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    • #17272

      There is a plethora of literature available online that talks about the harmful effects of alcohol, including wine. However, if you look hard enough, there are also studies out there that counter this literature and say that any type of alcohol in moderation is fine. I suppose that is the key to everything, always in moderation…

      I have always enjoyed a glass of wine, particularly red at dinner time but never consume it on a regular or daily basis. Oftentimes, I’ll go weeks without having a glass but now I am getting a lot more interested in various wine types, along with the way it is made and aged. This makes going to wineries a lot of fun, not only for the purpose of learning more about wine but this is a really enjoyable social activity as well.

      Since my diagnosis of idiopathic pulmonary fibrosis (IPF) in early 2016, I’ve been intentionally mindful of how much wine I drink. Again, I never over-consumed in any way,  but now feel a little more guilty about having an occasional glass of wine knowing that overall, alcohol likely isn’t the best for anyone. Typically I don’t drink anything else during the winter months and will enjoy a cold beer or two on the beach at my cottage in the summer. Both of these are within moderation, and not consumed regularly but I still tend to feel a little guilty about drinking them at all. Clearly the guilt isn’t enough to stop me from having a glass of wine, as I just poured myself a nice red, but I thought I’d ask others on this forum:

      What did your doctors/lung specialists say about the consumption of alcohol following your diagnosis?

      Did they mention it at all as problematic, or have you asked them since? 

       

      Thanks in advance for sharing your thoughts.
      Charlene.

    • #17309
      Anonymous
      Inactive

      Hi Charlene, @charlene-marshall
      From a general point of view, it is now recognized by doctors and WHO that moderate consumption of wine is rather good for health. This is probably true for good health people.
      Is it the case for us ? I never discussed about it with the medical team. One more topic to add to my list for my next visit (mid of march) 😉
      What I’m sure is that a Glass of Wine is a great pleasure, absolutely in line with my “patient’s” rules of Life : Enjoy Life as long as you Can…
      Here in France we have a proverb saying : ” Le vin n’est jamais si bon que quand on le boit avec un ami.” something like : “Wine is never so good as when you drink it with a friend.” and this is the most important to remember !
      Take Care
      Jean-Michel

      • #29100
        Tammy
        Participant

        Charlene, does the consumption ever make you feel like your heart races?

        • #29101
          Carlo De Pellegrin
          Participant

          Charlene and anonymous, I used to be a one or two glass of red Italian wine almost every day. Since the IPF in September 2020 and the Esbriet I have reduced that to one 6 ounce glass 4 0r 5 times a week either red or white depending on the food. It is a little pleasure in life…..:):):)

        • #29142

          It definitely is Carlo – and one I don’t want to give up if I don’t have to! 😉 All in moderation right? I’m glad you’re still enjoying a glass a couple of times a week. I’ll have to check out some Italian reds! Thanks for writing.
          Char.

        • #29141

          Hi Tammy,

          Thanks for writing – no, I (thankfully) can share that I don’t have the experience of my heart racing after drinking wine. I wonder if anyone else does?

    • #17314

      Hi Jean-Michel,

      Thanks so much for getting back to me, I was really curious about this topic and what others thought or have been told. As I mentioned in my DM to you, I was quite happy to enjoy a small glass of read wine last night to “unwind” after a busy day …

      I thought I’d heard that moderator consumption of wine, particularly red, can be good for overall health. I suspect the issue for us with IPF/PF and consuming alcohol, might simply be its reaction with our medications but I am certainly no doctor. I will also add this to my list of discussion questions for next time I go visit the pulmonologist.

       

      I really like that proverb you share and believe in it completely. Friends and wine can lift our spirits, thats for sure, as its happened many times throughout my young adult years so far. Thanks for sharing! 🙂
      Charlene.

    • #17324
      Malcolm Mann
      Participant

      Hi Charlene

      I have read everything I can locate on OFEV & alcohol consumption, and have not found any recommendations either for or against. My personel research over only the last 4 weeks is inconclusive, I have had several beers, and red & white wine with out any obvious side effects.

      My grandfather was a noted Sydney surgeon (and vigneron) and supplied wine daily to all his patients.

      cheers

      mal

      • #17352

        Hi Mal,

        Thanks so much for getting in touch with me about this topic – it is of course one of interest, as my desire for wine-tasting and exploring different wineries grows! I don’t want to over-indulge of course, but am curious about what others have been told or do in terms of alcohol consumption since their diagnosis. I appreciate your sharing, and letting me know that the results of your research are inconclusive. I like that answer 😉

        Cheers,
        Charlene.

