Here’s What the PF Nose Knows About Congestion

Here’s What the PF Nose Knows About Congestion

Just breathe, passionate help for the PF journey
If you’ve read this column for any length of time, you know that I write about the everyday struggles as a pulmonary fibrosis patient. Congestion is a rather embarrassing topic for me to discuss, but here I go …

Nasal congestion

I have it a lot. I get congested even when I don’t have a cold or symptoms of allergies, such as itchy eyes. It’s quite perplexing and difficult to deal with at times. Sometimes it feels like I can’t breathe in enough oxygen through my nasal cannula because I’m so congested.

I’m on 8 liters of oxygen per minute sitting, and use liquid oxygen which doesn’t dry out my nose. I blow my nose a lot to expel the “crusties” that make it hard to breathe.

Some things I do that help a little:

  • Put on a mask for a while to get my levels up;
  • Sniff Dymista nasal spray (Rx) in the morning and at night to open up my sinuses;
  • Use a cool mist humidifier at night;
  • Clear out my sinuses with a hot shower.

And there’s one thing I just discovered that helps a lot:

I recently bought a SinuPulse Elite Advanced Nasal Sinus Irrigation System off the internet. It’s kind of like a Neti Pot, but a lot less messy. I irrigate each side of my nose with saline solution (I can make it myself with distilled water and non-iodized salt) while standing over a sink. It works well to loosens up what is clogging up my sinuses, making it a lot easier to blow my nose and breathe again.

The instructions say you can use it twice a day, but I’ve found this dries my nose out too much. I only use it at night before I go to bed, and use an over-the-counter saline nasal spray to help with this.

I’m grateful to come up with a solution that helps, but needing to put in so much effort into breathing can be tiring at times.

How about you? I’d love to hear from you!

Do you struggle with nasal congestion when you don’t have a cold? Has your doctor explained why this happens? What do you do to breathe easier when congested?

We’re in this together! Please share this post with anyone you think could benefit, or on social media.

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Kim Fredrickson is an Author, Blogger and Marriage and Family Therapist. She lives in Northern CA, with her husband of 40 years and has 2 adult children. Kim was diagnosed with Pulmonary Fibrosis in May 2014, as a rare complication from chemotherapy and radiation for breast cancer. Kim is the author of Pulmonary Fibrosis Journey: A Counselor and Fellow Patient Walks with You, The Power of Positive Self-Talk and Give Your Kids a Break: Parenting with Compassion for You and Your Children. Kim believes that learning to advocate for yourself with kindness and compassion, just as you would for a good friend, makes this difficult journey a little easier. In her patient column, she offers practical ideas to help us care for ourselves, fight for what we need, and process our many-layered emotions. Read more of Kim’s writing at www.kimfredrickson.com
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Kim Fredrickson is an Author, Blogger and Marriage and Family Therapist. She lives in Northern CA, with her husband of 40 years and has 2 adult children. Kim was diagnosed with Pulmonary Fibrosis in May 2014, as a rare complication from chemotherapy and radiation for breast cancer. Kim is the author of Pulmonary Fibrosis Journey: A Counselor and Fellow Patient Walks with You, The Power of Positive Self-Talk and Give Your Kids a Break: Parenting with Compassion for You and Your Children. Kim believes that learning to advocate for yourself with kindness and compassion, just as you would for a good friend, makes this difficult journey a little easier. In her patient column, she offers practical ideas to help us care for ourselves, fight for what we need, and process our many-layered emotions. Read more of Kim’s writing at www.kimfredrickson.com

35 comments

  1. Sandy says:

    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.

  2. Marilyn Olson Jacob says:

    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❤️

  3. Tina Huff says:

    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.

  4. Lea says:

    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!

      • Victoria Cameron says:

        I have used the Neti-pot in the past but I find bending over interferes with my breathing and makes my panic factor go up. I use a product by the same company NeilMed called NasoGel spray for dry noses. I spray and blow out as much as possible, sometimes even use a q-tip to get the thick mucus out, then follow with Secaris lubricating nasal gel. This has been very helpful especially now that it comes in a larger tube. It says on the instructions it is for the temporary relief of dryness and irritation within the nose and the relief of stuffiness and sneezing caused by sinus trouble. The respiratory therapist recommended this as it is ok to use with the liquid air. I am on 4 litres. When I get desperate, a cortisone spray is a good rescue but I don’t like to use it all the time.
        I sometimes have to sit up more for sleeping. If I am really congested, I have to get up and go through the process again.
        We are coming up on winter and that means more dry air. We have a humidifier on our furnace and that helps.

  5. Teresa Murdick says:

    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.

  6. Jim W says:

    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.

  7. George Barnes says:

    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.

  8. Paula Caravella says:

    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.

  9. Scott Felland says:

    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.

  10. Tom Nicholas says:

    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.

  11. Darwin Hindman says:

    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.

  12. Ron Cade says:

    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!

  13. karen blaeholder says:

    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?

  14. April says:

    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?

    • April, So sorry, what a scary experience. I would talk to your doctor. You may be able to use a mask instead where you breathe through your mouth. Call right away, you shouldn’t have to deal with this 🙁

  15. 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

  16. Susan stone says:

    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.

  17. Rachel says:

    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.

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