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What Does 100% Compliance Look Like?

My favorite shirt - WordCamp Orlando

Well, for me, it looks like this. Oh, you’re expecting a description of what I am doing, I suppose.

That’s a different story, and one that I’m familiar with what it’s supposed to be for me, but due to 1.4 million excuses was not a part of my life. This sums me up pretty well: I got a free book from a conference called Too Busy NOT to Pray. I’ve been too busy to read it for going on about six years.

That’s how my CF life has been regarding my treatments for as long as I’ve been independent. It’s been a mix of doing all of my aerosols for a while, some of them for longer, and none of them off and on for various periods. The thing with me is that I’m so resilient, I have to get a swift kick from getting sick, inspirational motivation, or a firm talking-to in order to prompt any lifestyle changes. I’ve always been that way. What can I say, my stubbornness is part of what’s kept me alive this long. I’m a fighter, but I haven’t been using the tools of the trade and chosen to go into the ring bare-handed.
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Normal Weight Affects Lung Function in Cystic Fibrosis

This is the information that sparked my near-obsession with gaining weight. I somehow knew it’s the first step in getting back to a more normal life — like I had in my late teens. Beautiful began reading the CF forums almost two years ago, and found everyone saying that their pulmonary function tests (PFTs) improved with weight gain. Here I was assuming that I had better lung function back in the day simply because I was younger, but remembering that I weighed 118 back then and never got close to that ever since had me wondering if a better life was around the corner just by gaining weight.
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My Secret Weapon for Medicated Weight Gain

Over a year ago, I complained about a severe lack of appetite. “There’s nothing out there for me,” I said, “everything is all about appetite suppression.” That day, I filled a prescription for Megase. Reading the literature, it’s commonly used for cancer patients who’ve lost their appetite while on chemotherapy and AIDS patients who have chronic loss of appetite.

Megase is also a generic and only costs me $15 for 900mL of milky solution with my insurance. It’s semi-nasty in taste, but nothing that doesn’t quickly wash down with a swig of something nice.

How does it work? I’m not sure, scientifically, but I could look it up. Here’s how it works for me. If I take it 30-90 minutes before a meal, I’m absolutely starving when it’s time to eat. When I take it right before eating (or before), I don’t seem to feel full. The chemical from the stomach to the brain just gets lost somewhere. I would keep on eating if it weren’t so darn uncomfortable to eat 3lbs of food in one sitting.

When to use it to its best potential:

  • before a holiday meal (e.g., Easter, Thanksgiving, & Christmas)
  • before ordering a big pizza
  • before entering a friendly eating contest with your much larger friends
  • any time you just don’t feel hungry

Zenpep, the New Enzyme on the Block

Since I’ve been battling gaining weight for so long, I mentioned my desire to fatten up every time I go to clinic. I’ve had some really rough bouts with intestinal blockages this year. I had two in just 3 months, and one put me in the hospital overnight after spending all night and all day in the ER because regular medical staff can’t wrap their heads around the fact that I had two feet of my small intestine removed at birth. I did some calculations and came up with figures that call that 25-40% of my small intestine. There is scar tissue and some bottleneck in there that binds from time to time.

After my last episode, I was messed up for weeks. I was in pain for over a week and my normal body rhythm was all out of whack. There was bloating, gas, discomfort, chronic bathroom breaks, etc. One evening with family over, I went to the bathroom 10 times after dinner. Something had to change! Eventually, things returned to normal, but I was still deadlocked at 108-111lbs.

I went to clinic on February 19th and mentioned to my coordinator that things were still “not right” and told her my 3 main complaints were still bothering me. She said that a new enzyme just got approved and she had a sample bottle available for me. It’s called Zenpep. If I liked its results, my aerosol supplier ships the enzymes, too.

I went home and tried it that afternoon. That evening, no excessive bloating or bathroom trips. The next day brought the same good news, plus some added bonus of gaining 1.2lbs. The next time I weighed myself, I’d gained 2.5lbs. Things were on the move in the direction I wanted. During the time between running out of the samples and my new shipment arriving today, my old enzymes were their usual mess, shall we say. Today, I’m all better again.

Enzymes can really make a difference in your life.

Here is my theory on why Zenpep is working so much better for me than Ultrase MT20 and Creon MT20 have been: the amounts of enzymes within each capsule is vastly different. For example:

Ultrase MT 20:

lipase 20,000 USP units
amylase 65,000 USP units
protease 65,000 USP units
lipase 20,000 USP units
amylase 109,000 USP units
protease 68,000 USP units

You’ll notice a nearly two-fold increase in the amount of amylase in Zenpep. Now, I haven’t done any research on why they use this formulation, but here is what my research about those enzymes came up with:

amylase – Amylase is an enzyme which helps digest glycogen and starch. It is produced mainly in the pancreas and salivary glands.

lipase – Lipase; an enzyme secreted in the digestive tract that catalyzes the breakdown of fats into individual fatty acids that can be absorbed into the bloodstream.

protease – Enzymes acting on peptide bonds. EC 3.4.-

Given the nature of much of the nutrition we eat trying to gain massive amounts of calories (complex carbohydrates), it stands to reason in my head, dangerously educated by 2 semesters of chemistry and a growing understanding of my body chemistry with the advent of diabetes risk, that my diet requires higher concentrations of amylase to process those complex carbs.

I would highly recommend asking your doctor or clinic coordinator about Zenpep. They even offer up to a $50 rebate on your co-pays through December, so long as you have private insurance, not gov’t insurance. I’ll be getting these for free!