Crystal Evans anga achinetsekana nezvebhakitiriya iri kukura mukati mesilicone chubhu inobatanidza mhepo yake nemhepo inopomba mweya mumapapu ake.
Denda risati rasvika, mukadzi ane makore makumi mana okukura ane chirwere cheuromuscular chinofambira mberi akatevera maitiro akaomarara: Akanyatso kutsiva maseketi epurasitiki anounza mweya kubva mumhepo inofefetera kashanu pamwedzi kuchengetedza sterility.Anoshandurawo silicone tracheostomy chubhu kakawanda pamwedzi.
Asi iye zvino, mabasa aya ave akaoma zvikuru.Kushomeka kwesilicone yezvokurapa-giredhi uye epurasitiki yechubhu yaireva kuti aingoda dunhu idzva mwedzi woga woga.Kubva pakupera kwemachubhu matsva etracheostomy kutanga kwemwedzi wapera, Evans akabika chero chinhu chaaifanira kuchenesa asati ashandisazve, akatora mishonga inorwisa mabhakitiriya kuti auraye chero hutachiona hunogona kunge hwakapotsa, uye aitarisira zvakanakisisa. mhedzisiro.
"Iwe hausi kuda kuisa panjodzi yekutapukirwa uye wopedzisira wava muchipatara," akadaro, achityira kuti anogona kuoneswa hutachiona hwekoronavirus.
Mupfungwa chaiyo, hupenyu hwaEvans hwakabatwa senhapwa kuti vape kuvhiringika kuri kukonzerwa nedenda, zvichiwedzerwa nekudiwa kwezvinhu zvimwe chete izvi muzvipatara zvakabatikana. Kushomeka uku kunopa hupenyu nerufu kwaari uye nemamiriyoni evarwere vanorwara zvisingaperi, vazhinji vavo vari kutonetseka kuti vararame vega.
Mamiriro ezvinhu aEvans atonyanya kuipa nguva pfupi yadarika, semuenzaniso paakabatwa nechirwere chetracheal chinogona kuuraya kunyangwe matanho ese aakatora. Iye zvino ari kutora mushonga unorwisa mabhakitiriya wekupedzisira, waanogamuchira sehupfu hunofanira kusanganiswa nemvura ine utachiona - chimwe chinomunetsa kuwana. "Zvinhu diki zvakadaro," Evans akadaro."
Chinoomesa nhamo yake uye yevamwe varwere vane chirwere chisingaperi chishuwo chavo chekuda kugara kure nechipatara nekuti vanotya kuti vanogona kubata coronavirus kana mamwe hutachiona uye kutambura zvakanyanya.Zvisinei, zvavanoda hazvitarisirwe zvishoma, pamwe nekuti hupenyu hwavo hwekuzviparadzanisa nevamwe hunoita kuti vasaonekwe, uye pamwe nekuti vane mari shoma yekutenga zvichienzaniswa nevarapi vakakura vehutano sezvipatara.
"Mabatirwo anoitwa denda, vazhinji vedu tave kutanga kushamisika - vanhu havana hanya nehupenyu hwedu here?" akadaro Kerry Sheehan weArlington, Massachusetts, musha uri kuchamhembe kweBoston, uyo anga achitarisana nekushomeka kwemishonga inovaka muviri, izvo zvakamubvumira kuti atambure nehutachiona hwehutachiona hwehutachiona hwakaita kuti zvive zvakaoma kutora mishonga kubva mukudya.
Muzvipatara, vanachiremba vanogona kazhinji kuwana zvinotsiva zvinhu zvisingawanikwi, zvinosanganisira catheter, IV packs, zvinovaka muviri, uye mishonga yakadai seheparin, inowanzoshandiswa kuderedza ropa.Asi vatsigiri vehurema vanoti kuwana inishuwarenzi yekuvhara zvimwe zvinhu zvinowanzonetsa kwenguva refu kuvanhu vari kutarisira kutarisira kwavo kumba, uye kusava neinishuwarenzi kunogona kuva nemigumisiro yakakomba.
