Journal

Journal entry by Deborah Lewis

(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.

 
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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!

Journal entry by Steve Lewis

8/5/18
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 

Journal entry by Steve Lewis

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

Journal entry by Steve Lewis

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

Journal entry by Steve Lewis

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

 

Journal entry by Steve Lewis

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

Journal entry by Steve Lewis

Good Day to you all, my Dear Family and Friends:
Tomorrow ​(Wednesday, May 9) ​marks four weeks since the landmark day of my successful double-lung transplant​ on ​April 11. If you are seeing this, you ​may ​have had the opportunity to read the whole story as posted on Caring-Bridge by ​my amazing, faithful, beautiful, smart and determined wife/support staff.
 
This is not a journey for the faint of heart.  I'm so very fortunate in dozens of ways, first and foremost in my partner on this path, to have made it this far.  
 
Second, we made a great choice in St. Joseph's Lung Transplant Team.  Without their amazing ability to match me with new lungs within a week of acceptance onto their approved list, I would likely be headed for hospice, declining too fast to tolerate the surgery by now.  I've seen an actual picture of my old vs. new lungs, taken during the surgery.  The new ones are a 'beautiful' (according to the surgeon) creamy white.  While my old left lung had turned salmon pink, and the right one was literally toasted black and shriveling.  I was do​wn to about 30% of my lung capacity, and declining fast.
 
The first two weeks were really tough in many ways, but their pain management was excellent.
 
We are very happy to be in Phoenix, under the intense care of the Lung Transplant Team at St. Joseph's Hospital for at least two more months.  They are doing an amazing job.  Totally focused on anticipating problems, and heading them off before they interfere with the progress of my recovery.
 
It's probably no surprise to those that know me well, that the only serious hic​cup so far is that I have a screw loose.  Actually, more than one.  There is one in my throat too, a result of cervical surgery 18 years ago.  It has backed out into my throat about 1/4 inch, resulting in a pre-existing propensity to aspirate.  It alters the geography of my throat, breaking the seal that should be made by my esophagus when I swallow.  It definitely contributed to the unusually rapid deterioration of my lungs, once Pulmonary Fibrosis got going.
 
Aspiration is the fourth leading cause of premature death for lung transplant recipients.  So, two weeks ago, to protect my fresh, new lungs, I was put on a feeding tube for my nourishment and hydration, as well as it now being the portal for all of my medications.
 
That all sounds good in theory, and it is absolutely necessary to protect what Deb so aptly calls my "new white​, fluffy​ lamb" of lungs.  And I put on my 'happy to be alive face' every morning.  But I have to confess that not being able to eat or drink anything (except ice chips) is already driving me a little coo-coo inside.  Thank God, there's hope that this can be corrected.  We are consulting with a ​speech ​therapist now, with another test coming on Thursday morning, and we are pursuing an appointment with a neuro-surgeon about the prospect of correcting the my "loose-screw."  I'm even open to some sort of plastic surgery on my throat. 
 
I went to the gym for the first time today for an hour of 'soft exercises.'  I've been walking a mile or more every day for most of the past three weeks, with no oxygen tank support since 48 hours after the transplant.  It is truly amazing. 
 
As wonderful as my new lungs are, and they truly are, the thought of never eating again is one I really can't handle at this point.  I thank God that there is hope for a correction of this problem.
 
And I thank all of you so much for your interest, support, prayers, friendship, and love.  It helped so much to keep me going, and it still does. 
 
I am a far richer man than I ever knew.
God Bless you.
 
Hope this isn't way too much information.
 
We are happy to be in our new home in North Scottsdale.  Some have asked about our new  address:  6894 East Thirsty Cactus Lane, Scottsdale, AZ  85266
 

Journal entry by Deborah Lewis

Greetings All:
I have a short story and a long story.

THE SHORT STORY:  Steve is back in the hospital as of Sunday.  Because he is showing that food and liquid aspiration is a problem that is affecting his new lungs, he has had a feeding tube inserted in his abdomen.  He will have the feeding tube in for at least four months until they can figure out next steps that may involve additional surgery to correct his problem.  If surgery is recommended, then it can be done at about three months, we're told.  He should be discharged Thursday.

