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Mar 21 2009

Things Start Getting Real

Dr. Luketic finally called me back with the results of my lab work from March 11th. Rather than just leaving a message on my cell phone telling me exactly what the labs looked like, which he has frequently done in the past, he asked me to give him a call back. This alone put my anxiety level on “Standby” status. So I called him back immediately and the news wasn’t what I wanted to hear. My liver enzymes were elevated considerably. Now, when I hear something like that, a part of me actually experiences some relief, since it at least offers some explanation for why I’ve felt so miserable lately. But from a longer term perspective this was alarming news, since for the last several years my lab results have been just marginally out of the normal range, and haven’t always seemed to be correlated with the ups and downs of how I’ve been feeling. This lab work definitely marks a turn in my condition. Dr. Luketic went on to say that my liver currently has no dominant stricture (which it has had in the past) and that the elevated labs appear to be the result of the more diffuse strictures that are present throughout. This is discouraging since the dominant strictures have proven themselves to be manageable with endoscopically placed stents, while the diffuse strictures will continue to cause deterioration of my liver because they are basically “untreatable” — a word no one wants in their medical vocabulary. If I had been in the mood to play “Let’s Be Careful With Our Adjectives” with Dr. Luketic, I would have suggested “unrepairable” over “untreatable” since my liver, just like a broken window pane, can’t be “repaired” but it can definitely be “replaced.”

Dr. Luketic seemed to know where my mind was already, and switched gears to the topic of the transplant. This part requires a brief education on the concept of MELD scores. MELD stands for “Model for End-Stage Liver Disease” and is a quick measure for determining the degree of a liver patient’s illness. This becomes a critical measure because it can help determine the degree of urgency for being formally placed on a transplant list and the degree of priority for being allocated a donor liver. Here’s what Dr. Luketic explained about each level of the MELD score:

SCORE WHAT DOES IT MEAN?
0-10

Too early to really determine anything meaningful from the score.

15

At the Medical College of Virginia (MCV), once patients hit 15, you are evaluated for readiness to be on a transplant list. Assuming the evaluation goes well, you are then placed on a list.

25

The stage most transplant patients have reached at MCV when they receive their transplant.

35

Too late to be a viable transplant candidate.

40

Dead

 

During my appointment in January 2009, I was at a 10. During my visit a week ago, my score had elevated to a 12. Ordinarily, although this is not positive news, it would not be cause for significant alarm because I’m still at a relatively low score and not nearly as ill as some of the people with whom I share waiting room space during our quarterly visits to the Hume-Lee Transplant Center in Richmond. But Dr. Luketic had two things on his mind. First, he was concerned that the score had changed two points in so short a period. This could potentially be a new trajectory in the progression of my condition. Second, he acknowledged that his judgment was probably being unduly influenced by a patient he had just seen whose score was at 12 three months ago, and who just today is at 30. In other words, he wasn’t feeling comfortable taking any chances with a “Wait and See” approach. Neither was I, so we both quickly agreed that although I was not yet at the threshhold level (a 15) for the transplant evaluation process, we should go ahead and initiate that process. If things continue to decline as rapidly as they have over the past month, I’ll already have the evaluation behind me and can be listed right away. If things slow down, it would be necessary to update some of the tests from time to time. Without hesitation, I agreed that I wanted to go through the full pre-transplant workup ASAP.

Dr. Luketic then said, “I know this is a lot to take in, and it’s a very serious decision to be making late on a Friday afternoon when you just learned of this five minutes ago, so if you want to take some time to think about it, this can wait a few days.” It wasn’t until then that I realized a couple things. First, for the past two years since my mom’s transplant, I have always had the perspective that I wanted to be transplanted as soon as possible. Other than the liver condition, I’m in good shape, and it seems obvious to me that a relatively healthy body will have a better transplant outcome than one nearer to death. That philosophy has resulted in my being eager to move things along as quickly as possible, so when I was asked about the possibility of doing the pre-transplant workup and getting listed, I heard my mouth say “yes” since it had rehearsed its lines well and delivered them on cue when we moved from dress rehearsal to live performance. The rest of me wasn’t so sure, but decided to stand behind my mouth’s boldness. After all, there appeared to be no realistic alternative.

The other thing that I was just realizing, and this is a lesson that should be firmly committed to memory in order to avoid repeating, is that a phone call of this nature should not take place on a cell phone while sitting alone in the car parked in the driveway. I had returned Dr. Luketic’s call on the drive home from work, and suddenly found myself idling in the driveway, staring at the back yard. Life-altering news deserves an audience, or at least a safety net, and all of mine were in the house, barely visible through the glare on the kitchen window, so I hung up the phone and took the twenty steps to the door — my first steps as someone acknowledged to be dangerously ill. My first steps as someone who could no longer delude himself about the possibility of avoiding a transplant. Ah, a little of the molasses legs with some tunnel vision thrown in for added effect. So, through the kitchen door I go, and I’m immediately met with, “Dad, we’re going to the movie. Can I PLEEEAASSE get a treat?” Nothing like an entry from a six-year-old’sList of Life’s Biggest Concerns” to help you downshift into the world of more mundane matters. It also helped me realize that it was a fine time to have a treat.

So we did.

2 comments

  1. Sue Nielsen

    Greetings from Australia. Just read your 2007 blog re itching. I had a bad bout a couple of years ago and the only thing that relieved it was Phenergan (promethazine)
    Background -I was diagnosed with PSC in 2002 but being over 60 am unlikely to get a transplant.Fortunately both the PSC and associative Ulcerative Colitis have been pretty quiet for the last couple of years. Recently had stent from major bile duct temporarily removed (after 5 years of 3 montly replacements.) I check PSC on clinical trials.com regularly and so am currently taking large doses of UDCA (prescribed) and DHA (over the counter) – both subjects of US trials. Exchanging info is useful. Good luck with the transplant programme.

  2. Bill Varner

    Thanks for your post, Sue. I’m not familiar with the transplant protocol in Australia, but was surprised to hear that a 60-year-old would be unlikely to get a transplant. My mother also had PSC and was transplanted at 63. Unfortunately, she subsequently died from cholangiocarcinoma this past August, but the transplant bought her at least two more years of life.

    I appreciate the input about phenergan. I’ll add that to my arsenal of things to try for the itching. Right now, cholestyramine seems to keep things relatively under control, but I’m always interested in more options.

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