Thursday, June 9, 2011
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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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
Wednesday, August 4, 2010
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.
Tuesday, August 3, 2010
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.
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.
Monday, July 12, 2010
Bottled Up
It seems that I only write when I feel I must because the words are about to all come out anyway. I do that in relationships, too. While I have been accused of being blunt, I tend to hold back on negative comments or criticisms until I feel that it will be sin to not speak up, but sometimes I still bottle up my views for fear that I will be rejected, will hurt my friend's feelings, or that I will simply be rebuffed. It is complicated, this business of when to speak and when to be silent, when to wrap it in a pretty package, and when to be plain and simple. After all, once the words are out there is no taking them back.
In my last blog I mentioned being nearly off all anti-depressants. Well, I am there, and it is no bed of roses! I can see that in relationships, just as in my medical care, I have to advocate for myself, if you will, to make my needs, desires, convictions known. As much as I am tempted to think that my husband should just know what I want if he really really loves me, I cannot expect him to read my mind. This is sooooo hard. If I don't verbalize to him what is going on inside of me we can get into a passive-aggressive game and have lots of unfulfilled expectations. A little vague, huh? If it hurts me to bend over and clean the tub because of the recent surgery, I need to tell him I need some help with that instead of playing a game to see who will clean it first. This is a pretty simple example, but I can look around my home and see so many simple examples of lack of communication. These things pile up literally and figuratively until it weighs down a relationship with junk. I don't want this for my relationship with my husband, or with anyone else, for that matter.
I think I will give myself a gift of a bottle opener with an inscription that says, "pray and count to 10 before using." Maybe this will keep me in balance.
In my last blog I mentioned being nearly off all anti-depressants. Well, I am there, and it is no bed of roses! I can see that in relationships, just as in my medical care, I have to advocate for myself, if you will, to make my needs, desires, convictions known. As much as I am tempted to think that my husband should just know what I want if he really really loves me, I cannot expect him to read my mind. This is sooooo hard. If I don't verbalize to him what is going on inside of me we can get into a passive-aggressive game and have lots of unfulfilled expectations. A little vague, huh? If it hurts me to bend over and clean the tub because of the recent surgery, I need to tell him I need some help with that instead of playing a game to see who will clean it first. This is a pretty simple example, but I can look around my home and see so many simple examples of lack of communication. These things pile up literally and figuratively until it weighs down a relationship with junk. I don't want this for my relationship with my husband, or with anyone else, for that matter.
I think I will give myself a gift of a bottle opener with an inscription that says, "pray and count to 10 before using." Maybe this will keep me in balance.
Tuesday, July 6, 2010
healing old wounds by reopening them
This morning I went to the medical records office at the hospital where I recently had some surgery so that I could get needed reports for the new surgeon whom I will see later today. I finally got the courage to get the records from the delivery of my second child. Courage was needed only because the delivery was nothing short of a nightmare, leaving both me and my baby near death, save for the grace of God and the skill and quick thinking with which He equipped our doctor.
Truly, I was traumatized that day when things didn't go as planned. Brock went into distress due to the cord wrapped around his neck, and Dr. Wood had to switch gears from the intended vaginal delivery to an emergency C-section. When she made the skin cut she found my little baby already out of the womb, in my abdomen, my uterus completely ruptured. Brock was blue, not breathing, limp, and had a low heart rate, minimal responses. The Apgar score was 2 out of 10, with 10 being normal! After resuscitation and 5 minutes of O2 his score was up to 7, and finally made it up to 8 after 10 minutes. Meanwhile, I lost approximately 1 to 1.2 liters of blood. Dr. Wood, bless her fast hands, stitched up my uterus and sewed up my body.
Tears stream down my cheeks now as I recall the difficulty with bonding to the child who was disinterested and wouldn't look at me. The next few years were filled with hours long screaming tantrums which, I learned today from a pediatric Physical Therapist friend, can be caused by birth trauma. He has been plagued by hearing difficulties, now mostly resolved, and some difficulty with learning. Though he is very bright, consistently scoring very well on standardized tests, he lives in his own world a great deal of the time. On the other hand, Brock can entertain himself easily with reading, Origami, science experiments and magic tricks. We are thankful that this year he unlocked a hidden musical talent and is playing the clarinet beautifully! We look forward to when we can afford the piano lessons he so desperately desires. At 12 years old he seems to finally be making forward strides in regard to his social awkwardness but still struggles with an over-the-top anger problem, with outbursts way out of proportion to the stimulus.
This summer has been a tough one for our family. I had to have surgery to repair a problem related to scar tissue from the above complications and from the later hysterectomy; my older son Brighton is in a brace due to an unstable fracture in his spine, and my husband's liver disease has been giving him some grief. All of this has forced Brock to step up and grow up. While I have struggled most of my life with depression, I am finally approaching being medication-free. The Son is shining, and it is a beautiful day, indeed!
