Our Story

Motorcycle camping in Hot Springs, North CarolinaMy name is Bill Varner, and I live in Lynchburg, Virginia with my incredible wife, Catherine, and two awesome kids, Will (7) and Julia (10). In September, 2000 I was diagnosed with a liver condition called Primary Sclerosing Cholangitis (PSC).

PSC is a condition that causes the bile ducts of the liver to constrict severely. As a result, bile does not flow as easily through the liver as it does in a healthy individual. Ultimately this causes bile to spill into the bloodstream and significant scarring to occur throughout the liver. There is no known cause for PSC and no real treatment, other than a liver transplant. Although PSC is not generally considered to be hereditary, there are instances of it within families; my mom had PSC and died in August 2008 from cholangiocarcinoma (bile duct cancer), a known risk of PSC.

Until about four years ago I had been almost entirely symptom-free. That changed suddenly, and I have outlined the experience of wrestling with my symptoms in more detail throughout the blog. With the onset of symptoms, I started having stents placed into my bile ducts in order to keep them open. This proved to be a temporary solution, which eventually became ineffective when the tiny microscopic ducts that can’t be stented began closing. At this point, there was little that could be done to control the progression of the disease.

I was formally placed on the transplant list on Tuesday, July 22nd, 2009. Exactly seven months later, I received the transplant that would save my life and dramatically improve the quality of each day. My donor, a hero in every conceivable sense of the word, made all of this possible, but probably not in the way you’re accustomed to when you think of an liver donor.

But the transplant is just the beginning of the story; none of us could have possibly known that the real challenges remained ahead of us. As I healed during that Summer, counting my blessings, awash in the overwhelming outpouring of love and support, my family and I never expected that our future would teach us more than we ever thought imaginable about the fragility of life, the power of loss, and the seemingly endless capacity for human beings to take care of one another in challenging times.

I knew when I began this journey that it would change my life. But I had no idea how many ways it would change it, and how differently I would come to view the world, my friends, my co-workers, the power of prayer, and the very real ability that we have to save lives every day when the power of medical technology meets the generosity and faith of individuals and communities.

8 comments

1 ping

Skip to comment form

  1. Kathy Hines

    What a great picture of you! Catherine shared your blog with me when she was in the office this week and I was very interested to read about your journey. I think of you so often and wonder about your progress with the PSC. Now it is nice to know that I can keep up with you through your blog! You are such a lovely person and have such a remarkable attitude about this whole journey. The pictures of your mother are beautiful! Thank you for sharing your story with us all. God bless you and your wonderful family.
    Kathy Hines
    Dental Hygienist

  2. BJ McGraw

    Hello Bill & Catherine,

    I’d jotted the site name down when speaking with Catherine before the holidays and ran across it as I was cleaning my desk in prep for the new year — thought I’d check out the jelly bean adventure — which I enjoyed immensly! — I didn’t realize that I was going to a blog about your experience with PSC. I admire your manner of dealing with the disease and appreciate your openness. Prayers are with you all and keep enjoying those jelly bean experiences!

    Happy New Year, BJ

  3. Sharon

    Hi,
    I was referred to your blog by Mary Simonetta Smith. She’s kept us posted on your situation. Just want to say best of luck to you and your family. Your success gives hope and courage to others.
    Praying for your speedy recovery.

  4. Holly

    Hi Bill, Thx for writing about your experience. My mother has PBC & due to advancing symptoms & risk level but a Meld of only 12-13 she was encouraged to find a Living donor. We are beginning the preliminary testing & are considering MCV as the transplant ctr. I am curoius to know how you & your donor are doing now. I hope you are doing so well that you don’t have time to update your web page 🙂

  5. Lacil Fund

    An inpirational story

  6. Ted

    Thanks for keeping this blog online… I’m 49, and I’ve had PSC for 10+ years and am being followed by the folks at MCV (I also ride, and really dig your Honda ST …is it an 1100 or a 1300?). Don’t know why I never came across this blog before; but I’m glad to have it as a reference. You’re a fine writer, incidentally! Hope you continue to be in good shape at 2+ years past transplant.

    cheers,
    ted

  7. Mallory

    I just found your blog and I have to say your story is inspiring. I am 26 and need a heart/liver transplant. It is comforting to hear how other people cope and show such courage. Thanks for sharing your story.
    Mallory
    http://transplantlifeasweknowit.blogspot.com/

  8. Leslie

    Hi Bill,
    I came across your blog today by accident while researching PBC. My cross to bear. You give hope and encourgement and I thank you.

    Also, I couldn’t help but notice today is your one year anniversary post transplant. I hope and pray all is well with you and Happy Anniversary.

    Leslie

Leave a Reply to Holly Cancel reply

Your email address will not be published. Required fields are marked *