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    • #13042
      Kathy
      Participant

      About 3 1/2 yrs BEFORE I was diagnosed with PF – I saw an interesting segment on good ole “Dr. Oz” – I was interested because he had a specialist on talking about the relationship between acid reflux and asthma.  That having indigestion and/or reflux during the night when your laying down can cause you to breath the acid into your lungs which can cause infection in the lung – coughing etc. So they said that if you wouldn’t eat anything except water 3-4 hours before bed you would significantly reduce symptoms – – – hey I was sick of coughing  & coughing so was more than willing to give it a try.  It was amazing the difference – – very quickly – – I told all my friends – anyone that would listen – and my family noticed that my wheezing was much better.  So a couple of months later went in for my yearly blood work and to get PX’s refilled.  I eagerly told my doctor what I had been experiencing – she listened to my lungs and said – well you sound like a perculator to me so ordered an xray – I was shocked because I didn’t feel in the least that I was wheezing  – interestingly that Xray is how IPF was discovered in my lungs so badly scarred – BUT the sound ended up being a hiatal hernia.  But I found myself in this fight – – so I still really really protect my lungs from reflux.  However taking antacids with many meds should not be taken 4 hours before or after so another thing to check for interactions – because they can bind with some meds like Plaquenil preventing your body from absorbing it.  Give it a try – don’t eat 3-4 hrs before going to bed – only water – and see if it helps wheezing.

    • #13047
      Sheila Blanchard
      Participant

      Hi Kathy I get acid reflux a lot, I try to watch what I eat but as I don’t eat much anyway it can be hard. I have been thinking of getting an adjustable bed but I will try your remedy to see if will help me.thanks Kathy

       

      • #13079

        Hi Sheila,

        I struggle with this on occasion as well, and an adjustable bed might be a good idea – although a hefty investment. I haven’t tried the no eating 3-4 hours before bed either, but am going to try it now that Kathy has mentioned it. Another thing I’ve heard about from lots of folks is the foam wedges and sleeping with one of those under your shoulders to prop you up a bit. This helps with the acid reflux and cough relief. Apparently they can be found on amazon. This is something else on my list that I need and want to look into!
        Best wishes to you 🙂
        Charlene.

    • #13051
      Lesley Scheerle
      Participant

      Hi to all acid reflux suffers. It’s been my curse for so many years I can hardly count back that far. I too don’t have anything to eat or drink after 8p.m. But I have one exception. I have a full glass of water before bedtime to hopefully dilute the acid in my stomach. It seems to work well. Another thing I have done is buy a “WEDGE PILLOW” for bedtime. I even put another regular pillow on top of this one to be as elevated as possible. It takes some getting used to, but helps a lot. Lesley

      • #13081

        Hi Lesley!

        It is so great to hear from you – Ive been wondering how you are, and glad you’ve reconnected with the forums. Hopefully you’ve been busy enjoying yourself and not online much due to that 🙂

        Sorry to hear of your acid reflux struggles – this must be super frustrating for you! I mentioned the wedge pillow idea above in my response to Sheila, before I’d read your comment. I remember you  so kindly sharing this with me and others, saying it was very helpful for you. I do have to look into this, I haven’t done it yet, especially if you say it alleviates the coughing. This is what I struggle with most at nighttime now and the dry cough seems to be getting worse. Thanks for the reminder!

        Hope you’re doing well!
        Kindest regards,
        Charlene.

    • #13052
      Robin Hollowell
      Participant

      I was diagnosed with Pulmonary Fibrosis this past December.  My Dr is referring me to Johns Hopkins, as he has not labeled it IPF as yet.  He said that I do have reflux, although I really haven’t had the classic symptoms.  The gastroenterologist said that my reflux would not be the cause of the fibrosis.

      I am now on medication for reflux and actually notice more symptoms of it now.  Not eating too late before bedtime is more of a challenge than I realized.  I am doing better at it though.  I did purchase an adjustable bed made by Serta.  Surprisingly, the cost was not that bad.  I love it, and can’t imagine why I hadn’t purchased one years ago.

       

      • #13082

        Hi Robin,

        Welcome to the PF forums, and thanks for contributing your comments. Although I am very sorry to hear of your PF diagnosis last December, please know you’re among friends who share similar experiences on this site. Has anyone in your family ever had PF, or did you work/live in an environment where your lungs  could have accidentally been exposed to mould or other toxins? Hopefully the specialist at Johns Hopkins can give you some more answers, and good to know that the reflux is not the cause of the fibrosis. My Mom struggles with acid reflux really bad, although has no issues with her lungs, but I do worry about it impacting her lungs in the future.

        You notice more symptoms of the acid reflux since starting the medication for it? Is it an over-the-counter medication or prescription?

        So good to know about the adjustable bed, I know Sheila is interested in maybe purchasing this so hopefully she reads this comment 🙂 Glad the cost wasn’t astronomical too! If it helps then I suppose it is worth it, right? Glad you’ve found this remedy for you!

        Thanks again for sharing and I look forward to getting to know you more throughout the forums.
        Kind regards,
        Charlene.

    • #13078

      Hi Kathy,

      Thank you so much for posting this topic thread, as it seems many people have experienced something similar to you or have found your post very informative.

      Sometimes Dr. Oz can have some interesting show topics, and validity in his guest speakers and topics on the show. I haven’t watched his show in forever, but I too would have been interested in this topic. Oddly enough, I’ve never been asked about indigestion or acid reflux and for almost a year between the onset of symptoms and my diagnosis, they thought I had adult-onset asthma. I am also sick of coughing at night, or any time I lay flat, so I’ll try to avoid eating 3-4 hours before bedtime as well. I also try to have a lighter meal for dinner generally to avoid feeling full longer or closer to bed time.

      In addition to your x-ray, did you ever have a high-resolution CT scan as well (HRCT)? I know this can be very informative in the diagnosis process too. Interesting that you thought your wheezing and lungs seemed so much better and then the x-ray revealed IPF, such a bummer! I think it is a good idea to still protect your lungs from reflux, I agree with you there, so thank you for sharing. I am going to adopt your no food for 3-4 hours before bedtime rule and see if it helps me.

      Thanks again for sharing Kathy. It’s great to hear from you and I hope you’re doing well!
      Charlene.

    • #15039
      Fitri Topikal
      Participant

      daun kenikir untuk asam lambung very interesting./ thnks

      • #15062

        Artikel menarik, matur nuwun. Wong mungkin kudu nerjemahake sadurunge sadurunge bisa maca kanthi lengkap. Salam, Charlene.

    • #15091

      Has anyone tried getting a prescription for an adjustable bed to see if insurance would cover it? It was just a thought as I have seen insurance pay for some pretty odd things. Just throwing that out there.

      • #15143

        Hi Michelle,

        Thanks for your post and your contribution to this thread. This is a good idea, I know some patients with PF have benefited from being raised up to help reduce their coughing. It would be really nice if the cost of a raised bed would be covered by insurance, I agree! I haven’t heard of anyone doing this but good idea. If anyone has tried this, please do let us know.

        Warm regards,
        Charlene.

    • #15104
      Jennifer
      Participant

      Hi Michele, I am new to this forum due to being diagnosed with IPF  last month. I sleep on wedge pillow, with another one on top of it, to help reduce my reflux. Going to my  pulmonologist  This Thursday to get the results of the HRCT that was done in October. I don’t know if there is any connection between the two but hope to here some answers. Sure would like to know about the sleep numbers bed and insurance myself. It would so help our reflux battle. Jennifer

      • #15144

        Hi Jennifer,

        Thanks so much for contributing to this topic thread, although so sorry you’ve joined us with such a recent diagnosis. This disease is so cruel, isn’t it? How did your follow up with the HRCT go yesterday? I’ve heard lots of people say their doctors have made a connection between IPF and reflux unfortunately, so hopefully there is something you can do to alleviate any / all IPF-related symptoms by addressing the reflux. Sleeping with a wedge pillow is a great idea, I’ve heard of a lot of people doing this!

        Warm regards,
        Charlene.

    • #15122
      Raymond C. King
      Participant

      Hi,

      I have been reading this forums posts and I would like to share some information that might help anyone with the acid reflux problems. I have had the Acid Reflux problem interment for over 50 years. I have had 3 Hiatal Hernia operations locally and even one other at Mayo Clinic to try to help with the acid reflux problem.

      In early 2011, I had one Hiatal Hernia operation that ended up causing me to have a frozen stomach requiring me to now take all my food supplements and medicines through a J-Tube that bypasses my stomach and goes directly to my small intestines. In late 2011, Mayo Clinic tried to help with the problem and have determined I have no Hiatal mussel therefore I have a straight shot from my mouth directly to my stomach, so stomach acid can flow freely from my stomach to the esophagus causing the acid burn.

      Since 2011, I been sleeping on my back with my upper body elevated approximately 30 degrees in a hospital type bed. This has helped but I still get the night time acid reflux burn. Naturally my regular Gastroenterologist has me on Nexium 2 times per day to help reduce the acid but that doesn’t always help. I still get the reflux especially if I accidently slide down a little in the bed while I am sleeping.

      Now for what I have that seems to help with the nighttime Acid Reflux.

      While I was in the hospital about 6 weeks ago getting a new J-Tube replacement in my belly, the hospital Gastroenterologist was visiting me and I told her of the acid reflux problem I was still having. She said, “you have the same problem my husband has had for years and he has been taking a non-prescription pill and he swears that it has helped with that problem”. She said, “I don’t remember the name of it but if you call me, I will find out and let you know”. I called her a couple of days later and she told me “it is called EsophaCool by LifeExttensions.com. At LifeExtensions, the price was $9 for 60 tablets. I purchased a bottle of it from Amazon.com Prime for a little over $10.50. That costs about $0.17 per tablet. I bought it at Amazon because I have Amazon Prime and that gives you 2 days free shipping and I could get it faster. I have tried using EsophaCool for about 3 weeks. When I chew 2 tablets at bedtime, I have never had acid reflux at night. I tried just taking one chewable tablet at night and I woke up during the night feeling I was starting to get the reflux problem and then I chewed another and went right to sleep the rest of the night. From now on, I’m not going to skimp on chewing the 2 tablets. After I chew them, I usually sip a little water to wash them down. They have a medium licorice taste, so if you don’t like licorice after taste, you may not like them. Somewhere, I have read that taking black licorice helps people with acid reflux problems and this tablet doesn’t say it has any licorice extract in it, but it tastes like it. Anyway, you might give it a try if you want. Maybe it will help.

