{"id":1398,"date":"2018-05-04T17:11:19","date_gmt":"2018-05-04T15:11:19","guid":{"rendered":"http:\/\/klubcf.sk\/?p=1398"},"modified":"2018-05-04T17:11:19","modified_gmt":"2018-05-04T15:11:19","slug":"vdacni-za-kazdy-nadych","status":"publish","type":"post","link":"https:\/\/klubcf.sk\/index.php\/2018\/05\/04\/vdacni-za-kazdy-nadych\/","title":{"rendered":"V\u010fa\u010dn\u00ed za ka\u017ed\u00fd n\u00e1dych"},"content":{"rendered":"

\u201eV\u0161etk\u00fdm novorodencom na Slovensku sa robia testy na cystick\u00fa fibr\u00f3zu (CF) hne\u010f po naroden\u00ed. N\u00e1s v\u0161ak nikto neinformoval, \u017ee Bianka m\u00e1 tieto v\u00fdsledky zl\u00e9.\u201c<\/b><\/span><\/span><\/p>\n

M\u00e1m 31 rokov, l\u00e1sku svojho \u017eivota, man\u017eela Vladka a dve kr\u00e1sne deti\u010dky. P\u00e4\u0165ro\u010dn\u00e9ho syna Vladka a Bianku, ktor\u00e1 m\u00e1 2 roky. Tehotenstv\u00e1 neboli \u013eahk\u00e9, trpela som siln\u00fdmi nevo\u013enos\u0165ami skoro a\u017e do 30-teho t\u00fd\u017ed\u0148a a bola som ve\u013emi precitliven\u00e1 \"\"na v\u00f4ne. <\/span><\/span><\/span><\/p>\n

Po\u010das prv\u00e9ho tehotenstva ma v 30. t\u00fd\u017edni hospitalizovali kv\u00f4li hrozbe pred\u010dasn\u00e9ho p\u00f4rodu. Nakoniec som syn\u010deka Vladka porodila v 40. t\u00fd\u017edni , presne v de\u0148 term\u00ednu, 22. apr\u00edla 2013.<\/span><\/span><\/p>\n

Ani druh\u00e1 gravidita nebola bez probl\u00e9mov. Bola som hospitalizovan\u00e1 u\u017e na za\u010diatku, v 7. t\u00fd\u017edni, z d\u00f4vodu krv\u00e1cania, ktor\u00e9 s\u00faviselo s hemat\u00f3mom. Na\u0161\u0165astie, tehotenstvo sa podarilo udr\u017ea\u0165, nevo\u013enosti v\u0161ak boli ve\u013emi intenz\u00edvne. Porodila som v 40. t\u00fd\u017edni, de\u0148 po term\u00edne, 23. apr\u00edla 2016. P\u00f4rod prebehol ve\u013emi r\u00fdchlo a bez komplik\u00e1ci\u00ed. Po naroden\u00ed bola Bianka \u010dul\u00e1, v\u0161etky v\u00fdsledky boli v poriadku. Ni\u010d nenasved\u010dovalo tomu, \u017ee by mala ma\u0165 nejak\u00e9 zdravotn\u00e9 \u0165a\u017ekosti. <\/span><\/span><\/p>\n

Hemangi\u00f3m bol d\u00f4vodom na mno\u017estvo vy\u0161etren\u00ed<\/b><\/span><\/span><\/span><\/p>\n

