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February 11, 2020

Greetings Friends:
As many of you know by now, our beloved Steve Lewis passed away on February 6 -- two days before his 71st birthday -- in Phoenix, AZ.  He passed away from cardiac arrest stemming from pneumonia.  It was a long journey from diagnosis of Idiopathic Pulmonary Fibrosis in October 2016 to today -- where he is now free of his broken body.  Thank you to so many of you who reached out in so many ways during these past three years.  It meant so very much to us.  

Here is the obituary that will appear in the February 19th edition of the PARK RECORD newspaper:

Steven Orson Lewis was born in Salt Lake City on a record-breaking, snow-storm day after his mom traveled by sled to the hospital.  The weather drama surrounding his birth is a fitting symbol of the hard work ethic, passion, and tenacity that he honed and used when met with life’s adversities.  He traveled through his health storms with grace, humor and determination much like he faced all of his challenges.

After milking cows on the family farm in Hunter, Utah, Steve studied at Westminster College and then pursued graduate work at the U of U in architecture before being summoned to run the family business – Lewis Bros. Stages.  He started and ran a series of businesses related to passenger transit ending with the passenger shuttle service in Bryce Canyon National Park.

At heart, Steve was both spiritual and creative.  He loved writing, painting and enjoying nature with family and friends.  His favorite places to relax and explore were the beloved family cabin in the Uintah Mountains and the deserts of Southern Utah.  His international travels took him cycling through Europe including the Ionian coast of Greece, kayaking the Li River in China and service work and safaris in Kenya.  More recently, Steve and his wife, Deborah, embraced the desert charm of Arizona where Steve underwent a double lung transplant for Idiopathic Pulmonary Fibrosis. 

Steve will always be cherished for the gentle way he related to people in his life.  He always seemed to make time to listen and offer wise counsel.  His desire to be present and attentive to others’ needs would often make him late for his next commitment.  Like the time he almost missed his flight for a one-day business meeting and, in his haste, mistakenly left the engine running in his car in the airport parking lot.

Already missing those loving, soulful blue eyes are his wife of 31 years, Deborah, son Owen (Lisa) and daughters Emily (Luke), Alison, Stephanie (Clifford), sisters (Diana and Tina) and their families and nephew Matt -- who was like another son to Steve – and his family.  Also missing “Papa” are grandchildren Fiona, Jack, Lyra, Blake and Ella Jo.  To thank the multitude of medical professionals who were involved with Steve’s care over the years would take a separate page.  There were many and we give our heartfelt thanks. 

In lieu of flowers Steve would urge everyone to be listed as organ donors and to be sure and register to vote – and vote!  He might also request donations to the Pulmonary Fibrosis Foundation.  A “Celebration of Life” gathering will be held February 21st from 2 to 4 p.m. at Park City Community Church in Park City, Utah.   Pictures and memories of Steve can be shared on the www.SamaritanFuneralHome.com website.

Your gentle and generous spirit will be in our hearts always… and as Steve ended every Christmas letter for over 30 years…

God Bless Us Everyone!


Finally: Status of New Lungs

(Actually, this journal entry is by Steve.  Deb posted it on Caring Bridge for him.)

Yes, it has been months.  More eventful months -- in a challenging way --  than we would have hoped for. Despite my health challenges, since my last entry in Caring Bridge we have enjoyed a very lovely winter and spring in Scottsdale / Carefree AZ, at our new desert casa.

Unlike most of North America, we had great weather.  It’s been mostly unusually cool and wet for down here.  Perfect!! Highs in the mid 50s – 70s. Rain nearly every week.  Even an inch of snow this winter for the first time in 30 years.

Unfortunately, storms have not been limited to the weather.  Over the winter, I’ve had one set-back after another. Starting January with a tough fungal infection that is still persistently resisting a cure.  Then, late February I got a bacterial infection that took me very swiftly into septic shock. Bad stuff. Within a few hours of feeling a little chill, thank God, Deb rushed me to emergency, where they fought to keep my kidneys, heart and lungs from shutting down for 15 days.  The great pulmonary team at Norton Thoracic / St. joseph’s hospital pulled me back from the brink.

