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
 
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