{"id":1110,"date":"2015-06-05T11:47:06","date_gmt":"2015-06-05T09:47:06","guid":{"rendered":"http:\/\/www.zivotsesyndromem.cz\/?p=1110"},"modified":"2015-06-05T11:47:06","modified_gmt":"2015-06-05T09:47:06","slug":"cesta-za-novyma-usima-1-dil-rozhodnuti","status":"publish","type":"post","link":"https:\/\/www.zivotsesyndromem.cz\/?p=1110","title":{"rendered":"Cesta za nov\u00fdma u\u0161ima – 1. d\u00edl – ROZHODNUT\u00cd"},"content":{"rendered":"

Kv\u016fli Treacher Collins syndromu<\/strong><\/a> jsem j\u00e1 i Zuzka podstoupily v d\u011btstv\u00ed n\u011bkolik plastick\u00fdch operac\u00ed u\u0161\u00ed, proto\u017ee jsme se narodily jen se zbytky u\u0161n\u00edch lal\u016f\u010dk\u016f. Jednalo se o modelaci z chrupavky na\u0161eho \u017eebra. J\u00e1 jsem m\u011bla operovan\u00e9 ob\u011b u\u0161i v rozmez\u00ed od 10 let do sv\u00fdch 14 let, celkem asi 5 operac\u00ed v FN u sv. Anny v Brn\u011b. Zuzka si kv\u016fli pl\u00e1novan\u00e9mu sluchadlu BAHA<\/strong> (kter\u00e9ho se do\u010dkala a\u017e o mnoho let pozd\u011bji) nechala operovat jen lev\u00e9 ucho a to a\u017e ve sv\u00fdch 17ti letech ve dvouf\u00e1zov\u00e9 operaci v pra\u017esk\u00e9 vinohradsk\u00e9 nemocnici. Ani jedn\u00e9 z\u00a0n\u00e1s se u\u0161i moc nel\u00edbily (no, posu\u010fte samy).
\n<\/a>
\n<\/span><\/p>\n

\"ucho_prave\"\"ucho_leve\"<\/a><\/span><\/p>\n

Foto 1: Eva – prav\u00e9 ucho \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0Foto 2: Eva – lev\u00e9 ucho<\/p>\n

\"Zuzka_prave_ucho\"<\/a><\/span><\/p>\n

Foto 3: Zuzka – prav\u00e9 neoperovan\u00e9 ucho<\/span><\/p>\n

Dlouho jsme byly \u201espokojen\u00e9\u201c s t\u00edm, co jsme \u201edostaly\u201c. V\u011bt\u0161\u00edm estetick\u00fdm probl\u00e9mem bylo nevzhledn\u00e9 a nepraktick\u00e9 kapesn\u00ed sluchadlo<\/strong><\/a> v podob\u011b nepohodln\u00e9 \u010delenky s \u0161\u0148\u016frkou a krabi\u010dkou, kterou jsme musely nosit n\u011bkde na hrudi. B\u011bhem Z\u0160 jsme se dostaly k informac\u00edm o nov\u00e9m sluchadlu BAHA<\/strong>, kter\u00e9 sest\u00e1v\u00e1 z pouhopouh\u00e9 krabi\u010dky velikosti 2,5x2cm, kter\u00e1 je p\u0159ipevn\u011bna na titanov\u00fd \u0161roub v\u00a0oblasti za uchem. \u017d\u00e1dn\u00e1 krabi\u010dka na hrudi, \u017e\u00e1dn\u00e1 \u0161\u0148\u016frka. To byl n\u00e1\u0161 sen\u2026Ale sen se stal skute\u010dnost\u00ed a\u017e po roce 2008, kdy bylo sluchadlo BAHA a implantace titanov\u00e9ho \u0161roubu zavedeno do sazebn\u00edku zdravotn\u00ed poji\u0161\u0165ovny. V n\u00e1sleduj\u00edc\u00edm roce jsme spolu podstoupily implantaci titanov\u00e9ho \u0161roubu<\/strong> ve FN Motol a po p\u00e1r m\u011bs\u00edc\u00edch rekonvalescence jsme si mohly nasadit ono vysn\u011bn\u00e9 sluchadlo BAHA. U Zuzky se ale po p\u00e1r m\u011bs\u00edc\u00edch \u0161roub uvolnil a musela j\u00edt po necel\u00e9m roce na reoperaci. Na druh\u00fd pokus v\u0161ak dopadlo v\u0161e dob\u0159e a Zuzka se t\u011b\u0161\u00ed ze sluchadla BAHA stejn\u011b jako j\u00e1. Ob\u010das jsme se p\u0159i konverzaci zastavily nad t\u00e9matem \u201ena\u0161e u\u0161i\u201c a pomlouvaly ty na\u0161e doktory, \u017ee n\u00e1m neud\u011blali zrovna moc estetick\u00e9 u\u0161i. J\u00e1 jsem byla v\u00edc ak\u010dn\u011bj\u0161\u00ed a sledovala jsem na internetu, jak\u00e9 by mohly b\u00fdt mo\u017enosti vylep\u0161en\u00ed t\u011bch na\u0161ich u\u0161\u00ed.<\/span><\/p>\n

