Pulmonary rehab update

Mes amis!

With the exception of a bitterly cold day with a high of 19 degrees, and Thanksgiving Day, I have faithfully attended pulmonary rehabilitation every Tuesday and Thursday for a dozen weeks now. I still guard my energy stores avidly, but on my good days, I can squeeze in a bit more excitement. For example, last week I drove myself to and from pulmonary rehab, put in my full hour plus of exercise, hosted three midwives and a husband for our weekly get together, and still won at Scrabble after they'd gone home! On the other hand, I definitely overdid it. Showering was my most strenuous activity the following day. Yet despite my fatigue, I couldn’t suppress my satisfaction that I’m at least a little stronger than before I began this program.  

My rehab sessions have begun to follow a predictable pattern with some hard-won modifications. I always begin and end each session with five minutes of stretching to warm up and cool down. I do a circuit of "Arm-R-Cise," ten upper body exercises in a row, beginning with boxing jabs and ending with reverse speed bag (the air version of the small punching bag). Thirty seconds of each exercise adds up to five minutes of burning arms and then huge relief upon sitting down again. The eventual goal is to reach the maximum ninety seconds per exercise. "Leg-R-Cise" is based on a similar premise and ranges from hamstring curls to chair stands, repeatedly alternating sitting and standing with arms crossed x-style on the chest. I also use free weights for additional arm strengthening. During my initial sessions, I progressed from six to eight to ten to twelve minutes on the treadmill. After pleading for a bit more of a challenge, I finally received permission to advance my pace from 1.5 to a blazing 1.6 miles an hour. Unfortunately, I've maxed out my upright exercise strenuousness. Pulmonary hypertension sometimes causes a paradoxical drop in blood pressure during exercise, putting patients at risk of sudden fainting with excessive exertion. Clearly, this is suboptimal on a moving treadmill, however slowly I'm walking. Due to this limitation, my most strenuous exercise is on the Nu-Step, a recumbent elliptical machine. This decreases the concern for complications following a drop in blood pressure, since the machine is human-powered and stops when I stop. If I feel lightheaded, I'm already seated and don't risk a fall. The Nu-Step lets me feel as if I'm getting a "real" workout, even if I'm only up to level four out of ten after twenty-four rehab sessions. Since I started at level two, this feels like an accomplishment.

Repeating the same set of exercises twice weekly, however varied their order, can grow monotonous very quickly. However, Deb and Shawn, our faithful team of respiratory therapist and exercise physiologist, constantly think of new ways to make the sessions more enjoyable. Distraction is a recurrent element of their schemes. From the weekly trivia question, I’ve learned both that Jonathan Priestly discovered oxygen in 1774, and that the heaviest recorded pumpkin weighed 2,323 pounds this October. Also, you disperse 39,000 organisms when you sneeze! Their patter of light conversation keeps us energized as they come to check oxygenation levels at the halfway point of each exercise. The team’s joking banter has built camaraderie within my cohort of rehab participants, bridging the gap between me at 36 and the oldest participants in their 70s. We now inquire solicitously after each other’s pets and grandchildren and spouses like old friends, and worry about each other if someone is absent for a session. There’s nothing like a stressful experience to unify a group quickly. The double stresses of enforced exercise and transplant preparation have served quite adequately. Even if I'm not feeling my best, I always leave an exercise session feeling supported by my rehab buddies and gratified that I'm strong enough to bear the stress of transplant surgery. Officially, a course of pulmonary rehab ends after thirty-six sessions. In my case, I'll continue to attend until my transplant surgery in order to sustain the benefits of increased activity tolerance. Maybe by my next update, I'll be up to level five on the Nu-Step...

This is a special nasal cannula called an oxymizer; it conserves oxygen in the moustache to give a slightly larger dose.
My fingers are too cold to give accurate oxygen readings, so the headband keeps my forehead probe in place. Except that I have way too much hair for a measly headband. It's a good look, right?

Three good things

Hello, dear ones!

Once upon a time in the tiny town of Davidson, North Carolina, a college student had a very bad day. Nothing particularly horrible happened. No tests were failed or friendships ruptured, yet it ended with a disconsolate college junior wandering down the dormitory hall, sobbing. Next door, she found kind friends who offered the appropriate collations, apple juice and Fig Newtons. They sent her to bed with a promise to check on her the next day, and they did. Three good things, they asked. What are three things, however small, that happened today? The good things, offered with gratitude, lightened the burdens of the day and brightened its dull monotony. They began a tradition in the fall of 1998 that has continued by phone and email, and occasionally face to face, linking two friends across years of change.

