I Am a Middle-Aged Drama Queen

arrowAnyone who walks away with seven stitches and a near perfect arrow-shaped scar should have a good story to tell, right? Attacked by my recliner doesn’t seem to qualify, though. But that’s what happened. Really, I wouldn’t make up something so lame.

I blame the prednisone, of course. It’s made my skin so thin and papery that staring at it too hard can cause a tear. That’s why a simple scratch that should have left a red mark at most resulted in a 3-inch gash topped by a chevron-shaped skin flap.  I didn’t even know I’d injured myself until I saw blood dripping on the carpet. One look at the wound and I knew I needed stitches.

Luckily, we have a wonderful urgent care just five minutes from the house. Proximity is key not just for convenience — it also means if my portables run low, my husband can dash home for a quick fill. The doc was fast with his patch job, though, so we managed the outing on what I had with me. Still, the whole incident was full of drama — drama that we are all growing quite tired of.

Bum lungs and bad-ass meds keep me teetering out here on the brink. A little stumble becomes a broken ankle and surgery. The sniffles morph into pneumonia. An extra half slice of pizza leads to an evening of difficult breathing followed by 20 minutes of roller coaster sats and projectile coughing at bedtime. Drama Queen is not my style and it’s a role I inhabit reluctantly. But maybe that’s the lesson here. Let the drama flow through me and over me without letting it define me.

Unfortunately, no matter how Zen I become about it all, everything that happens to me affects my family, too.  If I need to go to the ER/urgent care/doctor, someone has to drop everything and take me. If a tube becomes unplugged, someone has to untangle the snarl and reconnect it. If my tank runs dry, someone has to fill a new one for me. Caregiving is emotionally, mentally and physically draining work — especially for those who take care of patients like me, dancing on the edge.  I have the easy part: breathing, hoping, waiting. But my family? They’re the ones who deserve medals, parades and their own feast days.

 

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.

Tethered II

Today marks week #6 on the transplant list and my disease continues to progress. Everything slowly is getting more difficult, usually requiring more energy and breath than I can muster. As a result, I confine my bipedal forays almost exclusively to Pulmonary Rehab and the 6-minute walk I must endure at my bi-weekly clinic appointments.  Around the house, rather than hoofing from one room to the next, I rely on my trusty chariot — a zippy 3-wheeled scooter that miraculously squeezes into even the tightest alcoves and closets.

The scooter is truly a Godsend, affording me the kind of speed and agility I haven’t experienced for a very long time. It saves my breath for the really difficult maneuvers, like going to bed or getting a drink. But it also adds a whole new dimension of insanity to my ongoing issues with snarled cannula.  On my feet, it was no big deal to reverse direction and walk back around any obstacle my cannula encountered. Now, that same action often requires a deftly executed three-point turn, the occasional ding to cabinet or wall, a terrorized dog, and a bit of mild cursing.

Most annoying, however, is the constant battle between 50 feet of cannula and three spinning wheels. Toss in a persnickety “Y” connector that joins cannula to concentrators, and you have a disaster that plays out daily. Oxygen tubing is not cooperative. It does not lie flat or slide along in a nice orderly fashion out of its neat coil. It prefers to bunch and gather, especially around corners, ripping itself free of the Y connector on one end, or my face on the other.

But my cannula really shows its fickle ways while I am riding down halls, around furniture, and through rooms. It wraps itself around tires, knots up under the axle, or gets itself stuck in the tiny “anti-wheelie” wheels at the rear of the scooter. Often I will be jetting along down the straight-away (hall), only to have the cannula ripped from my face as it catches briefly under a wheel. I’ve tried coiling the cannula as I go, threading it through the arm rest to keep it free from spinning tires, and readjusting the tubing to keep it out of scooter range. But nothing is fail-proof.  I still hold out hope that some clever engineering student at MIT or Caltech will lay down their latest Robot Wars entry long enough to design a workable hose reel for oxygen tubing. They will be an instant Rock Star among gaspers everywhere!

Though cannula and scooter may not be the best-suited cohorts, together they provide a sense of freedom that I cling to everyday. Unlike Pulmonary Rehab where I can do 30 minutes on the treadmill (supported with 40 lpm of oxygen, constant monitoring, and a snail-like pace), taking three steps at home leaves me gasping. The scooter opens up the world (okay, the house) to me. With it, I’ve been able to enjoy a few sunny afternoons on the deck and get my own lunch — small but very important victories. If the call doesn’t come soon, I will likely finish out my waiting in the hospital. But for now, the scooter is helping to keep me firmly planted at home where I can ride to the end of my 50-ft. tether and view the landscape from a new perspective.

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.

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!

The List!

OrganI made it! I’m on the lung transplant list! Well, almost. I will officially go on the list next week after I’ve met with the surgeon and signed the paperwork — that’s when the real waiting begins. In the meantime, I’m busy trying to get everything taken care of so I will be ready when I get “the call.”  And I am hopeful that my wait will not be a long one.

After a full evaluation at Barnes earlier this week, I’ve been assigned a Lung Allocation Score (LAS) of 62. The score is based on a 100-point scale and most people on the list are clustered in the 30s and 40s. A score of 50 is the 90th percentile. My score places me about the 93rd percentile, and that means that next week when I am officially listed, I will be #1 on the Barnes list.

That’s incredibly exciting, however it’s tempered a bit by some pretty serious limiting factors on my side. I’m relatively short (5’4″), so my donor will need to be my size or smaller. And I have HLA antibodies, which I developed during my pregnancies. HLA antigens are part of the immune system and in my case, this specific antigen occurs in 78% of the population. So, 78% of all donors are not a match for me — instant rejection. Among the 22% of donors that are available, we still have to match for size, blood type, etc.  To deal with the size problem, there’s a strong chance I will get only one lung. A single lung transplant would allow the surgeon to use a larger lung than would be possible if he was trying to fit two lungs into my chest. If I do get a single lung transplant, they would leave the less-diseased lung (my left) in as a “place holder” to keep my chest cavity from collapsing.

