{"id":12874,"date":"2019-05-10T17:21:21","date_gmt":"2019-05-10T21:21:21","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=12874"},"modified":"2019-05-10T17:37:58","modified_gmt":"2019-05-10T21:37:58","slug":"finding-hope-in-loss-becoming-a-cf-mother","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/finding-hope-in-loss-becoming-a-cf-mother\/","title":{"rendered":"Kay\u0131pta Umut Bulmak: KF Annesi Olmak"},"content":{"rendered":"

Zaman zaman Emily's Entourage (EE) toplulu\u011funun bir par\u00e7as\u0131 olan konuk blog yazarlar\u0131n\u0131 blogumuza benzersiz sesleriyle katk\u0131da bulunmalar\u0131 i\u00e7in davet ediyoruz. May\u0131s ay\u0131n\u0131n Kistik Fibrozis (KF) Fark\u0131ndal\u0131k Ay\u0131 olmas\u0131 \u015ferefine, #CFStrong serimizde bu hastal\u0131ktan do\u011frudan etkilenen bireyleri sergilemek istiyoruz. Bug\u00fcnk\u00fc konu\u011fumuz Mary Pozsgai, bir ortak ve bir sa\u00e7ma KF mutasyonuna sahip bir o\u011flu olan bir anne. Mary, KF ile ya\u015fad\u0131\u011f\u0131 ilk deneyimleri ve bunun o\u011fluyla bug\u00fcnk\u00fc ya\u015fam\u0131n\u0131 nas\u0131l \u015fekillendirdi\u011fini hat\u0131rl\u0131yor. <\/span><\/i><\/p>\n

Kistik Fibrozis (KF) ile ilgili deneyimim 1980'li y\u0131llar\u0131n ba\u015f\u0131nda en yak\u0131n arkada\u015f\u0131m Annie'yi bu korkun\u00e7 hastal\u0131k nedeniyle kaybetmemle ba\u015flad\u0131. Annie bana her zaman bir yeti\u015fkin olacak kadar ya\u015fayaca\u011f\u0131n\u0131 s\u00f6ylerdi (bu o zamanlar KF'li insanlar i\u00e7in pek s\u0131k rastlanan bir \u015fey de\u011fildi). Annie son nefesini verdi\u011finde, 7 Temmuz 1983'te, 18. do\u011fum g\u00fcn\u00fcnden tam bir g\u00fcn sonra onun yan\u0131ndayd\u0131m. S\u00f6ylemeye gerek yok, kalbim k\u0131r\u0131lm\u0131\u015ft\u0131. \u00d6fkeliydim, hayal k\u0131r\u0131kl\u0131\u011f\u0131na u\u011fram\u0131\u015ft\u0131m ve her \u015feyi sorguluyordum. Annie neden bu kadar ac\u0131 \u00e7ekmek ve hayat\u0131 bu kadar k\u0131sa kesilmek zorundayd\u0131? Neden bana b\u00f6ylesine g\u00fczel bir dostluk verilmi\u015fti de benden al\u0131nm\u0131\u015ft\u0131? Bu son sorunun cevab\u0131 10 y\u0131l sonra kristal berrakl\u0131\u011f\u0131nda ortaya \u00e7\u0131kt\u0131. Ekim 1994'te ilk \u00e7ocu\u011fumu do\u011furdum; Matthew ad\u0131n\u0131 verdi\u011fimiz k\u00fc\u00e7\u00fck, g\u00fczel bir o\u011flan. 8 lb 6oz a\u011f\u0131rl\u0131\u011f\u0131nda d\u00fcnyaya geldi ve hayat\u0131n\u0131n ilk birka\u00e7 haftas\u0131 m\u00fckemmel ge\u00e7ti. O de\u011ferli k\u00fc\u00e7\u00fck y\u00fcze saatlerce bakar ya da \u015fa\u015fk\u0131nl\u0131k i\u00e7inde onu kendime yak\u0131n hissederdim.<\/span><\/p>\n