"Mumwe wemibvunzo mikuru mudenda iri ndewekuti chii chinoitika kana pakashaikwa chimwe chinhu chinodiwa zvakanyanya, sezvo COVID-19 ichiisa zvimwe zvinodiwa pahutano hwehutano?" akadaro Colin Killick, director director weDisability Policy Coalition. Mubatanidzwa uyu isangano reMassachusetts rinotsigira kodzero dzevanhu vakaremara.
Zvakaoma kunyatsoziva kuti vangani vanhu vane zvirwere zvisingaperi kana hurema vanogara vari voga, kwete mumapoka, vanogona kukanganiswa nekushomeka kwezvekushandisa kunokonzerwa nedenda, asi fungidziro iri mumakumi emamiriyoni. Maererano neCenters for Disease Control and Prevention, vanhu vatanhatu pagumi muUS vane chirwere chisingaperi, uye vanopfuura mamirioni makumi matanhatu nerimwe vekuAmerica, hurema hwekunzwa, kana kusanzwa kugona kurarama wakazvimirira.
Nyanzvi dzinoti mishonga yekurapa yakatotetepa nekuda kwekukanganiswa kwekutengesa uye kuwedzera kudiwa kubva kuzvipatara zvakawandirwa nevarwere veCCIDID-19 mune dzimwe nzvimbo dzenyika kwemwedzi yakati wandei.
Zvimwe zvekushandisa pakurapa zvinogara zvichishomeka, akadaro David Hargraves, mutevedzeri wemutungamiri wezvekugovera kuPremier, uyo anobatsira zvipatara kubata mabasa.
"Kazhinji, panogona kunge paine zvinhu zana nemakumi mashanu zvakarongerwa kumashure muvhiki chero ripi zvaro," akadaro Hargraves. ”Nhasi nhamba iyi yadarika chiuru.
ICU Medical, kambani inogadzira tracheostomy tubes inoshandiswa naEvans, yakabvuma kuti kushomeka kunogona kuisa "mutoro wakakura" kune varwere vanovimba nekufema kufema.
"Mamiriro ezvinhu aya akawedzerwa nekushomeka kwesilicone muindasitiri, ndiyo yekutanga kugadzirwa kwetracheostomy tubes," mutauriri wekambani Tom McCall akadaro mune email.
"Kushomeka kwezvinhu muhutano hachisi chinhu chitsva," McCall akawedzera.
Killick, anorwara nemotor dysgraphia, mamiriro anokonzera kunetsa nehunyanzvi hwemotokari hunodiwa kukwesha mazino kana kunyora nerunyoro, akati nguva zhinji panguva yedenda, zvinonyanya kuomera vanhu vakaremara kana zvirwere zvisingaperi kuti vawane zvekushandisa uye kurapwa, Nekuda kwekuwedzera kuri kuda kweveruzhinji zvinhu izvi. zvingabatsira, vamwe vazhinji vanoshandisa mushonga kudzivirira kana kurapa Covid-19 Virus.
"Ini ndinofunga chikamu chepikicha yakakura yevanhu vakaremara vachionekwa sevasina kukodzera zviwanikwa, vasina kukodzera kurapwa, vasina kukodzera kutsigirwa nehupenyu," akadaro Killick.
Sheehan akati anoziva zvazvinoita kuderedzwa. Kwemakore, murume wemakore makumi matatu nemasere, aizviti asiri mabhinari uye akashandisa zvirevo "iye" uye "ivo" zvakasiyana, ainetsekana kudya uye kuchengetedza huremu hwakadzikama sezvo vanachiremba vainetsekana kutsanangura kuti sei aidzikira uremu nekukurumidza .5'7 ″ uye kurema 93bs.
Pakupedzisira, chiremba wemajini akamuwana kuti ane chirwere chisingawanzogarwa nhaka chinonzi Ehlers-Danlos syndrome - mamiriro ezvinhu akawedzerwa nekukuvadzwa kumusana wake wekervical mushure mokunge mutsaona yemotokari.Mushure mokunge dzimwe nzira dzokurapa dzakundikana, chiremba wake akamurayira kuti awane chikafu kumba kuburikidza neIV fluids.
