Unbreak the Baby

Last weekend Amy, Eliana and I went to see a program by Rabbi Charles Sherman, author of the book “The Broken and the Whole.”

Rabbi Sherman’s 4-year-old son, Eyal, went from a rambunctious youngster to having a brain stem tumor to a vegetative coma to a quadriplegic within the course of a year or two.  Eyal is now 33, and though he’s spent 25+ years wheelchair-bound and unable to speak he’s also graduated high school and college (B.A. in Fine Arts from Syracuse).  It’s an amazing story.

Much of Eyal’s extraordinary progress has been possible because of the Shermans’ optimism and focus, and the immense work they all put into helping him live his life.  One comment from the program that wasn’t in the book (I don’t think) stuck with me.  To paraphrase:  Families of children with special needs work every day to make the extraordinary into the ordinary.

There’s no truer expression of that idea than the simple fact that we were able to attend the event with Eliana.  Tubes tucked away, feeding pump running discreetly — to someone who didn’t know her complex medical history she might have looked like just some cute kid with a bit of a drooling problem.  Our lives are far from “normal” (whatever that is), but for those two hours we made it all look positively ordinary.

Which brings me to another extraordinary thing I’m going to try to make seem ordinary.

Wanna donate a kidney?

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The doctors have spoken, and Eliana is now eligible for a transplant.

Some statistics:  As of September 4, 2014, in the United States 101,170 people needed a kidney transplant, and on average, nearly 3,000 people are added to the list each month. Twelve people die every day awaiting a transplant.

There are two ways we can proceed – a deceased donor (“The List“) or a living donor.  Simply put, a kidney from a living donor is better; they tend to work better, last longer, and require fewer anti-rejection medications than deceased donor transplants.

In 2013 there were 5,733 transplants from living donors and 11,163 from deceased donors.  Hershey Medical Center transplanted 18 kidneys from living donors last year.  The majority of living donors are relatives, but many unrelated donors donate to friends or community members, and some even to complete strangers.

I can’t donate because of some of my health issues and medications.  Amy’s going through the testing and may be a good match, but … sheesh … Eliana’s care needs will ramp up for the weeks and months after the surgery, so having Amy out of commission for several weeks at the same time might just push us over the edge.

So…would you consider donating a kidney?

Anyone over age 18 can become a living donor. Testing requires blood tests, urine tests, and a full day physical evaluation, which can be done through Hershey Medical Center (they may be able to arrange for some or all of it do be done elsewhere if you’re not from the area).  Even if you’re not a good match for Eliana you could consider Paired Donation, in which your kidney is matched to another recipient with an unmatched donor whose kidney is then given to Eliana.

Let’s be honest: even thinking about a commitment like this isn’t easy.  Though the procedure isn’t uncommon, there’s always a medical risk with any surgery.  With a recovery time of 4-8 weeks donors will miss some work (and possibly income) and will have to rearrange their own lives for awhile.  Most medical costs are paid by the recipient’s insurance, and other costs (like missed work or certain incidental expenses) can sometimes be partially reimbursed in other ways, but there’s often at least some financial impact to the donor.

These sorts of conversations aren’t easy.  It’s hard to ask (yes…even for me…) and even harder to be asked.  The good news is that through the power of modern technology we don’t actually have to have that awkward face-to-face conversation – though of course Amy & I always willing to chat and answer questions if you want.

Do your online research, and if you’re so moved call Hershey Medical Center to ask about the next steps. Tell ‘em Eliana sent you. (Seriously…they need to know that part.)  Bottom line: if there are some possible donors in the pipeline in the next few weeks we’ll hold off and see what happens.  If not, we’ll move forward with the next steps and see where it leads us. No expectations, no obligations, no uncomfortable mumbling or odd non-sequiturs on the phone or in the hall.

So please take some time to consider donation.  It’s an extraordinary gift that would allow Eliana a chance at an ordinary life.