reporting in . on somers point via santa monica . gusting, high winds of the medical variety . holding steady

                                                

     Since returning from Pittsburgh a month ago on February 16, and since coming home from Johns Hopkins 10 days ago on March 10, Colleen has been fully engaged in reaching the goals set for her by Pittsburgh's Lung Transplant Committee--with Dr. Mathai & Dr. McDyer having her back, so to speak.

     To put it more graphically, my opinion as a manual transmission driver is that Colleen has shifted from 1st to 4th gear without the luxury of stops in between.

     There's a deadline now. Or a "kinda" deadline, since nothing's exact in this arena of infinite variables.

     May 13.

     This is the date of Colleen's next scheduled visit to the University of Pittsburgh Medical Center. Pittsburgh requires all of its lung transplant candidates--even deferred lung transplant candidates like Colleen--to have a very specific series of tests done every three months. No exceptions. And these tests have to be done in Pittsburgh. No exceptions. 

     Colleen's first 3-month checkup is now scheduled for May 13. And, thus, has become her personal deadline for reaching the goals necessary to be put on the transplant list. The Lung Transplant Committee believes that Colleen has a "small window" in which to get a new pair of lungs. Colleen and all of us heard that message loud and clear.

     So, with all that in mind, the following To-Do list might give you an idea of what daily life at 10 Village Drive is like for Colleen at the moment: 

   Put forth the effort to gain weight: do your   
   best, in spite of how difficult it is, to eat 600 
   extra calories a day, in addition to giving myself
   supplemental liquid nutrition at night through 
   NutriNellie; keep NutriNellie clean 
  
   Make sure to get between 50-60 grams of protein a 
   day.

   Put forth the effort to gain strength, especially 
   in the legs, the breathing muscles, and aerobic
   endurance: a Physical Therapist comes to the house
   2 times a week, an Occupational Therapist 2 times 
   a week; Colleen is doing as much indoor walking as
   she can manage. The specific goal here is to be 
   able to walk 400 feet in 6 minutes.

   Put forth the effort to stay in good, regular 
   communication both with Johns Hopkins and with 
   Pittsburgh.

   Be sure to do all required testing, which means 
   making and keeping all necessary doctor 
   appointments, including Colleen going back to 
   Baltimore the week after next to see her primary 
   scleroderma physician, Dr. Wigley. She hasn't seen
   the beloved Dr. Wigley since before going to 
   Pittsburgh. So I'm sure he's eager to see her 
   after all that's transpired since then.

   Welcome the RN, who now comes a few days a week,
   and also Mickey, a friend and home-health aide, 
   who comes for a few hours one or two times a week.
  
   Welcome visitors. Take phone calls.

   Get dressed, shower, wash hair, prepare meals, 
   drink water, manage groceries, manage oxygen 
   supplies and equipment, tend to nose rendered 
   quite vulnerable due to 24/7 oxygen canula, manage
   clean clothes,count pennies, manage sanity and, oh
   yeah, rest. 

   Aim for personal bests.

   Prepare to move to Pittsburgh at a moment's 
   notice.

And that's not all of the iceberg.

Do you think this is a full-time job? Do you think
this is a job for the faint-of-heart? Do you think
even a person with fully operational lungs would 
have the mettle to take this on?

Questions to ponder.


Reminder to all, including myself:  resist the temptation to talk too long on the phone with Colleen. To those who visit: know that, for right now, a short stay is far better for her than a long one. Suggestions only.


PS:  We checked in by phone today with Judy and Ed, whom we met at Family House in Pittsburgh. After being there since before Christmas for Ed's single-lung transplant surgery, they just returned home to New York yesterday. Ed is doing great and no longer psychologically attached to the oxygen canula. Hooray. I asked about the others we'd come to know well at Family House. They're all home now too.