Who is Bilirubin and why is he messing with me?

I now have an envelope stuffed with my liver disease records from all the way back to 2005 when it was discovered. It’s a lot of paper. Most of it makes no sense to me. But other parts of it are clear. I have to bring it to the doctor at Lahey Clinic Monday.

It’s weird how seeing things in writing makes you give them more weight. I felt awesome Thursday. It made me upbeat and positive thinking, “Hey, maybe things are good now.”

Then I looked through my records. I saw that something called Bilirubin was 1.2 back in 2005. By 2008 it was 2.5 and then I turned to last week and saw 4.0. What’s normal? 0.7-1.2. What’s bilirubin? It’s the stuff that turns people yellow. Yellow is bad.

I read assessments and saw words like “progressing” and “end-stage” and “disease.” I don’t like those words much. I don’t like “bilirubin” and “cirrhosis” at all.

I should have just left the envelope unopened. I didn’t.

Friday and today I’ve felt nauseous. Honestly, I don’t know if I really am nauseous or just sick at the confirmation of doctors’ words in black and white. I’m nervous about Monday. I don’t want to go through this stuff.

Maybe I need to stop reading liver stuff and just pick up a Grisham novel to read as an escape. Maybe I need a strategy Xbox game that I can solve. Somehow, I bet the Grisham book I’d choose would be about a transplant case and big business and the Xbox game would have liver-shaped bombs hidden in the levels. I’m tired of it. Just tired. And yet, there is a very, very long road ahead.

Today my cousins Rick and Brenda spent the afternoon visiting with me. My friend Josh Maclearn spent the morning visiting. (He’s lost 70 pounds and looks GREAT!) It was a great distraction from my liver world.

People are awesome. We are blown away by their love for us. Visits, cards, emails, blog posts. As things have grown tight, the Lord has blessed us through people. Why does it surprise us every time the Lord provides? We’ve opened cards with money, people have brought food (even though I have to have low sodium) and yesterday we were blessed with a $100 Hannaford gift card to help with groceries. Our fridge is full, our mortgage is paid. Being on the receiving end of help is one of the most difficult aspects of this health challenge for me. I don’t like being weak or being in need. I like to give.

Monday we are dropping the price on our home again. I pray that God allows us to sell. This is far too much house for us. We have lived richly and been blessed. Please pray for a buyer with us.

Also, if you know anyone who needs web design or a website, please refer them to me. Designing websites is a great way for me to add some funds to the family budget because I can work on them from home.

So, that’s where I am right now. Discouraged. Nervous. Weak. Blessed. Thankful.

Jesus didn’t come back today. If He did, I’d have a brand new liver right now. Maybe it will be tomorrow? I do know that the idea of a heaven with no more pain is much more attractive to me now than it was just a month ago. Life can change in an instant.

Be joyful in hope, patient in affliction, faithful in prayer. Rom. 12:12 NIV

My Facebook transplant awareness page is approaching 300. Please visit http://www.facebook.com/liver4scott and choose LIKE at the top if you are on FB and haven’t done it yet.

About Scott Linscott

Living life to the fullest, walking in the dust of my Rabbi, creating art through photography and written word, speaking words of hope wherever and whenever the opportunity arises.
This entry was posted in change, Christianity, chronic illness, discouragement, facing death, Fatty Liver Disease, hope, Jesus, Lahey Clinic, love, ministry, NASH, organ donation, transplant and tagged , , , , , , , . Bookmark the permalink.

6 Responses to Who is Bilirubin and why is he messing with me?

  1. Gary says:

    Strangely encouraging, pal. My journey is slower and longer, but the clarity of your condition and your situation–physical and spiritual awareness–is a nice place marker for me. I’m saving these. Adding you to my Walk About prayer sheet.

  2. Hal Cushing says:

    A bit ‘disappointed’ that the rapture did not happen today. We all would have new bodies, would walk on streets of gold, be united with loved ones, and see Jesus face to face. I know that it will happen sooner or later. Still looking forward to another day, even if things are not great. May God give you a good night.

  3. Thanks for the encouragement, Michelle. I’ve been thinking of getting back into the freelance writing game. I wrote for several publications years ago. I have to find a copy of the Writers Market book that I used back then which gave me all the submission guidelines and contact information.

    No more reading records! Got it.

    The doctor’s name? Maybe she was just having a bad day. I’ll pass on making that public. 🙂

  4. Dave&Cheryl Whitten says:

    Scott, Alissa Messer our daughter has been keeping us up to date and passing on your blog. I need to bring you into our home. Walked the house sdale route in Michigan for 5 years, just selling June10…so I’m qualifier to pray this one through with you. My brother-in-law and his son both have used Leighe Clinic, very top draw group/hospital. HE gives us the best. Praying for Monday as we walk with the King….in the meantime, let’s worship the King of Kings together tomorrow. Blessings, Godspeed,
    Dave W.

  5. michele sawyer says:

    Scott, first of all, you are a fantastic writer. Maybe you could make extra money from writing articles or copywriting services. You’d be great. BTW, I’m also a graphic designer.

    I live in orlando and I believe that your sister has forwarded you a few of my emails. On may 5, 2009, I was diagosed with end stage liver disease at the age of 48.

    I’ve been following your blog for the last few days, and I feel like I’m going back in time as I read your words. Speaking of billirubin, at one point mine was over 7.0. I can’t even speak to you regarding nausea. I feel sick remembering that part of it all. And Reading your medical records is a no no — Don’t read them! In july 2009, a doctor wrote a note in my records, which he then gave me a copy of to give to another doctor, which of course I read. The note said for him to call my father and recommend that they call hospice because I was near the end. Boy was he wrong. Here I am post transplant almost 2 years later.

    Keep a positive attitude and make sure you laugh everyday. My way of making me laugh each was to play tricks on your nurses or caretakers. It was a lot of fun for me.

    Have a great night of laying in bed not sleeping again tonight. Ha ha. My problem was I slept all day and was awake at night. I got pretty good playing computer games. Scrabble was a favorite. Just kidding about you not sleeping tonight. I hope you sleep well.

    Michele sawyer
    Fyi..I’m dying to know the name of that doctor you saw in orlando. My transplant was done within 9 months of being diagnosed at fl hsp on princeton. The docs their were awesome.

  6. aunt Betty says:

    it is very scary to read about our liver problems. I did read it all when I first got it. I don’t really read alot about it any more. I gave it to God and ask for help as he feels .

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