Multiple research studies document a strong correlation between the cultivation of gratitude and sense of personal well-being. (Skeptics can email me for citations.) As a twenty-year-old college student, however, Janice was merely relying on her instincts of kindness and compassion to help a friend see hope on the other side of admittedly transient despair. Bad things, discouraging, frustrating, even heart-breaking things happen daily. A planet populated by imperfect, irrational humans all acting on the primal urge to dominate others is bound to be full of trouble. Yet lovely, astonishing, magnificently good things are everywhere present. My mom used to tell me that you can't always get what you want, but I've decided that it depends on what you want. I'm not taking any trips to the Maldives or even Montreal this year, but I have the security of a loving home, generous friends, and wise doctors. 

On the fourth Thursday of November, millions of Americans enjoy a day of indulgence, feasting on roasted poultry with a side of football. Many pause to count their blessings: family, friends, and food. In gratitude for all the years I've been able to count my blessings, here are my three good things today:

1. My stable health. At the moment, I'm a little cranky from a few days of a stuffy nose and minor sniffles. My nasal passages haven't thanked me for the extra irritation of cranked up liter flow, since my oxygen saturation is always a little worse when I'm congested. Although I haven't enjoyed the half a week of hoarding tissues, it reminds me of how blessed I truly am. While I experience lots of shortness of breath and plenty of fatigue, I very rarely feel unwell. I can enjoy the activities of my day without excessive distraction as long as I plan ahead sufficiently. One of my pulmonary rehab buddies who was taken to the emergency room during a session has now been hospitalized until she receives a transplant. Yet I can continue a life of ordinary pleasures, baking chocolate chip cookies, curling up with a pot of tea and a good book, watching the colors change on the Gulf Tower through my window at night. I cherish the moments that are mine to enjoy at my own pace.

2. An amazing support system. My last day of work at Brigham and Women's Hospital was July 12, 2013. Until this move to Pittsburgh on August 22, 2014, I was physically encircled by the sisterhood of my midwife and nurse colleagues. They called, brought meals, made hot chocolate dates to get me out of the house, held bake sales, sewed me a beautiful quilt, and always reminded me that I was cherished as a colleague and friend. Even now from afar, I'm still Skyped into midwife baby showers and blessed with loving messages. My Highrock church family was just as amazing. From prayers to meals to reading lists for allaying boredom, my beloved friends kept me sane, nourishing me body and spirit. I've been blessed to make friends in the doctor's office waiting room, at a housewarming, at French class, and to keep those friends over the years. Both Peter's family and mine helped us move in and furnish our apartment. My mother-in-law keeps me well-stocked with knitted hats, scarves, and sweaters, often spinning the wool herself on her spinning wheel. As I establish connections in Pittsburgh through pulmonary rehab buddies, friends of friends, and church acquaintances, I'm filled with joyful memories of all the love poured out on Peter and me from all of the remarkable people in our lives. I take encouragement from Psalm 23: Even though I walk through the valley of the shadow of death, goodness and mercy follow me, and my soul is restored.

3. Serendipity. After the initial flurry of activity to set up our Pittsburgh apartment, I lapsed into homesickness, with uncharacteristic moping and boredom. Within a week or so, Peter decided that it was time for me to make more Pittsburgh friends than the two we had known on arrival. Led to the local birth center by a giant mural of a pregnant woman, he escorted me to the front door. I rang the doorbell, then heard a voice come through the speaker, "May I help you?" Short pause, deep breath, then, "Hi! I'm a midwife who's just moved to Pittsburgh for healthcare, and I'd love to volunteer for you." That day, I met several of the midwives who staff the birth center, as well as attend births at a nearby hospital. They gathered around Peter and me in their office kitchen, and midwifed us. They made me feel their commiseration for my struggles, but not the pity that so often follows. If I was a midwife reaching out to the local birth community, then they would gather me in. In typical midwife creative problem-solving fashion, they found a role for me. The Midwife Center mentors new graduate nurse-midwives through a yearlong fellowship program and also takes on midwifery students in the final stage of their studies. I now meet with these women once a week and offer myself as a mentor and sounding board, an excuse to relax over dinner, a person outside the clinical setting who offers extra experience. I’m still amazed that a drop-in visit to The Midwife Center would result in an unexpected way to make friends while remaining engaged in my profession. 