      • #27653
        Libby Fisher
        Participant

        I am going to go with Jean-Michel’s philosophy!!   I never drank much at all until my 50’s and haven’t had hard liquor since college.. no going to martini bars for me!   But my husband and I LOVE wine and derive much pleasure from sampling different types of Italian and Portuguese wines (mainly because those countries are our frequent travel destinations) , drinking a glass  before and during dinner each night.  Even though we are both retired, it is a wonderful way to say “okay, chores for the day are done, and it’s time to relax”.   I think wine’s benefits to our moods and to our overall feelings of well-being are more important than any should’s or should not’s.  Red wine is an anti-inflammatory… I don’t know if my achy muscles and joints know that for sure, but I do feel better and it’s better for me than taking an Ibuprofen! One thing I do know is that it adds a few pounds around the waist because alcohol is mostly carbs.  Most yummy, pleasurable things in life have a trade-off.  I’m sticking with the wine and the pounds… I’m a 7-time grandmother, so a little wine weight is okay with me :-))

        • #27663

          I would do almost anything to join you @travelingnana for wine tasting in those regions/areas of the world you mentioned. I’m so jealous 🙂
          Char.

    • #17337
      Kay Kagy
      Participant

      Hi Charlene,
      I talked to my pulmonologist about wine as well as that is my favorite (and probably only) drink and since I was on Ofev wanted to know. I have been given the green light to drink a glass or so whenever I want! Yea!!!

      • #17353

        That is wonderful news Kay, thank you so much for finding out this answer and sharing it with us! I like your pulmonologists answer so I’ll go with that 🙂

        Are you a red or white wine drinker? What kind of wines do you enjoy most? I still have a lot to learn but I am really enjoying all the learning that comes with wine tasting.

        Cheers,
        Charlene.

    • #17339
      Chuck Pefley
      Participant

      Hi Charlene,

      I received my IPF diagnosis July 2016 and then in January 2018 a rare & nasty lymphoma diagnosis. The first 6 months of 2018 were spent in and out of the hospital enduring chemo treatments. Not fun. But, I achieved remission in June 2018 but was cautioned that “remission would likely be counted in months, not years”.

      My outlook on life has morphed somewhat over the past couple years and become more focused on “quality” versus “quantity” of life. (Please don’t misunderstand this to mean I have any sort of death wish. I don’t.)

      However, there are two quotes I encountered 40+ years ago that still resonate with my thinking at this point in my life

      Eat Dessert First … Life Is Uncertain!

      and …
      To Enjoy Life, Take Big Bites, for Moderation Is For Monks!

      Life is to be enjoyed and in my opinion wine should be enjoyed as well IF it brings you joy.
      Your mileage may vary….
      Best Regards,
      Chuck

      • This reply was modified 2 years, 9 months ago by Chuck Pefley.
      • This reply was modified 2 years, 9 months ago by Chuck Pefley.
      • This reply was modified 2 years, 9 months ago by Chuck Pefley.
      • This reply was modified 2 years, 9 months ago by Charlene Marshall. Reason: formatting
      • #17355

        Hi Chuck,

        Thanks so much for getting in touch regarding this topic, and sharing a bit more about your story with us. Gosh, you’re very strong to have endured what-sounds-like such a difficult 6 months doing chemo and being hospitalized. I hope your remission status lasts much longer than they suspect, and it is indeed in years…

        Really love the quotes you shared! I collect quotes, and since my diagnosis, many of them are about enjoying life and not taking things for granted which I see as fitting for both of your quotes! I will add them to my book, and focus on the quality of our life, not quantity… such a good reminder!

        Thanks for sharing, and wishing you well Chuck.
        Warm regards,
        Charlene.

    • #17407
      john styles
      Participant

      I have to confess, I have a glass of wine a few times a week with my wife and I really enjoy our wine time.  The only time it bothered me is when my coughing got real bad and wine and salsa would set me off with a coughing episode, the laser has so far helped my cough to where I enjoy my wine. I have been told not to drink for 20 years but everything in moderation. My favorite quote “life s to short for cheep wine” Next time I have a glass I will toast everyone to have good health.

    • #17474

      Hi John,

      Thanks so much for sharing your thoughts on this topic. I think that is the key to everything in life, isn’t it: all in moderation! I too have a glass of wine occasionally, my favourite is red, and thoroughly enjoy this. Last night I opted not to be online, and read in the bathtub with a glass of wine for almost two hours. It was so relaxing, which is what I needed. I’m glad the laser has improved the cough for you, so you can indulge in this little luxury once in awhile again. Great idea to toast to everyone’s health! Ah, wouldn’t it be great if we could all enjoy a glass of wine (or our favourite beverage) together some day?

      Another favourite quote of mine pertaining to wine is: “life is what happens between coffee and wine”. 

      Enjoy your day!
      Charlene.

    • #27580
      Beverly Williams
      Participant

      My husband has recently moved to the point of preparing for a double lung transplant.  The doctors said no alcohol for the rest of his life because of the strong medication he will be on.  But up until now, it was no problem.

