A New Challenge

I went to Duke transplant center for a check up this week.  First time I had been there since July of last year.  I'm supposed to go every 3-6 months but kept postponing appointments for various reasons.  My lungs seem stable despite the need for oxygen.  They would like to see my again in 3 months and they are concerned about a new condition I have developed:  I am fat.

I would not qualify for a transplant today due to the fact that I am overweight.  There seems to be a great correlation between successful transplant and healthy body mass index.  So the challenge is to lose 20 pounds in the next 3 months.

Food is my drug of choice.  I like the taste, textures and distraction of food.  I eat for pleasure and to avoid pain.  A cold pepsi perks me up, a big mac brings me a feeling of being satisfied for a fleeting moment.  This has not been a problem until now.

I have justified my eating habits by blaming steroids; Nothing like some prednisone  to create a bottom less pit in your stomach.  I have also blamed the antibiotics I am constantly taking, they leave a horrible taste in my mouth that must be covered by continuous consumption of sweets.  I am a stress eater and respond to life being out of control by controlling what I can, namely what goes into my body.  I love food.

So now the struggle for discipline begins.  I know I can do it, part of me really wants to.  Yet there is another part of me that is tired- tired of struggling, tired of the continuous challenge of doing the "right" thing, tired of trying.  I wonder which part of me will direct my future.

Winter is over.

Sometimes I cannot write about my hospital experiences as I go through them.  Writing is a way to connect with my emotions and express myself.  Sometimes I choose not to embrace what I'm feeling. Sometimes it is better for me to keep my feelings at bay so I do not write.

I came home from the hospital today.  I have spent 54 days at UT medical center this year, beginning January 21.  I was released twice only to return again. The dates are a blur to me. The first time I came home was after 3 weeks of antibiotics.  I responded well and felt better then when I was admitted but still not great.  Soon after being home  I started running a fever, I returned to UT two days later.  A few more weeks of antibiotics and I was released to come home on Saturday, March 8th.

 I remember the date because it was important to me to be home for my son's 14th birthday which was on the 10th.  Unfortunately I was home for less then 24 hours.  I had a fever through out the night  and my family tells me I was  restless in my sleep, holding random conversations that were full of angst and irritation.

 I awoke the next morning feeling hopeless and full of despair.  Morbid thoughts plagued my mind.  I felt defeated;  all my coping mechanisms were gone. I was anxious beyond anything I have ever felt before.  The fight for my well being had become more mental then physical.  I was admitted to the  ICU to desensitize (again) to the antibiotics my body needed.  I was also given some anti-anxiety medicine that helped calm me but I still felt miserable.

 From my vantage point now I can tell you that I was having a reaction to a combination of very strong drugs that had been given to me.  I was not loosing my mind. After two nights in ICU I was moved back to the ninth floor; back to familiar faces that I trust to care for me.  Once again they have nursed me back to life.  (Pun intended.)  I thank God for good medical care.

So now on this third day of spring I celebrate coming home.  Winter is over, a new season has begun.  

Staying in the Strugglle

I just finished watching 65_redroses, a documentary about Eva Markvoort, a Cystic Fibrosis patient. The movie documents Eva's life before and after transplant.  I could relate to her fears and her hopes. I could relate to her sense of isolation in the hospital. Eva received her transplant at age 23.  She died two years later.  I wish the movie had a different ending. I wish she was still alive.

I am home after spending 10 days in the hospital.  I'm finishing my IV  antibiotics at home. I'm grateful to be home yet recognize the strain that it puts on me and my family.  I have round the clock antibiotics so I am so tired,  I do not feel fully present. The medicine makes me nauseous. My sleep schedule is off. I feel off balance. I am tired of struggling to maintain my health. It's a fight that is never over. I feel weary.

At this moment I am aware of an 8 year old CFer who is being admitted tonight to the hospital, a 16 year old CFer who is scheduled for surgery next week, a 25 year old CFer who has been waiting over 6 months for new lungs and a 38 year old CF transplant patient that died last week from rejection.  They struggle.  I struggle.  The struggle continues.

Homesick.....

As I am longing for home tonight this song brings me comfort:

There's more that rises in the morning
Than the sun
And more that shines in the night
Than just the moon
It's more than just this fire here
That keeps me warm
In a shelter that is larger
Than this room

There's more that dances on the prairies
Than the wind
More that pulses in the ocean
Than the tide
There's a love that is fiercer
Than the love between friends
More gentle than a mother's
When her baby's at her side

And there's a loyalty that's deeper
Than mere sentiments
And a music higher than the songs
That I can sing
The stuff of Earth competes
For the allegiance
I owe only to the giver
Of all good things

CHORUS:
So if I stand let me stand on the promise
That you will pull me through
And if I can't, let me fall on the grace
That first brought me to You
And if I sing let me sing for the joy
That has born in me these songs
And if I weep let it be as a man
Who is longing for his home

Step By Step by Rich Mullins

I'm hoping this is my last night in ICU. Finding comfort in this song-

Sometimes the night was beautiful
Sometimes the sky was so far away
Sometimes it seemed to steep so close
You could touch it but your heart would break
Sometimes the morning came too soon
Sometimes the day could be so hot
There was so worth much left to do
But so much you'd already done

Oh God, You are my God
And I will ever praise you
Oh God, You are my God
And I will ever praise you
And I will seek You in the morning
And I will learn to walk in Your ways
And step by step You'll lead me
And I will follow You all of my days

Sometimes I think of Abraham
How one star he saw had been lit for me
He was a stranger in this land
And I am that no less than he
And on this road to righteousness
Sometimes the climb can be so steep
I may falter in my steps
But never beyond Your reach

Life Today.

New beginnings are exciting and frightening. I am now a business owner.  I founded a tutoring service called Fusion Learning Center.  Our  mission is to unite life and learning by providing a positive educational experience through creative teaching methods, a supportive environment, and character development. Our goal is to prepare students for future success by engaging them in a dynamic academic program integrated with effective life skills.

We are scheduled to open in two weeks.  I have 5 students signed up, 2 of them are mine.  I don't think I'll be getting rich any time soon and that's not the point.  The point is to provide for my children's educational needs.  The point is to pour my energy into something substantial that will impact others, the point is to live well.

I am putting together a team of like minded people who want to change the world through education.  This feels good, purposeful, energizing and exhausting.  I hope I have the skills to be an entrepreneur. I hope I have the energy to sustain the vision when it's hard to see it coming together.  I hope, I hope, I hope.....

The State of Things Today

Last year at this time I had already been in the hospital twice and was beginning a major decline in my health that would eventually land me back at Duke hospital in North Carolina being evaluated for a double lung transplant.  To say it was a hard year is like saying the ocean is a little wet.  I have been stretched to my limit then stretched some more.  Seems like the stretching is still not finished and I wonder if it ever will be.

Break down the word disease and you get dis ease, this literally translates to the state of not being at ease.  In other words- struggling.  Add Chronic to the disease and you get continuous struggling. 

I live in the tension of accepting that life is a struggle and life is a privilege.  As I type this I am not wearing my oxygen mask.  I can breathe fairly easy and maintain my oxygen saturation level when not exercising.  Breathing is a privilege not afforded to all.  I am thankful, I am grateful and I am struggling.  Life is not compartmentalized into nice boxes with clear labels marked ease and struggle.  Life is a continual  mixture of both pleasure and pain for all of us,  even those with out dis-ease.