Pulmonary Fibrosis and sudden change in breathing

Posted by HARRY SMITH @francko, Jan 1, 2018

I USE OXY AT NIGHT. MY QUESTION IS THAT THE ONLY TIME I WOULD GET ANY SHORTNESS OF BREATH IS WHEN I WOULD WALKUP MY BASEMENT STEPS AND THAT WAS REALLY MILD. TWO DAYS AGO WHEN I GOT UP I WAS COMPLETLY OUT OF BREATH WHEN I JUST WALK FROM ROOM TO ROOM THIS WAS SO FAST I WOULD LIKE TO KNOW IF THIS IS NORMAL HAVING THIS MUCH OF A SUDDEN CHANGE FRANCKO

@kashanimn

Looking to connect with someone diagnosed with pulmonary hypertension. I just found out I have that, but I am not experiencing any symptoms. It was found in an x-ray of my chest when I had a gallbladder attack. Next step is to see a cardiologist. AM I dying?

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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

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@kashanimn

Looking to connect with someone diagnosed with pulmonary hypertension. I just found out I have that, but I am not experiencing any symptoms. It was found in an x-ray of my chest when I had a gallbladder attack. Next step is to see a cardiologist. AM I dying?

Jump to this post

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..

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@kashanimn

Looking to connect with someone diagnosed with pulmonary hypertension. I just found out I have that, but I am not experiencing any symptoms. It was found in an x-ray of my chest when I had a gallbladder attack. Next step is to see a cardiologist. AM I dying?

Jump to this post

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

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@kashanimn

Looking to connect with someone diagnosed with pulmonary hypertension. I just found out I have that, but I am not experiencing any symptoms. It was found in an x-ray of my chest when I had a gallbladder attack. Next step is to see a cardiologist. AM I dying?

Jump to this post

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.

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@kpeace

When I was first diagnosed in June of 2017 I went through the why me pity party for a little while. When I first heard the doctor say IPF I had no idea what it was and when it was explained I kinda went numb. How could this be, I don't smoke? I went home and made the mistake of googling it and saw the 3-5 year prognosis.
I cope with the diagnosis by deciding to take control of my situation instead of continuing to let it control me. I got into pulmonary rehab and joined a gym to exercise on the other days, I joined weighwatchers and started eating healthy, I went to the right web sites and forums and learned as much as I could about my disease.
I highly recommend the book " Ultimate Pulmonary Wellness" by Dr Noah Greenspan. It has saved me by teaching me how to live with the disease instead of just waiting for it to kill me.
I've decided that I'm not going to die from IPF. I'm going to keep fighting until they find the cure (there are lots of things that look promising)or I lose enough weight to get evaluated for a lung transplant.

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@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

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@kashanimn

Looking to connect with someone diagnosed with pulmonary hypertension. I just found out I have that, but I am not experiencing any symptoms. It was found in an x-ray of my chest when I had a gallbladder attack. Next step is to see a cardiologist. AM I dying?

Jump to this post

@kashanimn I have a feeling you aren't dying any time soon. That is a good opening question for your doctor though. Perhaps once the hole in your heart is repaired; it may lighten the burden on your lungs and the pulmonary hypertension calm down. I do not know much about your condition, but would like to learn more about it. Would you mind coming back on and sharing what you find out? I sincerely hope that everything works out for you.

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@kashanimn

Looking to connect with someone diagnosed with pulmonary hypertension. I just found out I have that, but I am not experiencing any symptoms. It was found in an x-ray of my chest when I had a gallbladder attack. Next step is to see a cardiologist. AM I dying?

Jump to this post

your so welcome,anytime any of us on this page can be of help seems like we all answer the call….Be Blessed. Snook

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