{"id":373,"date":"2021-07-27T16:47:28","date_gmt":"2021-07-27T14:47:28","guid":{"rendered":"https:\/\/www.amyloidosisalliance.org\/events\/world-amyloidosis-day\/testimonials\/la-vie-en-sursis\/"},"modified":"2021-07-27T16:47:28","modified_gmt":"2021-07-27T14:47:28","slug":"la-vie-en-sursis","status":"publish","type":"aa_testimony","link":"https:\/\/www.amyloidosisalliance.org\/fr\/events\/world-amyloidosis-day\/testimonials\/la-vie-en-sursis\/","title":{"rendered":"La Vie En Sursis"},"content":{"rendered":"<p class=\"wp-block-paragraph\">R\u00e9cit amylose :<br \/>D\u00e9claration de la Maladie Mars 2018.<br \/>\u00c2ge 62 ans.<br \/>Voici mon r\u00e9cit sur mon Amyloses Cardiaque AL , Tout a commenc\u00e9 avec le sport, j\u2019avais l\u2019habitude de faire de la natation intense \u00e0 savoir 16 km par semaine et un jour je n\u2019arrivais plus \u00e0 faire de Cardio. J\u2019ai commenc\u00e9 \u00e0 avoir mes premi\u00e8res interrogations. A partir de l\u00e0, tout s\u2019est encha\u00een\u00e9 tr\u00e8s tr\u00e8s rapidement. 15 jours en soins intensifs \u00e0 l\u2019institut Monsouris pour suspicion d\u2019un probl\u00e8me coronaire, puis transfert \u00e0 l\u2019h\u00f4pital Henri Mondor au service du PD. C\u2019est \u00e0 ce moment que commence les nombreux examens et pour finir une biopsie cardiaque.<br \/>R\u00e9sultat : trois semaines plus tard tard, le verdict tombe, j\u2019ai une Amylose Cardiaque AL coupl\u00e9 \u00e0 un my\u00e9lome multiple indolent.<br \/>Ma r\u00e9action \u00e0 cet instant a \u00e9t\u00e9 le d\u00e9nie. Je ne pouvais pas \u00eatre atteint d\u2019une maladie aussi grave !<br \/>S\u2019en suit les multiples visites \u00e0 l\u2019h\u00f4pital avec les m\u00e9decins pour les diff\u00e9rents soins.<br \/>Je voudrais relev\u00e9 l\u2019importance d\u2019avoir \u00e9t\u00e9 suivi par des personnes comp\u00e9tentes et patientes qui ont su m\u2019\u00e9couter, m\u2019expliquer les choses et me renseigner \u00e0 travers les diff\u00e9rentes \u00e9tapes :<\/p>\n<ul class=\"wp-block-list\">\n<li>Mon r\u00e9f\u00e9rent m\u00e9dical en cardio :le Docteur SG<\/li>\n<li>Mon h\u00e9matologue : Docteur B en coordination de soins<\/li>\n<li>Mon coordinateur de soin : l\u2019infirmier S Pour la premi\u00e8re chimioth\u00e9rapie, mon rythme \u00e9tait de trois jours \u00e0 l\u2019h\u00f4pital les premi\u00e8res semaines puis c\u2019est pass\u00e9 \u00e0 un jour.<br \/>Durant un de mes \u00ab s\u00e9jours \u00bb (si on peut r\u00e9ellement appel\u00e9 \u00e7a des vacances !), j\u2019ai eu la surprise de recevoir la visite d\u2019une femme th\u00e9rapeute dans ma chambre au service d\u2019amylose, pr\u00e9nomm\u00e9e \u00ab F\u00e9e Clochette \u00bb. Selon ses dires, elle \u00e9tait l\u00e0 pour m\u2019amener du Soleil dans ces moments difficiles.<br \/>Au d\u00e9but r\u00e9fractaire \u00e0 son intervention, je peux aujourd\u2019hui affirmer qu\u2019elle m\u2019a amen\u00e9 beaucoup de r\u00e9confort et sa pr\u00e9sence est m\u00eame devenue indispensable pour surmonter les moments tr\u00e8s difficiles.