Life-Learners

 

Gallup/Clifton StrengthsFinder “Learners”: You love to learn…the outcome of the learning is less significant than the "getting there." 

It was roughly three years ago that my pulmonologist in Cincinnati first mentioned “transplant” after reviewing my declining pulmonary function tests.  The truth was that I had come to that revelation some time before.  After doing enough Google and PubMed searches, I knew that an FEV1 less than one liter per minute correlated with a significantly poor quality of life and was often pre-requisite for consideration of lung transplant.  Of course the gravity of that conclusion carried much more weight coming from my doctor. 

 

As lung transplant went from a clinical hypothetical to an ever more serious reality, I tried to soak up as much information as I could - from journal articles, United Network for Organ Sharing and Organ Procurement and Transplantation Network statistics, and the transplant centers themselves. 

 

I also found a trove of pre and post-transplant testimonies in the blogosphere.  Patients’ and families’ stories of determination and successful transplant outcomes have given me hope and optimism for my own future.  As I read blog after blog, I found a certain affinity and solidarity with young adults who have cystic fibrosis.  They, too, face transplant in the prime of their lives with homes mortgaged, marriages started, and careers advancing.  Yet one key difference with CF is that the disease is almost always diagnosed very early in life and often carries implications for health or lack thereof from a very young age.  Being sick, anticipating eventual transplant, and respecting the fragile balance of life and death are part of the lifelong hand that CF patients are dealt. And while the diagnosis and prognosis of CF are hardly enviable, that experience is different from my own.

 

To be a thirty-something accustomed to, even identified by his activity level, first as an athlete and runner, then as a physical therapist and energetic father, it felt so unfair to lose my endurance, my hobbies, my activities and my identity little by painful little.  While the progression of my disease has been relatively slow, my completely unexpected and indefinitively diagnosed reality is a unique affliction.

 

In my quest to learn about and better appreciate my circumstances, I did find another companion on this rarely travelled and far less chosen road of mine.  The story of my new friend Joyce has striking similarities to my own: a thirty-something nurse practitioner, with a loving spouse and growing family, whose endurance suddenly and inexplicably began to decline a few years ago.  She passed through a similar gauntlet of diagnostic tests, medical center work-ups and insurance runs-around only to find herself listing for lung transplant earlier this year.  With a few emails and some cathartic conversation shared a couple weeks ago, I am fortunate to have found a kindred ally.  I encourage you to read Joyce’s blog, maybe buy one of her Donate Life t-shirts and certainly include her in your thoughts and prayers.

 

This certainly isn’t how would have chosen to “get there,” but I am ever grateful for the opportunity to matriculate alongside an inspiring cohort of life-learners and life-yearners.  
 

Nine Years

 
For less sickness and better health,
To far more good times than bad,
For numberless days yet to love, honor, and adore you.

Happy Anniversary to my sweet Eileen Marie.

Baby Prince George Alexander Louis of Cambridge Says

Born for More (Part 1)

I've received a few comments about my blog title "Born for More," so I figured I would write the story behind it. This will be in a two parts.

During one of my hospitalizations at Good Samaritan (I think it was number two of three in June), I got to reflecting back on my life. As I counted my abundant blessings I realized I've had a pretty remarkable 32 years:


Yes, that would be Prom.

Almost half of those years (14.5!) have included my best friend, biggest supporter and beautiful bride Eileen. How fortunate have we been to find such a love and partnership so early in life! We celebrate our 9th wedding anniversary this coming week. (Does anyone have any good pottery and willows gift ideas?)

We have two precious and precocious children in Adah and Eamon. It has been a joy to watch them start to play together this summer - wearing dress-ups, building forts, skipping to my Lou (maybe all the way to the Lou).

Adah & Eamon at Uncle Michael &
Aunt Carrie's house in St. Louis.

I am so fortunate to have found a rewarding job in physical therapy education and a College willing to take a chance on me early in my career. I've been privileged to mentor almost 200 Mount DPT students through their clinical internships and towards their careers. In the past year I've completed and published a systematic review with some terrific colleagues from the Ohio Kentucky Consortium.

Trips for service and for pleasure have taken me across the globe to Jamaica and the Dominican Republic, Ireland, Ghana, Mexico and El Salvador.

