Archive for November, 2010


News We Did Not Expect….

This is been one of the most amazing weeks of my life. We knew this would be a journey, that there would be twisting turns, but we did not expect the events of this past week.

In our last chapter of As the Liver Turns the saga continued….

We were frustrated with the short supply of livers in the Midwest. It was our desire to get the transplant completed and behind us. About three months ago I was number one on the Chicago liver list.  On Labor Day they thought they found a liver. I was prepped for surgery but it was a false alarm. Simply stated, the donor liver did not pass quality control. (flow check issue).  Since then I had been called in for yet another false alarm. Then,over a 60 day timeframe I dropped from number one on the transplant list down to seven. So, about three weeks ago in frustration I contacted some other liver centers in the Midwest so I could be  “dual listed”. That is, I would continue on the list in Chicago but retain positioning on another list at a transplant at another Center of Excellence. I was determined to get the transplant behind us!

I talked to several centers, and found most were experiencing a shortage for the year. It is supply and demand in its purest form. Cleveland Clinic was the exception. I have used the CCF for a executive physical in the past. Obviously, it is a worldwide renowned institution as is Northwestern.  Cleveland had a very short list so we made arrangements to be at the clinic early Monday morning. We had planned a 3:30 PM departure on Sunday with Nancy and Laurie.


That very same day–Sunday, November 1–we received a call from Northwestern that they had a liver for me. It was a surprising call for us because we thought I was number seven on the list. But over the week for whatever reasons I had moved up on the list. In this business nothing is predictable. So, by 7 AM Sunday we were at Northwestern and prepped for surgery for the third time. By noon we found out that the donor liver again did not pass the quality check so at noon they sent us home. By 4 PM we were in the air for our scheduled appointment in Cleveland Monday morning….

While waiting for a liver I have been on a 90 day scan schedule. That is, every 90 days I would receive a CT or MRI scan to see if any tumors reappeared. My 90 day scan was due, so it was completed at Cleveland Monday morning. The results were as expected, and everything was clear. Our meeting that followed with the liver team blew us away. The chief at the liver Center said “I am going to tell you something you are not expecting to hear”. Our jaws dropped in unison….

The liver team at CCF did not recommend a transplant.

CCF went on to explain that had I come to Cleveland Clinic for the initial diagnosis, they would have perfomed the same protocol as Northwestern. The only difference being that I would’ve already had a brand-new (actually slightly used) liver installed and I would have been on my way months ago. As in Chicago I would have received the intra-arterial administration of Yttrium-90 TheraSphere treatment. (They said my  results of this treatment where in the upper 5% of effectiveness) For whatever reasons I was on the waitlist for an abnormally long amount of time. But after 12 months they looked at the situation from anew giving their interpretation of the painted picture. On Friday the liver gods convened their board meeting, discussed my case, and came out recommending that I should not consider a transplant anytime soon. My blood work is very good, my liver profiles are only slightly elevated, I have a normally functioning liver and I do not have any other health problems. So, in their opinion there is no reason to transplant. One Doc went as far to say that I should just pretend that I never had a tumor, although I think that is a rather liberal opinion.

Bottom line is that it could come back in two years, five years, or not at all. But I am on a 90 day scan schedule we can catch it quickly and deal with it. It’s not like I’m going to wake up one morning and suddenly have a liver tumor. They cannot conceive a situation where if I needed a liver that I could not obtain one.  My concern is criteria for transplant could change leaving me out in the cold. But, who knows what the protocol will be with medical advancements over the years to come. Conceivably it is a bullet I could dodge indefinitely, but only the big guy upstairs knows for sure.

Like any industry or discipline, the renowned liver docs have a close relationship with each other around the country. I told the chief in Cleveland I wanted to lock their team in a room with the Chicago guys and for them to send white smoke out under the door when they picked the new Pope and came to a consensus on my case. It would be nice if and Cleveland and Chicago were in total agreement . I will push for consensus and see what disagreements present themselves in the debate. Then we can discuss and debate the disagreements, if any. While I expect consensus it is not certain . Whether they agree or not, Cleveland makes more sense to me and as the course I will follow.

It is human nature whether you are talking business strategy, a commitment to a political direction, or a country’s position at a time of war. Leaders commit to a strategy and direction and it is sometimes difficult to stop to and reassess or re-examine the decision tree based on new information and the value of time. There are infinite views of any picture. Personally, I am guilty of that, sometimes we don’t watch, look and listen before we cross the railroad tracks. And I am the one that usually ask the most questions! (He who has the most questions is always in control of the dialogue) Professional discussion and discourse is a very good thing and a most healthy environment. Discussion of the discourse will drive consensus.  And if there isn’t a complete consensus the differences are fully understood in a professional setting. No single person holds the patent on ideas. And when you get a lot of smart people in a room the group can usually arrive at the best solution to any problem unless groupthink prevails. Rarely is there a right and wrong, black or white, and you’ve got to look at the shades of differences.

I am a firm believer that things happen for a reason.  Our life has a plan. Sometimes I am disappointed at the outcome of the events but rarely do I find myself upset. There is a reason, but sometimes it just doesn’t jump out at us. Now is the time for us to examine the “why” and do something about it. My friends, our church, My business partners and associates and our community at St. Norbert College have been at our families side every step of the way. So if there is a reason for all of this it is time for self-examination and our interpretation as to why this is in God’s plan. There is a reason why I went from being on a gurney with an IV ready for surgery to — “Stop the process! The red phone is ringing and it’s the Governor!”

So, I am removing the ankle bracelet and no longer find myself tethered. I have been asked how much pressure I have been under. My answer is that I really do not know but give me a couple of weeks to decompress and we can discuss that differential. Over Thanksgiving we as a family will all go someplace together and celebrate. Life is a gift and we should all treat it that way.

But for me it doesn’t stop there. There isn’t a whole lot of data out there in cases such as mine. I seem to be “special”. I believe there has been some research in the EU and I intend to find it. I’ve got someone who is a medical researcher to search. And then next week I will drive for consensus between Cleveland and Chicago.

Yes, the saga will continue as it does in the life of every individual. None of us know where it takes us but we all realize it is part of a bigger plan. And there is always another chapter in…

As the Liver Turns