Pulmonary Fibrosis and sudden change in breathing

I'm tagging fellow members @racerjon @cognac @ornelasrebecca @lyndylou @windwalker to bring them into this great discussion about living with pulmonary hypertension.

@kashanimn I know you were pretty anxious yesterday. How are you doing today?

Yes we must do all we can to stay healthy and HAPPY too, sometimes we are so focused on health we forget to be happy & enjoy ourselves, doing whatever it is to keep a smile on our face and love in our hearts for ourselves as well as those around us. Sometimes, I get up & dance in my living until I can't dance anymore ....then I take a bow & sit down with some water in a pretty wine glass...Enjoy your today stay in the present...it causes you to be more at peace.Snookie

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.

@kpeace I love your attitude! I am in a similar situation with my lungs, but it's not IPF. A positive attitude will take you far. I refuse to look or act ill. I feel like my body is responding in kind. On the outside I fool a lot of people. I look so healthy that I have had people chew me out for using the handi-cap parking spot. I only use them on days when I need to conserve energy. My doctor scratches his head when he sees me. He says "I have trouble perceiving that you have a serious illness, you look great! If I didn't know what your FEV numbers were, I'd never know." Thanks to the phenominal care at Mayo, I have improved to a point where I can enjoy life again. I know that the proverbial 'other shoe can drop' at any time; so, I am choosing to enjoy the level of health I have right now. I am wishing you the best and hopefully we both can stave off lung transplants! Hugs-Terri