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Bir ay kadar sonra endi\u015felenmeye ba\u015flad\u0131m \u00e7\u00fcnk\u00fc Matthew olmas\u0131 gerekti\u011fi kadar h\u0131zl\u0131 b\u00fcy\u00fcm\u00fcyor gibi g\u00f6r\u00fcn\u00fcyordu. Yine de \u00e7ok mutlu bir \u00e7ocuktu, s\u00fcrekli g\u00fcl\u00fcms\u00fcyordu, bu y\u00fczden doktor Matt'in sadece k\u00fc\u00e7\u00fck bir \u00e7ocuk oldu\u011funu ve her \u015feyin yolunda oldu\u011funu s\u00f6yledi\u011finde ona inand\u0131k. \u015eubat 1995'e gelindi\u011finde, Matthew yapt\u0131\u011f\u0131m\u0131z her \u015feye ra\u011fmen kilo kaybetmeye ba\u015flad\u0131. Ayr\u0131ca sa\u00e7lar\u0131 d\u00f6k\u00fclmeye ve cildi bozulmaya ba\u015flam\u0131\u015ft\u0131. \u0130kinci bir g\u00f6r\u00fc\u015f almak i\u00e7in onu yeni bir doktora g\u00f6t\u00fcrd\u00fck ve bu adam Matthew'un hayat kurtar\u0131c\u0131s\u0131 oldu. G\u00fczel o\u011flumuzun geli\u015fememesine neden olan sorunu belirlemek i\u00e7in hemen testler yapmaya ba\u015flad\u0131. Sadece birka\u00e7 g\u00fcn i\u00e7inde cevab\u0131m\u0131z\u0131 alm\u0131\u015ft\u0131k. D\u00f6rt ayl\u0131kken ve 9 lb 1 oz a\u011f\u0131rl\u0131\u011f\u0131ndayken (neredeyse do\u011fum kilosuna geri d\u00f6nd\u00fc), de\u011ferli o\u011flumuza KF te\u015fhisi kondu.<\/span><\/p>\n

\n

O anda Annie'nin sadece arkada\u015f\u0131m olmakla kalmad\u0131\u011f\u0131n\u0131, bu hastal\u0131\u011fa kar\u015f\u0131 benim ak\u0131l hocam oldu\u011funu ve art\u0131k Matthew'un koruyucu mele\u011fi oldu\u011funu fark ettim.<\/p>\n<\/blockquote>\n

O anda Annie'nin sadece arkada\u015f\u0131m olmakla kalmad\u0131\u011f\u0131n\u0131, bu hastal\u0131kta benim ak\u0131l hocam oldu\u011funu ve \u015fimdi de Matthew'un koruyucu mele\u011fi oldu\u011funu fark ettim. O zamanlar aram\u0131zdaki derin genetik ba\u011f\u0131 bilmesem de, Annie ile olan yolculu\u011fum beni Matt'in annesi olmaya haz\u0131rlad\u0131. Bu te\u015fhisle y\u0131k\u0131lm\u0131\u015f olsam da, o\u011flumuza yard\u0131m etmeye ba\u015flayabilmemiz i\u00e7in bir cevaba sahip oldu\u011fum i\u00e7in de rahatlam\u0131\u015ft\u0131m. Annie sayesinde, \u00f6n\u00fcm\u00fczde duran m\u00fccadelenin fark\u0131ndayd\u0131m ve m\u00fccadele etmek tam da yapmak istedi\u011fim \u015feydi. Matthew <\/span>asla<\/span><\/i> yolculu\u011funda yaln\u0131z kalmas\u0131n! Bu hastal\u0131\u011f\u0131n ne kadar korkun\u00e7 bir canavar oldu\u011funu \u00f6nceden bilmeden gafil avlanan aileler i\u00e7in kalbim par\u00e7alan\u0131yor.<\/span><\/p>\n

