(We wrote this letter to be read to our church but also wanted to share it with our other friends as it explains Marianne's current health update and what is in our future).
Dear
Friends,
As
you probably know, Marianne became ill in January 2011 and has been sick since
then. She has been diagnosed with autoimmune hepatitis and autoimmune
cholangitis, two different liver diseases. These diseases are autoimmune,
meaning the immune system is attacking the body. Over the last two years
different teams of doctors have treated her for these diseases. The latest
group of doctors we have seen are what we call, the super-specialists. They are
the specialists that the other specialists turn to when the patient is a hard
case and the doctor does not know what to do. They have been great doctors who
know their stuff and obviously care about us personally, which we have been
very thankful for.
The
super-specialists admitted her to the hospital on April 1st because
of complications from her medications and concerns for Marianne’s liver health
as her liver enzymes and bilirubin were at high, unhealthy levels. As every day
passed in the hospital, more tests were done and the concern of the doctors
grew. Each day produced fewer answers, more questions, and more confusion among
the doctors. After staying in the hospital 11 days, Marianne has shown very
little improvement, and the docs told us they were discharging Marianne because
nothing they were doing was helping her. They also gave us a new diagnosis:
vanishing bile duct syndrome. This is a disease where the liver’s bile ducts
vanish over time for unknown reasons. The doctors described Marianne’s liver as
a “clinical anomaly,” as apparently no one has ever had vanishing bile duct
syndrome along with autoimmune hepatitis and autoimmune cholangitis. They told
us, “You are not supposed to have these diseases together. No one ever has
these together.” The doctors explained that they had sent some tests to another
expert for a consultation to get another opinion. Throughout this stay in the
hospital, we continued to pray for healing, as we have for the last two years.
We prayed for healing through the doctors and that God heal miraculously. At
this point it seems clear that God has answered our prayers, but has answered
them with a "No." Vanishing bile duct syndrome is not something
medicine can fix. Marianne will have to have a liver transplant.
Our
plan is to meet with the super-specialists in a couple weeks to review the
final results from some other tests. After that we will meet with the
transplant team at Jewish Hospital here in Louisville. After that meeting, they will put Marianne on
the list for a liver transplant. Since we have not yet met with the team there
is a lot we do not know, but we do know some information from things the docs
and Colin’s coworkers have said. For those of you who are not aware, God in His
providence, has Colin working at Kentucky Organ Donor Affiliates, which is the nonprofit
organization that handles organ procurement and distribution in Kentucky.
HERE
IS THE GOOD NEWS WE KNOW RIGHT NOW:
•
Marianne does not have cirrhosis, which means her liver is
functioning well. We are hopeful her liver will continue to work until we need
a transplant.
•
Marianne has very high bilirubin (one of the liver products),
which means she will likely have a high transplant score. Having a higher
transplant score means you are more likely to get a transplant sooner.
•
The US is split into several transplant districts, and we live in
one of the best districts in the country if you need a liver. When Steve Jobs
needed a liver transplant he didn’t get it in California where he lived, he
came to Memphis which is in our district because the wait was shorter.
•
We also have pretty good insurance through Marianne’s work, which
we are thankful for. We expect to incur major expenses, but insurance will
likely pay for a lot of the bills.
•
Liver transplant recipients can make a full recovery and live a
long, normal, and healthy life.
•
Jewish Hospital has excellent transplant doctors who are experts
in their field. These doctors are better experts than you may expect in a
smaller city like Louisville. Additionally, the number of transplants done at
Jewish is low compared to other transplant centers, which means we will get
more individualized attention than we probably would receive at a larger
transplant hospital in a bigger city.
•
Overall, Marianne is in pretty good health for someone needing a
transplant. She is young, has a good health history other than the liver
disease, and her diseases are weird and uncommon. All of this put together
means she has a very good chance of getting a new liver.
HERE IS THE NOT SO GOOD NEWS:
•
There are over 122,000 people waiting for an organ transplant in
America right now. That’s more folks than University of Louisville’s Cardinal
Stadium and the University of Oregon’s Autzen Stadium hold COMBINED. A lot of
them will die before they get a transplant. While we are pretty confident that
Marianne will receive a liver before getting to the point that her life is
threatened, the fact is a transplant is not certain.
•
Additionally, once we receive a transplant Marianne could reject
the new liver. About 10-15% of recipients reject the new organ. This would mean
we would need a second transplant.
•
There is also the chance Marianne’s disease could come back and
attack her new liver. Some patients do not have a reoccurrence of their disease
and others do, there is no way to know what will happen.
•
On average a liver transplant costs a little over half a million
dollars ($500,000). Again, we have good insurance but we also know we will
incur a lot of bills in this process.
HOW
ARE WE HANDLING THIS NEWS?
This
is obviously not the news we had hoped for or the outcome we had prayed for.
