NephCure Advocacy Day | The NephCure Walk

Yesterday was NephCure Advocacy Day for those affected by FSGS and Nephrotic Syndrome so I think it's a good time to share a little about our experience, bring awareness to these devastating kidney diseases.

My daughter was diagnosed with FSGS (scarring of kidney filters) in February 2008 at the age of 12. This was such a shock since she had no outward symptoms. During her annual physical examination in November 2007, high levels of protein were detected in her urine through a routine test at her pediatrician's office. After more sophisticated tests eliminated possible causes for her protein loss, she underwent a kidney biopsy which confirmed FSGS and which also showed signs of collapsible FSGS, the most aggressive form of FSGS.

The letter she wrote in a Letters For Life campaign for The NephCure Foundation

When we got the diagnosis, we didn't immediately comprehend the severity of the disease. Her nephrologist was calm; the news didn't sink in right away. He told us what medicine she would need and to start a reduced-sodium diet immediately. We were given a prescription and a packet with dietary instructions. It wasn't until we started researching FSGS on the internet later that night that we panicked and made an emergency call to him. We were back in his office the next day asking a ton of questions. He still seemed calm and was reassuring. Of course, we sought a second opinion from another nephrologist at The Children's Hospital in Boston. He wasn't as calm or reassuring. He told us she'd likely need a kidney transplant in about two years, basing his opinion on statistical knowledge and from her biopsy report, and he'd place her on steroids. The drive home was emotional. To hold back tears and avoid upsetting our daughter even more, we couldn't look at each other during the hour ride home.

We ultimately decided to continue treatment with her first nephrologist. It was just intuition. We liked his personality and his conservative approach made sense because, while her proteinuria was severe and, yes, her kidneys were scarring, she did not present with other nephrotic symptoms to treat. Of course, treatment would change if her condition didn't. The nephrologist at Children's would have immediately placed her on steroids which I didn't think she needed and neither did her first nephrologist. Turns out that we were right and spared her the side affects, discomfort, pain, and embarrassment of steroid treatment. This is not to say that this is the protocol for others; the disease and its treatment are different for everyone. That is one reason it's so frustrating.

Thankfully, my daughter responded immediately to medication: Prograf (tracrolimus), to suppress her immune system, and Lisinopril, to lower her blood pressure. When her cholesterol spiked, she was placed on Lipitor. Soon, her bloodwork showed remarkable results and she was on her way to clinical remission. She is still in clinical remission today. We are slowly weaning her off Prograf, and again, with remarkable results. We couldn't be more blessed. But each time that we are scheduled to visit her nephrologist, we hold our breath.

We now know why her nephrologist was calm. Aside from how she presented, he believed we caught the disease early. The routine protein screen at her pediatrician's office was critical in early detection.

Many others affected by FSGS and Nephrotic Syndrome are not so blessed:

And, when a patient with FSGS 
receives a kidney transplant

the disease 
often attacks the new kidney, 
A teenage boy's personal story, here.

Taking Steps To Find A Cure
Why do we walk? We'll be walking for a cure, to raise awareness of FSGS and Nephrotic Syndrome, and to support this amazing organization which is a very important part of our family's life. Who is The NephCure Foundation? It is an organization made up of "patients, parents, siblings, aunts, uncles, grandparents, friends and relatives . . . Who are we? We are you.", founder Lou Antosh, including doctors and scientists. Also, the NephCure Foundation is the only organization committed exclusively to finding a cure for FSGS and Nephrotic Syndrome.

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Her brother's science project in 6th grade about FSGS

Her dad, helping with another science project, has never removed his band

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Of Interest

A personal story that was posted on the Huffington Post yesterday for NephCure Advocacy Day, "My New Kidney"

A video explaining FSGS and Nephrotic Syndrome and their medical challenges, Here.

Kids' Choice Vegetable Quesadillas | Meatless Monday

Last Monday we enjoyed these quesadillas for dinner. They were quick and easy to make and the kids enjoyed picking out some of the veggies. Just about any combination of vegetables can be used. Our combination came mostly from what was on hand that day. I shopped for a few items and I used up the last of my garden tomatoes and green peppers.

Preheat the oven to 350 degrees with two baking sheets inside.  Grab veggies of your choice and start chopping.

For these quesadillas, I chopped
1 red bell pepper, 
1 small green bell pepper, 
1 medium tomato, 
1 Anaheim chile, 
1 head of broccoli,
a handful of fresh cilantro.

I decided that 1 cup of corn would make a nice addition.

About 1 tablespoon of olive oil was added to a large skillet over medium heat and the vegetables were sautéed a few minutes, just enough to make them soft but not mushy, with about 1/8 teaspoon of chipotle powder for a little smokey flavor.

When the vegetables were done, I stirred in the cilantro, turned off the heat and let the vegetables sit in the skillet while shredding a block of cheddar. I placed 4 flour tortillas on the two preheated baking sheets and sprinkled a small amount of cheese over each tortilla.