      I do have a lot of medical problems and take lots of medications. I guess it comes with being 83. I also have IPF and I am trying to take Esbriet for that. Starting Esbriet ended up with my having a bleeding stomach ulcer, so I have stopped for it to heal for 30 days. I think I am a Guinea pig for the company that makes Esbriet as I must take it crushed and inserted into my intestines. Esbriet doesn’t know if it is possible to be taken that way. All they know is it must be taken uncrushed and with food. I can’t eat food, and the crushed Esbriet bypasses my stomach, so Esbriet doesn’t know what that may cause. My Pulmonologist wants me to try again shortly anyway but to take the recommended doses at a slower rate. He isn’t sure if I can ever work up to a dose that will do me any good. Time will tell.

      I hope any of this helps. Good luck with whatever you try.
      Ray King

    • #15146

      Hi Ray,

      Wow – thank you so much for sharing your experience with this. For those suffering with acid reflux, this really could be a game-changer for them! I hope they also find the chewable EsophaCool helpful, what an “easy” fix if it works for others (sounds positive for both you and the Doctor’s husband). I truly hope others can try this and that it is effective for them, thanks for sharing the experience of getting it off Amazon Prime as well, including the price and how many tablets to take. I’m so glad at least this symptom is being managed for you – you deserve something to go right for you! I noticed you posted about the re-start of Esbriet as well, I’ll respond to that in a moment and am really hoping it is going okay so far. I’ve been thinking of you!

      Sorry for not being able to reply as thoroughly as before, I’m taking on additional duties/responsibilities within the Pulmonary Fibrosis Forums and News columns, but I often wonder how you’re doing. Things here are going pretty well, I started a new pulmonary rehab regimen that I think is helping me breathe a little deeper which I am happy about. The cooler weather here now that autumn is upon us is also welcomed, although the dampness (it’s been raining for days!) can subside anytime soon!

      Hope you’re doing well and chat with you soon,
      Charlene.

    • #15152
      Sheila Blanchard
      Participant

      Hi Charlene, I did in fact purchase a adjustable bed it has helped my acid reflux at night but still have it during the day. I am also on a CPap machine which may be helping also. I had an appointment with my pulmonary Dr. and the results of my tests showed that my Fibrosis has not gotten much worse just a little so that was good news. Lately I have noticed pain in my shin bones does anyone else have this? Or maybe it is not because of my IPF.

    • #15158

      Hi Sheila,

      Thanks so much for sharing this with us, it sounds as though an adjustable bed might be an option for folks who struggle with nighttime acid reflux. Where did you purchase it, and/or did your insurance cover any of it? Did you start on the CPAP because of the acid reflux, or to help more with your breathing from IPF? I’m really glad to hear that the fibrosis in your lungs hasn’t progressed too much, that is good news! In terms of pain in your legs, I have this often but generally it is throughout all of my legs. I actually have tried different remedies to help alleviate restless leg syndrome, but nothing significant in terms of anything being able to help. Is this a new side effect for you? If so, probably best asking your doctor about but I would imagine it could be IPF-related based on the leg pains that I (and I know others as well) have experienced.

      Goodluck!
      Charlene.

    • #15616
      Jea Graitch
      Participant

      Hi Everyone,

      I know it has been tough dealing with acid reflux together with indigestion and IPF. There have been several ways to ease the pain including the choice of pillow to be used when sleeping. Having the best pillow to take care of your acid reflux, indigestion, and IPF will definitely make your sleep soundly.

      Below is a link of an article to know which pillow suits you better.

      I hope these pillows will help you eliminate the pain causing you while sleeping or just resting in bed due to acid reflux and other ailment related to it.

      https://softerpillow.com/best-wedge-pillow-for-acid-reflux/

      Best,

      Jea

       

      • #15691

        Hi Jea,

        This is a really interesting link, thanks for sharing it. I know several members of the forums have mentioned their use of body pillows or other “prop-up” pillows to help them with indigestion, along with reducing the chronic cough of IPF while sleeping. Hopefully this link helps them as well – glad you’ve joined our forums and thanks for sharing 🙂

        Cheers,
        Charlene.

    • #15622
      Raymond C. King
      Participant

      Hi Jea,

      I read your post on the wedge pillow. I have had one that appears exactly like the basic one that you referred to for several years. I only now use one when I travel.

      The things that I didn’t like about it is: I find it uncomfortable for my head. The foam makes it kind of hard and I have to use another softer pillow for my head. If you use an extra head pillow, it forces you to slide down a little on the wedge, so you lose some of the wanted elevations of the upper part of your body. You can’t slide the pillow up higher as it will fall behind the top of the wedge unless you pile other pillows or items behind it for the extra soft pillow to lie on. Another problem I have is while asleep on it, you tend to eventually slide down on the pillow.

      The only remedy I found was to rent or purchase a bed that will let you elevate your head and feet. After you set the upper body where you want it, you still need to elevate the feet too. This makes a pocket for your hips and stops you from sliding down. I rented one from a medical supply store for almost a year before I purchased 2 of the adjustable beds from COSTCO, one for me and one for my wife. You can either use them like a single bed slid together or place them like twin beds in different locations.
      They have a variety of them there. It was delivered to the house and set up for us before they left. They come with remote controls. My son and daughter later purchased a couple for their house also.

      I note that they are also available at Amazon too. I think they don’t come with setup though. I imagine you can get them at other places. We just searched online for them when we bought them.

      I don’t know if you read my October 31, 2018 post above, but I referred to my trying EsophaCool Since the middle of August 2018. It is non-prescription. I have still been chewing 2 of the tablets with a little water each night at bedtime and I haven’t had any acid reflux since. I don’t know what makes them work but for me, they seem to work. I don’t have any reflux problems in the daytime, so I haven’t used them, but a person can the label says. On my visits to my family doctor and Pulmonologist, I told them about what they had done for me. They both told me to bring the bottle on my next visit, so they could see what it was, so they could maybe suggest it to some of their patients. They kind of have a little liquorish taste. My pulmonologist said he thinks the problems I have had with the acid reflux is what caused my IPF.

      I purchased my esophageal at Amazon:
      https://www.amazon.com/Life-Extension-EsophaCool-Chewable-Tablets/product-reviews/B07C9H3M4N/ref=pd_lpo_vtph_121_tr_cr_0?ie=UTF8&refRID=8PJVT4PWGJEFK4B68QYD

      You can also get them at the company that makes them at LifeExttensions.com:
      https://www.google.com/search?ei=jOMPXNb-KbTs9AOmq4DIAQ&q=lifeextension.com+EsophaCool&oq=lifeextension.com+EsophaCool&gs_l=psy-ab.12..33i22i29i30.115066.115066..116934…0.0..0.94.94.1……0….1j2..gws-wiz…….0i71.8-h-BSBpIWw
      https://www.google.com/search?ei=jOMPXNb-

      Good luck with whatever you try. The reflux problem is sure a pain to put up with, as you know. I have tried about everything on the market to try to stop it. I have been taking 2 prescription Nexium pills per day and other things to help relieve it for years to help combat the Acid Reflux. I hope the EsophaCool and other things to help relieve it continues to work.

      Keep us posted on what works for you.

      Ray King

      • #15692

        Thanks for sharing all this helpful information Ray, and I am so glad to hear that the EsophaCool is still working for you! I remember you sharing that information with us a few months back, and am glad the update you’ve written to Jea says that they’re still working for you. I do wonder what it is that makes them so effective, but the most important part is that they are helpful 🙂

        Thanks for the information about the beds as well, I know this would work for a few others who are struggling with the indigestion and IPF. Glad you’ve found something comfortable that works for you.

        Charlene.

    • #15631
      Forrest
      Participant

      I have a question perhaps the form people might advise me on.  I have been diagnosed with IPF since May of 2015 and am currently on oxygen 24/7 at about 2 l/m, and am doing quite well.  Last summer (of 2018) I went through Pulmonary Rehab here in Portland, Oregon, where I live and I would recommend it highly to every IPF patient.  There were 24 secession, two secession a week for 3 months.   In the first secession I started walking on the treadmill using my Portable Oxygen Concentration (POC) cranked up to 4 l/m – my usual procedure on the treadmill at home, but the nurses found that my O2 stats were dropping into the mid-80% and they were alarmed.  So they put me on continuous flow O2 from a tank at 4 l/m, and the difference between the POC pulse O2 and the continuous flow O2, both at 4 l/m, was significant: even walking at 5% grade and 3 miles/hr my stats stayed over 90%.   Now science has shown clearly that if there IS a wounder drug, it’s excersize.  But the studies of Pulmonary Rehab show that those who go through rehab improve significantly during rehab, but drop back to slightly lower than before in the months after; and I fear I am falling into that same problem, not because I don’t have the gym facilities where I live – I do, but I don’t have access to portable continuous flow O2 when I excersize!

      I need my POC when I am out of the house, and it also allows me to fly, something I can’t do with O2 tanks.  But Lincare, my O2 provider, says I can’t have both a POC and the small portable O2 tanks I need to excersize properly!  So my question is, has anyone else in the form had a similar problem, and if so, how did they solve it?

      • #15693

        Hi Forrest,

        This is a really interesting post, and something for folks to consider. Thanks for sharing your experience with pulmonary rehab – like you, I found it extremely helpful and beneficial went I also went through a 12-week program. I’ve since done it again actually and continue to learn more each time I attend. Will there be an  opportunity for you to complete another session of pulmonary rehab in the future, do you think?

        Regarding the POC vs. tanks, I ran into this problem as well here in Canada. Unfortunately, my option was to have the 02 tanks covered or a POC from my oxygen provider but not both. Having both was considered a “luxury” (as if, right?) and both wouldn’t be covered. It sounds like you still like to fly/travel, and I do as well so it was really important to me to have a POC but I had specific needs/uses for the o2 tanks as well (ie. continuous flow) and couldn’t buy those. As a result, I chose to purchase my POC which was expensive but now it’s mine and I don’t have to worry about going without o2 tanks because my oxygen provider still covers those so I have them for my needs, and then I travel or take the POC on errands/out of the house. I know not everyone has the financial means to purchase a POC, but this is the route I went and I’d highly recommend it. Not sure if this helps at all? Just make sure the one you purchase is right for your current o2 needs and if possible, can grow with you if your needs increase. Hope this helps a bit. Feel free to connect anytime!

        Warm regards,
        Charlene.

