A Few Updates From This Week

Sandy became just too miserable—itching, jaundice, sleeplessness, and accelerating discomfort everywhere made it necessary to address the stents. She was a real champ in holding out as long as she did, but we decided to swap them out to try to give her some relief.

Replacing the stents is a double edged sword. On one hand, it restores flow so that the bilirubin level can go down, which in turn reduces the itching and other discomforts. On the other hand, this reduction in bilirubin also reduces her MELD score, which in turn lowers her position on the transplant list. To mitigate this, we scheduled a new blood draw immediately preceding the stent replacement. This gave new blood results with the highest possible levels. The new results can be used to determine her MELD score and placement on the list for thirty days.

The procedure was done on Tuesday (2/6/07) and Drs. Kalloo and Bascaglia were able to deploy two (2) 12cm stents that seemed to restore flow in the ducts. They observed what may have been a mild infection during the procedure, which seemed to progress immediately on Wednesday and Thursday. Sandy’s temperature did rise, but not all that dramatically. She seemed to spiral downhill rapidly on Wednesday and Thursday, losing nearly all energy and developing severe nausea. The Drs. prescribed oral antibiotics to address the infection, of course, and we can already see the difference, barely 24 hours later.

You may be interested to know what her MELD score is now. When first listed about a month ago, her bilirubin was at a mere 5.2 and her MELD score was 13. For reference, the normal range for bilirubin is 0.1-1.2. When updated two weeks later, her bilirubin had soared to 16.9, resulting in a MELD score of 17. The new blood results from Tuesday revealed bili at 27.5, and resulted in an adjustment of her MELD to 19. This is very, very encouraging!

I should probably note that it is the progression of PSC, and not the advancement of cancer cells, that is causing the progression of problems that the stents are meant to address. We still believe that the cancer has been eradicated from the lymph nodes and the primary tumors on the bile ducts remain at bay.

In other news, I spoke with Dr. Malley today. Dr. Malley is the head of transplantation at Hopkins and is responsible for leading Sandy’s care at this point. He remarked that he is surprised that the wait has gone this long, and he is encouraged by her new MELD score. With her blood type (AB), a score of 19 would seem to invite offers from all over the country. So, we’re optimistic that this could still go very quickly.

“Trust Allah, but tie your camel.”

There is an old Persian proverb—a favorite of mine—that says, “Trust Allah, but tie your camel.” So, though we are all optimistic about her chances of getting a suitable cadaver liver soon, we’re pushing the issue of live donation, as well. Sandy’s sister, Beth, has remained steadfast in her offer to donate a portion of her liver. Beth will be visiting Sandy for a few days next week and Hopkins will attempt to conduct the evaluations while she is here. At least this way we will know where we stand with Beth as a potential donor and will presumably have that available as a fully qualified option. It just does not seem to make sense to ignore this option if Beth is a suitable donor.

Keep the STAY STRONG SANDY items coming!