U-Crystal Evans ubekhathazekile ngamagciwane akhula ngaphakathi kwamashubhu e-silicone axhuma uqhoqhoqho lwakhe kumshini wokungenisa umoya ompompa umoya emaphashini akhe.
Ngaphambi kwalolu bhubhane, owesifazane oneminyaka engu-40 ubudala onesifo se-neuromuscular esiqhubekayo walandela isimiso esiqinile: Washintsha ngokucophelela amasekhethi epulasitiki aletha umoya ophuma kumshini wokuphefumula izikhathi ezinhlanu ngenyanga ukuze agcine ubunyumba.Ushintsha futhi ishubhu le-silicone tracheostomy izikhathi eziningana ngenyanga.
Kodwa manje, le misebenzi isibe nzima kakhulu. Ukushoda kwe-silicone yezinga lezokwelapha kanye nepulasitiki yeshubhu kwakusho ukuthi wayedinga kuphela isekethe entsha nyanga zonke. Kusukela ephelelwa amashubhu amasha oqhoqhoqho ekuqaleni kwenyanga edlule, u-Evans wabilisa noma yini okwakudingeka ayibulale ngaphambi kokuba aphinde ayisebenzise, wathatha ama-antibiotics ukuze abulale noma yimaphi amagciwane okungenzeka awageji, futhi enethemba lokungcono. umphumela.
“Awufuni ukuzifaka engcupheni yokutheleleka bese uphelela esibhedlela,” kusho yena, esaba ukuthi angase atholakale engozini ye-coronavirus engase ibulale.
Ngomqondo wangempela, ukuphila kuka-Evans kuye kwabanjwa ukuze kuphazamiseke ukuthengwa kwempahla okubangelwa yilolu bhubhane, okubhebhethekiswe yisidingo salezi zinto ezifanayo ezibhedlela ezimatasatasa. Lokhu kushoda kuletha izinselele zokuphila nokufa kuye kanye nezigidi zeziguli ezigula ngokungalapheki, iningi lazo esivele lidonsa kanzima ukuze liziphilise ngokwazo.
Isimo sika-Evans siye saba sibi kakhulu muva nje, isibonelo lapho ethola isifo soqhoqhoqho esingasongela ukuphila naphezu kwazo zonke izinyathelo zokuphepha azithatha. Manje usethatha isibulala-magciwane angasokugcina, awuthola njengempushana okumele axutshwe namanzi oyinyumba – okunye akuthola kunzima ukukuthola.” Yonke into injalo,” kusho u-Evans.” Kusemazingeni amaningi ahlukene futhi impilo yethu ishintshashintsha.”
Okwenza kube nzima usizi lwakhe nezinye iziguli ezigula okungalapheki isifiso sabo esinzima sokuhlala kude nesibhedlela ngoba besaba ukuthi bangathola i-coronavirus noma amanye amagciwane bese bebhekana nezinkinga ezinkulu. Kodwa-ke, izidingo zabo azinakwa, ngenxa yokuthi ukuphila kwazo ngasese kubenza bangabonakali, futhi ngenxa yokuthi banenzuzo encane yokuthenga uma beqhathaniswa nabahlinzeki bezempilo abakhulu njengezibhedlela.
"Indlela ubhubhane olusingathwa ngayo, abaningi bethu sebeqala ukuzibuza - abantu abanandaba nezimpilo zethu?" kusho uKerry Sheehan wase-Arlington, Massachusetts, indawo esenyakatho yeBoston, obelokhu ebhekene nokushoda kwezithako zokudla okunomsoco emithanjeni, okwamvumela ukuba aphathwe yisifo sezicubu ezixhumene esenza kube nzima ukumunca imisoco ekudleni.
Ezibhedlela, odokotela bavame ukuthola ezinye izinto ezithatha indawo yezimpahla ezingatholakali, okuhlanganisa ama-catheter, amaphakethe e-IV, izithasiselo zokudla okunomsoco, nemithi efana ne-heparin, i-blood thinner evame ukusetshenziswa.Kodwa abameli bokukhubazeka bathi ukuthola umshwalense wokumboza ezinye izinto ngokuvamile kuwumshikashika omude kubantu abaphethe ukunakekelwa kwabo ekhaya, futhi ukungabi nawo umshwalense kungaba nemiphumela emibi kakhulu.