Thanksgiving has passed, but as we begin Advent, a season of expectant waiting, what good things are you hoping for, celebrating, manifesting?

This post lovingly remembers PDD, whose joyful and radiant life was interrupted much too soon. Thanksgivings with your family are some of my most treasured memories. I love and miss you always.

The Midwife Center mural

Saturday in Sewickley and the disappearing spoons - a mystery

Hello, friends!

On a brilliantly sunny Saturday not long after arriving in Pittsburgh, Peter and I were up for a little local exploration. Still slightly drained from an active week, I woke up with just enough energy for one activity. We took a picturesque fifteen minute drive to Sewickley, the closest local equivalent of a New England village. Bookstore visit, village stroll, and lunch were completed by one of Peter's favorite pastimes, sporty car window-shopping. Total time expenditure: 2.5 hours. Total energy expenditure:100%. The five minute walk from the car to our apartment was misery. Peter eventually snaked my oxygen tubing out our front door and down the hall to connect me with a higher dose of oxygen for the last few steps. Three hours after being tucked into bed, I had just enough energy to prop myself on the couch for the rest of the evening. I had used all my spoons.

Christine Miserandino (www.butyoudontlooksick.com) is a lupus advocate and blogger who created the Spoon Theory to explain the daily experience of lupus to a friend. She wanted to illustrate the necessity of making conscious choices about every energy expenditure every day for individuals living with a chronic illness. She gave her friend a dozen spoons, her energy quotient for the day and her constant reminder that she had a chronic illness. Christine took them away one by one as her friend weighed clothing choices (zipper vs buttons), transportation options (driving vs subway), and food selection (utensils vs hand held), the activities of a typical day. In theory, the subway requires fewer spoons than driving, but not while standing in the middle of a jostling, constantly shifting rush hour crowd. Cutting up food with a lupus-inflamed elbow is no fun, but neither is only finishing half your sandwich due to jaw pain from chewy bread. And not enough fuel means another spoon gets docked.

I complete a spoon count every morning. Lupus and related lung disease have made it essential. A good or bad day yesterday means more or fewer spoons today, and they have to last all day. Using all my spoons usually means my day is finished. A nap might replenish a few; a long nap might even provide an afternoon second wind, with the caveat that it will now take less activity to use up the remaining spoons. Peter often helps with my morning ablutions, not because I'm incapable of bathing independently, but because doing so usually means that after shower, clothing, and breakfast comes preferred activity, not nap. Excitement-induced distraction from "spoon management" on a less energetic day could result in that Sewickley Saturday's problem: lots of day left but no more spoons. For a really worthwhile and special activity, a friend's wedding, an evening at the symphony, I might push myself, borrowing against the next day's spoons. Such debts must always be repaid with interest, though; the next day might not bring me beyond my front door.

In some ways, the worsening severity of my illness has made coping a bit easier. With an oxygen tank in tow, at least there's conspicuous external evidence, requiring slightly fewer explanations. Even with the extra effort it takes to get to pulmonary rehabilitation sessions, the physical conditioning has gradually increased my spoon supply, not in entire spoons but a quarter-spoon here, a third there. I'm grateful for the bonus spurts of energy. I'm hopeful they'll be sufficient to tide me over until a transplant resolves the effects of advanced respiratory disease.

As always, a good day is in the framing. A good day is one when I'm still breathing, energetic enough to fuss about never having enough spoons. Every morning, I wake up knowing that I'm not alone, that love surrounds me, flowing from heaven, from friends and family, from kind strangers, from the compassion I try to grant myself. As Roethke says in "The Waking," I learn by going where I have to go. This may not be the path I would have chosen, and I certainly would have stockpiled a few more spoons, but I can't deny a tinge of elation that I'm still moving forward.    

Waiting for snow

Where are you on "The List"?

Hello, dear ones!

