Peace by the river.

The years I spent visiting the Gauley river valley were some of the best summers of meditation, reflection and self discovery.

  My job was to report to the photo lab around 8 AM, gather rafting trip times and camera gear.  Afterwards I would drive for up to an hour out highways, country roads, forests service roads, and finally to river access trails.  There the trip began, with 20 some pounds of camera gear, a book, lunch and water on my back, machete in my hand as I started the hike down to the river.  Once there I would set up the camera so to catch the rafters as they would pour over the rapid.  Here I would set for hours with a book, food, water and isolation.  This is when I could focus on the upcoming and past events of my life.  Of course health issues was on the top of my mind.  Somedays the small but extreme hike into the river valley seamed as though I could have been miles deep into a amazon rain forest.  In the spring the rain would be pouring down and have everything steaming with moisture.  This also made the steep hillside slick with mud and old leaves.  None the less I went with the courage of a native bushman.  My destination was to arrive at a particular spot on the river before the rafters showed up so that I could compose myself from the hike in and be ready to capture ever one that went over the rapid that day.  This was, however, only half of my task.  Getting in and out of the valley was the real task at hand.  Some days were full of the excitement to get there and back.  Others, it was if there was no option to go or not, I went no matter how I felt.
  These days gave me all the time in the world to focus on my health, mind and spirit.  Most of the time I spent hours alone in the woods with nothing but the buzzing of a two way radio to keep me connected to the outside world and the crashing of the river.  Birds would come and go, the occational crashing of twigs and rocks in the woods.  Though I never saw anything when this would happen,  the vegetation was too thick, I knew it must have been a deer or bear.  These days allowed me to dream of a life without lungs complicated by CF.  They gave me the time to read some of the most profound books in my life.  Ideas that others have found in life and some that I was discovering as I read them.  Almost like a crystal ball into my own life.  Seneca, Wayne Dyer, Krishnamurti, David Suzuki, and Terrance McKenna to name a few.  Although I went though a lot more authors. These were the guys that spoke to me and stuck in my soul.
   Sure I did other things durring this time, a lot accutally.  Many concerts with friends traveling to PA, NC, SC, OH.  Many week long trips to Morgantown to have check-ups at my clinic and most important to visit friends.  There was a lot of support at that time from all areas of my life.  And I guess to give a little background to it all.  I start off this job as a whitewater photographer knowing that lung transplant was already being mentioned at my clinic visits.  I of course rebuking and denying that I will ever do something like that.  I now was living my dream as a paid photographer!  I was going out into the woods daily, pushing myself to my physical limits all the while expanding my mental limits, attitude.  I called it "making peace with life."  And why not, at the time I was 28 years old, in what I thought the best physical condition of my life. Despite what all the numbers were saying at the Dr's office. And living, literally in, my dream job.
  As time goes on though my health took at sharp turn downhill.  Within no time, it seamed, I was having the hardest of times walking in and out of the river valley.  Dr's are suggesting I wear oxygen for the hikes and over time started expressing their concerns for lung failure if I continue pushing myself like that.  Just as quickly as I watched my dreams manifest before my eyes, they were being stripped from just as quickly.  Only after 3 years of living this "super cool" lifestyle I was beginning to make trips to a transplant center.  This all took more time, more energy, and a greater toll on my mental attitude than all the preceding years of my life.  This was me accepting my fate, my disease, my problem, my life.  And for the most part it wasn't anything I wanted.  But all the knowledge I had gained and all the peace I had acquired from those couple years sitting beside the river was all support for my "self."
   Like building a block wall, when it is young and not supported you see that at any time it could be destroyed by any strong wind that may pass. So I had build a foundation that could hold up to the pressures of facing a double lung transplant.
   For the most part it wasn't what the surgery was all about, it was all the risks, complications, and what if's that where involved.  I had spent 30 years understanding my body, knowing what to do if it got sick.  But now all that was to change and just to be honest the odds did not look good.  As if not being able to breath after trying to bathe yourself is a complication, because I was almost to that point.
  It was those years I spent alone in the woods deep in the Gauley river valley that gave me the peace to get my head together and prepare for the second part of this wonderful, amazing life.

 Allman Brothers Band/Widespread Panic

Charlotte, NC 10/3/9

Pillow Rock, Class V.  Gauley River, WV

Transplant Day

  Two months and a few weeks after being listed for a double lung transplant I had received 5 phone calls for potential lungs.  This morning was my last day living with those congested, broken lungs.

