Viewing 9 reply threads
  • Author
    Posts
    • #14388
      Jenny Livingston
      Keymaster

      I’ve seen the following scenario play out more than a few times:

      Someone posts a picture of themselves enjoying drinks with friends, and inevitably someone else comments that it’s not okay for people with CF to drink alcohol. Let’s unpack that a little bit, shall we?

      Sure, there are concerns about excessive alcohol consumption but that goes for anyone, not just those of us with CF! Alcohol can interact negatively with some medications and might make others less effective. Alcohol can affect sleep patterns, which can make for a poor night’s sleep. Also, since alcohol is a depressant, it can impair a person’s respiratory system. For some people with compromised liver function, alcohol consumption can be dangerous. (This is certainly not an extensive list of concerns, just the first ones that came to mind.)

      But is alcohol a hard no simply because of CF? I don’t think so.

      I believe it’s a good idea to talk to your care team about it, and you should definitely be of legal age, but I don’t think it’s a universal rule that people with CF cannot enjoy a drink every now and then.

      What do you think? Do you choose to drink or do you refrain from alcohol consumption? What has your experience been?

    • #16062
      Judy Moreland
      Participant

      Alcohol is dehydrating, the opposite of something a person with CF needs. Ever notice how thirsty you get after drinking more than one or two drinks?

      My understanding of the problems in CF is that problems are caused because chloride doesn’t form salt in the cells correctly. The salt (sodium chloride) holds water and lubricates the lungs, pancreas, and reproductive organs, etc.

      Most of us are familiar with thick, sticky (too dry) mucus in the lungs, which leads to lung infections. The dehydrating effects on the female reproductive system is not that well known, but in my case it caused or helped cause infertility. An infertility specialist I saw when trying to get pregnant told me that I wasn’t ovulating–when I clearly was–because my “mucus was too thick.” We were both right; I was ovulating, and my mucus was too thick. I was never able to conceive, but my husband also had a low sperm count, so it was probably a combination of both issues.

      I think CF related diabetes is caused because the pancreas is not hydrated enough.

      I do not believe alcohol and CF mix well. Caffeine is also dehydrating, and I stopped drinking alcohol and caffeine about 20 years ago. I probably could drink both in small amounts, but it was actually easier for me to give them both up.

      I didn’t learn this from my CF center but did research on CF and am a trained professional nurse.

      Judy Moreland

      • #16064
        Jenny Livingston
        Keymaster

        Judy, I applaud you for giving up caffeine — it’s probably my greatest vice. I did, however, mostly give up alcohol for reasons that you mentioned, and also because CFTR modulator drugs are known to be hard on the liver. I felt like mixing the two was asking for trouble. It’s not a strict policy for me, but I rarely have reason or the desire to drink anymore.

    • #16063
      Judy Moreland
      Participant

      I forgot to check “Notify me of follow-up replies via email” in the previous comment.

      Thank you.

      Judy Moreland

    • #16065
      Paul met Debbie
      Participant

      I don’t worry about moderate coffee intake. There might be good reasons to limit cafeïne intake, but the fear of dehydration is most likely not one of them. If any, the dehydrating effect of coffee is only very minor and medically not relevant. There are many substances like alcohol and salt, and many circumstances (heat, sweating, exercising, diarrhea) that are much more relevant to dehydration than cafeïne.
      Besides, dehydration is just the net loss of water in the body. In other words you loose more water by excretion (poo, pee and sweat) than you take in water (drink and eat). If you are in tune with your body, you will notice getting thirsty and you will drink water. If cafeïne were to cause extra excretion, it is easily covered with drinking water – which is 99,9 % of the cup of coffee. It is however a good habit to drink a little glas of water with or after your coffee. The extra water intake you get this way will probably improve your water balance.

      The fact that cf patients loose more salt by sweating, is not a valid reason to drink more or be worried about dehydration. On the contrary, the body normally gets rid of excess salt via the kidneys by making us thirsty and take in water. In cf, some of the excess salt is already being disposed of via the sweat glands, leaving less work for the kidney-route. Modern industrialised food contains so much excess salt that we don’t need to worry about too low salt levels except for instance in cases of severe diarrhea, in which situation we better take a complete balanced electrolyte addition rather than only salt.

      • #16067
        Jenny Livingston
        Keymaster

        Paul, I’m afraid my coffee intake is more than moderate. Eeshk. But I have started drinking a large glass of lemon water before my coffee in the mornings. I can’t say I’ve noticed anything different, but I’ve come to really enjoy it.

        Your comment reminded me of all the extra salt my mother used to add to our food and drinks when my sisters and I were young. In the summertime, I would participate in horse shows — oftentimes all day long in the blistering heat of summer. My mom, at the behest of my doctors, started adding salt to sports drinks. One afternoon, a fellow competitor saw us doing this and was horrified! I overheard her telling one of the other girls in our riding group about it later.

        As you mentioned, this may not be something we needed to do, but it’s what we knew at the time. And all these years later… I still sometimes add a little dash of salt to a summertime drink because I grew to love the taste so much!

      • #16071
        W. Hoh
        Participant

        Paul is wrong about’s old intake. People with CF do need to take extra salt in addition to what they get in a normal American diet It’s a well-established fact. but don’t trust me, some random guy on the Internet… Listen to your dietitian in your CF clinic.

        • #16072
          W. Hoh
          Participant

          Salt intake, not old intake.

          Forgive the typo, I must rely upon voice recognition due to a service-connected disability. Thank you.