Last week marked two milestones for me. First, seven years of marriage with my wonderful husband, Peter, have been such a gift. In the Canticles, Solomon extols the virtues of love. "Many waters cannot quench love, neither can floods drown it." (SoS 8:7) Peter and I have faced many floods together in the past two years, both related to my declining health and the ordinary struggles of daily life. But doing the work of loving another imperfect person as well as I endeavor to love myself is a source of renewed joy and gratitude as we walk through life as partners.

Second, I came through my first set of major pulmonary testing since our move to Pittsburgh, scoring with respectable, if not flying, colors. Since our return from Cleveland Clinic, lots of you have kindly inquired about my status and wondered about my placement on "The List". For solid organ transplant candidates, "The List" both is and is not a document ranking patients with end-stage organ failure. The transplant waiting list is actually a pool of eligible recipients, all deemed sufficiently ill to require a replacement organ, but sufficiently healthy to rebound from the stresses of surgery with renewed vigor. Lung transplant candidates are assigned a Lung Allocation Score (LAS) based on multiple factors including age, blood and antibody type, disease diagnosis, relative lung function (disease severity), BMI, distance walked in six minutes, and minimum oxygen dosage at rest. The LAS attempts to balance the likelihood that a person will survive another year without a transplant with the likelihood that the person will thrive post-transplant. Scores range from zero to one hundred, with an LAS in the mid-thirties as the minimum for transplant listing. While sicker patients have higher scores, this alone is insufficient for a match. When an organ becomes available, an algorithm eliminates obvious incompatibility: candidates with the wrong blood or antibody type, height, and other medical factors. Remaining candidates are ranked based on still more factors, acuity and possibly proximity to the transplant center among them. For lung transplants, time on the waiting list rarely affects candidate selection; it's considered only as a tie breaker for two patients in the same geographic zone with identical scores.

While people often imagine jets zipping across the country, carrying organs in coolers to and fro, eighty percent of donor organs are transplanted to local recipients. The US comprises eleven geographic regions. Generally, donor organs are first offered within their own region, then to adjacent regions, and finally to more distant regions, in hopes of rapid transplantation and minimized complication. Removed from an active circulatory system, an organ's limited shelf life requires prompt transfer to another living host. While timing varies, lungs need to find a new home in approximately six hours, not enough time for zipping from Seattle to Orlando with an organ still intact. 

When I saw my pulmonologist in Cleveland last Thursday, she mentioned that she'd recently had a near match for me, an almost good enough set of lungs. She received an offer for the lungs of a six year old that were a suitable size, except that the trachea was too small an airway for an adult. Pediatric candidates receive priority for pediatric organs, but adults can receive these organs if they match donor criteria. While I felt encouraged that my transplant is truly possible, I wasn't sure how to feel about the potential donor. It's disheartening to think that a six year old's lungs are adequate to meet my body's oxygenation needs, and also to consider that a family had to contemplate donating the organs of their six year old child. So far I've been listed at Cleveland Clinic for one year and five months, and at UPMC for six months. Some days, it's disheartening to consider how long I've waited and how much longer the wait could be, but this is the only legal organ transplantation system we have. And yet I see the blessings of my life very clearly. According to the Organ Procurement and Transplantation Network (HHS), an average of twenty-one people in the United States dies each day while awaiting transplant. In the last two weeks, two of my pulmonary rehab cohorts have been taken to the ED during our sessions due to acute respiratory illness. For all my struggles, I enjoy my life in relative health. Though the journey is long, I'm still satisfied to be me.

Oxygen for Cleveland: squeezing R2D2 in X-wing fashion

Pittsburgh Symphony Association "Flaunting the Flutes" fundraiser

Oxygen transition: Dalek invasion

Hello, dear ones!

It's finally happened! After several weeks of confusion due to dosage changes, supplier scarcity, factory backlogs, and scheduling mix-ups, I've made the transition to liquid oxygen. On Friday afternoon, Lance, the driver for my new oxygen supplier, brought two reservoirs filled with liquid oxygen. The barrel shaped containers bear a distinct resemblance to the Daleks, a recurring cyborg nemesis in the Doctor Who saga. With sturdy metal bodies and forward-facing tubular extensions, the waist height tanks seem primed to begin screeching "Exterminate! Exterminate!" Luckily, no Doctor Who villains have materialized to date.