V prv\u00fdch t\u00fd\u017ed\u0148och bola Bianka ve\u013emi spokojn\u00e9 b\u00e1b\u00e4tko. V\u0161etko prebiehalo v poriadku. Pomali\u010dky priberala. Ke\u010f mala p\u00e4\u0165 mesiacov, za\u010dali sme rie\u0161i\u0165 hemangi\u00f3m, ktor\u00fd m\u00e1 na bru\u0161ku. Je to znamienko, ktor\u00e9 mus\u00ed by\u0165 sledovan\u00e9 v chirurgickej ambulancii. Bianka m\u00e1 typ hemangi\u00f3mu, ktor\u00fd by sa mal do \u0161iestich rokov s\u00e1m vstreba\u0165. Mus\u00edme ale d\u00e1va\u0165 pozor na to, aby sme ho neroz\u0161krabli, preto\u017ee by sa mohol rozkrv\u00e1ca\u0165. Bianka podst\u00fapila aj sono mozgu, vy\u0161etrenie v o\u010dnej ambulancii, aj u neurologi\u010dky. V\u0161ade bolo treba zisti\u0165, \u010di sa tam nenach\u00e1dza hemangi\u00f3m, nako\u013eko ten, ktor\u00fd m\u00e1 na povrchu bru\u0161ka, m\u00f4\u017ee ma\u0165 aj v tel\u00ed\u010dku. V\u0161etky vy\u0161etrenia sprev\u00e1dzal strach, ale na\u0161\u0165astie, ni\u010d sa nepotvrdilo. Museli sme \u00eds\u0165 aj na sono bru\u0161ka, kde zistili, ,\u017ee m\u00e1 mal\u00fa cystu na pe\u010deni, ktor\u00e1 sa, na\u0161\u0165astie, vstrebala. <\/span><\/span><\/span><\/p>\n

Nikto n\u00e1s neinformoval o zl\u00fdch v\u00fdsledkoch<\/b><\/span><\/span><\/span><\/p>\n

Pr\u00e1ve v tom obdob\u00ed, kedy sme rie\u0161ili hemangi\u00f3m, Bianka za\u010dala ve\u013emi m\u00e1lo pribera\u0165. Jej stolica bola \u010dast\u00e1, hlienovit\u00e1, zap\u00e1chaj\u00faca. Bolo treba h\u013eada\u0165 pr\u00ed\u010dinu. V tom \u010dase n\u00e1m pri\u0161lo predvolanie z kliniky v Podunajsk\u00fdch Biskupiciach. V\u0161etk\u00fdm novorodencom na Slovensku robia testy na cystick\u00fa fibr\u00f3zu (CF) hne\u010f po naroden\u00ed. N\u00e1s v\u0161ak nikto neinformoval, \u017ee Bianka m\u00e1 tieto v\u00fdsledky zl\u00e9. Ochorenie sa teda nezachytilo \u00faplne od narodenia. Predvolali n\u00e1s na potn\u00e9 testy, nako\u013eko oba odbery potvrdili cystick\u00fa fibr\u00f3zu. Mali sme ve\u013ek\u00e9 obavy a d\u00fafali, \u017ee sa diagn\u00f3za nepotvrd\u00ed. Povedali n\u00e1m, \u017ee sa zatia\u013e nemus\u00edme ni\u010doho ob\u00e1va\u0165, lebo vo v\u00e4\u010d\u0161ine pr\u00edpadov ide o falo\u0161ne pozit\u00edvny v\u00fdsledok. No napriek tomu sme za\u010dali h\u013eada\u0165 na internete i v odbornej literat\u00fare v\u0161etky inform\u00e1cie o tejto diagn\u00f3ze. Test potvrdil hrani\u010dn\u00e9 v\u00fdsledky, preto Bianku hospitalizovali. Boli potrebn\u00e9 \u010fal\u0161ie vy\u0161etrenia a genetick\u00e9 testy. Za\u010dali n\u00e1s pripravova\u0165 na to, \u017ee diagn\u00f3za sa s najv\u00e4\u010d\u0161ou pravdepodobnos\u0165ou potvrd\u00ed. <\/span><\/span><\/span><\/p>\n

\u201eB\u00e1li sme sa a do poslednej chv\u00edle sme d\u00fafali, \u017ee je to len omyl a ni\u010d sa nepotvrd\u00ed.\u201c<\/b><\/span><\/span><\/p>\n

A<\/span><\/span><\/span>si o \u0161tyri t\u00fd\u017edne boli v\u00fdsledky. Zr\u00fatil sa n\u00e1m svet… Bianke bola potvrden\u00e1 cystick\u00e1 fibr\u00f3za, mut\u00e1ci<\/span><\/span><\/span>a<\/span><\/span><\/span> F508del a CFTR 2, 3del<\/b><\/span><\/span><\/span>. <\/span><\/span><\/span>Povedali n\u00e1m, \u017ee mut\u00e1cia F508del postihuje p\u013e\u00faca a tr\u00e1venie a m\u00e1 \u0165a\u017ek\u00fd priebeh. Druh\u00e1 mut\u00e1cia je \u013eahk\u00e1. Nikto v\u0161ak nevie dopredu poveda\u0165, ak\u00fd bud\u00fa ma\u0165 obe priebeh, u ka\u017ed\u00e9ho pacienta sa to prejavuje inak. <\/span><\/span><\/span><\/p>\n

