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Jan 01 2010

A Bright New Year Begins with a Perfect Match

I’ll spare you the dramatic build up and will jump straight to the punchline — About 72 hours ago I learned that I have a perfectly matching living donor for my liver transplant. I’ve officially placed my liver on notice that its time with me is short, so I’m feeling somewhat galvanized against the now-temporary symptoms that have disrupted my life for the past few years.

Now for the dramatic prequel to the story, with a few highlights for those who are new to the saga…

In September 2000 I was diagnosed with primary sclerosing cholangitis (PSC), a relatively rare liver condition that causes my bile ducts to constrict, ultimately resulting in liver failure. There is no known cause and the only treatment is a liver transplant. It’s possible to be symptom-free with PSC for years, and that was initially the case for me, but the past two years have seen a dramatic increase in my symptoms including jaundice, itching, nausea, insomnia, and the occasional bout of pancreatitis. Anyone diagnosed with PSC also faces a risk of bile duct cancer which is typically a terminal diagnosis; my mom, who also had PSC, was diagnosed with bile duct cancer in October 2006 just three days after she received a liver transplant. After a 22-month fight against the cancer, she passed away in August 2008 at the age of 64. Having witnessed firsthand her experience with the ravages of bile duct cancer, I am highly motivated to avoid that path altogether, and there has only been a single option that makes that absolute — finding a living donor.

So why not go with a deceased donor like most other liver transplant recipients? Well, it’s a matter of supply and demand. The data suggests that my wait would be upward of two-and-a-half years — far too much time for cancer to develop, and too long to endure the inevitably debilitating symptoms of PSC. As I am writing this, there are nearly 17,000 individuals awaiting a liver transplant. I formally joined that group on July 22, 2008 when I was deemed sick enough to be placed on the waiting list. From there, here’s how the numbers stack up. Of the 17,000 people on the liver transplant waiting list, fewer than 7,000 will be transplanted this year. Another 2,400 will die waiting for a liver that will never arrive. That’s 6 people a day who will die because we didn’t have enough donors to meet the demand…and that’s just for liver recipients. If you take into consideration all types of organ transplantation, 18 people die every day as a result of the shortage of available donors. That’s one person every 80 minutes. It is difficult to imagine a more needless death or one more easily preventable.

One last thing and I’ll stop preaching — please consider being an organ donor. Don’t let yourself fall in the category of those who have never considered organ donation. And by all means, don’t be the person who speaks in favor of organ donation but has never taken action. If you don’t know what your state requires to express your preference to be an organ donor, check this link. Now would be a good time to pull out your driver’s license and take a look.

Okay, so all of that was a very long answer about why I can’t be 100 percent confident that I can wait for a deceased donor — there’s simply too much “competition” for the next liver, and I might die waiting. This fact was impressed upon me by Dr. Robert Fisher, transplant surgeon and director of the liver transplant program at Virginia Commonwealth University Health System in Richmond, Virginia. Catherine and I met with him this past summer and he didn’t mince his words while explaining that I could spend years waiting for a deceased donor. In fact, the only way I could move higher on the priority list ahead of my 17,000 comrades waiting for livers would be to get much sicker. No kidding. Consequently, Dr. Fisher encouraged us to do two things. First, I needed to stop taking my medication. Next, we needed to rapidly find a living donor and treat it as a matter of life or death. Catherine immediately volunteered to be tested, but was told unequivocally that she wouldn’t make it past the first series of screenings since the transplant team prudently takes a very dim view of two patients (and in our case, parents of two young children) recovering from surgery in the same household.

So my “What I Did This Summer” essay began with (1) stopped taking the few medications I have been taking for about nine years in a deliberate effort to negatively influence my lab scores and positively influence my priority ranking on the transplant list, (2) consequently turned the Hippocratic Oath on its head, (3) experienced a resurgence of my symptoms, and (4) turned yellow and essentially stopped sleeping. Ironically, I believe these were all desired outcomes.

