Crying

Friday, September 9th I was introduced to the new CEO at the rehab hospital where I work.  It feels like I have been crying ever since.  He is evil personified; he is slick, smooth, and tries to act folksy while cutting employee paid time off (holiday, vacation, and sick time all in one) from 26 days to 20 days per year and telling us we have to do better at making our customers happy while he cuts staff.  He's a shark.

I worked the next day, Saturday, to make up for having to take off Thursday for Steve's doctor appointments.

Then, of course, there are all the stories and TV documentaries surrounding Sunday's 10th anniversary of 9/11.

I could barely walk or stand at church Sunday because my foot pain was so bad.  Ditto Monday, but I still had to work.

Tuesday Steve and I took the day off for his colonoscopy and cardiology appointment and my orthopedist appointment.  Steve's appointments were okay, but my appointment, not so much.  While I was sure I could simply get another very painful injection in my very large, very painful neuroma and schedule surgery to remove it, doc found another problem.  Now I have to go for an EMG and Nerve Conduction test to determine if I have a problem in my back also.  This means it is longer before injection and surgery.

That means I can't quit my job or even give notice so that I can plan when I can start a new job.

The whole week has been very physically painful and just as discouraging.  Yesterday morning I was working with a patient who was cognitively impaired after spine surgery, and I had to try to lift and move her heavy body by myself.  There simply was not enough staff to help me because corporate keeps cutting staff.  I almost hurt my back because of them.  When the Shark sat at my lunch table only a couple of hours later to discuss a patient's care with another therapist, I could feel the presence of evil next to me. Really.  I couldn't look at him, and I had to leave right after he did, and all I could do is cry.

I worked again today, second Saturday in a row.  Nevermind all the various corporate investors and real estate companies that want their piece of the therapy pie, the insurance companies also have to make money off of us.  A patient who very much needs more rehab time will have to leave on Wednesday because her insurance company won't approve more time, compromising the progress she could make.  And I had to work overtime, again, without pay.

And today is the 39th anniversary of my Dad's death.  

I know God is in complete control of all of this. I also know that as a believer I have to love and forgive my enemies.  But do I have to have lunch with the enemy?  What does God want me to do with my whole complicated situation? Nothing.  I think God just may take care of all of it for me if I wait it out.   I believe it is not in my family's best interest for me to continue to work where I work so many hours and cannot be with them.  I wonder what is ahead.

Wake me up when September ends.

No News is just No News

As of today we still know nothing in regard to Steve's transplant evaluation.  He is still in the evaluation process, a process which apparently takes MUCH longer than this girl thought it did.  On September 8th, also my 49th birthday, we go for the next follow-up and more specialist appointments.  We will just take it as a day for us.  We will go to some cool shops in the Bishop Arts District and go out to eat so that the whole day is not just medical.

In the meantime, Steve is doing well.  He has some really itchy nights, a side effect of the disease, but otherwise is quite good, thanks be to God!

Tomorrow we leave for  a vacation to Tennessee where we will go white water rafting, hit some cool historical sights, and have a good time with friends.  Please keep our safety and relaxation in your prayers.   God knows how much we need to relax!

Catching Up

Today my husband Steve and I celebrated our 19th anniversary!  We actually spent Saturday celebrating but had a quick dinner out without kids tonight and shared cards with each other.

We still do not know the status of Steve's transplant evaluation. He had to  have a second TB test; no, he does not have TB, but his first test was inconclusive.  That delayed the process.  In the meantime, Steve's family members have been descending upon our house every Saturday to help us complete all the work for the renovation.  As exhausting as the process is, it is so encouraging to see family in action.  I see Jesus in these men.  The smiles speak volumes of the love put into the labor.

Now we are trying to plan an end of summer vacation on a, to put it politely, limited budget.  hmmmmm.  But our family needs a vacation.  Originally we planned on Destin, but now we have nixed that in order to go for something a little friendlier on our billfold--visiting friends in Tennessee or perhaps elsewhere.  How cool would that be if cousins from the east coast could meet up with us somewhere. The big thing is relaxing.  Chilling out with some boating, fishing, soaking in the Appalachian air.  I feel myself being transported as I type.....

cracked pot chronicles: My Husband Steve has a Liver Disease

cracked pot chronicles: My Husband Steve has a Liver Disease

My Husband Steve has a Liver Disease

The Disease: Primary Sclerosing Cholangitis

This disease starts as inflammation in the bile ducts and progresses to scar tissue which eventually spreads to the liver causing cirrhosis and liver failure. There are numerous possible complications, some of which Steve has, some he does not have--so far.  He was diagnosed with this disease in 2007.  We have been blessed to have gone this long without too many problems, but now the disease is progressing, and all the doctors agree that it is time to look toward liver transplant.

Steve goes to The Liver Institute at Dallas Methodist Hospital.  Methodist has a long history as a leading transplant provider.  We are very confident in their capable team.

The Transplant Evaluation: 

Steve recently underwent a Transplant Evaluation.  To get on "The List" that we all hear about, a potential candidate must go through a battery of medical evaluations to determine if the person is healthy enough to survive the transplant and the medications that will follow.  Steve is in great health other than this disgusting disease!

The Transplant Team meets on Thursdays to decide who is an appropriate transplant candidate for "The List".  We will hear about this later this week.