\"\"Dodnes sa s t\u00fdm nevieme zmieri\u0165<\/b><\/span><\/span><\/span><\/p>\n

Bianke nasadili ka\u017edodenn\u00fa lie\u010dbu. Lieky, inhal\u00e1cie, rehabilit\u00e1cie, v pr\u00edpade potreby antibiotik\u00e1. Nutn\u00e1 je celkov\u00e1 hygiena, zv\u00fd\u0161en\u00e1 starostlivos\u0165 o dom\u00e1cnos\u0165, odpady. \u017divot sa n\u00e1m zmenil od z\u00e1kladov…Ja s man\u017eelom aj syn sme podst\u00fapili testy, pri ktor\u00fdch sa zistilo, \u017ee obaja s man\u017eelom sme nosi\u010dmi g\u00e9nu cystickej fibr\u00f3zy. Syn zdedil jednu mut\u00e1ciu po mne a dc\u00e9rka obe po n\u00e1s dvoch. Je mo\u017enos\u0165, \u017ee die\u0165a zded\u00ed len jednu mut\u00e1ciu a bude zdrav\u00fdm nosi\u010dom, nezded\u00ed \u017eiadnu a bude zdrav\u00e9, alebo zded\u00ed obe mut\u00e1cie a bude ma\u0165 cystick\u00fa fibr\u00f3zu (to bol Biankin pr\u00edpad). <\/span><\/span><\/span><\/p>\n

Vtedy sa to v\u0161etko za\u010dalo…<\/b><\/span><\/span><\/p>\n

Od septembra 2016 bola Bianka st\u00e1le chor\u00e1. Mala obojstrann\u00fd z\u00e1pal p\u013e\u00fac, bakteri\u00e1lne z\u00e1paly, ka\u017ed\u00fa chorobu sprev\u00e1dzaj\u00fa vysok\u00e9 hor\u00fa\u010dky. To\u013eko antibiot\u00edk, \u010do doposia\u013e u\u017e\u00edvala, sme my s man\u017eelom nemali za cel\u00fd \u017eivot. V\u0161etko vyvrcholilo v j\u00fani 2017, kedy musela by\u0165 dva t\u00fd\u017edne v nemocnici, preto\u017ee jej stafylokok, ktor\u00e9ho m\u00e1 kolonizovan\u00e9ho v d\u00fdchac\u00edch cest\u00e1ch, sp\u00f4sobil sepsu. Bola vo v\u00e1\u017enom stave so silnou infekciou, no na\u0161\u0165astie, skon\u010dilo to dobre. Ale Biankin fyzick\u00fd v\u00fdvoj pre neust\u00e1le ochorenia zaost\u00e1val a jej tel\u00ed\u010dko bolo ve\u013emi slab\u00e9. Po poslednom prelie\u010den\u00ed v <\/span><\/span><\/span>n<\/span><\/span><\/span>emocnici sme v\u0161ak spozorovali, \u017ee zrazu nabrala silu a za\u010dala ve\u013emi r\u00fdchlo napredova\u0165. V 15-tom mesiaci sa po prv\u00fdkr\u00e1t posadila, ako 21-mesa\u010dn\u00e1 za\u010dala sama chodi\u0165. <\/span><\/span><\/span><\/p>\n

Realita je ve\u013emi n\u00e1ro\u010dn\u00e1<\/b><\/span><\/span><\/p>\n

Ka\u017ed\u00e9 r\u00e1no mus\u00ed Bianka spolu s ra\u0148ajkami zjes\u0165 aj lieky. Pri jedle ide hlavne o mno\u017estvo tuku. Bianka m\u00e1 vysoko-kalorick\u00fa di\u00e9tu, nako\u013eko jej pankreas nepracuje na 100 %, a tuky nevstreb\u00e1va v takom mno\u017estve, akoby potrebovala. Ku ka\u017ed\u00e9mu jedlu jej preto mus\u00edm d\u00e1vkova\u0165 enz\u00fdm Kre\u00f3n, aby tel\u00ed\u010dko tuky str\u00e1vilo a hne\u010f nevyl\u00fa\u010dilo. V opa\u010dnom pr\u00edpade by nepriberala. <\/span><\/span><\/span><\/p>\n