    • #16068
      Paul met Debbie
      Participant

      Ha, that’s an amusing story, Jenny!

      It reminds me of a neighbor I once had. She was a dear old lady and lived in the apartment next to ours. So when I came home early in the afternoon from university she always saw me walking by the kitchen window, and more often than not she invited me in for a cup of coffee. She and her husband had no children and in a way they considered me the son they never had. We had many good moments together, talking and laughing while sipping from her great coffee.

      I remember enjoying this coffee very much indeed! She made the most wonderful coffee with a very rich taste. One day I happened to be in the kitchen when she was making the coffee and to my astonishment I noticed she added quite some salt to the coffee! So that was her secret brew! After that, I mostly declined the second cup, but even now I still remember how special the first one tasted. But I never got into that habit myself.

    • #16070
      Rusty
      Participant

      Hi All,
      I read somewhere that Alton Brown will add a bit of salt to coffee to reduce bitterness. I tried it and it did seem to make the cup a little “smoother”. I would only do that to bitter coffee which I don’t tend to buy. As for me, coffee never seemed to be a problem. Two cups a day. I believe the diuretic effect is more than offset by the amount of liquid in the coffee. As for alcohol, I have a bit of bourbon everyday because I love it. I also like red wine and sometimes have that in place of the bourbon. Can’t give up every vice; where is the fun in that?

    • #16074
      Tim Blowfield
      Participant

      Great comments! The wonderful thing about CF people is the thought they put into their life. keep it up. CF is a chameleon of a disability – so many issues – lung damage may be so common but so are so many other issues. Infertility due to thick mucous – but also the effect on intracellular electrolytes of the faulty Chloride transport. We may expect that to affect Adrenal and Parathyroid function (The latter affecting bone density and formation……… Heart function? Every cell in the body is affected.

    • #16082
      Paul met Debbie
      Participant

      @ W. Hoh

      Thanks for your answer. It made me look for these guidelines you mention, not only in your and my country but worldwide. However, doing so didn’t change my answer but it did uncover something very weird indeed. So, thank you for that.

      You mention advice of the dietician. If only we could trust what our local dieticians parrots. But it is not that simple. Guidelines differ enormously in different countries and continents, and there is almost no relevant research done to back up the guidelines that go around.

      It is highly questionable at least to prescribe extra salt intake to cf patients on a protocol basis, because the salt excretion differs enormously in individual patients, and due to circumstances like exercise, heat, fever, drinking and eating (cf patients mostly are advised to eat more, so this might well take care of any surplus salt loss by it self – this is one of the things that are totally not researched or even considered).

      As said, guidelines differ widely, going from only advising extra water-intake, to taking 1/8 of a teaspoon of salt per day to even taking up to 8 teaspoons of salt per day. It’s truly amazing. And all “backed up” by dieticians and physicians, mostly without any scientific research mentioned. I am still looking for good research on this, when I find some I will mention it in the forum (and also when I don’t).

      It is only well established that cf patients lose more salt in their sweat than normal. And that, because of this, they don’t get thirsty enough and might not drink enough to compensate for the water loss in the sweat they produced. This could lead to dehydration. How to deal with this on the other hand is not well established at all. It is very haphazard. It is amazing how little consensus there is worldwide and how little this has been researched well. Taking extra salt haphazardly without a good basis might be a solution worse than the problem. If we take too much salt, our kidneys could damage and we get high blood pressure (mostly unnoticed).

    • #16083
      Judy Moreland
      Participant

      There are different opinions on this subject of dehydration and alcohol and caffeine intake, especially caffeine intake. The different opinions above make me think I don’t have the complete knowledge to know what is right for every person with CF.

      I didn’t understand all of Paul’s opinion, but I think I will leave it at this: In my personal struggle with CF, I have found that caffeine makes my mouth very dry, and it makes me urinate more and be more thirsty (quite possibly alcohol, too, but it has been over 20 years since I’ve had alcohol and don’t remember for sure). I know for a fact that alcohol is very dehydrating from studying alcoholism.

      Therefore, in my personal CF journey, it made sense for me to give up alcohol and caffeine. I loved coffee and drank at least 2 cups a day, sometimes more, when I drank it. I did not receive guidance for this from my CF Clinic, but I think giving up alcohol and caffeine has helped me. Unfortunately, since I was diagnosed at 42, I didn’t know that I had CF when I was trying to get pregnant. If I had known, with the right, knowledgeable gynecologist, I may have succeeded.

    • #16512
      Tim Blowfield
      Participant

      Oh! CF! So complex. Great to hear your story Judy and sorry about you failing to get pregnant.
      We do tend to blame the thick mucous for everything wrong in CF but it does not answer a lot of questions. Why do CF persons have so many drugs that they don’t tolerate? Why so many co-morbidities? Are they CF caused?
      Heart disease was considered as not being caused by CF yet more and more are being found with such and not just coronary artery disease but cardiomyopathies too.
      Adrenal malfunction has long been recognised in persons with CF that too often are found to be hypokalaemic needing Potassium infusions. Is that the result of intracellular electrolyte inbalance?
      Osteoperosis is also found in CF’ers often put down to inadequate Calcium intake/absorbtion. But is that the reason? Or is it a result of Parathyroid Gland issues caused by high intracellular calcium in the Parathyroid cells? Probable but as yet we do not know?
      We need fantastic CF Physicians, not just with a very good knowledge of CF pulmonary disease but with very good knowledge of general medicine willing to investigate the unknown.

Viewing 9 reply threads
  • You must be logged in to reply to this topic.

©2021 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account