One other thing happened this summer, though. During a night out at dinner with another couple, Catherine and I shared the latest details and oddities of life as a prospective transplant recipient, including Dr. Fisher’s directive to find a living donor. We value this couple’s perspectives, counsel and friendship and thought they could help us think through our next steps. In the middle of the conversation, and with no fanfare whatsoever, the wife of this couple rather quietly mentioned that she’d like to be tested. In retrospect, Catherine and I both didn’t know how to appropriately respond to such an offer. Had we known then how rigorous the pre-transplant testing can be and what a small percentage of volunteers make it through the multiple layers of screening, we would have responded differently. Had we known then that even immediate blood relatives and siblings are routinely dismissed as incompatible for any of a dozen reasons, we would have responded differently. And had we known then that this person would ultimately prove to be a perfect match, we most definitely would have responded differently. But while you don’t get moments like that back, sometimes what you do get is a series of events that are so unusual, so coincidental and so extraordinary that they can be described only as the results of divine intervention.

I’ve shared bits and pieces of this story with friends, family and co-workers, but something I’ve not shared until now is the donor’s identity. Having asked for and received their permission, I’m happy to finally be able to share that my donor is Alison Baker. I met Alison through her husband Curt who was recruited to join our health system’s management team about two years ago as vice president for cancer care services. Curt and I became quick friends with several things in common: a passion for motorcycle riding, an irreverent sense of humor, and an appreciation for great music. We also both happen to be frequently recognized as card carrying members of the “Men With Wives We Don’t Deserve Club.” Now that Catherine and I have elevated Alison to “Hero” status, Curt’s lifetime membership in the club is secured. Over time I have come to realize that Alison’s quiet and dignified demeanor hides an unparalleled degree of focus and drive that, at times, have found her leading the charge toward my transplant as I dug in my heels.

Here’s how things unfolded. The day after our dinner, Alison e-mailed Catherine, again expressing her interest in going through the pre-transplant testing process and inquiring about specific next steps. Catherine provided her with the name of the living donor transplant coordinator in Richmond who conducts the first round of screening during an hour long phone interview. It’s important to note that at this stage I could accurately be described as completely uncomfortable with the prospect of a living donor. It was inconceivable to me that anyone else would be placed in harm’s way as a result of my health problem. I recall distinctly asking Catherine to talk Alison out of going any further in the process. Fortunately Catherine has a unique gift for ignoring things that I say that should be ignored. She also instinctively knew how determined Alison was to go down this path.

Alison passed the phone interview, opening the door to the next steps which involved going to the Medical College of Virginia in Richmond for several days of pre-transplant testing. It was also during this time that I began to learn about another aspect of this story. Weeks earlier, Curt and Alison had made use of my mom’s apartment in Washington, DC, which we had decided to keep following my mom’s death. Curt later explained to me that during their stay, Alison felt my mom’s presence in an unusual way. She didn’t see any apparitions, or hear voices or hear doors creak. She just felt a strong connection and wondered what its purpose was. This was before we had talked about our need for a living donor, but when that topic did come up later, Alison felt the two must be connected in some way. Learning this background information actually helped move me from being opposed to Alison as a living donor to being conflicted about it.

Next Curt and Alison traveled to Richmond to begin the testing for compatibility. This testing is not insignificant. It includes interviews with psychiatrists and a social worker. It also includes more traditional clinical exams like blood typing, tissue antigen typing, a chest x-ray, an electrocardiogram, a pulmonary function test, a cardiac stress test, an MRI, and a hepatic angiogram. The hepatic angiogram is saved for the very last test because it is an invasive procedure and there’s no reason to put a prospective donor through that test until the’ve passed the preceding tests with flying colors. Alison’s hepatic angiogram was put on hold until the transplant team could agree on whether or not the timing was right for me to move ahead with surgery, a process that added at least three months to the journey and only recently concluded with the green light (for more details on this, see my earlier posting).

During the initial round of testing, specifically during an MRI assessment, Alison and Curt were told that the matching process had probably run into a wall. The MRI had revealed an anomaly in the biliary structure of Alison’s liver. This occurred on a Friday, and the surgeon would not be available to read the scans until the following Monday, but the transplant coordinator suggested that Alison and Curt prepare themselves for the likelihood that she was no longer a match. They carried this disappointment into the weekend alone, having agreed to not share the discouraging news with us until the surgeon had been given the opportunity to weigh in with his opinion of the MRI scan. On Monday when Dr. Fisher reviewed the scan, he confirmed the presence of an anomaly in the biliary structure. However, Dr. Fisher knew something that the transplant coordinator could not have known on the prior Friday. Dr. Fisher had also reviewed my MRI scans, and therefore knew that I had a corresponding anomaly in my biliary structure, meaning that Alison was more than just a match, she was an ideal match.

