Pink, Shiny and Perfect!

post-tx

Look Ma, no hose!

Seven weeks ago today on April 15, I had a double lung transplant at Barnes-Jewish Hospital in St. Louis. And what an amazing, confusing, awesome, scary, thrilling, crazy, frustrating, inspirational seven weeks it has been.

I will dedicate a series of posts to my transplant experience. And yes, I will be giving you all of the gory (and not so gory) details.  On this, my first post following my transplant, let’s dive in at the beginning — the Call and the Surgery.

A little background first:

I’d been in the hospital for about a week, trying to stabilize after an exacerbation of my IPF. I was on the Optiflow, a special machine that heats and humidifies oxygen, at a flow equivalent to 20 liters. Moving required the addition of another 15 liters via E tank.  The Friday before transplant, my doctor had basically given me 3 to 6 months. In short, I was fading fast.

At the same time, we were discussing plasmapheresis, a procedure that runs the blood through a machine to remove and temporarily suppress the production of antibodies. My heavy antibody load, which ruled out 78% of the general population as potential donors, was making it difficult to find a good match. Pheresis was a 50-50 shot, but it was the only option we had left to try to improve my chances for transplant. When I think back now, I wonder why we agonized over this decision — it should have been a no-brainer!

The Call

As it turned out, I never went through pheresis. About 10 minutes before I was to start the procedure on Monday, April 14, my nurse Leann came in and told me, “We might, might, might, might, might have a donor for you.” (Yes, there were 5 “mights”. I counted them.)

The moment I heard there might be lungs for me.

The moment I heard there might be lungs for me.

When Leann walked in, I was finishing up pulmonary rehab and Yvonne, my therapist, had just quipped, “Either I’ll see you tomorrow or you’ll be getting new lungs.” Yvonne was just one of many little Divine Messages that came through during that life-changing 24 hours.

The news sent an electrical current ripping through my body, from the top of my head to the tips of my toes. My first comment was, “Really?”, followed by a huge grin. Not exactly the brilliant statement I’d dreamed about, but I was caught completely off-guard. I looked over at my husband in disbelief, then quickly took a deep breath and reminded myself we had a long way to go before those five “mights” became the real thing.

An hour later, Leann announced we were moving forward. I burst into tears and made a soggy mess of my husband’s shoulder. Though we were far from a solid “Go”, we were on our way to finally realizing what we’d been working toward for so long. At the same time excitement and emotion overwhelmed me, my heart broke because I knew someone had died suddenly and their family was wrestling with one of the most difficult decisions they would ever face. I bowed my head to pray — for them, for my donor, for my family and for me.

Waiting_1

Homework helped pass the wait.

I went down for pre-transplant testing — blood tests and a chest x-ray.  And then we waited. About 10 p.m., I learned that I would be going down to surgery at 2 a.m.  It was a go.  Another miracle. They’d found a donor who had almost no antigens — my antibodies suddenly were a non-issue.

The next four hours were a blur of texts back and forth to my family on the West Coast, as well as prayers and good wishes from my Facebook friends across the country.  Two a.m. finally came and we headed downstairs.

 

The Surgery

pre-op

Waiting in pre-op. The family is sitting in front of me, munching away!

I was the only patient in pre-op, so my family was able to sit outside my cubby and chat with me. What I remember most is the sound of munching — they were chowing down on chips and soda. I, of course, had had nothing to eat or drink since around 2:00 that afternoon. My stomach rumbled mercilessly. But the mood was upbeat, and when my surgeon arrived, he announced that he’d had a good night’s sleep and a full breakfast.  He was ready to go.

Surgery was delayed three times as more transplant teams arrived at the donor site. The generosity of my donor family cannot be overstated. Because of their selflessness, they turned a profound loss into a second chance at life for many others. I am eternally grateful!

All the instruments, prepped and ready!

All the instruments, prepped and ready!

I went into surgery sometime around 6 a.m. on Tuesday, April 15. I’m a little fuzzy on times and details because by then they’d given me a happy shot.  I remember sliding over from the stretcher to the operating table. One team member read off the names of everyone there and what their job was (they tape the entire procedure). And then they placed a mask over my face and in seconds I was out. I’d sent a disposable camera into the OR with my surgeon, the amazingly gifted Dr. Bryan Meyers. The photos below are from my surgery:

Heart/lung machine

Heart-lung bypass machine

The heart-lung bypass machine.  In some transplants, they can let one old lung do the breathing while the other is removed and a new lung transplanted. My old gaspers were in such bad shape they had to use the bypass. I received my very first transfusion because the bypass requires extra blood volume. Technology is simply amazing!

Crappy lung

Crappy lung

My diseased right lung. It’s amazing that something this dark and shriveled could process any oxygen at all. Can you say “God’s perfect timing”? I couldn’t have waited much longer.

Warming Up 2

Pink, shiny and perfect new lungs!

