Ngenxa yokushoda kwezifo eziwubhubhane, iziguli ezigula okungalapheki zibhekana nezinselele zokuphila nokufa

Ngenxa yokushoda kwezifo eziwubhubhane, iziguli ezigula okungalapheki zibhekana nezinselele zokuphila nokufa

Ngenxa yokushoda kwezifo eziwubhubhane, iziguli ezigula okungalapheki zibhekana nezinselele zokuphila nokufa

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. inyanga.
Kodwa manje, le misebenzi isinzima kakhulu. Ukushoda kwe-silicone yezinga lezokwelapha kanye nepulasitiki yeshubhu kwakusho ukuthi wayedinga kuphela isekethe entsha nyanga zonke. Kusukela ephelelwe amashubhu amasha oqhoqhoqho ekuqaleni kwenyanga edlule, u-Evans wayebilisa noma yini ayenayo ukuze abulale inzalo. ngaphambi kokusetshenziswa kabusha, wathatha ama-antibiotics ukuze abulale noma yimaphi amagciwane okungenzeka awaphuthelwe, futhi enethemba lokungcono kakhulu.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, okubhebhethekiswa isidingo salezi zinto ezifanayo ezibhedlela ezimatasatasa. iziguli, eziningi zazo ezivele zithwele kanzima ukuze ziphile zodwa.
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 angasithatha isinyathelo sokugcina, alithola njengempushana okufanele ixutshwe namanzi oyinyumba. – enye into akuthola kunzima ukuyithola.” Yonke into encane injalo,” kusho u-Evans.” Kumazinga amaningi ahlukene futhi yonke into icekela phansi izimpilo zethu.”
Okwenza usizi lwakhe nezinye iziguli ezigula okungalapheki zibe nzima isifiso sabo esinzima sokuhlala kude nesibhedlela ngoba besaba ukuthi bangase bathole i-coronavirus noma amanye amagciwane bese bebhekana nezinkinga ezinkulu. Nokho, izidingo zabo azinakwa, ngenxa yokuthi ukuphila kwazo zodwa azibonakali, futhi ngokwengxenye ngenxa yokuthi zinamandla amancane okuthenga uma ziqhathaniswa 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, into evame ukusetshenziswa enciphisa igazi. ukuphatha 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, abangathinteka ngenxa yokushoda kwezinsiza ezibangelwa ubhubhane, kodwa izilinganiso zingamashumi ezigidi.Ngokusho kweCenters for Disease Control and Prevention , abantu abangu-6 kwabayishumi e-US banesifo esingamahlalakhona, futhi abantu baseMelika abangaphezu kwezigidi ezingu-61 banohlobo oluthile lokukhubazeka - okuhlanganisa ukuhamba okulinganiselwe, ukuqonda, ukuzwa, ukubona, noma ikhono lokuphila ngokuzimela.
Ochwepheshe bathi izinsiza zezokwelapha 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, osiza 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 sibhebhezelwa 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 zempahla ziye zaba zimbi kakhulu - ngokwenani lemikhiqizo nabakhiqizi abathintekile, kanye nobude besikhathi ukushoda kube khona futhi kuzozwakala.”
UKillick, ophethwe yi-motor dysgraphia, okuyisimo esidala ubunzima ngamakhono amahle emoto adingekayo ukuxubha amazinyo noma ukubhala ngokubhala ngesandla, uthe ezimweni eziningi phakathi nobhubhane, kuba nzima kakhulu ukuthi abantu abakhubazekile noma abanezifo ezingamahlalakhona bathole izinsiza. kanye nokunakekelwa kwezempilo, Ngenxa yokwanda kwesidingo somphakathi salezi zinto.Ngaphambili, ukhumbule ukuthi iziguli ezinezifo ezizimele zazizabalaza kanjani ukuhlangabezana nemiyalelo yazo ye-hydroxychloroquine ngoba, naphezu kokuntuleka kobufakazi bokuthi izosiza, abanye abaningi basebenzisa umuthi ukuvimbela noma ukwelapha. Igciwane le-covid19.