This news hit me like a ton of bricks, because I was finally starting to believe that there was a larger force at work. While I can now make light of my struggle to come to terms with each phase of this story, the reality for me was considerably less amusing. Every time Alison reached another milestone in the screening process, my surgery would come one giant step closer and the risks that she would be exposing herself to became more real. Candidly, I met each of these milestones with emotional breakdowns. Sometimes these occurred quickly and quietly on the side of the bed or in my car in a parking lot. Other times they resulted in my having to be propped up emotionally by Catherine until they subsided.

My deep reluctance was not derived from lack of gratitude — far from it. In fact, it was born from an overabundance of gratitude. How could I possibly accept that the wife of a friend, and a friend herself, and the mother of a beautiful 5-year old daughter was going to volunteer to face a major surgery, face the risk of infection and a whole list of other surgical complications, and be left with a significant scar? No, this wasn’t lack of gratitude, this was my need to accept a level of gratitude that cannot be repaid. Curt’s advice to me has been very simple and direct: “You can’t repay it, so you get over it and move on.” I laughed about that when he first said it, but on further reflection, I think he may be right. I also think his advice is not far removed from the advice that I received from Randal Walton, our health system’s director of pastoral care and one of the clearest thinkers I know, who said, “Sometimes you just have to accept grace.”

I’m learning that both Curt and Randal are right, but I’m also trying to spend my time listening closely for the purpose that all of this is supposed to have in my life, and I’m trying to anticipate how it will change who I am and the manner in which am able to live my life. If divine intervention is at work here, which it seems quite clearly to be, how can I live up to what is expected of me and what I now expect of myself? This may be a lifetime’s work answering that question, but to me it starts with the basics: working to be a better, more attentive and engaged father and husband. If this process is buying me time and adding to the duration of my life, there’s no more obvious place that time should be spent than with my wife and children.

Oh, and if you’re not as convinced as I am about the impact of divine intervention, it’s only because you don’t yet know the rest of the story. Remember the hepatic angiogram that I mentioned earlier? It’s the one final hurdle to jump in the pre-transplant testing. Because it’s an invasive procedure, it is saved until the very end. Alison had this test on December 22nd, and by all accounts it was a relatively uneventful procedure. It took about another week for all the necessary parties to review the results and provide their input. Finally, in the middle of this past week the transplant coordinator contacted Alison who immediately contacted us. When the phone rang we were in the car taking the kids to the outdoor skating rink at the sculpture garden in DC that is part of the Smithsonian complex. Catherine took the call and learned from Alison that we had been given the green light to move ahead with the transplant surgery. Shortly afterward I took the phone and spoke directly to Alison who repeated the news and casually added a piece about an abdominal aneurysm that would just be taken care of at the time of the surgery. It sounded significant, but Alison downplayed it — something I’m learning is her style. About 40 minutes later the phone rang again. By now I had dropped Catherine and the kids at the skating rink and was riding circles around the Smithsonian museums unsuccessfully fighting for a parking space. This time Curt was on the other end of the phone with a more detailed understanding of this aneurysm since he had just received more information from the transplant coordinator who called a second time. He explained that Alison had a splenic artery aneurysm which had been an incidental discovery as part of the hepatic angiogram. He further explained that without the hepatic angiogram, this aneurysm probably would not have been found. Although only about 10 percent of splenic artery aneurysms burst spontaneously, once they do burst they carry a 90 percent mortality rate. As Curt put it, “”Hey man, you know it’s just possible that this whole thing saved Alison’s life.”

And so I have come to believe that divine intervention has played a role here. But before I give full credit to a higher force, it’s important to me to recognize that this all started with an individual act of selflessness and bravery when Alison raised her hand at dinner and asked to be tested. That choice was hers and hers alone, and Catherine and I will be forever grateful that she took that step.

