{"id":138,"date":"2018-12-05T23:53:22","date_gmt":"2018-12-05T23:53:22","guid":{"rendered":"http:\/\/soignant.reseau-amylose.org\/?page_id=138"},"modified":"2025-02-07T12:02:01","modified_gmt":"2025-02-07T11:02:01","slug":"temoignages","status":"publish","type":"page","link":"https:\/\/reseau-amylose.org\/jesuissoignant\/documentation\/temoignages\/","title":{"rendered":"T\u00e9moignages"},"content":{"rendered":"\t\t
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T\u00e9moignages de patients<\/h2><\/h6>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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T\u00e9moignage des bienfaits sur ma vie de la pose du pacemaker pour insuffisance chronotrope<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Je suis une patiente de 55 ans atteinte d\u2019une amylose cardiaque \u00e0 transthyr\u00e9tine (TTR) avec insuffisance chronotrope, diagnostiqu\u00e9e il y a bient\u00f4t cinq ans.<\/em>
J\u2019ai b\u00e9n\u00e9fici\u00e9 de la pose d\u2019un pacemaker il y a six mois et j\u2019aimerais vous faire part de l\u2019am\u00e9lioration significative de ma qualit\u00e9 de vie qui en r\u00e9sulte.<\/em><\/p>

Sur le plan professionnel, j\u2019ai repris mon activit\u00e9 \u00e0 90 %, alors que la maladie m\u2019avait progressivement contrainte \u00e0 la r\u00e9duire de 25 %.<\/em><\/p>

Avec la fatigue, la dur\u00e9e moyenne de mes nuits de sommeil \u00e9tait de 11 heures, contre 9 heures actuellement.<\/em>
\u00c0 ces longues nuits s\u2019ajoutaient des siestes d\u2019environ 2 heures, trois fois par semaine. Aujourd\u2019hui, le besoin de faire la sieste a compl\u00e8tement disparu.<\/em><\/p>

Au quotidien, je peux monter un \u00e9tage sans m\u2019arr\u00eater, m\u00eame avec une petite charge d\u2019environ 3 kg, alors qu\u2019auparavant, je devais faire une \u00e0 deux pauses, m\u00eame \u00e0 vide, avant la mise en place de la proth\u00e8se cardiaque.<\/em>
Je me l\u00e8ve d\u00e9sormais d\u2019une chaise normalement, sans difficult\u00e9.<\/em>
Je ne suis plus essouffl\u00e9e lors des t\u00e2ches quotidiennes et mon p\u00e9rim\u00e8tre de marche s\u2019est consid\u00e9rablement agrandi.<\/em><\/p>

J\u2019ai repris une activit\u00e9 sportive avec plaisir, \u00e0 raison de 4 heures par semaine (marche, renforcement musculaire, yoga, natation).<\/em><\/p>

Sur le plan cognitif, je ne perds plus mes mots et je peux \u00e0 nouveau organiser et classer, ce qui \u00e9tait devenu tr\u00e8s difficile.<\/em>
Je peux \u00e9galement \u00e9largir ma vie sociale et reprendre des activit\u00e9s culturelles et cr\u00e9atives.<\/em><\/p>

Aujourd\u2019hui, parce que je me sens mieux et que je retrouve l\u2019envie, je prends conscience de tout ce que je n\u2019arrivais plus \u00e0 faire avant l\u2019intervention.<\/em><\/p>

Je terminerai par une anecdote que je trouve pertinente (!) : il m\u2019arrive encore fr\u00e9quemment de penser, avec frayeur, avoir oubli\u00e9 mon sac \u00e0 main\u2026 simplement parce que je ne le sens plus sur mon \u00e9paule ! Avant, je le portais comme un fardeau.<\/em><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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Le t\u00e9moignage de trois patients atteints d’amyloses diff\u00e9rentes – des sympt\u00f4mes identiques mais…<\/strong><\/span><\/h5>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Amylose ATTR cardiaques H\u00e9r\u00e9ditaire et Sauvage<\/h4>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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Amylose ATTR H\u00e9r\u00e9ditaire neurologique<\/h4>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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Amylose AL<\/h4>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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Amylose AA<\/h4>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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<\/div>\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t
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T\u00e9moignages de patients T\u00e9moignage des bienfaits sur ma vie de la pose du pacemaker pour insuffisance chronotrope Je suis une patiente de 55 ans atteinte d\u2019une amylose cardiaque \u00e0 transthyr\u00e9tine (TTR) avec insuffisance chronotrope, diagnostiqu\u00e9e il y a bient\u00f4t cinq ans.J\u2019ai b\u00e9n\u00e9fici\u00e9 de la pose d\u2019un pacemaker il y a six mois et j\u2019aimerais vous […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":890,"menu_order":1,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"categories":[],"tags":[],"class_list":["post-138","page","type-page","status-publish","hentry"],"yoast_head":"\nT\u00e9moignages - R\u00e9seau Amylose<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"http:\/\/reseau-amylose.org\/jesuissoignant\/documentation\/temoignages\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"T\u00e9moignages - 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