Darla, my temperamental portable oxygen concentrator, is primed to enter retirement after mostly faithful service. In her place is my new ice princess, an insulated portable liquid oxygen container resembling a large vented thermos. Potential names for my new companion include Jadis (the White Witch in The Lion, the Witch, and the Wardrobe), Elsa (the ice princess in Frozen), and Tilda (the actress who plays the White Witch in the Disney film). I'm also open to further name suggestions.

To fill Jadis/Elsa/Tilda, I click her onto an appendage atop one of the Daleks. Locking the unit in place activates oxygen transfer. I keep one hand on the side of the container, watching as white tendrils wisp out of the reservoir, waiting for the knocking sensation that indicates a full portable unit. The gradual conversion of oxygen from liquid to gas covers the unit in frost by the time that it empties. Because I've transitioned from a battery-powered unit to a refillable tank, my outings have likewise transitioned from morning, afternoon or evening length to a mere two hours. I made several requests of my oxygen supplier for a second or even third tank to extend my excursion time. The UPMC pulmonary rehab staff seconded my request based on a desire to maintain my activity level and for emergency backup purposes. One faxed prescription later, I'm hopeful that another portable container will result from either an exhaustive search of the supplier warehouse or factory production of the requisite unit. If hope alone is insufficient, there's always persistence.

After Lance carted off my old home concentrator, the apartment settled into near silence. The low-pitched droning hum that sometimes overwhelmed conversation was replaced by the tinkling susurrus of air bubbles humidifying my oxygen supply. My apartment now sounds like a dentist's office, with the requisite fish tank burbling in the background. Reclaiming the quiet is curiously satisfying. My thoughts seem louder now, no longer drowned out by the constant distraction of the machine's interminable thrum. Peter is equally relieved by fewer auditory distractions.

Lance returns every Tuesday and Friday to replenish my oxygen supply. Liquid oxygen dissipates at an approximate rate of one pound per twenty-four hours.  With my increasing oxygen requirement, I expend the remainder relatively quickly. Still, once I have another portable unit to stretch my time away from home, I may actually increase in mobility. The new tanks administer up to fifteen liters per minute, more than twice the rate of my old concentrator. Despite persistent shortness of breath, pulmonary rehab has made me stronger, better able to perform my daily tasks. If I can muster up a bit more stamina, then watch out, Pittsburgh! I'm trotting down the river trail to Herrs Island.



Shout outs are in order: Thank you to my father- and mother-in-law, Peter and Denise, for your visit, and the bonus of my sewing machine, my desk, and a really big TV! John and Katelynn, you infuse the cliche of dinner and a show with tear-inducing laughter! Erin and Brigham midwives, you are the best! Thanks so much for including me in the baby shower!

liquid oxygen tanks

Dalek

Coffee shop tour: Part one

Hello, friends!

This morning, Peter dragged me out of bed to accompany him to one of his favorite coffee shops, 21st Street Coffee and Tea (www.21ststreetcoffee.com). Last night I (foolishly) agreed to tag along so that I could both get out of the apartment for a bit and get some editing done. But the day dawned foggy, with a hazy mist threading the surrounding foothills, the perfect sort of day for rolling over to steal another hour's rest. I felt it was best to comply with the day's obvious hints, but apparently a deal is a deal. Peter nudged me into the shower with promises of tea and pastries; the best of us is not immune to a bribe...

21st Street CaT sits near the corner of Smallman and 21st Streets in the Strip District. Historically, the area housed many mills and factories that gradually gave way to wholesale purveyors of fish, pasta, produce, and other foodstuff. However with the hipster invasion, it now additionally hosts trendy eateries, boutiques, and converted lofts, as well as a market with the most expensive bag of King Arthur flour I've ever encountered. (In its defense, Marty's Market also sells delectable chocolate covered gelato pops.) This is a great little coffe shop, comfortably spacious. The work of local artists lines walls of exposed brick. A lofted work space for telecommuters overlooks the coffee bar and multiple tables and chairs. There's a quiet buzz of background sound, enough to mask a conversation or phone call, but not so loud as to distract mental focus.

