Stumbling along

Yesterday I sat in the surgical waiting room at Duke hospital.  Stressed out families were littered about like salt spilled on an icy sidewalk.  Each filled with nervous tension, awaiting for word from the doctor.  I was keeping Cindy company until her family arrived.  Her son, my friend from pulmonary rehab, Travis was receiving his new lungs

Travis is breathing on a respirator this morning in ICU.  The recovery process has begun.  Three of my friends from pulmonary rehab were given new lungs in the last week.  I am so happy for all of them.

I was caught off guard by the tidal wave of despair that hit me when I came home last night; so much disappointment.  In the quiet seclusion of my room I was flooded with tears of desperation.   My journey here is almost done.  I am to go home with instructions of keeping up the regime I've been adhering to here- nearly 3 hours of exercise a day.  How anticlimactic.  I feel set up to fail.

My life has been turned upside down, being sick will do that to you. There is no end in sight so I am blindly stumbling along, having lost my equilibrium a long time ago.  One foot in front of the other, not sure where I am going just trying to keep going.

What's Next?

“You are never too old to set another goal or to dream a new dream.” 
― C.S. Lewis

Staying in the Struggle.

Last Sunday I was pondering the benefits and risks of receiving a double lung transplant.  The up side - if things went well -  was the ability to breath, with out thinking about it.  Swimming, biking, hiking, the possibilities were endless, who knew what all I would do with a new set of organs.  I had BIG plans- Walking AND talking AT the same time; Washing my hair while STANDING in the shower; I was to become a diva of domestic duties- I would clean AND cook, surprising all around me with my amazing new stamina.  Maybe, just maybe I would eventually return to my career,  a job that I dearly loved and missed. I had so many plans mixed with a few dreams of my life to come.  I had hoped.....

Hope is what gets us through the hard things of life,  Hope that tomorrow will be different.  Hope that life will change.  Hope is what makes the risks of transplant manageable.  The many side effects of steroids, - chipmunk cheeks, acne, swinging emotions, extreme hunger to name a few;   The dangers of the immunosuppressant drugs- infection and rejection; the high mortality rate - 50% of double lung transplant patients die within 5 years.  HOPE is what give you courage to face the trials of life.

I have spent a tremendous amount of energy psyching up for the incredible possibilities of transplant then came the news that it was not to be; Transplant is to be postponed.  I find myself unsure of what to hope for now.  I am physically better then I was a month ago when I started pulmonary rehab.  After weeks of intense exercise I am healthier.  But I am not healthy enough to do what I would like to do.  There will be no swimming, biking or hiking for me any time soon.  I am not healthy enough to become a domestic diva.  (I was ambivalent about that dream anyway).   I am not healthy enough to return to work.  I am not healthy enough to live without oxygen.

I am healthy enough to stay in the struggle; the struggle to manage my time so I can do all my nebulizers, receive chest physiotherapy, exercise on a daily basis and have time and energy left over for relationships.  I am needed by my family.  I want to richly and  freely contribute to their  lives and others.  I know the purpose of postponing transplant  is to keep me alive for as long as possible.   I trust and agree with the doctors' decision.  I want to live for as long as possible.

 I am in the process of  adjusting to a new life style;  progress does not come easily. I have to figure out how to do all that I can while being satisfied with not being able to do all that I had  hoped to do.  I have to revise my dreams and  learn to hope again. The temptation to avoid disappointment by avoiding my dreams is strong.  However, without the hope for more then the day to day struggles then life becomes overwhelming. 

For now I am lost in the muddle of the middle, finding my way, committed to staying in the struggle.  For today, that's the best I can hope for, and for today, it is enough.  There's always tomorrow.

Emotional Whiplash

I had hoped.........
      someday soon I would  breath easy,  I would walk without being winded, I would laugh without coughing.  I had hoped to ride bikes with my children, to sleep without being tangled in an oxygen line.  I had hoped for more then what I have.  Hope is dangerous, it lays open the heart to deep disappointment.

I had a meeting with Dr. Reynolds this morning.  This was the first time that I have seen him since he told me that I had reached the transplant window, that was nearly 3 months ago. Since then I have been working to accept that my fate had been sealed, it was time.  I have listened to every request the transplant team has presented to me.  I have relocated my whole family; completed every test, jumped through every hoop and now this....

Wait.  It's not time yet.  I'm better, not as good as I had hoped for but better then I was.  Can I be satisfied with this - tied to an oxygen machine, waiting to get sicker, the threat and promise of transplant continuously looming on the horizon?  Can I wait in peace knowing my time will come, that time on this side of transplant is a familiar battle, a fight that I can keep up for a while longer, a gift to be cherished?

Time will tell.