Here’s What the PF Nose Knows About Congestion

Yes Kim I do. Mine happens during the night making me feel like I'm not getting enough air too. I've found that a simple saline nose spray purchased at the local drug store helps to clear it up. My husband suggested it.

I agree with the congestion and use two prescriptions sprays Am and Pm that help a lot. I received a single left lung on 4/5/10 and overall feel good. Forever grateful to my donor and her family❤️

My father has IPF and has experienced similar issues. Have you ever tried "Simply Saline" saline spray/mist? It helps with congestion and moisturizing all in one. There is no limit to a number of times per day it may be used. Works just like a nettie pot. I am airline crew and benefit from this remedy also, especially because of the portability and ease of use. I now am able to fly several days a week without cracked, dry sinuses or congestion. Hope this helps if your doctor advises it's use.

This is a huge problem for me! Someone suggested an ointment, but I have lost the name of it! It seems that if my body gets an opportunity to grow a scab, I'll get one. If there is a cannula in the way, the scab grows over it! Ouch! Removing it in the morning gets painful!

Every morning, there is a lengthy cleaning and clearing process. A mask might provide some relief. I haven't tried one, but it's looking pretty good. Also, I've cut one prong off the cannula.

Seriously, I dislike going out in public or traveling because of what I perceive to be an ugly phase of lung disease.

Thank you for sharing your helps!

I also suffer from the congestion that hasn't yet been explained to me. I use neti-pot regularly, nasal saline spray, a lot of blowing and sniffing. It is embarrassing and at times painful.

The ointment recommended and which I use is called AYR. Has a cooling effect. But more important than this, I got the oxygen provider to give me a bubbler thing for the concentrator unit in the house and the O2 passes through the distilled water in the bubbler on the way to my cannula. No more scabs or bloody noses. Made a big difference.

You need to be careful with Rx nasal sprays. The body seems to know when something foreign arrives. You will end up using more and more spray for less and less benefit until, eventually, no benefit. My solution is to use "breathe rite" nasal strips. These strips open the nasal passages up to about 35% wider which greatly increases oxygen intake.

OMG, Thought I was the only one. Constant nasal congestion which gets crusty, then when trying to dislodge the crusty, I get nose bleeds. Without jinxing myself, I seem to have cut down on coughing up thick stuff. My dr. thinks its nasal drainage. I am not so sure. I will have to check out the simple saline. Tired of the congestion, crusties and then nose bleeds.

I think I have found a superior nasal mist. My wife suggested that I try the saline solution that she uses, Arm & Hammer Simply Saline Nasal Mist. They add baking soda to help clean the nasal passages and it is pressurized so the longer you hold the button the longer it is dispensed so you can really flush out the nose very easily with no squeezing necessary. I find it stops a runny nose also and has been working when my prescription sprays do not. We get the giant size in a 3-pack from Costco.

Kim...Over the years when my OTC allergy pills just "aren't enough", the 12 hour nasal sprays give me a terrible sinus headache and my canals feel like they are burning in he$%. So what I devised is using one of those empty "pump spray" nasal sprays, I pry off the top and I add about 2/3rds saline nasal spray liquid, then I add about a 1/3rd or less of something like Vicks 12 hour...shake it up and whack my nose with 2-3 sprays...worksd well...I get many hours of relief with no burning and no headache. crazy but it works great and is a cheap solution.

I have had success using Dymista, one spray in each nostril in the morning and the evening and saline nasal irregation in both morning and evening. I use a spray bottle from Walgreen's that contins a filter so that I can use tap water eliminating the need for distilled water and making it easy to get water at the right temperature. I use oxygen a night at 2 lpm and at 2 to 3 lpm during exercise during the day.

IPF patient here. The NEILMED Sinus Rinse spray bottle with and saline works well for me. I don't have to clean out my head often. Also I use INZO Barrier cream as needed for canula irritation, which has been seldom, thankfully.

Before my IPF I used Claritin generic for allergies. Generic is Kroger Allergy Relief, the same as Claritin and a lot cheaper in dollars. I continue with it, sometimes twice a day but I don't get outside much so I don't need it as often. Press on. Cheers!