THE LONG STORY:  No one said that this would be easy.  Steve was admitted back in the hospital on Sunday morning after a great Saturday but rough Sunday start.  He has long had problems with aspiration -- food and liquids going down the wrong pipe, and in the past, Steve went to a speech therapist to learn ways to deal with food/liquids so that he wouldn't aspirate.  One of the tools is good coughing to expel stuff from the windpipe.  Anyway, on Sunday, one of his pills got stuck in his windpipe and after lots of coughing it came up along with some colorful phlegm.  (I hope this isn't too much information.  I'm trying to be thorough enough, though, so you don't have to scratch your head wondering what's going on.)  The backstory on his aspiration problems is that 20 years ago Steve had surgery on his cervical spine that involved a plate and screws.  The surgery was performed by going through the front of his neck.  One of the screws eventually backed out and presses on his esophagus, and Steve's experience is that what he's trying to consume gets hung up there.  After this episode with the pill, Steve got despondent and unresponsive to my questions about how he's doing.  He seemed confused enough that I decided to call his coordinator about the coughing, phlegm and despondency/confusion.  She told me to take him to ER.

Once at the hospital, Steve showed additional signs of confusion to the doctor team that came to check him out.  He couldn't answer questions or follow easy commands.  He used nonsensical "word salads" to answer -- real words that were strung together to make zero sense.  So, they thought that maybe he was having a stroke or seizure.  (Never mind the aspiration and phlegm part yet).  He had a CAT scan and MRI and then they hooked him up to a 24-hour EEG and moved him to a regular room in the hospital.

In the end, after analyzing the data, the neuro team determined that he had not had a stroke.  The results are inconclusive but they offered three possibilities.  One is that he had a mild seizure.  They found a tiny abnormality on the MRI in the speech part of the brain.  The tiny spot isn't something that they would normally have any concerns about.  It may just be a coincidence.  But to be safe, they're giving us a medication so that if the symptoms come back, he can take this under his tongue to bring him back to normal while we get him to the hospital to treat for long term, anti-seizure maintenance.  The second possibility is that he aspirated a pill or pills that actually cut circulation to the brain and eventually caused these symptoms.  The third possibility is called "metabolic encephalopathy" and means that he had a probable reaction to his new medications.  Now, three days after that episode, Steve's best description of how it all seemed from his angle was that he, "...was experiencing a half awake dream."  Steve also thinks that the anxiety and stress he felt about the transplant on top of his aspiration was a big part of the problem.  End of that story, for now.  Next is this aspiration problem.

On Monday a team from speech therapy came in to conduct a different swallow test than others that Steve has had in the past.  (It does make me wonder why they had not ever done this test since he has had swallow tests in Utah and here in Arizona, AND this test was so illuminating and non-invasive).  A camera and flexible tube was sent down Steve's nose (local anesthetic only) and the camera slid up and down the throat area to check out his swallow action while he consumed crackers, apple sauce and milk all dyed bright blue with food coloring so that we could watch the TV screen and follow the food/liquid.  He took sips, gulps, and said "AWW" and other swallowing styles to see how everything functioned.  It was fascinating.  In the end, it was shown that the flap (epiglottis) that closes and seals off the windpipe when we swallow was not able to create a tight seal because of (you guessed it) the screw in his neck prevents a tight seal and allows seepage into the windpipe.  Normally coughing can expel most if not all of the seepage.  But, in Steve's case there was also one small area where a tiny bit of liquid pooled and should have elicited a cough reflex but didn't.  

The speech team in consultation with the transplant team decided he had to have the feeding tube.  His new lungs are getting stressed because of the aspiration.  (No mystery here.  Steve has long held that he was still aspirating despite therapies and that it contributed to the swift decline of his former lungs.)  When consulting with one of the transplant doctors at St. Joseph's back in February of this year, he told us that because of possible aspiration problems, Steve might have to have a feeding tube.  But, Steve passed all the swallow testing enough to not sound any warning bells -- at least until this new test was performed on Monday.  

He will have the feeding tube in for at least four months until they can figure out next steps that may involve additional surgery to correct his problem.  If surgery is recommended, then it can be done at about three months, we're told.  Sometime in the next month or two we will probably see a neuro and/or orthopedic surgeon about fixing the screw problem.  He should be discharged Thursday.

As all of this aspiration drama was unfolding, I had a vision.  I visualized Steve's new lungs as a white, fluffy little lamb that just got placed into a lions den.  I love lions, especially this host "lion," but lions and lambs don't usually play well together and it's our job/Steve's job to help the lion and lamb lay down together peacefully.  We want the lamb to grow and thrive.

Love and Gratitude,
Deb

P.S.  Now we hope that the only drama today is the JAZZ beating the OKC THUNDER in game 5 in OKC.  Also (not to make light of this but)...Hey...Now I don't have to ask him what he wants for dinner.  I'm on my own!

