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
Do you appreciate staying connected to Steve like this?

A $30 donation powers a site like Steve's for one month. Help keep CaringBridge online for them and for you.

SVG_Icons_Back_To_Top
Top