\u017divot, kter\u00fd vedla 27let\u00e1 Hanka d\u0159\u00edve, skon\u010dil. V roce 2022 m\u011bla \u010derstv\u011b po st\u00e1tnic\u00edch, ve voln\u00e9m \u010dase se v\u011bnovala focen\u00ed a pro radost se u\u010dila hr\u00e1t na kytaru. Pak ale p\u0159i\u0161el covid-19, ze kter\u00e9ho se ji\u017e nezotavila. Kv\u016fli chronick\u00e9mu \u00fanavov\u00e9mu syndromu, kter\u00fd se po prod\u011bl\u00e1n\u00ed covidu rozvinul, jen le\u017e\u00ed v posteli. Hodiny sb\u00edr\u00e1 s\u00edly na to, aby ud\u011blala p\u00e1r krok\u016f. L\u00e9ka\u0159i nev\u00ed, jak j\u00ed pomoci.<\/p>\n\n\n\n
Hanka m\u011bla mnoho z\u00e1jm\u016f, kter\u00fdm se aktivn\u011b v\u011bnovala. Mimo jin\u00e9 se naplno projevovalo jej\u00ed um\u011bleck\u00e9 nad\u00e1n\u00ed. Nyn\u00ed je v\u0161ak jej\u00ed \u017eivot hodn\u011b pozastaven\u00fd kv\u016fli nemoci.<\/p>\n\n\n\n
V \u010dervnu roku 2022 prod\u011blala mlad\u00e1 \u017eena covid. Ten se postupn\u011b rozvinul v chronick\u00e9 onemocn\u011bn\u00ed, kter\u00e9 j\u00ed nedovol\u00ed vst\u00e1t z postele, ani se o sebe postarat – takzvan\u00fd long covid. Virus napadl Han\u010din mozek, imunitn\u00ed bu\u0148ky, nervov\u00fd i kardiovaskul\u00e1rn\u00ed syst\u00e9m a rozvinul se u n\u00ed v chronick\u00fd \u00fanavov\u00fd syndrom ME\/CFS (viz n\u00ed\u017ee, pozn. red.).<\/p>\n\n\n\n
Nemoc zp\u016fsobuje absolutn\u00ed vy\u010derp\u00e1n\u00ed. Ka\u017ed\u00e1 b\u011b\u017en\u00e1 aktivita je pro Hanku nadlidsk\u00fdm \u00fakonem. D\u0159\u00edve nadan\u00e1 um\u011blkyn\u011b tak ztratila t\u00e9m\u011b\u0159 v\u0161e a \u017eivot, jak\u00fd znala a kter\u00fd milovala, skon\u010dil. \u0158\u00edk\u00e1, \u017ee kv\u016fli jedin\u00e9 covidov\u00e9 infekci \u017eije v permanentn\u00edm lockdownu a jen le\u017e\u00ed jako polomrtv\u00e1.<\/p>\n\n\n\n
\u017divot s long covidem<\/p>\n\n\n\n
Na prvn\u00ed pohled vypad\u00e1 Hanka P. k\u0159ehce a zraniteln\u011b. Uvnit\u0159 se ale skr\u00fdv\u00e1 \u0161t\u011bdr\u00e1 a neuv\u011b\u0159iteln\u011b siln\u00e1 osobnost, kter\u00e1 se v\u017edy dok\u00e1zala se v\u0161\u00edm state\u010dn\u011b poprat a vyrovnat. Na za\u010d\u00e1tku jej\u00edho mlad\u00e9ho \u017eivota ji v\u0161ak dopadlo chronick\u00e9 onemocn\u011bn\u00ed, se kter\u00fdm si v tuto chv\u00edli nev\u011bd\u00ed rady ani l\u00e9ka\u0159i.<\/p>\n\n\n\n
Nikdo j\u00ed nedok\u00e1\u017ee \u0159\u00edct, zda to bude n\u011bkdy lep\u0161\u00ed, nebo se jej\u00ed stav bude nad\u00e1le jen zhor\u0161ovat. Se sv\u00fdm onemocn\u011bn\u00edm tak \u017eena bojuje ji\u017e druh\u00fdm rokem.<\/p>\n\n\n\n