<br \/>La premi\u00e8re chimio n\u2019a pas trop fonctionn\u00e9 et j\u2019ai d\u00fb, au bout de quatre mois, pass\u00e9 sur un autre traitement le \u00abDARATUMUMAB\u00bb pendant 12 mois, toutes les semaines puis tous les quinze jours et enfin arr\u00eat puisque les taux de prot\u00e9ines \u00e9taient descendus. Enfin une bonne nouvelle !<br \/>J\u2019ai pu profiter de 8 mois de tranquillit\u00e9 sans chimioth\u00e9rapie, un peu moins de fatigue et d\u2019effet secondaire mais pas pour longtemps\u2026 Et oui ! au bout de 8 mois les prot\u00e9ines sont remont\u00e9es et rebelote. Je commence le 3\u00e8me traitement de chimio : VENOTOCLAX. Cela repr\u00e9sente 800 mg les premiers mois et \u00e0 ce jour je suis \u00e0 400 mg .<\/li>\n<\/ul>\n<p class=\"wp-block-paragraph\">Je reviens un peu en arri\u00e8re et sur le d\u00e9buts de l\u2019amylose cardiaque, le Docteur SG m\u2019avait demand\u00e9, apr\u00e8s la d\u00e9couverte de ma maladie, de me mettre un d\u00e9fibrillateur cardiaque que j\u2019ai cat\u00e9goriquement refus\u00e9 !<br \/>Je suis conscient que ma d\u00e9cision n\u2019\u00e9tait pas raisonnable mais je ne pouvais pas me r\u00e9soudre \u00e0 me promener avec cet appareil.<br \/>Suite \u00e0 ce refus, elle m\u2019a propos\u00e9 une alternative qui est la \u00ab LIVE VEST \u00bb que j\u2019ai trouv\u00e9 beaucoup trop contraignant pour mon quotidien. Je ne l\u2019ai donc gard\u00e9 que 3 mois.<br \/>Pour moi, les sympt\u00f4mes de cette Maladie sont surtout :<\/p>\n<ul class=\"wp-block-list\">\n<li>la fatigue<\/li>\n<li>les douleurs au c\u0153ur<\/li>\n<li>depuis peu, j\u2019ai un probl\u00e8me de d\u00e9glutition. Cons\u00e9quence : je m\u2019\u00e9trangle en mangeant<\/li>\n<li>le fait d\u2019\u00eatre restreint dans mes activit\u00e9s et surtout le sport puisque maintenant impossible de faire du Cardio. Nager, c\u2019est pass\u00e9 d\u2019un plaisir \u00e0 un combat puisque mon c\u0153ur est essouffl\u00e9 avant m\u00eame d\u2019avoir commenc\u00e9 l\u2019effort.<br \/>C\u2019est un combat quotidien pour essayer d\u2019\u00eatre\/de rester celui que j\u2019\u00e9tais avant \u2026 Pour finir je voudrais remercier le Docteur SG pour sa gentillesse et d\u2019\u00eatre \u00e0 l\u2019\u00e9coute, mon H\u00e9matologue le Docteur FL pour sa compr\u00e9hension, l\u2019infirmier S pour sa disponibilit\u00e9 et enfin toute l\u2019\u00e9quipe du Professeur D et le professeur lui-m\u00eame d\u2019\u00eatre autant \u00e0 l\u2019\u00e9coute de ses patients .<br \/>Je souhaiterais terminer sur une note positive : que cette journ\u00e9e de l\u2019amylose vous apporte \u00e0 tous du r\u00e9confort et plein d\u2019\u00e9toiles et du Soleil comme dirait F\u00e9e Clochette ????\u200d\u2642\ufe0f<\/li>\n<\/ul>\n<p class=\"wp-block-paragraph\">La Vie En Sursis &#8211; Philippe &#8211; France<\/p>\n","protected":false},"excerpt":{"rendered":"<p>D\u00e9claration de la Maladie Mars 2018. \u00c2ge 62 ans. Voici mon r\u00e9cit sur mon Amylose Cardiaque AL.<\/p>\n","protected":false},"featured_media":374,"template":"","class_list":["post-373","aa_testimony","type-aa_testimony","status-publish","has-post-thumbnail","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>La Vie En Sursis - Amyloidosis Alliance<\/title>\n<meta name=\"description\" content=\"D\u00e9claration de la Maladie Mars 2018. \u00c2ge 62 ans. Voici mon r\u00e9cit sur mon Amylose Cardiaque AL.