D\u00f4le\u017eit\u00e1 je aj inhal\u00e1cia. A\u017e po t\u00fdchto proced\u00farach sa m\u00f4\u017eeme \u00eds\u0165 hra\u0165. Pri tejto diagn\u00f3ze je ve\u013emi d\u00f4le\u017eit\u00e1 fyzioterapia a pohyb. Ak je vhodn\u00e9 po\u010dasie, ideme von. Pred obed\u0148aj\u0161\u00edm sp\u00e1nkom sa e\u0161te napap\u00e1me. Bianka je st\u00e1le doj\u010den\u00e1. Ke\u010f sa zobud\u00ed, postupne jej d\u00e1vam \u010fal\u0161ie lieky. Nie\u010do pred jedom, s jedlom a po jedle a op\u00e4\u0165 nasleduje inhal\u00e1cia. Popri v\u0161etkom pije slan\u00fa vodu, preto\u017ee deti postihnut\u00e9 touto diagn\u00f3zou pri poten\u00ed vylu\u010duj\u00fa ve\u013ek\u00e9 mno\u017estvo soli. Aj preto sa im hovor\u00ed \u201eslan\u00e9 deti\u201c. Po poobed\u0148aj\u0161ej prech\u00e1dzke potrebuje Bianka e\u0161te svoje ve\u010dern\u00e9 lieky a mus\u00ed znova inhalova\u0165. Ke\u010f deti zaspia, sterilizujem v\u0161etok riad, strieka\u010dky, odmerky, inhal\u00e1tor, cuml\u00edky a pr\u00edslu\u0161enstvo, aby som to na druh\u00fd de\u0148 mala v\u0161etko nachystan\u00e9. Mus\u00edm \u010dasto vys\u00e1va\u0165, um\u00fdva\u0165 v\u0161etky povrchy a podlahu. Na v\u0161etko pou\u017e\u00edvam chl\u00f3rov\u00e9 dezinfekcie s chl\u00f3rom a neust\u00e1le um\u00fdvame aj v\u0161etky hra\u010dky. \u010casto periem, m\u00e1me aj su\u0161i\u010dku, preto\u017ee vlhko nie je pre Bianku vhodn\u00e9. K\u00fdm toto v\u0161etko sprav\u00edm a poupratujem, je u\u017e ve\u013ea hod\u00edn a idem unaven\u00e1 spa\u0165. V noci sa Bianka e\u0161te bud\u00ed na doj\u010denie. Sme v\u0161ak \u0161\u0165astn\u00ed, \u017ee po\u010das d\u0148a za\u010dala lep\u0161ie papa\u0165, v\u010faka \u010domu m\u00e1 viac s\u00edl a lep\u0161ie odol\u00e1va chorob\u00e1m. <\/span><\/span><\/span><\/p>\n

\u017divotne d\u00f4le\u017eit\u00e1 hygiena<\/b><\/span><\/span><\/p>\n

Zdrav\u00ed \u013eudia si neuvedomuj\u00fa, \u010do v\u0161etko musia rodiny s de\u0165mi trpiacimi cystickou fibr\u00f3zou doma rie\u0161i\u0165, ak\u00e9 hygienick\u00e9 n\u00e1vyky musia dodr\u017eiava\u0165. Ak nepre\u017e\u00edvate t\u00fa starostlivos\u0165, strach, boj, obavy, nikdy si to nedok\u00e1\u017eete predstavi\u0165. Doma nem\u00e1me \u017eiadne kvety, preto\u017ee v p\u00f4de sa nach\u00e1dza ve\u013ea ne\u017eiaducich bakt\u00e9ri\u00ed. V zimnom obdob\u00ed, kedy je najviac chor\u00f4b, sa mus\u00edme vyvarova\u0165 chodeniu do uzavret\u00fdch priestorov, medzi \u013eud\u00ed a nestret\u00e1va\u0165 sa s nik\u00fdm, kto je chor\u00fd.<\/span><\/span><\/span><\/p>\n

