{"id":26171,"date":"2026-04-30T09:02:51","date_gmt":"2026-04-30T13:02:51","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=26171"},"modified":"2026-04-30T16:47:30","modified_gmt":"2026-04-30T20:47:30","slug":"the-quiet-weight-of-living-with-cf","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/the-quiet-weight-of-living-with-cf\/","title":{"rendered":"Kistik Fibrozis ile Ya\u015faman\u0131n Sessiz Y\u00fck\u00fc"},"content":{"rendered":"

Kistik Fibrozis Fark\u0131ndal\u0131k Ay\u0131 boyunca Emily\u2019s Entourage, KF toplulu\u011funun \u00fcyelerini hikayelerini payla\u015fmaya davet ediyor. Bug\u00fcn\u00fcn blog yaz\u0131s\u0131nda; bir baba, e\u015f, karde\u015f ve KF ile ya\u015fayan bir birey olan Joey Borgioni yer al\u0131yor; yaz\u0131, zihinsel y\u00fck\u00fc, g\u00fcnl\u00fck disiplini ve KF'nin sadece kendi hayat\u0131n\u0131 de\u011fil, kendisine en yak\u0131n olanlar\u0131n hayatlar\u0131n\u0131 da sessizce nas\u0131l \u015fekillendirdi\u011fini ele al\u0131yor.<\/span><\/i><\/p>\n

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

\u0130nsanlar kistik fibrozis (KF) hakk\u0131nda d\u00fc\u015f\u00fcnd\u00fcklerinde, genellikle belirgin \u015feyleri g\u00f6z \u00f6n\u00fcnde bulundururlar: \u00f6ks\u00fcr\u00fck, tedaviler, ila\u00e7lar, fiziksel k\u0131s\u0131tlamalar. Bunlar g\u00f6r\u00fcn\u00fcr k\u0131s\u0131mlard\u0131r. Ancak bunlar deneyimin yaln\u0131zca bir par\u00e7as\u0131d\u0131r.<\/span><\/p>\n

\u0130nsanlar\u0131n g\u00f6remedi\u011fi \u015fey, KBH ile ya\u015faman\u0131n zihinsel y\u00f6n\u00fcn\u00fcn, fiziksel y\u00f6n\u00fc kadar yorucu oldu\u011fudur. Normal bir hayat ya\u015famaya ve \u00f6nem verdi\u011finiz insanlarla birlikte olmaya \u00e7al\u0131\u015f\u0131rken, sa\u011fl\u0131kl\u0131 kalmak i\u00e7in her g\u00fcn neler yap\u0131lmas\u0131 gerekti\u011fini s\u00fcrekli olarak d\u00fc\u015f\u00fcnme bilincidir.<\/span><\/p><\/blockquote>\n

\u0130nsanlar\u0131n g\u00f6rmedi\u011fi \u015fey, bunlar\u0131n hi\u00e7birinin \u00f6zellikle dramatik veya kahramanca olmad\u0131\u011f\u0131d\u0131r. Kistik fibrozis (KF), do\u011fas\u0131 gere\u011fi, uzun vadede y\u00f6netmek i\u00e7in kararl\u0131l\u0131k, azim ve disiplin gerektiren, yava\u015f\u00e7a t\u00fcketen bir hastal\u0131kt\u0131r. Yorgun oldu\u011funuzda bile, me\u015fgul oldu\u011funuzda bile, ba\u015fka bir \u015fey yap\u0131yor olmay\u0131 tercih edece\u011finiz zamanlarda bile, nefes al\u0131p menenizi sa\u011flamaya yard\u0131mc\u0131 olan \u015feyleri tekrar tekrar se\u00e7mektir.<\/span><\/p>\n

Ayr\u0131ca Kistik Fibrozis'in (KF) sadece beni etkilemedi\u011fini de g\u00f6rm\u00fcyorlar. Hayat\u0131mdaki insanlar\u0131, genellikle sessiz ve g\u00f6ze \u00e7arpmayan \u015fekillerde, \u00f6zellikle de bana en yak\u0131n olanlar\u0131 etkiliyor.<\/span><\/p>\n

Kistik fibrozisli (KF) birinin karde\u015fi olarak, bu hastal\u0131\u011f\u0131 anlay\u0131\u015f\u0131m onunla omuz omuza \u015fekillendi. Hayat\u0131m\u0131n \u00e7o\u011fu boyunca, KF'li bildi\u011fim tek di\u011fer ki\u015fi odu. Birlikte randevulara gittik, okul \u00f6ncesi tedavileri birlikte yapt\u0131k, hatta KF ile birlikte gelen sindirim sistemi sorunlar\u0131 nedeniyle yolculuklardan sonra banyo i\u00e7in kavga bile ettik. <\/span><\/p>\n