Asi nezviuru zvevarwere veCCIDID-19 vari munzvimbo dzevanorwara zvakanyanya, zvipatara zvave kutanga kutaura kushomeka kwemishonga inovaka muviri.
“Parizvino ndanga ndakarara,” akadaro.” Ndakanga ndisisina simba rakakwana uye ndakamuka ndichinzwa sendisina kuzorora.
Sheehan akati atanga kuonda uye nyama dzake dziri kupera, sezvaakaita asati aonekwa uye akatanga kuwana chikafu cheIV.” Muviri wangu uri kuzvidya wega,” akadaro.
Hupenyu hwake mudenda iri hwawedzerawo kuoma nekuda kwezvimwe zvikonzero. Nekuda kwemask kusimudzwa, ari kufunga kusvetuka kurapa kwemuviri kuchengetedza kushanda kwemhasuru kunyangwe nekudya kushoma - nekuda kwekuwedzera kwenjodzi yekutapukirwa.
"Zvaizoita kuti ndisiye zvinhu zvishoma zvekupedzisira zvandaibatirira pazviri," akadaro, achiti akange apotsa kuungana kwemhuri uye kushanya kwemuzukuru wake waaida kwemakore maviri apfuura." Zoom inogona kukutsigira zvakanyanya.
Kunyangwe denda risati rasvika, munyori wenyaya dzerudo ane makore makumi mana nerimwe Brandi Polatty nevanakomana vake vaviri vachiri kuyaruka, Noah naJona, vaigara muJefferson, Georgia. kuparadzaniswa nevamwe kumba. Vakaneta zvakanyanya uye vanonetseka nekudya. Dzimwe nguva vanonzwa vachirwara zvakanyanya zvekutadza kushanda kana kuenda kuchikoro nguva yakazara nekuti genetic mutation inodzivirira masero avo kuburitsa simba rakakwana.
Zvakatora vanachiremba makore kuti vashandise muscle biopsies uye genetic test kuti vasimbise kuti vane chirwere chisingawanzoitiki chinonzi mitochondrial myopathy chinokonzerwa ne genetic mutation.Mushure mekuedza kukuru uye kukanganisa, mhuri yakawana kuti kuwana zvokudya kuburikidza nechubhu yekudya uye nguva dzose ye IV fluid (ine glucose, mavitamini nezvimwe zvinowedzera) zvakabatsira kujekesa uropi hwehupi uye kuderedza kuneta.
Kuti uenderane nemishonga inoshandura hupenyu, pakati pe2011 ne2013, vose vanaamai nevakomana vachiri kuyaruka vakagamuchira chiteshi chechigarire muchipfuva chavo, dzimwe nguva chinonzi centerline, chinobatanidza catheter kune IV bhegi kubva kuChifuva chakabatanidzwa kune tsinga dziri pedyo nemoyo.
Brandi Poratti akataura kuti nemishonga yenguva dzose yeIV, akakwanisa kudzivisa kuchipatara uye kutsigira mhuri yake nekunyora zvinyorwa zverudo.Pazera remakore gumi nemana, Jona pakupedzisira ane utano hwakakwana zvokuti chifuva chake uye chekudya chekudya chibviswe.Iye zvino anovimba nemishonga yemuromo kuti atarisire chirwere chake.Mukoma wake mukuru, Noa, 16, achiri kuda infusion, asi anonzwa akasimba zvakakwana kuti apfuure kuchikoro, kudzidza uye kuenda kumimhanzi yeG guitar.
Asi ikozvino, kumwe kufambira mberi ikoko kuri kutyisidzirwa nedenda-rakakonzeresa zvimhingamipinyi pakupihwa kwesaline, IV mabhegi uye heparin inoshandiswa naPolatty naNoa kuchengetedza macatheter avo akajeka anogona kuuraya ropa clots uye kudzivirira kutapukira.