At play with little one orphaned at
HIV/AIDS hospice in Montego Bay. 

And the ever-caring response to my health trials reminds us that we have hundreds of devoted fans, friends, family and followers from L.A. to St. Louis to Cincinnati to Florida and countless places in between. Thanks for being one of those!

I look at this list of gratitudes and know that I lived a 32 years full of love, life, success and friendship. My life's stopwatch could tick its last tock, and I could be satisfied.

But I am convinced that I was born for more. Maybe 41.5 more years growing old with Eileen. (Yes, sweetie, I know that would be our golden anniversary); The chance to see our kids grow up, go to school, graduate and more; The opportunity to write another paper and accompany another several hundred DPT students on their clinicals. And travel to a few more corners of the world finding a few new friends while keeping old ones close, too.

Yes, I am convinced that I was born for more.
           

Born for More (Part 2)

My students will tell you that I often play music while they are working on reflective writing assignments.  It is remarkable how quickly classroom chatter falls silent and work becomes focused when the first notes of a song drift from the speakers.  I find that really good music, secular or sacred, has a spirit that brings clarity and calm when life seems anything but.

After leaving Good Samaritan Hospital most recently, Eileen and I knew we needed some spiritual direction and called Louise Lears, a Sister of Charity whose life has been intertwined with ours many times over the years.  Louise was our backdoor and around the block neighbor and a member of our parish's pastoral team in St. Louis.  She taught a health care ethics course at SLU and so she served first as a mentor, then more recently a guest facilitator for my PT ethics seminar at the Mount.  We are so fortunate to have her in Cincinnati serving on the SC Leadership Council.  Given her background, Louise understands health care, and we knew that we could use her wisdom and guidance discerning our transplant decisions.

After a wonderful, tearful and prayerful time together, Louise's advice was to listen to the Spirit's presence and direction in our lives.

Immediately following our meeting, it was time to do a breathing treatment - one of my first since leaving the hospital.  Given that my last two treatments at home had ended with ambulance runs, I had incredible anxiety.  With Eileen's hands resting on my shoulders and ear buds in my ears, I needed some music to help me stay calm.  I clicked on Pandora (the internet music service that plays music of a certain genre based on your choices of favorite artists) and their Over the Rhine station. 

OtR is a Cincinnati-based band whose music has frequently filled the MSJ Health Science classrooms serenading my students as they script their reflections and sketch their career aspirations.  Apart from the music, the lyrics penned by Linford Detwiler and Karin Bergquist are poetic. (They were ranked the 74th Greatest Living Songwriters by Paste magazine.  If my writing is half as good as their lyrics and prose, I am doing okay). The first song on the cue was "Born," from OtR's Drunkard's Prayer album. 

The first verse ends:

Intuition, deja vu,
The Holy Ghost haunting you.
Whatever you got, I don't mind.

Then the refrain:

I was born to laugh.
I learned to laugh through my tears.
I was born to love.
I'm gonna learn to love without fear.

Louise's prayer to listen to the Spirit still fresh in our minds, this was pretty powerful stuff.  Of course I had chosen the OtR station so maybe that song wasn't played by complete coincidence or Divine Providence.  But with the last words trailing off "without fear..." the second song on the playlist begins; it is "When Your Mind's Made Up" from the movie Once.

When your mind's made up,
when your mind's made up,
there's no point trying to change it.

When your mind's made up,
when your mind's made up,
there's no point even talking.

When your mind's made up,
when your mind's made up,
there's no point trying to fight it.

Louise was right.  The Spirit was present, very present (in a tear-draining, breath-taking, spine-tingling, heart-stirring sort of way) . 

We had our clarity and our calm.  Our minds were made up; confident that I was born to laugh and love - to live more, without fear. 

Quick Week Recap

I have a few blog posts rattling around in my head.  Hopefully I'll find a few spare minutes to put finger tip to keyboard.  In the meantime, this recap of the past week will have to do.

First a HUGE (so big that was a silent "H" as in "UGE") thank you to everyone who has read the blog, left a comment, offered a meal, planned a day with our kids or made a financial gift. We are overwhelmed and humbled by the generosity.

