My husband has IPF. he is on perfidenone 3 three times daily (9 in total). Next week he has appointment to discuss using Nintedanib instead. Would appreciate comments as to advantages (if there are any). Have read that Nintedanib blocks the effects of important proteins that tell the lung to make scar tissue.
Hi Lois: I have been reading your post. I have had breathing challenges as a lung cancer survivor of 9 years 5 mo. I had surgery at Mayo and they also found PF.
i had to learn to breath properly after lung surgery that removed most of my left lung.
I know how scary it maybe to find that next breath.
Dr Amit Sood's, Paced Breathing Study has changed my life. I practiced this breathing pattern and it has helped me to live a great quality of life.
Take a moment to sit in a comfortable chair. Close your eyes. Tell your body to relax from your toes up to your head. Slowly try to breath in through your nose and out through mouth. Or reverse this pattern if it is too difficult by breathing in through your mouth and out through your nose. Take it very slow. Keep a slow ruther of breathing going for 10 mins.
I have found this relaxation can help me even when I feel stressed or hurried. I do have moments when I must remind my brain to slow down 'the dreaded fear' of shortness of breath.
I stop and think through how I breath. I also had to tell my feet to move. I barely crept across a room. But with breathing practice, practice, practice three years later I worked my way back to ridding a bicycle. I walk fast now and chase my grandson!
I discovered moving and not sitting helps me breath. I have to move to live. But life is wonderful even with most of my left lung missing. My husband tells people, She's in better shape now!
Let's stay connected. I am here to listen and happy that you are sharing your story on Connect, where there are so many great insights. I'm sending you silent blessings.
All my best, linda w - mentor volunteer
hi any one out there with this problem,? i have had for several years now, bad cough, now my right side started to hurt, doc gave a cat scan, it shows a spot on my lower left lung i have an appointment sep 5th at mayo hope they can figure this out i also have heart problems, two years ago open heart valve repalced now pace maker and diffib meds have caused some cough but changed and now little better should i worry about the spot ?? i fear it is cancer but they didnt say that ok thnaks.
Hello, you can get In touch with Esbriet at 844-372-7438. Also go online to Genentech-Access.com/Esbriet. You are virtually assured to get a grant or help paying for this drug! Also your doctor should give you the packet of information supplied by the pharmaceutical company.
Hope this helps
My husband has IPF. he is on perfidenone 3 three times daily (9 in total). Next week he has appointment to discuss using Nintedanib instead. Would appreciate comments as to advantages (if there are any). Have read that Nintedanib blocks the effects of important proteins that tell the lung to make scar tissue.
Just call: 844-372-7438 and tell your info to see if you qualify. Also can visit:Genentech-Access.com/Esbriet
Tell them that is an impossible amount & they will help you find a source like a Foundation or lookalike for financial help! Your dr.Should have given you booklet or brochure for review from Genentech
hi any one out there with this problem,? i have had for several years now, bad cough, now my right side started to hurt, doc gave a cat scan, it shows a spot on my lower left lung i have an appointment sep 5th at mayo hope they can figure this out i also have heart problems, two years ago open heart valve repalced now pace maker and diffib meds have caused some cough but changed and now little better should i worry about the spot ?? i fear it is cancer but they didnt say that ok thnaks.
I was diagnosed in Jan., 2013. About the middle of 2016, I started having fatigue and shortness of breath. No difference in my scarring - Dr. said it was in upper lobes and IPF was in lower. Saw my new pulmonologist in October, and was told to go on oxygen at night. Now I am on o2 24/7. Have Bronchiectasis and some COPD. I take 10 mg. Prednisone daily, as well as nevulizer and mucinex. I try to exercise regularly, but I have not been offered Esbriet or Ofev. I am almost 70.
My husband has IPF. he is on perfidenone 3 three times daily (9 in total). Next week he has appointment to discuss using Nintedanib instead. Would appreciate comments as to advantages (if there are any). Have read that Nintedanib blocks the effects of important proteins that tell the lung to make scar tissue.
Thank you! I will call tomorrow!! I don't know why my doctor didn't give me more information when he gave me the diagnosis of IPF. When I went home and looked it up on the internet, I was floored! I didn't know that the prognosis was so dire. I want to at least stay at the same level, not get worse. I want to start any treatments that may be available and start them right away. I don't want to waste any time! Thank you for the information. --Ann
hi any one out there with this problem,? i have had for several years now, bad cough, now my right side started to hurt, doc gave a cat scan, it shows a spot on my lower left lung i have an appointment sep 5th at mayo hope they can figure this out i also have heart problems, two years ago open heart valve repalced now pace maker and diffib meds have caused some cough but changed and now little better should i worry about the spot ?? i fear it is cancer but they didnt say that ok thnaks.
I was diagnosed about 2 years ago with IPF. I was on night time oxygen immediately and as needed during the day. I did okay until a few months ago when I got a sinus infection that will not go away. I can not breathe through my nose and end up gulping air. After further testing I discovered that my immune system is so bad that I have to have weekly injections of antibodies from other people. I am almost 80. I am hoping that the treatments will make my immune system strong enough to fight off the sinus infection. Has anyone else in the group had a similar situation?
My name is Larry - I have recently been diagnosed with Interstitial lung disease, which I think is the same thing. My condition improved when I quit taking statins. I started taking the statins after a heart attach about 8 years ago.
My shortness of breath and congestion are still there.
Have you found anything that helps or can relieve?
steve, I wouldn't expect anything to happen in two months! I took it for about five years. It's hard to answer your question exactly, but looking back, my breathing is no worse than it was several years ago, which is not what one would expect. I feel a lot better. I guess it all happened gradually.
