Pulmonary Fibrosis News Forums Forums Welcome Lounge Hard time Breathing in the mornings.

  • Hard time Breathing in the mornings.

    Posted by Noname on December 27, 2023 at 1:22 pm

    I was diagnosed with Progressive Pulmonary Fibrosis on August 16th 2023. Three doctors have told me this is what is going to take my life. I am using four different kinds of meds in my nebulizer. I have not been prescribed Ofev. I rarely get any sleep because I wake up from 1:30 to 3 every morning because I can’t breathe and I am coughing so bad. When the Dr. found this on the CT I had no idea I had it and I had just had a chest CT 3 months earlier and it was not there. I do not know what caused it. It is really bad sometimes. My Pulmonologist told me It is up to God and just pray. I respect him for that. I pray everyday for God to take this away. I was just wandering if anyone else has the problem in the morning like this. I do not get any rest and feel bad .

    alex-marion replied 1 week, 3 days ago 30 Members · 32 Replies
  • 32 Replies
  • Alan Jones

    Member
    December 28, 2023 at 9:39 am

    Me too,

  • rojelio-vargas

    Member
    December 28, 2023 at 2:14 pm

    I’ve had this condition for a year now . Diagnosed in Dec of 2021.it’s getting worse for me. Doesn’t seem oxygen helps any! Try walking back and forth? It’s helped me some times. There is not much helpful information out there, hang in there. Seek different opinions if you feel the need to! I’m on my 5th pulmonologist! Finally got one that is willing to try other ways ! Take care! Rojelio

  • paula-gee

    Member
    December 28, 2023 at 2:16 pm

    Hi there. My name is Paula. I have hypersensitive pnuemonitis which is caused by mold. I was diagnosed in 2015. Starting using oxygen in 2019. Has your Dr suggested or tested you for needing oxygen?

    Tried Ofev. Too harsh for me. I use Cell Cept, azithromycin 3 x a week, and 10-20 mg of prednisone. Seasonal allergies affect my breathing but being on oxygen makes a big difference to me. Keep asking questions and follow here, FB, and lung groups. There is great sharing and support. Blessings to you.

    Paula

  • don-moffett

    Member
    December 28, 2023 at 2:25 pm

    I have had Pulmonary Fibrosis for 2 years. I at times have breathing difficulties, my doctor put me on a Abunzinal inhaler twice a day, and if I experience difficulty I can add a third. It does the trick. Upon diagnosis, my Pulmonologist put me on OFEV 150mg 2x a day. It did take some adjustment, however I followed the routine, took advice from users on this forum and I have adjusted. I am fortunate that with the inhaler, OFEV and dietary guideline adherence, I have greatly slowed the progress. Don’t let people scare you away from OFEV, I admit it is a hard adjustment, but considering the alternative, it is well worth the effort.

    • SallyB

      Member
      December 29, 2023 at 8:28 am

      I agree with getting onto Ofev as soon as possible. It does have side effects (nausea and diarrhea, for me), but those can be managed. I take Ondansetron (a prescription anti-nausea med), which works well for me. Also Imodium for the diarrhea. I think it’s well worth the effort, and Ofev seems to have greatly slowed progression of my fibrosis.

  • kim-morrison

    Member
    December 28, 2023 at 2:55 pm

    I am not a Dr and do not claim this will work. I did some research and am taking Haritaki ( buy it on Amazon) some studies say it reversed PF in mice. I have taken it for about a year and my symptoms have improved dramatically. Of course always talk to your Dr before taking anything!!!!

    • Wes

      Member
      December 29, 2023 at 8:49 am

      kim, do u take ofev? i read that haritaki can cause diarrhea, but that is good for lungs… i have IPF and taking ofev, which gives me episodes sometimes with spicy food.. do you think the haritaki is helping you ? thanks wes

    • alex-marion

      Member
      February 12, 2024 at 3:15 pm

      Hi Kim:

      I know you take ofev along with haritaki, and i am reading that you got excellent resluts in your last lft, and hrct. My question is, how mucht do you atribiute haritaki to your exceptional progress, compared, to your diet excersise and ofev. I m a caregiver to my wife, and so far she is 100% symptoms free and with the help of some manuka honey she got a lot better with some irregular coughing, more related to asthma than her IPF. i gould like to introduce her into haritaki as well as green tea extract,as she refuses to start with ofev, as her doctor considers it is way to early to start due to her recent early diagnosis.