There are still several more steps to go, not the least of which is the aneurysm repair which has now been moved up to January 7th. Oh, and then there’s the little matter of the actual transplant surgery which could occur as early as the end of January and that I’m confident will have its share of challenges. No matter what surprises remain in store, it seems perfectly fitting that we rang in the New Year with the Bakers. 2010 is already looking better.

25 comments

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  1. Laurel & Tim Columbus

    Bill & Catherine, we can’t tell you how thrilled we are to hear this great news, this is what we’ve been praying for. We will certainly be praying for Alison’s aneurysm surgery and for all of you as you head into the transplant surgery. Please let us know if there is anything we can do to help.

    1. Natalie Trost

      Bill,

      Thank you for sharing your incredible story! We are so touched by all that you have endured and by Allison’s ambition and strength to help. We will certainly keep in touch with Catherine on your progress. You are both in our thoughts so much of the time, and now with news of your story, we will continue to pray for you and your family. From what we know of Allison and Curt, we are not at all surprised by Allison’s willingness to step in and help in this way. She is one of the most giving persons we’ve ever met! Our two dear friends, we pray for you both now, on transplant day, and in the recovery days ahead…We are so very thankful you all found each other in this journey. Please let us know how we can help you, Catherine, Allison and Curt in any way – we are happy to help with food, kids, school, anything at all!
      All our love and prayers,

      Randy and Natalie Trost

  2. Bill & Joyce Miller

    Bill, we are so glad to hear of your news. It sounds as though Teresa has been looking out for you from above. We will bwe thinking of you as your time of surgery draws near. Please ask your Dad to let us know how it goes.

  3. Michele Patarino

    Hi Bill – We haven’t met (yet-I hope to fix that soon!) but I’ve been thinking about you so much since Catherine invited me to read your blog a few weeks ago. I pulled out my wedding albums and looked at pictures of Cath, looked at the videos of your beautiful kids, and just couldn’t believe that this story could end in any way other than a happy ending. And what wonderful news for the new year. My love and prayers and best wishes to all of you. Michele

  4. Julie Salmon

    Bill, Your story (and Alison’s too) has brought tears to my eyes. I am so happy for you and wish you the best of luck with the upcoming surgery and recovery.

  5. Amanda Darling-Thompson

    Bill and Catherine, Congratulations on reaching this pivotal part of your journey. It’s certainly been a long, and no doubt stressful, road; your family, friends and mere acquaintances are so thrilled to learn of this news and absolutely share in the excitement of what 2009 brought, and more so what 2010 has in store. Best of luck to you both, as well as to Alison and Curt (both exceptional people as well…).
    Sincerely, Amanda Darling-Thompson

  6. Kerry Mossler

    Thanks for sharing this beautiful story. I am so thankful for angels like Alison. Both of your families are at the top of my prayer list.

  7. Lisa Nickelson

    Bill, Catherine and Alison –
    First to Bill and Catherine; my prayers and greatest happiness are with you both. May you have a long, healthy and happy life. This indeed is the blessed start to many more Happy New Years!
    To Alison; you are a very brave and selfless person. My hopes and prayers lay with you as well in that you also are safe and healthy for many years to come. God indeed put Angels on this earth!

  8. Cindi

    Caryn and I just read the fantastic news! Wow!…..that sums it up! For us, we are thrilled for our precious Jules and what this means for her. Of course we love your entire family, but Julia has a special place in our hearts. Our prayers for her have been answered. Keep us updated.

  9. Georgianna Corsini

    This is truly an amazing story. The hand of God is obviously on you all, and you will be in our prayers as you continue this journey.

    Alison is my new neighbor… we’ll help in any way we can, Alison!

  10. Beth Colling

    Bill and Catherine,
    Kent and I are so excited, happy, thrilled, ecstatic for you both! Happy New Year, indeed. You will be in our thoughts and prayers. Please, please, let us know if we can help with the kids – jack and dani would love to have playmates ANY time. I don’t know Alison, but I love her already. Thank you, Alison, for showing everyone that angels do walk among us.

