Sarah Needs a Kidney

It’s on.

On Wednesday, March 16, Sarah’s IVIG treatment kicks off. And if all goes as planned, she could have a shiny new kidney by summer’s end. Lord knows we’re all ready to get this show on the road. But as I find myself telling our story to friends and coworkers, I can’t help but get tripped up as I try to explain this whole IVIG thing. I mean, I still really don’t know what it all means. So, I did a little research.

Intravenous immunoglobin (IVIG) therapy was first adapted for use in transplantation by researchers at Cedars-Sinai—the same hospital Sarah recently transferred to—and they currently hold the U.S. patent for it, too. Pretty cool stuff.

This kind of therapy is used for transplantation in patients like my sister who have “highly sensitized” immune systems, meaning their bodies are basically on high alert when anything foreign enters it. Even when it’s something good, like a life-saving organ transplant, their body can’t tell the difference.

How does it work?

IVIG is a processed form of immunoglobulin, which are proteins naturally produced within the body that are natural defenses against invading organisms. Immunoglobulin is injected into a vein to protect the patient from infection and immune diseases.

IVIG therapy reduces HLA sensitivity by adding helpful antibodies to the patient’s bloodstream. This lowers the level of HLA antibodies and blocks their ability to attack a transplanted organ. IVIG therapy can be used successfully in both adults and children seeking kidney transplants.

Unlike many anti-rejection therapies, IVIG does not suppress the entire immune system, but actually boosts the patient’s protection against infection. (Source: Cedars-Sinai)

Simply put, IVIG will trick Sarah’s body into accepting a new organ, without jeopardizing her global immune system.

But, will it work?
As with most things in the transplant world, there are no guarantees. But, according to the team at Cedars there is about a 95 percent-97 percent success rate with this baby. As far as I’m concerned, Sarah’s got this one in the bag.

It’s been a few weeks since Sarah’s big surgery and by all accounts, things went pretty well. The doctor took about 3 lbs. of water weight out of her left arm, which was basically excess drainage that had no where to go. As for the kidney transplant that almost was…well, we haven’t really talked about that. And the truth is I’m not sure if we ever will.

We talk about a lot in my family, but when it comes to some of the most important things, they often times just get swept under the rug. It reminds me of an episode of “Modern Family,” where Mitchell talks about how the Pritchett-Dunphy family sweeps so much under the rug that at some point the rug gets so lumpy they trip over it. My family has that problem.

Maybe a little spring cleaning is in order?

In some other way more exciting news, my brother passed his latest round of tests to become my sister’s living donor. You may remember that a series of fluke tests knocked him out of the running last year, which left us all a little shook up. Well, after Sarah made the decision to transfer to another transplant center, they required that a whole new set of tests be done on both her and her potential donor. We weren’t expecting much, but we were hopeful that the news would be a heckuva lot better this time around. And it was!

Now that Ian’s been cleared to donate, the next (more scary part) begins where Sarah starts the process of Intravenous immunoglobulin (IVIG), which is one of the only ways she can receive my brother’s kidney given they are not the same blood type. There are a lot of risks, and we’re not sure if it’s even going to work, but we’ve got to try it. We’ve made it this far.

Sarah is having major surgery today to fix an occlusion in her clavicle — a bad side effect of her dialysis treatment over the past couple of years.

How did I find out? Facebook.

As hard as I try to stay connected to my family and all the goings-on from 2,000 miles away, inevitably — and sometimes unbelievably — stuff just falls through the cracks.

Busy lives and missed messages aside, today’s a scary day for my family, and we won’t know if the surgery is a success until the early afternoon. It’s a waiting game, and my mom has already endured prolonged proselytizing from a lovely Lebanese man, devoured an entire novel, and shopped her way through the hospital gift shop.

UPDATE: As if today wasn’t crazy enough, some even wilder news just came through the wire: Sarah might get a kidney.

My childhood babysitter and lifelong family friend just phoned my mother that her son-in-law is currently on life support, and they want my sister to have one of his kidneys.

Those of us in this community know this feeling well: a family member’s life could be saved by the passing of another. But we also know not to get our hopes up too high.

More to come…

UPDATE: Sarah’s surgery was a success, so much so that the doctors sent her home without the anticipated three-day hospital day. And as for the kidney, well, our potential donor’s organs ended up failing before we (or any other waiting family) could even be considered for transplantation.

Clearly, I’m a huge advocate for the organ and tissue donation community. Anything I can do to help get the word out about the issue, I’m there. And anytime mainstream media shows us some love, I’m happy to ring the bell. But what I’m not a fan of is being taken advantage of. In any way. So you can imagine that when I came across kidney donation on ChicagoTribune.com this morning, I was ecstatic…until I found out what the story was really about.

photo courtesy fotologic, flickr

The piece, “Man honored for donating kidney may lose job,” makes you think it’s going to be an awful story about a guy who, after selflessly donating his kidney, was victimized by a heartless boss. How could he, right? But no, come to find out that Dan Coyne, a social worker for the city of Chicago has violated Chicago Board of Education’s residency requirement by choosing to live in Evanston. He’s lived there since he was hired back in 2002, when the residency requirement was waived, but now he’s been given notice to relocate to the city by July 31 or he’ll get kicked to the curb. Yeah, it’s a pretty crappy situation. Residency requirements are painfully controversial, but I’m not here to argue for or against them.

Here’s my beef: what’s the residency requirement have to do with Coyne donating his kidney? There’s no question that Coyne performed an amazing act of selflessness, by all accounts, and that the award he’s set to receive from CPS for his kindness is nothing but well-deserved. With a sister now on her fourth year of dialysis, and not a single family member eligible to be her living donor, I can only hope that there are more people as kind as Coyne willing to give my sister another chance at life. And it’s through spreading the word about Coyne’s generosity that this dream may become a reality for not just my family, but the thousands of other families waiting. But using Coyne’s kidney donation as a vehicle to make a case for why he should or shouldn’t be held to the residency requirement is taking advantage of the situation. It’s also bad journalism, plain and simple.

107,937 men, women and children are currently waiting for a lifesaving transplant. These people deserve to know that their stories are going to be told with truth and dignity, and not be pimped out to sensationalize an unrelated story. They’ve been through enough.

As for Coyne and his transplant recipient, Myra de la Vega, I wish them strength and continued success post-transplant. The organ donation community it rooting for you. And about that job…I’m hoping for the best.