    • #15636
      Jacki Baum
      Participant

      I too suffer from acid reflux, have for years but is much worse since my diagnosis of IPF. I now get violently ill at times.  I take 40mg of perscription Omeprazole before I go to bed at the direction of my Dr.  Sometimes we eat later and then I may have a problem.  We have an elevated bed and it does help.  Of course, like the rest of you, I worry that all that acid is hurting my lungs.  Had an endoscopy and colonoscopy a few months ago since I was having acid reflux and diarrhea.  All was normal, so I was thankful.  I am not on oxygen and take 100mg of OFEV twice daily.  Was on 150 but the side effects were too debilitating so my Drs lowered the dosage.  Told me it was not as effective but the quality of life was more important than longevity.   My choice.

      • #15694

        Thanks for sharing Jacki, glad you’ve found a balance of prescription medication and the raised bed as helpful for you. Has the reflux significantly subsided since you’ve implemented these “tools”? Glad the smaller dose of Ofev is better for your side effect management as well. I’ve heard of a lot of folks going down to the 100mg vs. the 150mg due to the quality of life they get with the lower dose. Keeping my fingers crossed that it continues to be effective for you.

        Warm regards,
        Charlene.

    • #15642
      Brian Sowter
      Participant

      Hello everybody

      I live in the UK and have a very unusual form of reflux because it has been caused by an operation I had 50 years ago.  Highly selective Vagotomy… for stomach ulcers before the invention of modern antacids.  The vagotomy was not selective enough and it has destroyed the functioning of my Lower Esophageal Sphincter.  The operation also disabled my Pyloric sphincter at the bottom of the stomach.

      I recently had an impedance and manometer test and the result was a DeMeester score of 115 (the normal 2 sigma result is 14).  Se very unusually bad!

      I only got a good diagnosis about 2 years ago at the same time as my IPF was diagnosed. Till then I was having dumping syndrome and all the symptoms of reflux…chest pains sore throat croaky voice, runny nose, and almost certainly, IPF.

      I now practice extreme management of the reflux.  Diet, mini meals, max dose of 3 kinds of antacid, not lying down within 3 hours of eating or drinking. Sleeping on a sloping bed.  no tight clothing etc.  I take Ofev for the IPF.

      I feel very well these days and my IPF has not got any worse.

      I know this will be of minimal help to most people with IPF and I am sorry for that.    I just hope that good management of reflux may help somebody.

      To any UK readers may I wish you a happy Brexit!

      • #15695

        Hi Brian,

        Really interesting information shared, although so sorry to hear the reflux problems resulted a secondary issue from your previous surgery. Sounds like you and Ray both ended up with reflux issues following the same/a similar surgery. Your tips on how you manage it, which you outline below, will certainly be helpful to others I am sure. Thanks for sharing those, and wishing you the best at continuing to manage your reflux and IPF.

        Take care,
        Charlene.

    • #15653
      Raymond C. King
      Participant

      Hi Brian Sowter,

      It sounds like you have been experiencing the same problems and use some of the remedies that I have been trying.

      I too had a partial Vagotomy performed on my first hiatal hernia/fundal plication surgery back I 1973. The Vagotomy used to automatically be done on the earlier hiatal hernia surgeries to prevent the buildup of stomach acid. They have later learned that many bad things can happen when they cut those nerves. I think my main stomach vagus nerve hadn’t been cut until my second hiatal hernia surgery in 2011. That surgery also caused my Gastroparesis and 80% paralyzed my stomach and the surgeon also punched my ectolophs too. I ended up after that surgery going to Mayo Clinic in Phoenix Arizona where they again tried to redo the previous hiatal hernia surgery and tried to readjust the Fundal Plication part to tighten it up to recreate the destroyed upper stomach sphincter. It didn’t work, and they told me that I now have a straight shot from my mouth to my stomach. That is when my Gastrologist prescribed the two Nexiums (now prescription Omeprazole because it is cheaper) two times per day. I guess the Omeprazole helps but I still had some acid reflux problems and I have been doing things to help eliminate them. See my earlier posts.

      I imagine my pyloric sphincter was damaged during the several Hiatal hernias that I also had. I have never been told that it was damaged but sometimes at night, I get nauseated and throw up. What I am throwing up it does not contain regular food particles. I throw up what looks like the contents of the Neutron feeding that I am taking into my intestines all night thru a J-Tube. There is no way the Neutron should be getting back from my little intestine into my stomach if the pyloric sphincter is working.

      I also developed the chest pains, runny nose and had a dry cough. That is when my regular doctor took x-rays which later was determined I had IPF. I had previously been taking prescription Norco (Acetaminophen & Hydrocodone) for the pain my J-tube was causing and hadn’t had the chest pains or a dry cough. After 5 years of taking the NORCO, I tried to wean off from it and that is when the chest pains and dry cough started. I later went to my Pulmonologist and he said a hard-dry cough was causing the chest pains and to try taking the Norco again. The pains and IPF a dry cough almost immediately disappeared so I am back on Norco 4 times per day.

      I hope some of our posts help people with their reflux problems. It surely isn’t fun.

      Ray King

    • #15668
      Paul
      Participant

      Had acid reflux all my life, probably the cause of my ipf. I have struggled with acid reflux since taking esbriet. I have reverted to the old remedy is drinking baking soda with my dose of meds. Definitely works . Not sure of effect on meds. Advice?

       

    • #15696

      Hi Paul,

      Thanks for getting in touch with us, and sharing your solution to dealing with the acid reflux since beginning Esbriet. I’d actually never heard of drinking baking soda to reduce this issue, and would imagine it is very unpleasant, is it? I know if it works then it is probably worth it for you, but I just can’t imagine giving that a try. I’d definitely check with a doctor about the effect on medications (if any) or what it could be doing internally to you as I think baking soda has some chemicals in it. It may not be alarming/concerning at all, I’d just want to verify that with a doctor ahead of continuing to do this. Best case scenario, it won’t cause any issues and you can continue using it as an effective means to managing your reflux. Sorry I don’t have any more to share regarding this, but do let us know if you follow up with the doctor and he/she says its fine for you to continue doing this and that it has no impact on the medication.

      Goodluck, and hope you continue to do as well as possible.
      Charlene.

    • #15782
      Josie
      Participant

      Hello

      Interested to see this thread, as I was recently diagnosed with both PF and with GERD. I’m now being referred for a gastroscopy (after the ENT found acid damage to my vocal cords) so that they can take a look at my oesophagus, stomach and small intestine.  It seems like there is an increasing amount of literature discussing the relationship between acid reflux and fibrosis. I was wondering if anyone had gone the surgery route to stop the acid reflux; i.e., fundoplication. And if so, did it slow down/stop the progression? I’ve heard there have been some promising clinical trials of this approach in the US.

      Josie

      • #15787

        Hi Josie,

        Thanks for getting in touch with us and good questions. Yes, unfortunately the acid reflux/GERD seem to be linked via both literature and other forum members’ experiences. Sorry to hear you’ve been diagnosed with both – did your doctor suspect the GERD causes your PF? Sometimes they suspect so, other times they don’t. Goodluck with your gastroscopy, I hope it reveals some information for you that is helpful in the management of your symptoms. Off the top of my head, I can’t think of any forum members who’ve mentioned having the surgery to reduce the acid reflux symptoms, but definitely connect with Ray (see below) who has dealt with acid reflux for many years. Wishing you nothing but the best.

        Happy holidays,
        Charlene.

    • #15783
      Raymond C. King
      Participant

      Hi Josie,

      There are a lot of articles on the Internet that will give you information on GERD and IPF. You can go to this link and it will give you a lot of information on it.

      https://www.google.com/search?q=does+acid+reflux+cause+ipf&oq=does+acid+reflux+cause+ipf&aqs=chrome..69i57j0l3.15966j1j9&sourceid=chrome&ie=UTF-8

      Here are a couple of the items listed from the above link:

      1. IPF is strongly associated with gastroesophageal reflux disease (GERD), a condition where stomach acid flows back into your esophagus. It’s estimated that 90 percent of people with IPF have GERD.

      2. Ulcers — Ulcers can form in the esophagus as a result of burning from stomach acid. … The acid can be inhaled into the lungs and cause a type of pneumonia (aspiration pneumonia) or asthma symptoms. Chronic acid reflux into the lungs may eventually cause permanent lung damage, called pulmonary fibrosis or bronchiectasis. Sep 4, 2018

      Also, this forum seems to really help for getting other people’s experiences with IPF and its suspected causes.

      You might be interested in a few of my earlier posts on this forum if you haven’t already read them.
      Raymond C King: Participant
      1. OCTOBER 31, 2018 AT 10:39 AM
      2. DECEMBER 11, 2018 AT 11:21 AM
      3. DECEMBER 12, 2018 AT 11:04 AM

      I have had serious Acid Reflux Disease for over 50 years and several surgeries to try to stop it. So far, a few of them helped a little but I listed one pill I am taking now that helps well along with using other things at the same time, I think. I am still trying the non-prescription pills and will post it’s progressing as I use it for some time. Stay tuned!

      Raymond C. King

    • #15788

      Thanks so much for such a great reply to Josie, Ray. I’m sure she will appreciate hearing about your experiences and what has been helpful for you. Its so kind of you to share! 🙂

      Charlene

    • #15808
      Rene Hakkenberg
      Participant

      Hi Josie,

      I was diagnosed with IPF in 2017 but study of earlier CT scans showed IPF type lung scarring since 2014 which was missed by my doctors. When doctors were doing tests when they diagnosed the IPF it was shown that I had a severe case of acid reflux and as reflux is suspected, though not yet scientifically proven, as a cause of IPF my doctor suggested a Nissen Fundoplication. This operation resulted in major stomach functional complications, such as becoming ill about once weekly with vomiting and further unwanted weight loss. Recent addional tests (endoscopy, pH impedance, manometry and gammagraphy) revealed that the Fundoplication had failed and that the reflux was still there and that the stomach problems with vomiting were probably caused by stomach nerve damage during the Fundoplication. Redoing the Fundoplication was not recommended and I am now on acid reducer Landsoprazole, sleep with a wedge pillow and don’t lie down a couple of hours after eating. Lung function tests show that there has been no IPF deterioration since about one year. I believe that strenuous exercise, up to 7 hours per week of spinning, TRX, abs and breathing exercises (at reduced intensity, always using a finger oximeter and staying above 88% O2 saturation) has contributed to my IPF not getting worse. That’s why I strongly recommend to all you IPF sufferers to exercise as much as possible to make those damaged lungs work.

      I wish you all the best on this Christmas Day!

