A Weighty Issue

scaleI talk a lot about my weight loss for two main reasons: 1) I still can’t believe I did it, and, 2) weight loss was the one huge hurdle that stood between me and the transplant waiting list.  In fact, it’s a hurdle that many potential transplant candidates face. As a result, I am asked all the time how I managed to lose so much weight while being sedentary and taking high dose prednisone.

After thinking long and hard about my weight loss (70 lbs. total, 50 in the past year), I’ve identified a few “secrets” that I am happy to pass along to you here.  But let me preface it all by saying that, at least for me, weight loss is 90% mental. Like everything else in my life, if my head is in the game, I can accomplish pretty much anything I set my mind to. If it’s not, then it doesn’t matter how much money I spend on weight loss programs (Nutrisystem, LA Weight Loss, Weight Watchers, etc.) or gym memberships. The poundage is going nowhere.

Okay, that said, impending death did a lot to finally get my head straight. Food has always been a very emotional thing for me — I eat when I’m angry, hurt, bored, scared, overwhelmed. You get the idea. I could have easily let the emotional turmoil of this disease continue to suffocate me in layer upon layer of fat. But a very special friend gave me a life-changing gift. She had a two-for-one Groupon to a weight loss hypnosis class and, out of the blue, invited me to come along.

During the 3-hour class, we talked about what to eat and when, did some relaxation and suggestion work, and took part in three hypnosis exercises. The most powerful one for me involved turning my insulating layer into a fat suit with zippers from head to toe. We envisioned our perfect selves, the way we wanted to be, and literally unzipped our fat suits to reveal our true selves underneath. Then we did something that impacted me profoundly. After imagining ourselves peeling off the fat suit, he had each of us turn around and tell our former captor what we thought of it and why it no longer commanded us. Then we visualized destroying the suit — forever and always. It sounds a little goofy, but for someone as emotionally tied to food as I am, it was stunningly powerful.

With my head in the right place, it came down to following a few hard and fast rules about weight loss. Unfortunately, there are no magic bullets here, but I hope you will find these tools as helpful as I did:

  • Consume fewer calories than you burn. There’s no way around it. Fat is stored fuel and the only way to force your body to burn its reserves is to take in less than it needs everyday. I used a BMR (metabolism calculator) to figure out how many calories I needed each day to maintain my current weight — then I selected a daily calorie limit that would allow me to lose 1 to 2 pounds a week. This is built-in with a lot of weight loss programs (like Weight Watchers), but it was interesting to actually see the daily calories my body really needed.
  • Plan your meals and snacks.  I assigned each meal and my two daily snacks a calorie limit, and then planned my menus accordingly. Some people find meal-replacement shakes a great help here, especially for breakfast and lunch. I, however, like to chew, so I prefer actual meals. I’m also a “grab and go” kinda eater — when I want something, I want it now! So I prepare my snacks ahead and have them ready to go in individual ziplock bags.  portion
  • Learn portion control. It’s no secret that in the land of “Supersize” we have no earthly idea  what real portions are anymore. I found this visual guide to portion sizes to be very helpful. This is another great guide that you can print out and carry with you. Watch portion sizes on labels; and yes, I do weigh and measure.
  • Speaking of labels…read them! Would you rather spend your 100-calorie snack on four thin crackers or a stick of string cheese and an apple? Labels offer more than just serving size and calorie info;  be sure to watch sodium, carbs and protein as well. And if you eat out, take time to check the nutrition information on the restaurant website. You will be amazed — that salad I used to feel so good about ordering turned out to be a 2,000-calorie bomb with more than 1,500 mg of sodium. Yikes!
  • Record everything!  There are a number of great free weight loss apps available for iPhone and Android. I use Lose It!, but there’s also My Fitness Pal and SparkPeople among others. Weight Watchers also has apps for a fee. Simply type in what you ate, and the app automatically calculates calories and other nutrient values. You can also track exercise, set goals, chart your results, etc. Even if you choose to use an old school pen and paper food diary, record everything! It makes you aware of what you’re eating, and keeps you honest with yourself.
  • Make small changes. If you expect to jump directly from morning krullers and frou-frou coffee to kale shakes, think again. You’ve developed your current eating routine over a long period and deconstructing those habits will take some time. Set one goal each week. If you don’t eat breakfast, commit to having breakfast everyday — something healthy and flavorful like scrambled Egg Beaters with an ounce of low fat cheese, or oatmeal with chopped nuts and fruit. Pick something doable each week. As you slowly adjust your eating, each new change will be easier to make.
  • Choose consciously. When the munchies are threatening and I find myself staring too hard at a bag of chips, I ask myself a couple of key questions:  Will this get me to my goal? Since my goal is lungs and the path there is weight loss, the answer is invariably “no.” The second question is: What can I do instead? Sometimes I walk away and immerse myself in a game of Candy Crush. And sometimes I find a healthier alternative that fulfills my craving of the moment (Now you understand why I have snacks pre-packed and ready to grab). The important part is that I stop and think about what goes into my mouth instead of mindlessly shoving in whatever I can get my hands on.

I know, you’ve heard this all before. That’s because, when you get down to it, this is what works. I didn’t “go on a diet” — I am actively changing the way I think about food. Finally, I am focusing on nourishing my body and not my wounded psyche. Bye bye fat suit.

But there is one weight loss secret I discovered that applies only to us puffers — breathing. Yup, our gimpy lungs are good for one thing and that is burning bunches of calories.  My pulmonologist told me the average person with healthy lungs expends about 2% of their daily energy on breathing, while puffers expend 20%. I wouldn’t be surprised if I spend a bit more than that trying to get these busted bellows to blow. The point is, while my 30 minutes at 1 mph on the treadmill barely registers as “activity” for most people, my body works hard everyday.  I burn calories, lots of them. And as long as I burn more than I consume, I can continue to lose weight. And so can you.  Yes… YOU!


