Steve’s Story

Site created on April 2, 2018

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.  

Summary of my losing battle with IPF -- Idiopathic Pulmonary Fibrosis   

Less than a year and a half ago I was diagnosed with Idiopathic Pulmonary Fibrosis, an incurable disease that gradually calcifies the microscopic air sacs where gas exchange happens in the lungs, rendering them incapable of cleansing the blood of carbon dioxide, and exchanging it for the fresh oxygen required for muscle function, repair of damaged tissues etc.  An X-ray of my lungs looks like they’re filling with spider webs from the bottom up. 

About 40,000 new cases of IPF occur every year in the US.  IPF progresses at various rates, sometimes it takes 5-10 years to ruin its victim’s lungs.  Sometimes it works much faster, as in my case.  When I was diagnosed in October of 2016, I had already lost 40% of my lung capacity.  My lung capacity now is in the range of 30% of normal, and I am dependent on a constant supply of supplemental oxygen to function.  Upon careful consideration of my future, the option of gradual suffocation appears particularly unappealing.  The only other possibility -- lung transplant -- seems an easy choice until you think through the process (i.e. you get cut nearly in half, then trade formerly trusty, but dying lungs for a new pair that your body will spend the rest of its life trying to kill).  Not for the faint of heart, but it didn’t take long for me to come around.  A lung transplant now sounds like my idea of a good time!   

Fortunately, over the last 20 years, lung transplantation has become a routine procedure, with over 1,200 successfully performed in the US each year.  After researching a dozen options on-line, one of the most active lung transplant hospitals in the country turned out to be St. Joseph’s Medical Center in Phoenix.  The University of Utah’s program is also highly respected.  So, in late December, when my pulmonologist told Deb and me that my ‘fast-tracking’ IPF needed a transplant asap, we began pursuing both the UofU and St. Joe’s vigorously.  St. Joe’s rose to the top because of its high volume and their astoundingly short wait time, less than 30 days for 80% of their accepted patients, as compared to 3-6 months at the UofU.  

After the holidays, we made appointments for pre-transplant interviews and testing at both facilities as soon as possible.  

Fast-forward through flying to Phoenix in early February, and a week of intense testing at the UofU (results got transferred to St. Joe’s).  By mid-February it became clear that fighting for breath in the cold and snowy loveliness of our 6,400 ft. mountain home at Jeremy Ranch was too much stress for my heart, and the rest of me too.  When the first round of testing was completed at the UofU on March 3rd.  We packed up the essentials, including our too-cute puppy girl Ivy, and headed south.  (Our other dog, Andy, is in the tender, loving care of our daughter Alison and her big puppy, Hanu, in Salt Lake City.)

It took just minutes of our first week in Phoenix to settle into the 800 square feet of our frill-free, two-door (not Tudor), as it has just two doors - entry and bathroom. mini-pad/holding cell.

After 10 days of warmth, sunshine, and poking around Phoenix, March 19 started a my final run of testing. Feedback from what, in sum, is certainly the best physical I never wanted to have, dashed all illusions that failing lungs were my only imperfections.  

The really great news is ... they want me anyway!!! 

On Good Friday, March 30, I got the call we'd been hoping for since before Christmas.  I made the final cut!! I will be on their transplant roster as a receiver, not the water-boy, by the first week of April.

And, oh by the way, just a few more tests.  April 3, I visit the transplant tailor shop to get fitted for my new pair of custom lungs. They also need another 1/2 pint of blood for infectious disease testing. After an appointment with a cardiac surgeon I could get the "call to install" at any time.

The plan is for the heart surgeon to patch an ASD (Arterial Septal Defect) while they are transplanting the lungs. (An ASD is a small hole between the right and left sides of the heart, partially covered by loose flap of the heart wall. 25% of us have an ASD and never know it, but it's highly unfashionable in the transplant world.)

We thank you all for the great support, kindness, and the much needed help that has been pouring our way since we began this process.  The hardest part of moving to Phoenix is the distance it puts between us and many of our dear friends and family, though we are very fortunate to have a several good friends and family who have made us feel very welcome here in the Phoenix area.  We eagerly anticipate hearing from, and seeing many of you while we are here.  Our new address is:

       Steve & Deborah Lewis

        535 West Thomas Road, unit #303 

        Phoenix, AZ 85013

6894  East Thirsty Cactus Lane
Scottsdale, AZ  85266

Of course, we will send updated information as things progress toward, and beyond that "call to install." 
If you’re thinking of visiting before the surgery, we welcome that, and should be free until sometime in mid-April (just guessing).

After transplant we’ve been advised that one or two helpers at a time will be very useful, and much appreciated, with the understanding that I will be completely flattened for the first two weeks or more, and Deb will be 100% focused on my care.  We both will need help and support in a carefully coordinated way.  She will not be able to ‘entertain’ visitors, nor be responsible for their lodging or transportation.  It will also be essential after transplant for me to avoid exposure to any infections.  

We look forward to hearing from you, and coordinating visits through Deb.

Newest Update

Journal entry by Deborah Lewis

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 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!

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