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.amyloidosisalliance.org\/fr\/events\/world-amyloidosis-day\/testimonials\/la-vie-en-sursis\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"La Vie En Sursis - Amyloidosis Alliance\" \/>\n<meta property=\"og:description\" content=\"D\u00e9claration de la Maladie Mars 2018. \u00c2ge 62 ans. Voici mon r\u00e9cit sur mon Amylose Cardiaque AL.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.amyloidosisalliance.org\/fr\/events\/world-amyloidosis-day\/testimonials\/la-vie-en-sursis\/\" \/>\n<meta property=\"og:site_name\" content=\"Amyloidosis Alliance\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/AmyloidosisAlliance\/\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.amyloidosisalliance.org\/wp-content\/uploads\/2021\/07\/Philippe.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"500\" \/>\n\t<meta property=\"og:image:height\" content=\"661\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:site\" content=\"@amyloidosisa\" \/>\n<meta name=\"twitter:label1\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data1\" content=\"4 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/www.amyloidosisalliance.org\\\/fr\\\/events\\\/world-amyloidosis-day\\\/testimonials\\\/la-vie-en-sursis\\\/\",\"url\":\"https:\\\/\\\/www.amyloidosisalliance.org\\\/fr\\\/events\\\/world-amyloidosis-day\\\/testimonials\\\/la-vie-en-sursis\\\/\",\"name\":\"La Vie En Sursis - Amyloidosis Alliance\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/www.amyloidosisalliance.org\\\/fr\\\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\\\/\\\/www.amyloidosisalliance.org\\\/fr\\\/events\\\/world-amyloidosis-day\\\/testimonials\\\/la-vie-en-sursis\\\/#primaryimage\"},\"image\":{\"@id\":\"https:\\\/\\\/www.amyloidosisalliance.org\\\/fr\\\/events\\\/world-amyloidosis-day\\\/testimonials\\\/la-vie-en-sursis\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/www.amyloidosisalliance.org\\\/wp-content\\\/uploads\\\/2021\\\/07\\\/Philippe.jpg\",\"datePublished\":\"2021-07-27T14:47:28+00:00\",\"description\":\"D\u00e9claration de la Maladie Mars 2018. \u00c2ge 62 ans. Voici mon r\u00e9cit sur mon Amylose Cardiaque AL.\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/www.amyloidosisalliance.org\\\/fr\\\/events\\\/world-amyloidosis-day\\\/testimonials\\\/la-vie-en-sursis\\\/#breadcrumb\"},\"inLanguage\":\"fr-FR\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/www.amyloidosisalliance.org\\\/fr\\\/events\\\/world-amyloidosis-day\\\/testimonials\\\/la-vie-en-sursis\\\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"fr-FR\",\"@id\":\"https:\\\/\\\/www.amyloidosisalliance.org\\\/fr\\\/events\\\/world-amyloidosis-day\\\/testimonials\\\/la-vie-en-sursis\\\/#primaryimage\",\"url\":\"https:\\\/\\\/www.amyloidosisalliance.org\\\/wp-content\\\/uploads\\\/2021\\\/07\\\/Philippe.jpg\",\"contentUrl\":\"https:\\\/\\\/www.amyloidosisalliance.org\\\/wp-content\\\/uploads\\\/2021\\\/07\\\/Philippe.jpg\",\"width\":500,\"height\":661},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/www.amyloidosisalliance.org\\\/fr\\\/events\\\/world-amyloidosis-day\\\/testimonials\\\/la-vie-en-sursis\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Accueil\",\"item\":\"https:\\\/\\\/www.amyloidosisalliance.org\\\/fr\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"La