PLM Interview

PLM_LogoRecently I was interviewed by the patient-support website PatientsLikeMe.com about “Life on the List”.  You can check out the full interview here.

I love PLM because it provides a single, comprehensive location where I can track everything from my meds to treatments, hospitalizations, and even how I’m feeling today. The charts feature offers a running history that I can review as needed with my medical team.  Plus, the forums allow me to connect with other patients to ask questions, share ideas and encouragement, and offer feedback on a wide variety of pf-related issues.

A key component of PLM is data sharing between researchers and members. Researchers frequently send out requests to members to take part in questionnaires, interviews or surveys.  And, I can give them access to my charted info for further research and analysis.

If you haven’t visited PatientsLikeMe.com, it’s well work a click.  They have communities for a wide variety of diseases, illnesses and conditions — even “rarities” like pulmonary fibrosis.

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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!

RECIPE IDEAS

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

LOW CALORIE SNACK LINKS

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.

Travels with My Reservoir … Or Gasping Across State Lines

Image For more than two decades, my family has made an annual pilgrimage to Sanibel, Florids. It’s our own slice of island paradise for one week a year — sun, sand, shelling and the luscious smell of sea air.  In the past, we also flew to Sanibel to maximize our short time there. But, since my diagnosis with PF, our travels have grown increasingly complex.

We were still able to fly for our first visit post biopsy. I rented a portable oxygen concentrator (POC) that worked for both the flight down and my activity while on vacation. At the time, I didn’t require oxygen while at rest, so the relatively low flow rate of a POC was just fine.

Six months later, we made a second visit to Sanibel. This time I was on oxygen 24/7, but my requirements were still fairly low — 3 LPM (continuous) at rest, 6 LPM (continuous) with activity.  Since portables offer only pulse settings at 6 LPM (and only a couple of models go that high), I knew a POC would not work for the entire trip.  We had to come up with a different alternative, and it was immediately clear that we had to drive.

While my husband and kids psyched themselves up for a 21-hour drive, I worked on piecing together my vacation Os plan. Usually, your home provider works with a provider at your destination to coordinate services.  My home supplier, however, is a local company with no ties to national suppliers. They said they were unable to arrange any support — I’d have to carry everything with me.  So, I rented a POC that we plugged into the car and provided me with a continuous 3 LPM for the drive.  We also brought my full-size 10L oxygen concentrator plus a home fill unit and 4 bottles of varying sizes.  I filled the bottles before we left, and used those for meal and potty stops along the way.  Once we arrived, the full-size concentrator met my needs at the condo, and kept my bottles full for jaunts around the island. All in all, it worked beautifully.

This year however, my oxygen needs were much greater — 6 LPM at rest and 8-15 LPM with activity. The same plan wouldn’t work. I still use my 10L concentrator at home, but I’ve graduated to liquid O2 for my portable needs because I get much more time out of a liquid portable (about 3 hours). Liquid isn’t perfect, though.  It boils off over time, so a portable bottle that was full the night before will be only half-full in the morning. So, filling a bunch of liquid portables for the trip down wouldn’t work.  Taking my full-size 41L liquid reservoir wasn’t an option either — it stands about 4 feet tall and weighs in close to 200 pounds when filled. There was no way we were going to heft that breathy beast into the minivan, and then drag it up a flight of steps to the condo in Sanibel.

Not my van, but this is what it looked like.

Liquid reservoir, concentrator, E tanks for reserve

Still, liquid was the only way to go to meet my breathing needs for the ride down. I borrowed a  21 L reservoir from my home supplier. It’s about the size and shape — and looks amazingly like — R2D2, and holds enough to last me almost 48 hours (1 liter of liquid O2 converts to 814 liters of gas).  Now, I just had to find someone near Sanibel to refill the reservoir during our week’s stay.

After a few calls to oxygen suppliers in the area, I began to understand why my home supplier had given up the year before. No one wanted to supply oxygen to someone who wasn’t their patient, especially someone from out of state. Many said they didn’t offer liquid O2. Finally I tracked down one supplier that grudgingly agreed to refill my reservoir, if and only if I gave them 24 hours notice, arrived at their location between 8 and 8:30 in the morning (the only time their driver was available), and agreed to pay cash.  A girl’s gotta breath, so I said yes.

When I called to make my final confirmation two days before the trip, the person who answered said they had no idea what I was talking about. Panic started to dance around the edges of my brain. After a bit of begging, she agreed to the previous plan.  But their office would be closed both Monday and Friday, and she couldn’t guarantee that the driver would even be there that week. With some more begging, I got the name of their O2 supplier.  While commercial suppliers can’t service patients directly, maybe they could suggest another retail supplier. I got two names and an unsolicited promise of further help if those didn’t work out. Finally, a glimmer of that famous southern hospitality! The first company I called was Rotech, and Todd said he could fix me up no problem. They even drove out to island to pick-up and deliver my refilled reservoir, and let me borrow one of their reservoirs for our stay. (Rotech didn’t show up on my initial internet searches for local suppliers — work on your SEO guys!)  The trip was a success, and breathed easy the entire time.

