Sarah Needs a Kidney

A long overdue update

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When I last left you guys, Sarah had just started her IVIG treatments. Everything started out OK, but then things kind of just fell apart. Her body wasn’t reacting very well to the treatments. Her platelets were too low. Her antibodies were too high. The stars just weren’t aligned. So they canceled the surgery.

I had a flight booked to fly out to California — one I had already rescheduled three times. My brother had mentally and physically prepared for the donation process. And my mother, oh my wonderful mother, her prayers were finally going to be answered.

There’s no use in fighting the whys and the hows on this one. We tried, and things just didn’t work out. But we’re not giving up hope.

The doctors aren’t too confident that my brother is a good match anymore, and even after another round or two of IVIG treatments, Sarah’s antibodies are just no match for Ian (or myself). So we’re moving forward with new candidates. My dad is getting tested again. He was tested years ago, and even though high blood pressure and cholesterol issues were enough to knock him out then, doctors are confident those are small potatoes if he’s a good enough match otherwise. We’ll see.

If not, it’s back to the drawing board.


Written by Gabrielle Tompkins

July 22, 2011 at 9:19 pm

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It’s on!

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Sarah starts the first round of her IVIG treatment today.

Wish us luck!

Written by Gabrielle Tompkins

March 17, 2011 at 12:19 am

What is IVIG?

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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.

Written by Gabrielle Tompkins

March 1, 2011 at 2:26 am

We’re all in this together

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I said I wanted to do more, and the time has come to stop talking and start doing.

Tuesday was the first meeting of the National Kidney Foundation of Illinois Young Professionals, which is a cool group of young kids like me getting together to raise $, educate, network and host events.

And Wednesday was my long-awaited volunteer orientation with the lovely team at Donate Life Illinois. I have a long history with DLI, having worked on the PR and social media side of things with them during my first year out of grad school. I met some incredible people along the way, fell in love with the organization and really understood what it was like to believe in something. I know why I fight for organ donation, but knowing the stories of countless of others keeps me going when times get tough.

The way I see it, Sarah’s search for a kidney doesn’t start and end at transplantation. We’re all in this together, and I want to share it with as many people as possible.

So what do you say, do you want to join me?

Written by Gabrielle Tompkins

February 10, 2011 at 11:24 pm

Lumpy Rugs

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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.

Written by Gabrielle Tompkins

February 4, 2011 at 9:09 pm

She Always Did Like to Wear Her Heart on Her Sleeve

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What better way to show your love for organ donation than to wrap yourself up in all its glory? While it may not be for everyone, there’s no denying The Lady Cartoonist (a.k.a. Meredith Scheff) has got some serious sewing chops. Bravo!

Written by Gabrielle Tompkins

January 25, 2011 at 9:38 pm

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Surgery For My Sister (According to Facebook)

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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.

Written by Gabrielle Tompkins

January 5, 2011 at 10:19 pm