Despite this, God has been gracious. We do have moments of deep sadness and
depression. Most of the time though we are handling it well and feeling pretty
normal. We have hope in God in the midst of our suffering. We trust that God is
merciful, loving, wise, and in control as scripture tells us. We have trust in
God’s promises and in the Gospel as scripture tells us. We also know Job’s
whole family died, Jesus suffered and died on the cross to save us from our
sins, and no one is exempt from suffering. Things may not turn out the way we
want. Healing may not happen even if she does receive a transplant. But we both
know that this doesn’t change who God is and what He has promised. We all will
die, and whether that is in 1 year or 50 years, we know that our hope is in the
new life God has given us through the resurrection of Jesus from the dead.
We
don’t want to make our suffering seem simple or easy because it certainly is
not. We did not plan for life to turn out like this or hope to have this
happen. No one sits back making plans, goals, and dreams and then decides “I
really want to have a chronic disease and get an organ transplant." But in
the pain and suffering we do have hope in Jesus. We don’t know all the ways
this will affect our life and ministry, but we do know that God will bring good
out of this suffering. He will use this to make us more holy and bring us
closer to him and help us minister to others. While there are still times of
darkness, depression, and despair as we react to this news we know we can hope
in God. This suffering is more than we can handle (like Paul faced in 2
Corinthians 1), but God will be sufficient for us and give us the grace we need
to face the struggles we face.
HOW
CAN YOU HELP?
THE FIRST THING you can do is pray.
You can pray for wisdom, insight,
and discernment for the doctors, nurses, and all who take care of Marianne. You
can pray for a transplant and for people to sign up for the organ donor
registry. You can encourage every nurse you know to take referring potential
organ donors seriously, because it really can save someone’s life. Pray for
Colin’s coworkers at Kentucky Organ Donor Affiliates and other organ
procurement organizations. You can also pray for healing.
But
let us encourage you to see these things as the second priority for your
prayers. The first priority in your prayers for us needs to be for our
spiritual needs. Right now our biggest need is to live in light of 2
Corinthians 12. This is the passage where Paul says he prayed three times to
have the thorn in his flesh removed and God said "no." In this
passage we see that though God has said no to giving us healing, God is saying
yes to giving us Himself. Our spiritual need is to see God’s grace is all we need
and that He is sufficient for us in whatever suffering and sorrows we face
during this process of having a liver transplant. We need you to pray that we
could trust that His power is most greatly shown in weakness. We would prefer
Jesus display his power in our lives through healing, restoration, and
deliverance, rather than through sustaining us in total dependence, weakness,
and brokenness. However, at this point, we believe Jesus wants to show His
power in our life not by healing from this illness but by sustaining and
satisfying us as we go through the process of a transplant. We cling to the
hope that Jesus will make us content when we don’t have what we need, joyful
when we are overcome with sadness, and rest in the midst of exhaustion. Pray
that we would meet, know, and commune with God more deeply in this season of
suffering than we ever have before. Pray we would desire and be satisfied with
God’s presence more than we desire to be satisfied with healing.
We
need your prayers that we would respond to our suffering with belief in the
truth and rejecting Satan’s lies.
As
this process goes on we will be attacked by Satan who will attempt to destroy
our faith. Satan will attempt to leads us to turn away from God in resentment,
anger, and hopelessness. God intends to use this process of suffering to
strengthen us as we turn toward Him in dependence. Pray that we would respond
rightly. Pray this for Marianne’s family and for Colin’s family as well as they
also struggle on this journey.
The second thing you
can do to help us is to be good listeners and speakers in our journey.
We
need you to be present, to listen, and not try to fix things. We need you to
ask us questions and listen to how we are doing and expect sometimes we won’t
want to get into it and at other times we will want to get into it, and in both
responses we appreciate your caring for us. We need you to be willing to speak
the truth in love to us, remind us of what we know, and be willing to
encourage, rebuke, and help us as needed in the months and years to come. Some
of you will find this challenging and some of you won’t. Some of you will fail
at this, and when you do, God will give us the grace we need to be gracious
with your failures, so don’t avoid this challenge even if it makes you uncomfortable
and you don’t know what to do. If you don’t know how to listen well or what to
say, just be honest about it and say so and we will appreciate you. We are really thankful for the ministry of
Nancy Guthrie as we process this stuff. Her book Hearing Jesus Speak Into Your Sorrow has helped us suffer well and
we recommend you pick it up if you want to know some helpful things you can say
to us and know how to respond to suffering. Also, Colin wrote a booklet on how
to counsel individuals with chronic illness and some of you may find that
helpful to know what kinds of things would be helpful to say and not to say to
us. If you want a copy let him know and he will send it to you.
The third thing you
can do is learn from our experience.
You either have, are now, or will
suffer in your life. You may go through the same struggle or a different
struggle that leads you to suffer, but God wants you to learn from our
suffering (from what we do well and from where we fail), so you can suffer well
when your time comes.
Colin
will be preaching next Sunday night (the 28th) on Psalm 13 and
talking more about our experience as he preaches this text, you are welcome to
attend if you can.
Sincerely,
Colin
and Marianne