 It was early in the morning, which was the usual time that a coordinator would call.  I was already outside hand washing my Jeep from all the dust and dirt.  Of course having my phone within arm reach and half of a travel bag packed sitting out. While cleaning on my Jeep I get a call from Pittsburgh.  Knowing who it was and what they wanted I still was a little jaded from the other false alarms yet nervous because the more time that passed the greater my odds of getting that perfect set of lungs.  Drying my hands from the soapy water I answer with a casual Hello.  The coordinator on the other end went thru the basic questions they needed to know so we could proceed.  No, I haven't had a fever. Yes, I feel fine, Yes, I am home and can leave immediately.  This time the questions seamed brief and to the point.  For what was to follow was a quick run down of instructions to prepare for arrival and surgery.   This time she had the confidence and authority in her voice that led me to think "this is it."

  My home was 200 miles south on I-79 of the hospital. A mountain interstate full of hills, curves, trucks and traffic.  Which by this time I had known the route well and so I fill up the gas tank, alart my family and friends then took off North to the hospital.  90mph, flashing lights, horn and me behind the wheel.  I had 3 hours.  3 hours to think about life and love.  To re hash my life, find peace and strength for my arrival to UPMC.  Half way was my old college town and best friend who I picked up to be with me.  You see I didnt want support, I had all I ever needed from family and friends but this was my journey.  But the closer I got to my fait the sound of a good friend over the phone was too much to bear.  Shannon joined me in Morgantown and was now along for the ride to surgery and what ever came afterwards.  We laughed, cried,  talked and navigated thru that pittsburgh traffic.  I needed her then, although I didn't know how much at the time I can reflect back and just to have a friend by your side can make all the difference in the world.

Arriving at the ER entrance I was checked in, put into a room and waited   "All that rushing," I thought "I could have took my time and gathered myself better."  But there was no need to deal with a surgery that can potentially kill you the only thing you think of is how invincible I feel now.  Adrenaline I guess, I should know because my whole life I have been seeking those types of adrenaline rushes.  So this one was no different  life or death. Go in give it your all and wait to see the outcome.

  By the time I was prepped for the operating room my parents had arrived and we all just waited.  No word from the staff if this may be a "dry" run.  Everyone seamed positive that the lungs they where preparing for me were the perfect set I had been waiting for.  As time grew near for me to be took back into Anastasia  We all hugged each other, expressed our love and I tried to show the positive attitude and joy I had for this big even.  If I live, I will walk away with a new set of lungs that will allow me to break the bondage of the old lifestyle.  And if I didn't, I feel I did everything I could in life with the old broken lungs that I would have demand respect from any pulmonologist.

  The time had come for me to go under.  I was truly at peace, ready for what ever my come next.  I asked the nurse to just put me out quick, because I didn't know how long I could hold this peace   How long it would be before I understood the brutal realities that are taking shape and I totally loose my cool.  You see, to be facing something like this over and extended period of time you get a chance to think it over and over, you get to see what you have done with your life and what you will do with the next.  All this consumes you and what the statistics, doctors, nurses, PFT's don't matter anymore.  You just feel alive!  So that is where I was, on and off, for weeks leading up to this surgery. Alive!

   After surgery I was Alive. and it was now time for me to do my part to be strong, and positive   Because it isn't like they wake you up and you can breath.  You must now work, work for every breath harder than what I did climbing out of the New River George all those days.  Machines, wires, tubes, beeping, hissing, buzzing.  I felt like I was one of those pedestrians that had a bad encounter with a truck on the highway.  All these people in white and blue tending to my needs and keeping me alive.  We all worked hard, and that hard work payed off.  Time in the hospital was broken down into baby steps.  When I can breath on my own, then I can try to stand.  When the O2 comes up to a particular number then I can walk.  So it went, one thing lead to another each building on one another leading to freedom from the hospital and independence.

   Independence came fast, once I was on my own with Summer taking the role as primary care giver, motivator  friend and a positive attitude to be supported by durring recovery.  It was around this time that I was told I need to "take it easy," Ha "take it easy."   I just got a new lease on life, I can breath and a whole new world has just been opened up to the adrenaline junkie.  Take it easy was a wrong choice of words.  I wanted to take it fast and as hard as I could, There was a Life I needed to Live!!

Adventures in India, local snake charmer

To Duke

This is to my friend of 6 years who I miss.  If you could read and we could talk there is so much I want to know from you.  For you have seen me at my worst and we have played our best.  Though our paths have be radically changed, I still think of you.