"Omunye wemibuzo emikhulu kulo lonke lolu bhubhane ukuthi kwenzekani uma kungekho okwanele kokuthile okudingeka kakhulu, njengoba i-COVID-19 ibeka izidingo ezengeziwe ohlelweni lokunakekelwa kwezempilo?" kusho uColin Killick, umqondisi omkhulu weDisability Policy Coalition. Umfelandawonye uyinhlangano yaseMassachusetts elwela amalungelo abantu abakhubazekile.” Kuzo zonke izimo, impendulo iwukuthi abantu abakhubazekile bangena ezeni.”
Kunzima ukwazi kahle ukuthi bangaki abantu abanezifo ezingelapheki noma abakhubazekile abahlala bodwa, kunokuba babe ngamaqembu, abangathintwa ukushoda kwezinsiza okubangelwa ubhubhane, kodwa izilinganiso zingamashumi ezigidi. Ngokusho kweCenters for Disease Control and Prevention, abantu abangu-6 kwabayishumi e-US banesifo esingalapheki, futhi abangaphezu kwezigidi ezingu-61 baseMelika abakhubazekile, kuhlanganise nokukhubazeka okulinganiselwe, okuhlanganisa uhlobo oluthile lokukhubazeka, noma ukukhubazeka okulinganiselwe. ikhono lokuphila ngokuzimela.
Ochwepheshe bathi izinsiza zokwelapha sezivele zincane ngenxa yokuphazamiseka kokuhlinzekwa kwezidingo kanye nokukhuphuka kwesidingo esivela ezibhedlela ezikhungethwe yiziguli ze-COVID-19 kwezinye izingxenye zezwe izinyanga.
Ezinye izinsiza zokwelapha zihlala zishoda, kusho uDavid Hargraves, iphini likamongameli omkhulu we-supply chain kwaNdunankulu, esiza izibhedlela ukuphatha izinsiza.
"Imvamisa, kungaba nezinto ezihlukene eziyi-150 ezi-odwe emuva kunoma yiliphi isonto," kusho uHargraves.
I-ICU Medical, inkampani eyenza amashubhu e-tracheostomy asetshenziswa u-Evans, yavuma ukuthi ukushoda kungabeka "umthwalo omkhulu owengeziwe" ezigulini ezithembele ekufakeni umoya ukuze ziphefumule.Inkampani ithe isebenzela ukulungisa izinkinga ze-supply chain.
"Lesi simo sibhebhethekiswa ukushoda kwe-silicone embonini yonke, okuwumthombo oyinhloko wokukhiqiza amashubhu we-tracheostomy," kusho umkhulumeli wenkampani uTom McCall ku-imeyili.
"Ukushoda kwezidakamizwa ekunakekelweni kwezempilo akuyona into entsha," kusho uMcCall." Kepha izingcindezi ezivela kulo bhubhane kanye nezinselelo zamanje zokuhlinzekwa kwempahla emhlabeni jikelele kanye nezinselelo zezimpahla ziye zaba zimbi kakhulu - ngokwenani lemikhiqizo nabakhiqizi abathintekile, kanye nobude besikhathi ukushoda okukhona futhi okuzozwakala.
UKillick, ophethwe yi-motor dysgraphia, okuyisimo esidala ubunzima ngamakhono amahle emoto adingekayo ukuxubha amazinyo noma ukubhala ngesandla, uthe ezimweni eziningi phakathi nobhubhane, kuba nzima kakhulu kubantu abakhubazekile noma abanezifo ezingamahlalakhona ukuthi bathole izinsiza nokunakekelwa kwezempilo, Ngenxa yokwanda kwesidingo somphakathi salezi zinto. kungasiza, abanye abaningi basebenzisa umuthi ukuvimbela noma ukwelapha i-Covid-19 Virus.
“Ngicabanga ukuthi kuyingxenye yendida enkulu yokuthi abantu abakhubazekile babonakale njengabangafanelekeli izinsiza, abangakufanelekeli ukwelashwa, abakufanele ukwesekwa,” kusho uKillick.
U-Sheehan uthe uyazi ukuthi kunjani ukubukelwa phansi.Iminyaka engu-38 ubudala, owayezibheka njengomuntu ongakhethi kanambambili futhi esebenzisa izabizwana ezithi “yena” kanye “nabo” ngokushintshana, ubezabalaza ukuze adle futhi abe nesisindo esiqinile njengoba odokotela bezabalaza ukuchaza ukuthi kungani ayencipha ngokushesha okungaka .5'7″ futhi enesisindo esingama-93bs.