Coffee Cup Scramble

Start your day with protein to jump-start your metabolism and keep you feeling full all morning long. This is one of my favs, quick and easy:

  1. Spray a coffee cup with cooking spray
  2. Add 1/2 cup egg substitute, 1 tablespoon milk, a grind of black pepper,  and stir
  3. Add some chopped fresh veggies if you like (e.g. spinach, broccoli, tomatoes)
  4. Microwave 1 minute, remove and stir
  5. Add 1 oz. reduced-fat cheese
  6. Microwave 30 seconds more, stir and enjoy!

Hot Italian Giardiniera

A spicy blend of tangy pickled veggies. Makes a great snack that crushes cravings by tingling those taste buds!

  • 1 green bell pepper, cut into 1-inch wide slices
  • 1 red bell pepper, cut into 1-ince wide slices
  • 2-3 fresh jalapenos peppers, sliced (remove seeds for less heat)
  • 2 celery stalks cut into 2-inch pieces
  • 2 medium carrots, peeled and cut into 2-inch pieces
  • 2 cups fresh cauliflower florets
  • 1/4 cup salt
  • water to cover
  • 2 cloves garlic, finely chopped
  • 1 Tbl dried oregano
  • 1 tsp red pepper flakes (more or less to taste)
  • 1/2 tsp black pepper
  • 1 cup white vinegar
  • 1/2 cup olive oil
  1. Place peppers, jalapenos, celery, carrots and cauliflower in non-reactive bowl. Stir in salt and fill with cold water to cover. Place plastic wrap over bowl and put in refrigerator overnight
  2. The next day, drain the salty water and rinse vegetables well. In a bowl, mix together garlic, oregano, red pepper flakes and black pepper. Pour in vinegar and olive oil and mix well. Combine with vegetable mixture, cover and refrigerate at least 2 days before using

Roasted Garbanzo Beans

I love this crunchy, high-protein snack. And best of all, you can add just about any kind of spice you can dream of to change the flavor.

  • 2 cans garbanzo beans (chickpeas), drained and rinsed
  • 2 Tbl olive oil (or olive oil cooking spray)
  • Salt
  • Garlic powder
  • Chili powder
  1. Preheat oven to 400 degrees Farenheit
  2. Dry chickpeas thoroughly on paper toweling, then place on a foil-like baking sheet
  3. Drizzle on olive oil (or coat with olive oil spray) and mix with hands to ensure beans are well-covered
  4. Sprinkle with salt, garlic powder and chili powder (or spice/flavoring of your choice)
  5. Roast for 30 – 40 minutes, stirring every 10 minutes, until the chickpeas are brown and crunchy


Snacks are a great way to add interesting flavors and textures to your daily eating plan. I try to include some protein in every snack to punch up the nutrition and satisfy hunger.


The Waiting Waltz

Dance2Two weeks in and I think I’m starting to get the hang of Life on the List. Thankfully, I no longer experience that little squirt of adrenalin every time my cell phone rings. Several calls from family and friends on my birthday last week were enough to break me of that heart-pumping annoyance. Even the calls that show up “BJH” (Barnes) on my caller ID don’t get me going — I know it’s probably someone from the transplant center with a question about my next appointment.

But my nonchalance over a few chirps and vibes belies a much more delicate dance taking place.  I had my first bi-weekly appointment with the transplant team a few days ago and emerged with a different picture of my situation. While my numbers haven’t changed that much — my FEV1 (measure of lung capacity) dropped a point and my blood work is the same — I’ve been struggling with my oxygen sats at home. We know that as long as we can push enough O2 into my lungs, my body will do its Energizer Bunny imitation (albeit a slo-mo verstion!)  The problem is my home O2 set up. Concentrators don’t deliver 100% oxygen, especially when they are running full-out all the time. They get close — mid 90s maybe. But my lungs are stingy.

When I need “bonus O’s” to supplement the two concentrators, I add 15 lpm on a non-rebreather mask from one of my portable liquid O2 tanks.  LOX, however, can get cantankerous, especially at high liter-flow. The tanks freeze up and flow can be inconsistent. Plus it’s difficult to know exactly how much O2 is left in a tank because LOX uses a fish scale gauge rather than a regulator.  Combine that with freezing and I find myself sucking on empties far too often.

The result is that at home it’s hard to force adequate Os into my busted lungs.  I’m fine while sitting still. In fact, I can nail sats in the mid- to high-90s while lounging about. But any movement… who would have thought going to the bathroom — something as simple as dropping trou and sitting down — would zap my sats down into the 60s. I’ve started using my scooter to get around the house and that’s actually helped a lot. It’s much easier to deal with the bathroom if I don’t have to walk 50 feet to get there. And I’m talking to Lincare, my oxygen supplier, about adding gas E-cylinders to my home O2 set-up. Gas cylinders give a more constant flow and they don’t freeze up.  And if I can get a 25-liter regulator, I’ll be in O heaven.

In the meantime, the transplant team told me I may end up spending my wait time in the hospital, where 50-psi oxygen, OptiFlow and ECMO machines will make it easier to stay oxygenated. For now, they are leaving that decision up to me. As I long as I feel like I’m getting what I need at home, I can stay put. And that’s exactly where I plan to stay, as long as I possibly can.

What the Heck is Going On?

Once I get The Call, my family will be updating everyone about my progress through CaringBridge.  The easiest way to keep in touch is to sign-up for email alerts from my CaringBridge page.

Until the Call comes, I’ll continue to post about “Life on the List” right here at Reality Gasps. So keep checking in!