21st Street CaT brings in fresh pastries daily from two local bakeries, my newfound favorite, La Gourmandine Bakery, and Bella Christie Sweet Boutique. La Gourmandine is run by two French transplants, who make a nearly perfect traditional croissant. Light, flaky, buttery, beautifully layered, this is one of the top three croissants I've had in North America. Peter's apple walnut pastry from Bella Christie was almost as delicious with flaky crust surrounding cinnamony filling. And let's not forget 21st Street's beverages. Peter was lured here by their Intelligentsia beans, a longtime favorite, and ensnared by their coffee orthodoxy. The hardcore baristas reluctantly permit milk and sugar in their coffee but insist on dispensing it themselves in precise quantities. Efficiently friendly, they serve drinks and snacks with care. The shop carries Paragon tea in several varieties, including my favorite oolong Ti Kwan Yin. While bribery and coercion played some role in my visit to 21st Street Coffee and Tea, I'd gladly be bribed again.

Pulmonary rehab

Hello, wonderful ones!

UPMC pulmonary rehabilitation is now in session! Every Tuesday and Thursday until the end of December, lunchtime will find me with a group of fellow pre-lung transplant patients, hoping to mitigate the effects of our disease process. In twelve weeks the program attempts to improve a patient's quality of life by enhancing overall functional status and ability to perform activities of daily living. Chronic lung disease patients, those with illnesses such as COPD, cystic fibrosis, and pulmonary hypertension, quickly learn to dread shortness of breath and the accompanying panic that "I can't breathe!" We'd do almost anything to avoid it: skip stairs, avoid even slight inclines, skip beach trips to avoid the extra effort of walking on sand. But curtailing activities only worsens endurance and muscle strength, making each action even more energy consuming. A primary goal of pulmonary rehab is improved activity tolerance and resulting shortness of breath. Each ninety minute session includes education and exercise, stretching, weight and resistance training, treadmill, and seated elliptical, under the supervision and guidance of an exercise physiologist and a respiratory therapist. Multiple patients complete the exercise program during their scheduled time slot, each with instructions tailored to his or her disease process and physical fitness level. 

I was a little nervous to start an intensive exercise program, even one as individually tailored as this one. My first day included a reverse speed bag exercise that risked knocking myself out with uncoordinated punches. Fortunately my worst complaint was mild shoulder soreness. The next few sessions have been similar. Adequate tolerance of each rehab appointment means slightly longer or more intense sessions on the treadmill and elliptical and more repetitions of the other exercises at the next one. I'm always ready for a lengthy nap afterward, and my energy level for the remainder of the day ranges from slightly less peppy to exhausted. Progress is tricky, following the tradition of the tortoise, not the hare. Years of twelve hour labor and delivery shifts left me with good enough muscle tone to jump right in after nine months of physical activity confined to daily walks. However pulmonary hypertension can have the paradoxical effect of lowering blood pressure with physical exertion; my blood pressure can even continue to drop after I stop to catch my breath. I'm now up to twelve minutes on the treadmill but might have to switch to hallway walks, since moving treadmills and potential fainting spells are a risky combination. Even so, I'm enjoying the sessions. The repetitive actions are soothing, even meditative, a reminder that most of my body works pretty well. And I'm slowly adapting to the extra energy expenditure. Last night, Peter and I finally were able to reinstute date night, our beloved weekly tradition. The dinner at Piccolo Forno was satisfying. Even better was enjoying an evening conversation with my husband in a beautiful public space without fighting waves of drowsiness. 

A double lung transplant is a risky and potentially life-threatening procedure. If my diligence at pulmonary rehab facilitates a rapid and strong recovery from the surgery, then it's well worth the effort. The health benefits and eventual extra energy I reap now are a welcome bonus. 
    PSA: Flu season is upon us and lasts through spring. If you are able, please get your flu shot! Even if you're healthy enough to fight off the virus with no ill effects, others you may expose, especially those medically unable to receive the vaccine, may not fare so well. Please care for your health! It's an irreplaceable gift.

Pittsburgh evening clouds

Looking homeward from the 16th Street Bridge

Birthday musings

Hello, wonderful people!

After three weeks in Pittsburgh, I celebrated my thirty-sixth birthday last Wednesday. It was a bittersweet day, filled with reminders of how much I love my profession and with the joy of celebrating with Peter, but also with a deepening sense that I'm far from home and out of my element. While I appreciated Boston's beauty as a city of abundant greenspace, I grew to love it deeply as a place of emotional, spiritual, and occupational wholeness and community, as my home. The nearly seven years I've spent there so far are the longest I've lived anywhere as an adult, close to the longest I've lived any place ever. The transition from a place of familiarity coupled with the passing of another year is a liminal space for self-assessment as I enter a new phase of life.