At about Noon last Friday we got a call from the transplant team at Barnes asking if we could come out to St. Louis for a series of appointments beginning Monday at Noon.  With the blessing of our bosses and the help of our parents and a few dear friends to stay with the kids, Eileen and I sojourned out west on Sunday night.  (If nothing else, the short notice and haphazard circumstances of the trip confirmed that we will do much better to plan our move in advance rather than listing and waiting for lungs from Cincinnati).

On the medical front I did another set of pulmonary function tests (FEV1 of 15-17% - about the same as June) and saw an asthma specialist Monday.  Dr. Castro is  a pretty big deal in asthma circles so when he said that transplant is our best treatment option it was oddly affirming coming from a physician of his repute.  The week also consisted of a bone density scan, some blood work and a pre-transplant education session with our nurse coordinator, Kelly. Our doctors appointments wrapped up with allergy.  I still have a milk allergy that is "off the charts," but no reactions to anything else they tested (other foods). The allergists were also a bit concerned about my lowered immune function (this was the reason Cleveland Clinic attempted an IVIG infusion in the fall) heading towards the winter with two little kids. They ordered a few more labs and have some treatment ideas, though there is a cynicism that this would change my lung function any more than serving as a preventative role during cold, flu and pneumonia season.

In between those appointments Monday through Wednesday we toured apartments and placed a deposit at Aventura at Forest Park.  It is a brand-new complex two blocks from our old apartment on Gibson, three blocks from Forest Park and only four blocks from Barnes.  We also visited St. Margaret of Scotland School to register and pick up a uniform for Adah.  She is super excited to start school and already shopped for her school supplies.


View St. Louis Places in a larger map

Thanks for reading.  I'll try to post a little more depth this weekend. 

                             

... to Do List (Part 1)

I’ll just come right out with it:

After much thought, prayer and discernment, Eileen and I have decided to pursue listing for lung transplantation at Barnes Jewish Hospital in St. Louis.  We arrived at this decision for many reasons, but the strongest reasons were these:

June was awful.  Between the lung transplant work-up at Barnes and three admissions to Good Samaritan Hospital in Cincinnati, I spent nearly half of the month in a hospital.  Of the four 911 calls we made from June 2^nd to July 4^th, the second one on June 19^th was the scariest.  As per usual it happened late in the evening, during my pre-bedtime breathing treatment. My arms and legs went cold, my face ashen, and I quickly lost consciousness.  My blood gas levels were off the charts (PCO2 of 97 and pH of 7.23 for those in healthcare) and required a BiPAP machine in the ER to help me expel enough carbon dioxide from my body to make room for more oxygen.  After several nights in the hospital (including a “romantic” 31^st Birthday with my lovely wife on June 22^nd), I was discharged on June 23^rd only to return later that night with another more mild asthma attack. (I actually remember all the details on that ambulance ride!)

I had a pretty nasty cough through that spell and I’m pretty sure there was some sort of infectious factor at play.  I certainly haven’t bounced back from these hospitalizations as quickly as I have I in the past.  I was exhausted and it took me a while to get back to my work at the Mount.  I remain on oxygen for any activity at all, except when absolutely sitting still.  I’ve struggled mentally with anxiety and panic attacks about my asthma and depression over my declining function and the sobering lung transplant statistics.  In short, my function at the start of July is measurably lower than it was at the start of June.

In the face of the sub-optimal transplant outcomes and expectations, I began to realize that my odds with these ever-more-severe exacerbations may not be much better.  Apart from the lousy quality of life running back and forth the hospital, I had to come face to face with the reality that there might be a back to the hospital without a future forth.   

The medical advice given for lung transplant has always been “wait as long as you can,”  “get everything out of your own lungs” and “every day with your own lungs is one less day starting your post-transplant clock.”  I had imagined post-transplant life as this stopwatch with some unknown duration on its face.  I had calculated every day, week, month or year that I put off transplant as time added to my stopwatch.  But I realized there were a couple of fallacies in this metaphor.

First, if one of these asthma attacks means I don’t make it to transplant, then the start button never gets pressed, no matter how much time I have banked.  Second, there are so many variables with transplant - some known and understood and some unknown and mysterious.  Just because I might wait a week, three months or two years it is not a statistical guarantee of a longer post-transplant survival.  It could be just as well that I am transplanted sooner and for variables about that donor, that surgical team on call, that available OR and many, many inexplicable others, my life carries on far longer than if I wait.  The reality is that none of us know and nor can we calculate how long our stopwatch has been wound. 