Vie En Sursis\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/www.amyloidosisalliance.org\\\/fr\\\/#website\",\"url\":\"https:\\\/\\\/www.amyloidosisalliance.org\\\/fr\\\/\",\"name\":\"Amyloidosis Alliance\",\"description\":\"\",\"publisher\":{\"@id\":\"https:\\\/\\\/www.amyloidosisalliance.org\\\/fr\\\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/www.amyloidosisalliance.org\\\/fr\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"fr-FR\"},{\"@type\":\"Organization\",\"@id\":\"https:\\\/\\\/www.amyloidosisalliance.org\\\/fr\\\/#organization\",\"name\":\"Amyloidosis Alliance\",\"url\":\"https:\\\/\\\/www.amyloidosisalliance.org\\\/fr\\\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"fr-FR\",\"@id\":\"https:\\\/\\\/www.amyloidosisalliance.org\\\/fr\\\/#\\\/schema\\\/logo\\\/image\\\/\",\"url\":\"https:\\\/\\\/www.amyloidosisalliance.org\\\/wp-content\\\/uploads\\\/2026\\\/09\\\/logo.png\",\"contentUrl\":\"https:\\\/\\\/www.amyloidosisalliance.org\\\/wp-content\\\/uploads\\\/2026\\\/09\\\/logo.png\",\"width\":252,\"height\":252,\"caption\":\"Amyloidosis Alliance\"},\"image\":{\"@id\":\"https:\\\/\\\/www.amyloidosisalliance.org\\\/fr\\\/#\\\/schema\\\/logo\\\/image\\\/\"},\"sameAs\":[\"https:\\\/\\\/www.facebook.com\\\/AmyloidosisAlliance\\\/\",\"https:\\\/\\\/x.com\\\/amyloidosisa\"]}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"La Vie En Sursis - Amyloidosis Alliance","description":"D\u00e9claration de la Maladie Mars 2018. \u00c2ge 62 ans. Voici mon r\u00e9cit sur mon Amylose Cardiaque AL.","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/www.amyloidosisalliance.org\/fr\/events\/world-amyloidosis-day\/testimonials\/la-vie-en-sursis\/","og_locale":"fr_FR","og_type":"article","og_title":"La Vie En Sursis - Amyloidosis Alliance","og_description":"D\u00e9claration de la Maladie Mars 2018. \u00c2ge 62 ans. Voici mon r\u00e9cit sur mon Amylose Cardiaque AL.","og_url":"https:\/\/www.amyloidosisalliance.org\/fr\/events\/world-amyloidosis-day\/testimonials\/la-vie-en-sursis\/","og_site_name":"Amyloidosis Alliance","article_publisher":"https:\/\/www.facebook.com\/AmyloidosisAlliance\/","og_image":[{"width":500,"height":661,"url":"https:\/\/www.amyloidosisalliance.org\/wp-content\/uploads\/2021\/07\/Philippe.jpg","type":"image\/jpeg"}],"twitter_card":"summary_large_image","twitter_site":"@amyloidosisa","twitter_misc":{"Dur\u00e9e de lecture estim\u00e9e":"4 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/www.amyloidosisalliance.org\/fr\/events\/world-amyloidosis-day\/testimonials\/la-vie-en-sursis\/","url":"https:\/\/www.amyloidosisalliance.org\/fr\/events\/world-amyloidosis-day\/testimonials\/la-vie-en-sursis\/","name":"La Vie En Sursis - Amyloidosis Alliance","isPartOf":{"@id":"https:\/\/www.amyloidosisalliance.org\/fr\/#website"},"primaryImageOfPage":{"@id":"https:\/\/www.amyloidosisalliance.org\/fr\/events\/world-amyloidosis-day\/testimonials\/la-vie-en-sursis\/#primaryimage"},"image":{"@id":"https:\/\/www.amyloidosisalliance.org\/fr\/events\/world-amyloidosis-day\/testimonials\/la-vie-en-sursis\/#primaryimage"},"thumbnailUrl":"https:\/\/www.amyloidosisalliance.org\/wp-content\/uploads\/2021\/07\/Philippe.jpg","datePublished":"2021-07-27T14:47:28+00:00","description":"D\u00e9claration