Hi, my husband suffers greatly with IPF and constant sinus problems. Do any of you get nasal swelling along with the excess mucus and dry nose?

Newly diagnosed IPF patient here—I have the problem of swelling sinuses. For no reason that I can find, both sinuses will suddenly swell shut and I can only breathe through my mouth. At night it makes me sit up gasping for breath, heart pounding. During the day it’s equally awful.
Anyone else with this problem?

Thank you all so much for these comments ! I have been on 24/7 oxygen for 15 months
At present the flow is high flow 6 litres while sleep or rest
8 sometimes 10 for standing , holding pusher/walker and taking 6 steps :stop rest wait for heart to slow down and move six more paces,I have blocked crusty nose when I wake and need to clear it Normally three times a day ‘The “crust is massivej”
I put Vaseline ( yes I Know ! ) on a cotton bud and apply to both nostrils.By which time I need my cannula back on ASAP.after a couple of minutes I try blowing my nose to see if any crust or liver like substance ! comes out .Three blows and cannula back on fast
So I carry on until I have cleared blockage and breathe! I have only 25% lung capacity
I am 79 previously MCSP HCPC Physiotherapist

it sounds awful whst you are dealing with. They think that i may have IPF so i am very early stages and relatively good at the moment. I am thinking of you all. I think the website is a good form of support and encouragement to you all. Stay stfong and determined with each other.

Thank you, Kim, for wanting to hear from us. I have constant nasal mucus and am very desperate for any help that can be given. It started 6 years ago, when I was 28 years old, after a particularly bad cold, and it has gotten worse ever since. It is especially bad during and after I eat. It's almost like the act of swallowing triggers the mucus production in the back of my nose and throat. It used to take just 20 minutes to an hour to blow my nose after eating. Now, it has become where I am blowing my nose constantly, and for 10 hours straight after eating anything. I am down to one meal a day just to avoid blowing my nose for extra time. It is truly ruining my life. I can't even work, due to this problem. I have never been diagnosed, or tested, for cystic fibrosis, but I wonder if I have it. I tried contacting two pulmonologists, but they no longer offer the chloride sweat test. And the other test they would have me do would cause me to pass out, since I can't breathe well. I know this is gross, but I want to describe my mucus consistency, just to see if you think it matches the type of mucus you have with cystic fibrosis. Mine is clear, no discoloration or anything, and it is slimy. It reminds me of raw egg whites in that way. (sorry, I hope that doesn't put you off of eating eggs) Because of that consistency, it is hard for me to blow it out, or cough it up. I have to blow and cough with extreme force, which gives me headaches. I have gone to many ENT doctors, and none of them would believe me or help me, even though they could see the strings of mucus in the back of my nose (nasopharynx). They just gave nasal sprays, which didn't help and damaged my nasal membranes. Putting anything up my nose, especially liquid, feels horrible. I thought it was a problem with my adenoids, but those doctors said my adenoids were not swollen. It just looks like alot more mucus than what is typical. I do have a different condition involving my spinal and cranial nerves being compressed, and I heard that sinus and mucus problems can occur with that condition. But it's only with some people, and I don't know if they ever had it as badly as I do. I am having surgery to correct that condition, but I am wondering about this mucus problem. If it is part of that condition, then I know it will clear up after surgery. But if it is really something like cystic fibrosis, it would be a major problem for me in post surgery recovery.
Any advice you give would be greatly appreciated. Thank you.

I am a recent inductee to the Interstitial lung disease club! In just the last three months I have gone from playing golf and fishing, with the aid of a 4 litre inogen supply, to struggling to walk 25 paces on 10 litres to the bathroom and my oxygen dropping to 75%! I turn on my oxygen tank to 15 litres with a mask to recover for 5 minutes to regain to 94%! I use the high flow canula and can return to 8 litres at rest! My biggest issue is I developed sinusitis, my nasal passages swell shut during the night! I have tried saline nasal sprays, inhalers and using them before bed but when I least expect it, I wake up panting for air! I hope to get a lung transplant in Charleston if I live that long! I know I am on borrowed time and think a solution to my nasal issues will help! Any and all relevant information will be greatly appreciated! God bless us all to get relief! Thank you!