Ve\u013emi ma to bol\u00ed, ke\u010f vid\u00edm, ak\u00e1 je dc\u00e9rka spolo\u010densk\u00e1, ako by v\u0161etko chcela, ak\u00e1 je zvedav\u00e1 a ka\u017ed\u00fdm d\u0148om rozm\u00fd\u0161\u013eam, \u010do m\u00f4\u017eem pre \u0148u urobi\u0165 lep\u0161ie. <\/span><\/span><\/span><\/p>\n

Viem, s\u00fa deti, ktor\u00e9 s\u00fa na tom ove\u013ea hor\u0161ie. Vtedy si poviem, \u017ee my sme na tom e\u0161te dobre. Na Bianke nie je vidie\u0165, \u017ee je chor\u00e1, tieto deti nie s\u00fa fyzicky postihnut\u00e9. Tel\u00ed\u010dko bojuje vn\u00fatri, kde my, bohu\u017eia\u013e, nevid\u00edme. Je to ve\u013emi vy\u010derp\u00e1vaj\u00face… Niekedy m\u00e1m pocit, \u017ee u\u017e idem z posledn\u00e9ho, \u017ee u\u017e to \u010falej nezvl\u00e1dnem. S\u00fa lep\u0161ie aj hor\u0161ie dni. Ke\u010f sa ale na m\u0148a obe moje deti usmej\u00fa a prit\u00falia sa, hne\u010f zo m\u0148a v\u0161etko opadne. Dod\u00e1vaj\u00fa mi energiu a chce sa mi plaka\u0165 od \u0161\u0165astia, \u017ee ich m\u00e1m. <\/span><\/span><\/p>\n

Chceli by sme de\u0165om splni\u0165 sen \u2013 ok\u00fapa\u0165 sa v mori…<\/b><\/span><\/span><\/span><\/p>\n

Ak to zdravotn\u00fd stav dovol\u00ed, chceli by sme de\u0165om dopria\u0165 dovolenku v Chorv\u00e1tsku, preto\u017ee minul\u00fd rok sa n\u00e1m to nepodarilo. Pre Bianku je slan\u00e1 voda ve\u013emi prospe\u0161n\u00e1. Vladkovi sa v poslednej dobe za\u010dal objavova\u0165 ekz\u00e9m a slan\u00e1 voda je lie\u010div\u00e1. Hovor\u00ed sa, \u017ee pre pacientov CF je to \u00fa\u017easn\u00e1 vec. K\u00fara pri mori ve\u013eakr\u00e1t pomohla vylie\u010di\u0165 aj r\u00f4zne bakt\u00e9rie, posiln\u00ed tie\u017e chorobou nam\u00e1han\u00e9 tel\u00ed\u010dko. M\u00e1me z toho tro\u0161ku strach, ale d\u00fafame, \u017ee to bude pre obe na\u0161e deti ve\u013emi pozit\u00edvna sk\u00fasenos\u0165.\"\" <\/span><\/span><\/span><\/p>\n