And so our family moves onward toward transplant with faith leading us to the right decision, the right time in the grace of this moment (kairos > chronos), and the right place.  

       

To-Do List (Part 2)

I would guess that my post on our decision to list for transplant might generate a bunch of practical curiosities about the process.  I’ll try to address some of those.

While we might have lobbied our transplant team to stay in Cincinnati, ultimately we decided that temporary relocation to St. Louis is the best option for our family.

1. I am blessed with a Mount St. Joseph program chair, dean and human resources office  that is willing to have me work remotely from Missouri.  Much of my work as the Director of Clinical Education occurs at distance anyway, with my students interning all over the country;  I have some fantastic colleagues who are quite able and willing to manage the campus-based work; and the coincidence of our accreditation report means there is ample data collection, analysis and writing that can be done online.  Likewise, the PT market is such that Eileen should be able to find clinical practice hours in St. Louis.

2. St. Louis is our second home.  (We did have to explain to the team at Barnes that our support of the Cincinnati Reds was non-negotiable, no matter where we are living). Between Eileen’s twin brother Michael and his wife Carrie, our Saint Louis University faculty and alumni friends, and our neighbors in Forest Park Southeast, we have a fantastic support network there.
 
3. Something feels right about transitioning our physical location and daily lives to coincide with this change in the phase of our medical care and our mental and spiritual focus toward transplant.

4. Being able to take our time to plan a move for our family feels like it gives us a measure of control in a situation with very little.  Instead of whisking off on a highly anxious, unscheduled drive or flight to St. Louis (and depending on traffic and weather to cooperate) when we get “the call,” we can plan this move on our terms and timeline.

-----

Our “best case” timeline for this process might look like this:
 
July 15-17, 2013
Visit St. Louis to find an apartment, pre-school and complete more pre-transplant testing, meetings and work-up. (Except in the most emergent of cases, it still takes at least six to eight weeks to officially be listed).

September 7, 2013

The Happy Couple: Katie & Mr. (W)right

Celebrate my sister Katie’s wedding to Andrew Wright.

Late September to Early October, 2013
Move to St. Louis.

Summer of 2014
Undergo lung transplant, post-transplant recovery, and rehab.

(The average wait time at Barnes is six to nine months. Given my lower lung allocation score, there is reason to believe my wait on the list could be longer than average, even upwards of two years or more. However, I also have a relatively easier stature, blood type and tissue type to match. Can one be faulted for a tiny bit of optimism?)

Fall of 2014
Return to Cincinnati and slowly transition back to our lives and work here.

Always and Forever After
Follow anti-rejection protocols including daily medications and regular follow-ups in St. Louis.

-----

One of the things about having a confirmed plan and tentative timeline for our transition is that we are better able to identify our specific needs - both practical (childcare, meals, yard work, house cleaning, packing, etc.) and financial (deductibles, travel, rent, utilities, etc.).

Knowing that many, many of you have asked (and asked and asked) what you can do for or with us, my stubborn, hard-headed, self-reliant, independent self has finally relented.

On the blog’s right side you will find one link to “Join Team Mosher” which takes you to our CaringbridgeSupportPlanner calendar with some initial volunteer requests for help this summer. 

There is also a link to “SupportTeam Mosher” financially through the online crowdfunding site YouCaring. (I would encourage you to visit our YouCaring site (by clicking on our family portrait rather than the “Give Now” button) to better understand our financial blessings and needs at this time.  I also feel obliged to offer this disclaimer that financial support through YouCaring is a personal gift to our family for medical and relocation expenses. It is NOT tax-deductible and IS subject to the IRS annual tax-free gift limit of $14,000. Please consult a tax professional with any questions). For those that prefer, gifts can also be made at U.S. Bank locations to the Peter D. Mosher & Eileen McGrath Mosher Revocable Trust Account.

Thanks for reading, helping with our to-do lists, and for your support in spirit, service, prayer, time, friendship, or financial accompaniment on this journey.