Prvn\u00ed informace o epit\u00e9z\u00e1ch u\u0161\u00ed<\/strong> jsem z\u00edskala v r\u00e1mci studia na zubn\u00edho technika asi p\u0159ed 6ti lety. V t\u00e9 dob\u011b jsem to hned za\u0159ekla, proto\u017ee jsem si \u0159ekla, \u017ee m\u00e1m cel\u00e9 u\u0161i, p\u0159ece si je nenech\u00e1m u\u0159\u00edznout ? V \u010cR se tyhle epit\u00e9zy vyr\u00e1b\u011bly jen ve v\u00fdjime\u010dn\u00fdch situac\u00edch, proto\u017ee poji\u0161\u0165ovny tyhle typy \u201epom\u016fcek\u201c nepropl\u00e1cely. Nap\u0159. pacient s n\u00e1dorov\u00fdm onemocn\u011bn\u00edm p\u0159i\u0161el o cel\u00fd nos. Aby nem\u011bl m\u00edsto nosu d\u00edru, mohl si nechat zhovotovit pr\u00e1v\u011b epit\u00e9zu nosu ze silikonu, kter\u00e1 se bu\u010f nalepila nebo p\u0159ipevnila na magnety. Cena t\u00e9to epit\u00e9zy se ale pohybovala v \u0159\u00e1dov\u011b des\u00edtk\u00e1ch tis\u00edc\u00edch korun, p\u0159i\u010dem\u017e se muselo po\u010d\u00edtat s t\u00edm, \u017ee p o p\u00e1r letech se mus\u00ed epit\u00e9za vyrobit znova podle opot\u0159eben\u00ed. Proto jsem to tedy nechala plavat. Po p\u00e1r letech jsem se k tomuto t\u00e9matu ale vr\u00e1tila na popud Ver\u010di, kter\u00e1 napsala sv\u016fj p\u0159\u00edb\u011bh<\/strong><\/a><\/span> o nov\u00fdch u\u0161\u00edch na str\u00e1nk\u00e1ch fr\u00fddeck\u00e9 protetiky<\/strong><\/a><\/span>. Koukala jsem jako bl\u00e1zen, kdy\u017e jsem zjistila, \u017ee jsou jedin\u00e1 protetick\u00e1 laborato\u0159 zam\u011b\u0159uj\u00edc\u00ed se na epit\u00e9zy nejen u\u0161\u00ed, ale i nosu, o\u010d\u00ed a jin\u00fdch \u010d\u00e1st\u00ed a \u017ee v\u0161e hrad\u00ed zdravotn\u00ed poji\u0161\u0165ovna. Hned jsem odkaz poslala Zuzce a za\u010daly jsme jen uva\u017eovat, co by, kdyby; Ver\u010du jsem samoz\u0159ejm\u011b tak\u00e9 vyzpov\u00eddala, jak to v\u0161echno prob\u00edh\u00e1 a jestli m\u00e1m j\u00e1 se sv\u00fdma u\u0161ima \u0161anci. Nakonec jsme se rozhodly se Zuzkou, \u017ee si ud\u011bl\u00e1me informa\u010dn\u00ed v\u00fdlet do Fr\u00fddku-M\u00edstku v kv\u011btnu 2014<\/strong>, kde mj. p\u0159ed p\u00e1r lety studovala moje sestra. Cht\u011bly jsme se Zuzkou ty um\u011bl\u00e9 u\u0161i osahat a zjistit v\u00edce informac\u00ed p\u0159\u00edmo od zdroje. V r\u00e1mci t\u00e9to n\u00e1v\u0161t\u011bvy p\u0159ijel i MUDr. Paciorek, kter\u00fd mus\u00ed opera\u010dn\u011b p\u0159ipravit plochu pro nov\u00e9 u\u0161i. Nejv\u00edce jsem se ob\u00e1vala pr\u00e1v\u011b toho, jestli poji\u0161\u0165ovna proplat\u00ed odstran\u011bn\u00ed ji\u017e operovan\u00fdch u\u0161\u00ed. To v\u0161ak byl nejmen\u0161\u00ed probl\u00e9m. Te\u010f u\u017e z\u00e1le\u017eelo jen na n\u00e1s. Neust\u00e1le toti\u017e do n\u00e1s \u201ehu\u010deli;, \u017ee si mus\u00edme uv\u011bdomit, \u017ee p\u0159ijdeme o ty na\u0161e \u201e\u017eiv\u00e9\u201c u\u0161i. Na druhou stranu potvrdili fakt, \u017ee spousta pacient\u016f, co m\u011bli plastiku u\u0161\u00ed, si je t\u00e9\u017e nechaly odstranit a rad\u011bji si nechali zhotovit esteticky kr\u00e1sn\u011bj\u0161\u00ed a p\u0159irozen\u011bj\u0161\u00ed