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    • #32461
      Allan Reinap
      Participant

      Hi everyone.  I’m almost 2 years into my IPF diagnosis.  Feeling okay. Only recently has my pulmonologist prescribed 2 liters of oxygen for sleeping.  During the day I feel okay, sometimes getting winded, but recover quickly.  Basically, doing well.  Traveling now.  My question centers around what to expect.  Have others found that sleeping with your head, or upper body elevated helps with getting a good night’s rest?  Now, I’m fine with sleeping the way I have always, comfortable on either side, sleeping soundly.  I do have that cough associated with IPF, but it only rears it’s head sometimes, and does not keep me up at night.  I’m just wondering if others have found it helpful to sleep on their backs with their head/upper body elevated.  Thanks

    • #32463
      Alan Jones
      Participant

      Yes i do it helps.

    • #32464
      Cecil Zlotnick
      Participant

      Hi All on the forum.  I’m interested to know the type of cough associated with IPF.  I have a cough with phlegm but think it is from reflux.  It occurs mainly when I’m lying flat on my back in bed at night.  I sleep on my side – can’t sleep on my back.  I’m on Esbriet and don’t know whether it causes reflux resulting in the coughing, or whether the cough is from the lungs.  Any ideas about it?

    • #32467
      Colin O Driscoll
      Participant

      Before my transplant, I suffered from CHP, another type of PF. As the condition progressed, it became more and more difficult to breathe while lying flat. A couple of pillows definitely helped.
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    • #32472
      Donald Salzberg MD
      Participant

      Hi. I do think it helps to lie on R side. Patients who suffer from AF (atrial fibrillation), especially if intermittent (paroxysmal) should be careful sleeping on their L side as it puts strain on the atria. Also its critical to be tested for OSA (obstructive sleep apnea)!!!  I have OSA and without my CPAP device Im a different person the next day. Exhausted. Many IPF gurus feel that sleep apnea is very much a part of pulmonary fibrosis. So make sure if you have/don’t  have OSA especially if you have PF. I don’t have a chronic cough but do have persistent mucous/hoarseness which is likely reflux related.

      Don Salzberg MD

      • #32480
        Virginia Currie
        Participant

        Same with me too. I find comfort with atleast 2 pillows at my back or lying on my left side with one pillow by my left neck.  Sleep is ok. I have to cough out secretions only throat and chest.  Then runny nose starts oozing out. When these secretions are out my breathing is better.  I have CHP as well.  Miserable with it.  I’m still working though but may slow down next year.

    • #32475
      Roger Cummins
      Participant

      It certainly helps me.  I’m 3 years in with SSc/ILD.  I have an aggressive lung disease so I’m always looking for ways to feel better.  One of the best things I’ve done is monitor my oxygen 24/7 with a wrist pulse oximeter.  When I was on 2L (now at 3L) I tried to use a portable POC at night and found that it just doesn’t work at night.  I had periods where my O2 dropped into the 70’s and also the “no breath” alarm would go off.  Turns out that sometime during the night I’ll start breathing through my mouth.  Now I use a face mask, and since I was already used to sleeping on my back (because of night cough early on), and now I only use my constant flow oxygen concentrator.  No more O2 problems at night.  Hope this helps’

    • #32488
      Christie Patient
      Moderator

      As others have stated, it does tend to help with SOB, but also importantly, it helps reduce reflux and/or silent GERD, which is a contributing factor to IPF.

    • #32496
      Desmond Sequeira
      Participant

      Coughing, on the insistence of my wife, is what got me to see my GP who sent me to a hospital and the chest unit there diagnosed I had idiopathic pulmonary fibrosis.  In the UK with free health coverage, seemingly an endless amount of testing follows, in my case twice a year each at two different hospitals.  Now twelve years on in my 92nd year of life, I’ve so far not been prescribed any treatment except to suggest I use a wedge shaped pillow to raise my chest to stop my constant early morning cough.  It works.  My morning cough (my faithful companion for twelve years), is more than less under control now. I’ve, by the way,  always slept on my back.  Also I avoid medicines and have not taken any for probably 30 years when I had a motorcycle accident when I took a pain killer and a sleeping tablet.  I won’t like to start again.  I think we should give a chance where reasonable, for our own internal ability to deal with the problem.  Healthy food, less meat,  yoga and meditation helps a lot I think.  However now in the last two years I have been losing weight,’. I’m not sure if it’s age related or due to IPF. Probably both.  I think the end of my days is due now.  I hope I’ll exit with grace and yield a place to our over worked NHS.  meantime I hope everyone of you will find your own way to cope.

