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[ Topic : Anomalie totale du retour veineux pulmonaire ]
Sujet : Anomalie totale du retour veineux pulmonaire Date : 22/09/2006, 13H25
Auteur :
MAYFLOWER
Notre petite fille née le mi juillet 2006 a été opérée le 04/08/06 d'une anomalie totale du retour veineux pulmonaire sur la veine cave supérieure. Malgré le soutien d'une équipe de professionnels formidable, nous souhaiterions avoir d'avantage d'informations sur cette malformation grace à l'expérience d'autres parents. Nous avons vu son cardiologue hier et elle souffre toujours d'une hyper tension artérielle pulmonaire très élevée (78 à 80). Une nouvelle intervention se profile pour le début d'année prochaine après un cathéterisme qui aura lieu en décembre ou janvier. Il est possible que cette nouvelle intervention ne résolve pas à 100% son problème. Peut-on vivre avec de l'hyper tension ? Quels sont les risques ? De nombreuses questions sans réponse nous assaillent.
Merci de nous éclairer où de nous diriger vers des personnes ayant vécu les mêmes épreuves et doutes que nous.
D'avance nous vous remercions de l'aide que vous pourrez nous fournir.
Sujet : Re : Anomalie totale du retour veineux pulmonaire Date : 27/10/2006, 19H39
Auteur :
petit_cathe
rassurez- vous, j'ai eu un retour veineux pulmonaire anormal total et je vit aujourd'hui depuis 16 ans sans plus aucun problème !
Pour entrainer mon coeur, j'ai fait de la natation dès l'age de trois ans!
coeur hello
cathy
Sujet : Re : Anomalie totale du retour veineux pulmonaire Date : 08/11/2006, 20H54
Auteur :
mayflower
hello coeur
Merci pour votre témoignage. Nous désespérions de toucher quelqu'un !
Votre message est plein d'espoir.
Puis-je me permettre de vous demander si vous souffriez également d'HTAP ?
Merci pour le temps que vous prenez pour nous répondre.
Bien à vous
Emmanuellecoeur coeur coeur
Sujet : Re : Anomalie totale du retour veineux pulmonaire Date : 18/02/2007, 21H44
Auteur :
petit_cathe
hello bonjour Emmanuelle, j'espère que l'opération de votre fille c'est bien passée.
Je n'ai pas eu HTAP.
Mon problème est résolu car je sais vivre sans médicaments ni opérations supplémentaires, cependant, il y a toujours un léger mélange des sangs (environ 10%).
j'espère que votre fille pourra vivre sans trop de difficultés et croquer la vie à pleines dents!etoile Sourire clindoeil je suis de tout coeur avec vous
Cath.
Sujet : Re : Anomalie totale du retour veineux pulmonaire Date : 01/06/2007, 12H05
Auteur :
pimpolho
Bonjour ! Je suis une jeune maman de 25 ans et je comprend très bien ce que vous ressentez ! Mon petit garçon a été opéré à l'âge de 4jours d'un retour veineu anormal total! Il a subi plusieurs opérations car malheureusement il a fait beaucoup d'infections ! Il a fait également de l'hypertension pulmonaire ! Grâce aux merveilleux médecins de ST-Luc et à sa volonté de vivre, il a survécu à tout ça et le voilà maintenant en super forme ! Le risque de l'hypertension pulmonaire reste. On doit régulièrement contrôler la veine qui a été rectifié et voir si elle "s'adapte" à la croissance du bébé. S'il fera à nouveau de l'hypertension pulmonaire, il faudra voir comment son corps réagit. Si son corps accepte et réagit bien, il pourra vivre comme ça. Dans le cas contraire il devra se refaire opérer. C'est tout ce que je sais. Si maintenant vous en savez plus que moins, tenez-moi au courant ! Je dois avouer qu'à chaque contrôle, j'ai peur qu'on découvre qch !
Sujet : Re : Anomalie totale du retour veineux pulmonaire Date : 28/08/2007, 21H44
Auteur :
Mayflower1
Bonsoir,
J'écris ce petit mot pour que vous sachiez qu'Elsa-May a soufflé sa première bougie en pleine forme. Le cathéthérisme passé en décembre dernier a montré que son hypertension était redevenue quasi normale. De ce fait l'opération prévue en début 2007 a été annulée. Une nouvelle visite en avril nous a permis de voir que l'état de notre puce s'était encore amélioré et que le cathéthérisme prévue fin 2007 était remis à dans 2 ou 3 ans. Il y a toujours des turbulances dans le collecteur ... à surveiller.
Merci de vos messages d'encouragements (surtout à Cath). Ils étaient pleins d'espoir et nous ont permis de traverser les périodes de doutes et d'abattements.
Bon courage à votre Petit garçon ... donnez nous des nouvelles... coeur coeur coeur coeur etoile etoile etoile
Sujet : Re : Anomalie totale du retour veineux pulmonaire Date : 08/05/2011, 16H08
Auteur :
petit_cathe
Bonjour Mayflower et Pimpolho,

