Crystal Evans wakhala akuda nkhawa ndi mabakiteriya omwe amamera mkati mwa machubu a silikoni omwe amalumikiza chitoliro chake ndi mpweya wopopera mpweya m'mapapu ake.
Mliriwu usanachitike, mayi wazaka 40 yemwe anali ndi matenda a neuromuscular opita patsogolo adatsata njira yokhazikika: Anasintha mosamalitsa mabwalo apulasitiki omwe amatumiza mpweya kuchokera ku makina opangira mpweya kasanu pamwezi kuti asunge sterility. Amasinthanso chubu la silicone tracheostomy kangapo pamwezi.
Koma tsopano, ntchitozi zakhala zovuta kwambiri.Kuperewera kwa silikoni yachipatala ndi pulasitiki ya chubu kumatanthauza kuti ankangofunika dera latsopano mwezi uliwonse.Kuchokera pamene adatuluka machubu atsopano a tracheostomy kumayambiriro kwa mwezi watha, Evans adaphika chilichonse chimene anayenera kuti asamawononge asanagwiritsenso ntchito, adamwa maantibayotiki kuti aphe tizilombo toyambitsa matenda zomwe mwina zinaphonya, ndipo ankayembekezera zabwino. zotsatira.
"Simukufuna kutenga matenda ndikugonekedwa m'chipatala," adatero, akuwopa kuti atha kukhala ndi matenda oopsa a coronavirus.
M'lingaliro lenileni, moyo wa Evans wagwidwa kuti asokonezeke chifukwa cha mliriwu, zomwe zikuchulukirachulukira chifukwa cha kufunikira kwa zinthu zomwezi m'zipatala zotanganidwa.
Vuto la Evans lafika poipa kwambiri posachedwapa, mwachitsanzo pamene adatenga matenda owopsa a trachea ngakhale adatsata njira zonse zodzitetezera. Panopa akumwa mankhwala opha mabakiteriya, omwe amawalandira ngati ufa womwe umayenera kusakanizidwa ndi madzi osabala - mankhwala ena omwe amavutika kuti apeze.
Chowonjezera kuvutika kwa iye ndi odwala ena omwe akudwala kwambiri ndikufunitsitsa kwawo kukhala kutali ndi chipatala chifukwa akuopa kuti atha kutenga kachilombo ka coronavirus kapena tizilombo toyambitsa matenda ndikuvutika ndi zovuta zina.
"Momwe mliriwu ukuchitikira, ambiri aife tayamba kudabwa - kodi anthu sasamala za moyo wathu?" adatero Kerry Sheehan wa ku Arlington, Massachusetts, dera la kumpoto kwa Boston, yemwe wakhala akulimbana ndi kusowa kwa zakudya zowonjezera m'mitsempha, zomwe zinamupangitsa kuti azidwala matenda okhudzana ndi matenda omwe amachititsa kuti zikhale zovuta kuti atenge zakudya kuchokera ku chakudya.
M'zipatala, madokotala nthawi zambiri amatha kupeza m'malo mwa zinthu zomwe sizikupezeka, kuphatikizapo catheter, IV mapaketi, zowonjezera zakudya, ndi mankhwala monga heparin, mankhwala omwe amagwiritsidwa ntchito mofala kwambiri.
"Limodzi mwamafunso akulu pa mliriwu ndi chiyani chomwe chimachitika pakakhala palibe chinthu chokwanira chomwe chikufunika, popeza COVID-19 imafuna zambiri pazachipatala?" atero a Colin Killick, wamkulu wa Disability Policy Coalition. Mgwirizanowu ndi bungwe la Massachusetts lochirikiza ufulu wachibadwidwe wa anthu olumala.” Mulimonse mmene zingakhalire, yankho nlakuti anthu olumala sakhala opanda pake.”
Ndizovuta kudziwa kuti ndi anthu angati omwe ali ndi matenda aakulu kapena olumala omwe akukhala okha, osati m'magulu, omwe angakhudzidwe ndi kuchepa kwa zinthu zomwe zimayambitsidwa ndi mliriwu, koma kuyerekezera kuli m'mamiliyoni. kutha kukhala paokha.
Akatswiri ati zipatala zayamba kale kuonda chifukwa cha kusokonekera kwa zinthu komanso kuchuluka kwa zipatala zomwe zidalemedwa ndi odwala a COVID-19 m'malo ena mdzikolo kwa miyezi ingapo.
Zida zina zachipatala zimasowa nthawi zonse, atero a David Hargraves, wamkulu wachiwiri kwa purezidenti wopereka chithandizo ku Premier, yemwe amathandiza zipatala kusamalira ntchito.
"Nthawi zambiri, patha kukhala zinthu 150 zotsatiridwa sabata iliyonse," adatero Hargraves.
ICU Medical, kampani yomwe imapanga machubu a tracheostomy omwe amagwiritsidwa ntchito ndi Evans, adavomereza kuti kusowa kungathe kuika "mtolo waukulu" kwa odwala omwe amadalira intubation kuti apume.
