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HARRY SMITH
@francko

Posts: 18
Joined: Jul 01, 2015

Pulmonary Fibrosis and SUDDEN CHANGE IN BREATHING

Posted by @francko, Mon, Jan 1 7:33pm

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

REPLY

Harry, what are you diagnosed with and what stage. What it sounds like to me is a COPD exacerbation, a trip to your Dr. or maybe ER would be a good choice. Have you tried using your rescue inhaler…. albuteral? Waiting to hear from you.

BILL I WAS DIAGNOSED 28 DEC 2016 when i went to the hospt. for a broken femur when they did the ct they said my lungs had a lot of scare tissue and a couple of small nodules they went down my throat with a light and camera and took some samples. they said the samples showed those nodules was cancer and the scare tissue was PF so i had three very strong treatments of radiation from that time 4 months ago i had a good amount of morning mucis but the only time i was short of breath was when i climbed my basement stairs but about 2 days ago i started having trouble breathing just walking from room to room and that sudden change scared me and i wanted to know if that was normal. is it something that might just pass. i am on oxy at night only and the DR. told me not to use the albuterol only if i get a cold thank you very much for the reply waiting to hear any response you may have. I will see the DR this thursday thanks again FRANCKO

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?

@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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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.

@kpeace and @kashanimn, Welcome! I'm glad to see that you two have found this group and made a connection already. @kpeace– looks like your username fits you well and @kashanimn– hopefully this brought you a little peace of mind. Thanks to both of you.

My advice with participating on Mayo Clinic Connect…..You will find the information and experiences shared within this group helpful. Please take the opportunity to ask questions. As the community members, moderators and mentors of the group, we will all do our best to help find information within these walls and bring it forth to you. Sharing tips, advice and experience is good for everyone- especially newly diagnosed members that are scared and looking for others who have "been there".

If you don't mind sharing- Can you both give an example of what you have done to cope with being diagnosed? or a piece of advice that will help future members in their quest to find answers, here on Connect. We really look forward to getting to know you!

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.

@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 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.

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

@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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Good for you! That is a great attitude to have. I have been diagnosed for 3 years and doing the same as you Weight loss and exercise work for me. I am taking Ofev and so far no advancement of the IPF. You have to be positive and stay focused and live life to the fullest. Don't let the disease rule your life. Good luck!

@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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Thank you for your encouraging words and great attitude. I had the same reaction when I found out the projected longevity. Ouch! I plan to purchase the book you recommended. My goal is to stay as healthy as possible and not dwell on my lung condition.

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

@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

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

@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

Can i hear more about grant writing?
linda

@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'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.

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