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