sentliziyo yamkhokelela kwi-Adult Congenital Heart Association, apho wakhonza njengomongameli ukusuka ngo-2001 ukuya ku-2013. Usebenze njengomcebisi Amaziko oLawulo lweZifo iZiko leSizwe leNtliziyo, iMiphunga kunye neGazi; kunye noMbutho waMazwe ngaMazwe weSifo seNtliziyo esiDala sabantu abaDala, kwaye wasebenza nesigulana sentliziyo esibelekweni kunye namaqela eengcali kulo lonke elaseMelika nasehlabathini. UNks Verstappen ufumene iMasters kwiMfundo kwi-1990 kunye neMasters kwi-Global Health kwi-2019.