TMI

For those of you who don't know TMI stands for Too Much Information. TMI sums up this week for me. In the past 4 days I have learned that after transplant most people go home from the hospital taking insulin because all of the immunosupresant drugs you receive causes you to develop diabetes. I have learned that it is not uncommon after transplant to receive a stomach wrap. This procedure stops the new lungs from being damaged by acid reflux. When you receive a stomach wrap you can not eat or drink for weeks, maybe months at a time. You are fed through a G-tube inserted into your small intestine via a bag of nutrients that you receive similar to an IV. This week I have learned that if the doctor advises you to have a tracheotomy (also not uncommon) then you should happily receive one because they wouldn't recommend it if it wasn't needed. I have learned that the prescription drugs you receive after transplant can make you grow hair where you don't want it, lose the hair you do want, cause irritability and mood swings that can make you feel a tad crazy and, by the way, you will probably be on these drugs the rest of your life.

I am happy to report that in spite of feeling very overwhelmed I have processed all of this information without the numbing help of alcohol or narcotics; not that these substances have ever been a problem for me but I did think if there ever was a time to drink or take drugs now might be a good opportunity.

I am going to the ocean this weekend. I am going to bask in the sun. I am going to come to terms with all of this information.

What are the odds?

I am tired. Physically I feel exhausted and emotionally I feel overwhelmed. Each day brings new information that I try to absorb. Initially I was encouraged when I arrived here. I have met with a few post-transplant people and they assure me that the struggle of the exercise, the operation, the prescription drugs are all well worth it when they think about how easy it is to breathe. Their lives seem far from simple, post transplant life is similar to pre-transplant in that it is full of preoccupation about your health and the uncertainties that go with being sick. Rejection of the new organs can begin at any time. Yet they are grateful for the breath of life.

After a few days it dawned on me that I am talking to the "lucky" ones and I use that term very loosely. For everyone that I meet there are others who I don't meet because they are in the hospital, or too sick to exercise or dead. 15% of patients who go through transplant die the first year, 20% the second, 25% the third year etc. Only 40% make it to 10 years. I think I would walk away from a gambling table with those odds. Yet I can't walk away, this is the best gig in town. It seems the only thing that is 100% true is that there are no easy solutions.

Blue Monday

I don't feel like exercising today. I don't feel like facing the reality of my life. I feel like escaping...fleeing. If I were a drinker I would get drunk. If I were a smoker I would smoke (as if my lungs could endure that for very long.) If I were home in South Florida I would run to the ocean, seeing the endless water, the warm kiss of sunshine on my shoulders bathing me in light. The repetiveness of the waves reminding me there is nothing new under the sun. I am not the first to struggle nor will I be the last.

I have learned to ride the wave, the feeling will pass only to come again.

Fast forward

I've always been conscious of time, not in the way that I need to be on time to everything. (I was raised in laid back South Florida after all.) But in knowing that time is a commodity that will someday be used up. When I was younger one of my favorite songs was called Fast Forward by Prodigal:

Dreams all stop at 6am
the alarm clock rings once again
pump my body full of caffeine
aim my briefcase for the door
one more suburban blast off
hear the count down, 1,2,3,4

I don't want to be a number in a turnstile
another figure in a government file
I don't want to be a byte in the program
seven digits on a telephone dial

Fast forward, fast forward
time keeps slipping away
fast forward, fast forward
tell me where my life has gone
fast forward, fast forward
time keeps slipping away
fast forward

I do my job; I earn my pay
who needs dreams anyway
but now the days all fall in number
leaves on a dying tree
even wide awake I slumber
am I killing time or is it killing me?

I don't want to be a time-clock punch card
another scene on the cutting room floor
I don't want to be a marker in a graveyard
My life has got to count for something more

You can tell I grew up in the 80's. Since when does a telephone have a dial or only seven digits for that matter. As an adolescent I would play this song over and over and dream about all the places I would go and the things I would do. I was not simply going to pass time but make my mark on the world. In typical teenage angst I was chomping at the bit waiting to grow up and get on with my life.

Twenty something years later it seems I am still chomping away waiting to get on with my life. Today as I was exercising I pondered how I am approaching pulmonary rehab as a pause in my life. I was dreaming about how relieved I will be after transplant so I can move on to better things. I look forward to returning to work. I can't wait for my schedule not to be dominated by treatments, doctors appointments and the uncertainty of when the next health crisis will occur.

While looking toward the futures has it's place I realize that the reality is- this is my life. There is no need to wait for it, no need to move on, I am living my life. I do not want to sacrifice being fully present in the moment on the alter of waiting for the future. I do not want to miss out on the now by moving fast forward.

One small step for mankind.....

Today I walked one mile, a whole mile! It took me 24 minutes but I did it! Progress is being made.

Life in rehab

My day starts in the morning with the normal ritual of breathing my nebulized medicines- xopenex, pulmozyne, hypertonic saline and tobramyacine accompanied by constant coughing to clear out my lungs. Only now the routine is not mixed with the challenges of everyday family life. There are no kids to direct in homeschooling, no laundry to catch up on, no dinner to plan, no house to clean. I am responsible for only me, myself and I. What a strange feeling to have the constant pull from the tasks of life suddenly removed. I feel a little lost by myself.

I am off to pulmonary rehab at noon every day. I am there for 3 to 4 hours. I start the time with chest physio therapy, this is where a respiratory therapist beats on my chest and back in an effort to loosen the secretions. Lots of coughing is involved and I feel tired at the end but it is time to move onto stretching and breathing exercises. Then I walk for 20 minutes. Each step, each breath takes the effort of lifting an elephant from my chest and pulling the pachyderm along. After my walk I move along to weight training. The bigger your muscles are the more oxygen they need. I don't think I will be turning into Arnold Schwarzenegger any time soon. Finally I end on the nustep machine which is like a stepper but sitting down.

After rehab I took a nap in my van, eager to lay down, too tired to drive back to the hotel. I rested in the gentle sunlight and felt the warm embrace of nature caressing me, lulling me to sleep as I relaxed in the peace of the moment.

Along with the above described routine tomorrow I will begin transplant school, a series of lectures discussing all aspects of transplant. Do I really want to know more? What's the saying about ignorance being bliss?

Control Freaks and dizzy ducks

Knock, Knock

Who's there?

Control Freak. Now this is where you say, "control freak who?"

(If this joke did not strike you as funny then read it over a couple of times, it's complex humor that can take a while.)

I am a recovering control freak. I like my ducks in a row, in a neat symmetrical row lined up from head to tail with no variation. Sure I can be flexible, I like controlled spontaneity. (I like oxymorons too).

As I have pontificated before, the essence of life is beyond us, that which matters most we have the least amount of control over. The present economic earthquake has shaken many to their core helping them realize money is not at the center of all things. Lots of money amuses us so we don't have to think about what is at the center. It is good we are shaken so we can think about what is really important. However, it doesn't feel good.

When life is unstable we tend to micromanage so as to obtain some sense of control. When I say we, I am referring to all people as the control freak scale is a continuum and everyone falls on it somewhere.

Today I am reminded of the progress I have made in my recovery program. I am moving ahead without a detailed, nailed down, full proof plan. I am driving to Durham to begin the month long adventure of pulmonary rehab and all good pre-transplant proceedings. I don't know what lies ahead. I am not sure what it will be like. I will be by myself without my family for a large part of the time. I am not sure where I am staying. I am not certain of my schedule. As you can see my ducks are running about like renegade, foul fowl. God help us all.