{"id":789,"date":"2007-10-03T11:49:11","date_gmt":"2007-10-03T09:49:11","guid":{"rendered":"http:\/\/slanedeti.sk\/cms\/ja-a-cf-2\/200710"},"modified":"2014-02-09T16:31:52","modified_gmt":"2014-02-09T15:31:52","slug":"ja-a-cysticka-fibroza","status":"publish","type":"post","link":"https:\/\/slanedeti.sk\/cms\/ja-a-cysticka-fibroza\/789","title":{"rendered":"Ja a cystick\u00e1 fibr\u00f3za"},"content":{"rendered":"<p>Je \u0161tvrtok poobede a do nemocni\u010dnej izby kr\u00e1sne svieti febru\u00e1rov\u00e9 slnko. Pr\u00e1ve som sa narodila&#8230; kuk\u00e1m na nepoznan\u00fd svet a v\u0161etk\u00e9mu nov\u00e9mu sa \u010dudujem ako kr\u00e1sne zdrav\u00e9 die\u0165a.<br \/>\nDni prib\u00fadaj\u00fa, je mi tu fakt dobre, m\u00e1m okolo seba celkom fajn \u013eud\u00ed, ale &#8230; za\u010d\u00ednaj\u00fa pr\u00edli\u0161 skoro moje zdravotn\u00e9 \u0165a\u017ekosti. St\u00e1le viac a viac ma bol\u00ed bru\u0161ko, m\u00e1m \u00faplne nani\u010d stolicu a ke\u010f ma bozk\u00e1va moja maminka, vid\u00edm, \u017ee je tro\u0161ku neist\u00e1. C\u00edti pr\u00edli\u0161 slan\u00fa chu\u0165 na per\u00e1ch. Je to z m\u00f4jho potu&#8230;<\/p>\n<p>A nastal ak\u00fdsi koloto\u010d&#8230; U\u017e m\u00e1m dva r\u00f4\u010dky a moji obaja rodi\u010dia so mnou behaj\u00fa od doktora k doktorovi. A t\u00ed maj\u00fa podozrenie na nejak\u00fa chorobu no st\u00e1le presne nevedia, \u010do mi v skuto\u010dnosti je. Urobili mi testy, ktor\u00e9 sa naz\u00fdvaj\u00fa chloridy &#8211; ak\u00fd slan\u00fd pot m\u00e1m. V\u00fdsledky uk\u00e1zali ve\u013emi vysok\u00e9 hodnoty &#8211; \u010do znamen\u00e1 prv\u00e9 v\u00e1\u017ene podozrenie na chorobu cystick\u00e1 fibr\u00f3za. Lek\u00e1ri z Liptovsk\u00e9ho Mikul\u00e1\u0161a ma spolu s mojimi rodi\u010dmi poslali za odborn\u00edkmi do Bratislavy. Po dlh\u0161om rozhovore s jedn\u00fdm lek\u00e1rom na CF moji rodi\u010dia vy\u0161li z ordin\u00e1cie s my\u0161lienkou \u017ee je to detsk\u00e1 choroba a \u017ee sa v\u00f4bec nedo\u017eijem dospel\u00e9ho veku. Viem, \u017ee boli vystra\u0161en\u00ed a hrozne smutn\u00ed. Tu\u0161ila som, \u017ee sa stalo nie\u010do ve\u013emi zl\u00e9 a vtedy som sa im sna\u017eila sp\u00f4sobova\u0165 len rados\u0165 spolu s moj\u00edm mal\u00fdm bra\u010dekom, ktor\u00fd sa pr\u00e1ve narodil. No namiesto toho aby si s nami u\u017e\u00edvali spolo\u010dn\u00e9 chv\u00edle, sa len tr\u00e1pili nad t\u00fdm, \u010do im bolo povedan\u00e9. Ke\u010f\u017ee je cystick\u00e1 fibr\u00f3za genetick\u00e1 choroba, choroba ktor\u00e1 sa nem\u00f4\u017ee z\u00edska\u0165 po\u010das \u017eivota, urobili potn\u00e9 testy- chloridy aj m\u00f4jmu bra\u010dekovi. Vy\u0161li tak isto vysok\u00e9. Moji obaja rodi\u010dia \u017eili v tom \u017ee maj\u00fa deti, ktor\u00e9 trpia smrte\u013enou chorobou a neost\u00e1va im ve\u013ea \u010dasu. Po nejakom \u010dase sa uk\u00e1zalo \u017ee lek\u00e1ri urobili chybu a brat je na\u0161\u0165astie \u00faplne zdrav\u00e9 die\u0165a.