Comunidad Hipertensión Pulmonar (HP)

Reúnase, debata y apoye a otros pacientes o familias que viven en Hipertensión Pulmonar (HP). Contribuya a los temas o simplemente comparta lo que piense

Newly diagnosed

I was diagnosed a little over a year ago. My doctor immediately on my first visit with him connected my sjorgens and an X-ray that was overlooked by the doctor he was replacing . The heart was enlarged (swollen) and immediately ordered an echo. This showed pulmonary hypertension.

I already had a cardiologist so I went there so the 2 of them could work together. These 2 doctors knew each other so thiswasnt going to be an issue. The problem is all my other medical issues and how do these affect each other. I was referred to the university as they had a ph team. Unfortunately they couldn't help me as I have an infection which can not be treated/cured and the rhc could cause this infection to go into my bloodstream and kill me. They are there if I need to see them, thus my doctor asks me to return. So far they are only treating me via lasix for my swelling. This was helping at first but my swelling got worse due to a sjorgens med change and when I came off that it worsened before it got better. My recent echo showed my swelling on my heart worsened and it was the ph which worsened , so I'm awaiting my appointment with the specialist next week.
Any advice on how to manage symptoms? Medications which work?

i was recently diagnosed too- when they told me my heart was enlarged I thought I was going to have a panic attack right there. I am overweight AND heart disease runs in my family and I feel like Im a disaster waiting to happen...

as far as medications that work- (i actually just posted about something i heard on another post too) apparently viagra is an off-label use for treatment for PH. apparently its just marketed as something else for the purpose of PH treatment. heres the website I saw it on- https://www.rareconnect.org/en/community/p...

love and good vibes to you