      thank you

  • tammylewis21912yahoo-com

    Member
    December 28, 2023 at 3:03 pm

    Hi.I was diagnosed 3 years ago,not yet on oxygen.Mornings are the worst, alright as long as I’m laying flat,as soon I sit up,put my feet on the floor, coughing starts, mucus.This is about one hour.You’re not alone in your battle, everyone here, understandsWe’re here for you and your family

  • frog

    Member
    December 28, 2023 at 3:05 pm

    you need to get on ofev as soon as you can , it will help . Also I take Guaifenesin 400 mg to help release the mucus in the lungs . I buy it from amason 300 caplets for around 12 bucks

  • Larry70

    Member
    December 28, 2023 at 3:14 pm

    What medications are you using in your nebulizer? I haven’t heard much about nebulizer treatments for people with PF that often. I wonder if you might also have another condition alongside your progressive Pulmonary Fibrosis. Perhaps some kind of steroid medication to reduce inflammation. Everyone likely has very different takes of this but if my pulmonologist started talking about being in God’s hands or similar – I would quickly be looking for another pulmonologist – or at least a second opinion. Maybe saying something like that in a hospice setting would be appropriate but otherwise seems a bit off and would make me suspicious about what else might be off.

  • paul-b-lakeland

    Member
    December 28, 2023 at 3:48 pm

    Hello, I can’t believe your pulmonologists have not suggested Ofev or the other specialty med that slows the progression. I used to cough really bad. That has subsided. Please get another opinion. I traveled 2 hours to Univ of Fl to get a second opinion and I could not be happier with my team there. Let me know how it goes. Paul B ~ Lakeland, FL

  • steve-dragoo

    Member
    December 28, 2023 at 4:20 pm

    I was on my own medically for 4.5 years in the Philippines so I researched a lot of different supplements BUT there are many types of IPF and my type inhalers don’t help – so what helps me may do nothing for you or worse – cause an adverse reaction. At 74.6 years with other issues and over 7 years into IPF I am also willing to experiment on myself but I don’t recommend it…

  • michael-mcfadden

    Member
    December 28, 2023 at 4:22 pm

    I was told by A pulmonologist that I have PF (no test other then a PFT) suggested that I start two expensive and harsh drugs. Went to a city hospital pulmonologist who could not see PF on my CTs or X-ray but did see burnt out sarcoidosis. My cardiologist does a EKG and said I need to go to the emergency hospital immediately, turns out that I have PHT (side note while in hospital visiting Dr said “maybe it is time to pay the piper” similar to what you’re Dr said to you) started taking two meds for PHT and a diuretic now don’t need O2 for most things and stairs. Oh and 1st city hospital Dr recommended me to a different Dr in a different city hospital that was a pulmonologist that specializes in PHT. Moral of this post get second opinion and some Doctors say sh-ty things.

  • terrig

    Member
    December 28, 2023 at 4:31 pm

    You need a new pulmonologist! Yours told you it’s up to God and to pray?! That’s it? That’s all he can do for you? What a load of crap. Praying is all fine and dandy, if you believe in it, but there are some amazing drugs on the market that could possibly help you and slow the progression of your PF. I have ILD with PF and am on CellCept & Ofev. Yes, both cause challenging side effects, but I tolerate them knowing they could extend my life. Seriously, I suggest you find a new doctor. Good luck.

  • Dawn

    Member
    December 28, 2023 at 5:52 pm

    Hi,

    I’ve was diagnosed a few years ago. In the beginning my coughing was very bad. My physical therapist recommended lots of water (for me it’s 64+oz) to thin down mucus, it works very well for me. Then when starting an anti-inflammatory diet it improved even more. Try to notice if certain foods trigger coughing spells or other things like aromas, molds, etc., then avoid if possible.

    After rising in the morning I do PF exercises to get my lungs moving and active, followed by a breathing trainer (I use AiroFit) that strengthens my thoracic muscles. It exacerbates coughing a lot! But after I’m done I cough less the rest of the day and I feel like I’ve given my lungs a workout, which is so important with PF.