My shiny new lungs! The one at the bottom is still covered in its protective cloth. They’re so pink they almost glow! Angie, my scrub nurse, said she’d never seen lungs so pink!

Dr. Meyers performing magic!

Dr. Meyers performing magic!

Dr. Bryan Meyers implanting my shiny new  lung. This photo brought tears to my eyes — at last, no more gasping. This moment marked the beginning of a brand new life for me!

Thumbs Up!Angie gives us the thumbs up — all went well!  I know this is me because I recognize the feet!

Old lungs packed for research

Old lungs off to the research lab.

My old lungs, ready to go to the research lab. I donated them in hopes they will help researchers discover better treatments or even a cure for pulmonary fibrosis. The small container at the top includes unused pieces from my new lungs. Since my donor was 6 feet tall and I’m 5’4″, Dr. Meyers removed the upper lobe of my new left lung and did a wedge resection on my right. The day after my transplant, Dr. Meyers went back in to remove some packing and clean up any blood clots or incidental bleeding. This is standard procedure at Barnes in many lung transplant cases. He saw that my right lung was still a little too big, so he removed a second wedge. I’m happy to say that they fit perfectly now and are working beautifully.

By 1:00 p.m. I was out of surgery. The whole thing took about 6-1/2 hours.  I remember nothing until they removed the breathing tube on Friday, April 18 — Good Friday! But that’s a story for another post…

Before I go, I want to thank everyone who prayed for me, sent me notes of encouragement and positive energy, and offered advice and insights from the perspective of “being there.” I couldn’t have done this without you. And to my donor family, thank you for giving me life. You are and will remain in my heart and in my prayers forever.

 

 

 

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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.

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 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.

Roid Rage

PrednisoneI’ve been on high-dose prednisone to  treat my pulmonary fibrosis since I was diagnosed two years ago. I don’t have a moon face or ankle swelling often associated with prednisone use, so I always figured I’d gotten off easy when it comes to steroid side-effects. Silly girl. I should have known nothing is easy or simple, especially for me.

When I broke my ankle two months ago, we discovered that prednisone has been eating away at my bones.  My teeth have suddenly become quite sensitive, another prednisone by-product. And now, the greatest gift of all — lousy healing. As the final cast came off my ankle last week, the top three inches of my incision was a gaping wound. Okay, gaping may be a bit of an exaggeration.  It’s maybe a quarter-inch wide and an 1/8-inch deep. Not huge, but not healed either.  Bone Doc wanted to take me back to the OR to debride and re-close the incision. But that would have required at least a regional block (too deep for a local) and more futzing with the Optiflow, not to mention increased risk of transplant-thwarting respiratory issues.  So, we opted to go to the Wound Care Center at St. Luke’s.  I’m so glad we did!

Wound Doc says it looks like it will heal fine — we just need to start using the appropriate dressing and give it 2 or 3 months. That’s fine by me. Every couple of days I goop the wound with polysporin and apply a hydrocolloid dressing.  The doc says the waterproof dressing creates a nice moist, warm environment to encourage granulation (what my mom used to call “proud flesh”), which forms the underlayment for new skin. The prednisone will slow things down, but healing will occur. Whew!

The other disappointing news from last week’s de-casting session was that I am still non-weight bearing on the ankle. Thankfully, Bone Doc says I can start putting my Frankenboot to use next Frankenbootweek, just in time to help in the kitchen for Turkey Day. But he wants me to hold off on physical therapy for a little longer to give my roid-ravaged bone some extra healing time.

My loathe/hate relationship with prednisone continues. But despite the bumps it’s added to my road, I still have much to be thankful for.  And, after my November 26 visit with the transplant team at Barnes, I hope there will be even more to celebrate.

Tips for Dealing with Steroid Side Effects 

  • Up your calcium intake to at least 1500 mg a day with a combination of calcium supplements and calcium-rich foods such as milk, cheese and yogurt. Remember to up your Vitamin D intake, too — 400-800 IU daily.
  • Weight-bearing exercise (like walking) will help stabilize bone mass and burn calories.
  • Steroids affect metabolism and fat distribution, increasing appetite and adding fat deposits to the abdomen and neck. Focus on eating a healthful low-fat, low-calorie diet to counteract weight gain.
  • Fluid retention is common with steroid use. Reduce (or eliminate) salt-use in cooking and at the table, and look for low-sodium versions of typically high-sodium foods such as: chips and crackers, soups, prepared foods, canned foods, dressings and condiments, and restaurant meals.
  • Steroids suppress the immune system, so get a flu shot, wash your hands frequently, and avoid anyone who is coughing or sneezing.
  • Tell your eye doctor and dentist about your medication, since steroids can cause cataracts or glaucoma as well as increased tooth sensitivity.
  • Other side effects to watch for and discuss with your doctor:  hip pain (may indicate aseptic necrosis of the hip joint), insomnia, mood changes, elevated blood pressure, elevated blood sugar.

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!