Life Goes On

Note: I will be posting in Taglish (Tagalog-English) because I really want to pour my emotions out. Kahit na puno ng positivity ang last post ko, at puno ng hope ang bawat tulang sinulat ko, aaminin ko, mas madami ang depression moments ko mula nang malaman kong may aneurysm ako. First, andun yung takot ko noon, takot na hindi ko malalampasan yung operasyon, takot na yun na ang katapusan. Ang dami kong luhang iniiyak, kasi hindi pa ako handa. Hindi ako handang iwanan ang mga mahal ko sa buhay. Aaminin ko, ilang beses, at hanggang ngayon, paulit ulit kong tinatanong, "bakit ako?". Why me, of all people in the world. I know I am not the nicest person on earth, pero hindi din naman siguro ako ang pinakamakasalanan. After nung first operation ko, labas-masok ako sa hospital dahil sa complications, at promise, sumuko na ko. Ayoko na, hirap na hirap na ako sa sakit, sa hindi maipaliwanag ng agham na pinagmumulan ng lahat nung sakit. Okay ang CT-scans, pero laging may masakit. Tatl...

PHILIPPINES: still searching for Marfan Foundations (comments are highly appreciated!) but you can go to Philippine Heart Center in Quezon City to get checked at an affordable price compared to St. Luke's. GERMANY: Marfan Hilfe: www.marfan.de (the following hospitals and clinics are from the Marfan Hilfe website) Städt. Krankenhaus Dresden-Neustadt e.V. Industriestraße 40 01129 Dresden Telefon: 0351 / 8 56 0 (Kinder u. Jugendliche bis 17 Jahren) zusammen mit: Herzzentrum Universität Leipzig Klinik f. Herzchirurgie Strumpellstr. 39 04289 Leipzig Terminvereinbarung: 0341 / 865 - 1421 Sprechstunde: 7.00 - 19.00 Uhr Ansprechpartner: Prof. Dr. med. F. W. Mohr Deutsches Herzzentrum Berlin u. Charité Augustenburger Platz 1 13353 Berlin Tel.: 030 / 4593 - 2320 Ansprechpartner. Fr. P. Gehle marfan@dhzb.de Universitäres Herzzentrum Hamburg GmbH Kardiologische Zentralambulanz Gebäude O 70 Martinistraße 52 20246 Hamburg Terminvereinbarung: Erwachsene: Tel. 040-74105-3990 Kinder: Tel. 040-741...

First of all, I wanted you to understand what is Marfan syndrome. I would just like to quote completely the definition from Marfan Organisation website: Marfan syndrome is a genetic disorder that affects our body's connective tissues . Connective tissue holds all the body’s cells, organs and tissue together. It also plays an important role in helping the body grow and develop properly. Connective tissue is made up of proteins. The protein that plays a role in Marfan syndrome is called fibrillin-1 . Marfan syndrome is caused by a defect (or mutation) in the gene that tells the body how to make fibrillin-1. This mutation results in an increase in a protein called transforming growth factor beta, or TGF-β. The increase in TGF-β causes problems in connective tissues throughout the body, which in turn creates the features and medical problems associated with Marfan syndrome and some related disorders. Because connective tissue is found throughout the body, Marfan syndrome can affect ...