    Also, I am a complete believer in prayer! But that is an insensitive way for a Doctor to behave, I’m sorry they treated you like that! Get the medicine, take pulmonary therapy classes, and get moving. If you are desaturating while moving get oxygen and exercise even if you turn up the dial to 15L. You have to move your lungs and get the mucus out of them. And, DRINK lots of WATER! I’m praying for you, the Lord knows your name 😉.

    KIM (Keep It Moving) ,

    Dawn

    • Debbie k

      Member
      January 30, 2024 at 8:53 pm

      Hi Dawn. My name is Debbie. Just wondering what you mean by pulmonary therapy? I tried pulmonary rehab and failed. I can’t walk more then 10-15 ft and I’m not breathing well

      I’ve been on Ofev for 1 1/2 years had to get off I had every side effect that was posted plus some very odd ones I was dealing with ulcers all over and ended up needing grafts and wound treatments for months it was horrible also explosive diarrhea 3-4 times a day Again horrible none of the medication helped me enough So my doctor said no more I was so weak He felt I couldn’t try anything in the shape I was in Asked about the other drug and he didn’t think my body could tolerate any more I have a lot of other medical problems

      Anyway do u know of a O2 concentrator

      that goes to 15 L I only know up to 10 I’m already at 8 or 9 was told that 10 was it

      U responded to someone to go up to 15L

      If that machine is available I would love to inquire about it Maybe where u live they have different things I’m in a suburb of Chicago

      Sorry this message is all over Not sure why and don’t know how to fix 😊

      TIA if u can help me

  • john-penn

    Member
    December 28, 2023 at 8:18 pm

    In reading your post though I was so happy to hear that your physician said to pray for your health and thought I would share some of my journey with IPF with you. I was diagnosed in October of 2017 and have been on Esbriet since. I do have breathing challenges but my IPF has not progressed much at all since initial diagnosis. What did occur this past year though was I received a diagnosis of small cell lung cancer with a very large mass in my right lung. For the remainder of 2023 I was getting chemo treatments along with radiation that were completed on December 3rd. This is where I believe prayer came into play. have had CT scans and MRI and the mass cannot be detected at all at this point. With all the chemo and radiation there was fear that my IPF may kick into high gear. This has not been the case thank the lord. There has been many hours of taking to god, committing myself to the lord and learning that he does take care of those that believe and honestly make him the center of their life. I cannot predict the future but I know that it was thought I might not make it until Christmas and here I am getting ready to celebrate the new year feeling better than I have in a long time. The power of prayer is real. Your doctor is spot on. Give it to god. He really does care. I pray for all of you on here with this awful disease. You don’t have to go it alone. God is waiting to hear from you.

    Good bless you all..

    • Noname

      Member
      January 29, 2024 at 8:06 am

      Thank you so much for your encouragement. I pray every morning when I am up at 3 am or before while I sit and struggle to breathe. I am having another CT scan today to find out the progression of my Progressive Pulmonary Fibrosis. I will be going to Winston Salem, NC tomorrow to see my pulmonologist.. I think he will probably put me on Ofev as he has mentioned it in his notes. I pray God touches each and everyone on this forum that has this terrible disease. It has changed my life in so many ways. I can not do a lot of things I use to do because I get SOB. I live on a farm and can not help like I use to. But I know God can heal me. Anyone that has true faith and believes knows God is with us all.

  • carl-stidsen

    Member
    December 28, 2023 at 8:36 pm

    I was diagnosed late in life at 75, – 5 years ago and given the standard 5 year death sentence . My Pulmonologist put me on oxygen immediately and on Palliative treatment ( read : check in every six months or so and do a Breathing test every 12 months to chart my downward progress. ) Rather than take whatever breathing machine Medicare would graciously allow me , I researched Concentrators , found one I liked and bought it on my own nickel. ($2200 or so) Insofar as Ofev and the other major drug, the price quoted for those two drugs was in excess of $70,000 annually with no guarantee of anything, except side effects. (Thanks a lot) . I prefer quality of life to quantity so have skipped all the drugs and plan to just use the Concentrator for as long as I have left. I sing in my Church Choir , drive , walk and get involved in my hobby passions and in community and social activities .That all seems to help in lieu of breathing exercises. We are all going to die from this condition – so accept your fate and live the rest of your life ( whatever time God grants you) as best you can. . Yes I cough at night and occasionally during the day and now sleep in a recliner with my concentrator on all night at 2 LPM, which helps. The condition is getting worse . No kidding…..

