{"id":20950,"date":"2024-04-24T22:40:50","date_gmt":"2024-04-25T02:40:50","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=20950"},"modified":"2024-09-03T02:59:38","modified_gmt":"2024-09-03T06:59:38","slug":"staying-focused-on-the-hard-things","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/staying-focused-on-the-hard-things\/","title":{"rendered":"Zor \u015eeylere Odaklanmaya Devam Etmek"},"content":{"rendered":"

Emily's Entourage, KF Fark\u0131ndal\u0131k Ay\u0131 boyunca kistik fibrozis (KF) toplulu\u011fu \u00fcyelerini hikayelerini payla\u015fmaya davet ediyor. Bug\u00fcnk\u00fc blog yaz\u0131s\u0131, KF'li bir \u00e7ocu\u011fun ebeveyni olan Noah Singer'\u0131n hikayesini vurguluyor.\u00a0\u00a0<\/i><\/p>\n

Hepimizin bizi benzersiz k\u0131lan \u00f6zellikleri vard\u0131r. Baz\u0131lar\u0131m\u0131z zekidir. Baz\u0131lar\u0131m\u0131z g\u00fc\u00e7l\u00fcd\u00fcr. Baz\u0131lar\u0131m\u0131z, kim olaca\u011f\u0131m\u0131z\u0131 tan\u0131mlamam\u0131za yard\u0131mc\u0131 olan zorluklarla kar\u015f\u0131la\u015f\u0131r\u0131z.\u00a0<\/span><\/p>\n

Kistik fibrozisin (KF) getirdi\u011fi zorluklar, baz\u0131lar\u0131m\u0131z\u0131 bu hastal\u0131\u011f\u0131n tarihe kar\u0131\u015ft\u0131\u011f\u0131 bir hayat\u0131n hayalini kurmaya cesaretlendiriyor. <\/span>\u0130nsanlar\u0131n kitaplarda KF'yi okudu\u011fu ve tedavisi yokken hayat\u0131n nas\u0131l oldu\u011funu merak etti\u011fi g\u00fcnleri hayal ediyorum. <\/span>Hen\u00fcz o noktada de\u011filiz ve bu hayale ula\u015fmak i\u00e7in \u00f6n\u00fcm\u00fczde pek \u00e7ok zorluk var, ancak KF tedavisindeki ilerlemeleri h\u0131zland\u0131rmak i\u00e7in birlikte \u00e7al\u0131\u015farak oraya ula\u015faca\u011f\u0131m\u0131za inan\u0131yorum.<\/span><\/p>\n

KF'nin zorluklar\u0131 \u00e7ok say\u0131da ve y\u00fcrek par\u00e7alay\u0131c\u0131d\u0131r. \u00d6zellikle bir akci\u011fer hastal\u0131\u011f\u0131 olarak bilinen KF, birden fazla organ\u0131 olumsuz etkiler ve di\u011fer hastal\u0131klara yakalanma olas\u0131l\u0131\u011f\u0131n\u0131 art\u0131r\u0131r. <\/span>komorbiditeler<\/span><\/a>. O\u011flum Levi yakla\u015f\u0131k iki y\u0131l \u00f6nce KF'li olarak do\u011fdu\u011funda h\u0131zland\u0131r\u0131lm\u0131\u015f bir kurs ald\u0131m. KF'li baz\u0131 \u00e7ocuklar mekonyum ileusu denilen bir hastal\u0131kla do\u011farlar. Mekonyum ileusu, bir bebe\u011fin mekonyum ad\u0131 verilen ilk d\u0131\u015fk\u0131s\u0131n\u0131n bebe\u011fin ince ba\u011f\u0131rsa\u011f\u0131n\u0131n (ileum) son k\u0131sm\u0131n\u0131 t\u0131kad\u0131\u011f\u0131 anlam\u0131na gelir. Bu durumun giderilmesi i\u00e7in ameliyat gerekebilir.<\/span><\/p>\n