All of this leads to the essential and yet unanswerable question: how long? Masina, my transplant coordinator gave me the best answer she could — I might get the call the day after I’m listed, or it could take several years to find a match. Of course, I don’t have several years, so I will continue to pray that my match comes through while I am still healthy enough to receive it. I’ve been thinking in the abstract about “the list” for two and half years.  Now that it’s a reality, I am feeling overwhelmed for the first time. A lot excited, somewhat scared, and a nagging sense of guilt that my second chance will come at the loss of another’s life. So many things to sort out. Luckily, the transplant program includes social workers and spiritual counselors to help me work through it all.

Throughout this whole journey, I’ve felt strongly that there is a plan for me.  The first part was to make me a better human being, a better mom, wife, daughter, sister, friend. I think I’ve grown immensely as my priorities have shifted, fallen away and emerged anew to reveal the simple truth about what is really important in life (love, relationships, the things that bring me joy).

The second part of that plan — getting me to this point — has progressed quickly. Until I saw my LAS score, I just didn’t realize (or didn’t accept) how sick I am. I’ve been dancing on the knife edge, but no matter what hurdle appeared before me, somehow I’ve maintained equilibrium. In fact, every hurdle has actually pushed me forward.  My broken ankle helped to bust through a weight plateau and I’ve dropped 23 pounds since September.  Even my evaluation at Barnes, dramatic as it was, turned out for the best.  The 4-day eval started off on Monday this week with blood tests, a chest xray and an EKG. All went well until the EKG.  The tech ran a strip, left the room, came back to run another strip, left the room, then came back to run a third strip. She kept asking how I felt — I was fine.  The tiny room suddenly filled with people and someone was shoving baby aspirin at me. The EKG said I was having a heart attack. I knew I wasn’t, but we went to the ER anyway. While everyone in the ER agreed I wasn’t having a heart attack, they admitted me for observation and to do a heart cath the following day. The cath went smoothly and my arteries are beautiful. Thank God for statins and a timely change in diet!

Since I was already there, it made sense to simply complete my work-up as an in patient. Over the course of two days, they finished all of the testing and delivered my transplant patient handbook to me before I left the hospital. The blessing here? Four days of outpatient testing, running from floor to floor, sitting in crowded waiting rooms and driving back and forth in frigid weather would have done me in. As it was, I got to breathe that lovely high pressure 100% pure hospital oxygen and be escorted from test to test with a nurse in tow (because of my high liter flow, a nurse was with me all times).

Blessings have surrounded me throughout my journey, and I know they will continue. I have faith that when the time is right, everything will happen just as it should. Until then, I will wait patiently and prayerfully (okay, we’ll see how long the patience lasts!).  As I get into the routine of being on “the list”, I will post about my experiences.

In the meantime, for those of you who hope to one day get on the list, here are a few things to think about:

  1. Work hard to get to your goal weight as quickly as you can. My weight is what held me back from being listed earlier.
  2. Get active. Start pulmonary rehab, or at the very least, start walking.  Fitness and strength will be essential to get you through the transplant and recovery.
  3. Stay positive. Your attitude is paramount. Celebrate every victory, no matter how small. Focus on what you can do rather than what you can no longer do.
  4. Surround yourself with a team as committed as you are. If your doctors don’t know anything about PF, find ones who do. Join support groups to talk with people who are in your situation and can answer your questions (check out the Resources page for links). Ask your family and friends to help.
  5. Have faith. You can control your own behavior, thoughts and attitude, but some things are simply beyond us. My faith has given me the patience to accept and deal with these unknowns.

This Boot Was Made for Walking

BOOTShe walks! Actually, it’s more like lurching. But the point is, I am up and ambulating under my own power.  In fact, yesterday during my first physical therapy session, I made two laps down the hall and around the living room — about 200 feet.

My joy at getting vertical is tempered only by the realization that breathing and moving seem to be mutually exclusive at the moment. Each lap required a couple of rest stops when my sats dropped to 76. I think a good part of my increased breathlessness is attributable to my sloth-like existence during the past nine weeks. My muscles have gotten lazy and, as a result, much less efficient in using the precious oxygen doled out by my cheapskate lungs. My hope is that as I get more accustomed to moving, my breathing will improve.  In the meantime, walking to the bathroom is a workout, which means more calories burned and that’s a win in the weight-loss column.

One other development that is already helping with my SOB is a medicine change recommended by the good doctors at Barnes.  A blood test showed that I have developed methemoglobinemia, a blood disorder that results when an abnormal amount of methemoglobin is produced. Hemoglobin is the molecule that transports oxygen in the blood, and methemoglobin is a form of hemoglobin that can’t release oxygen. Methemoglobin made up 17% of my hemoglobin — which meant about one-sixth of my blood couldn’t carry oxygen.  No wonder my sats rarely rose above 88!  I stopped taking the errant medicine (dapsone) and my resting sats have climbed nicely to a consistent 91.  I even see the occasional 94!  We’ve replaced dapsone with Mepron to prevent a recurrence of PCP (fungal pneumonia).  It’s a liquid, which is inconvenient but it’s way better than having oxygen-resistant blood.

I think my family may actually be more excited about my mobility than I am.  They no longer have to wheel me to bathroom.  In fact, anything within my room is now my responsibility — filling my portables, straightening up, putting away clothes. Soon I will be responsible for getting my own water, and will probably develop a new understanding for why my beverage requests so often elicited groans.  It’s okay, though. The more I do, the more I can do — and the longer I can do it.