Klub cystickej fibr\u00f3zy<\/b><\/span><\/span><\/p>\n

Ve\u013ekej podpory sa n\u00e1m dost\u00e1va z Klubu cystickej fibr\u00f3zy a od na\u0161ej skupiny na soci\u00e1lnej sieti, ktor\u00e9 s\u00fa uzavret\u00e9 a sme v nich my, rodi\u010dia det\u00ed sCF, pacienti s CF, pr\u00edpadne \u010dlenovia rod\u00edn. Viem, \u017ee ak m\u00e1m probl\u00e9m, \u010di sa chcem niekomu zd\u00f4veri\u0165, op\u00fdta\u0165 sa nie\u010do, nap\u00ed\u0161em do skupiny a v\u0161etci radi pom\u00f4\u017eu. Sme ako jedna ve\u013ek\u00e1 rodina, m\u00e1me rovnak\u00fd osud, no paradoxne, na\u0161e deti sa stret\u00e1va\u0165 nesm\u00fa. Pom\u00e1hame si aj pri probl\u00e9moch na \u00faradoch, pri vybavovan\u00ed r\u00f4znych pr\u00edspevkov. Je zar\u00e1\u017eaj\u00face, \u017ee v mnoh\u00fdch pr\u00edpadoch \u00farady nechc\u00fa prizna\u0165 pacientom to, na \u010do maj\u00fa n\u00e1rok. Preto je pod\u013ea m\u00f4jho n\u00e1zoru d\u00f4le\u017eit\u00e9 zdvihn\u00fa\u0165 vo verejnosti povedomie o tomto ochoren\u00ed. Napriek tomu, \u017ee patr\u00ed medzi nevylie\u010dite\u013en\u00e9, d\u00f4sledn\u00fdm dodr\u017eiavan\u00edm \u017eivotospr\u00e1vy a spr\u00e1vnou podpornou lie\u010dbou je mo\u017en\u00e9 da\u0165 de\u0165om i dospel\u00fdm s touto diagn\u00f3zou \u0161ancu na pekn\u00fd \u017eivot. <\/span><\/span><\/p>\n

D\u00fafame, \u017ee sa aj na Slovensko dostane liek, ktor\u00fd je vyvinut\u00fd na typ mut\u00e1cie, ktor\u00fdm trp\u00ed Bianka. \u017de jej pom\u00f4\u017ee chorobu stabilizova\u0165 a bude tak m\u00f4c\u0165 \u017ei\u0165 lep\u0161\u00ed \u017eivot. Ver\u00edme, \u017ee tento liek bude u n\u00e1s schv\u00e1len\u00fd a prepl\u00e1can\u00fd na\u0161imi pois\u0165ov\u0148ami. To je moment\u00e1lne pre n\u00e1s, rodi\u010dov a v\u0161etk\u00fdch pacientov s CF, v\u00fdzva do bud\u00facnosti. Budeme bojova\u0165 za lep\u0161iu a dostupnej\u0161iu lie\u010dbu a podporu pre na\u0161e deti. <\/span><\/span><\/span><\/p>\n

\u013dubica <\/span><\/span><\/span><\/p>\n

PS: Ve\u013emi pekne \u010fakujeme rodine a tie\u017e kamar\u00e1tom i dobr\u00fdm \u013eu\u010fom okolo n\u00e1s za podporu a pomoc…<\/b><\/span><\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

\u201eV\u0161etk\u00fdm novorodencom na Slovensku sa robia testy na cystick\u00fa fibr\u00f3zu (CF) hne\u010f po naroden\u00ed. N\u00e1s v\u0161ak nikto neinformoval, \u017ee Bianka m\u00e1 tieto v\u00fdsledky zl\u00e9.\u201c M\u00e1m 31 rokov, l\u00e1sku svojho \u017eivota, man\u017eela Vladka a dve kr\u00e1sne deti\u010dky. P\u00e4\u0165ro\u010dn\u00e9ho syna Vladka a Bianku, ktor\u00e1 m\u00e1 2 roky. Tehotenstv\u00e1 neboli \u013eahk\u00e9, trpela som siln\u00fdmi nevo\u013enos\u0165ami skoro a\u017e do 30-teho […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"ngg_post_thumbnail":0,"footnotes":""},"categories":[2],"tags":[],"class_list":["post-1398","post","type-post","status-publish","format-standard","hentry","category-cysticka-fibroza"],"yoast_head":"\nV\u010fa\u010dn\u00ed za ka\u017ed\u00fd n\u00e1dych - klubcf.sk<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/klubcf.sk\/index.php\/2018\/05\/04\/vdacni-za-kazdy-nadych\/\" \/>\n<meta property=\"og:locale\" content=\"sk_SK\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"V\u010fa\u010dn\u00ed za ka\u017ed\u00fd n\u00e1dych - klubcf.sk\" \/>\n<meta property=\"og:description\" content=\"\u201eV\u0161etk\u00fdm novorodencom na Slovensku sa robia testy na cystick\u00fa fibr\u00f3zu (CF) hne\u010f po naroden\u00ed. 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