    • #32499
      john styles
      Participant

      I sleep elevated, I also use a pillow length then horizonal. Maybe the length {of my body} helps push the deteriorating lungs higher, I do not know but I do get a lot of relief, if I eat after dinner even a oatmeal cookie { high fat } I have more coughing but am able to reduce or eliminate it with a couple of puffs of albuterol.  If I am out of control and eat to much its a lot of coughing and I break out the prescription cough syrup. I suspect silent Gerd is the culprit of our problems.

    • #32503
      Norman Wendth
      Participant

      I bought a wedge pillow. It’s really helps me now—a lot—but it didn’t at first. Only way to know is to experiment every few months.

    • #32539
      Allan Reinap
      Participant

      Thanks everyone for your insights into my question.  We had a chance to acquire a tempurpedic bed and took it.  Elevates head and legs.  I will try it out to see if it helps with my sleeping.  This forum is a great place to ask questions and find answers.  Thanks so much to the moderators!

      • #32597
        Christie Patient
        Moderator

        So glad you’ve found the forum beneficial Allan! Please let us know how the new bed works out for you 🙂

    • #32543
      Sally
      Participant

      Sleeping with the upper body elevated helps with a lot of things…….coughing, GERD, apnea, etc.  Please do not just put pillows under your head.  This makes you head bow into your chest area and compromises your breathing.  A wedge helps, preferably under the mattress.  Put the pillows under your shoulder/upper back for maximum help. Of course, the best solution is a bed that with which you can control the upper and lower body elevations.  I use the lower body elevated when my PH flares and my legs are swollen.  My daughter days I sleep like a taco !!

    • #32561
      Patricia Randa
      Participant

      I was diagnosed with Pulmonary Fibrosis in January of 2021.  I have and adjustable bed and am definitely more comfortable with my head elevated.

      There are times when I lie flat that I can hear my lungs making crunchy sounds.  They must be pretty scarred.

    • #32562
      Barb Kuester
      Participant

      I was told GERD/acid reflux impacts lungs and to sleep with head elevated.  You might also want to ask about a prescription for Nexium 40mg.

    • #32606
      Forrest
      Participant

      I’m 1 1/2 years into living with IPF. Early on I learned of Dr. Ganesh Raghu, Director of the ILD Program at the Univ. of Washington. His research and studies confirmed his theory that many of us with IPF suffer also from undiagnosed Silent Reflux. I saw an ENT Dr. who verified that and got me on Omeprazole. I take 20 mg twice a day. Along with altering my diet away from acidic and spicy foods this has eliminated the problem. Silent reflux micro-aspiration brings acid down into the lungs further damaging the air sacs. I got a pillow that elevates by head which helps also. My coughing has increased over the past year. However I’m doing well and still have good energy.

    • #32609
      Jill
      Participant

      Hi! Little bit of a rant here, and not exactly answering the question, but related. My husband with ipf was diagnosed last august with severe silent gerd as part of his transplant evaluation at St Joes in Phoenix. He was told to sleep elevated, double his omeprazole to 40g/ day, avoid acidy foods etc.  Since his gerd was completely asymptomatic, all of those lifestyle changes were  annoying with no subjective upside. He was put on Tyvaso and sildenefil to strengthen his heart (he has pulmonary hypertension) and they worked so well that he was able to have the gerd surgery (Nissen fundiplication) three weeks ago. Surgery went well and he’s been able to drop all the gerd lifestyle adaptations, thank goodness. He hated sleeping on the wedge and really missed chocolate and chile. The kicker is that when I asked his surgeon why they weren’t going to retest him to make sure the lifestyle changes and omeprazole hadn’t cured his gerd enough that he no longer needed the surgery, she said ,” oh, those were never going to help his gerd enough to avoid surgery. His score was 80.” Apparently doctors and patients start worrying when the score on the Messemer Scale is 17.5.
      Its very wonderful the heart treatment worked so he could get the surgery before a transplant, but super annoying they had him do those annoying lifestyle modifications that were never going to make a difference. As if he doesn’t already have enough unavoidable annoyances with this disease.