“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 njengodokotela. uzabalaze ukuchaza ukuthi kungani ayencipha ngokushesha kangaka .5'7″ futhi enesisindo esingama-93 lbs.
Ekugcineni, isazi sofuzo samthola enesifo esingavamile sofuzo esibizwa ngokuthi i-Ehlers-Danlos syndrome - isimo esanda ngenxa yokulimala komgogodla womlomo wesibeletho ngemva kwengozi yemoto.Ngemva kokuba ezinye izindlela zokwelapha zihlulekile, udokotela wakhe wamyala ukuba athole umsoco ekhaya nge-IV. uketshezi.
Kepha ngezinkulungwane zeziguli ze-Covid-19 ezisezikhungweni zabagula kakhulu, izibhedlela seziqala ukubika ukushoda kwezithako zokudla okunomsoco. waqala ngemithamo emithathu kuphela. Kwakukhona amasonto lapho ayenezinsuku ezimbili kuphela kweziyisikhombisa ngaphambi kokuthunyelwa kwakhe okulandelayo.
“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 nokuhlola izakhi zofuzo ukuze baqinisekise ukuthi banesifo esingavamile esibizwa ngokuthi i-mitochondrial myopathy esibangelwa ukuguqulwa kofuzo.Ngemva kokuhlolwa okuningi kanye nephutha, umndeni wathola ukuthi ukuthola imisoco ngeshubhu yokudla kanye noketshezi oluvamile lwe-IV (oluqukethe i-glucose , amavithamini nezinye izithasiselo) kusize 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, exhuma i-catheter nesikhwama se-IV esivela esifubeni sixhunywe emithanjeni eseduze. inhliziyo.Amachweba enza kube lula ukuphatha uketshezi lwe-IV ekhaya ngoba ama-Boratti akudingeki azingele imithambo okunzima ukuyithola futhi aphushe izinaliti ezingalweni zawo.
UBrandi Poratti uthe ngoketshezi olujwayelekile lwe-IV, wakwazi ukugwema ukulaliswa esibhedlela futhi wondla umndeni wakhe ngokubhala amanoveli othando. Eneminyaka engu-14, uJona ekugcineni usephile saka ngokwanele ukuba akhishwe isifuba sakhe neshubhu lokudla. Manje usethembele emithini yomlomo ukuze alawule impilo yakhe. isifo.Umfowabo omdala, uNowa, 16, usadinga ukumnika, kodwa uzizwa eqinile ngokwanele ukuba afundele i-GED, aphase, futhi aye esikoleni somculo ukuze afunde isiginci.
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 ayingozi futhi agweme izifo.
Ngokuvamile, uNowa uthola uketshezi oluyi-5,500ml ezikhwameni eziyi-1,000ml njalo ngemva kwamasonto amabili. izifo.
“Akubonakali njengento enkulu, akunjalo?Sizovele sishintshe isikhwama sakho,” kusho uBrandi Boratti.” Kodwa lolo ketshezi lungena emgqeni ophakathi nendawo, futhi igazi liya enhliziyweni yakho.Uma unokutheleleka echwebeni lakho, ufuna i-sepsis, ngokuvamile e-ICU.Yilokho okwenza i-centralline isabe.”
Ingozi yokutheleleka kwe-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 umgwaqo ongenela ngesihlalo sabakhubazekile ngaphandle komnyango wangaphambili wabola kangangokuthi kwadingeka ususwe ngasekupheleni kukaNovemba. angakwazi ukukhokhela ngeholo elivamile, futhi umshwalense wakhe unikeza usizo olulinganiselwe kuphela.
Njengoba elinde ukwehla kwentengo, u-Evans kwadingeka athembele osizweni lwabahlengikazi kanye nabasizi bezempilo yasekhaya. abeza ukuzomsiza bavezwe 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 isembozo sobuso. Iningi lochwepheshe lithi kufanele uqhubeke uzigqokile indiza.
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 kanye nokuqubuka kwekusasa - "inkonzo yesimo sezulu kazwelonke" yokubikezela izinyathelo ezilandelayo kulo bhubhane.


Isikhathi sokuthumela: Jun-28-2022