O payla\u015f\u0131lan deneyimde belli bir safl\u0131k, bunun sadece normal bir durum oldu\u011funa dair bir his vard\u0131. 2019'da hayat\u0131n\u0131 kaybetene kadar K(istik Fibrozis)'in ac\u0131mas\u0131zl\u0131\u011f\u0131 bana tam anlam\u0131yla ger\u00e7ek\u00e7i gelmemi\u015fti.\u00a0<\/span><\/p><\/blockquote>\n

\"\"Bir aydan k\u0131sa bir s\u00fcre i\u00e7inde, kanepede birlikte Philadelphia Eagles ma\u00e7lar\u0131 izlemekten onun aram\u0131zdan ayr\u0131lm\u0131\u015f olmas\u0131na ge\u00e7tik. <\/span><\/p>\n

Kistal fibrozisin ger\u00e7e\u011fi budur. Gelecek belirsizdir. Tek bir bakteri veya enfeksiyon, g\u00f6z a\u00e7\u0131p kapay\u0131ncaya kadar hastanede uzun s\u00fcreli kal\u0131\u015flar veya daha k\u00f6t\u00fcs\u00fc anlam\u0131na gelebilir. <\/b>Karde\u015fimi kaybetmek, hayat\u0131n k\u0131r\u0131lganl\u0131\u011f\u0131n\u0131n, \u00f6zellikle de Kistik Fibrozis (KF) ile ge\u00e7en hayat\u0131n k\u0131r\u0131lganl\u0131\u011f\u0131n\u0131n \u00e7ok daha derin bir \u015fekilde fark\u0131na varmam\u0131 sa\u011flad\u0131. Kula\u011fa ne kadar kli\u015fe gelse de, tek bir g\u00fcn\u00fc bile garanti etmemem gerekti\u011fini, her an\u0131n de\u011ferini bilmem gerekti\u011fini fark etmeme yard\u0131mc\u0131 oldu.<\/b><\/p><\/blockquote>\n

Bir evlat olarak, anne ve babam\u0131n KBF hastas\u0131 iki \u00e7ocuk yeti\u015ftirirken harcad\u0131klar\u0131 zamana ve yapt\u0131klar\u0131 fedakarl\u0131klara sonsuz minnettar\u0131m. Solunum tedavileri, hava yolu temizli\u011fi, enzimler (pankreas yetmezli\u011fi nedeniyle yiyecekleri sindirmeye yard\u0131mc\u0131 olma), doktor randevular\u0131, egzersiz, hastane yat\u0131\u015flar\u0131 ve daha bir\u00e7ok konuda yap\u0131lan yard\u0131mlar... Bir yeti\u015fkin olarak, sa\u011fl\u0131\u011f\u0131ma olan bilincim ve ba\u011fl\u0131l\u0131\u011f\u0131m, KBF nedeniyle halihaz\u0131rda kay\u0131p ya\u015fam\u0131\u015f bir ailenin par\u00e7as\u0131 olmamla do\u011frudan ba\u011flant\u0131l\u0131d\u0131r. Karde\u015fimin yoklu\u011fu her zaman dile getirilmese de her zaman hissedilir. Anne ve babam\u0131n ya\u015fad\u0131klar\u0131 ac\u0131n\u0131n ve sa\u011fl\u0131\u011f\u0131m\u0131 ne kadar \u00f6nemsediklerinin bilincinde olarak onlara kar\u015f\u0131 anlay\u0131\u015fl\u0131 olmaya \u00e7al\u0131\u015f\u0131yorum. <\/span><\/p>\n

Onlar\u0131n ya\u015fad\u0131klar\u0131ndan daha fazla kay\u0131p ya\u015famamalar\u0131 i\u00e7in elimden gelenin en iyisini yapmaya derin bir ba\u011fl\u0131l\u0131k duyuyorum. Bu duygu, onlar i\u00e7in her g\u00fcn olabildi\u011fim kadar sa\u011fl\u0131kl\u0131 kalmam konusunda beni motive ediyor.<\/span><\/p><\/blockquote>\n

Bir koca olarak \u00e7ok \u015fey talep etti\u011fimi biliyorum. E\u015fim benim g\u00fcc\u00fcm. KGF'nin g\u00fcnl\u00fck ger\u00e7eklerini \u2013tedavileri, ila\u00e7lar\u0131, geceki \u00f6ks\u00fcr\u00fck krizlerini\u2013 yak\u0131ndan ve bizzat g\u00f6r\u00fcyor. D\u00fc\u011f\u00fcn foto\u011fraflar\u0131m\u0131zda g\u00f6r\u00fcnen neb\u00fclizat\u00f6r kay\u0131\u015f\u0131 izleri gibi k\u00fc\u00e7\u00fck \u015feyleri bile.\u00a0<\/span><\/p>\n

