Changing the standard of thinking.

10 Basics of Gaining Weight With Cystic Fibrosis

Do you have any tips for me to help me gain weight?

Porking outThis question keeps popping up via my contact form, so I guess it’s time to put my best tips that are spread out in various articles into one place to make it easy. Keep in mind that these are general tips for CFers that are approved for me by my doctors and nutritionist, so please check with your team if there’s anything here contrary to what you’re doing or what you’ve been advised of in the past. Shoot, check with them no matter what, okay?

Having a healthy BMI is crucial to having a healthy lung function. Check out this study summary for a fresh look at how you can turn your life around by gaining weight.

I don’t have CFRD, but I do my very best to keep my sugars as low as I can while still getting enough carbs to help boost my caloric intake some. The overall rule to gaining weight is: bring in more calories than you burn – exactly the opposite rule of losing weight. It’s really more of a second full-time job if you already have one or a first full-time job if you’re in school or on disability – make it a priority.

  1. The first step to to try to find out over the course of a week how many calories it takes to add some weight, any weight, without losing any. You absolutely must be consistent with your liquid intake or you will significantly throw off your calculations with water weight, especially if you’re on a high sodium diet like many of us are. We are probably NOT talking about 2,000-3,000 Calories here. For me to gain weight, I need to pack away 4,000-6,000 Calories per day. You’ll want to use a phone app or spreadsheet to track your intake for accurate numbers.
  2. [Read more…]

Does Cystic Fibrosis Make You Bitter or Better?

Super-DuperI’ve heard the phrase a few times over the years, but got a refresher today about having a good attitude. When bad things happen, you always have the choice to be bitter or become better as a result. It’s always a good thing to periodically evaluate your life and ask yourself which you allow to happen.

I’ve make the distinction between the two basic types of CFers: the down and out who have given up on living life to its fullest and those to take the bull by the horns and drive it into the ground, even if they get tossed into the air and gored a few times in the process.

I happen to be the latter type, as are many of you.

CF has, without a doubt, made me hundred or thousands of times mentally, physically, and spiritually tougher than I would have been if I had gone my whole life without a sick day, restrictions/discrimination due to having CF. In every instance there was a choice to be made. In the vast majority of them, I chose to make myself better, tougher, smarter, and more mature.

People are watching you. If you’re a parent of a child with CF, they are watching you. You have to be strong and become better, too. If you don’t they will accept your view of what is happening to them as reality and it will most likely be an unchangeable reality to them – as perception becomes reality due to thousands of factors of mental and physical activity that affect one’s health.

[Read more…]

There and Back Again: Surgery Recap

Post-OpMaybe Number Ten is a lucky number, at least regarding sinus surgeries. Here’s a recap of both my sinus history and this latest one.

I had two or three in Ohio by the time I was 16 and then the next 5 or 6 in Tampa with one ENT by the time we got married when I was 27 with Number 9 being with a new ENT after my long-time ENT retired. That was in October. Fast-forward 2 months and my headaches were nearly describable.

A new CT scan showed my sinusitis was worse than before my surgery, but this test result came after an overnight O2 test and a full sleep study that put me on an AutoPAP for nighttime desaturation, a common cause of late morning headaches. The CT scan led to a second opinion with a doctor who operates out of the same hospital as my CF center, and he suggested a cleaning under general anesthesia with some reconstructive work on my septum as a therapeutic option because he wasn’t able to physically access many of my issues in the office due to my anatomy as-is. Surgery was scheduled for January 6th.

My calendar tells me that today is the 8th now. Surgery feels like months ago already because this was (by far, without exception or exaggeration) the absolute best surgical experience I’ve ever had… with very few hiccups.

[Read more…]

Starving Already, But Just Wait

Here it is, already 10:30am here. I got up at 8:45 after staying up until 1:30 so I could be sure to drink Boost as late as possible and also help me sleep. Both were accomplished quite nicely, but I’m already starving. I’m so hungry, I’m imagining the smell of blueberry muffins: a food I’m not even particularly fond of.

Our plan is to leave at noon and fill up the Kia with gas so we can make it to TGH and check in shortly after 1pm. With surgery scheduled for 3:30, I won’t be out until 5:30 or so and normally spend 2-3 hours in recovery (or PACU, as they call it). If I were a betting man, my money would be on my staying the night, considering that I bled enough to change my dressing every 3 minutes for hours in October. Even 12 hours later, Beautiful was still changing my dressing every 30 minutes at midnight.

10 Basics of Gaining Weight With Cystic Fibrosis

Do you have any tips for me to help me gain weight? This question keeps popping up via my contact form, so I guess it's time to put my best tips that are spread out in various articles into one place to make it easy. Keep in mind that these are … [Read more]

Does Cystic Fibrosis Make You Bitter or Better?

I've heard the phrase a few times over the years, but got a refresher today about having a good attitude. When bad things happen, you always have the choice to be bitter or become better as a result. It's always a good thing to periodically evaluate … [Read more]

There and Back Again: Surgery Recap

Maybe Number Ten is a lucky number, at least regarding sinus surgeries. Here's a recap of both my sinus history and this latest one. I had two or three in Ohio by the time I was 16 and then the next 5 or 6 in Tampa with one ENT by the time we got … [Read more]

Starving Already, But Just Wait

Here it is, already 10:30am here. I got up at 8:45 after staying up until 1:30 so I could be sure to drink Boost as late as possible and also help me sleep. Both were accomplished quite nicely, but I'm already starving. I'm so hungry, I'm imagining … [Read more]

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