Updates on Havalah

By: Kristen Date/Time: 11/9/2004 12:17:37 AM Update: Hello! We got some surprising news this week, I don't know if I would call it good news or bad news. Apparentally our GI doctor(Dr. Tolega), our surgeon (Dr. Johnson) and Staci our transplant coorinator meet once a week and talk about all of the kids on the waiting list at our center 9currently there are 4) Havalah doesn't get talked about very often because in the last year there haven't been a ton of changes. Staci brought havalah up this week to remind Dr, Johnson that there is a baby on the list, in the event an adult liver that could be split became available. Well after looking at Havalah's labs Dr. Johnson decided that Havalah should be made status 7 on the list, which means non-active. What that means is that Havalah would not currently be eligible for a liver if it became available. Here is why: Havalah's PELD has been 11 for the last 2.5 months, because at that level it only *has* to be rescored every 3 months. However with her last labs it would have went to 8, and with the labs 3 weeks before those it would have went to 7. Dr. Johnson has read a few studies that show that for pediatric patients(adults too) with a PELD of 10 or under mortality rates are higher if they have the transplant than if they don't. The reason is because with a PELD of 10 or under someoen is unlikely to die, but transplant surgery is risky enough that mortality rates are higher with transplant than without. Because of these studies adults are no longer able to be listed at all unless their MELD (same as PELD but for adults) is 10 or higher. While Havalah becomign unactive on the list seems like a big deal, it's probably not. With her PELD score being so low it's unlikely a liver would have become available anyhow. If at any time her labs become worse which results in a higher PELD score, she will be put back on the list right away. The higher your score the more likely you will be transplanted soon, and the more you need a transplant soon. So in all likelyhood this probably will not change the length of time it takes Havalah to get a transplant. So that's the scoop on that. I also wanted to mention that a friend of mine from red lobster named Ryan is in a band called Fractured. They have put out a cd called "for Havalah" and they are donating all proceeds to havalah's transplant fund. We just received the first checkl for over $400.00 from them today. You can read about them, and order the cd at www.fracturedworld.com If anyone has questions about any of this, please email me at kristennn@brokebox.com thanks!

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