Sarah Needs a Kidney

Sarah starts the first round of her IVIG treatment today.

Wish us luck!

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.

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.

I’m happy to report that Sarah is out of the hospital and back home resting. The doctors were never able to figure out exactly what was going on, other than that they knew it started from the scab she wouldn’t leave alone. Awesome.

The idea that my sister put herself in the hospital did not sit well with my mother, as you can imagine. With 27 years of lengthy hospital visits under her belt, anytime trips like this can be avoided, she’d like that to be the case. I think we’re all there with her on that one.

Sarah visits the vascular surgeon Monday, who will hopefully provide more insight into the inner workings of her infected fistula arm.

I’ll keep you updated.

So last week’s infection, which awarded Sarah a swollen arm and a hospital visit, was not swayed by a round of antibiotics: her arm is huge, her fever is high and her attitude is percolating.

You see, a good friend of Sarah’s is getting married this weekend and she had already made plans to make the 8-hour drive up north to attend the wedding. Nothing is getting in her way; enormous arm, doctor’s orders, and a pleading mother be damned. Sarah is going.

I get it. She is excited to get dressed up, cry at the ceremony, dance with friends and eat lots of cake. But at this moment, I am not amused.

I am frustrated that Sarah is not willing to take control of her life and get the help she needs. The infection is bad, and it’s only going to get worse. The doctors want to help, my mother wants to help, and I want to help. But all this help goes to shit when Sarah pushes it aside for fleeting weekend getaways.