However, it took a toll, weakening me significantly.  I just spent another week at St. Joe’s with follow up complications.

I’m getting regular reminders from staff and other transplant folks that transplants are not for sissies.

However, I want to make very clear that as tough as this road has been, Deb and I wouldn’t change a thing.  (Well - maybe a few less infections.)

Of course I have been exceptionally blessed to share the last 32 years with a strong, smart and very easy to look at, wonderful partner.  In football terms “I way out kicked the coverage.” (Means I surprised myself, and most others, and kicked the proverbial football way over everyone’s heads, creating spontaneous chaos for the other team, and room for a good life for us!)

The lung transplant journey has been another great adventure, starting with the frightening diagnosis of Idiopathic Pulmonary Fibrosis in September of 2016, through the Transplant on April 11, 2018.  Since then we have been blessed with over a year of “bonus time” together, and with all of you.

Since the summer of 2016, Deb and I hit our bucket-list of trips as long and hard as we could, with wonderful friends (Mexico, Greece – Bike & Barge - and an Alaska Cruise.)

One of our biggest highlights  is the purchase and rehabilitation of this little casa near Carefree/Cave Creek AZ.  Deb and I have always collaborated well on big projects (blending families and our Jeremy home for starters).  We are the very proud parents of this one, too. No consulting lawyers, or threats to hold our breaths until either of us turned blue to get our way on remodel or furnishing decisions.

Twisting a hackneyed phrase, maybe “It actually takes a village to make a village.”  If I had to pick just one highlight of the last two years it would be our return to Park City, and our 30th Anniversary Party last September 2018.  It still gives me goosebumps when I think of that reunion of a lifetime of cherished friends and family (about 90 all together).  So many smiles, and so much love and laughter. I will never be able to fully express how much that meant to Deb and me. Your love and friendship have made it possible for us to overcome the endless challenges -- and celebrate the extraordinary joys -- of living, raising four independent kids, and the building and selling of two businesses.  The more recent Bryce Canyon Visitor Shuttle contract is my retirement project that goes a long way toward keeping me feeling both useful and able to use my long-honed skills. Our village-community strengthens and lifts all of us up.

Wherever this lung journey leads us, we are forever grateful to you all!

Your love and friendship have given us a wonderful life.  Our hearts overflow with that love and gratitude.

May God Bless You Always

P.S.  If you haven’t yet, please declare yourselves as organ donors.  One Donor can save or enhance dozens of lives. When you have “shed this mortal coil,”  as we all will, pass life on! Also, it may be a little corny, but attached (in the photo bin) is a feature story that appeared in our local Terravita Times Magazine.



Steve Lewis - The Last Domino !?!

Dear Friends and Family
It's Labor Day, which we have spent relaxing and reflecting on the labors of the past six months.

It was March 4 when we left Park City to pursue the lung transplant that I desperately needed.  Its been a longer and bumpier road than we had hoped for, but the paving crew seems finally to be getting out ahead of us to fill some of the nastier pot-holes.

You may recall my series of domino issues: 1) Not enough of one key anti-rejection drug, leading to 2) an over-dose of it, causing 3) Arterial-Fibrillation, followed by 4) a high dose of heart-beat suppression medication that went on too long.  The resulting 5) very slow heart beat sapped my energy, reversed my efforts to rebuild muscle, and caused light-headedness.  Eventually 6) I passed out in a store, (got to ride in an EMT truck!) discovered in the ER that 7) my heart rate was as low as 37 beats per minute (It takes 50 bpm to keep a normal person functional and rational at rest.)  

Then, finally, a week ago at the advice of a second cardiologist, 8) a pacemaker was implanted in my left shoulder.  It keeps my heart at 70 bpm, and raises it when I'm active!  Finally, I am making progress on rehabbing the remnants of my flimsy muscles, and no more dizziness.  I think the last of the dominoes has fallen at last!!