Next, the vegetables were evenly spooned onto each tortilla, then more cheese.

They went into the preheated oven and cooked for about 10 minutes, until the cheese melted and the tortillas were crisp. Uh oh, it's getting late and that means bad photography lighting.

The quesadillas were cut into quarters, topped with a dollop of sour cream and a little garnish of left over chopped cilantro.

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When I was organizing my old recipe clippings a few weeks ago, I was inspired by Martha Holmberg's Farmers' Market Quesadillas in Fine Cooking Magazine, August/September 2007, which can also be found here.

Beautiful Filet Beans and Fresh Local Cod

So it's over . . .

. . . Summer and outdoor farmers' markets.

I'll miss the farmers' markets and farm stands. It was a great season with a lot more farmers' markets making shopping a lot more convenient.

Or, maybe, I was just more aware of them. I saw signs everywhere. Farmers' markets and farm stands were ubiquitous it seemed.

Since I have a vegetable garden, I was always looking for different vegetables, preserved goods, baked goods, cheese, eggs, and meat. And there were plenty of options to choose from. Mostly, I enjoyed interacting with proud farmers and vendors who were more than happy to talk about their products.

While the experience is wonderful, in truth, it isn't easy in the beginning with respect to cooking. Meals are new and different, but so amazingly fresh and simple. I'm thankful that my family was open-minded and patient. I wish I could have shared more through my blog but I took a little blog vacation over the summer. And trips to farmers' markets or farm stands can take time, unless you're lucky enough to live near one. This year they weren't far from us and the more I asked and researched the more I found.

The experience was also educational with each visit exposing me to new local vegetable varieties, flowers, products, ideas, or even art.

I especially liked asking farmers how to prepare vegetables that I'm not familiar with. Most recipes are simple, like roasting these long beans in olive oil, sometimes I was instructed to enjoy it "raw!", and a fisherman I met had copies of his favorite recipes to take home.

I hope everyone gets a chance to visit a farmers' market even if it's just once in a while. The emotional connection between food and farmer has such a presence that it's palpable, almost as edible as the food itself! And everyone is happy and enjoying themselves, whether there's entertainment or not.

In addition to farmers' markets, I visited a few farms where I also purchased meats, cheeses, and eggs.

Meadowstone Farm

The dairy fridge. They also have vegetables and meat on site but we were all set with those.

A small purchase yet local, fresh, and delicious.

Another favorite of mine is this community-run farm. I stopped by the other day to pick up a few fresh tomatoes since my garden has stopped producing them - how I'm lamenting the end of tomato season!

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Beautiful Beans And Fresh Cod

These beautiful beans caught my eye one day and the farmer told me he likes to saute them in a little olive oil. Seemed simple enough so I picked up a batch and got to work, but I had a few more ingredients in mind.

With about two cups of shelled filet beans (tongue of fire) I started by sauteing the beans in a little extra virgin olive oil over a medium-low heat for about 10 minutes.

When they started to get soft, I added 1 shredded carrot, a diced 1/2 red pepper, 1 minced shallot, and 1 minced garlic. Covered the pot and simmered about 20 minutes. (It was taking longer than I expected to tenderize the beans. Next time, I would boil the beans a little first to tenderize them, then saute with vegetables.)

Just before serving, I reheated and stirred in chopped fresh tomatoes and parsley until the tomatoes softened a little. Added pepper to taste.

Baked Fresh Cod
This wonderful fresh cod came from a local fishery.

To make the crumb topping, I ground 1/4 cup unsalted whole almonds and 1 tablespoon melted butter into a fine crumb in a food processor. Then I added 1 teaspoon paprika, a dash of pepper, and 1/2 cup breadcrumbs (Buttered crackers could be used, a flavor my kids like, but I didn't have any on hand. I tried these gluten-free crumbs, and they were pretty good!).

I spread more melted butter, about 1 tablespoon, over the fish and topped with the crumb mixture. Finished by squeezing a little lemon all over and baked in a preheated 350 degree oven for about 10-15 minutes.

Mustard Vinaigrette: this was a simple whisked blend of about 1/4 cup extra virgin olive oil, 2 tablespoons white balsamic vinegar, a squeeze of lemon, a teaspoon whole grain mustard, and a sprinkle of pepper. I topped the salad off with about a half teaspoon of the whole grain mustard because I like the way it looks and I just love the flavor.

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To Be Continued
With farmers' markets and stands closing soon and my kids' busy schedules, I'll try my best to visit winter farmers' markets in my effort to continue supporting local producers and keeping fresh food on our family table. And when at the supermarket, I'll look for local first.

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Locally made relish over locally made hot dogs, organic whole-wheat roll, grilled garden zucchini, leftover beans from a neighbor.

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Going local philosophy that I like at Local Works Marketplace at WREN in Bethlehem, NH.