Author: Chris
Our goal for 2017: Get Porter a new liver.
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| Love your liver! |
Today, Porter is officially on the liver transplant list. This "list" is officially managed by the
United Network for Organ Sharing (UNOS). There are a few variables that UNOS takes into account when deciding who on the list is a suitable candidate for organs that become available. The order of recipients on the list is a main factor, but geographic region, type and status of the organ, and some other variables also affect who gets an organ. This process is called "organ matching."
Click
HERE to learn more about how UNOS matches organs to recipients. The real magic comes from a program called
DonorNet. This is a computer network that uses algorithms and recipient data to quickly and efficiently analyze donor organ availability and organ matching.
Its algorithms match the organs of those who’ve just died to those who are on the waiting list, and they are constantly being revamped, even as they handle more and more traffic. Last year [2014], those algorithms facilitated 24,980 transplants — up nearly 9 percent from 2013. -PBS News Hour
Porter's listing includes our chosen clinic, Boston Children's Hospital. So, when a liver becomes available for Porter, UNOS will contact BCH and then we will get a phone call from Boston.
While our current transplant plan includes a liver from a deceased donor, our Vermont and Boston teams are also helping us consider a live donation. This would mean that a live person would donate a portion of their liver to Porter. Next of kin is highly favored. Porter and Sarah both have A neg blood. I have O neg, and although for transfusions O neg is the universal donor, Sarah is the better blood match. But, Sarah may be a carrier for the OTC condition. OTC is a dominant condition, so being a carrier technically shouldn't result in the metabolic defect. But, this gene is on the X chromosome, and sex chromosome genes can sometime be expressed in unpredictable ways. There are multiple cases of female OTC carriers expressing the defect. If Sarah is a carrier, she cannot donate. In order to determine if she is a carrier or not, we arranged for a genetic sequencing test. We are still waiting on the results, but if Sarah is not a carrier, then she would be a great candidate for the live donation. This would mean no phone call. We would just schedule the paired surgeries. But, I'm having a hard enough time envisioning my son on the operating table. I'm not sure how I would do with Sarah in surgery simultaneously.
Now comes the waiting game. We hope we have timed Porter's listing well and that he will be able to be transplanted this summer when both Sarah and I are out of work.