  11. Catherine Mosley

    Bill and Catherine, This is wonderful news and thank you for sharing your very personal story. It allows all of us to take a step back and realize what is most important.

    Allyson, Thank you for your bravery and best wishes to both of you for a seamless procedure and recovery! Catherine, Mike and Luke Mosley

  12. Sally Brown

    Hi Bill! Tim just forwarded this to me. I’m so happy for you! I know you have a lot to go through, as does Alison, as does your beautiful family, but you’re surrounded by good folks and us legions in the outfield wishing you all the best. Congratulations! Sally

  13. Stacey Hurn

    Bill, Catherine, Kids, and Alison,
    I am brought to tears that you have by divine intervention, have been given this chance to live! I don’t even know how to go about thanking Alison, but thanks none the less. Somehow I know your mom’s sweet presence is and will be beside you every step of the way. My thoughts and prayers will be there too!

  14. Ashley Blanchard

    Bill and Catherine, I always like to read the last page of a book first to see how a story ends…. as you can imagine I like the happy ones best and tonight, your blog brings great joy as it is wonderful news! Congrats! Bill you are a fabulous writer and I appreciate you sharing your journey. I know you still have far to go but my thoughts and prayers are with you as well as with Alison. 2010 will certainly be a year to remember.

  15. Rita Watkins

    Bill –

    Stacey called to tell me your news this morning, and I am so happy! I will be following you through the blog and Stacey, and all our pryers are with you.

    We still tell stories about your ISS days when I get together with Lantrip and Lusco.

  16. Rebecca Humphrey

    Bill, I have been following your journal since we first spoke this summer. When our call was cancelled this morning I decided to look at the journal to see if you had found a donor. I am so happy for you and your family and your wonderful friend Alison. Everything happens for a reason. I wish you the best moving forward and will keep you in my prayers.

  17. Debbie Weil, author of The Corporate Blogging Book

    Bill,

    When you’re up and about again, you’ve got your next project: this is a book. What an amazing story.

  18. Ken Burger

    Yes, Bill, there is a God who is very actively engaged in living this life and whose grace is more abundant than any of us conceive. Randal is right: sometimes we just have to accept grace, and that means accepting the gifts that come our way and accepting our role as the earthen vessels through which gifts are passed on to others. There is healing going on here, in many levels, and more in store for everyone involved. You, my friend, are a gift in this flow of life that God is trying to direct.

  19. Karen Simonton

    Bill

    I knew you were heading for a transplant but I had no idea about this journey. God speed. Grace and peace to you, Alison and all of your families. Warm regards, k

  20. Nancy Weaver

    Bill and Catherine,

    Your courage and grace are such an inspiration to us all. Thank you so much for sharing your journey.

    Nancy Weaver

  21. Amy and Will Sandidge

    Bill and Catherine,
    Thank you for sharing this amazing story. It is a great example of God’s love and grace. All of you continue to be in our thoughts and prayers as you continue this incredible journey. Both families are a true inspiration.

    Amy and Will Sandidge

  22. Rosemary

    Dear Bill,
    My cousin, Mary Simonetta, shared your blog with me. What an amazing story! I wish you and Alison the very best and will keep you in my prayers. Sounds like her journey to become a donor with you as a recipient was one of God’s “coincidences!” God bless and keep you both. Rosemary

  23. Carole

    Alison is a special person. I’m not surprised that she offered to share herself with you in such a special way. Yours is an incredible story and I wish you both all the best.

  24. Ken Burger

    Bill, I want you to know that you and Alison are on another list. This one is the prayer group at The Summit, consisting of 6 residents who meet each week in our chapel and together lift prayers of all nature. What that really means is that at least 6 people — more likely the number is closer to 80 people knowing how this community works — who have spent a good 75 years talking to God are now each having conversations with the Creator about your healing. Imagine something like this: “Now listen here, God. You and I have been on speaking terms for 75 years, which is a long time for me. There is a man named Bill and a woman named Alison who are undergoing live transplant surgery next Monday. I want you to make sure everything goes well and both of them heal completely, successfully and rapidly because they are both good people and we need them here. Thank you, Heavenly Father, for looking after this for me.”

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