Ekugcineni, isazi sofuzo samthola enesifo esingavamile sofuzo esibizwa ngokuthi i-Ehlers-Danlos syndrome - isimo esabhebhetheka ngenxa yokulimala komgogodla womlomo wesibeletho ngemva kwengozi yemoto.Ngemva kokuba ezinye izindlela zokwelapha zihlulekile, udokotela wakhe wamyala ukuba athole umsoco ekhaya ngokusebenzisa uketshezi lwe-IV.
Kepha ngezinkulungwane zeziguli ze-Covid-19 ezisezikhungweni zabagula kakhulu, izibhedlela seziqala ukubika ukushoda kwezithako zokudla okunomsoco. Njengoba izimo zikhuphuka kulobu busika, kwaba njalo ne-multivitamin ebalulekile efakwa emthanjeni uSheehan ayisebenzisa nsuku zonke. Esikhundleni sokuthatha imithamo eyisikhombisa ngesonto, waqala ngemithamo emithathu kuphela.
“Okwamanje kade ngilele,” kusho yena.” Ngangingenawo amandla anele futhi ngangisavuka ngizizwa sengathi angiphumuli.”
USheehan uthe useqalile ukuncipha emzimbeni futhi nezicubu zakhe ziyawohloka, njengangaphambi kokuthi axilonge futhi aqale ukuthola umsoco we-IV.” Umzimba wami uyazidla,” kusho yena.
Impilo yakhe kulo bhubhane isiphinde yaba nzima ngenxa yezinye izizathu. Njengoba isidingo semaski sesikhulisiwe, ucabanga ukweqa ukwelapha umzimba ukuze alondoloze ukusebenza kwemisipha ngisho nokudla okunomsoco okulinganiselwe - ngenxa yokwanda kwengozi yokutheleleka.
“Kuzongenza ngiyeke izinto ezimbalwa zokugcina ebengibambelele kuzo,” esho, ethi ubephuthelwe imibuthano yomndeni nokuvakashela umshana wakhe amthandayo kule minyaka emibili edlule.” UZoom angakweseka kakhulu nje.”
Ngisho nangaphambi kwalolu bhubhane, umbhali wezincwadi zothando oneminyaka engu-41 uBrandi Polatty namadodana akhe amabili asanda kweva eshumini nambili, uNowa noJona, babehlala eJefferson, eGeorgia. ukuzihlukanisa nabanye ekhaya. Bakhathele kakhulu futhi banenkinga yokudla. Ngezinye izikhathi bazizwa begula kakhulu ukuba bangakwazi ukusebenza noma ukuya esikoleni isikhathi esigcwele ngoba ukuguqulwa kofuzo kuvimbela amangqamuzana abo ekukhiqizeni amandla anele.
Kwathatha iminyaka odokotela ukusebenzisa ama-biopsies emisipha kanye nokuhlolwa kofuzo ukuze baqinisekise ukuthi banesifo esingavamile esibizwa ngokuthi i-mitochondrial myopathy ebangelwa ukuguqulwa kofuzo.Ngemva kokuhlolwa okuningi nephutha, umndeni wathola ukuthi ukuthola izakhi ngeshubhu lokudla kanye noketshezi olujwayelekile lwe-IV (okuqukethe i-glucose, amavithamini nezinye izithako) kwasiza ukusula inkungu yobuchopho nokunciphisa ukukhathala.
Ukuhambisana nokwelashwa okushintsha impilo, phakathi kuka-2011 no-2013, bobabili omama nabafana abasebancane bathola imbobo ehlala njalo esifubeni sabo, ngezinye izikhathi ebizwa ngokuthi i-centerline, exhumanisa i-catheter nesikhwama se-IV esivela esikhwameni Isifuba sixhunywe emithanjeni eseduze nenhliziyo.
U-Brandi Poratti uthe ngoketshezi oluvamile lwe-IV, wakwazi ukugwema ukulaliswa esibhedlela nokusekela umndeni wakhe ngokubhala amanoveli othando.Ku-14, uJona ekugcineni unempilo ngokwanele ukuba akhiphe isifuba sakhe kanye nethubhu yokudla.Manje uthembele emithini yomlomo ukuze alawule isifo sakhe.Umfowabo omdala, uNowa, 16, usadinga ukumnika, kodwa uzizwa eqinile ngokwanele ukuze aphumelele esikoleni, afundele umculo we-GID.
Kepha manje, enye yaleyo nqubekelaphambili isongelwa yizingqinamba ezibangelwa ubhubhane ekunikezeni usawoti, izikhwama ze-IV kanye ne-heparin ezisetshenziswa uPolatty noNoah ukuze bagcine amahlule abo ehlanzekile emahluleni egazi angaba yingozi futhi agweme izifo.