Truly, I was traumatized that day when things didn't go as planned. Brock went into distress due to the cord wrapped around his neck, and Dr. Wood had to switch gears from the intended vaginal delivery to an emergency C-section. When she made the skin cut she found my little baby already out of the womb, in my abdomen, my uterus completely ruptured. Brock was blue, not breathing, limp, and had a low heart rate, minimal responses. The Apgar score was 2 out of 10, with 10 being normal! After resuscitation and 5 minutes of O2 his score was up to 7, and finally made it up to 8 after 10 minutes. Meanwhile, I lost approximately 1 to 1.2 liters of blood. Dr. Wood, bless her fast hands, stitched up my uterus and sewed up my body.
Tears stream down my cheeks now as I recall the difficulty with bonding to the child who was disinterested and wouldn't look at me. The next few years were filled with hours long screaming tantrums which, I learned today from a pediatric Physical Therapist friend, can be caused by birth trauma. He has been plagued by hearing difficulties, now mostly resolved, and some difficulty with learning. Though he is very bright, consistently scoring very well on standardized tests, he lives in his own world a great deal of the time. On the other hand, Brock can entertain himself easily with reading, Origami, science experiments and magic tricks. We are thankful that this year he unlocked a hidden musical talent and is playing the clarinet beautifully! We look forward to when we can afford the piano lessons he so desperately desires. At 12 years old he seems to finally be making forward strides in regard to his social awkwardness but still struggles with an over-the-top anger problem, with outbursts way out of proportion to the stimulus.
This summer has been a tough one for our family. I had to have surgery to repair a problem related to scar tissue from the above complications and from the later hysterectomy; my older son Brighton is in a brace due to an unstable fracture in his spine, and my husband's liver disease has been giving him some grief. All of this has forced Brock to step up and grow up. While I have struggled most of my life with depression, I am finally approaching being medication-free. The Son is shining, and it is a beautiful day, indeed!
Friday, June 4, 2010
When Hope is Not Enough
Skin care company Philosophy and their many followers boast their product "Hope in a Jar" facial moisturizer. I just love the whole concept of being able to buy "Hope in a Jar." My last few years have been challenging, to say the least, as many friends will testify, and I could really use some "Hope in a Jar." I bought it, slathered it on my dry, parched skin, and waited for the miracle. But guess what. "Hope" was not enough for me. I had to go their next product, "When Hope is Not Enough."
That, I believe, is the epithet of these challenging years: "When Hope is Not Enough." Years when while we were paying two mortgages and two sets of bills my husband was diagnosed with a rare liver disease which will eventually call for a liver transplant. When I suffered multiple orthopedic injuries that pulled me away from work for weeks at a time. When I was surprised with having to have what I call "The Hysterectomy from Hell." When my oldest son was diagnosed with a spine fracture that had slipped out of place and must wear a brace-cast for three months to avoid surgery. When I was rushed screaming to the hospital and had to undergo emergency abdominal surgery to repair an intestinal blockage. These are the years when, truly, hope is NOT enough...
Unless that hope is Jesus. When I was lying alone in my dark hospital room in horrible pain, doctors not knowing what was complicating my recovery, I thought to myself, "This could be it. I could die here alone in this room." But I wasn't alone at all. Jesus was there when my human hope was not enough. He was there in He was there when I returned home feeling terrible with no answers as to why I had so much pain two weeks after surgery, still afraid I might not make it twenty four hours before going back to the hospital. And He was there when I cried out to Him for help, to calm me. He calmed me with the Twenty Third Psalm, The Lord's Prayer, old hymns, new praise music. He is there in the friends who selflessly prepare meals for me and my family, in the friend who came over and helped my husband clean, in my kids who do laundry and wash dishes.
I often wish I could fix everything myself. I want to buy something at the mall that will take care of all the problems. I want "When Hope is Not Enough" because it means I found the solution. But I can't. It is not enough. Only Jesus.
That, I believe, is the epithet of these challenging years: "When Hope is Not Enough." Years when while we were paying two mortgages and two sets of bills my husband was diagnosed with a rare liver disease which will eventually call for a liver transplant. When I suffered multiple orthopedic injuries that pulled me away from work for weeks at a time. When I was surprised with having to have what I call "The Hysterectomy from Hell." When my oldest son was diagnosed with a spine fracture that had slipped out of place and must wear a brace-cast for three months to avoid surgery. When I was rushed screaming to the hospital and had to undergo emergency abdominal surgery to repair an intestinal blockage. These are the years when, truly, hope is NOT enough...
Unless that hope is Jesus. When I was lying alone in my dark hospital room in horrible pain, doctors not knowing what was complicating my recovery, I thought to myself, "This could be it. I could die here alone in this room." But I wasn't alone at all. Jesus was there when my human hope was not enough. He was there in He was there when I returned home feeling terrible with no answers as to why I had so much pain two weeks after surgery, still afraid I might not make it twenty four hours before going back to the hospital. And He was there when I cried out to Him for help, to calm me. He calmed me with the Twenty Third Psalm, The Lord's Prayer, old hymns, new praise music. He is there in the friends who selflessly prepare meals for me and my family, in the friend who came over and helped my husband clean, in my kids who do laundry and wash dishes.
I often wish I could fix everything myself. I want to buy something at the mall that will take care of all the problems. I want "When Hope is Not Enough" because it means I found the solution. But I can't. It is not enough. Only Jesus.