Contente de voir qu'Elsa va bien. J'espère qu'il n'y a pas eu de complication depuis 2007. J'espère aussi que le petit garçon de Pimplho s'en est sorti.

J'ai aujourd'hui 20 ans. J'ai arrêté la natation parce que c'était devenu une contrainte plutôt qu'un plaisir.

J'ai passé mon permis théorique, il y a trois ans. Mais je n'avais pas assez confiance en moi à ce moment-là que pour prendre le volent, je l'ai finalement repris il y a peu, mais c'était trop tard pour réussir le pratique. Peu importe, ça arrive à plein de monde. Je réessayerai quand j'aurai le temps.

Je suis en dernière année de Relations Publiques à la Haute École Albert Jacquard, à Namur. J'espère bien obtenir mon diplôme. Sourire . Je fais justement mon travail de fin d'études sur l'annonce du handicap et le rôle que pourrait y trouver un chargé de relations publiques. Pour être dans le bain de mon sujet, j'ai participé à un séjour et quelques activités avec l'asbl Gratte ( www.gratte.org) et je fais mon stage de fin d'études à l'AWIPH ( www.awiph.be) . Je rencontre plein de gens formidables, pour qui le handicap n'est qu'une caractéristique parmi d'autres telles la couleur des yeux, des cheveux et de la peau.
Toutes les personnes handicapées que je vois en ce moment me laissent penser qu'en fait, être handicapé n'est pas si étrange.
Il ne faut pas avoir peur du futur. Laissez vos enfants vous montrer de quoi ils sont capables, c'est toujours ça de positif!
Croyez en l'avenir de vos enfants! Dites-vous que s'ils ont survécu à ça, ils sont capables de tout. Sourire

L'an prochain, je ferai peut-être des études de logopédie.

La seule gène par rapport à cette opération, c'est ma cicatrice. Moi j'ai toujours vécu avec, et donc, elle ne me dérange pas, mais certaines personnes se demandait ce que c'était cette "ligne là", des scouts me demandaient pourquoi je me mettait de la peinture, ça me fait sourire...

Par rapport à mes conquêtes amoureuses, j'ai parfois un peu peur, parce que certaines personnes sont effrayées par tout ce qui touche le coeur ou le cerveau et me regardent de travers, mais c'est leur problème, pas le mien. Je me dis que le garçon qui me rejetterait pour ça est bien stupide, parce que je suis beaucoup plus qu'une ligne sur le ventre.

En attendant, de revenir faire un tour ici, je vous fais des gros bisous pleins d'encouragements.
Souriez à vos enfants, pour qu'ils soient beaux.
Parlez-leur gentillement, pour qu'il aient une jolie voix.
Aimez-les, pour qu'ils aient confiance en eux.

A+ Cath.
Sujet : Re : Anomalie totale du retour veineux pulmonaire Date : 10/07/2015, 05H57
Auteur :
weterewr
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Sujet : Re : Anomalie totale du retour veineux pulmonaire Date : 08/12/2016, 04H43
Auteur :
cpp
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www.michaelkors.so/
Sujet : Re : Anomalie totale du retour veineux pulmonaire Date : 24/04/2017, 12H17
Auteur :
whn 123
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