MELD Score:

This is how people get ranked on The List.  It is calculated from 3 lab tests.  Right now we do not know his MELD score.  The surgeon thinks it is probably going to be between 10-and 13.  In this region a person needs a score between 25-30 to move up on the list for high priority.  

            With Steve's disease it could  be years before his MELD score is that high because the lab value that will worsen the quickest gets the least weight in the MELD score calculation.  And Steve needs a liver sooner rather than later because the longer he has his own liver, the more likely he is to develop cancer in his bile duct, known as cholangiocarcinoma, one of the possible complications of his disease.  

            The good thing is that while he may not shoot to the top of The List, he can take a liver that isn't A+ quality which someone else higher on the list rejected and be cured!  Because Steve is in such good health otherwise, he does not need a super duper healthy liver; he can take a less than perfect one, and that liver will eventually catch up to his great health.  yay! 

FAQ’s

 How did Steve get this disease? No one knows. The disease is difficult to research because so few people have it. At any given time there may be 1000 people in the US with PSC.  They know it is not genetic. 

1.  What will happen if Steve doesn’t get  a transplant?  Let’s just not go there.  Short of divine intervention or transplant,  the progression of this disease can be pretty nasty and end badly. 
2. Can he take a partial living transplant?  Partial transplants from living donors are done less and less because of the very high risks to the donors.  They have to harvest 2/3 of the donor’s liver to give to the recipient.  For someone Steve’s size, that would require a really huge donor!  Even so, it is a very very poor option and is done in a rare few hospitals in the country.
3. I thought the liver regenerated itself. Why doesn’t it just heal?           When the body is attacking itself, as is the case in this auto-immune disease, the liver just gets sicker and sicker and drags the rest of the body down with it. 
4. Isn’t there a medicine he can take to treat it?  There is no known effective treatment.  The medication Steve took for the last 4 years has recently been shown to improve lab scores while the disease continues it’s progression. 
5. How much does a transplant cost?  I do not know the cost, but we have great coverage with our insurance!  That said, there will be my time off of work, medications, and who knows what else.  We are trying to get our ducks in a row so that we will be as prepared as possible.
6.  What can I do to help?    First and foremost, pray for Steve’s health, for us to make some lifestyle changes, for the kids and for a new liver.   We may wind up having fundraisers later on.  We’ll keep you posted.  Right now we are just trying to get the renovations completed on our home so that the stress burden will be lightened on all of us. 

I hope this has been helpful and has answered your questions.  If you have anymore questions, please feel free to email me. 

Lisa Redding

lisareddingpt@mac.com

Sunday School Teacher

“I’m outta here,” she said

“What you did to me in that bed

was wrong.”

You think that I’m not strong

Enough to leave, but I am.”

And out the door she flew

With nothing but her shirt and shorts and shoes

Screen door slammed

And BAM

She knew

He came too.

This day might be her last

Could go slow or really fast

Thinking ‘bout the past

How Daddy knew

And warned her too.

“Jesus help me!” came her scream

from the bottom of something inside

Nowhere to hide

This time.

Three doors down across the street

A lady in her gown and bare feet

Heard the plea

And placed the call

Armor on and Truth in hand

She made her way to unknown land

Addressed that man,

“In the name of Jesus, I rebuke you!

Get thee back, Satan!”

Angels were singing and sirens were ringing

But he heard none of it

As he turned his anger all of it

To the lady with pink curlers in her hair

It wasn’t fair;

Life rarely is

That she should go like this.

Shaking in the aftermath

She picked up from the garden path

The woman’s book.

It was made with love and care

No words in there

Tattered and torn, meant to share.

Pages of colors bold

Followed by the story they told:

Orange is for Heaven so bright.

Yellow is for God’s perfect light.

Dark is for the sins we’ve made.

Red is for the blood He gave.

White is for our cleansing from sin.

Green is for our new life in Him.

Pink is for His free gift to share.

Purple is for the crowns we’ll wear!

First a spark and then a light

She had seen it before

Long ago as a little girl

She’d made a decision that was right

But strayed.

He was here today

Tears flowing now she prayed

And thanked her Maker

For salvation twice over

And for her Sunday School teacher

Who went to Jesus today.

Eighteen Today

Dawn is quakin'
Sleepy towns are wakin'
Some kid is shakin' in his boots
As he boards a plane bound to where freedom is just a dream
and they need him to bring some hope and build some steam
to end the nightmare of ruthless leaders
and bottom feeders
spillin' blood and squashing notions beneath their feet.

He's their genie in a bottle
Rub the lamps and pull the throttle
What three wishes will they choose?
Their own lives or
their kids' for future posterity
Or maybe it's prosperity
some seek instead

Leaving behind
Friday night lights
Where touchdowns make things right
and beans or no beans
is the biggest thing on people's minds.

Bound for barren lands,
Rabbit's foot and cross in hand
Say a prayer and breathe amen
Wipe a tear and calm the fear
Construct a facade of courage
Forge a dam to hold thoughts in reserve for later date
When the weight of third world countries
no longer rests on him.

"I'll show you"
last words to Dad
before signing his life away on the dotted line,
having no mind of what it would mean
to obey another man,
follow orders without question,
submit and surrender to a greater purpose
than being in by midnight.

Sober now, with mixed emotion
No turning back
But can't look forward

One step at a time

Breathe in

Breathe out

Breathe in

Breathe out

Count to ten

Repeat again.