Pre-transplant Evaluation

This seems surreal, I've been talking about transplant for soooo long; hard to believe it's really happening.

And so it begins.......

Day 1: 9 hours, 5 appointments- I completed a VQ scan and a CT scan of the lungs, 26 vials of blood drawn, chest x-ray taken, urine and sputum samples donated, a tetnus booster shot and a pneumonia vaccine received and a consult with infectious disease doctor.

Delicious ropa vieja for dinner at the Cuban revolution cafe. Time to call it a night. I am tired. Tomorrow's first appointment begins at 7:30am. Thank you everyone for your prayers and support.

Day 2: 10 hour day included ultra sound of the liver, meetings with nutritionist, surgeon, heart cath consult and an esophagography test. 

The latter test consisted of my body laid out in various angles while swallowing barium, an Elmer's glue like substance but less tasty, along with sodium bicarbonate crystals in order to produce gas. Strict orders were given to not burp. The end result was not pleasant. Think about the standard science fair volcano and you get the picture; not a pretty sight.

Day 3:   Easy day of testing. Lots of waiting for appointments. Good thing I am a patient woman. Pun intended. ;)

Day #4 of pre-lung transplant evaluation- Met with the social worker, the psychologist, the financial coordinator, the GI folks and lastly the rehab center. All went well except the GI appointment. I was unable to complete the esophageal manometry. They were not able to push the tube down my nasal passage into my stomach. Sinuses are too inflamed. As much as I wanted to get this over with I am grateful they were sensitive to my discomfort. The next time they try it will be with sedation. One more day- cardiac catherization in the morning- two tubes up the groin into the heart.


Day #5- Successful cardiac catheterization. Doc said he noted no reason to hold up transplant from his findings of my heart. Now I have to wait until the team meets next week. They will review all of the test results and let me know if they think I will be a good transplant candidate. 

Gratefulness AND anxiety

"To protect your thankfulness, you must remember that you reside in a fallen world, where blessings and sorrows intermingle freely." - Sarah Young

Gotta keep this in the forefront of my mind as I do my pre-transplant testing this week.  I'm so thankful for new lungs that are to come AND I'm full of trepidation about the hurdles that need to be crossed to get ready for the operation.  

Time to strap in and ride the roller coaster.

 

Being purposeful now.

We have spent the last four days in Georgia with my Mom, Sister, Aunts, Uncles and lots of cousins.  I am reminded again of how blessed I am. We had an incredible spread of wonderful food on Thanksgiving with enough leftovers to allow us to graze for days.

 My family loves me.  I feel their support and blessings as I travel tomorrow.  Our children will go back to Athens to be with friends while Tom I head to Durham, NC.  I will spend this week at Duke hospital completing pre-transplant testing.

I have been purposeful in not thinking about what this coming week holds.  There are some intense and invasive tests to get through in the days coming up.  I have been purposeful in trying my best to be fully present while being here with my family;  not allowing my mind to wander to the worries of the what if's.  I will continue to take life one day at a time, one moment at a time.

Life is fleeting.  There is a time and place for everything.  Now is the time for rest.  I choose peace in the present knowing the future will come and when it does, I will be ready.

I cry

When peace cannot be found
And sleep won't visit me tonight
A restless mind that I can't tame
I walk the floor I call Your name
Finally silence and the tears begin to fall

I Cry 
And You're the one who hears me calling
I fall 
So easily but You're there to catch me
Say the words that heal me
I'm safe when I'm with You
You touch my eyes and I can see

Oh the comfort that You bring
When nothing else can reach inside
Sympathetic friends are all around
Their soothing words fall to the ground
In silence I feel You here with me

I Cry 
And You're the one who hears me calling
I fall 
So easily but You're there to catch me
Say the words that heal me
I'm safe when I'm with You
You touch my eyes and I can see

Song by Russ Taff

Rebelling and relinguishing

"I think it would be wise if we head toward transplant."  the doctor said.

For years I have been waiting to hear these words.   Relief and resistance comes at the same time.  How sweet to think the struggle to breath could come to an end, how terrifying to think of The End.

"What if I refuse and say not now."  I ask.

"I don't know if you will survive another exacerbation."

My mind begins to reel out of control.  I fight my defense to argue , "You don't  know me.  You don't know how I bounce back."  The audacity of this man to predict my future.  "Do You think you are the first doctor to tell me that this disease will kill me." 

After the surge of panic is over I can see this doctor is not trying to  predict my future, he is not telling me how it's going to be, he's not telling me what to do, he's just stating his opinion based on his knowledge of the facts on paper.  He is kind and compassionate. 

I remind myself to lay down my shield, there is no need for defense, no need to rebel.  I am in control,  I am in power.

There is a part of me that is relieved and ready to relinquish; wanting to lie down and float on this new current wherever it will take me,  knowing there are rapids up ahead.  There is part of me that clings to shore, afraid of the water, fearing that I may drown.
 .

Thoughts for today.

I do not think of myself as fragile.  I do not think of myself as sick.  Denial?  maybe but I don't think so.  I know the facts but I have defied the odds long enough that I assume the stats don't apply to me.  I know I will die one day, everyone does eventually.  That day seems far off, always in the future.

28 days in the hospital, a new personal record.  I block the outside world.  Blankets hang on my window, tis easier to sleep with less light. I am so very tired.  10 steps to the bathroom is too far when dragging an IV pole, an oxygen monitor and a nasal cannula pumping precious oxygen.  10 steps leaves me gasping.

My world is shifting, priorities changing.  What really matters?  Breathing.  What used to be natural is now a calculated task - 3 liters at rest, bump to 5 to go to the bathroom.  The obnoxious alarm blares when I refuse to listen to my body and go e-v-e-r sooooo  s  l  o  w  l  y.  I adjust to a  snails pace.

Is this permanent or a bump in the road?  How long can you be in end stage lung disease before it's the end? 

Living in the In Between

I am lost.

I stand on jello.

My body is not right.

13 days on antibiotics and still a fever.

When will this end?

New lungs await.....someday.

But not today.

Today I am lost.