Pulmonary Hypertension are scary words and it's easy for your mind to jump right to "I'm dying" . I wouldn't worry about things until you see the cardiologist and get an echocardiogram. My PH showed up when I was getting a high resolution CT scan to track the progress of my IPF. My head went to the scary place for a short time. During the echo they will measure what your actual pressure number is. When I got the results my doctors told me it was very mild ,don't be concerned and they will monitor it. There are also some medications that can slow down the progression.

I have pulmonary hypertension along with IPF I was diagnosed with PF couple years ago and couple months was diagnosed with PH they are just keeping an eye on pulmonary hypertension. My last recent appointment we discussed the new med for PF which I have to let my "team" at Henry Ford in Detroit know this week, it's a lot of testing if I decide to try it and the cost is really high which my team will write grants for.it's always a lot of testing, trips to hospital for diff tests & the nearby pulmonary specialist I see also, besides the testing for new med have to do a sleep study. It takes up a lot of time that makes me feel anxious but also will hopefully extend my life so it is so worth it
It's good on this site that we can talk freely and get the support we so need.Thank you & Good Luck to everyone. Snookie.

I have IPF and PH too. What's the med that you're talking about?

it's Esbriet & lots of work, testing to do before I start (grant writing for expense) but looking forward to it ...anything to stay with people I love including myself. For my age have a lot of energy & told I do not look my age certainly don't feel it. Many things to do yet...Be Blessed...Snokie

Can i hear more about grant writing?
linda

I'm taking OFEV which is the other med available for IPF. I chose Ofev because I'm really fair skinned and with the increased sensitivity to the sun with Espriet I'm afraid I would just explode in the sun.

I was on esbriet when I was first diagnosed.after a few months I had a skin reaction with little red bumps all over my body. Also had sick feelings on and off switched to Ofev and have no issues

I don't know much about it truthfully, just learning about so much. What I know is they take your income first and contact your insurance co. see what they pay if they will? then the grant writing is done by your Dr. or team of Doctors.There are monies available from different organizations I'm told IF they have not run out of monies..I'm also told that happens. Would be awful to go through so much to get on meds then reach the toward the end of line (getting everything done) and boom, no money available.But I like many others will try my best whatever the outcome...If I get more info I will surely share it.... Snookie...they chose Esbriet over Ofev because I need some surgery & that plays into what med would allow that..

I didn't know that,so much to learn and thank you for sharing that. Snookie

I was told, the only why to determine the pressure in the Pulmonary artery was to actually go into the Pulmonary Artery either thru the groin or arm. I had this done in Jan. and they used my arm to enter the artery.