silikonov\u00e9 u\u0161i. Po n\u00e1vratu z Fr\u00fddku-M\u00edstku dom\u016f jsme ka\u017ed\u00e1 konzultovala s rodinou. U n\u00e1s si to nikdo neum\u011bl p\u0159edstavit, tak m\u011bli rozporupln\u00e9 n\u00e1zory. Prarodi\u010de zast\u00e1vali n\u00e1zor, \u017ee si m\u00e1m nechat u\u0161i, kter\u00e9 m\u00e1m. V\u017edy\u0165 jsem tolik pro to \u201evytrp\u011bla\u201c, a te\u010f je \u201evyhod\u00edm\u201c? Ale je to moje rozhodnut\u00ed, tak a\u0165 si d\u011bl\u00e1m, co chci. Ostatn\u00ed to docela uv\u00edtali, i kdy\u017e nev\u011bd\u011bli, jak to bude vlastn\u011b vypadat, ale \u0159ekli pro\u010d ne.\u00a0Kone\u010dn\u011b si m\u016f\u017ee\u0161 vz\u00edt n\u00e1u\u0161nice a podle Ver\u010di se n\u00e1m zv\u00fd\u0161\u00ed sebev\u011bdom\u00ed raketovou rychlost\u00ed. Zuzka to m\u011bla doma obdobn\u00e9. Sama si tak\u00e9 nebyla jist\u00e1, zda do toho chce j\u00edt. Ale ob\u011b jsme byly v\u00edce \u010di m\u00e9n\u011b p\u0159esv\u011bd\u010den\u00e9, \u017ee do toho p\u016fjdeme. Poslaly jsme podklady pro poji\u0161\u0165ovnu a \u010dekaly na schv\u00e1len\u00ed. To trvalo cca 2 m\u011bs\u00edce. Je\u0161t\u011b po\u0159\u00e1d jsme se mohly rozhodnout, \u017ee to vzd\u00e1me. Jeliko\u017e bylo l\u00e9to a r\u016fzn\u00e9 pracovn\u00ed povinnosti n\u00e1s donutily si objednat term\u00edn na odstran\u011bn\u00ed u\u0161\u00ed a\u017e na \u00fanor 2015<\/strong>. Trochu se n\u00e1m to prot\u00e1hlo, ale aspo\u0148 jsme m\u011bly je\u0161t\u011b \u010das zm\u011bnit rozhodnut\u00ed, kter\u00e9 bylo nevratn\u00e9. V druh\u00e9m d\u00edle<\/strong><\/a> se dozv\u00edte, jak jsme se nakonec rozhodly a jak to bylo d\u00e1l.<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

… Read More<\/a><\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"gallery","meta":{"footnotes":""},"categories":[17],"tags":[],"class_list":["post-1110","post","type-post","status-publish","format-gallery","hentry","category-operace-a-zakroky","post_format-post-format-gallery","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-50"],"_links":{"self":[{"href":"https:\/\/www.zivotsesyndromem.cz\/index.php?rest_route=\/wp\/v2\/posts\/1110","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.zivotsesyndromem.cz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.zivotsesyndromem.cz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.zivotsesyndromem.cz\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.zivotsesyndromem.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=1110"}],"version-history":[{"count":0,"href":"https:\/\/www.zivotsesyndromem.cz\/index.php?rest_route=\/wp\/v2\/posts\/1110\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.zivotsesyndromem.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=1110"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.zivotsesyndromem.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=1110"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.zivotsesyndromem.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=1110"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}