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Feb 01 2010

We Have A Date

First things first: About a week ago, Alison was informed that her blood work and ultrasound exam both showed that she had recovered fully from the aneurysm repair. It’s obviously an understatement to call that welcome news, so we can all start breathing again.

Next stop: the transplant. I’ve stared at this screen for several minutes now, and admit that I have to swallow hard while I type the following words…the transplant is scheduled for Monday, February 15th, 2010. With the move from concept to actuality, I’ve also transitioned nicely from confident to, well, uh…chicken. It seems that I have a bottomless reserve of anxieties to call upon, many of which have chosen to visit me over the past several days while we’ve narrowed in on the date. I have to keep reminding myself not only that this is the day that I’ve been anticipating for nearly a decade, but also that I couldn’t have asked for things to go any better if I had scripted it myself: I have a perfectly matching donor who has volunteered to do something extraordinary, I have a surgical team that is second-to-none with living donor transplants and in whom we have 100 percent confidence, I have a wife who supports me in more ways than I can count, and I have an awe-inspiring network of family and friends, all of whom are prepared to take up the slack while I can’t during the next few weeks and months. All of these things make me one of the most fortunate people around.

I’m not always the type to look for symbolism and profound messages in everyday details of life, but I did look up February 15th to see if there’s any significance to the date, and I found something I like. February 15th is the birth date of Galileo, father of modern astronomy. Although he’s not credited with inventing the telescope, he is recognized for significantly improving on the original design and for tilting it toward the sky and gaining a better understanding of our place in the universe (Note: based on everything I’ve read recently, saying that Galileo “improved upon” the original telescope is a little like saying Bill Gates and Steve Jobs “improved upon” the original Smith-Corona typewriter. His telescopes completely revolutioned earlier spyglasses). He was among a very short list of scientists who offered supporting evidence that the Sun, not the Earth, was the center of the universe — a theory which got him promptly “unfriended” from the Roman Catholic Church’s Facebook page and even thrown into jail in 1633. Careful not to make a snap reversal, the Church formally apologized for this error 359 years later in 1992.

Galileo taught us that there are things out there that we may not understand as well as we believe we do. He taught us to look at our world differently and to reassess our position in it. He looked through two pieces of misshapen glass and turned science, religion, astronomy and philosophy on their heads.

Two weeks from today as I’m being wheeled into the operating room, I hope I’ve got the presence of mind to invoke a little of Galileo’s spirit and face whatever unknowns lie before me during and after the surgery. I have no idea what the other side looks like, but I remain optimistic that it’s good. I also think this is all about far more than just a physical transformation — it’s about looking at the world with a new set of eyes. There’s no telling what I may discover about myself, and I can only add to the long list of discoveries that I’ve already experienced about our capacity to support, care for and help one another. I’ve seen, and benefited from, the incredible generosity of the human spirit. I’m looking forward to my recovery, not just because I’ll feel better, but because I can finally start to pass that generosity forward.

9 comments

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  1. Stephen Moegling

    We’re thinking of you and praying for a speedy recovery!

    – Your pals at Franklin Street

  2. Kerry Mossler

    Thinking and praying for you, your donor, your families, your physicians. You are really an inspiration to us all.

    -Kerry

  3. Stacey

    How truly amazing life can be. Best of luck. Thoughts and prayers to everyone surrounding you during this amazing and inspiring journey.
    Stacey

  4. Bonnie

    My thoughts and prayers are with you, your family and everyone involved in this.

    Bonnie
    (from Barnes & Noble reading time with my grandkids Sky & Hunter.

  5. Joyce & Bill Miller

    Bill, We will be thinking about you, Catherine, and Alison during these times before, during and after the surgery. As you know, your Dad is a long-time friend and so are you, We love you both. Please let us know, or let him know, if there is anything we can do to help in any way. Our thoughts and prayers are with you.