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Bir KF Bak\u0131m Merkezine yerle\u015ftikten sonra i\u015fler yoluna girmeye ba\u015flad\u0131. Ancak 15 ya\u015f\u0131ndayken Matthew'un d\u00fcnyas\u0131 bu hastal\u0131\u011f\u0131n onu t\u00fcm g\u00fcc\u00fcyle vurmas\u0131yla de\u011fi\u015fti. Matthew'un akci\u011ferlerinde t\u00fcberk\u00fcloz d\u0131\u015f\u0131 mikobakteri (NTM) enfeksiyonu geli\u015fti\u011fini ke\u015ffettik. Bu \u00f6zellikle tehlikeli ve zor bir bakteridir ve uzun s\u00fcreli IV antibiyotiklerle ilk yolculu\u011funa yol a\u00e7t\u0131. \u0130lk turda 14 ay boyunca aral\u0131ks\u0131z serum tedavisi g\u00f6rd\u00fc. Matt'in annesi olmaktan \u00e7\u0131k\u0131p hem\u015firesi, IV terapisti ve vaka y\u00f6neticisi oldum. O yazdan bu yana Matt 33'ten fazla kez hastaneye yat\u0131r\u0131ld\u0131, iki tur uzun s\u00fcreli serum tak\u0131ld\u0131 ve tedavi y\u00fck\u00fc g\u00fcnde yakla\u015f\u0131k iki saate \u00e7\u0131kt\u0131. T\u0131ptaki geli\u015fmelerle birlikte, bu s\u00fcre zarf\u0131nda Matthew'un en yayg\u0131n KF mutasyonu olan bir F508del geni ta\u015f\u0131d\u0131\u011f\u0131, ancak di\u011fer sa\u00e7ma mutasyonunun o kadar nadir oldu\u011fu ke\u015ffedildi ki, Matt d\u00fcnya \u00e7ap\u0131ndaki t\u00fcm veri taban\u0131nda bu mutasyona sahip 9 ki\u015fiden sadece 1'iydi.<\/span><\/p>\n

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KF i\u00e7in fon ve fark\u0131ndal\u0131k yaratmak i\u00e7in elimden geleni yaparak erkenden \u00e7ok aktif hale geldim. Bunun Matthew'un gelece\u011finin anahtar\u0131 oldu\u011funa inan\u0131yorum ve KF, Matthew'a ya da bu korkun\u00e7 hastal\u0131\u011fa sahip ba\u015fka bir \u00e7ocu\u011fa sava\u015f a\u00e7arken arkama yaslan\u0131p hi\u00e7bir \u015fey yapmayacakt\u0131m. Bug\u00fcn sahip olduklar\u0131m\u0131za k\u0131yasla Annie'nin bu m\u00fccadelede ona yard\u0131mc\u0131 olacak ne kadar az \u015feyi oldu\u011funu biliyorum, ara\u015ft\u0131rmalar\u0131n bizi nereye getirdi\u011fini ilk elden g\u00f6rd\u00fcm. KF geninin ke\u015ffini, bu hastal\u0131\u011f\u0131n semptomlar\u0131na yard\u0131mc\u0131 olmak i\u00e7in yeni ve \u015fa\u015f\u0131rt\u0131c\u0131 ila\u00e7lar\u0131n geli\u015ftirilmesini, enfeksiyon kontrol\u00fcn\u00fcn daha iyi anla\u015f\u0131lmas\u0131n\u0131 ve \u015fimdi de\u011fi\u015ftiricileri g\u00f6rd\u00fcm... baz\u0131 gen mutasyonlar\u0131 i\u00e7in h\u00fccresel d\u00fczeyde neler olup bitti\u011fini ger\u00e7ekten d\u00fczelten ila\u00e7lar. Ba\u015fka bir KF sava\u015f\u00e7\u0131s\u0131n\u0131n bu ila\u00e7lara ba\u015flayaca\u011f\u0131n\u0131 her duydu\u011fumda kalbim mutluluktan patl\u0131yor, ancak ayn\u0131 zamanda k\u0131r\u0131l\u0131yor \u00e7\u00fcnk\u00fc t\u00fcm kat\u0131l\u0131m\u0131ma ra\u011fmen, nadir g\u00f6r\u00fclen bir mutasyon nedeniyle, kendi o\u011flum bu harika, hayat de\u011fi\u015ftiren de\u011fi\u015ftiriciler i\u00e7in uygun de\u011fil.<\/span><\/p>\n

