Archive for December, 2010

27
Dec
10

“When You Come upon a Fork in the Road…….


Take It…”

Not my quote, but that of Yogi Berra. But for the next chapter of As the Liver Turns, it seems most appropriate.

I’ve been remiss keeping the blog up to date and a great deal has transpired. As you know, we went to Cleveland to get on another list to speed things up and get all of this behind us. Yes, we got on the list but the recommendation was – hold off. I attempted to garner an opinion where everyone would agree – or not. As much as these liver docs are all buddies , it is impossible to lock them in the same room to arrive at some type of consensus. I think they must discuss these cases in the men’s room between the symposium at a liver conference. Anyway, Northwestern does not agree with Cleveland on my issue. The problem is both sides are right and there is no wrong answer. So, that leaves it to the patient to figure it all out. That would be me.

In other news, we had a delightful week with the entire family, kids, and grandkids in Florida during Thanksgiving week. We rented a large house on the ocean thinking we were in the clear interrupted only by 90 day scans to make sure nothing reappeared. My meeting to compare opinions with Northwestern was on December 7, so I made sure I was prepared. Never go into a meeting where you don’t know the outcome. In generalities I talked to several of the transplant clinics around the country. Of course, all of them know and respect the team at Northwestern. I would say the opinion was about 50-50 and there is no clear consensus whether to remain in a holding pattern or go forward. The problem is there are a lot of moving parts to the equation. Trying to figure the variables becomes an art, not an exercise in mathematics. (In fact, there’s so many parts to the puzzle that Northwestern has engaged their engineering school to map the decision tree with variables with percentages in order to arrive at mathematical probabilities. Many of the liver centers around the country are doing a data dump for Northwestern to complete the project.) Every patient has a unique set of circumstances, mine just seem to be "super unique" so I don’t fall into any particular bucket with other patients.

I believe over the past six weeks I have reviewed just about every piece of medical literature that is been written on the subject. Not that I understand it all, but I know how to read percentages. There is probably a .0001% chance that I will get hit by a truck in the next five days. That’s a really good risk, unless I’m the guy who gets hit by the truck. Trying to apply math to this just isn’t prudent.

So, to set the stage I have been prepared for surgery three times. The last time being a few hours before I left for Cleveland. In all three cases, the donor liver did not pass QC . Interestingly, three offers occurred on holidays. (The Labor Day liver, the Halloween liver, and the Thanksgiving liver) and then there was a the Sunday liver, I flatly turned down until I could have my meeting with Northwestern on December 7. As of December 24th I have gained two more points on the MELD score. That places me number one for the city in my blood type at MELD-33. Due to the shortage of organs, Northwestern has never had anyone with a score as high as 33 except in an emergency situation, so I was correct when I told my high school science teacher that my 33 really was a high score on my final exam. So– here I am next on the list and healthy as a horse.

So now the question–what do I do?

I think the answer for everyone can be different. For me, it boils down to the way I run my life and my intuitive skills which I trust. We have decided to go ahead with a transplant–but only when they find the "perfect" liver. It may happen tomorrow or six month from now. At a MELD-33 I’ll have a shot at just about everything that comes my way. It is no problem for me to drop everything and take the fork in the road when I get the call. If I was to use the next 24 months is a frame of reference I would remain in the holding pattern and wait for an event. If I use 20 years as my frame reference, then I should get it done with it all behind me. For me, I’ll stick to the 20 year frame of reference and take a chance arguing with the truck, thank you very much.

The point is, I believe we could get too "cutesy” about this and one day find ourselves backed into a corner. The probability is high that "someday" I will need a liver. My style is to face the facts, determine the best course of action, and move forward with resolution. There is no reason to change the way I run my life now. I would rather deal with it today on my terms under conditions that are acceptable to me rather than be under the gun with fewer options. I equate this to an aircraft that upon take off has four hours of fuel. There are a lot of airports within four hours of the takeoff point. Two hours into the flight the circle is reduced by half. And if you plan to land with a 30 min reserve you better be over an airport if anything goes wrong. In aviation we’ve all been there – shoot an approach to minimums, miss the approach, and your alternate just went low IFR. The controller calmly says – “what are your intentions, sir”. Not a good feeling. Life is about options, and I want as many in my favor as possible in business, my life, and aviation. I guess it’s part of my DNA.

In the meantime, I can travel without my GPS activated ankle bracelet. (Joke). So, next week Nancy and I are going to DC for the swearing-in of our local Congressman. (We seem to be welcome in DC again) and the following week we are spending 4 days on the slopes with our friends Ray and Lynn at their home in Colorado.

As I told my doc at Northwestern, for being in the sh*t, it seems to be good sh*t. In my opinion, good sh*t is something from which one can be extracted. Bad sh*t, well–that’s really bad. My doc says I am not in any sh*t at all. While I’d rather not be close to any of it, I’ll take the doc at his word.

We as a family are cool with the decision. We know it is the right one, works for us, and have great confidence in the direction we are going. But as we all know, there will be more twist in turns just like Desperate Housewives. So stay tuned for the next chapter of…

As the Liver Turns