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Eating With Cystic Fibrosis: It’s a Full-time Job

I realized this morning how much of my day is spent contemplating my next meal or two, snacks, and whether or not I think I will meet my daily caloric goal. Today, Beautiful suggested that I explain how much I need to eat just to maintain my weight, so here it goes.

Requirements

According to a nutritional calculator at Mayo Clinic’s website, with my lightly active lifestyle, I should only need 1,900 Calories per day to maintain my weight as a 31 yr-old, 5′ 4″ male weighing ~120lbs. That would be nice! I also calculated Beautiful’s daily requirement as being 1,750 Calories. You’ll see the problem with that in a second.

If I go through a normal day of eating (pre-Fatboy) to just get through life without paying attention to eating enough, I’ll probably encounter 2,000-2,500 Calories and lose 2-3lbs by the next morning. If I make an effort to be sure I get enough to eat to get in the neighborhood of 4,000 Calories, I’ll break even. It’s not unless I intake 5,000-6,000 Calories that I can have any expectation of seeing the scale budge upward.

Social frustration

Few things are as frustrating to someone trying as hard as possible to gain a pound at a time as hearing someone say “I wish I could have your problem” or “I’d trade you issues.” Really? You’d better be careful what you wish for. When they say that, people are only thinking about how nice it would be to eat whatever and whenever they want, but there are other implications, such as eating when you don’t want to, not eating something you want at the moment because it’s just empty calories, and the constant threat of wasting away to a 98lb weakling again.

Throw in the cost of food today, and we’re looking at a complex and expensive issue. Food just for me and extra food to allow me to eat a bigger portion probably accounts for 3/4 of our food budget. Just my Boost Plus (store brand) drinks alone are 1/5 to 1/4 of our our weekly grocery bill!

A full-time job

Eating is actually my third full-time job, after running my business and going to college full-time. There are days where I know I would have gotten more done if I didn’t have to stop to eat. I have to eat a huge breakfast, eat a huge lunch before my second class, eat a snack if I can, eat another snack when I get home, and still try to eat twice as much as Beautiful for dinner after having eaten all that food already, and be sure I have a high-calorie snack before bed (if not a second dinner). That takes planning and a lot of specific foods to fit the bill.

Eating and family

Over our 4 years of dating, our eating lifestyle didn’t do a thing for my low weight, but it did affect her in a way she didn’t like. Our first year of marriage was no different, except I did manage to put on a very quick 10lbs, but that was just back to my “normal” after a very bad weight year. We have to carefully plan how to eat separately, but together in order to leave her feeling satisfied with what she needs to maintain her weight and for me to bring in 3x more than average and nearly 4x more than her in a day.

We have gone to great lengths to tailor our diets over the last year, with fantastic results. Whenever possible, I add extra calories after dishing up or by finishing the cooking in separate skillets so I can add olive oil or whatnot. She’s really my “little lady” now that she’s happy and I’m huge. I outweigh her by a considerable amount now, and that makes both of us feel great.

Comments

  1. I like the part about eating being a full-time job. I remember that stage well when I could impress friends with my eating abilities. I think that's what most non-cfers don't understand about CF – it's like having a second career.

  2. Everyone who does not have CF should read this one! It really helps us get into your head a little bit. Thanks, Jesse.

  3. My exploits at buffets over the years are things of legend. 😉 Too bad my appetite had to drop without the metabolism dropping with it like most people when they hit 30. Thus, the Megase for my appetite.

    • Did your appetite drop? My claim to healthy fame is that I have an amazing knack for eating. But I am not 30 yet. What should I be preparing for? 

      • Expect an appetite drop at 30. My normal friends (I kept a lot of older company in my early 20s because of a lack of people my age that stayed in town after high school) warned me about 30, and it’s true for us, too. Add in the stress of working all the time and then up it to the stress of running a business and an appetite just doesn’t seem to be a present asset of mine… as much as I want to go to CiCi’s and clean them out again.

  4. Yup, no one can comprehend how sitting around watching TV or playing computer games for a Saturday can leave you 3lbs lighter, but that's what happens if I don't take a break from relaxing to eat. Pretty much negates the relaxing.

  5. Man, never knew it was like that!!! I love food, but I don't think that I could keep up with that. It must be difficult to eat when your not really hungry. I'm sure you will make your weight goal!!