\u201eHana m\u00e1 chronickou nemoc, kter\u00e1 se rozvinula po n\u00e1kaze covidem v \u010dervnu 2022. Takzvan\u00fd long covid. Rozvinul se u n\u00ed ale i chronick\u00fd \u00fanavov\u00fd syndrom ME a dal\u0161\u00ed nemoci. M\u00e1 napaden\u00e9 b\u00edl\u00e9 krvinky, imunitn\u00ed deficit a jak\u00e1koliv n\u00e1kaza je pro ni extr\u00e9mn\u00edm ohro\u017een\u00edm. Proto mus\u00ed tr\u00e1vit v\u011bt\u0161inu \u010dasu v karant\u00e9n\u011b, t\u00e9m\u011b\u0159 upout\u00e1na na l\u016f\u017eko,\u201c popisuje Han\u010din partner Adam, kter\u00fd je z\u00e1rove\u0148 zakladatelem sb\u00edrky na Donio.<\/p>\n\n\n\n
C\u00edlov\u00e1 \u010d\u00e1stka (480 tis\u00edc korun) ji\u017e byla sice vybr\u00e1na, ale p\u0159isp\u00edvat lze d\u00e1l. Vybran\u00e9 pen\u00edze toti\u017e pokryj\u00ed pouze ro\u010dn\u00ed p\u00e9\u010di o Hanku.<\/p>\n\n\n\n
C\u00edt\u00ed se jako poh\u0159ben\u00e1 za\u017eiva<\/p>\n\n\n\n
Sebemen\u0161\u00ed n\u00e1maha je pro Hanku rizikov\u00e1. Hl\u00edd\u00e1 si srde\u010dn\u00ed tep a dal\u0161\u00ed t\u011blesn\u00e9 ukazatele. Pom\u00e1h\u00e1 j\u00ed to odhadnout, jestli je jej\u00ed t\u011blo p\u0159\u00edli\u0161 vy\u010derpan\u00e9 a je tedy bezpe\u010dn\u011bj\u0161\u00ed rad\u011bji ani nevst\u00e1vat. P\u0159ecen\u011bn\u00ed sil toti\u017e m\u016f\u017ee znamenat trval\u00e9 zhor\u0161en\u00ed jej\u00edho stavu.<\/p>\n\n\n\n
Mlad\u00e1 \u017eena sv\u016fj domov opou\u0161t\u00ed jen kv\u016fli nutn\u00fdm n\u00e1v\u0161t\u011bv\u00e1m l\u00e9ka\u0159\u016f. V\u017edy ji v\u0161ak mus\u00ed n\u011bkdo odv\u00e9zt a k l\u00e9ka\u0159i doprovodit.<\/p>\n\n\n\n
\u201eNemoc je krut\u00e1 v tom, \u017ee t\u011blu znemo\u017e\u0148uje zregenerovat po jak\u00e9koliv z\u00e1t\u011b\u017ei. Ve v\u0161ech aktivit\u00e1ch se mus\u00ed Hanka p\u0159\u00edsn\u011b hl\u00eddat, jinak by se skokov\u011b propadla je\u0161t\u011b do hor\u0161\u00edho stavu,\u201c vysv\u011btluje Han\u010din p\u0159\u00edtel Adam.<\/p>\n\n\n\n
Na denn\u00edm po\u0159\u00e1dku jsou u Hanky hore\u010dnat\u00e9 stavy, bolesti kloub\u016f, probl\u00e9my s krevn\u00edm ob\u011bhem, i probl\u00e9my se vst\u00e1v\u00e1n\u00edm. \u201eMysl\u00edm na to, jak jsou ta r\u00e1na hnusn\u00e1. Jak je to vlastn\u011b nep\u0159\u00edjemn\u00e9 vzbudit se, proto\u017ee t\u011blo je tak o\u0161kliv\u011b ztuhl\u00e9 a bolav\u00e9. P\u00e1l\u00ed m\u011b klouby a v\u0161echno je ve mn\u011b takov\u00e9 zbit\u00e9. Jako kdyby m\u011b n\u011bkdo zml\u00e1til a dostala jsem k tomu je\u0161t\u011b ch\u0159ipku. A takov\u00e9 je ka\u017ed\u00e9 r\u00e1no s touhle nemoc\u00ed,\u201c hovo\u0159\u00ed t\u011b\u017ece a slab\u00fdm hlasem Hanka ve sv\u00e9m audio den\u00edku s n\u00e1zvem Permanentn\u00ed lockdown.<\/p>\n\n\n\n
