Day # 4

Day #4 in the hospital.  My room is my cocoon, here it is dark, cool and comforting.  Outside I hear the muffled hustle and bustle of the staff.  Every once in a while I hear a bed alarm going off from down the hall.  "She'll be coming round the mountain" bursts out.  Seems odd that they play that song for a patient who is not allowed out of bed.

There is a bowl of grapes beside me.  The antibiotics gives me a metallic taste in my mouth.  I eat out of necessity not out of want.  Soon I will get out of bed and do my exercise routine.  I use coke cans as weights for my upper body strength.  I use resistant bands for lower body.  Then I will walk, round and round and round the floor.

I am reminded that walking is really all I need to do in life.  I don't have to run.  Life is not a race to be won. I can set my own pace,  one foot in front of the other, one step at a time.

The Quest for Balance

I am back in Tennessee, back in the hospital.  This past week has been extremely stressful.

Last Thursday I traveled  to Nashville to Vanderbilt hospital.  I wanted to compare another transplant center to Duke and I wanted a second opinion.  The were in agreement with Duke's assessment.  The window is not open, it's too early for transplant.

That's the good news, the more challenging news is I must stay committed to the exercise/wellness routine that has been presented to me.   I don't know how to do this.  In Durham at the Center for Living it was easy.  The routine was established,  there were many people struggling with health problems so a natural comaraderie existed which was very encouraging.  I was one of many on oxygen so I didn't stand out, I felt normal.

Now I am returning to a world where I feel alone in the struggle.  Yes, I am fortunate to have many supportive people around me.  I am grateful to my friends and family who are encouraging to me but unless you have struggled with a chronic disease then it's hard to understand the weariness, the burden, the loss, the sense of isolation that goes with declining health.

I feel uncertain that I can predict how my life will be lived out. There are too many balls juggling in the air right now to think about the big picture.  The quest for balance continues.

For Today-

The world breaks everyone, and afterward, some are strong at the broken places

- Ernest Hemingway

 “My grace is sufficient for you, for my power is made perfect in weakness.”  2 Corinthians 12:9

Hmmmm......

“If you can dream it, you can do it. Always remember that this whole thing was started with a dream and a mouse.” 
― Walt Disney Company

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.