Steve’s Story

Site created on April 2, 2018

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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 Steve Lewis

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!
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