Tried, Tested and True

I've asked my cousin Kate, the remarkable daughter of a remarkable woman, to write her story for Tried, Tested and True, an event being hosted by the mother-daughter team of giz and psychgrad over at Equal Opportunity Kitchen to raise awareness for organ donation.

When I asked Kate to write this I also asked her for a healthy recipe. She responded with a rather pithy response too fabulous not to quote here for a terrific dish which Jack cooked last night:

"I hate that healthy low-fat shit.  I love food very much, and I'm sure I would love to eat someone else's healthy low-fat recipe if they served it to me, but I don't think or cook that way because good food is generally healthy and if you want low fat, don't eat cake all the time.  So, I want to offer up my friend Nicola's recipe as served to me in Asmara, Eritrean (former Italian colony).  It's just good old bon filet (do we call it filet here?  The long skinny tenderest cut of beef?) cut thickly and fried lightly in a few good glugs of olive oil with lots of salt and pepper til just past rare.  Throw those lovely rounds on a platter and top with an armload of rucola, and then drip the nice hot salty and peppery and beefy olive oil over the top.  It looks and tastes great.  It's all healthy stuff, right?"

Right, indeed. We just loved this simple and yet oh-so-good dish. It proves once again that if you start with great ingredients you can't go wrong.

Please welcome Kate and her story.

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I had a kidney transplant in July 2005 at the age of 42.  Aside from what could be detected through blood tests, my symptoms of kidney failure as a result of Polycystic Kidney Disease were virtually non-existent the summer day in 2004 my nephrologist told me, “You could be eligible for a kidney transplant tomorrow.”

Since I live overseas I wasn’t able to get on a donor list in my state of Colorado: you need to be able to get to the hospital within 12 hours after a kidney becomes available and travel time to the states takes us more than 30 hours.  I would need to find a living donor—someone willing to donate me a kidney, and willing to do it during my scheduled trip to the States! 

I looked ahead to Christmas or even the following summer to do the transplant.  If my health held (and it did, sort of) that would give me time to find a donor who would be willing to come to Colorado and donate a kidney.  I love telling the story of the people who came forward to offer me a kidney: five relatives, several friends, and even a few people I hardly knew. 

My Mom suggested right away that she could be my donor; my nephrologist dismissed the idea just as quickly, saying we wanted to look for someone younger.

My sister-in-law Tammy leapt forward immediately with certainty and even joy at the prospect of donating a kidney.  I still marvel at the no-nonsense way she would not brook our concern or dismay on her behalf.  Her doctors gave her the go-ahead, and my doctors told her to wait until closer to the actual transplant date to proceed with testing.  With those provisions we proceeded through the year with a kind of peace of mind, and that was Tammy’s gift to us.

Ten months later we learned that I had a pretty high level of antibodies—protein substances the body's immune system develops in response to antigens, or foreign substances.  Antibodies will attack a transplanted organ, so the most important test for potential donors and recipients is an antibody screen, a simple test that mixes the white blood cells of the donor with serum from the recipient.  If the antibodies in the recipient react with the antigens of the donor, the deal is off.   

Suddenly, Tammy was no longer a potential donor.  While my husband Craig and I turned our attention to trying to find a match in the increasingly short window of time ahead, Tammy grieved.  She experienced a real sense of loss over not being able to donate her kidney, God love her, and I don’t know if I’ll ever be able to thank her adequately for the whole-hearted commitment she gave to the prospect. 

In the meantime, Craig’s older brother who stands over six and a half feet tall and weighs around 260 pounds offered me one of his kidneys.  His concern: “they’ll probably have to stuff it inside you like a rubber raft.” 

Craig’s younger brother also offered a kidney, but based on the results from the antibody screen with Tammy, the transplant team felt that Craig’s blood relatives were out of the picture as the high level of antibodies in my blood had likely developed during pregnancy against antigens from Craig. 