      So if your doctor recommends lifestyle modifications that you’d rather not do, make sure you find out what the goal is and why you should make them.

    • #32613
      george connell
      Participant

      I sleep in a recliner. My pulmonologist is in favor. I sleep soundly vs sleeping prone in bed. Big, big difference

    • #32614
      george connell
      Participant

      I sleep in a recliner. My pulmonologist is in favor. I sleep soundly vs sleeping prone in bed. Big, big difference

    • #32618
      Willie X Shapiri
      Participant

      My situation is pretty much like yours. I do get fatigued but, like you, I take a short rest and good to go.  I sleep on my back with my head elevated a little. I just put the bottom of the pillow under my neck and my head is cradled.  I also have a cough like yours. It comes in spurts.  I also exercise, very slowly, mainly a slow walk on the treadmill and stretches.  We learn what our bodies need as we go along.  One thing I have to say about the fatigue, when I have to rest, it’s overwhelming. So I try to rest immediately and I make a point of walking short distances outside in this heat.  I hope everything works out for you.  I hope for all of us who suffer with this.

    • #32629
      ChArles Bietsch
      Participant

      The primary purpose of head elevation is to prevent silent acid reflux from entering the lungs. There is a strong correlation between GERD and IPF. And several peer reviewed studies have been done to establish the connection

      If you have not had a 24 hour reflux test you may consider it to verify. If proven that you do. There are remedies to alleviate

      I had to have several before transplant, as it did play a role in my ipf

      Good luck with your battle. Exercise, eat smart and avoid acidic foods, keep a positive mind set

      You can also do an overnight oximetry test to determine if you desaturate while sleeping. Most people do as the heart rate slows.

      Regards

      Chas

    • #32631
      Jim
      Participant

      I was fiirst diagnosed in 2018 and have just recently started using supplemental oxygen for activities where I exert myself.
      At rest my O2 stays in the 90 to 95 range.
      I sleep with a Bipap machine but no oxygen supplement

    • #32638
      Dave Minsberg
      Participant

      Sleeping with my head/neck elevated seems to keep my hands from buzzing, loosing feeling and pain that wakes me up. Possibly nerve pinch in upper spine,

    • #32639
      Susan o
      Participant

      I sleep all over the place. On my back, sides, stomach n even at bottom
      Of bed. I wake up several times n change positions. Sometimes I use 1 pillow , sometimes two n if cough gets bad I prop myself up in almost sitting position with 3 pillows. Not the best night’s sleep
      But I when I wake up at 5 or 6 I move to the couch n get up by 7

    • #32640
      Margaret
      Participant

      I sleep with a wedge pillow and am fairly good about sticking to the suggested diet, omeprazole and anti-GERD protocols.  Four years ago I was hospitalized with a severe upper GI bleed.  I have never had any GERD symptoms but was diagnosed with esophagitis and Barrett’s esophagus.  I stuck to the recommendations of “The Acid Watcher Diet” by Jonathan Aviv MD for three months to help the healing.  I’ve relaxed what I eat a bit, but really miss carbonated seltzer (I won’t chance that.)  I also drink high PH water before going to bed.  Water with a PH over 8.5 deactivates the pepsin in the reflux.

       

       

       

    • #32665
      Ac Titu
      Participant

      Elevated head reduces the silent reflux and associated cough while sleeping.
      I understand, most IPF patients also suffer from GERD & Silent reflux and sleeping with head elevated definitely helps.

    • #32792
      Elaine
      Participant

      Hello – I got an adjustable tempurpedic bed and it was the best thing we ever did- once I go into a flare where the coughing becomes extreme – sleeping upright is an absolute must.

      I also found not eating late at night helped so much-

       

      i also just lost 33lbs and that has also helped a lot.

      good luck

      The coughing is the absolute worst thing ever 🙁

    • #32802
      Denise Stogdill
      Participant

      We bought a tempurpedic mattress and it’s the best thing.  Sleeping with my head elevated is the best for me!

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