  6. Laureen

    I believe completely that you can drop all anxiety over the transplant operation. God has his eye on you and has orchestrated this for both you and Alison. A few weeks ago, a couple contacted me and let me know the husband, Al, had been diagnosed with PSC. In prayer, I asked God if wanted me to know something for Al. In response, I heard, “beetlejuice.” I did some surfing to find a connection and not finding much except that a red juice is made from a red beetle’s wings and used for removing warts. I sent the information to Al and said I hadn’t done a thorough job of investigating it. A week or so later, while deleting e-mails, I saw Al’s wife’s e-mail again and tried one more web search using
    “sclerosing cholangitis, beetle juice,” and found your site. I had no idea beetle juice would be Betelgeuse, a red star. God knows just how to get people where he wants them. God knows your heart, your thoughts and every iota about you. I tell people, he knows your thoughts tomorrow. He has shown me this is true by showing me a day ahead what I will see tomorrow. Nevertheless, I contacted Al and Sharon and shared the link to your journal. They were quite amazed. As God is doing this for you, he is doing something for Al and Sharon too. He is preparing them with information they need. One last thing, God says my people perish for lack of knowledge. I don’t know your faith, but God’s love letter to us is the Bible and to understand it we need to ask him to give us His Holy Spirit so we can make sense of it. He is looking at you and listening. And he answers. Yeahmen…Yeah and Amen

  7. Al Paulsen

    Bill, Thank you so much for sharing the amazing story of your experience with PSC. Your blog is very informative and inspiring. The generosity and human spirit displayed in your writing has already made a difference in my life. I was recently diagnosed with PSC and I’ve been trying to wrap my mind around what that really means. My web searches on the subject disclosed a lot of technical information regarding the disease. But, it was your blog that helped me really make sense out of what I have been going through. I am the “Al” that Laureen mentioned in her February 6, note to you that you posted on your site. Laureen and her husband are long time friends of ours. She came across your site on January 25th, and notified me that day. A little background: I recently turned 67. I was first diagnosed with ulcerative colitis in 1971. The symptoms waxed and waned periodically since then. In the early 1990’s, my gastroenterologists expressed concern that I may eventually have to deal with PSC. Symptomatically it did not show up until 2007, when ulcerative colitis flared again. This time symptoms of PSC also became evident. I underwent two ERCP’s for exploration and removal of sludge and some bile duct stones. No stones were found in my gall bladder, only in the common bile duct. Once again, symptoms subsided until July 2009. Then, like a bolt out of the blue, without any unusual symptoms, I spiked a fever with rigors and went to the local hospital emergency room. That night my temperature went to 104.7 degrees. After a battery of tests, and imaging procedures I underwent another ERCP. The clogged common bile duct had caused a severe blood infection. No stones were found. After three more days in the hospital, I was discharged and encouraged to see a surgeon about getting my gall bladder removed. I was skeptical about that recommendation and sought a second opinion with the liver experts at Swedish Medical Center in Seattle. Gall bladder removal was immediately ruled out and PSC became the most likely cause of my infection. After two more short bouts with blood infections that were stopped quickly with antibiotics, I underwent a 45 minute ERCP for investigation, cell samples and installation of a common bile duct stent. Three weeks later, a follow-up MRCP confirmed PSC . Yesterday I underwent a 90 minute ERCP for removal of the old stent and installation of a larger one. I don’t know where this journey with PSC will take me. Taking it a step at a time, I consider it just another path on my journey on Earth and part of the price I must pay to live a longer life than three of my grandparents. When I read your latest posting I found it remarkable that you mentioned Galileo and a reference to “spyglasses.” After yesterday’s ERCP my doctor wrote on the discharge instructions findings: “The ERCP and spyglass exam went well.” I’m sure Galileo would be delighted to know that his work not only expanded our knowledge of our universe, but in some way may have also enabled exploration of our human internal mysteries as well. We often go through life without realizing how much we touch other’s lives. You have touched my life in a very special way. Thank you for the courage and clarity with which you have shared your experience with the ravages of PSC. That it has brought new meaning to your life is priceless. And what you have brought to others through your story is a blessing that is immeasurable! The thoughts and prayers of my wife Sharon, and I, will be with of you and Alison, and your families, as you undergo your surgery on February 15th and throughout your recovery. By the way, Sharon’s father’s birthday is also February 15th. It is going to be a blessed day!

  8. Julie Larkin

    Bill,
    You, Catherine, Julia and Will will be in our prayers next week. If there’s any way we can help while you guys are in town please let us know. We have some extra rooms and lots of kid-friendly fun!
    Julie and Jerry Larkin

  9. Jen Staton

    Hi Bill! You, Catherine, Julia, and Mr. Will are in our hearts this Valentines Day for sure! Wishing you and Alison the best tomorrow! Please let us know if you all need anything at all!

    Michael, Jen, Kate, and Emily Staton

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