Ngokuvamile, uNowa uthola uketshezi oluyi-5,500ml ezikhwameni ezingu-1,000ml njalo ngemva kwamasonto amabili.Ngenxa yokushoda, ngezinye izikhathi umndeni uthola uketshezi ezikhwameni ezincane kakhulu, ezisukela kumamililitha angu-250 kuya kwangu-500. Lokhu kusho ukushintshwa kaningi, okwandisa amathuba okungenisa izifo.
"Akubonakali njengento enkulu, akunjalo? Sizovele sishintshe isikhwama sakho, "kusho u-Brandi Boratti. "Kodwa lolo ketshezi lungena emgqeni ophakathi, futhi igazi liya enhliziyweni yakho. Uma unesifo echwebeni lakho, ufuna i-sepsis, ngokuvamile e-ICU. Yilokho okwenza umugqa ophakathi wesabe."
Ingozi yokutheleleka nge-centreline iyinkinga yangempela futhi engathi sína kubantu abathola lolu kwelashwa okusekelayo, kusho u-Rebecca Ganetzky, udokotela ohambela uhlelo lwe-Frontiers Programme eMitochondrial Medicine eSibhedlela Sezingane sase-Philadelphia.
Umndeni wakwaPolatty ungomunye weziguli eziningi zesifo se-mitochondrial ezibhekene nokukhetha okunzima phakathi nalolu bhubhane, wathi, ngenxa yokushoda kwezikhwama ze-IV, amashubhu ngisho nefomula elinikeza umsoco.
Okunye ukuphazamiseka kwe-supply chain kushiye abantu abakhubazekile bengakwazi ukushintsha izingxenye zezihlalo zabakhubazekile nezinye izinsiza ezibenza bakwazi ukuphila ngokuzimela.
U-Evans, owesifazane waseMassachusetts owayesebenzisa umshini wokuphefumula, akazange alishiye ikhaya lakhe isikhathi esingaphezu kwezinyanga ezine ngemva kokuba irempu yokungena ngesihlalo sabakhubazekile ngaphandle komnyango wangaphambili wabola kangangokuthi kwadingeka asuswe ekupheleni kukaNovemba.
Njengoba elinde ukuthi intengo yehle, u-Evans kwadingeka athembele osizweni lwabahlengikazi kanye nabasizi bezempilo yasekhaya.Kodwa njalo lapho othile engena emzini wakhe, wayesaba ukuthi bazoletha leli gciwane - nakuba ayengakwazi ukuphuma endlini, abasizi abeza ukuzomsiza babevezwa igciwane okungenani izikhathi ezine.
"Umphakathi awazi ukuthi iningi lethu libhekene nani ngalesi sikhathi sodlame, lapho lifuna ukuphuma liyophila impilo yalo," kusho u-Evans. “Kodwa-ke basakaza leli gciwane.”
Imithi yokugoma: Uyawudinga umuthi wesine wokugomela i-coronavirus? Izikhulu zigunyaze ukudubula kwesibili kwe-booster kubantu baseMelika abaneminyaka engu-50 noma ngaphezulu. Umgomo wezingane ezincane nawo ungase utholakale maduze.
Isiqondiso Semaski: Ijaji lombuso lihoxisa ukugunyazwa kwemaski zokuhamba, kodwa amacala e-covid-19 ayanda futhi.Sidale umhlahlandlela wokukusiza ukuthi unqume ukuthi uqhubeke yini ugqoke izinto zokuvala ubuso.Iningi lochwepheshe lithi kufanele uqhubeke uzigqokile endizeni.
Ukulandelela leli gciwane: Bona izinombolo zakamuva ze-coronavirus nokuthi okuhlukile kwe-omicron kusabalala kanjani emhlabeni jikelele.
Ukuhlolwa kwasekhaya: Nansi indlela yokusebenzisa ukuhlolwa kwe-covid yasekhaya, ukuthi ungayithola kuphi, nokuthi ihluke kanjani ekuhlolweni kwe-PCR.
Iqembu elisha le-CDC: Sekusungulwe ithimba elisha lososayensi bezempilo benhlangano ukuhlinzeka ngemininingwane yesikhathi sangempela nge-coronavirus nokuqubuka kwekusasa - "inkonzo yesimo sezulu kazwelonke" yokubikezela izinyathelo ezilandelayo kulo bhubhane.
Isikhathi sokuthumela: Jun-28-2022