"Izi zikuchulukirachulukira chifukwa cha kuchepa kwa silikoni m'makampani, zomwe ndizofunikira kwambiri popanga machubu a tracheostomy," wolankhulira kampani Tom McCall adatero mu imelo.
"Kuperewera kwa zinthu pazaumoyo sichachilendo," a McCall adawonjezeranso.
Killick, yemwe ali ndi motor dysgraphia, vuto lomwe limayambitsa zovuta zamagalimoto omwe amafunikira kutsuka mano kapena kulemba ndi manja, adati nthawi zambiri panthawi ya mliriwu, zimakhala zovuta kuti anthu olumala kapena matenda osatha apeze chithandizo chamankhwala, chifukwa cha kuchuluka kwa zinthu zomwe anthu amafunikira. zingathandize, ena ambiri amagwiritsa ntchito mankhwalawa kupewa kapena kuchiza kachilombo ka Covid-19.
"Ndikuganiza kuti ndi gawo lachiwonetsero chachikulu cha anthu olumala omwe amawoneka ngati osayenerera, osayenera kulandira chithandizo, osayenera kuthandizidwa," adatero Killick.
Sheehan adanena kuti akudziwa momwe zimakhalira kukhala wonyozeka.Kwa zaka zambiri, wazaka 38, yemwe ankadziona kuti sanali wabinary ndipo ankagwiritsa ntchito matanthauzo akuti "iye" ndi "iwo" mosiyana, ankavutika kuti adye ndikukhalabe olemera kwambiri pamene madokotala ankavutika kuti afotokoze chifukwa chake anali kuonda mofulumira kwambiri .5'7 ″ ndi kulemera kwa 93bslbs.
Potsirizira pake, katswiri wa majini anamupeza kuti ali ndi matenda osowa kwambiri omwe amabadwa nawo otchedwa Ehlers-Danlos syndrome - matenda omwe amakula chifukwa cha kuvulala kwa msana wake wa khomo lachiberekero pambuyo pa ngozi ya galimoto.Pambuyo pa njira zina zochiritsira zinalephera, dokotala wake adamuuza kuti apeze zakudya kunyumba kudzera mu madzi a IV.
Koma ndi masauzande a odwala a Covid-19 omwe ali m'malo osamalira odwala kwambiri, zipatala zikuyamba kunena za kuchepa kwa zakudya zopatsa thanzi m'mitsempha. Milandu ikukwera nyengo yozizira, momwemonso ma multivitamin ofunikira omwe Sheehan amagwiritsa ntchito tsiku lililonse. M'malo momwa Mlingo seveni pa sabata, adayamba ndi Mlingo itatu yokha.
Iye anati: “Tsopano ndakhala ndikugona.” Ndinalibe mphamvu zokwanira ndipo ndinadzukabe ndikumva ngati sindikupumula.
Sheehan adati wayamba kuchepa thupi ndipo minofu yake ikucheperachepera, monga momwe adadziwikiratu ndikuyamba kulandira zakudya za IV. "Thupi langa likudzidya lokha," adatero.
Moyo wake pa mliriwu wayambanso kukhala wovuta pazifukwa zina. Atachotsa kufunika kwa chigoba, akuganiza zodumphadumpha chithandizo chamankhwala kuti asunge minofu ngakhale atadya zakudya zochepa - chifukwa cha chiwopsezo chotenga matenda.
"Zinandipangitsa kusiya zinthu zingapo zomaliza zomwe ndidali nazo," adatero, ponena kuti adaphonya misonkhano yabanja ndi kukacheza ndi mdzukulu wake wokondedwa kwa zaka ziwiri zapitazi. ”Zoom angakuthandizeni kwambiri.
Ngakhale mliriwu usanachitike, wolemba nkhani zachikondi wazaka 41 a Brandi Polatty ndi ana ake aamuna awiri achichepere, Noah ndi Yona, amakhala ku Jefferson, Georgia. kudzipatula kwa ena kunyumba. Iwo ali otopa kwambiri ndipo amavutika kudya. Nthawi zina amadwala kwambiri moti sangathe kugwira ntchito kapena kupita kusukulu nthawi zonse chifukwa kusintha kwa majini kumalepheretsa maselo awo kupanga mphamvu zokwanira.
Zinatenga zaka za madokotala kuti agwiritse ntchito ma biopsies a minofu ndi kuyesedwa kwa majini kuti atsimikizire kuti ali ndi matenda osowa kwambiri otchedwa mitochondrial myopathy chifukwa cha kusintha kwa chibadwa.Pambuyo pa mayesero ambiri ndi zolakwika, banja linapeza kuti kupeza zakudya kudzera mu chubu chodyera ndi madzi okhazikika a IV (omwe ali ndi shuga, mavitamini ndi zina zowonjezera) zinathandiza kuti ubongo ukhale ndi chifunga komanso kuchepetsa kutopa.