Bunun \u00f6tesinde, KFT'den etkilenen bir\u00e7ok \u00e7iftin kar\u015f\u0131la\u015ft\u0131\u011f\u0131 \u2013\u00e7\u00fcnk\u00fc KFT'li \u00e7o\u011fu erkek infertilitledir\u2013 t\u00fcp bebek yolculu\u011funda bana e\u015flik etmesini istedim. Bu durum, bir\u00e7o\u011fu onun omuzlar\u0131na d\u00fc\u015fen kendine has fiziksel, duygusal ve finansal zorluklar\u0131 beraberinde getirdi. Hi\u00e7 \u015fikayet etmedi. <\/span><\/p>\n

Kistik fibrozisli hayat\u0131m\u0131z\u0131n nas\u0131l olabilece\u011fini anlad\u0131 ve her zorlukla cesaretle, do\u011frudan y\u00fczle\u015fti. Bunu kan\u0131ksam\u0131yorum ve yan\u0131mda oldu\u011fu i\u00e7in inan\u0131lmaz derecede \u015fansl\u0131y\u0131m.<\/span><\/p><\/blockquote>\n

Bir baba olmak, muhtemelen KSF'nin etkisini en \u00e7ok hissetti\u011fim konudur. K\u0131z\u0131m\u0131 kucaklay\u0131p ona biberonla mama verirken ayn\u0131 anda tedavilerimi yapt\u0131\u011f\u0131m, her iki rol\u00fc de ayn\u0131 anda yerine getirmeye \u00e7al\u0131\u015ft\u0131\u011f\u0131m anlar oluyor. Bunu, sabahlar\u0131 saat 5'te uyan\u0131p y\u00fczmeye gitti\u011fimde hissediyorum \u00e7\u00fcnk\u00fc bunun beni sa\u011fl\u0131kl\u0131 tutmaya yard\u0131mc\u0131 oldu\u011funu biliyorum, her ne kadar bu durum i\u015fe gitmeden \u00f6nce onunla ge\u00e7irece\u011fim vaktin azalmas\u0131 anlam\u0131na gelse de.\u00a0<\/span><\/p>\n

\"\"Ve bir de daha zor d\u00fc\u015f\u00fcnceler var; gelecekle ilgili olanlar. Kimsenin konu\u015fmaktan ho\u015flanmad\u0131\u011f\u0131 ger\u00e7ek \u015fu ki, tarihsel olarak kistik fibroz (KF) hastalar\u0131 \u00f6nemli \u00f6l\u00e7\u00fcde k\u0131salm\u0131\u015f bir ya\u015fam beklentisiyle kar\u015f\u0131 kar\u015f\u0131ya kalm\u0131\u015ft\u0131r. K\u0131z\u0131m\u0131n liseden mezun oldu\u011funu, d\u00fc\u011f\u00fcn\u00fcnde onunla dans etti\u011fini ya da b\u00fcy\u00fcmesini ve tutkular\u0131n\u0131n pe\u015finden ko\u015ftu\u011funu g\u00f6rmek i\u00e7in buralarda olmama ihtimalim ger\u00e7ek bir olas\u0131l\u0131k. <\/span><\/p>\n

Tedavilerin ne kadar ilerledi\u011fini, t\u0131p alan\u0131nda ne kadar b\u00fcy\u00fck bir ilerleme kaydedildi\u011fini ve EE gibi ya\u015fam s\u00fcrelerini uzatmak i\u00e7in s\u00fcrekli m\u00fccadele eden kurulu\u015flar\u0131n varl\u0131\u011f\u0131n\u0131 biliyorum. Ancak yine de zaman\u0131 \u00e7antada keklik g\u00f6rm\u00fcyorum. Gelece\u011fin belirsizli\u011finin ve hayat\u0131n k\u0131r\u0131lganl\u0131\u011f\u0131n\u0131n yaratt\u0131\u011f\u0131 s\u00fcrekli fark\u0131ndal\u0131k, bana verilen her an\u0131 i\u00e7ime sindirmem i\u00e7in beni zorluyor.<\/span><\/p><\/blockquote>\n

