Friday, March 7, 2014

Question of the Week: Informed Patient

Question of the Week: What does it take to be an informed patient with a rare and difficult to diagnose disease like pulmonary hypertension? Answer in the comments below.


Anonymous said...

Since my first post diagnosis heart cath, I have found out that I have type 2 PH. I did not know that till the last year or so, and i was diagnosed in 2001. I had terrific doctors and nurses. They gave me info on meds for PH, but nobody ever told me I had type 2---which has no meds to treat it. If I had known type 2 even existed, I would have peppered my providers with questions. I regret not being more aqgressive in asking questions---oh, by the way, they assumed I knew, or else thought they had told me. How much time I wasted!

Anonymous said...

It takes determination to be an informed patient. PH patients absolutely must ask questions and get responses that answer their questions.
We have to educate ourselves and everyone we come in contact with for healthcare about what it means to be a PH patient.
We have to aggressively take control of our health and healthcare.

Anonymous said...

To be an informed patient make a list of questions for your doctors and ask each time you see them, join one of the many support groups available online and on the ground and ask the questions there too as members who have been on the journey will help with sound advice and visit the recognised websites recommended by the support groups. The many support groups specific for PH, no matter where you are in the PH world, are the best source to find out which websites give accurate, up to date information. Be mindful that there is a lot of outdated and incorrect information on the internet so be careful. Always ask no matter how insignificant our stupid you think the question is. Someone always has the answer.