Kuti mukhale ndi chithandizo chosintha moyo, pakati pa 2011 ndi 2013, amayi onse ndi anyamata achichepere adalandira doko lokhazikika pachifuwa chawo, lomwe nthawi zina limatchedwa centerline, lomwe limagwirizanitsa catheter ku thumba la IV kuchokera pachifuwa cholumikizidwa ndi mitsempha yomwe ili pafupi ndi mtima.
Brandi Poratti adanena kuti ndi madzi okhazikika a IV, adatha kupeŵa kuchipatala ndikuthandizira banja lake polemba mabuku achikondi.Pa 14, Yona pamapeto pake ali ndi thanzi labwino kuti achotse chifuwa chake ndi chubu chodyetsa.Iye tsopano amadalira mankhwala a m'kamwa kuti athetse matenda ake.Mchimwene wake wamkulu, Nowa, 16, akufunikirabe kulowetsedwa, koma akumva kuti ali ndi mphamvu zokwanira kuti apite kusukulu, kuphunzira ndi kuphunzira nyimbo za guitar.
Koma tsopano, zina mwazomwezi zikuwopsezedwa ndi zovuta zobwera chifukwa cha miliri pakupereka saline, matumba a IV ndi heparin omwe Polatty ndi Noah amagwiritsa ntchito kuti ma catheter awo asakhale ndi magazi omwe angayambitse kupha komanso kupewa matenda.
Kawirikawiri, Nowa amalandira 5,500ml yamadzimadzi m'matumba a 1,000ml milungu iwiri iliyonse. Chifukwa cha kusowa, banja nthawi zina limalandira zakumwazo m'matumba ang'onoang'ono, kuyambira 250 mpaka 500 milliliters.
"Sizikuwoneka ngati vuto lalikulu, chabwino? Tidzangosintha thumba lanu, "adatero Brandi Boratti. "Koma madzimadziwo amapita kumalo apakati, ndipo magazi amapita kumtima wanu. Ngati muli ndi matenda padoko lanu, mukuyang'ana sepsis, nthawi zambiri ku ICU. Ndicho chimene chimapangitsa kuti pakati pawo mukhale woopsa kwambiri. "
Kuopsa kwa matenda apakati ndi vuto lenileni komanso lalikulu kwa anthu omwe akulandira chithandizo chothandizira ichi, adatero Rebecca Ganetzky, dokotala wopita ku Frontiers Program mu Mitochondrial Medicine ku Children's Hospital of Philadelphia.
Banja la Polatty ndi limodzi mwa odwala ambiri a mitochondrial omwe akukumana ndi zisankho zovuta panthawi ya mliriwu, adatero, chifukwa cha kusowa kwa matumba a IV, machubu komanso ngakhale mankhwala omwe amapereka zakudya.
Kusokonekera kwina kwa chain chain kwasiya anthu olumala osatha kusintha zida za olumala ndi zida zina zomwe zimawalola kukhala paokha.
Evans, mayi wina wa ku Massachusetts yemwe anali pa makina opangira mpweya, sanachoke kunyumba kwake kwa miyezi yoposa inayi pambuyo poti msewu wolowera chikuku kunja kwa khomo lake unavunda ndipo umayenera kuchotsedwa kumapeto kwa November.
Pamene ankayembekezera kuti mtengo utsike, Evans anayenera kudalira thandizo la anamwino ndi othandizira zaumoyo kunyumba.Koma nthawi zonse pamene wina adalowa m'nyumba mwake, amawopa kuti abweretsa kachilomboka - ngakhale kuti sanathe kutuluka m'nyumbamo, othandizira omwe adabwera kudzamuthandiza adakumana ndi kachilomboka kasachepera kanayi.
"Anthu sakudziwa zomwe ambiri aife tikukumana nazo panthawi ya mliriwu, akafuna kutuluka kuti akakhale ndi moyo," adatero Evans. "Koma ndiye akufalitsa kachilomboka."
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Chitsogozo cha Mask: Woweruza waboma achotsa chilolezo choyendetsa chigoba, koma milandu ya Covid-19 ikuchulukirachulukira. Tapanga chitsogozo chokuthandizani kusankha ngati mupitiliza kuvala chophimba kumaso.
Kutsata kachilomboka: Onani manambala aposachedwa a coronavirus ndi momwe mitundu ya ma omicron ikufalikira padziko lonse lapansi.
Mayeso akunyumba: Umu ndi momwe mungagwiritsire ntchito mayeso a covid kunyumba, komwe mungawapeze, komanso momwe amasiyanirana ndi mayeso a PCR.
Gulu Latsopano la CDC: Gulu latsopano la asayansi azaumoyo m'boma lakhazikitsidwa kuti lipereke zidziwitso zenizeni zenizeni za coronavirus ndi miliri yamtsogolo - "ntchito yapadziko lonse" yolosera zomwe zidzachitike mliriwu.
Nthawi yotumiza: Jun-28-2022