      • #15826

        Hi Rene,

        Wonderful reply to Josie, thanks so much for the effort and thoughtfulness that went into your response! This online community is filled with such wonderful people 🙂

        Really glad to hear your IPF hasn’t progressed much, and that you’re still able to exercise, likely contributing to keeping your lungs as strong as possible. Kudos to you, as I know this is not an easy task when faced with a life-threatening lung disease. On this flip side of that, I am really sorry to hear of the complications that came from the Fundo surgery – how awful! Hope the strategies you’ve put in place since then are helpful with the reflux.

        Enjoy this holiday season, and hope you had a wonderful Christmas.
        Charlene.

    • #15815
      Josie
      Participant

      Thank you so much Rene, Ray and Charlene for all the information. I hope you all had a lovely Christmas and are enjoying a relaxing Boxing day. Ray and Rene, I’m sorry to hear that efforts to alleviate the GERD have not been successful, and that surgery is not necessarily going to fix the problem. I’ve started sleeping a bit more upright, and taking PPIs in the morning as well as Zantac in the evening, but the reflux is still happening. My shortness of breath seems noticeably worse right now. Does it happen episodically, or does worsening mean more fibrotic activity happening? It’s got me rather anxious now, which of course doesn’t help either. I am trying to exercise a lot more, doing stairs and squats and so forth. But I don’t know enough yet about what is safe exercise. Are there types of exercise one should avoid with this condition?

       

      All the best to you for the holidays.

       

       

       

       

      • #15825

        Hi Josie,

        Thank you for your kind words – my Christmas was lovely, thank you and Boxing Day was quite relaxing, I hope yours was too! I couldn’t imagine fighting the crowds to shop like many people do on Boxing Day, that would drive me nuts. How was your Christmas?

        In terms of the shortness of breath episodes, if I can share my experience, this tends to happen episodically for me if I am stationary and not doing anything physical. If I am exerting myself, ie. walking a long distance then unfortunately the shortness of breath is quite present. However, sometimes I find even sitting on my couch watching a movie, I can become short of breath and my heart really palpitates during that time too. Thankfully it doesn’t last a really long time and not all the time, which is why I don’t believe it necessarily means a worsening of the fibrotic tissue in my lungs. I’ll find that out in January though when I go back for my scan next month. Any chance you have a bit of a cold that might increase the shortness of breath episodes? Any congestion or sign of a cold, and I experience this.

        In terms of exercise, do you have a pulse-ox reader? You should be really careful when exercising with this disease and should have your abilities assessed by a physiotherapist or doctor, even if you don’t feel like it is a struggle to exercise. This is because your oxygen may drop during strenuous activity without obvious symptoms of this happening and any sats under 90 means your other organs are struggling to get enough oxygen, potentially causing damage. Is someone always home with you when you’re exercising? This would be my other advice, just in case you experienced sudden light-headedness, etc. I hope I’m not overstepping by sharing this with you. I had my abilities assessed to exercise, both my breathing (and my oxygen requirements, which I always have to have on while exercising) and my heart-rate too.

        Wishing you all the best, and please continue to keep in touch.

        Warm regards,
        Charlene.

    • #15849
      Rene Hakkenberg
      Participant

      Hi Josie,

      I believe that having up and down periods of breathlessness is normal. I think they call it an exacerbation when it is worse. Could be caused by many things, like a cold, being tired, not sleeping well, etc.

      About exercise, there are two kinds, one to build muscle, including abs, and the other aerobic/anaerobic exercise. Strengthening your muscles is always good and the aerobic exercise makes your lungs work, which, I believe, is extremely important for us IPF sufferers. My lung function test and CT scan show no deterioration in the recent 6 months  and I credit my exercise for that, although in life nothing is 100% certain. When exercising use a finger oximeter and slow down when you reach 88%. Obviously my 200 mg of Ofev daily also contributes although my stomach will not tolerate the recommended 300 mg.

      I wish you a great New Year with IPF in remission,

      rene

       

       

       

      • #15882

        Great reply Rene! Thanks for the breakdown of the two different types of exercise, I need to do better at remembering both and working on the muscle strengthening – I believe this would greatly benefit me!

        I think the periods of breathlessness are normal as well, unfortunately. I am fighting a bit of a cold / sore throat at the moment so I am finding I am short of breath more often too.

        Hoping you had a wonderful holiday and all the best in 2019!
        Charlene.

    • #15890
      Rene Hakkenberg
      Participant

      Hi Charlene, thanks so much for your reply. I also wish you the very best for the NewYear, with the hope that it will be the year that the medical world will find a cure for our common disease, which, considering the progress of present research being done is not such a far fetched hope. Get rid of your cold and sore throat, and please be assured of the gratitude your IPF family has for you for all you do for us with your constant positive, caring and supportive messages. Rene

    • #15893

      Hi Rene,

      Great to hear from you, and thank you so much for all of your kind words: I am so lucky to be part of this IPF family as you put it so well! Wouldn’t it be amazing if 2019 saw a cure, or at least, a significant break through in research about how to get rid of IPF? I agree with you, I don’t think that is too far off and hoping we all can be sustained until then. Wishing you a wonderful year ahead and looking forward to our continued friendship.

      Cheers,
      Charlene.

    • #15894
      Josie
      Participant

      Good morning Rene and Charlene,

      Thank you for all the great advice. I bought a wedge pillow for sleeping, which seems to help, and I bought an oximeter. So far my readings seem quite good, except my pulse is always a bit high. I’ve started on a daily regimen of strength training and aerobics, and am being careful to watch for 02 saturation as recommended. I appreciate the advice on that. I also find the oximeter helps me to not panic when I get out of breath, as it seems my 02 is still ok, so presumably the breathlessness isn’t having a big impact on oxygen in the blood yet. Hopefully the exercise can keep it stable. Best to you all and happy new year.

      Josie

       

      • #15910

        Wonderful Josie, I am so glad you found the suggestions helpful and that you’re feeling more comfortable exercising with the o2 probe. I also find it reduces my anxiety when I am worried about feeling breathless, and I see the numbers still in the 90s, it really helps me! Really glad to hear the wedge pillow helps for sleeping as well 🙂

        I hope you have a wonderful new years Josie, and wishing you all the best in 2019!

        Charlene.

    • #15896
      Rene Hakkenberg
      Participant

      Hi Josie,

      I am definitely no expert but some advice from experience:

      Good you bought a wedge pillow, it should help against reflux. Remember to move it down your body so that the narrow edge of the wedge is near your hip, just below your waist. That makes sleeping easier, but may put the additional pillow beyond the high edge.

      Also good that you are exercising and that your O2 saturation is in a good range. If your saturation is ok and you still are out of breath, that means you have to improve your condition. Walking stairs and doing quads (walking, biking) is very good and if done sufficiently your condition will improve, leading to less breathlessness while keeping your oxygen within correct bounds. And hopefully making your lungs work will reduce or stop further worsening of lung fibrosis.

      I am fortunate to be in touch with a world renowned, cutting edge IPF  researcher and he gives me confidence that good medical news for IPF sufferers may be coming next year or the year after. Fingers crossed!

      rene

       

       

      • #15911

        That is such great news Rene, gives many of us hope! I am really glad you shared that 🙂

        Thanks for all the advice you provided to Josie as well, I’ve benefited from it and found it helpful as well as I embark on trying new/more exercises to help my lungs in 2019. I appreciate it, and the time you took to share it with us.

        Cheers,
        Charlene.

    • #15897
      Josie
      Participant

      Hi Rene,

      Thank you – I think, based on your advice, that I wasn’t using the wedge properly so will adjust it tonight. Yes, I think I need to improve overall conditioning, and now am very motivated to do so! (I’m 54 and really not interested in cutting my life short!!). That’s awesome that you’re connected to an IPF researcher and that there may be some good news coming: I look forward to learning more. Where are you located Rene? I am in Toronto.

      Josie

    • #15899
      Rene Hakkenberg
      Participant

      Hi Josie,

      Interesting that you live in Toronto, although I do not envy the cold weather that should be there now. I used to visit friends in Toronto, but unfortunately they are no longer with us.

      I am a Dutch citizen, did my university at McGill in Montreal, and after working there for one year I moved to Bonaire, Dutch Caribbean and have lived there since, with an 8 year interruption when I was in Pennsylvania, USA.  My IPF research contact is based in New York.

      Don’t know if this site is suitable for this private stuff?

      Absolutely, no way we are going to shorten our life’s just because of IPF, we’re going to beat it or at least stop all progression.

      happy New Year

    • #15912

      Hi Rene and Josie,

      If you felt more comfortable exchanging information, you can directly message each other on this site too, it is kind of like private emailing. Not saying you have to, your content is totally appropriate but just something to keep in mind if you’re interested 🙂

      To do this, just click on the other persons name and then under their profile you’ll see a blue button that says “private message”. Not sure if this is helpful, but just an option…

      Josie, we’re not too far away from one another! I am going to try and arrange a visit with Sandy, who is moving to Toronto while she awaits her lung transplant, to see if we can go for dinner or something in Toronto. If we could arrange it, would you like to join us? Let me know, and of course no pressure.

      Cheers,
      Charlene.

    • #15921
      Raymond C. King
      Participant

      Hi Rene,

      WOW! Your post just killed what I thought might be a cure-all and might stop people from getting IPF. Most of the people I have been reading about on the forum seem to live in Canada and the cold northern US hemisphere. I was all ready to move south to a warmer climate. Then I see you live in Bonaire, Dutch Caribbean and have lived there most of your life and still ended up with IPF. There goes that remedy but saved me a lot of money. I don’t know how you ended up there but I Googled it and it looks like a really nice place to relax and we must pay to just visit there.

      Thank you for your post about the possible IPF help by the IPF researcher that you mentioned. I’ll be watching and monitoring what he/she comes up with. So far, I am out of luck with using some of the drugs that can prolong your life.

      We just had 4-inches of snow shoveled off our walks and driveway.

      I hope things turn out well for you.

      Have a Happy New Year.

      Ray King

    • #15922
      Raymond C. King
      Participant

      Hi Josie,

      I am happy you are trying out the wedge pillow. I hope it works well for you. I have had one for 6-years but just use it when I travel someplace. It worked fairly well but I just kept sliding down on it to where it kept me awake a lot at night just repositioning myself up on it. While elevated on it, it would work until the slide down.

      I use a hospital type long twin bed which works pretty well. I can adjust the head up to the suggested 30 degrees or more and then adjust the foot part of the bed up to where it’s kind of forms a pocket to hold me from sliding down. The bad part is you have to always sleep on your back but for the wedge pillow to work you have to anyway. I do kind of try to angle my body a little so I am a little on my left side. My Gastroenterologist said that tilts the stomach up a little so the esophagus is a little higher than the stomach. I am taking prescription Omeprazole 2 times per day.