P.P.S.  I realize that I said nothing about how Steve is feeling mentally and physically and that's because he is doing so incredibly well in both arenas that it's just not top-of-mind.  His pain is well-managed and minimal.  The new incision for the feeding tube is sore...to be expected.  Mentally, he is now passing all of his cognitive tests 100% and he's sleeping well enough at about six hours a night.  He is in good spirits...joking with staff...getting back to his mile plus rounds on the 7th floor and so on.  Our kids (including nephew Matt) have been calling daily along with granddaughter Ella Jo, which are high points in his day.  He is also repeating over and over to me and to hospital staff that he is looking forward "...to the best times of my life."  I'm on board with that! :)

Journal entry by Deborah Lewis

Dear Friends and Family:

Eight days after surgery, Steve came home to our little apartment across the street from St. Joseph's Hospital!  It seems like every day that he was in the hospital he lost yet one more tether or tube or lead that was connected to his body.  He lost his last chest drainage tube today (Thursday).  My mental picture is of the shuttle launch at Cape Canaveral where before blast off, all the tethers are disconnected (seemingly) one at a time.  So, today was Steve's "blast off" into chapter 3 of this health adventure. 

Once home, he and I immediately set to work (oh wait...first we poured a glass of champagne) sorting his ridiculous set of meds that he will be taking for the rest of his life (see picture).  We thought it might be an evening of dinner and a movie and some puppy love from Ivy.  But the pill sorting effort took over.  Tomorrow, Steve has his first "clinic" where they measure the main med for organ rejection.  His meds kind of run into three categories.  First, is the set of meds that prevent organ rejection.  I've named these meds"Tach" "Mike" and "Pred," which are easy ways of referring to them.  Pred is Prednisone, etc.  Then, he has a set of meds that are anti-infection drugs -- Anti-viral, anti-bacterial, etc.  Finally, there are drugs to counteract the negative effects of the first two sets of meds.  AND, because he is on all this stuff, he runs a high risk of having diabetes.  So, we have to test his blood sugar regularly, and he has to have insulin injections if needed.  We went home with about 30 pounds of drugs and testing materials that will get Steve through the first month.  The drugs will be modified as time goes on.  PHEW!  He will be going to the hospital for testing and therapy about four times a week for a couple of weeks and then it tapers down from there until after three months he will be going about once a month.  That's when we can come home to Park City and Steve (and I?) can come back to Phoenix for testing.  After one year, care can transfer to the U of U.  This stuff isn't for sissies, but it beats the alternative.  Steve is elated to be breathing like a young man again without a quivering voice and constant cough and without a constant connection to an oxygen device and canula.  He has been emotional partly because of the general anesthetic wearing off, but mostly because it seems so incredible.  Today, after discharge, he had a minor panic attack to be out on his own without an oxygen tank.  He's still building trust in his new set of lungs.  (The donor piece is a whole other part of the story for maybe another time.  We only know that the donor was a young male.)

So, today was a launch into a new phase of this health journey that will have it's own set of management challenges.  Steve has to be diligent about food safety.  There are some eating "do's" and "don'ts".  He has to do everything possible to avoid infection including wearing a face mask frequently.  He has to be careful in the sun as skin cancer has a way of attacking transplant patients with a vengence.  And so on.  

Thank you all for all the cards, tributes, gifts, calls, visits and well-wishes and prayers!  We feel the love and support and it means more than you may ever know.  We are bursting with gratitude.

Love,
Deb & Steve

Journal entry by Deborah Lewis

Greetings Transplant Supporters!
Yesterday was the big day -- the day that Steve received a pair of donor lungs known as a "double lung transplant."  He is now in ICU heavily sedated and with "good numbers"  coming from the myriad of monitors measuring everything (except what's traversing through his mind).

His surgeons were smiling after a textbook transplant that was free of any complications.  Today, the team will wean him off enough sedation that he'll open his eyes.  He will hopefully get the vent tube removed so he can talk.  Right now he can nod his head and squeeze our hands.  The goal, as written on the white board, is to control pain, complete a set of labs, wean meds and turn his body every two hours.

I'm grateful that daughter Alison flew out here while Steve was in surgery and did the bulk of the waiting with me at the hospital.  It's been an exciting and exhausting journey and we really are buoyed by the love and support pouring in from family and friends.  THANK YOU!

P.S.  I downloaded a photo of the x-ray showing the old lung on the right and the donor lung after implant on the left.
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


ON APRIL 30TH WE'LL MOVE TO:
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.



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