de la Maladie Mars 2018. \u00c2ge 62 ans. Voici mon r\u00e9cit sur mon Amylose Cardiaque AL.","breadcrumb":{"@id":"https:\/\/www.amyloidosisalliance.org\/fr\/events\/world-amyloidosis-day\/testimonials\/la-vie-en-sursis\/#breadcrumb"},"inLanguage":"fr-FR","potentialAction":[{"@type":"ReadAction","target":["https:\/\/www.amyloidosisalliance.org\/fr\/events\/world-amyloidosis-day\/testimonials\/la-vie-en-sursis\/"]}]},{"@type":"ImageObject","inLanguage":"fr-FR","@id":"https:\/\/www.amyloidosisalliance.org\/fr\/events\/world-amyloidosis-day\/testimonials\/la-vie-en-sursis\/#primaryimage","url":"https:\/\/www.amyloidosisalliance.org\/wp-content\/uploads\/2021\/07\/Philippe.jpg","contentUrl":"https:\/\/www.amyloidosisalliance.org\/wp-content\/uploads\/2021\/07\/Philippe.jpg","width":500,"height":661},{"@type":"BreadcrumbList","@id":"https:\/\/www.amyloidosisalliance.org\/fr\/events\/world-amyloidosis-day\/testimonials\/la-vie-en-sursis\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Accueil","item":"https:\/\/www.amyloidosisalliance.org\/fr\/"},{"@type":"ListItem","position":2,"name":"La Vie En Sursis"}]},{"@type":"WebSite","@id":"https:\/\/www.amyloidosisalliance.org\/fr\/#website","url":"https:\/\/www.amyloidosisalliance.org\/fr\/","name":"Amyloidosis Alliance","description":"","publisher":{"@id":"https:\/\/www.amyloidosisalliance.org\/fr\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/www.amyloidosisalliance.org\/fr\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"fr-FR"},{"@type":"Organization","@id":"https:\/\/www.amyloidosisalliance.org\/fr\/#organization","name":"Amyloidosis Alliance","url":"https:\/\/www.amyloidosisalliance.org\/fr\/","logo":{"@type":"ImageObject","inLanguage":"fr-FR","@id":"https:\/\/www.amyloidosisalliance.org\/fr\/#\/schema\/logo\/image\/","url":"https:\/\/www.amyloidosisalliance.org\/wp-content\/uploads\/2026\/09\/logo.png","contentUrl":"https:\/\/www.amyloidosisalliance.org\/wp-content\/uploads\/2026\/09\/logo.png","width":252,"height":252,"caption":"Amyloidosis Alliance"},"image":{"@id":"https:\/\/www.amyloidosisalliance.org\/fr\/#\/schema\/logo\/image\/"},"sameAs":["https:\/\/www.facebook.com\/AmyloidosisAlliance\/","https:\/\/x.com\/amyloidosisa"]}]}},"_links":{"self":[{"href":"https:\/\/www.amyloidosisalliance.org\/fr\/wp-json\/wp\/v2\/aa_testimony\/373","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.amyloidosisalliance.org\/fr\/wp-json\/wp\/v2\/aa_testimony"}],"about":[{"href":"https:\/\/www.amyloidosisalliance.org\/fr\/wp-json\/wp\/v2\/types\/aa_testimony"}],"version-history":[{"count":0,"href":"https:\/\/www.amyloidosisalliance.org\/fr\/wp-json\/wp\/v2\/aa_testimony\/373\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.amyloidosisalliance.org\/fr\/wp-json\/wp\/v2\/media\/374"}],"wp:attachment":[{"href":"https:\/\/www.amyloidosisalliance.org\/fr\/wp-json\/wp\/v2\/media?parent=373"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}