Feeding Cystic Fibrosis

The first time I went to the adult CF clinic with my husband (boyfriend then) the nutritionist told me “the best thing you can do is fill him up with fried foods, high fat foods, lots of butter, fast food…really the best diet for him is Big Macs every day” and so I did. After all, they were the experts.

The next time I went with him to the clinic I asked the nutritionist, “aren’t you worried about heart disease or diabetes or any of the negative effects of eating high fat diets?”

Her response, you ask?

“CFers don’t have those problems. They don’t live long enough to experience the negative effects of that diet. Really, we’re just trying to keep weight on them so they can stay healthy while they’re alive.”

That’s when I realized the research for CF diets is still in the stone ages. Before CFers were living into their 30s, 40s and 50s this diet made sense…sort of. Ask any CFer on this diet how their bowels treat them.

During our six years of marriage, I have acquired and adapted a number of recipes that are both healthier than straight fried fast food everyday and benefit the weight maintenance of my (previously 129lb) now 150lb 36-year-old DDF508, GERD, CFRD husband. I would also like to think I’ve learned a thing or two beyond nutrition and plan to post some stories about our lives together from time to time.

The recipes I post in the CF Recipes category along the right-hand side of my page are not officially endorsed by any medical professional or organization. These are just recipes I have found benefit my guy in maintaining his weight. Some are clearly more fatty than others, but as with all things, in moderation shouldn’t do half the damage the “feed them straight big macs” regimen would do. As for the other stories, well, those are intended to be cathartic, humorous and relateable for others out there living with or feeding someone with Cystic Fibrosis.

5 thoughts on “Feeding Cystic Fibrosis

  1. This is a great blog.

    I’ve had the same concerns about the high-fat diet long-term, although my boyfriend always says that if he lives long enough to get heart disease, he’ll call it a draw.

    I try to focus on using healthy fats like olive oil, nuts, avocado and oily fish, and to make sure that meals have reasonable amounts of vegetables and fibre as well as all the fat.

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  2. I adore this blog.

    My partner is 46 and has CF.

    I too was gobsmacked by the advice from the nutritionist.

    This is what I’ve discovered thus far.

    When I first me her she was being admitted to hospital 4 times a year.

    She’s not needed to stay in since early last year. This coincides with her lifestyle changes.

    The most important thing I found is to get glutathione in to her cells.
    This includes supplements and a diet rich in fruit and vegetables. Due to the amount of daily fruit and veg it is impossible for her to eat them as a meal
    therefore I juice them and blend them.

    In the juicer I will put in apples, a whole cucumber, a few carrots, berries, kale, spinach, pineapple, sugar snap peas, ginger, lemon and oranges.

    In the blender I mix this with an avocado, banana, fresh yogurt with live bacteria, acidophilus, etc. And heaps of ice.
    supplements are NAC, niacin (B3) liver care milk thistle, high dosage of vitamin C.

    These have thinned her mucus and helps her body get the much needed glutathione. NAC crosses the brain blood barrier which enables glutathione.

    To offset the damage her antibiotics have she take advance probotics. These have billions of healthy bacteria which do get into her gut.

    Since starting this plan her spirometry readings etc have vastly improved. She has not had the flu even though those around us have. She does not purse lip breath and she is now cycling for the first time in 30 years.

    This has given us a vastly improved life. In every area.

    I’m not a doctor. However, the kick start was watching a documentary called – fat sick and nearly dead
    It’s on Netflix and YouTube.

    Her nutritionist asked if she has her 5 a day.

    As a side issue. My partner also had skin cancer. She was due to be operated on. Yet withing weeks it had cleared up and her skin went from being a bit on the rough side to very, very smooth. She also looks a lot younger.

    Her spirometry reading was around 27 and went up to 53.

    Her sleeping is.normal and (this would.normally sound inappropriate) but she has daily bowel movements for the first time ever.

    I hope this is of some use

    Live long, be happy and enjoy life to the maximum.

    ,

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