L\u00e9ka\u0159i j\u00ed neum\u00ed pomoci<\/p>\n\n\n\n
Postcovidov\u00fd syndrom v podob\u011b ME\/CFS je komplikovan\u00fdm onemocn\u011bn\u00edm bez jednoduch\u00e9 diagn\u00f3zy a spolehliv\u00e9ho l\u00e9ku \u010di dopl\u0148ku k l\u00e9\u010db\u011b.<\/p>\n\n\n\n
\u201eNem\u00e1 smysl br\u00e1t produkty, jako jsou dopl\u0148ky \u017eeleza a vysok\u00e9 d\u00e1vky vitaminu C nebo jin\u00fdch vitamin\u016f. A\u010dkoli existuj\u00ed povzbudiv\u00e9 \u00fadaje, \u017ee n\u011bkter\u00e1 antivirov\u00e1 a imunosupresivn\u00ed l\u00e9\u010diva jsou prosp\u011b\u0161n\u00e1 pro hospitalizovan\u00e9 pacienty b\u011bhem akutn\u00ed infek\u010dn\u00ed f\u00e1ze covidu-19, v sou\u010dasnosti neexistuj\u00ed d\u016fkazy o tom, \u017ee by mohly b\u00fdt u\u017eite\u010dn\u00e9 p\u0159i l\u00e9\u010db\u011b postcovidov\u00fdch nebo longcovidov\u00fdch syndrom\u016f,\u201c tvrd\u00ed b\u00fdval\u00fd l\u00e9ka\u0159sk\u00fd \u0159editel Asociace pro ME Dr. Charles Shepherd v publikaci Postcovidov\u00e1 \u00fanava.<\/p>\n\n\n\n
Hanka sama k tomu \u0159\u00edk\u00e1: \u201eN\u011bkter\u00e9 imunoterapie, monoklon\u00e1ln\u00ed protil\u00e1tky, hyperbarick\u00e1 oxygenoterapie, kombinovan\u00e9 terapie s antivirotiky, antikoagulanty a dal\u0161\u00edmi l\u00e9ky by mohly pomoci. Je ale pravda, \u017ee je to v\u0161echno po\u0159\u00e1d v rovin\u011b experimentu. Zat\u00edm nen\u00ed nic jist\u00e9ho, na co by se dalo spolehnout.\u201c<\/p>\n\n\n\n
Odkazuje v\u0161ak v t\u00e9to souvislosti na \u0161v\u00fdcarskou neurolo\u017eku Maju Strasser, kter\u00e1 varuje p\u0159ed \u201eterapeutick\u00fdm nihilismem\u201c. Jde o p\u0159\u00edstup, kdy l\u00e9ka\u0159i nechaj\u00ed pacienty \u010dekat a trp\u011bt des\u00edtky let bez ochoty nab\u00eddnout jakoukoliv, by\u0165 experiment\u00e1ln\u00ed l\u00e9\u010dbu.<\/p>\n\n\n\n
Riskantn\u00ed experiment\u00e1ln\u00ed l\u00e9\u010dba<\/p>\n\n\n\n
Kv\u016fli onemocn\u011bn\u00ed se Hanka musela vzd\u00e1t samostatn\u00e9ho \u017eivota a vr\u00e1tit se zp\u011bt do sv\u00e9ho d\u011btsk\u00e9ho pokoj\u00ed\u010dku, kde o ni pe\u010duje jej\u00ed maminka. Bez pomoci by sv\u016fj stav jen st\u011b\u017e\u00ed zvl\u00e1dala. Nemoci se pr\u00fd u\u017e z\u0159ejm\u011b nezbav\u00ed. Jedn\u00e1 se o chronickou chorobu, na n\u00ed\u017e dodnes neexistuje l\u00e9\u010dba.<\/p>\n\n\n\n