      If you are interested in renting a hospital type bed, they are available through a medical supply store. I don’t know what medical insurance you might have but I know some will cover the rent if your doctor prescribes it. They covered mine until I decided I wanted one that was a little longer and had a remote control to adjust the head heights. .I am almost 6 ft tall so I purchased one It seems hospital beds are a little short for me.

      I guess you been to a Gastroenterologist if you said you were going to have a gastroscopy? Has he/she suggested a Hiatal Hernia operation? Sometimes they work and sometimes they don’t.

      Good luck with whatever you try. A lot of people try a lot of help but I guess it just boils down to whatever you find that works for you are what works for you.

      Take care of yourself and have a Happy New Year.
      Ray King

    • #15923
      Rene Hakkenberg
      Participant

      Hi Ray,

      well, despite the 4 “ of snow, I am glad you have not lost your sense of humor. Just be happy that you read my post and you saved all that money. But you’re right, one might think living for 42 years in a small Caribbean island, with good air and lots of sea food and diving but too much sun, one may not get IPF. Wrong! The only cause I can think of is that stomach acid travelled up the esophagus and entered the lungs. I have been told that acid in the lungs is like putting acid in your eye. As mentioned before I had a Nissen Fundoplication operation which was supposed to take care of my reflux, but the operation turned out to have failed. So now I am on Lansoprazole and my wedge pillow. I also have a problem sliding down, but I just climb back up….

      yes, we keep our fingers crossed waiting for that cure….it’s coming, so is Christmas even if that’s a whole year off.

      you too, best wishes for the new year, not too much champagne tonight, not good for reflux…haha

      rene

      PS, come visit and we can compare notes, snorkel and eat fish.

      • #15938

        Hi Rene and Ray,

        Really interesting conversations going on here – I too, am guilty of wondering if a cold environment/hemisphere contributed to a higher likelihood of developing IPF. This isn’t a theory I read anywhere or anything, just something I often pondered about as I know environmental triggers can cause lung damage in other contexts. Looks like I was wrong as well, Ray! However, I still think moving to where Rene is would be worth it for me, haha!

        What is your care like there Rene, are there many PF/respiratory specialists there? Curious how they are approaching the treatment of IPF, although likely following the bigger centres lead in terms of prescribing anti-fibrotics, oxygen, etc. Hopefully you’re really happy with your care and I am glad to hear of your connect in NY, that will be interesting to see what is revealed in the upcoming year about the management of this disease. Hopefully it is good news for all of us!

        I want to take you up on the offer of coming to visit Rene  – I’ve never been to the Caribbean and have always wanted to go! Plus, I love sun, sand, seafood and my favourite place in the whole world is the ocean! Actually, just today I was looking at all-inclusive vacations to get out of the Canadian cold winters.

        Chat with you both soon, and Happy New Year.
        Charlene.

    • #15925
      Brian Sowter
      Participant

      Happy New Year Everybody!

      A quick tip for wedge users when travelling:  I ask the hotel to provide 2 extra pillows then I put one under my shoulders and 2 under my head. It really works and in fact one is less likely to slip down the wedge.  I also sleep on my left side which puts the top of the stomach an inch or so higher because of the way it lies in the chest.

      • #15946

        Hi Brian,

        Thanks so much for your message, and for sharing a few of these tips on the forum. I actually never really thought about the things I could do while travelling to help improve my sleep, especially when I don’t have access to the bedding/pillows in the comfort of home. Asking for extra pillows is an easy but likely effective way to help me with this!

        Thanks for sharing and happy new year to you as well. I hope 2019 is great for you!

        Charlene.

    • #15927
      Rene Hakkenberg
      Participant

      Another tip for travel, I bought an inflatable wedge pillow, which has minimum volume in the suitcase when not inflated. Inflating it by mouth is not hard, even for our scarred lungs. It can be used the normal way or be put underneath the mattress, raising the head area by some 6 inches.

       

      • #15947

        Hi Rene,

        Thank you so much for sharing this information. Can I ask where you purchased it? Was it on Amazon? I see they have them for much cheaper than I thought actually, which is great. A good idea for those of us who like to travel!

        Cheers,
        Charlene.

    • #15928
      Raymond C. King
      Participant

      Hi Rene,

      Yes, moving to a warmer climate would be too late for me now if it could help and would be useless at my age. If you have been there for 42 years and it didn’t help, my 83-years (84 in Feb) wouldn’t help if I did it for 42 years more. Just thinking positive again! I’d probably have a hard time breathing well by then anyway.

      Just thinking about eating all that good fresh seafood makes me wish to try it though. I love any kind of seafood but I live in Idaho and the only seafood we get is frozen or at a Fast Food or Red Lobster. Even then it isn’t very good.

      I was kind-of a gourmet cook at home before I got the frozen stomach from a botched Hiatal Hernia/ Nissen Fundal Plication surgery in 2011. I now have a straight shot for the acid to flow from my lips to my stomach. My stomach can only hold about a cup of food per day and I get my liquid food at night through a J-Tube, an IV type feeding tube that goes into my small intestine. It takes about 12 hours to take all the liquid through the tube. I still like to cook when I see a good recipe so I put off eating anything earlier so I can try some of it when I am done. With this IPF, by the time I have prepared it I feel exhausted and a little nauseated so I can’t eat. Sometimes I eat a little the next day but it just doesn’t’ taste the same. I cooked a good Thanksgiving dinner a year ago and it was 2 days before I could even try it. Everyone said it was good though.

      My Pulmonologist told me he felt my about 57 years with acid reflux problems is what caused my IPF also. I have had almost 5 different surgeries trying to make the Fundal Plication work. The last one in 2011 at MAYO Clinic in Phoenix, Az. All to no avail. The only one I haven’t tried is a beaded elastic type band that goes around the esophagus and expands when you swallow and closes after the esophagus contractions stop. That is supposed to work, but the reviews I have read about it don’t sound very convincing. Swallowing through my esophagus is kind of spasmatic and I have trouble getting food to go down anyway. My gag reflexes seem overreactive which doesn’t help with my nausea problems as well.

      I didn’t mean to go on and on about my problems. Guess this is all a person has to talk about when we get older.

      Thanks for the invite to come and visit you to compare notes, eat fish, and snorkel. The first 2 sound good but snorkeling, I can’t get in the water with this J-Tube and a bandage covering it. I guess they make plastic patches that could cover it but I’m sure they cost a lot.

      I didn’t drink too much champagne last night. It sounded good though and I have hated to refrain for years. I just watched them drink them on TV. My doctors tell me not to drink alcohol as it causes more acid and conflicts with some of the meds I am taking. I do sneak a sip of someone’s drink occasionally. Don’t tell! I hope you celebrated and tried a little of it?

      Enjoy the rest of the New Year day.

      Ray King

    • #15929
      Raymond C. King
      Participant

      Thanks, Brian, for your comment on wedge pillows and traveling.

      Yes, it is always good to ask the motels/hotels for extra pillows if they don’t already have them in the rooms. Trying to sleep tilted to the left side is what my Gastroenterologist advised me too. The hard part is I must have a minimum rise of 30-degrees upper body elevation and it is hard to lie on your left side with that kind of tilt. The body doesn’t bend in that direction very well. For almost 7 years now, I have had to sleep on my back. Good advice though if you don’t sleep with much upper body elevated.

      Have a good Happy New Year!

      Ray King

    • #15980
      Patricia Jefferson
      Participant

      Hi everyone,

      I’m brand new, have read all your posts, and boy, can I relate!  I’ve had awful GERD for 35 years, and for many years just took lots of Tums.  Finally had to see a doctor and was on Nexium for years.  Got a Sleep Number bed, which is wonderful – I wish everyone could get one.  They gave us a good payment plan so we could afford it.  I’ve tried to eat supper early in the evening, and no evening snacking, but still have trouble with indigestion about 3 times a week, accompanied by lots of dry coughing and vomiting of supper.  I have dry coughing frequently and aspiration of acid.  I have an upper endoscopy scheduled next week and there’s talk of surgery for a lg. hiatal hernia.  I just had a HRCT and PFT  and had a followup with my pulmonologist 2 days after Christmas. She said the CT had changed very little and the PFTs were essentially the same as the ones done about 10 years ago. She asked me if I knew what had damaged my lungs so much back then and I told that lupus had attacked my lungs when I had pneumonia and I had almost died – I was given 3 IV chemo treatments of Cytoxan and then put on oral Cytoxan. Never once in all these years has pulmonary fibrosis been mentioned.  COPD is on all my medical records.  She said “There’s no evidence of COPD on your tests.  What you have is infiltrative pulmonary fibrosis.” We talked awhile and of course I’m looking up all kinds of info.  What I really don’t understand is how this could have started 10 or so years ago and I’ve been on oxygen for about that long (supposedly for COPD) and my breathing isn’ t really that different?  My arthritis is!  I just don’t understand.

      Thank you all for listening!

      Pat

      • #15993

        Hi Pat,

        Thanks so much for contributing to this topic thread – it sure is a popular one among our forum community, although I sure wish no one had to deal with GERD/acid reflux. Sorry to hear you’ve been dealing with it for 35 years!

        Do you find anything in particular contributes to the indigestion on the 3 days a week you experience it? That must be so uncomfortable for you. I am really glad to hear that your PFT and HRCT remain unchanged over the past several years, that is really good news in terms of the IPF management. Do they think the surgery will reduce the amount of GERD or indigestion you experience as well? Hopefully so!

        Interesting (although frustrating I am sure) that you’ve been on oxygen for the management of COPD for so long, but now being told you actually don’t have that, but instead a type of PF. There is a lot of literature linked to acid reflux/GERD and IPF. Has your doctor indicated that they think you’ve had the PF for 10 years? It seems a long time to have a stable disease, but that is good news if indeed it is your case. It is such a hard disease to navigate, isn’t it? Are you seen by a centre of excellence for the treatment/management of PF? They might be able to give you more answers and increase your understanding of the disease. 🙂

        Take care and feel free to write anytime. There are wonderful people on this forum who will help whenever they can.

        Cheers,
        Charlene.

    • #15990
      Rene Hakkenberg
      Participant

      Hi Ray, what a sad story it is, your IV , J tube, the operation misfortunes…I feel really bad for you. And I can just imagine, your being such a good cook, how sad it is that you cannot enjoy your own meals, not even your famous Idaho patatoes. Well the others enjoy your food, so that cooking is your good deed.

