Not the biggest loser

Standing on scalesBeing the biggest loser is not a good thing when it comes to Cystic fibrosis (CF). People with CF (PWCF) often have trouble keeping enough fat on.

This is because a) we don’t get as many calories out of our food due to compromised digestion and b) we use a heck of a lot of energy fighting infection 24/7, breathing, coughing and doing treatment in addition to living a normal life. PWCF need to consume at least 150% of the recommended calorie intake for people without CF. It can feel like a chore and sometimes you look at food and just wonder how you will possibly eat it all. Keeping the kilos on can be quite a preoccupation.

When I was little my Dad would make me a Scandishake for breakfast every day. Scandishake was (and possibly still is) a massively high calorie drink. Truly, it tasted so disgusting that I could only tolerate half the dose. As soon as my weight and height rose to an acceptable range I firmly declined further Scandishakes. In further efforts to keep my weight on Dad and Mum used to force feed me bananas as a kid. I had to eat the first half sitting at the table but was allowed to leave the table and finish it off at my leisure. Or, as I preferred to do, stick the unwanted bananas behind bookcases when no one was looking. When we moved house Dad and Mum found lots of fossilised bananas stashed away. To this day bananas remain my nemesis.

I also remember having fights with Dad in the supermarket. He wanted to buy me the double chocolate coated tim tams (double the calories!) but I only wanted the single coated. Not many parents and children have that particular fight.

Mum once told me that she saw a magazine article ranking breakfast cereals from healthiest to least healthy for kids. She skipped right to the bottom of the list and I ate Frosties for years. Still love them. Now I don’t seem to lose weight. I just don’t put any on, no matter what I eat. A nice balance for me at the moment.

Dave on the other hand is an eating machine. I still can’t quite believe how much food he eats. Our grocery bill is pretty massive. For breakfast, Dave eats left overs from the night before. For morning tea, Dave eats left overs from the night before. For lunch, Dave eats left overs from the night before. For afternoon tea, he might have two toasted sandwiches or left overs from two nights ago to mix things up a little. All in all, he basically eats five dinner sized main meals a day with snacks thrown in to boot. He goes through rice crackers, sesame snaps and mixed salted nuts like you wouldn’t believe. He regularly consumes 500ml of soy custard for dessert (with extra protein powder) and has a hot soy milk and a snack for supper. When he’s admitted to hospital he gets two full trays of food for each meal and high calorie drinks (like the dreaded Scandishake) every time a tea lady steps foot on Level 11. It really is at the ridiculous end of the spectrum.

Even with all this food consumption, keeping Dave’s weight up can be a struggle at times. Insulin and lots of protein in meals are the latest tricks that have helped him to pack on a couple of kilos of extra padding.

Nasogastric (NG) tube or percutaenous endoscopic gastroscopy (PEG) feeding is sometimes needed in PWCF. This is where a tube is passed through the nose down into the stomach (not such a pleasant thought or procedure) or through the abdominal wall and straight into the stomach through a surgical procedure. This way people can be fed with high calorie preparations in addition to their usual meals so they don’t have to actually eat the vast amount of food necessary to equal their daily caloric quota. The feeding can happen overnight while they are sleeping. I have known PWCF who resisted these measures for ages (who wouldn’t?) but when they finally agreed to the procedure their health U-turned. Instead of continuing their downward spiral to death their health remarkably and positively improved – their lives were prolonged immeasurably.

Hopefully for Dave and I these interventions are never needed or are far, far in the future. For now, I will continue to make my colleagues jealous with my cheese and chocolate at lunch. Yum yum.

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