    • Larry70

      Member
      December 30, 2023 at 2:07 pm

      carl-stidsen, From what I understand – If you have a medicare plan D coverage (or something similar with a medicare advantage plan) they should pay for most of the coverage for Ofev. I don’t yet take this but I asked my Medicare person and they said I would only be responsible for a little less than 3K per year for Ofev and that Medicare plan would pay for the rest.

  • GCKaren

    Member
    December 29, 2023 at 6:38 am

    Have you checked into an AffloVest? My husband began using it a few weeks ago and it has helped his cough and breathing tremendously. He uses it twice a day for 30 minutes.

    • SallyB

      Member
      December 29, 2023 at 8:35 am

      I use an AffloVest for mucus removal and it works great. There are other percussive vests, too. Airway clearance is really important, and there are numerous techniques for doing it. Check out the Cystic Fibrosis foundation website – CF patients must do airway clearance, too. Also YouTube – search for airway clearance. This all takes some research to find what works for you, but you can get all the mucus out and will feel much better for it.

      • DMR

        Member
        January 25, 2024 at 1:05 pm

        I had a lot of mucus which really caused issues with my breathing. After doing some research I found Mullein tincture and tea. I chose the tincture at a health food store and have been taking it 3 weeks. It has really helped me with the mucus and my breathing. My oxygen is now at a steady 95 and I sleep much better.

  • jimbo7

    Member
    January 23, 2024 at 12:08 pm

    I was diagnosed with idiopathic pulmonary fibrosis in 2017 and have been on pirfenidone for 6+ years. I receive a VA disability for IPF due to agent orange/herbicide exposure. If anyone was a Vietnam Vet and has IPF, you too deserve a disability payment. You will need a nexus letter from a pulmonologist supporting your claim.

  • blucoyo

    Member
    January 23, 2024 at 4:37 pm

    The first thing I’d do is find another pulmonologist. Than get on either of the medications.

    Best wishes,,,😃

  • samuel-kirton

    Member
    January 23, 2024 at 6:53 pm

    I read your profile to understand a bit more about your journey. Can I ask why you are not eligible for transplant and if you are being seen at a PFF Care Center Network site?

    Sam…

  • cpfeln

    Member
    January 24, 2024 at 10:59 am

    I agree with some of the others, get a new doctor. There are many different treatments and medications out there. I was prescribed Trelegy an inhaled combination of three medications. It was a game changer for my cough. I no longer wake up with the cough. I also put a humidifier by my bed so I am not waking up so dry and congested. Unfortunately we have to be our own advocate with this disease. I went for 6 months misdiagnosed by my primary care. If something is not working for you tell your doctor or find a pulmonologist that works for you. Good luck and don’t give up.

  • conni

    Member
    January 24, 2024 at 11:01 am

    Have to say I agree with those who replied that you should find another doctor. Just telling you it’s up to god is a lousy way to help someone. If you have a university hospital anywhere within 3-4 hours go there they at least will have whatever might help.

  • bootgirl

    Member
    January 24, 2024 at 2:29 pm

    I see you live in NC also. Have you considered going to Duke for 2nd opinion and treatment options?

    My husband has familial pulmonary fibrosis. He is up to 8L of O2 during waking hours, and less at night.

    Trust you can get some good answers and help!

  • jayme-patton

    Member
    January 25, 2024 at 3:04 pm

    Get a second opinion, unless you’re a heavy drinker, drug user or have other issues a transplant could possibly an option. I was fortunate enough to have pulmonologist that referred me to Vanderbilt and I went from being ignored to getting a transplant within weeks.

  • patricia-meadows

    Member
    January 30, 2024 at 10:24 am

    My “credentials” re PF: I was diagnosed with autoimmune PF in 2013, and my boyfriend had a lung transplant four years ago. Something he finds helps enormously with the cough that was interrupting his sleep is not lying completely flat in bed. He has a remote-controlled mattress and raises the head just 3 – 4″. A less pricey option is a wedge that can be put under the mattress to raise it, or just a firm pillow or two to raise the head and the chest.

    Not having good quality or quantity of sleep can sure affect our quality of life. Hope this helps.

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