Meanwhile, Deb and I have continued to enjoy the creative distraction of renovating our new home-away-from-home.  Which is going great!  The painter starts tomorrow, and we should be able to start moving in next week.

Is there more Good News?  Indeed there is!  That will be just in time for one more monthly Lung Clinic visit at St. Joe's Hospital (9/14), which clears the path for us to return to Park City!!  We are so looking forward to seeing all of you, our beloved friends and family again!!

By coincidence, September 18 is the 30th Anniversary of one of the best days of my life.  The day Deb and I were married.  Sooooo, we here-by extend an invitation to all of you who have followed and supported us from afar with your calls, prayers, and uplifting cards and thoughts to join us in celebration of our anniversary, our return home. my new lungs, and new life!

Please save the date for a casual Open House style reunion: September 18, 4 to 7 PM, at the Jeremy Ranch Country Club.  Refreshments (beer, wine, and soda), plus a light buffet will be provided, plus a cash bar.

Hope to see you all soon!
Lots of love, and God's Blessing presence be with you.

Steve & Deborah

P.S. Organ Donation is the gift of life! 
I can't close these entries without making a plea that all of us are signed up as organ donors. Be sure to pass this urgent message along to the younger members of your family-friends network also.  During the installation of my pacemaker one of the nurses shared with me the story of the tragic passing of his 20-something, very healthy cousin in an accident.  Because he was a donor, his family was able to share various vital organs with 63 people.  That's 63 lives touched, enhanced, or saved!


Steve Lewis - Winding Road Cont'd

Dearest Family & Friends:
Big P.S. To my previous post, which described, in the briefest possible terms, the winding, bumpy, road of our last month.
Your sympathetic responses are appreciated, but … that's far from the whole picture. 
As you know, we are up to our eyeballs in renovating what we intend to be our new cold weather nest in Terravita, just a mile from Carefree, AZ.  When we took this on, barely two months after my lung transplant, besides warmer, healthier winters, we also intended a creative release from the often frustrating focus on my recovery.  In that we've been overwhelmingly successful. Finally past the demo phase, it's a ton of fun to begin to see our dreams and schemes turning into reality.  We thank God for this opportunity, and the new path it will lead to. 
Beyond that, last weekend we stretched our wings, and flew off to Sedona, where we spent two lovely days and nights "camping" in the absolute Ritz of RV parks, and sleeping, along with our faithful furry companion Ivy, in the back of our Tesla X.
After four months without leaving Maricopa County (multiple weekly visits to St. Joe's Hospital, and "exotic tours," in 110 degree heat, of every tile, plumbing fixture, and furniture consignment store in Phoenix), it was heaven to get away.
We miss you all every day, and still plan to spend much of September through December in Park City, renewing treasured relationships.
Love and Best Wishes,
Steve & Deb 


Steve Lewis - "It's a long, long road, with many a winding turn."

Dear Family & Friends
The title of this update is a lyric line from the song, "He Ain't Heavy" (He's My Brother) from my '60s childhood, by the Hollies.
The short and sweet story is that I continue to mend, and am bouncing back well from a bit of a set-back. We are also making good progress on renovation of our new little love nest in North Scottsdale, just two miles from Carefree, AZ.  Deb and I are having fun putting it together, and looking forward to warmer wintering for years to come.
In an ideal world we would have been released from close observation, and headed back to Park City by late July.  But this is transplant world, and "the road has many a winding turn." In late June a series of dominoes started to fall that pushed my recovery back by 4-6 weeks.  Briefly it went like this: accidental under-dose of anti-rejection med; followed by catch-up over-dose; sending my heart into arterial fibrillation (a high rate of very shallow beating), heart rhythm reset by  electric paddle-shock; and a 30-day course of medications. The med intended to prevent my heart from beating too fast worked so well that my resting heart rate eventually got down as low as 37 bpm, and I felt terrible. It was like having a progressively worsening flu, no energy, etc., for three weeks. Finally I passed out in a tile store, got to ride in an EMT truck, and (wahoo) was taken off that drug.
Now I'm back to 104% of "normal" lung function, and feel better every day!
We miss you all, and looking forward to return to PC in late August.  Steve & Deb


Feet Firmly Planted On Terravita-Firma!