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Emily's Entourage'\u0131 bulmak beni yeni bir umutla doldurdu. Art\u0131k bu m\u00fccadelede ger\u00e7ekten yaln\u0131z olmad\u0131\u011f\u0131m\u0131z\u0131 biliyoruz.<\/p>\n<\/blockquote>\n

Ara\u015ft\u0131rmac\u0131lar\u0131n hala her mutasyonu hedef alan ila\u00e7lar \u00fczerinde \u00e7al\u0131\u015ft\u0131\u011f\u0131n\u0131 biliyorum, ancak zaman\u0131n bize kar\u015f\u0131 i\u015fledi\u011fini de biliyorum. Matthew son 7 y\u0131lda akci\u011fer fonksiyonlar\u0131n\u0131n 40%'sini kaybetti ve her g\u00fcn her an ayakta kalmak i\u00e7in sava\u015fmaya devam ediyor. Matt i\u00e7in bu ila\u00e7lar olmadan bir y\u0131l daha ge\u00e7irme d\u00fc\u015f\u00fcncesi bile beni deh\u015fete d\u00fc\u015f\u00fcr\u00fcyor. Emily's Entourage'\u0131 bulmak beni yeni bir umutla doldurdu. Art\u0131k bu m\u00fccadelede ger\u00e7ekten yaln\u0131z olmad\u0131\u011f\u0131m\u0131z\u0131 biliyoruz.<\/span><\/p>\n

\"\"<\/p>\n

Umut \u0131\u015f\u0131\u011f\u0131 i\u00e7in g\u00f6z\u00fcn\u00fcz\u00fc d\u00f6rt a\u00e7\u0131n. KF'nin kar\u015f\u0131s\u0131na \u00e7\u0131kard\u0131\u011f\u0131 her \u015feyle hayal edebilece\u011fimden daha b\u00fcy\u00fck bir cesaretle y\u00fczle\u015fen zorlu bir sava\u015f\u00e7\u0131 yeti\u015ftirdik. Di\u011fer iki \u00e7ocu\u011fum da ayn\u0131 cesareti g\u00f6sterdi. Onlar da hastanede karde\u015flerinin yan\u0131nda b\u00fcy\u00fcd\u00fcler. Bu hastal\u0131ktan her ne kadar nefret etsem de (ve ger\u00e7ekten nefret ediyorum!), hepimizin bug\u00fcnk\u00fc halimize gelmemize yard\u0131mc\u0131 oldu. Ailemizin KF ile olan yolculu\u011fu sayesinde b\u00f6ylesine harika gen\u00e7 yeti\u015fkinlere d\u00f6n\u00fc\u015fen bu \u00fc\u00e7 \u00e7ocu\u011fumla ne daha fazla gurur duyabilir ne de onlar\u0131 daha fazla sevebilirdim. <\/span><\/p>","protected":false},"excerpt":{"rendered":"

Zaman zaman Emily's Entourage (EE) toplulu\u011funun bir par\u00e7as\u0131 olan konuk blog yazarlar\u0131n\u0131 blogumuza benzersiz sesleriyle katk\u0131da bulunmalar\u0131 i\u00e7in davet ediyoruz. May\u0131s ay\u0131n\u0131n Kistik Fibrozis (KF) Fark\u0131ndal\u0131k Ay\u0131 olmas\u0131 \u015ferefine, #CFStrong serimizde bu hastal\u0131ktan do\u011frudan etkilenen bireyleri tan\u0131tmak istiyoruz. Bug\u00fcnk\u00fc konu\u011fumuz Mary Pozsgai... <\/p>\n

<\/div>\n

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