    • #27607

      Hi @bevwilliams62

      Thanks so much for sharing and I hope the process of preparing for transplant isn’t too gruelling for you and your husband. It is a long one! I haven’t heard of a doctor saying no more alcohol for the rest of your life, even post-transplant with all the medications. This might be a good question to ask other patients and/or for a second opinion. Like all things, it would be important to consume in moderation I would imagine but I haven’t heard of alcohol being an absolute no. I am not a medical expert or physician of course, but just relaying my experience.

      Has anyone else post-transplant been told this information?
      Char.

    • #27654
      Carlo De Pellegrin
      Participant

      Wow! This discussion has been going on for two years!

      I am a wine drinker, almost always red Tuscan Italian and one glass almost every dinner and occasionally a second or part of a second with fruit and cheese after dinner. When I spoke with Dr Shapera ( when I entered the IPL clinic at TGH in September, 2020 ) he had no objection to this.

      Occasionally with a seafood or fish dinner I will drink a glass of white.

      Because I take Esbriet with my meals, I always wash down the tablet with lots of water.

    • #27662

      Thanks so much for sharing your experience with us Carlo, I know it will help others to hear what your Doctor said about consuming wine with PF and/or on the anti-fibrotic medications. I think the discussion remains open is because patients are getting varied responses from their physicians. One person reported their Pulmonologist said absolutely zero alcohol. It helps hearing others’ experiences 🙂

      Thanks for sharing yours, I’m glad your Doctor had no objections to this… I enjoy the occasional glass of wine as well.
      Take care,
      Charlene.

    • #27669
      Les Viegas
      Participant

      Hi Charlene,

      The reason most pulmonologists advise IPF ( particularly post-transplant) patients against drinking alcohol is because many of the drugs that these patients take put a tremendous stress on the liver and drinking alcohol can exacerbate the problem. Drugs such as Imuran, Cellcept and corticosteroids are very toxic to the liver and if the liver enzymes (ALT, AST, Bilirubin, etc) increase beyond acceptable ranges, those drugs may have to be discontinued or dosages decreased to the point where they become ineffective.

      Therefore, if any IPF patient is interested in drinking a glass of wine ( not hard alcohol) occasionally, it should not be a problem as long as the liver enzymes are tested routinely and before it gets to a point of no return. As my lung transplant pulmonologist told me several years ago: “you are not going to live forever, so enjoy life, drink wine occasionally, but DO NOT overdo it!” and I have followed her advice religiously for the past 7 years. SO far there has been no impact to my liver enzymes or kidneys.

      Hope this information helps.

      Les

    • #27674
      john styles
      Participant

      My favorite time was with my wife splitting a bottle of wine, now I have a glass of water.  I would only say ” not so fast on drinking” I have some liver scaring. weather from fat or Hep C that was cured 5 years ago. When I had my liver biopsy they confirmed scaring and fat. When I had a lung thoracotomy ( lung biopsy where the widen your ribs and take samples from the lung, I had a connective disease with the lining of the lungs on the exterior that the doctors did not know what was causing it, this can not be seen with the cat scan.  3 weeks ago I got sick with what I thought was the flu and my pulmonologist prescribed a week of penicillin and I was not feeling good so I stopped drinking and stopped eating high fat deserts and cut back on tea and coffee. My lung saturation went from 86 to 89 sitting to 93 to 95 sitting and sometimes 96. Still lower when I move around.  I would say not so fast on drinking, I thought I was safe with normal low liver enzymes. Now I am afraid to have a glass of wine,  I think all the doctors can do for us is treat the symptom’s of our lung disease. I would think auto immune.

    • #27679
      Jerry Genesio
      Participant

      Charlene: I often have a glass of red wine with dinner. Also, every weekend since the pandemic confined us to quarters just about one year ago,  my wife and I play Scrabble to entertain ourselves and usually have a vodka tonic or highball, but never more than one. I was diagnosed with IPF in January 2020, but I have never been on a prescribed drug specifically for IPF. I was offered Esbriet but declined due to possible side effects and possible incompatibility issues. I’m on nine prescribed drugs for several other conditions, but the wine, vodka, and whiskey have never been an issue (Hallelujah! Hallelujah!)

      • #27708

        So great to hear Jerry, thanks for sharing! I’ve never had an issue with an occasional glass of wine here and there, either. I suspected alcohol in excess would likely cause inflammation, leading to other issues but I am similar to you and try to keep the amount I drink at once minimal and reserved to only weekends. Thanks for writing,
        Char.

    • #27686
      Les Viegas
      Participant

      People with IPF can all share their individual personal experiences with drinking wine which may not all be the same. However, extrapolating from those individual samples of “ones” is fraught with risk. There are two ways to get a definitive answer: either based on a proper statistically valid cause and effect analysis, or relying on the advice of experts who have treated thousands of IPF in general or lung transplant patients in particular especially if the primary concern is the efficacy of medications that affect the liver or kidneys and given the well known fact that alcohol does have a variable effect on the liver.

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