Lung Transplant Update from Steve Lewis

Dear Friends & Family
Another very eventful month has passed, and I'm happy to report a dozen steps forward, and just one or two back.
The short and sweet is that I am making very good progress in my recovery.  My new lungs are doing great. I get a little stronger, and feel a little more like a "normal" resident of this beautiful planet every day. At my last Pulmonary Function Test I came in at 106% of expected lung capacity, a level not generally reached until six months after transplant.
That's a stark contrast to the year and a half I spent with ever shrinking lung capacity, and the knowledge that my time on terra-firma was fast expiring.
Then on April 11, the miracle of lung transplant, and the priceless gift of a future!
They are right when they counsel lung-transplant recipients that recovery will be a series of ebbs and flows; set-backs, as well as progress.  
The darkest part of my last three months was the installation of a feeding tube to protect my new lungs from aspiration. Try as I might, adjusting to taking in necessary nutrition without swallowing or tasting it, and the long-term possibility of foregoing the friendly joys of shared meals was beyond depressing.  Fortunately that lasted only one month. 
Thanks to the coaching and advocacy of an optimistic speech therapist, Carolyn Abraham, I was gradually allowed to consume food again. Last week, after more than two months of having a tube protruding from my stomach, they finally took it out!
I'm now fast approaching three months of breathing life-giving air without an oxygen tank following me around!  And Deb and I have returned to our normally optimistic view of life and our future. 
That optimism, and our unexpected enjoyment of the time we've spent at Fred and Emmy's place in the Terravita community of North Scottsdale, led us to consult a realtor.  Last week we closed on the purchase of the little love-shack of our recent dreams, very near the Marshall's winter home. By September, after completion of some renovations, our feet (and my new lungs) will be able to enjoy the kinder, gentler version of winter in Terravita, and Arizona sunshine. 
I still have an uphill battle to overcome the many bumps in this transplant recovery road (i.e. a bout with arterial fibrillation, caused by an imbalance of medications), and months of walking and biking to the gym to regain my strength.   
But, I now cherish April 11 -- the installation day of these new lungs -- as my re-birthday, with the hope and intention of celebrating that day many times in the years to come.
Some time in August we plan to return to Park City, and the dear friends and family who's prayers and support have meant so much throughout this process.
Much love to you all!
Steve and Deb


Steve Lewis - Getting 'Back In The Saddle'

Dear Friends and Family:
June 6th was a significant milestone in my recovery.  It marked eight weeks from New Lung Installation Day!  That gives sufficient time for broken bones, like my sternum, to heal and knit together.  Which means ... ta-da, … that I am now allowed to drive a car again!  (I had been relegated to riding in the back seat, with a pillow between my very tender chest and the seat belt, to eliminate the very remote but potentially devastating possibility of an airbag deployment, which could make a mess of my then fragile torso.)  Not that I haven't enjoyed having such a lovely and competent chauffer, but even she was getting weary of that role.

Tomorrow is another significant lung anniversary.  It marks two months since the day I was blessed with these new lungs.  I can't tell you how often, during painful or discouraging times, that I told myself to have faith.  I would gradually get better as I just concentrated on this eight-week/two-month journey.

Well it is happening!  We are still enjoying so much the privilege of staying at Fred and Emmy Marshall's winter home in North Scottsdale.  We love the neighborhood too.  I'm riding Fred's cruiser bike around the Terravita community for a few miles most days, ending at their really nice clubhouse gym. As I have said, transplant surgery isn't for the faint of heart.  It just melts muscles.  It could turn Arnold Schwarzenegger into a marshmallow.  So getting 'back in the saddle' refers both to the seat of Fred's bike, and just starting to get my strength back, one baby-step at a time.

Last week we learned that the next big step will be a month from now, when they perform a thorough evaluation of my condition, including a bronchoscopy, where they 'vacuum out' my lungs, to make sure I'm not aspirating at a damaging level, and take tissue samples to assure the health of the lungs.  So, by about July 15 we should know if any further 'procedures' are needed, or we are released to come home to Park City, with just monthly checkup visits for the next nine months. 