I do also take other supplements. Black seed oil (please look it up) helps me to feel better overall, without being specific. Lots of vitamins and minerals,and NAC which keeps my cough loose. The serrapeptase was expensive, but the price varied depending on where you bought it. I found iherb to have the best prices.
Gentle exercise is very important also, I have come to realise. I used to think "I can't exercise, I get too breathless". But I have learned that being breathless does no harm, even though it is unpleasant.
If you would like to correspond with me further, you can email me: julwood at iprimus dot com dot au (safe way to put your address online). Obviously I can't/ don't give medical advice, but I'm happy to share what worked for me.
I was diagnosed with IPF 16 years ago. Since then I have only been taking acid reflux pills (2) per day. I work out in a gym 3 times/week and don't seem to lose my breath. When walking, I do. My doctor advises that I should take Esbriet but I am reluctant. My heart is strong and I sleep 7-8 hrs./night. I am at an impass as to what to do. I am 76. My symptoms increased slightly in 2013
I have that horrible cough. Sometimes i feel like i am chocking and will throw up. For me its worse at night laying in bed. I am usinghydrocodone/chlorphen suspension at bedtinem and its helping. Its worth a try if your doctor agrees.
Thanks Colleen! We're striving for 15 years too ... my husband recieved a bilateral lung transplant yesterday, July 5. So thankful for the medical teams at Mayo and our hero, his donor.
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Hi Lois: I have been reading your post. I have had breathing challenges as a lung cancer survivor of 9 years 5 mo. I had surgery at Mayo and they also found PF.
i had to learn to breath properly after lung surgery that removed most of my left lung.
I know how scary it maybe to find that next breath.
Dr Amit Sood's, Paced Breathing Study has changed my life. I practiced this breathing pattern and it has helped me to live a great quality of life.
Take a moment to sit in a comfortable chair. Close your eyes. Tell your body to relax from your toes up to your head. Slowly try to breath in through your nose and out through mouth. Or reverse this pattern if it is too difficult by breathing in through your mouth and out through your nose. Take it very slow. Keep a slow ruther of breathing going for 10 mins.
I have found this relaxation can help me even when I feel stressed or hurried. I do have moments when I must remind my brain to slow down 'the dreaded fear' of shortness of breath.
I stop and think through how I breath. I also had to tell my feet to move. I barely crept across a room. But with breathing practice, practice, practice three years later I worked my way back to ridding a bicycle. I walk fast now and chase my grandson!
I discovered moving and not sitting helps me breath. I have to move to live. But life is wonderful even with most of my left lung missing. My husband tells people, She's in better shape now!
Let's stay connected. I am here to listen and happy that you are sharing your story on Connect, where there are so many great insights. I'm sending you silent blessings.
All my best, linda w - mentor volunteer
Hello, you can get In touch with Esbriet at 844-372-7438. Also go online to Genentech-Access.com/Esbriet. You are virtually assured to get a grant or help paying for this drug! Also your doctor should give you the packet of information supplied by the pharmaceutical company.
Hope this helps
Just call: 844-372-7438 and tell your info to see if you qualify. Also can visit:Genentech-Access.com/Esbriet
Tell them that is an impossible amount & they will help you find a source like a Foundation or lookalike for financial help! Your dr.Should have given you booklet or brochure for review from Genentech
I was diagnosed in Jan., 2013. About the middle of 2016, I started having fatigue and shortness of breath. No difference in my scarring - Dr. said it was in upper lobes and IPF was in lower. Saw my new pulmonologist in October, and was told to go on oxygen at night. Now I am on o2 24/7. Have Bronchiectasis and some COPD. I take 10 mg. Prednisone daily, as well as nevulizer and mucinex. I try to exercise regularly, but I have not been offered Esbriet or Ofev. I am almost 70.
Thank you! I will call tomorrow!! I don't know why my doctor didn't give me more information when he gave me the diagnosis of IPF. When I went home and looked it up on the internet, I was floored! I didn't know that the prognosis was so dire. I want to at least stay at the same level, not get worse. I want to start any treatments that may be available and start them right away. I don't want to waste any time! Thank you for the information. --Ann
I was diagnosed about 2 years ago with IPF. I was on night time oxygen immediately and as needed during the day. I did okay until a few months ago when I got a sinus infection that will not go away. I can not breathe through my nose and end up gulping air. After further testing I discovered that my immune system is so bad that I have to have weekly injections of antibodies from other people. I am almost 80. I am hoping that the treatments will make my immune system strong enough to fight off the sinus infection. Has anyone else in the group had a similar situation?
steve, I wouldn't expect anything to happen in two months! I took it for about five years. It's hard to answer your question exactly, but looking back, my breathing is no worse than it was several years ago, which is not what one would expect. I feel a lot better. I guess it all happened gradually.
I do also take other supplements. Black seed oil (please look it up) helps me to feel better overall, without being specific. Lots of vitamins and minerals,and NAC which keeps my cough loose. The serrapeptase was expensive, but the price varied depending on where you bought it. I found iherb to have the best prices.
Gentle exercise is very important also, I have come to realise. I used to think "I can't exercise, I get too breathless". But I have learned that being breathless does no harm, even though it is unpleasant.
If you would like to correspond with me further, you can email me: julwood at iprimus dot com dot au (safe way to put your address online). Obviously I can't/ don't give medical advice, but I'm happy to share what worked for me.
I have that horrible cough. Sometimes i feel like i am chocking and will throw up. For me its worse at night laying in bed. I am usinghydrocodone/chlorphen suspension at bedtinem and its helping. Its worth a try if your doctor agrees.
Miracles at Mayo Clinic!
Sending silent blessings.
Linda
I was diagnosed 2 yrs ago,but no it started 3 yrs ago.
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