Lungs 2012

The call from Duke came about 11 on Friday, 1/20/12, as I straddled the edge of the treadmill at Winter Park Hospital Cardio-pulmonary rehab about to hit start button and step on for a mountain climbing twenty minutes. 

“It’s Khara at Duke.  Good News!  Everything checked out fine last week.  We want you to relocate in Durham as soon as possible--in two to four weeks.” My legs turned rubbery.  It’s sooner than I wanted to leave Florida, but not unexpected.  “Let us know when you arrive and where you’re staying so that we can set up more tests.”  Breathless even sitting with my oxygen turned up, I felt the room and its shiny machinery swirling around me.  This is what I’d hoped, and now it terrified me. 

“What if I can’t be there that soon?” I asked.  “Could I come in six weeks?” Doris has at least six weeks of work scheduled in NM after her sixteen days with me in FL. Can Lisa drop everything in her busy life so soon to spend two weeks or more with her mom until Doris joins me in Durham sometime in March?

“We need you to be as strong as possible going into transplant,” says Khara.  That means a minimum of twenty three sessions in our Center for Living.”  I know that.  It will take five or six weeks of five day a week sessions four hours a day from arrival in Durham to be listed.  “We don’t want you to become so sick that you can’t survive surgery.  Pulmonary fibrosis is tricky.  You can plateau for months and then fall off a cliff. We have to be ready for that.”  That reality scares me on a daily basis.

I know how difficult getting enough oxygen has become lately.  For 1.8 mph on the treadmill I need 10-12 liters continuous flow and sometimes 15 (highest it goes).  I need 8-10 to walk to the car or into a restaurant with someone carrying my heavy tank or pushing it myself on my rollator. To get the rollator out of my Jeep, fold it out, and do it in reverse when I’m leaving, I need a helper.  For Duke Doris and Lisa are my primary and secondary caregivers.  But anyone strong enough can swing my tanks and wheels around.

Several have asked, “When is your transplant scheduled?”  Nobody knows when a lung donor will die just when I’m at the top of the lung recipient list with a lung that fits me (small size, A negative blood).  “You top the list,” as Dr Fernandez at National Jewish Health put it, “when you’re the next to . . . [hand gesture: palm up and then down].”  I won’t know I top the list until I get the call.

When I’m close to top of the list (lungs fading out but the rest of my body-mind-spirit hearty from workouts), I get a beeper to tell us when there's a lung for me.

We had to make some quick decisions on Friday before Doris flew home on Saturday morning.  Lisa has agreed to move me to NC mid-February.  We’ll take a minimum of files, books, clothes that we need for 3 to 6 months in a furnished apartment.  Before and after my tests 1/9-13, Doris and I visited four complexes that cater to medical patients near Duke Hospital.  We like Kim’s suggestion, The Forest, less than a mile to exercise and three to Duke Clinic and Hospital.

Next time I’ll give more information on departures and arrivals and my heavy social calendar for the next two weeks leading to my birthday.  Let me know if this has too much detail for you.  Tell me your news.