Mayo Clinic Connect
Is there any one out there that has PF?
new here. I was diagnosed with COPD and IPF (by biopsy at the Cleveland clinic in 2014), and have been using Esbriet (9 caps per day) since then. I now keep an oxygen tank with me (2 liters) and my nebulizer or inhaler with me at all times. I cough insistently and quite often violently. We’ve tried omeprazole for acid reflux and sodium chloride (with my albuterol in the nebulizer) all to no avail. I often get headaches from coughing so much and we ( my doctors [ I have 3 pulmonologists, one in my state, Cleveland clinic, and VA]) can’t figure out just why I cough sooo much.
I still do weight training (sometimes with my oxygen on) until muscle failure (I have longer rest periods between sets that’s all) but am unable to do any cardio. When I get winded I start my coughing fits. I also use a brand name menthol lozenger to help sooth my throat and somewhat control my cough.
I have sleep apnea and use a Cpap machine with 2 liters of oxygen infused during my sleep time. Yet I’m not bad enough for lung transplant consideration.
Climbing stairs is a chore and I get being out of breath a lot, but the coughing is the worse(I’ve fractured my ribs 5 times in two years because of it (I’ve learned to keep my mouth wide open when I cough to lessen the pressure on my torso, and it helps, although unsightly). My worse times (outside of my weight training) is first thing in the morning ( I am of the opinion that the mucus builds up while lying flat) and just before I go to bed for some reason (haven’t a clue why that is). I’d be lost without my nebulizer, as it is the best relief I get from my coughing. In addition I have a percussion vest I use twice a day to help break up all that sputum, although when I was in rehab, they used a vibrating tool which help much more.
I’ve snow birded this winter and just a city away from a lung institute and with a phone conversation they say I qualify for a stem cell treatment. They do it in two different way, stem cells from your blood, or from your bone marrow. As stated by someone else, it”s not insurance covered and quite expensive. My doc in Cleveland is skeptical about it, as well as I am (if it’s to good to be true……..). So with all this said, I do my best to try and control it as my as it control me.
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Good for you! Keep up the great work you are an inspiration!HugsLw
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?
Of course, I will keep positive or not so positive info I learn as we continue this journey to better info and better health Thanks for the info re:serrapeptase. Have a good day.@tula
want to find a place that has reserce for pulmonary fibrosis.And I can’t sleep at night.
Hi Shann, I have IPF, I use a Cpap machine with oxygen infused and I sleep rather well. Still cough sometimes at night but at least I get the rest I need. Perhaps they could do a sleep study on you.
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.
What is the reason for possibly changing his medication? I have been on Esbriet for over a year now and am curious, what I have read about nintedanib side effects seems to be extreme compared to perfidenone.
Hi. About one month today, simply by examining the chest x-ray, my doctor told me that I had interstitial pulmonary fibrosis.I wonder if stem cells will soon work miracles. I have been searching the net for whatever new research has been done in this area and would certainly like to know more about this.
I am in Florida for the winter and a lung institute is just in the next city over. I called them and they explained they do two types of stem cell treatments. One is using the stem cells from the blood and the other is from the bone marrow. Price was around $6000 for blood and &12,000 for the bone. No guarantees on it, except they’ll take your money for sure. I have IPF and am looking for that cure all too, however, if it’s to good to be true………….At this juncture I am hesitant to embark on this journey as my Pulmonologist (Cleveland Clinic) is a skeptic because of the lack of research out there. That’s what I have found out from talking with the lung institute. It’s a tough decision.
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.
Sorry to hear of your diagnosis, I had a tough time carrying around an oxygen bottle where ever I went, but you get use to it (and usually glad you did). I still play golf, judo’s for your softball cause it calls for running which I miss very much. I do rigorous weight training WITH my oxygen bottle with me and it helps me recover quicker. If I get to winded I start coughing like there is no tomorrow (a well brand name cough suppressant helps sooth my throat and the coughing and on the wrappers it has little quips that motivate me to push harder). I watched the video of lung transplant from Mayo and it was interesting, but not necessarily for everybody I found out. I’m 68 and won’t let “it” define me either. Keep on keeping on and stay positive.
Liked by jms7
Hi spicegirl, I tried serrapetase for two months and didn’t feel any different, (maybe expecting to much to soon, I don’t know). IF you CT showed the fibrosis was gone did you feel an increase in your lung capacity for breathing again? How long was your period of taking the enzyme?
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
My doctor and I were trying to figure out why I cough so often and violently with my IPF. The acid reflux avenue was a shot in the dark hoping “it” was the cause of my coughing. Nah, that was a bust. I didn’t know that a person “could have acid reflux and not know it though. On to more trial and error on my coughing, hopefully we’ll run across something that helps.
Hey Shann and Steve,
Did you know that there is a new Sleep Health group on Connect. You may interested in checking out the discussions there. Steve, I bet you’d have some relevant and useful contributions to make to the CPAP discussions. See the Sleep Health group here https://connect.mayoclinic.org/group/sleep-health/
Liked by Linda, alumna mentor
yes recently diagnosed with interstial fibrosis looking for people with disease and their symptoms and progression? Donna
I went in the hospital for what I thought was a heart attack it turned out to be a false alarm although when my dr came in to discuss the cat scan told me I had IFP kinda through me for a loop I have a consultation set up for later this week and a second appointment set up in 5 weeks which I believe will be for another c scan or image to see the progression he did mention that it is very early because I have no symptoms. I have acid reflex for the past 10 years or so.
Recently diagnosed with IPF too have not smoked since 1975 then light smoker but around smokers thur years. Wondering how fast this disease progresses do not have appmt. with pulmonologist until end of March hope he can give me more info
you might try the mayo clinic transplant department. in general transplants candidates have strictt criteria.
you can investigate sites like this but the bottom line is that there is currently no cure for iPF. There is a lot of drug trials going on that look promising. there is a weekly IPF newsletter that list current and proposed drug trials. The government has a listing of all current and proposed studies and drug trials. do a search for government drug trials to get the url. this site won’t all me to post it.
I am taking the drug for over a year now. there is no way to tell if it is doing anything. it is very expensive and i have to take 9 caps a day. the only thing i can say is that it sees to have slowed down the progression. I was dx in 2008 and am still alive. the main things i have found useful is exercise, treadmill 15 or 20 minutes a day. I have recently stated on 02 which helps quite a bit when excepting.
I use an over the counter drug to control the acid reflux. prescription drugs have a lot of side effects which i dont think it is worth the risk to take when the over the counter drugs work fine.
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