\u201eV\u00fdzkumy jsou v za\u010d\u00e1tc\u00edch a podfinancovan\u00e9, l\u00e9ka\u0159i si nev\u00ed rady. L\u00e9ky existuj\u00ed jen na ti\u0161en\u00ed symptom\u016f, ale poji\u0161\u0165ovna nen\u00ed ochotn\u00e1 je hradit. Hani\u010dce tak nezb\u00fdv\u00e1, ne\u017e si je platit z vlastn\u00edho. Sama se mus\u00ed vzd\u011bl\u00e1vat v tom, co by j\u00ed mohlo pomoci a hl\u00e1sit se do v\u011bdeck\u00fdch experiment\u016f. Ty prob\u00edhaj\u00ed v zahrani\u010d\u00ed, jsou riskantn\u00ed a n\u00e1kladn\u00e9, ale aspo\u0148 j\u00ed d\u00e1vaj\u00ed nad\u011bji,\u201c \u0159\u00edk\u00e1 p\u0159\u00edtel Adam.<\/p>\n\n\n\n
Hance by v\u0161ak pro za\u010d\u00e1tek sta\u010dilo alespo\u0148 to, aby lid\u00e9 p\u0159estali tuto nemoc p\u0159ehl\u00ed\u017eet a d\u011blat, \u017ee neexistuje.<\/p>\n\n\n\n
\u201eKdyby v\u011bt\u0161ina lid\u00ed v\u011bd\u011bla, o co jde, tak n\u00e1m to hodn\u011b pom\u016f\u017ee. Tak, jako v\u00edme o jin\u00fdch nemocech, \u017ee jsou tu, a tu\u0161\u00edme n\u011bjak\u00e1 jejich specifika, tak ME mezi n\u011b zat\u00edm bohu\u017eel nepat\u0159\u00ed. Ka\u017ed\u00fd kr\u016f\u010dek, kter\u00fdm n\u00e1m n\u011bkdo vykro\u010d\u00ed naproti, se rozhodn\u011b po\u010d\u00edt\u00e1,\u201c p\u0159eje si mlad\u00e1 \u017eena, pro kterou je mnohdy n\u00e1ro\u010dn\u00e9 jen vst\u00e1t a uj\u00edt p\u00e1r krok\u016f.<\/p>\n\n\n\n
Kdy\u017e bude m\u00edt dostatek sil, jednou by pr\u00fd r\u00e1da \u0161\u00ed\u0159ila osv\u011btu o tomto onemocn\u011bn\u00ed a pom\u00e1hala dal\u0161\u00edm nemocn\u00fdm lidem.<\/p>\n\n\n\n
Rok \u017eivota za 480 tis\u00edc<\/p>\n\n\n\n
Velk\u00fdm probl\u00e9mem je, \u017ee Han\u010dina nemoc je spojena s vysok\u00fdmi n\u00e1klady. Ro\u010dn\u011b pot\u0159ebuje na l\u00e9\u010dbu p\u0159es 480 tis\u00edc korun. Za n\u011b pak zaplat\u00ed v\u0161e, co odm\u00edt\u00e1 uhradit poji\u0161\u0165ovna.<\/p>\n\n\n\n
Pat\u0159\u00ed sem nap\u0159\u00edklad: n\u011bkter\u00e9 l\u00e9ky, konzultace se soukrom\u00fdmi l\u00e9ka\u0159i, infuzn\u00ed terapie, speci\u00e1ln\u00ed v\u00fd\u017eiva a dopl\u0148ky, kter\u00e9 pom\u00e1haj\u00ed stabilizovat stav, soukrom\u00e9 laboratorn\u00ed testy, v\u00fddaje na cestu za specialisty do zahrani\u010d\u00ed (Hanka m\u016f\u017ee cestovat jen vle\u017ee, pozn. red.), pom\u016fcky spojen\u00e9 s posti\u017een\u00edm, asisten\u010dn\u00ed slu\u017eba, fyzioterapie \u010di psychoterapie.<\/p>\n\n\n\n
\u010c\u00edm v\u00edce ve sb\u00edrce Hanka vybere, t\u00edm d\u00e9le bude schopna financovat svou l\u00e9\u010dbu. I nad\u00e1le v\u0161ak chce hledat dlouhodob\u00e9 \u0159e\u0161en\u00ed.<\/p>\n\n\n\n