B\u00fct\u00fcn bunlar Kistik Fibrozis'in y\u00fck\u00fcn\u00fc tek ba\u015f\u0131ma ta\u015f\u0131mad\u0131\u011f\u0131m\u0131 s\u00f6ylemek i\u00e7indir. Yak\u0131n arkada\u015flar\u0131m ve di\u011fer aile \u00fcyeleri de Kistik Fibrozis'in y\u00fck\u00fcn\u00fc kendi ellerince hissediyorlar. Bunun zor ve bazen k\u00fclfetli olabilece\u011fini biliyorum. Her \u015feyden \u00e7ok minnettar\u0131m. Sab\u0131rlar\u0131, g\u00fc\u00e7leri ve her \u015feyi benimle birlikte g\u00f6\u011f\u00fcsleme istekleri i\u00e7in.<\/span><\/p>\n

Kistik fibrozisli insanlar, hayattaki zorluklar\u0131 g\u00f6\u011f\u00fcsleme ve ya\u015fad\u0131klar\u0131 g\u00fc\u00e7l\u00fckleri d\u00fcnyay\u0131 farkl\u0131, daha olumlu bir mercekten g\u00f6rmek i\u00e7in kullanma konusunda tuhaf bir yetene\u011fe sahip gibi g\u00f6r\u00fcn\u00fcyorlar. \u00d6ncelikleri farkl\u0131 \u015fekilde belirlemeyi \u00f6\u011freniyorsunuz. <\/span><\/p>\n

K\u00fc\u00e7\u00fck, s\u0131radan anlar daha fazla \u00f6nem ta\u015f\u0131r: y\u00fcr\u00fcy\u00fc\u015fe \u00e7\u0131kmak, aileyle ak\u015fam yemek masas\u0131nda oturmak, arkada\u015flarla vakit ge\u00e7irmek ve bir do\u011fum g\u00fcn\u00fcn\u00fc daha kutlamak. KBH'li insanlar ezici zorluklarla kar\u015f\u0131 kar\u015f\u0131yad\u0131r, ancak bu zorlu\u011fu hayata daha derin bir minnettarl\u0131\u011fa ve hayat\u0131 daha dolu, daha anlaml\u0131 bir \u015fekilde ya\u015fama taahh\u00fcd\u00fcne d\u00f6n\u00fc\u015ft\u00fcrmenin yollar\u0131n\u0131 bulurlar.\u00a0<\/span><\/p><\/blockquote>\n

\u0130nsanlar\u0131n KBH hakk\u0131nda g\u00f6rmedi\u011fi \u015fey de tam olarak bu.<\/span><\/p>\n

Yazar Hakk\u0131nda:<\/span><\/h3>\n

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

 <\/p>\n

Kistik Fibrozis (KF) hastas\u0131 olan Joey Borgioni, e\u015fi, k\u0131z\u0131 ve iki kedisiyle birlikte Downingtown, PA'da ya\u015famaktad\u0131r. Hydraterra Professionals'da Planlama Uzman\u0131 olarak g\u00f6rev yapmakta olup, \u00e7evre ve at\u0131k su \u00e7\u00f6z\u00fcmlerine odaklanmaktad\u0131r. 2024 y\u0131l\u0131ndan bu yana Emily\u2019s Entourage ile \u00e7al\u0131\u015fan Joey, KF ara\u015ft\u0131rmalar\u0131n\u0131 ilerletmeye y\u00f6nelik \u00e7abalar\u0131 desteklemektedir. KF ile ya\u015farken, y\u00fczmenin ve arkada\u015flar\u0131 ile ailesiyle vakit ge\u00e7irmenin hem sa\u011fl\u0131\u011f\u0131n\u0131 hem de genel mutlulu\u011funu korumada \u00f6nemli bir rol oynad\u0131\u011f\u0131n\u0131 g\u00f6rmektedir.<\/span><\/p>","protected":false},"excerpt":{"rendered":"

During Cystic Fibrosis Awareness Month, Emily\u2019s Entourage invites members of the CF community to share their stories. Today\u2019s blog post features Joey Borgioni, a father, husband, brother, and person living with CF who reflects on the mental load, the daily discipline, and the ways CF quietly shapes not just his life, but the lives of… <\/p>\n

<\/div>\n

Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":1719,"featured_media":26182,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_titles_title":"","_seopress_titles_desc":"%%post_excerpt%%","_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":"","_monsterinsights_skip_tracking":false,"_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":[52,209,214,212,137],"class_list":["post-26171","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","tag-cf-awareness","tag-cfa","tag-cfa-month","tag-cystic-fibrosis-advocacy","tag-cystic-fibrosis-awareness-month"],"acf":[],"jetpack_sharing_enabled":true,"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/WordPress-Featured-Image-13.webp","post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/26171","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\/1719"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/comments?post=26171"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/26171\/revisions"}],"predecessor-version":[{"id":26183,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/26171\/revisions\/26183"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media\/26182"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=26171"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=26171"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=26171"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}