Thursday, March 15, 2012

Blown mind update...

Last post I was finishing up my eval at Duke.  The whole process took a lot out of me, physically and mentally.  I'm finally focused enough to sit down and write about what's happened next.

Rheid and I spent the next day, Saturday, checking out possible housing.  We saw apartments and extended-stay hotel rooms.  They were all expensive and each had positives and negatives.  We did stop at Residence Inn and met a nice couple who invited us back that evening to meet the "lung group" who were getting together for dinner.  We got to know 6 of the 10 couples living at that facility who were around for the weekend.  I can see how being around others sharing a common experience could be helpful.  We are still trying to figure out the best place for us.

We flew home early Sunday morning.  Got to experience another TSA pat down and was tested for explosive residue.  As I stood spread-eagle, a cute teenager looked at me incredulously and shook her head.  Our telepathic communication:  "Unbelievable!  Targeting little old people who can't breathe."  "Yeah, I agree...well, except for the 'little old' part."

Monday was the beginning of the waiting game.  We were told several times that the transplant committee meets together on Tuesday mornings and you are notified of their decision on Thursday or Friday.  So as I was getting my day started on Tuesday, I kept wondering about what the committee was saying about me.  It was just after 12:30 when the phone rang and it was Duke.  I figured they must need some kind of info from me before they could proceed.  Man, was I surprised when Sandra, a pre-transplant coordinator, said the committee had reviewed my case and felt like I was within my transplant window.  They would like me to relocate to Duke within the next two months.  While I'm still trying to process what's happening, she continues to say that I need one additional test, an endoscopy, before I am completely cleared to come.  She said I could do it locally and have the test results faxed back to them.

To say that this news was a shock is a vast understatement.  I truly felt I was being evaluated too soon and their decision would reflect that fact.  But not so.  I was prepared for them to tell me that they would follow me and reevaluate the situation in 3-6 months.  My hope was to stretch that 3-6 months into years, if possible.    I've just never pictured myself in this place--needing a transplant.  My mind is struggling to accept the facts.  I hope it gets easier with more time because my anxiety level has increased to where it hasn't been for years.

I was also reminded by Sandra to sign up for pulmonary rehab here locally.  Well, I've been trying to do that for the last week with limited success.  When someone finally got back to me, it was a bit comical.  The therapist asked me a couple of preliminary questions and then proceeded to ask this:  "When is your lung transplant scheduled?"  Yikes, this did not inspire confidence!  I should have answered "only heaven knows," since no one on this earth is privy to this information.  Pulmonary rehab starts on Monday...wish me luck, I think I'm gonna need it.

Tomorrow morning at 7:00 a.m. I need to be in Denver for my endoscopy.  I made sure that sedation is included for this one.  Lucky me will get to sleep through it, thank goodness.

I am so thankful for faith, family and friends.  I am truly blessed.

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