Perhaps the biggest news I have to report is that we have really fallen in love with the area, Terravita.  So much so that we will be closing on the purchase of a winter home here at the end of this month. We had absolutely no thought of doing this three months ago.  However, it is now clear that we need and want to have a long term relationship with St. Joseph's Lung Team.  We have also come to understand the many reasons people do that 'snow-bird' thing. 

So as I continue to recover, we will begin remodeling our little 'love shack' in North Scottsdale, very near Carefree, Arizona. 

Meanwhile, we continue to look forward longingly to returning to Park City, and the community that has given us such wonderful support over these last months.

God Bless you all.
Steve and Deb



Baby Steps Forward

Dear Friends and Family:
Brief update on how our health journey is going as of May 20: I feel a little better every day, and my doctors are generally really happy with my progress.  You are forgiven if that's all you need to know.
Rest of the Story:  (At the risk of providing too much information) ... It's now 39 days after transplant surgery, and I'm happy to report continuing progress.  Under the watchful care of the St. Joseph's Hospital Lung Transplant Team, and the raft of medications that prevent rejection and complications, my body continues to slowly, but resiliently heal.
By far the best recent news is that I was released to begin eating a diet of soft food about a week ago, under the direction of  Carolyn (my new best friend) a Speech Therapist I see twice a week.  She's coaching me to improve and strengthen my swallowing to avoid aspirating into my new lungs.  It's actually working a little too well.  Between continued tube feeding, and what I'm actually eating, I gained 8 pounds in just over a week.  So I've had to make a choice, eat less, or give up tube feeding.  Wahoo!  No tube feeding in the last 48 hours. Weight stable. Other bodily functions more normal, and no noticeable aspiration!   
Best of all, Deb and I can share meals again, after a month of hospital, then tube food!  Shared meals are the glue of human society.  I'm feeling much more human these days.
Meanwhile, back at the rest of my body, it is hard to overstate the impact of a transplant operation.  In the month after transplant I lost about 20 pounds of mostly muscle.  This, I'm told, is normal.  I'm now also seeing a wonderful Physical Therapist, Colette, twice weekly.  She weighs about 85 pounds, which includes her constant smile.  She's sharing her 35 years of experience in helping emaciated guys like me rebuild our haggard frames.  She's also helping me continue rehabilitating my back, which hasn't yet fully recovered from last April's lumbar fusion.  Slow progress every week.
You are right if you think that working toward recovery with transplanted lungs sounds like a full time job. I am so fortunate to have Deb's constant support, as my chauffeur (since I won't be released to drive for another 2 1/2 weeks), chef, fitness and medication coach, confidant, and shoulder to lean on.  
Beyond that, the support from Lung Transplant team at St. Joseph's Hospital is absolutely exceptional.  I could give many countless examples, but what really stands out is that everyone we deal with seems genuinely interested in making me well, and shows a personal interest in me.  Contrast that with a woman we met in St. Joe's X-ray waiting room who is now undergoing pre-transplant testing.  She had interviewed at both Stanford, and the University of San Francisco lung programs, where she felt like she was treated like a beggar at the palace gate by staff she described as arrogant and cold.
We are very blessed to be here.
I continue to be blown away by the cards and messages from caring friends that still arrive almost daily.  Needless to say, this is a trying process for both of us.  We have discouraging moments and down days.  Your loving care and support always raises our spirits.  
Of course, we were deeply saddened at the loss of Gil Miller, and Ralph Gates from our community of special friends.  Their passing leaves a void that memories will never fully fill.  They lived as we must aspire to live.
We hope and trust that all continues to be well with you back in Park City, and wherever you are, or travel.  We miss you, and look forward to our return, which is still likely sometime in July.
Meanwhile, we do pretty well at ignoring the churning mess in Washington DC, and are staying focused on our job, which is to enjoy each day as much as we can.
All the best to you, our dear friends.
Steve & Deb