  Hi Duke, Buddy,
   I want to first of all tell you that I am living a much better life than what you saw me last live.  I know there were times while I was coughing that you were concerned because it showed in the way you would come up to me and place your head on my lap.  Or at night I would wake up to your cold nose on my hand after coughing for a few minutes.  I know those days were rough, but Its better now for me.  Just dont think that those times are forgotten, I will always remember the quality time we had together.
   Remember the first few months after we met, I wanted to teach you so much. Frisbee was the name of game for Us and as the years of play advanced there wasn't a thrown disc you couldn't catch. I think of that as I look out over this small yard of mine.  We wouldn't get far with those skills out here.  I am glad to hear that you still play the game, good for you.
   Those 6 years we lived together were some of the best.  At first we had routen trips to Coopers Rocks and Blue hole.  Hiking around in the woods and swimming in the river, we had a blast.  Those memories will be with me always.  Then you come with me on this hair brained idea to move to New Mexico, it was tough with declining health and no room for you to play.  I know we were both happier in West Virginia.  You are a good travel buddy, the 2100 miles across the county twice, I think you understood what we were doing.   Good times Hu? Duke!
   Today is a rainy day in southern California.  Its not the same as our home in Craigsville where we would lay in the floor to take naps and if there was a thunder storm you would jump up in bed with me day or night.  I know you were scared, we were there for each other.  I think when I starting working full time on the river it was tough for you.  But it didn't take long for you to start joining me.  I loved those day of just you and me walking across rail road bridges to get to work.  I think you understood why I hiked so slow out of those spots, you never left me and always came back to check on me.  Thank You for that, it ment a lot to me.
   After transplant you again hit the road to visit me in the hospital, somehow knowing what your job was.  I was so excited to see you there.  This meeting however was bittersweet.  It was the start of my journey, and while I was making plans I didn't include you.  It isn't that I didn't want to there where too many unknowns about moving that i didn't know how to include you.  And because of that I am sorry.
  I cherish the last days we had together.  It was fun to go over some of our old stomping grounds with new lungs, enjoying the moment and the flashbacks of our many other trips.  Stay healthy and live long.  I hope we get to see each other again one day.

Love Ya Duke,
Andy 

A summary

Author: Lundy Bailey II, The Nicholas Chronicle 1/24/2013

Expressions to another

    After my CF doctor started getting serious with me about transplant he gave me the e-mail address to a post transplant survivor to talk to about some of my concerns.  Ana Stenzel and I have been in contact for almost two years now and recently I have had the chance to watch the documentary "The Power of Two."  A film about her and her twin sister Isa growing up with CF and both surviving double lung transplant.  At the end of 2012 I drove to Pasadena to meet with the Ana, Isa and their family at a hanger where the Donate Life float was being decorated for the Rose Parade.   Our photo 
    This e-mail to Ana in April of 2011, I had recently got back from a trip to Aruba with Summer.  At this point in my life it was a task to pack; medications, nebulizer, and bi-pap machine.  As you can imagine taking a number of flights and leaving the county packing a pharmacy worth of health care needs with me attracted some attention from security.  Though it didn't cos any major problems it was embarrassing to pull out all this equipment so the officer could inspect it.  Despite all of the extra baggage, the trip to Aruba with Summer* was a wonderful time.
*Summer and I were not dating at this point in time.

E-Mail to Ana on 4/21/11
    Well, I am at a loss of words.  I had a follow-up visit at UPMC (the transplant center) and all I really got out of it was that compliance is the key and now I need to go on O2 day and night.  I have only been using it at night with a Bi-Pap machine.  I dont feel confortable going about my daily life with oxygen tubes hanging off me. . .  Just one more step toward transplant, but geez, I sometimes question how much can one single person take?!  I am single,  its been a while since I've had a steady girlfriend.  Partly because of CF and partly for what I feel for Summer.
However, what bothers me the most is holding back because of CF and now this BIG surgery in the near future.  I don't exactly know how to mix my medical world with a personal relationship.  I feel like over the years I have had to become "cold" to certain things in life, my life.  How can I ask another person to join me in the journey of life when I am on this crash course of my own?!    Aruba was great, it has been the third tropical island I've visited and as I grow as a human the more these trips mean to me and the more I get out of them.  Grenada, and Bahamas are the others I've visited in the past years.  This time, more than ever I could tell that being at sea level and the salt in the air made breathing easy.  Well easy as it can be.  My friend that went with me got to do two dives and she is eager for me to get some lungs as so I can join her.  It is so good to hear that you are diving!
    Back in reality, my lungs have been far from fit living at 2300 foot altitude and rainy/humid days.  Irritation, frustration, and just plain out anger have all went through my head.  This "one day at a time" plan is good on the good days but when I start off the mornings breathing hard and extra mucus it seems like the good days are soooo far off.Anyway,  I'm looking at the future yet dealing with the present.   Is there a happy medium in there anywhere?

Take Care,
Andy