Levi de o \u00e7ocuklardan biri ve ba\u011f\u0131rsaklar\u0131yla ilgili \u00e7ok say\u0131da ameliyat ge\u00e7irmesi gerekti <\/span>do\u011fumdan k\u0131sa bir s\u00fcre sonra. Do\u011fumundan \u00f6nce herhangi bir sorun belirtisi olmad\u0131\u011f\u0131 i\u00e7in buna haz\u0131rl\u0131kl\u0131 de\u011fildim. Normal bir do\u011fumdan, Levi'nin do\u011fumdan k\u0131sa bir s\u00fcre sonra a\u00e7 olmad\u0131\u011f\u0131na dair sinyallere ve acil ameliyata ge\u00e7tik. Daha \u00f6nce hi\u00e7 cerrahi bir prosed\u00fcr ge\u00e7irmemi\u015ftim, bu y\u00fczden bu benim i\u00e7in yeni bir d\u00fcnyayd\u0131. Gelecek bir\u00e7ok yeni, korkutucu soru ve olas\u0131l\u0131kla dolu oldu\u011fu i\u00e7in duygusal olarak zordu. En iyi tavsiye her \u015feyi g\u00fcn\u00fc g\u00fcn\u00fcne d\u00fc\u015f\u00fcnmekti.\u00a0\u00a0<\/span><\/p>\n

\"\"<\/p>\n

Ameliyat\u0131n ard\u0131ndan Levi, muhtemelen ameliyatlar\u0131yla ilgili olan akut, kronik bir akci\u011fer enfeksiyonu geli\u015ftirdi ve bu da ya\u015fam\u0131n\u0131n ilk aylar\u0131n\u0131 \u00e7ok zorla\u015ft\u0131rd\u0131. <\/span>Hatta d\u00fc\u011f\u00fcn\u00fcmden iki g\u00fcn \u00f6nce akci\u011fer enfeksiyonu nedeniyle hastaneye yat\u0131r\u0131ld\u0131. Neyse ki Levi d\u00fc\u011f\u00fcn\u00fcm\u00fcze kat\u0131labildi ama hastal\u0131k bizi ters k\u00f6\u015feye yat\u0131rmaya devam etti.<\/span><\/p>\n

Geriye d\u00f6n\u00fcp bakt\u0131\u011f\u0131mda, a\u015f\u0131r\u0131 strese girmedim ya da bunalmad\u0131m. O anda \u00f6nceliklerim \u00e7ok netti. Levi'ye iyi bak\u0131lmas\u0131n\u0131 sa\u011flamaktan daha y\u00fcksek bir \u00f6ncelik yoktu. Di\u011fer her \u015fey daha az \u00f6nemliydi - d\u00fc\u011f\u00fcn haz\u0131rl\u0131klar\u0131 bile - ve daha sonra halledilebilir, d\u0131\u015far\u0131dan temin edilebilir veya ba\u015fka bir \u015fekilde y\u00f6netilebilirdi. O\u011flumuzun sadece bir babas\u0131, bir annesi vard\u0131 ve bizim yard\u0131m\u0131m\u0131za ihtiyac\u0131 vard\u0131.<\/span><\/p>\n

Kimsenin bunu ya\u015famayaca\u011f\u0131 bir gelecek umuyorum. Hastanedeki solunum ekipleri bize art\u0131k daha az KF hastas\u0131 g\u00f6rd\u00fcklerini s\u00f6yl\u00fcyorlar. Bu harika ve toplum olarak kaydetti\u011fimiz \u00f6nemli ilerlemeyi yans\u0131t\u0131yor, ancak daha az hastaneye yat\u0131\u015f hi\u00e7bir \u015fey de\u011fil ve yeterince iyi de\u011fil. <\/span><\/p>\n

Her alevlenme ve kronik enfeksiyon sizi bir sonraki ad\u0131m i\u00e7in tetikte tutar ve size \u00e7\u00f6zmemiz ve \u00fcstesinden gelmemiz gereken g\u00fcnl\u00fck sava\u015f ve f\u0131rsatlar\u0131 hat\u0131rlat\u0131r.<\/span><\/p><\/blockquote>\n

