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
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