As news of our having to cast a wider net for potential donors spread, Mom gently reminded me that she was ready to give me a kidney.  Aside from the fact that my nephrologist had dismissed Mom as “too old” (though at 65 she could ride her mountain bike downhill faster than anybody we knew and ski more aggressively than most people half her age),  we didn’t even know what her blood type was.  Would it be a match?

“Match, schmatch.  Doesn’t matter.  I’m the one.  Tell your doctor to test me,” mom insisted.  She even called my nephrologist herself, and was told that she might be considered as a last resort.

My cousin Lisa heard the news, and though we hadn’t seen each other for more than 25 years, she offered to donate a kidney and went right to her doctor to get tested.  Her results were in Colorado within a few days and though she was not a match, she arrived in Colorado days later to reconnect and offer support. 

We were running out of potential donors.  My energy had been fading for a few months, and by summer 2005 was operating at the level of a Soviet brown-out—with just barely enough light to read by.  Friends around the world stood by ready to send the necessary blood tests, but the doctors felt chances were slim that I’d find a match.  They finally agreed to test my mother. 

“Because she’s older, the kidney might not last as long as a younger donor’s would,” the doctors warned. 

“When you’re done with it, they’ll be able to give it to someone else!” Mom retorted.

We looked into a portable dialysis machine, one that I could use during the night at home in Jakarta if I wasn’t able to get a transplant this summer. 

Mom got tested and sent her results back to my doctors.  She was a perfect match.

When I called to tell her, she screamed as if she’d just won a million dollars in the lottery.  Her joy, her complete gladness, still makes me cry.

Now it was time to get going in earnest.  Mom flew over the next day.  When I greeted her at the airport I told her she didn’t have to give me a kidney just because she was the only match we’d found. 

She took my face in her hands and said firmly, “Honey, I would give you my heart.”

The battery of tests began.  Mom had to get another complete physical.  She got an MRI, more blood tests.  The results showed her to be an ideal donor for me.  That week my nephrologist told me she’d been at a cocktail party with some of her colleagues, who commented that Mom’s kidneys were as healthy as those of a fifty year-old, rather than a sixty-five year old.  A couple of tests and days later, they announced that her kidneys were on a par with healthy thirty year-old kidneys! 

Mom’s glad confidence never wavered.  The day of the transplant we laughed over our immodest surgery gowns.  I thanked her, again.  We held hands as we wheeled on our gurneys down the hall, waved and said we loved each other as we split into different rooms.

And here we are back in the states for summer, three years later.  Mom hustled us down the trail at the end of our five-mile hike this evening.  This morning she showed me pictures from her last annual week-long bike trip with her girl friends.  Six women wearing bike helmets and wind jackets lean together and grin at the camera.  Their ages range from 50 through 73 and they’re all tough as nails. 

I turned 45 last week.  I’m so grateful.  Forty-five feels like a perfectly wonderful age, and I’m so looking forward to this year, and to all my years. 

During the process of searching for a viable donor, my family and I felt utterly buoyed up by the loving self-sacrifice of all the dear people who offered me a kidney.  I talked about the process constantly, and random acquaintances began to express interest in becoming donors, from my dentist’s assistant to friends of friends. 

There are dozens of websites dedicated to providing information about becoming an organ donor.  Others describe the process of becoming a living kidney donor.  All of them overflow with stories of gratitude from recipients and families of recipients whose lives were saved. 

Comments

[frenchtart]

i have mascara running down my face, and i have to run to the bathroom across the hall through a sea of Suits to wipe it off. this is by far the most touching story i've read in a while, the best damn thing i've heard all week. it's things like this that make you realize we live in a truly great world and life isn't so bad after all, even when shit hits the fan. your cousin is blessed to have so many loving family members and friends.

[Bellini Valli]

This is a very moving and personal story...thank you so much for sharing:D I was so moved by the story I had to go back to see what you had made:D

[martina]

Thank you for your inspiration! My brother has been waiting for a kidney so long now 6 years.. I read your story and have been given renewed hope!
Martina

[bee]

what a heart-warming story. thank you for sharing it with us.