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.

Chicken, Bean, Vegetable Soup And National Kidney Awareness Month

March is National Kidney Awareness Month.  So why did I tie this soup to National Kidney Awareness Month? Because I made it for my daughter the other day when she didn't feel well. Several hours after getting a fever, she was in excruciating pain with an earache and it wasn't long before we were driving her to urgent care. She has FSGS, a chronic severe kidney disease. Thankfully, she is in clinical remission (with medication). But whenever she gets this sick I worry about relapse.

Ear infections worry me the most because she was diagnosed with FSGS three years ago shortly after she had a horrible, resistant ear infection. Doctors don't know what causes FSGS and don't know if the ear infection had anything to do with it. When there isn't an underlying disease, they believe FSGS is auto-immune based. Naturally, when she was first diagnosed I was searching for answers. I remember thinking, maybe, that infection derailed her immune system.

It also happens to be World Kidney Day. So before I forget about this basic but healthy soup I made the other day, I thought I'd share it today. After all, her kidney disease is mostly the reason for starting my blog. It changed the way we think about food. Food was the only way I could help her other than making sure she took her medicine. We always ate well - I love to cook. But I admit we had some processed foods around. Now, we try darn hard to eat mostly organic fresh food every day. It isn't easy. The food I make doesn't always look fancy. But we are surely nourished.

To make this chicken soup, I broiled chicken thighs in the oven until done.  I broiled it because if I boiled it, the stock would have been fatty (needing refrigerating and skimming) and I wanted to serve the soup right away. Dark meat is good but it's supposedly more nutritious than white meat (plus it's what I had at the time).  I added water for moisture and seasoned the chicken with Mrs. Dash Onion & Herb seasoning.  I learned about Mrs. Dash seasonings when she was placed on a low-sodium diet three years ago.  I use it sometimes for quick flavor. Dried Italian seasoning or herbs de Provence would work well instead.

I cut the chicken into bite size pieces and shredded a little with a fork.

I added what I thought looked like a good amount of chicken to one quart of low-sodium chicken stock, with some frozen peas, frozen corn, and a can of drained no-salt cannellini beans, her favorite (things I usually keep for on hand).  Other vegetables would work, like: broccoli, cauliflower, chopped string beans or asparagus. I cooked the vegetables until just tender and while they still had their color.  I added about 1/4-1/2 teaspoon dried tarragon and, just before serving, some chopped fresh parsley.

I served the soup on a tray with fresh fruit and lots of love!

Here is a link I like to superfoods for healthy kidneys:  http://www.yourkidneys.com/kidney-education/Diet-and-nutrition/15-super-foods-for-kidney-health/2924

www.nephcure.org