  6. Hey, KC! I really appreciate you coming over to read some of my stuff. Yeah,
    that is a hard part. I don't have an appetite stimulant, per se, other than
    testosterone, but I've got a cool med that turns off the signal to my brain
    that says that I'm full. I can literally eat until I'm unable to bend over
    without stopping… like when we were 12, right? Growing boys!

  7. Dear Jesse,
    I hardly know you but I feel that you are a great person who is ambitious and has a very positive approach to life. I have just learned about cystic fibrosis from your website. Thank you for teaching us.
    CONGRATULATIONS ON YOUR GRADUATION!!!
    I am sending you and Beautiful all my sincere best of luck and positive thoughts (or call it prayers)!
    May all your wishes come true!

  8. Thanks, Aylin! That is very much appreciated. Thanks for stopping by
    and dropping a comment.

    Don't be a stranger.

  9. Susanmperkins says:

    I'm sort of new to your blog and still catching up but I wanted to comment on this post in particular because I already know that this is going to be what my daughter will have to deal with her entire life. As a mom to a CF toddler who has struggled with being overweight my entire life, I have to make a conscious effort to not make comments like “it must be nice to have this problem”, even if I'm just saying them to myself. Getting my daughter to eat enough to simply maintain her weight is already a full time job for me and I know she gets so tired of me begging her to eat more!
    I really enjoy reading blogs like this one and other by adults with CF because it really does give me so much hope and inspiration for my little girl. Thank you.

  10. Thanks for leaving a comment. It's got to be rough on your end, I'm sure.
    I'm managing to be a bit more gracious when people say it, but it's still
    one of those things that people say… it's just hard to let slide like
    watching someone smoke away a perfectly good pair of lungs.

    I'd say it's easier to make “snack time” in the evening (like I'm trying to
    do) at her age than it is to learn that at my age. Go for it mama! Keep up
    the good work.

  11. rhondab30 says:

    A lot of our friends have made that same comment, “I wish I could eat like that and look like you.” It's hard for me, now as his protective wife, not to jump in and lay the smack down. Really? You want to eat like this, then you get everything else that comes with it (and I truly wouldn't wish that on anyone), but you understand what I mean. That is the balance we are trying to find as a family. How to fix enough food for John to eat, yet make it just as nutritious for our needs.

  12. Yeah, I have a portion illustrative post coming up this week. I am at least 70% of the food budget for two people, if not more.

  13. Rebecca says:

    I just wanted to tell you how much I’m enjoying reading your blogs! 🙂  I am the mom of a 10 year old girl with CF who is currently getting ready to come home from a 20 day hospital stay on Tuesday.  I just learned she will need to eat 3,300-3,500 calories a day right now, at this point to keep gaining weight, and it is definitely a full-time job! 🙂  She is also on megace right now, to boost that appetite up. She gained 12 pounds this stay so far. The hard part will be keeping it on.

    • It sure is! Be careful about the long-term effects of Megace. Search
      “nipples” in my search field or the Megace tag in this post to read about
      why. 12 pounds at any age is impressive!

  14. Anonymous says:

    I just found your blog today along with “Run, Sickboy, Run” and it’s good to find blogs I can relate to. 
    I have a better weight now than I’ve had in the past 6 months or so; 5’6″ and 125. I was around 110. Eating is definitely a full time job, and having CF related diabetes makes it a lot more work. 
    Thanks for the tips, I will be using them!

    • Glad you’re finding it helpful. Yes, it’s a lot more work with CFRD, and because we did diet modification to avoid getting CFRD, I do struggle to get the same calories as before (grains and sugars).

      • HI, I just recently found this website, it is hilarious reading some of the comments. I especially liked the comment about how someone can sit around watching tv and lose 3lbs. I couldn’t help but laugh aloud because I completely understand this. I was diagnosed at birth with CF and I have always had a large appetite. But, at 29 my appetite has really declined and I am always trying to find more ways to get tons of calories, in smaller portions. I think it’s trickier these days with so many restaurants and companies pushing for low calorie, low-fat, or “lite” foods. I always have to carry extra snacks in my purse and car. 
        Thanks for creating a wonderful website! It’s really nice to be able to connect and relate with other CF patients. Knowing your not alone really helps!!  Thank you and the best of luck to you and Beautiful! 

        • Ahhh, the dreaded “30 drop” in appetite. It hit me when I turned 30, just like my friends who were older than me said would happen… as they got big guts within a year or two of that milestone.

          Thanks for the feedback – it’s a real encouragement. Stay tuned for a new site design that I hope will make things easier to read and much, much easier to navigate to find helpful posts. Keep your stick on the ice and keep me posted.