Traveling is getting more complicated and requires a lot more planning, but it is still possible. With a little tenacity (and a bit of human kindness), I know I’ll be able to continue traveling as long as I have the strength to go.  I look at my oxygen as I do eye glasses, a pacemaker or a wheelchair — it’s a tool that helps me live my life to the fullest.  It’s my choice, not my circumstance, that dictates whether I use the tools available.  And I choose to enjoy what I have with whatever support makes that possible.

TRAVEL TIPS:  Start early to make plans for traveling with oxygen — at least 4 – 6 weeks out:

  • Airlines do not allow oxygen in liquid or gas form. You can, however, use a portable oxygen concentrator — contact your airline to get specifications and necessary paperwork.
  • If you use a national oxygen supplier, they should be able to coordinate your oxygen needs at your destination, and run the costs through your insurance. Keep a copy of your oxygen prescription with you at all times.
  • Make sure to plan for more than your estimated travel needs (airlines require 150%) so you will be covered if you get stranded or waylaid.
  • Call to confirm before you leave.
  • Plan early, then enjoy yourself!

So Long, Farewell, Auf Wiedersehen, Adieu

goodbyeAt the stroke of midnight on New Year’s Eve, as the world greeted 2013, I closed the book on a huge chapter in my life.  As of January 1, I officially joined the ranks of the disabled.  The transition was more symbolic than anything, since I have actually been on medical leave since June.  Even so, I found myself swallowing hard at the finality of it.

The decision to leave the work force was not easy for me.  I’ve always worked. Though I was a stay-at-home mom when my kids were young, I still clocked 30 – 40 hours a week (sometimes more) as a freelancer. The thought of not working was anathema to me. In fact, until just a few weeks ago, I was convinced I would return to my job once I’d fully recovered from my bouts of pneumonia last spring. But each time I drew close to reaching the “magic number” (10 mg prednisone), I had a flare.  After a few long discussions with my doctor and a sobering look at how my disease has affected my daily life, I realized that returning to work was impossible. The constant threat of infection is a danger I can’t afford. And, how can I expect my co-workers to keep picking up the pieces for me when a sudden flare lays me out for weeks at a time?

When I entered the hospital in early December with my third case of pneumonia in just nine months, I knew I’d made the only decision I could.  Thankfully, I had purchased Long Term Disability insurance through my employer.  If you have the opportunity to buy LTD, do it NOW.  Someone gave me this advice at the beginning of my career and I am so thankful I listened.  This is our family income for now.  Every penny spent over the years was worth it.

I also immediately applied for SSDI (Social Security Disability Insurance).  My main purpose for wanting SSDI is the Medicare option.  After two years of SSDI benefits, you are automatically eligible for Medicare. Unfortunately, you have to be on Medicare an additional two years before it will pay for a transplant. That’s four years total before Medicare will cover a lung transplant. So, it was important to me to apply and get accepted as quickly as possible.

While researching the application process, though, I read that some 70% of SSDI applications are turned down the first time. Thankfully, there is something called the Compassionate Allowances List.  The CAL is a list of 165 medical conditions that are considered so severe, they are sure to qualify for disability benefits.  Applicants who have CAL conditions are fast-tracked and benefits are decided upon within a matter of days rather than months (or even years). IPF is on the list, and I received my approval three weeks after I’d submitted my application online. Finally… IPF is good for something!

Now that my benefits are in place (and the Medicare clock has started its slow count-down), I am faced with what to do with myself.  I’ve been gobbling up books by the dozen. My husband and I have started hunting down healthier recipes to help my ongoing weight-loss effort.  And I am even eyeing my knitting basket with its snarl of remnant yarn, trying to come up with something fun and creative.  But in the end, this is all just idleness.  What can I do that will make a difference for someone? What can I explore that will teach me something new?  I’m still figuring that out and I’m wide open to suggestions.

In the meantime, here are a few helpful links if you are looking into applying for SSDI:

Social Security Disability Page   The application is two parts: the benefit application itself and the Adult Disability Report. The report is where you will list your doctors, medications, tests, hospital stays, etc. Download the checklist first and gather up all of your info before you start. It will make it much easier (and faster) to complete the report online.  Remember to use the “Remarks” box at the end of the report to paint a picture of what your life is like because of your condition.

SSDI and COBRA Extension   When you are approved for SSDI benefits, you may be able to extend your COBRA coverage an additional 11 months (for a total of 29 months). This article explains it all.

Why You Want SSDI   This is another “lawyer” site, but it does give a great summary of the benefits of receiving SSDI.

 

Good News!

Aside

A new friend I just met through Twitter,  Mary Beth, pointed me to a great website ipfnet.org.  The site lists 26 medical “Centers of Excellence” that are tops in the treatment of IPF.  Thankfully, one of those centers is the very hospital where I just had my biopsy.  And… the doctor listed is part of the practice I’m already going to.

I’d say there was definitely a bit of Divine Guidance in play when I chose my team!  The site also lists ongoing clinical trials so it’s worth a look and probably a bookmark.