      Any ideas why your Fundoplication did not work? Just botched each time? One would think that at the Mayo Clinic they know what they are doing. I had just one Fundoplication which failed and doctors do not recommend to do it again in fear of further complications. My reflux was not cured and damage to stomach and sphincter nerves give me nausea and vomiting about once every 10 days.

      I visited Idaho to go skiing at Sun Valley where I once went up in the chair lift sitting next to Clint Eastwood and entering a hotel lobby I met with Buzz Aldrin, the no. 2 on the moon, who I had met earlier as I took him diving on a Windjammer wreck off our Bonaire coast. Before IPF I used to go skiing twice a year, your winter in the US or Europe and in your summer in Argentina or Chile.

      OK, one could say that living in a warm climate and eating lots of seafood did not prevent me from getting IPF. On the other hand my doctor tells me had I not lived here it could have been a lot worse. So, the invitation stands!

      Stay well and have a great weekend,

      rene

    • #16006
      Raymond C. King
      Participant

      Hi Pat,

      Sorry I didn’t comment on your Jan 3 post right away. When I got around to reading the forum items, it was late and I had a project I had to get done right away.

      I know what you have been going through with the acid reflux problems as you have probably read some of my posts from earlier above. It seems like I have been on the Nexium, its generics and all kinds of antacids forever. Each time I think I have found something that works, I find out it has just been a lull in it getting into the esophagus at night. After following several Doctors, Gastroenterologists, Dietitians and Surgeons suggestions on how to remedy it, it seemed to always come back. The latest thing I have been trying since September is chewing 2 EsophaCool tablets at night with a sip or two of water to help wash it down when I go to bed. When you chew them they immediately powderize so you need the water to swallow them. So far, (fingers crossed) I have only had a couple of nights when I thought I might be getting some acid in my esophagus but it didn’t burn so I’m not sure if it was actually acid or just some of the acid discharge from my stomach. I took a sip of water and was able to go right back to sleep. I can’t guarantee that it really works but it sure seems to work for me. I had ordered 1 60 tablet bottle to try them out and before they ran out I ordered 2 more bottles. I am on the last of the 2 last bottles so I just ordered 4 more bottles. If you should like to try them, I just looked and they are Super Sale Price: $8.10 with free shipping. They go up and down in price I noticed. I paid a little over $6 a bottle but got a quantity discount. They are normally $9.00 at LifeExtensions and $12 at Amazon. You might try them to see if they work for you. A Gastrologist that diagnosed my ring ulcer on my esophagus told me her husband had the same problem that I have and wrote down the item name for me.

      I looked them up with Google and ordered them from here: https://www.lifeextension.com/Vitamins-Supplements/item02033/EsophaCool

      They are a lot cheaper than some of the other antacid things I have tried. No guarantee they will work but they don’t cost a lot to try. They have some DGL(Licorice) taste but not too strong along with Calcium, Magnesium and a lot other items in them. If you don’t like the hint of a licorice taste, you may not like them. They do have them with a different flavor. Maalox and other Antacids have magnesium in them too. I have read on the Internet that black licorice is used as an antacid too. Anyway, just thought I’d give you the information. If you try them, post how they work for you.

      I see you have tried most of the recommendations the reduce reflux. I too don’t eat anything very late in the afternoon and especially near bedtime. I also found that Chocolate seems to cause some later problems no matter when I have eaten it. They also say to not eat many fatty foods or course foods and to chew all food really well. I envy your sleeping on a Sleep Number Bed. When I went to visit my daughter, she gave us her bed for a few days we were there. I was afraid that I would tend to slide down in it when I elevated the head and there was no foot raising ability but I guess I sank into the mattress pad far enough that I didn’t slide that I remember. I just slept well. My mattress is memory foam and I don’t sink into it very far.

      As per your cough causing the acid to come up and causes the vomiting, I was having those problems and with a lot of chest pains too. After I finally got the dry cough problem settled the chest pains went away and I vomited very often since. I think the fluid from my stomach getting into my esophagus from my deep coughing caused me to gag and vomit. The doctor told me the chest pains were caused from sore chest muscles from all the hard coughing. I am taking NORCO (Acetaminophen & Hydrocodone) during the daytime and that has completely stopped the dry coughing and no more chest pains and vomiting. I vomit only very seldom. I guess the codeine stopped the coughing and vomiting and the Acetaminophen part stopped the chest pains. Anyway, that has worked since last May or June.

      I hope, if your doctor decides on a Hiatal Hernia/Fundal Plication operation, it works out well for you. Sometimes they work and sometimes they don’t. I’ve talked to a lot of people that have had them and swear by them. Others just swear a lot. I have had 4 of them, one at MAYO CLINIC and no luck. I’m sure that the one that caused the later problems was that he wasn’t a very careful surgeon and damaged my stomach functions. That’s another long story I have told on the Forum at various places so I won’t drag this on here.

      Good luck with whatever you try and keep us posted. There are a lot of good people on this forum with advice and stories that help to let you know you are not alone. Charlene Marshall gives good advice and counsel. She seems to know a lot about almost everything that can go wrong.

      Ray King

      • #16024

        Hi Ray,

        I hope this note finds you doing well, and that you had a nice weekend 🙂

        I just wanted to express my gratitude for the time and energy I know it takes to add a thorough reply to the forum, and your notes to Rene and Pat were so well done and very informative. Kudos to you, as I know its not always easy but so many of us appreciate your contributions and kind words. We’re so thankful you’re part of our community.

        Cheers,
        Charlene.

    • #16012
      Raymond C. King
      Participant

      Hi Rene,

      About why the Fundoplication did not work. Stand by for a long story.

      The first one I had back in 1973 worked well. I was getting a lot of acid problems prior to it and taking a lot of antacids to try to take care of it prior to the operation. Spicy foods raised a big problem and I had to refrain from any of them. After the surgery, I could eat anything again. Then in the spring of 2011, I had a hiatal hernia (Fundoplication) surgery again. More reflux. The doctor that did it was supposed to be good at it and had just completed training on doing them by Laparoscopy surgery so it was going to be a simple one. Well, the day of my surgery was delayed during that day because the doctor had to do a couple of emergency surgeries. He ended up doing 5 that day. When he got to me, it was very late in the afternoon and rather than having me come back another day, he went ahead and did mine. He was in a hurry because he had plans to take off for Spring Break with his family. The Laparoscopy surgery didn’t go well so he ended up opening me up to do it. That also went slowly because I had scar tissue from the old 1973 operation for him to scrape away. During that process, he evidently cut the nerves to my stomach. He finished the operation at around 9 PM. Then after the first or second day, while I was in recovery, they discovered that while he was in there, he had puncher my esophagus and he had cut me open again to go in and repair the esophagus.

      I then had to go from the recovery section to a rehab unit where I stayed for about 30 days with tubes inserted thru my nose to my stomach and other, I had tubes in my belly to keep the esophagus dry so it would heal. That is also when they inserted the J-Tube to try to feed me. Then I went from the hospital rehab unit a private rehab facility where I spent another 30 days to try to build up the 35 lbs. I had lost. That is when they determined I had Gastroparesis (a frozen stomach). I also got a pulmonary embolism while there and went to the hospital for a couple of days to get that dissolved. After I got home for a couple of days, I had a heart attack. They assumed it was brought on due to the stress of all the surgery.

      At that time, I couldn’t even sip an ounce of water without vomiting and then my Gastroenterologist suggested I go to a large hospital in Utah or Seattle Washington or MAYO Clinic to see if they could help me. I elected MAYO Clinic in Phoenix AZ. They had me come down and ran tests on me for 12 days. They told me they would try to redo the Fundal Plication again to try to tighten the stomach wrap to help form the sphincter valve so I could try to eat something. I had to wait for about 4 months because of the heart attack I had. Four months later I went to MAYO again and they did the Laparoscopy operation. They spent almost 5 hours and said it took so long because of all the scar tissue they had to scrape away.

      14 days later, I went home again. I could drink a couple of ounces of water but no food without vomiting. That is when an atomic food stomach processing test showed my stomach was 80 percent frozen. So now, I have the J-Tube for feeding and taking medicines for the rest of my life. Sometimes I can eat about 1 cup of food a day. After they cut the stomach muscle nerves, your stomach just shrivels up and won’t stretch to handle a volume of food and it doesn’t process food very fast. Mine is 80% slower.

      Result: I still have acid reflux problems so sometimes it doesn’t pay to get the Hiatal Hernia operations and sometimes some people swear how it helped them. It’s all just a chance you must decide if you want to take.

      After talking to a lot of Law Firms about the botched surgery, they all told me that there is always a risk you take with any surgery so that’s just the way it goes. That is why the hospital and doctors have you sign a form before any surgery stating they are not responsible for failures.

      Yes, Sun Valley is a beautiful spot with good skiing. Sorry, you can’t go skiing anymore but I know what you mean. With this IPF, I couldn’t ski either, no stamina. The last time I ever skied was in Garmisch Germany in 1955.

      A lot of Movie Stars: Demi Moore, Ashton Kutcher, and Bruce Willis have purchased a lot of lands there and built some big houses. I see Clint Eastwood is looking into locating here in Idaho too. I read not long ago that Idaho was the fastest growing state in the Nation. It was nice when there weren’t so many people here though. They buy up the land and fence it off so you can’t get to the nice recreation spots anymore.

      My wife and I spent our 4-day Honeymoon in Sun Valley. I was born in Twin Falls, ID (about 135 miles South) and have spent a lot of my time in that area. There is a lot of good fishing around the area and things to do. I remember when I was just about 6 years old my aunt would take me to her home just about a mile from there for a couple of weeks. I remember well the silver-oar buckets that would travel on elevated cables up that Wood River Valley. It looked like a big snow lift but a lot of larger cars and traveled for miles. There are a lot of old pictures of them in the stores and in the Sun Valley Lodge.

      Thanks for the continued invite to come to the warm country. Sounds fun especially when we have the cold weather and the forecast is for 2-5 inches more this weekend. I noted Charlene Marshall had commented that she would like to go to that warm area also.

      I guess I’d better close as this is getting quite long and started to not give many people any more acid reflux problem helps and results.

      I love to hear from you and enjoy your posts.