Ayr\u0131ca, KF'li insanlar\u0131n 90%'sine yard\u0131m etme konusunda \u00f6nemli ilerlemeler kaydedilmi\u015f olsa da, yard\u0131ma ihtiyac\u0131 olan 10%'lik bir kesim daha vard\u0131r ve Emily's Entourage bu nedenle kritik \u00f6nem ta\u015f\u0131maktad\u0131r.<\/span><\/p>\n

Ailem ve Levi hayal edebilece\u011fimden \u00e7ok daha fazlas\u0131n\u0131n \u00fcstesinden geldi. Azmimiz olmad\u0131\u011f\u0131ndan de\u011fil, vard\u0131 ama zaman\u0131m\u0131n b\u00fcy\u00fck bir k\u0131sm\u0131n\u0131 eczaneler, sigorta, \u00e7\u0131\u011f\u0131r a\u00e7an ila\u00e7lar ve bir hastal\u0131\u011f\u0131n sonu\u00e7lar\u0131n\u0131 iyile\u015ftirmenin yollar\u0131 hakk\u0131nda d\u00fc\u015f\u00fcnerek ge\u00e7irdi\u011fim bir d\u00fcnyay\u0131 asla hayal edemezdim.\u00a0<\/span><\/p>\n

\u0130lk y\u0131l\u0131nda bir\u00e7ok kez hastaneye yatmas\u0131na ra\u011fmen, Levi'ye nas\u0131l bakaca\u011f\u0131m\u0131z\u0131 ve onu hastaneden nas\u0131l uzak tutaca\u011f\u0131m\u0131z\u0131 bulduk. Bir y\u0131l\u0131 a\u015fk\u0131n s\u00fcredir hastaneden uzak kald\u0131\u011f\u0131n\u0131 payla\u015fmaktan gurur duyuyorum. Ayr\u0131ca k\u0131sa s\u00fcre \u00f6nce nadir g\u00f6r\u00fclen KF mutasyonuna y\u00f6nelik mutasyon hedefli bir tedaviyi test eden bir klinik ara\u015ft\u0131rmaya ba\u015flamaya hak kazand\u0131. Hen\u00fcz erken ama bu bana \u00e7ok umut veriyor.<\/span><\/p>\n

Yap\u0131lacak \u00e7ok \u015fey var ve bunu yapmak i\u00e7in bir\u00e7ok insana ihtiya\u00e7 var. Levi'nin sa\u011fl\u0131kl\u0131 kalmas\u0131na ve hastal\u0131\u011f\u0131n ilerlemesini yava\u015flatmas\u0131na yard\u0131mc\u0131 olaca\u011f\u0131n\u0131 umdu\u011fumuz yeni bir ilaca ba\u015flamas\u0131na ra\u011fmen, bu bir tedavi de\u011fildir ve Levi hala KF ile ilgili zorluklar ya\u015fayacakt\u0131r. Daha fazlas\u0131n\u0131 yapmam\u0131z gerekiyor. <\/span>Nadir KF mutasyonlar\u0131 maalesef mutasyon hedefli tedavilerden faydalanamayan pek \u00e7ok ba\u015fka insan da var. KF'li herkes i\u00e7in hayat kurtaran tedavileri h\u0131zland\u0131rmaya odaklanmal\u0131y\u0131z ki her insan ve her ebeveyn benim \u015fu anda hissetti\u011fim iyimserli\u011fi payla\u015fabilsin.<\/span><\/p>\n

Ama\u00e7 - ve olmas\u0131 gereken - CF'yi ge\u00e7mi\u015fte kalan bir endi\u015fe haline getirmektir. Hayalini kurmaya cesaret etti\u011fim gelecek budur.\u00a0<\/span><\/p><\/blockquote>\n