Kazhinji, Noa anogamuchira 5,500ml yemvura mumasaga 1,000ml mavhiki maviri ega ega.Nekuda kwekuperevedza, mhuri dzimwe nguva inogamuchira zvinwiwa mumasaga madiki, kubva pamamililita 250 kusvika ku500. Izvi zvinoreva kuzvitsiva kazhinji, kuwedzera mukana wekuunza hutachiona.
"Hazviratidzi sechinhu chikuru, handiti? Tichangochinja bhegi rako, "Brandi Boratti akati. "Asi mvura iyoyo inopinda mumutsara wepakati, uye ropa rinoenda kumwoyo wako. Kana uine utachiona pachiteshi chako, uri kutsvaga sepsis, kazhinji muICU. Ndizvo zvinoita kuti pakati hutsinye hunotyisa. "
Ngozi yehutachiona hwepakati ndeyechokwadi uye yakakomba kunetseka kune vanhu vanowana kurapa kwekutsigira uku, akadaro Rebecca Ganetzky, chiremba anopinda muFrontiers Chirongwa muMitochondrial Medicine paChipatara chevana chePhiladelphia.
Mhuri yePolatty ndeimwe yevarwere vemitochondrial vakawanda vakatarisana nesarudzo dzakaoma panguva yedenda, akadaro, nekuda kwekushomeka kwemasaga eIV, machubhu uye kunyange formula inopa chikafu.Vamwe vevarwere ava havagone kuita pasina hydration uye rutsigiro rwekudya.
Kumwe kuvhiringwa kweketani dzekutengesa kwakasiya vanhu vakaremara vasingakwanisi kutsiva mawiricheya uye zvimwe zvivakwa zvinovatendera kuti vararame vakazvimirira.
Evans, mukadzi wekuMassachusetts aive pamhepo inofefetera, haana kusiya imba yake kwemwedzi inopfuura mina mushure mekunge nzira yekupinda muwiricheya iri kunze kwegonhi rake repamberi yakaora zvisingaite uye yaifanira kubviswa mukupera kwaNovember. Nyaya dzekutengesa dzakasundira mitengo yezvinhu kupfuura yaanogona kuwana pamuhoro wenguva dzose, uye inishuwarenzi yake inopa rubatsiro rushoma chete.
Sezvaaimirira kuti mutengo udzike, Evans aifanira kuvimba nerubatsiro rwavanamukoti uye vabatsiri vehutano hwepamba.Asi pose paipinda mumwe munhu mumba make, aitya kuti vaizounza utachiona mukati - kunyange zvazvo akanga asingakwanisi kubuda mumba, vabatsiri vakauya kuzomubatsira vakaonekwa kuhutachiona kanenge kana.
"Veruzhinji havazive izvo vazhinji vedu vari kubata nazvo panguva yedenda, kana vachida kubuda kunorarama hupenyu hwavo," Evans akadaro. "Asi ivo vari kuparadzira hutachiona."
Vaccines: Unoda yechina yekudzivirira coronavirus here? Vakuru vakabvumidza yechipiri booster kupfura kune vekuAmerica vane makore makumi mashanu kana kupfuura.
Nhungamiro yeMask: Mutongi wedare anodzima mvumo yemasiki yekufambisa, asi nyaya dzeCovid-19 dziri kuramba dzichikwira zvakare.
Kuteedzera hutachiona: Ona ichangoburwa nhamba dzekoronavirus uye kuti maomicron akasiyana ari kupararira pasirese.
Miedzo yekumba: Heino maitiro ekushandisa kumba covid bvunzo, kwaungaiwanepi, uye kuti akasiyana sei kubva kuPCR bvunzo.
Chikwata chitsva cheCDC: Chikwata chitsva chemasayendisiti ehutano chemubatanidzwa chakaumbwa kuti chipe chaiyo-nguva data paiyo coronavirus uye kubuda kweramangwana - "nyika yemamiriro ekunze sevhisi" kufanotaura matanho anotevera mudenda.
Nguva yekutumira: Jun-28-2022