      Ray King

    • #16015
      Patricia Jefferson
      Participant

      Hi Ray,

      Thank you for your long response  – yes I’m unfortunately aware of no late dinners and no chocolate!  Also no peanut butter fudge!  My GI doctor started me on Gaxalant and prescription-strength Zantac which seems to have helped.  The only problem is that I take the Zantac at bedtime and if my stomach decides to give the old heave ho, there go the meds.  I haven’t heard one person say good things about that fundoplication surgery so I think I’ll pass on that one.  (even though the surgeon was in my oldest son’s Boy Scout troop!). I have so many questions about this new diagnosis of PF – I can’t wait 6months till my next pulmonologist appt.  Thank you so much for sharing with me, Ray.      Pat

       

      • #16026

        Hi Pat,

        I am so glad you’ve found your way around the forums and are now able to navigate contributing to discussions – we’re glad to have you! I remember the feeling of being filled with questions pertaining to your new diagnosis, so please don’t ever hesitate to reach out. If we don’t know the answer on this site, we’re pretty good at helping you find it. We’re all in this together!

        I hope you had a nice weekend.
        Charlene.

    • #16040
      Rene Hakkenberg
      Participant

      Hi Ray,

      many thanks for your extensive, detailed response which will certainly be very helpful for me and many of us. Amazing what you have gone through…plus the horrible effects of an operation from a tired doctor that never should have taken place that day.

      Not sure what silver oared buckets are….

      There seem to be a lot of unsuccessful Fundoplications and it may be useful to ask in this forum if there are others that had positive results . That may help others decide whether or not to have the operation. Despite my failed Fundoplication doctors do not recommend to have another one, despite my continuing reflux.

      all the best

      rene

    • #16041
      Charles Whittington
      Participant

      I had many years of acid reflux / gerd and was on the maximum dose of Prilosec. In January, 2016 I was recommended to have surgery. I discovered a new treatment involving a magnetic reinforcing band around the esophageal sphincter. It is called LINX. Dr. Richards in U South Alabama performed the surgery along with a hiatal hernia repair. I was released the next day on a regular diet and have not had a PPI since. It is an alternate to the Nisan surgery. The only concern is that you cannot have a high strength MRI in the future which would damage the magnets.
      I have advanced IPF which I believe is due in part to GERD.

      • #16049

        Hi Charles,

        Nice to hear from you – thanks so much for contributing to this ever-popular topic thread. It’s always so nice when folks can share their experience and relate to one another, and I know the information you shared will be helpful for many others too. Interesting to hear about the LINX procedure! Was it relatively new in 2016 then and gaining ‘ground’ now in terms of the number of physicians who will perform it? I wonder if anyone else on the forum has heard of it? It seems to have gone really well and been quite effective for you, which is wonderful!

        Thanks again for sharing, and wishing you all the best in the upcoming year!
        Charlene.

    • #16047
      Raymond C. King
      Participant

      Hi Rene,

      I had a good experience with a Fundoplication in 1973 that lasted clear until 2011 before I had the bad one. I’m sure there are a lot of people that had good experiences too but those are the people that don’t complain or write about them. I have no idea what the statistics are both ways. If your doctor suggests you have one, it might be worth the try.

      I do see that Charles Whittington made a post about a new LINX procedure where a magnetic beaded band is wrapped around the esophageal sphincter area. When you swallow, the esophagus muscle pushes the food thru the band to the stomach and it contracts when the food passes to stop the acid to flow back to the esophagus. The doctor that performed my botched Nissen Fundoplication procedure advertises that he is the only doctor in the area that is certified to do that LINX surgery.

      I investigated it even after the bobo that I had from that him before. I asked my Gastroenterologist about it and he told me I wasn’t really a candidate for LINX because I have some problems swallowing anyway and mainly, that my sphincter muscle doesn’t work period. The LINX just aids the sphincter muscle action so it must be working a little. The good thing about the LINX is, they can do it Laparoscopically over the Nissen Fundoplication procedure which is done by open surgery. The LINX procedure though costs about one-and-one-half times what the Fundoplication costs but are faster.

      I am not an expert about what I am telling you so I’d better stop it. I am just relating what I remember I had read about it. It’s best you get some expert advice from your doctor. Good luck in whatever you decide.

      About the silver oar buckets near Sun Valley, I told you about. I just did a Google on them and spent over an hour trying to find a picture I could refer you to. I couldn’t believe I couldn’t find anything on them anywhere. I guess the next time I go to the Sun Valley area, I’ll take some pictures of their posted pictures and send them to you. It was in the early 1940s that I saw them myself visually and in the 80s that I saw the pictures in the stores.

      This is starting to get long again so I’ll close.

      Ray King

      • #16050

        Hi Ray!

        It’s been awhile – I hope you’re doing well!

        I know your reply was to Rene, but I just wanted to write and say thanks for more information on the LINX procedure. I’d asked Charles a bit more about it in my reply to him but hadn’t read your post yet, so it did inform me a little as well. Stinks that you weren’t a candidate for it, it does sound like it has been an effective resolution for Charles. I wonder if more doctors are certified to do the procedure now, as I can’t imagine that doctor that botched your procedure being the only one to do it if it is that effective. Hopefully others have been trained in it too by now 🙂

        I still owe you and Paula an email reply, I’ll hopefully get to that tonight as I am working my way through my emails slowly…

        Chat soon,
        Charlene.

    • #16048
      Raymond C. King
      Participant

      Hi Charles Whittington,

      Thanks for the info about the LINX procedure.

      I have read on and investigated it. It sounds good but I am not a candidate for it. I have posted why I couldn’t use it in the above post to Rene. If you are interested, you can see my explanation to her there.

      It is possible that you GERD caused the IPF. My acid reflux has been a problem for me for over 50 years and my Pulmonologist assumes that is what caused mine also.

      I am happy that the LINX surgery solved your GERD problems. Maybe you won’t have to have an MRI to check the progress of the IPF. They have other methods for that.

      Good luck with the IPF. Are you taking any Esbriet or Ofev to help prolong it?

      Ray King

    • #16081
      Patricia Jefferson
      Participant

      Hi Ray,

      Thank you so much for the info you have shared – I really appreciate it!  I had my upper endoscopy this morning and all the inflammation in my stomach and esophagus was almost cleared.  Probably due to the Dexilant and Zantac he prescribed a couple months back.  He recommended smaller meals and taking the Zantac right after supper so it could have a chance to work before bedtime.  He suspects that my hiatal hernia is the real problem.  I told him that I hadn’t been hearing very encouraging things about the surgery but he said a lot of progress has been made in recent years.  So I may talk to the surgeon about it at a later date.               Pat

      • #16091

        Thanks so much for the update Pat, I was wondering how you were doing and if you’d had your appointment yet. I’m glad there has been some clearing of the inflammation, do you notice any difference since knowing that information? Goodluck with talking to the surgeon about a surgical repair, let us know how that goes and what you decide if you can 🙂

        Take care,
        Charlene.

    • #16090
      Terri
      Participant

      Hi All. My am writing on befalf of my dad. diagnosed with IPF feb.  2016. put on ovef. just reduced dosage too 100 mg due to diahreah daily.  over the past 2 years been on the journey to treat gerd ( due to link w ipf). thinking acid reflux aspirating into lungs causing lung damage. he never tbought he had symptoms of gerd. because of ipf diagnosis, he was automatically put on gerd meds  by pulmonary doctor  and consult w GI doctor to treat.  did a ph probe showed no major  GERD.   did a swallow study/ tests showed mild swallow delay. did a manometry test. diagnosed with achalasia- no peristalsis in his esophagus. thus probably aspirating on food. because food /drink doesn’t empty into stomach. only gravity moves it food into stomach. the options of treatment ( no cure) ballon dilation, botox injections into esophagus. surgery ( heller myotomy) open muscle from esophagus to help empty food  into stomach. or POEM laparoscopic surgery similar to Heller.. but not as complete.  opted to do POEM less evasive. the non evasive options not work or last very long. and have to redo. thus introducing scar tissue. the discussions on this blog have mentioned doing surgery to do the opposite results of what my dad needs.  ( fundoplication. close the muscles from esophagus to stomach reduce Acid reflux. ). so after this POEM proceedure, my dad may end up with acid reflux by opening these stomach muscles.   DOES  anyone with IPF have swallow  issues or problems with esophagus ?  if so how did you treat?

      • #16106

        Hi Terri,

        Welcome again, and I am glad to hear you’ve joined in support of your Dad – he’s very lucky to have you! 🙂

        Really interesting that your Dad was automatically put on GERD medications when diagnosed with IPF. Does he feel as though they are helping at all? Sorry to hear about the unpleasant side effects he is experiencing from the OFEV. Has the reduced mg amount helped eliminate some of those for your Dad?

        I don’t have any experience with the surgery you mentioned, although there are lots of people on this site dealing with GERD/reflux issues, and a plethora of attempts to address it. Hopefully someone can respond and help you with this particular possibility for your Dad…

        Feel free to connect anytime, and thanks for writing us!
        Charlene.

         

    • #16053
      Rene Hakkenberg
      Participant

      Hi Ray,

      just a slight correction in your mail above. René is not a she but a he. If it were a she the name would have been spelled Renée. Hahaha.

      rené

    • #16096
      Raymond C. King
      Participant

      Hi Pat,

      So glad to hear that the stomach and esophagus inflammation has cleared up. I hope the Zantac right after supper will help with the reflux. I try to not eat anything very late in the afternoon and make sure I don’t recline for at least 4 hours after I have eaten anything. I think they recommend 2 hours but my stomach doesn’t pass food very fast so I add some extra time.

      His diagnosis of the reflux problem being from the Hiatal Hernia was probably right. It seems from what I have heard and read, the Hiatal Hernia problem is what causes most of the people with reflux problems that have stomach acid getting into the esophagus. That can cause all kinds of problems when it does. They say it can cause esophagus cancer, esophageal ulcers, and if it gets into the lungs, cause lung irreversible damage and PF. I’m sure that is what caused my IPF. A few months ago, I had an esophageal bleeding ulcer at the entrance to my stomach. I am not completely sure if it was just the defective hiatal hernia or a combination of both it and the Esbriet I was taking.

      The fears of having a hiatal hernia operation verses hearing my and some other people’s problem reports of it may not happen if you were to have one. The doctor is correct, they have come a long way in perfecting that surgery and I am sure a lot of people are getting good results from having one. The decision will boil down to how many problems you are having verses if you and the doctor feel it would be worth the chance. I guess that is the same as with any surgery though. As Charles Whittington posted above, he had a LINX magnetic bead bracelet type surgery to correct it and he said that it was very successful. That procedure has some good and bad things that can go wrong with it too so I guess it would be up to you what you might like to try. The LINX procedure can be done laparoscopically so they don’t have to cut you up so bad. It costs more though. It is good you are going to discuss it with your surgeon. He is your best source of information on what he thinks will help.