Gelecek konusunda iyimserim \u00e7\u00fcnk\u00fc ge\u00e7mi\u015f, toplum olarak bir araya geldi\u011fimizde ve daha iyi bir gelecek hayal etmeye cesaret etti\u011fimizde zor \u015feyleri ba\u015farabilece\u011fimizi g\u00f6steriyor. \u0130yimserli\u011fim, bir aile olarak ba\u015fard\u0131\u011f\u0131m\u0131z her \u015feye ve bu toplumun dayan\u0131kl\u0131l\u0131\u011f\u0131na tan\u0131k olmaktan geliyor. Bu kritik \u00f6neme sahip \u00e7al\u0131\u015fman\u0131n bir par\u00e7as\u0131 olmaktan ve KF toplulu\u011fundaki herkesle birlikte KF'yi a\u015fmaktan heyecan duyuyorum. Bunu birlikte ba\u015farabiliriz! <\/span><\/p>\n

Yazar<\/h1>\n

\"\"<\/b>Noah Singer, biri kistik fibrozis hastas\u0131 olan ikizlerin babas\u0131d\u0131r. Long Island'l\u0131d\u0131r ve son on y\u0131ld\u0131r Seattle ve \u00e7evresinde ya\u015famaktad\u0131r. \u00c7al\u0131\u015fmalar\u0131 teknoloji sekt\u00f6r\u00fc etraf\u0131nda yo\u011funla\u015f\u0131yor.
\n<\/i><\/p>","protected":false},"excerpt":{"rendered":"

Emily's Entourage, KF Fark\u0131ndal\u0131k Ay\u0131 boyunca kistik fibrozis (KF) toplulu\u011fu \u00fcyelerini hikayelerini payla\u015fmaya davet ediyor. Bug\u00fcnk\u00fc blog yaz\u0131s\u0131, KF'li bir \u00e7ocu\u011fun ebeveyni olan Noah Singer'\u0131n hikayesini vurguluyor. Hepimizin bizi benzersiz k\u0131lan \u00f6zellikleri var. Baz\u0131lar\u0131m\u0131z zekidir. Baz\u0131lar\u0131m\u0131z g\u00fc\u00e7l\u00fcd\u00fcr. Baz\u0131lar\u0131m\u0131z... <\/p>\n

<\/div>\n

Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":1281,"featured_media":22868,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_titles_title":"Staying Focused on the Hard Things","_seopress_titles_desc":"During CF Awareness Month, Emily\u2019s Entourage invites members of the cystic fibrosis (CF) community to share their stories. This blog post highlights the story of Noah Singer, parent of a child with CF.\u00a0\u00a0","_seopress_robots_index":"","_seopress_robots_follow":"","_seopress_robots_imageindex":"","_seopress_robots_snippet":"","_seopress_robots_primary_cat":"none","_seopress_robots_breadcrumbs":"","_seopress_robots_freeze_modified_date":"","_seopress_robots_custom_modified_date":"","_seopress_robots_canonical":"","_seopress_social_fb_title":"","_seopress_social_fb_desc":"","_seopress_social_fb_img":"","_seopress_social_fb_img_attachment_id":0,"_seopress_social_fb_img_width":0,"_seopress_social_fb_img_height":0,"_seopress_social_twitter_title":"","_seopress_social_twitter_desc":"","_seopress_social_twitter_img":"","_seopress_social_twitter_img_attachment_id":0,"_seopress_social_twitter_img_width":0,"_seopress_social_twitter_img_height":0,"_seopress_redirections_value":"","_seopress_redirections_enabled":"","_seopress_redirections_enabled_regex":"","_seopress_redirections_logged_status":"both","_seopress_redirections_param":"","_seopress_redirections_type":301,"_seopress_analysis_target_kw":"","_seopress_news_disabled":"","_seopress_video_disabled":"","_seopress_video":[],"_seopress_pro_schemas_manual":[],"_seopress_pro_rich_snippets_disable_all":"","_seopress_pro_rich_snippets_disable":[],"_seopress_pro_schemas":[],"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_post_was_ever_published":false},"categories":[1],"tags":[],"class_list":["post-20950","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized"],"acf":[],"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/1000013046Rowing-tos.png","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/20950","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/users\/1281"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/comments?post=20950"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/20950\/revisions"}],"predecessor-version":[{"id":21050,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/20950\/revisions\/21050"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media\/22868"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=20950"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=20950"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=20950"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}