Comunidad Hipertensión Pulmonar (HP)

Conozca, debata & respalde a otros pacientes o familias conviviendo con Hipertensión Pulmonar (HP). Participe en debates de grupo. Aporte a los temas, o tan sólo comparta su punto de vista.

Comenzar un debate ahora Debes estar conectado para usar esta función.

How do you cope?

In 2011 - My mother dearest passed away from PAH

Now ... I have started to develop the same symptoms as what she had...

I'm yet to confirm that I " Definitely " have it..

I'm only 23 years old, with two children under 5.. how do you even cope with this?

I can only think about leaving my children at such a young age and hardly knowing their own mother..

I know I don't actually know if I have it.. but I just want to tell everyone how strong you all are, and your stories all really touched me.. and made me think how valuable life is and that you can really go through anything in life.

Hipertensión pulmonar en España

Soy una chica que tiene su pareja con hipertension pulmonar y lleva 9 meses y no ve cambio está tomando sus pastillas y haciendo todo lo que dice su médico. pero no ve nada de mejoria.necesito ayuda o consejo tengo miedo que le pase algo.gracias

Tihana
moderador

PH COMMUNITY MAP

Hello everyone!

Maybe you already know that in the Members section there is a new world map. It is a more visual and fast way to contact other community members.
https://www.rareconnect.org/en/community/p...

3 important things:

1) To appear on the map you only have to edit your profile and add the location. If you already have done it, you can also specify your city, even zip code.
https://www.rareconnect.org/en/profile/edit

2) Unless you have the profile marked as public, the information on the map is only visible for members that have registered to the community. This means that visitors may see the map but not the spots and the links.

3) If you wish, you can also make your spot in the map only visible for your friends within the community. This option can be changed always from your profile.

If you have any question, leave me a comment below!

sténose artère pulmonaire à 25 ans,malade et desesperée

Bonsoir à tous,
J'ai 25 ans et j'ai une malformation congénitale cardiaque que l'on a découvert l'année derniere. Une sténose de l'artère pulmonaire. Je me pose bcp de question, j'ai peur.. J'ai mal car tout me semble vide ,noir, et je ne sais plus.. J'avais tout devant moi,et maintenant tout s'ecroule. Je suis un cas sur 1500 dans le monde.. Vous vous dites peut etre que je m'appitoie sur mon sort, mais je me suis battue depuis l'annee derniere jusqu'aujourd'hui.. Et maintenant je suis fatiguee de me battre. Je suis perdue.. Je me sens incomprise et seule meme si oui ma famille supporte, j'ai aussi mal pour eux.. Aidez-moi svp ,je vous en prie

Mild pulmonary hypertension and pregnancy

Hi,

Just wondering if someone could help me understand what's going on. I'm 15 weeks pregnant. I was admitted to hospital last Friday with bad chest pain. My blood gasses are low, my D'dimer is high 0.9 reading and my echo came back with a slightly high pressure in the right ventricle 30-40. I had to have a vq scan for a suspected blood clot but it came back clear.

Im not sure of all these medical readings and wondering should I be worried?

Pulmonary Hypertension and Pregnancy

I had an Echo in 2008 which I assume had no signs of pulmonary hypertension or my cardiologist would've said something. I had another one a month ago in December 2016. It showed mild tricuspid regurgitation and some elevated pressure in the aortic pulse wave velocity. Anyways she said I have Pulmonary hypertension. Which at first the OB said 30-50% chance of death at delivery. Then the new cardiologist said it's pulmonary venous hypertension and it's less than 5% of anything happening at all. I've been doing research on pulmonary hypertension but I can't really find too many answers about the different types. And it was my understanding that it couldn't be diagnosed for sure without a heart cath. I have no symptoms of anything. No shortness of breath no swelling in anywhere no anything. No chest pain. Not even with pregnancy. Does anyone have any kind of knowledge when it comes to any of this? I'm 28 weeks pregnant and I would just like to enjoy it.

Tihana
moderador

Hi, welcome to RareConnect!
My name is Tihana and I work with EURORDIS as an online community manager on RareConnect. As we have a community for PH I moved your post from the Discussion Group section to the Meet section of the community, so you can meet other people with experiences with PH.
Feel free to ask questions here and also check the other sections of this community to read stories of other families and find interesting articles and information about PH. In the Members section you can also find a map with the locations of other members.

My scared moment

Got the called from my pcp at work she started out friendly like always but I knew it wasn't good cause it was too friendly. And she doesn't called unless it's bad. I got ph and I called my mom and I cried so badly.until the next day.

I go ph now I'm feeling so hurt.