I'm not thrilled about moving away from the wonderful security of my Boston support network to a city I associate with the Rust Belt and repeated blood draws. However, moving to Pittsburgh is the safest, most prudent way to care for my health at this time. So I move on, not suppressing or ignoring unpleasant feelings, but letting them run their course as I keep moving forward.

Despite any sadness I have due to leaving Boston, I'm grateful that my status on the transplant list has advanced enough to make this move a logical and appropriate one. I'm grateful that my husband's job allows him the flexibility to work from home, wherever that home might be. I'm grateful that between the Affordable Care Act and Peter's excellent insurance, there's no cap on coverage for transplant medical bills that could top $800,000. I'm grateful that we found a tenant for our Boston apartment before we left for Pittsburgh. I'm grateful for all the love still flowing from Boston, the cards and texts and phone calls and emails and Facebook posts, all rephrasing the kindness and generosity I've received in abundance over the past year and a half. I'm grateful for the gracious Pittsburgh hospitality of Peter's high school friend and his wife, who have become my friends as well. Despite the stress of so many changes, I'm blessed with a really good life.

My birthday prayers are for a more peaceful world, greater compassion, and deeper connection with others. The transplant will happen when it's time. Well, I'm off to the symphony to hear Sibelius, Smetana, Prokofiev, and Bruch as the final gift of my birthday week. It's going to be a good year!

13/Pittsburgh Symphony Orchestra 9

Settling in

Hello, wonderful people!

Today completes two weeks of residence in our new city. Pittsburgh is beautiful green hills, three big rivers, and a ridiculous number of bright yellow bridges. It is gritty in ways that Boston is urbane, a city of doers to Boston's thinkers. Friendly to a fault, the city slightly unnerved me as a place where every passing stranger says, "Hi!" But for all my homesickness for Boston's standoffish intelligentsia, Pittsburgh is growing on me. There's no shortage of hipster coffee shops, tasty bakeries or avant garde art. Plus affordable housing with indoor parking connected to my apartment building! We have a three bedroom, three bathroom apartment, big enough to comfortably host visitors and still give Peter a home office. Settling in will take some time, but it's looking promising.

Now that we're ten minutes' drive from University of Pittsburgh Medical Center (UPMC), the transplant team has interpreted our presence as an invitation to monopolize our time. So far we've spent half a day at the hospital each week, and next week promises two days of appointments. After seeing the Pulmonology and transplant surgery teams so far, I'll get set up with a primary care doctor and start pulmonary rehab. The biggest medical development to date is having to give up Darla, my portable oxygen concentrator (POC). Despite our love-hate relationship, I have her to thank for the level of independence I've maintained so far. Having a machine that will keep puffing oxygen as long as the battery is charged has afforded me the freedom to set my own schedule, as long as I stayed reasonably close to an electrical outlet. Unfortunately I need to transition from intermittent to continuous oxygen, and no POC is equipped to do that at a rate higher than 3 liters per minute. My current oxygen dose is 6 liters per minute at rest, more when I'm up and moving around, so an oxygen nurse and transplant nurse practitioner are hashing out my new oxygen doses. They will also decide whether liquid or gas oxygen will better serve my needs. They've already warned me that I'll be more limited in my activities due to the finite quantity of oxygen each tank can hold. While it's disappointing to have my movements limited even further, paring down to the essentials of a few good friends and really good chocolate is always worthwhile! There aren't any updates on how soon the surgery could be. Apparently there are fewer organ donors this year, so everyone is waiting a bit longer. Prayers, love vibes, and positive thoughts for patience and readiness are all appreciated!

Finally, sending a shout out to our families, Peter and Denise, and Julius, Linda, and Ada! We couldn't have moved in without your considerable help. No more trips to Ikea, though, right? A second shout out to Jen and Sam! Thanks for bringing Highrock to Pittsburgh for us. All other potential visitors, just let us know you're coming.

Heinz 57

Heinz Lofts

Allegheny River and Pittsburgh Hills