      Good luck in whatever you decide. Make sure you post to the forum how things are going. We are all interested.

      Ray King

    • #16097
      Raymond C. King
      Participant

      Rene Hakkenberg

      Sorry, Rene about my gender mistake in my post. I am not the best speller, especially with names so I didn’t realize the difference. I generally check the posted picture of the person I am replying to. If there is no picture of the person writing the post, they just post a blank silhouette picture of a person with no difference in male or female. I guess I got in a hurry trying to catch up on the posts I needed to reply to. My BAD! I truly apologize.

      Thank you for your caution. I’ll try to be more careful in the future.
      Ray King

    • #16098
      Rene Hakkenberg
      Participant

      No worries Ray, I just thought the gender mixup was funny, from there the hahaha. Apologies absolutely not required, but a good laugh yes! And you are right, I never posted a picture and wouldn’t know how to do that.

      We all have this lousy disease but we have good days and I hope you have a great weekend. I told you about fishing here, well, my wife’s family is coming to visit soon for a month so I needed a lot of fish. Left this morning at 5 am and came home about 2 pm with 1 wahoo,  4 tunas and 3 barracudas, together some 35 lbs, so our freezer is overflowing. Wouldn’t it be nice if you, master chef, could cook them for us and then you and your wife join us for dinner….wow…rene

    • #16107

      Hi Rene,

      Just chiming in here, although I know your reply was to Ray … Wow, the fish you caught sound amazing! I love fresh seafood/fish, what a treat to have this “in your back yard”. Do you ever smoke any of the fish you catch? Smoked salmon is my absolute favorite and I had tons of it on the Canadian west coast last year. I agree with you too Rene, wouldn’t it be so nice if we all lived within close proximity of one another and could join together over dinner or in person? Too bad this world is so large, but I am so glad we have this forum to use for the time being!

      I hope you had a nice weekend 🙂
      Charlene.

    • #16116
      Raymond C. King
      Participant

      Hi Rene,

      I took what you said about the gender names with tongue-in-cheek so no worry. It was kind of funny.

      I had never written to a Ren’e, Rene, Renee, Renae, Renny, Renne, or Rennie before. I guess the name spelling comes from what part of the world people are born and named in. Some are Dutch, French or Irish, or another origin and the name is pronounced the same in English. Some are unisex and others can be used for both sexes. Anyway, as I said, I’ll try not to make the mistake again and when I refer to someone, I’ll use their printed name and not a pronoun to refer to them. I didn’t realize that there was so much behind the spelling of a person name. I’m not trying to make anything out of my explanations but it educated me a bit when I looked the name spelling topic up. Enough about that.

      WOW! That was really a lot of fish. I have eaten tuna but I have never tasted a barracuda or wahoo (Ono) before. Maybe you could put a bite of them in an envelope and send it to me? Ha Ha. I had never even heard of a wahoo (Ono). When I looked up a picture of the Ono fish, they are beautifully streamlined looking. About the only fish we have in Idaho that could maybe surpass them in size are sturgeons. I have seen pictures of some of the sturgeons caught in Idaho being landed with a team of horses and one I saw was pulled in with a tractor.

      We do have some large ocean salmon that have come up the Columbia and Snake Rivers from the ocean to spawn in Idaho. I have never fished for them but my father fished for them a lot. I am not a trophy fisherman and I just go after the fish I can handle, like rainbow trout, bass, perch, bluegills, and Coho salmon. I like to catch them and fry them on the spot while we are camping. Although I did go marlin fishing one time in 1978 while I was in Mazatlán Mexico. I didn’t catch anything but it was fun. Terry Bradshaw and Joe Ferguson, football quarterbacks, stayed at the same hotel I did. I asked them at the swimming pool if they caught any marlins or sailfish and they said they hadn’t caught anything either.

      I sure wish there was some indication that the beautiful warm area you are in helped people with IPF and bad acid reflux so my insurance would cover it and I’d be on my way south. Maybe you could take me fishing? I think you could talk Charlene Marshall to come there too. I know she really would like the warm weather and fresh seafood.

      Better close now. Remember me when you are savoring a nice fish steak.

      Ray King

      • #16146

        Love this correspondence Ray and Rene! You could easily talk me into going somewhere that the ocean is right now, and warm weather – Canadian temperatures dropped to -23 degrees celsius last night. I’d much prefer to be where Rene is 🙂

        I saw a meme the other day on the internet that made me laugh, it was about Canadian winters and a cartoon picture of someone half frozen that said: “the air hurts my face. Why do I live somewhere where the air hurts my face?” … it totally resonated with me!

        I would even catch and cook my own fish if we went fishing Rene – I love anything to do with the sea! Hope you’re enjoying the warm sunshine, please send it our way.

        Charlene.

    • #16118
      Raymond C. King
      Participant

      Hi Teri,

      I see your dad has some of the problems that I have. My esophagus is very sluggish in pushing my food to my stomach too. In my case, it wouldn’t make any difference if it got to my stomach or not because I have Gastroparesis resulting from a botched fundoplication surgery. My stomach only works at a 20% efficiency now.

      There might be an alternative to your father having the esophagus not working like it should and whether to have a fundoplication. If he had a J-Tube or G-Tube installed, the food he would be getting would bypass the esophagus problem. The J-Tube feeding goes directly into the little intestines and the G-Tube would go directly to the stomach. He would get all the nourishment he needs through the tube and wouldn’t have to eat. Not eating would also help cut down on the extra stomach acid being produced and from the different foods that cause extra acid. Anything he does eat would still go through the esophagus and stomach but he wouldn’t have to eat as much via that direction.

      It wouldn’t cut out all the GERD and that would still have to be taken care of by the usual anti-acids, elevated upper body raised sleeping methods, and still if eating a little, staying away from the acid producing foods, etc.. Nothing I have run into seems to completely stop some GERD reactions but it would cut down on the problems he is having with sluggish esophagus problems and maybe help a little with the GERD caused from food to the stomach.

      Either putting in a J or G-Tube requires a little surgery but when it must be replaced, they can usually do it without another surgery. I have had a J-Tube for almost 8-years and have had it replaced 5 or 6 times. They also keep coming out with new inventions for a better tube and replacement methods. It might be worth a try? Something to talk to your doctor or surgeon about.

      You mentioned a few procedures I had never heard about. Very interesting.

      Keep us posted on what your father and you decide to do.

      Ray King

      • #16147

        Thanks for sharing Ray, as always, your post is very thorough and informative…. I know others will benefit from your knowledge and sharing your experiences 🙂

        I know I owe you an email, stay tuned, I’ll send it as soon as I can.
        Hope you’ve had a nice week!
        Charlene.

    • #16132
      Donald Otis
      Participant

      I had bad GERD earlier, prior to the pneumonia that we think has lead to IPF. Since the diagnosis, I have used Prilosec (omeprazole) daily. I also use Zofran (ondansetron) for the side effects to Esbriet.

      My pulmonologist and I have found a couple of studies that tie GERD to IPF, and therefore the potential problems from omeprazole are out-weighed by the benefits.

      • This reply was modified 1 year, 6 months ago by Donald Otis.
      • #16152

        Hi Donald,

        Thanks so much for sharing your experience with us, including the drugs that seem to be helping with GERD, and the management of Esbriet side effects. I’ve actually heard of others finding Prilosec quite helpful in the past, do you think it reduces the effects of GERD for you? Glad the Zofran helps with the nausea from Esbriet too!

        Thanks for sharing your experience with us, and glad you’re finding the benefits outweigh the risk. I can’t believe the number of people who are equally impacted by both GERD and IPF. I didn’t know about this until it became a really popular topic on our site. I appreciate your contribution and sharing a bit of your experience!

        Charlene.

    • #16183
      Dorothy Hixson
      Participant

      The Esophacool does contain deglycyrrhizinated licorice extract

    • #16184
      Bill Mattila
      Participant

      My acid reflux had a lot to do with my lung condition. Causing lots of inflamation.

      • #16207

        Hi Bill,

        Thanks for sharing a bit about your experience with us. Unfortunately through all the members on the forum, I am learning just how prevalent / problematic acid reflux can be in those of us who also have PF/IPF. Sorry it is causing such difficulty for you and inflammation. Have you found a way to tackle this?

        Charlene.

    • #16191
      Raymond C. King
      Participant

      Hi Dorothy Hixson,

      Yes, Esophacool does contain deglycyrrhizinated licorice extract “DGL”. In an I earlier poet I had stated that Esophacool had a licorice taste and I hadn’t seen anything in the ingredients that said it contained any licorice. I was very wrong. When I told my daughter about what I was using, she informed me what DGL was. I guess I am not very smart and shouldn’t publish a comment without doing a little research first.

      I looked up a few references for DGL uses on the internet and found one article stating:

      “Some doctors and alternative health advocates recommend DGL for acid reflux. People believe DGL promotes mucus activity. This extra mucus may act as a barrier to acid in the stomach and esophagus. This barrier can allow the damaged tissue to heal and prevent future occurrences of acid reflux.”

      I don’t know if Esophacool will help everyone but so far, for me, it has helped tremendously since I have been taking it starting late last summer. I only take it at bedtime as I hadn’t been having acid reflux problems in the day time very often.

      I have had acid reflux problems for over 50 years which I always took some antacids for. I have only had the serious night time reflux problems since 2011. It caused me to get an esophagus bleeding ulcer. I have been taking strong Rx antacid 2 times per day but still got nighttime reflux. Since I have added the Esophacool, I have only had a couple of light acid reflux problems at night. It really seems to work for me.

      I hope if you are having the acid reflux problems you can find something that will work for you also. Keep all of us posted with any progress you find.

      Ray King

    • #16208

      Hi Ray,

      Thanks, as always, for such a great and thorough response to our members! I’d never heard of DGL and the potential benefit of it towards acid reflux, but it makes sense in terms of the mucous production and protecting the tissues by acting as a barrier. Is Esophacool a topical rub/ointment or something you take internally or drink? You may have told me this before and I’ve just forgotten, my apologies. Lots on my mind so I am a bit behind on information being shared on the forums but am working on catching up. This is a really great post to remember when new members talk about difficulty with acid reflux. I so appreciate your thorough response 🙂

      I’m so glad it is working so well for you, I am sure that will bring comfort to others who are considering trying it.

      Take care,
      Charlene.

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