Mayo Clinic Connect
Is there any one out there that has PF?
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.
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This is good information. My doctor emphasizes using sterile water to prevent any other challenges or unwanted infections. linda
Liked by Colleen Young, Connect Director
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.
You could lengthen your cannula cord and keep your portable oxygen concentrator nearby. I don’t see much of a problem. I swim with the tank and regulator in a safe place at the side of the pool. You can’t get the regulator wet. I don’t want my electronics-based concentrator anywhere near the water. I don’t see a problem with golfing, just get a long breathing tube. You can go up to 50 feet without any dropoff of oxygen.
Good Morning! I have been diagnosed with Pulmonary Fibrosis and dealing with this is really wearing me out. Not getting any better and worried about the outcome.
I am in the same position as you. I was diagnosed two months ago. I am scared but also willing to fight. I went to a seminar on taking the medication Esbriet. I signed up and hope they will contact me. Without insurance, the meds cost $8000 a month. With insurance, the cost is near $3000 a month. There are grants and studies that you can apply for. I am on 2 liters of oxygen 24 hours a day. I would be happy to share any information I find with you. I think this is a good website. –Ann
May I ask how your husband got this medication? According to my pharmacy, it will cost me nearly $3000 a month. I want to get on a study or a grant but even though I have sent my information to them online and filling out paperwork at a seminar, I have not yet heard from the pharma.
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?
Whatever you can do is not wrong. Keep walking with your dogs. Being active and getting out of the house is helping me. My favorite exercise is swimming. I use a tank at the side of the pool and a 50-foot breathing tube. I don’t even bring my portable concentrator outside because I don’t want it to get wet. I turn the oxygen up and I just paddle around. It is good exercise and helps my arthritic pains lessen. You aren’t doing anything wrong. Please don’t be hard on yourself.
Oxygen isn’t that bad. Sleep with the concentrator plugged into the wall. You can get around outdoors with the portable oxygen concentrator (POS). You wear it on a bag on your shoulder. Look around at the grocery store. I bet you’ll see two or three of them. I wear mine like a purse strapped across my body. It isn’t bad at all. I’m 63 so I’m not as vain about using it as I might have been when I was younger. There isn’t a cure, but you could possibly take meds that will stop the progression. The one I checked into was Esbriet. I am willing to try but I need to get approved for a grant or some kind of trial. Good luck to you. Fighting is a good idea. I think you have the right attitude.
No, I have Hypersensitive Pulmonitis, but I have some scarring and am in oxygen 24/7.
first person i have seen on this web site that had hypersensitive pneumonitis, that i was diagnosed @Mayo in Scottsdale in 02. treated with prednisone couple yrs and for ten yrs perfectly clear. then 10 yrs later ipf. i have been dealing with it for 6 yrs. i have been using Esbriet 6yrs and it has been very effective! but i use 4-5 ltrs oxygen 24/7 very little excercise because lack of stamina.i am also 80 yrs young.belive in Esbriet get off prednisone!
Liked by Colleen Young, Connect Director, Thomas1124
correction on Esbriet 3 yrs.
I saw my pulmonologist yesterday and I have to see an ENT doctor to try to get me breathing through my nose. Also saw an immunologist as my immunity number IgG is so low. It could all be tied together. Does IPF lead to all these other problems?
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
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