\u201eBohu\u017eel, neum\u00edme Han\u011b pomoci k \u00fapln\u00e9mu uzdraven\u00ed. L\u00e9\u010dba zat\u00edm neexistuje, progn\u00f3za je nejist\u00e1. M\u016f\u017eeme j\u00ed ale spole\u010dn\u00fdmi silami pomoci k d\u016fstojn\u011bj\u0161\u00edmu \u017eivotu. A t\u0159eba se d\u00edky tomu do\u010dk\u00e1 doby, kdy budeme v\u011bd\u011bt, jak jej\u00ed nemoc vyl\u00e9\u010dit,\u201c uzav\u00edr\u00e1 t\u00e9ma p\u0159\u00edtel Adam. P\u0159isp\u011bt v r\u00e1mci sb\u00edrky \u201eNad\u011bje na \u017eivot pro Hani\u010dku\u201c na Doniu m\u016f\u017eete ZDE: https:\/\/www.donio.cz\/nadeje-na-zivot-pro-hanicku<\/a><\/p>\n\n\n\n Postcovidov\u00fd syndrom v podob\u011b ME\/CFS<\/p>\n\n\n\n \u201eMyalgick\u00e1 encefalomyelitida (ME) je v\u00e1\u017en\u00e9, chronick\u00e9, komplexn\u00ed onemocn\u011bn\u00ed, kter\u00e9 \u010dasto v\u00fdrazn\u011b omezuje aktivity posti\u017een\u00fdch pacient\u016f. Ve sv\u00e9 nejt\u011b\u017e\u0161\u00ed form\u011b m\u016f\u017ee zni\u010dit \u017eivoty t\u011bch, kter\u00e9 postihne,\u201c tvrd\u00ed o nemoci \u010desk\u00fd zdroj informac\u00ed o ME\/CFS Klub pacient\u016f s myalgickou encefalomyelitidou syndromem chronick\u00e9 \u00fanavy.<\/p>\n\n\n\n Nej\u010dast\u011bji se rozvine po prod\u011blan\u00e9m infek\u010dn\u00edm onemocn\u011bn\u00ed a jej\u00ed p\u0159\u00edznaky p\u0159etrv\u00e1vaj\u00ed roky. V\u011bt\u0161ina pacient\u016f se v\u0161ak nikdy nevr\u00e1t\u00ed na stejnou \u00farove\u0148 zdrav\u00ed a celkov\u00e9ho fungov\u00e1n\u00ed, na kter\u00e9 byli zvykl\u00ed p\u0159ed propuknut\u00edm nemoci.<\/p>\n\n\n\n Kate\u0159ina N\u011bmcov\u00e1<\/p>\n\n\n\n \u010ceskobud\u011bjovick\u00fd den\u00edk<\/p>\n\n\n\n https:\/\/ceskobudejovicky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" \u017divot, kter\u00fd vedla 27let\u00e1 Hanka d\u0159\u00edve, skon\u010dil. V roce 2022 m\u011bla \u010derstv\u011b po st\u00e1tnic\u00edch, ve voln\u00e9m \u010dase se v\u011bnovala focen\u00ed a pro radost se u\u010dila […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":13998,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-47957","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/47957","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=47957"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/47957\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/13998"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=47957"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=47957"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=47957"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}