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.

~ ~ ~

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

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

~ ~ ~

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.

Versatile Fresh Mild Salsa: Snack, Endive Finger Salad, Pasta Salad

What a surprise! I had no idea when I made this mild salsa that it would be so versatile during our vacation in New Hampshire. 

Salsa With Blue Corn Chips

The salsa was made from some of my garden vegetables before we left. We ate it as a snack the first night on vacation. I love using organic blue corn chips because, not only do they taste good, they are a nice contrast to salsa. Unfortunately, I don't have a picture because we were on vacation and didn't want to seem obsessive, at least not at the beginning of vacation anyway!

~ Picture the

Salsa

with Blue Corn Chips

Here! ~

Method: I diced a few cucumbers, a few tomatoes, and a red onion, added organic canned corn (drained), chopped fresh parsley to taste (I didn't have cilantro), fresh juice from one lime, and pepper to taste. It was a pretty big batch, but I was trying to use up vegetables that I had just picked. Reduce the portions for your needs.

Being leery about the existence of GMOs and chemicals in conventional canned or fresh corn, I used organic canned corn hoping to avoid them. (Frozen bagged corn would be best to avoid possible BPA from cans.) Still, I can't be sure. This is one of the reasons I support GMO labeling - it should be my choice.

Endive Finger Salad
Then I used the salsa in this endive salad to which my son said, "Oh, no, I feel like I'm in Paris again!" You would understand why he said that if you saw this post.

Method: I cut the ends off the endive, carefully pulled off a few leaves, added a slender slice of block feta that was left over from our watermelon salad, topped with a spoonful of salsa and a sprinkle of extra virgin olive oil.

Pasta Salad
The rest of the salsa was added to farfalle pasta one night and served as a side pasta salad to our hamburgers.

Method: To cooked and cooled pasta, I added salsa, some extra virgin olive oil, and rice vinegar to taste.

For the bread and pasta, I couldn't find organic rolls nearby at Price Chopper and didn't have time to drive to Littleton Food Co-op, so I picked up organic bread which I was happy to see was from the nearby state of Vermont. I also found local cheese from Vermont, organic wine, and partially organic pasta. Whole wheat pasta was not an option and we're really not a fan of it anyway. Why the fuss to find organic? Ever since my daughter was diagnosed with her kidney disease, when shopping, I look for organic and if I can't find it, I look for local; if I can't find local, I try to make the best conventional choices (but more about that in another post).

Roasted Peppers

The peppers were previously roasted at home a few days before vacation and came along with us.

Method:  trim peppers, coat with olive oil, broil on low until skins are charred. Place in a bag until cool enough to touch. Peel skins.

~ ~ ~

Meats

This summer, I've had the convenience of purchasing most of our meat at farmers markets. The meats are frozen in durable vacuum-sealed packages so it's easy to stock up. Here are the names of the farms: Aquidneck Farms, Pat's Pastured, J. Beaulieu Farm, Roy Carpenter's Farm, Meadowstone Farm

~ ~ ~

The historic Littleton Grist Mill where fine grains can be purchased

Crunchy Couscous Salad, NE NephCure Meeting

Here is a light summer salad I made for the kidney-friendly pot luck buffet we had during a recent NephCure New England Chapter support meeting.  Several parents and families came together for conversation, support, and to hear valuable information from an experienced renal dietitian from Children's Hospital. While my daughter is still in remission* and isn't on a special diet anymore (she was on a reduced sodium diet for two years, although we still watch her sodium intake), there's always something helpful to learn and I like to stay connected with NephCure and the families I have met over the past few years.

When we have these pot luck dinners I love to make a recipe from the DaVita website, a great resource for kidney patients and their families with kidney-friendly recipes and nutritional information.

Crunchy Couscous Salad
Recipe by Carol, a DaVita dietitian. Click here for their printable version.

1/2 cup dry couscous
3/4 cup water

Mixture
1 cup cucumbers, thinly sliced and quartered (I used the English variety)
1/2 cup red bell pepper, chopped
1/4 cup sweet onion, chopped
2 tablespoon black olives, chopped (I used pitted Kalamata olives)
1/4 cup flat-leaf parsley, chopped

Dressing
2 tablespoons olive oil
2 tablespoons white wine or unseasoned rice vinegar (I used unseasoned rice vinegar)
2 tablespoons feta cheese crumbles (I looked for the lowest-sodium)
1-1/2 teaspoon dried basil
1/4 teaspoon salt (I omitted due to the sodium in the feta cheese and olives)
1/4 teaspoon pepper (I used a few turns of the pepper mill)
Juice of half a lemon (my addition to the recipe)

I started with the couscous because it needs time to cool before adding the other ingredients.  In a medium sauce pan, bring water up to a boil. Remove from heat and add couscous. After about 5 minutes and all the water is absorbed, turn couscous into a large bowl and fluff with a fork. Let cool.