<\/p>\n<p>Odborn\u00edci v Bratislave spomenuli \u017ee s\u00fa nejak\u00e9 inhala\u010dn\u00e9 prostriedky a lieky, ktor\u00e9 pom\u00e1haj\u00fa zlep\u0161i\u0165 \u017eivot takto chor\u00fdm \u013eudom. No ni\u010d bli\u017e\u0161ie sa moji rodi\u010dia nedozvedeli. Mamina sa dlho tr\u00e1pila a nakoniec si s ocinom povedali, \u017ee urobia v\u0161etko pre to, aby som pre\u017eila plnohodnotn\u00fd a ni\u010d\u00edm neobmedzovan\u00fd \u017eivot. Zobrali ma ako mal\u00e9 \u0161tvorro\u010dn\u00e9 die\u0165a do Prahy za \u0161pecialistkou na cystick\u00fa fibr\u00f3zu. Pam\u00e4t\u00e1m si na t\u00fa pan\u00ed doktorku. Bola mil\u00e1 a c\u00edtila som, \u017ee mi pom\u00f4\u017ee. Poradila n\u00e1m mnoho cvi\u010den\u00ed, rehabilit\u00e1cie, inhal\u00e1cie, prostriedky a pom\u00f4cky, ktor\u00fdmi sa d\u00e1 pom\u00f4c\u0165 de\u0165om ako som ja. Uk\u00e1zala n\u00e1m aj dospel\u00fdch pacientov s CF a t\u00fdm sa \u00faplne zmenil postoj mojich rodi\u010dov k tejto chorobe. Za\u010dali sme cel\u00e1 rodina bojova\u0165. A nebolo to v\u017edy \u013eahk\u00e9. Bolo aj mno\u017estvo h\u00e1dok, obmedzen\u00ed a najm\u00e4 dlh\u00e9 hodiny cvi\u010denia a rehabilit\u00e1cie. Dennodenne som sa musela odhlie\u0148ova\u0165, aby som mohla v\u00f4bec d\u00fdcha\u0165, cvi\u010di\u0165 fyzick\u00e9 cviky, aby som vl\u00e1dala ako ostatn\u00e9 deti. Roky plynuli a ja som sa dr\u017eala st\u00e1le na dobrej zdravotnej \u00farovni. Boli ale aj t\u00fd\u017edne kedy som v noci nemohla ani na chv\u00ed\u013eu zaspa\u0165 kv\u00f4li neut\u00edchaj\u00facemu ka\u0161\u013eu. Vtedy som musela dost\u00e1va\u0165 \u0165a\u017ek\u00e9 lieky priamo do \u017eily a le\u017ea\u0165 v nemocnici. K tejto chorobe patria tak isto probl\u00e9my s tr\u00e1ven\u00edm, preto\u017ee v\u0161etky org\u00e1ny sa postupne zahlie\u0148uj\u00fa.<\/p>\n<p>Za\u010dala som chodi\u0165 do prvej triedy s \u00faplne norm\u00e1lnymi de\u0165mi. V\u0161etko som celkom dobre zvl\u00e1dala, najm\u00e4 u\u010denie. To bolo v pohode \u2013 na to cystick\u00e1 fibr\u00f3za nem\u00e1 \u017eiaden vplyv. Hor\u0161ie to bolo s \u010dasom. Nov\u00fd denn\u00fd re\u017eim, v\u017edy som musela ove\u013ea sk\u00f4r vst\u00e1va\u0165, aby som stihla pr\u00eds\u0165 na \u010das do \u0161koly a mysl\u00edm, \u017ee m\u00e1lokedy som mala \u010das len tak ni\u010d nerobi\u0165. Ke\u010f som nerehabilitovala, tak som p\u00edsala \u00falohy, alebo ly\u017eovala, alebo sme s bratom bicyklovali. St\u00e1le sme nie\u010do robili a mamina mi vysvet\u013eovala, \u017ee budem st\u00e1le m\u00f4c\u0165 robi\u0165 to, \u010do m\u00e1m rada, len ak sa nebudem \u013eutova\u0165. A ja som jej uverila&#8230;<\/p>\n<p>Ako prv\u00e1\u010dka som za\u010dala ma\u0165 probl\u00e9my s nosov\u00fdmi dutinami, lebo tie sa tak isto zahlie\u0148uj\u00fa. Uk\u00e1zalo sa \u017ee mus\u00edm \u00eds\u0165 na \u0165a\u017ek\u00fa oper\u00e1ciu polypov v nosov\u00fdch dutin\u00e1ch. Do roka po oper\u00e1cii sa mi objavili op\u00e4\u0165 a oper\u00e1ciu som absolvovala druh\u00fd kr\u00e1t. Po \u010dase sa objavili znova ale na \u010fal\u0161iu oper\u00e1ciu som u\u017e ne\u0161la. Bola to nesmierne ve\u013ek\u00e1 z\u00e1\u0165a\u017e na m\u00f4j detsk\u00fd organizmus. Dohodli sme sa, \u017ee urob\u00edme v\u0161etko pre to, aby som u\u017e na oper\u00e1ciu nemusela \u00eds\u0165 a za\u010dali sme h\u013eada\u0165 in\u00e9 cesty. A\u017e teraz si uvedomujem, \u017ee to bolo \u010dasto z\u00e1bavn\u00e9&#8230; Bublinkovanie do vody, f\u00fakanie do papierikov, vrtuliek, bublifukov&#8230;<\/p>\n<p>\u010casom som sa za\u010dala venova\u0165 hre na flautu a saxof\u00f3n. U\u017e od \u00fatleho detstva som sa venovala \u0161portu a d\u00fdchaniam r\u00f4zneho typu, ktor\u00e9 mi pom\u00e1hali zlep\u0161ova\u0165 m\u00f4j zdravotn\u00fd stav. Chorobu cystick\u00e1 fibr\u00f3za beriem od za\u010diatku ako jednu ve\u013ek\u00fa \u017eivotn\u00fa sk\u00fa\u0161ku a v\u00fdzvu. Vediem s \u0148ou u\u017e sedemn\u00e1s\u0165ro\u010dn\u00fd \u00faspe\u0161n\u00fd boj. Zvl\u00e1dam to najm\u00e4 v\u010faka mojej skvelej mamine, ch\u00e1pavej rodine, \u00fa\u017easn\u00fdm priate\u013eom a v\u0161etk\u00fdm bl\u00edzkym \u013eu\u010fom, ktor\u00fdch okolo seba m\u00e1m. D\u00fafam \u017ee pre\u017eijem cel\u00fd \u017eivot aspo\u0148 tak ako doteraz aj ke\u010f je to neust\u00e1la pr\u00e1ca a boj o vlastn\u00fd dych a \u017eivot.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Je &scaron;tvrtok poobede a do nemocni&#269;nej izby kr&aacute;sne svieti febru&aacute;rov&eacute; slnko. Pr&aacute;ve som sa narodila&hellip; kuk&aacute;m na nepoznan&yacute; svet a v&scaron;etk&eacute;mu nov&eacute;mu sa &#269;udujem ako kr&aacute;sne zdrav&eacute; die&#357;a. Dni prib&uacute;daj&uacute;, je mi tu fakt dobre, m&aacute;m okolo seba celkom fajn &hellip; <a href=\"https:\/\/slanedeti.sk\/cms\/ja-a-cysticka-fibroza\/789\">Continued<\/a><\/p>\n","protected":false},"author":4,"featured_media":1600,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"kt_blocks_editor_width":"","footnotes":""},"categories":[250],"tags":[],"class_list":["post-789","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zivot-s-cystickou-fibrozou"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Ja a cystick\u00e1 fibr\u00f3za - Slan\u00e9 deti<\/title>\n<meta name=\"description\" content=\"Skuto\u010dn\u00fd pr\u00edbeh mladej \u017eeny, ktorej v detskom veku diagnostikovali cystick\u00fa fibr\u00f3zu.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/slanedeti.sk\/cms\/ja-a-cysticka-fibroza\/789\" \/>\n<meta property=\"og:locale\" content=\"sk_SK\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Ja a cystick\u00e1 fibr\u00f3za - 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