Next, I made the dressing so flavors would start building while I made the mixture. Simply combine all ingredients in a small bowl.

Prepare ingredients for mixture and to the cooled couscous (fluff up some more and if not cool wait a few more minutes). Mix in dressing. Refrigerate at least one hour before serving. I thought it needed a little lemon so I squeezed juice of half a lemon over the salad.

* * *

Nutrients per serving (my version might be a little different since I used Kalamata olives and lemon and omitted salt): Calories 121, protein, 3 g, carbohydrate 14 g, fat 6 g, cholesterol 4 mg, sodium 167 mg, potassium 105 mg, phosphorus 51 mg, calcium 47 mg, fiber 1.4 g

Renal and renal diabetic food choices: 1 vegetable, low potassium, 1/2 starch, 1 fat

Diet Types: CKD non-dialysis, dialysis, diabetes

Patients: Always check with your dietitian or nephrologist.

For more nutritional and helpful links for renal patients and families that the dietitian provided at our meeting click here.

* * *

* * *

*Yes! My daughter is still in remission (she was diagnosed with FSGS Syndrome in February 2008 and has been in remission since February 2010). We received the good news yesterday from her nephrologist. Given her continued remarkable lab results, we are again reducing her Prograf, an immunosuppressant, by another 1 milligram. It's great news but any changes in her medication, even this tiny amount, could cause relapse so we'll be closely monitoring her protein level.

Renal-friendly Stuffed Green and Red Peppers

Last night I went to a NephCure Team New England meeting to talk with other parents of children with FSGS Syndrome and Nephrotic Syndrome and to listen to a terrific guest speaker.  We were asked to bring a renal-friendly dish for the "Love Your Kidneys" potluck dinner.

The recipe is from the Davita website, an online source for kidney disease and dialysis treatment, which they adapted from the cookbook, Cooking for David.  

It's not suprising that peppers are a healthy food for kidney disease.  A half cup serving has only 1 mg of sodium, 88 mgs of potassium and 10 mgs of phosphorus, which is important for those approaching end-stage renal failure or on dialysis.  Peppers are also an excellent source of vitamins C, A, B6, folic acid and fiber.  And red peppers contain lycopene which is an excellent antioxidant.

Here is a link to a great article about the connection between superfoods and chronic diseases and inflammation and lists 15 top healthy foods for people with kidney disease, http://www.davita.com/diet-and-nutrition/lifestyle/top-15-healthy-foods-for-people-with-kidney-disease/a/2113.

Onions have terrific health benefits too.  I like to cook with red onions if I don't want too much onion flavor, which weakens when cooked. Freshly grated cheese of your choice is always nice.

Stuffed Green Peppers

• 3 green bell peppers
• 1 lb ground beef
• 2 tsp unsalted margarine/butter or olive oil (use will be divided)
• 1/4 cup onion, chopped
• 3 tbsp thick and chunky mild salsa
• 1 tsp Mrs. Dash® onion herb seasoning
• 2 cups cooked rice
• 1/2 cup water
• 1/2 cup soft white bread crumbs
• 1 tsp poultry seasoning
• 1 tsp paprika

1. Cut peppers in half, remove seeds and parboil for 4 minutes. Cook rice according to instructions.
2. Meanwhile, in a large frying pan start cooking ground beef. When done, remove from pan, drain in strainer to remove drippings and set aside. 
3. Sauté onion in 1 teaspoon margarine, butter, or olive oil until translucent and soft. Add salsa, Mrs. Dash® herb seasoning, cooked rice and meat, combine by stirring.
4. Stuff green pepper halves with meat and rice mixture, and place on a baking pan or shallow baking dish. 
5. Combine bread crumbs, poultry seasoning and remaining margarine/butter, melted. Sprinkle over the tops of the stuffed peppers. Add 1/2 cup water to pan or dish to keep peppers moist.
6. Cover and bake at 350 degrees for 30 minutes, then uncover and bake 5 minutes more until browned.
   
   
   A few changes I made:  after tasting, I thought it needed a little more salsa, so I adjusted to my taste. I used organic long grain brown rice and organic whole wheat bread crumbs, which I made, I added an egg to help hold it all together and sprinkled on a little grated cheese at the end.  Since I doubled the recipe, I used 1 lb ground beef and 1 lb ground dark ground turkey meat because it has more nutrients. I was a little surprised that salsa was an ingredient but it did add good flavor and made it easy. I used a low-sodium organic brand.
   
   
   Recipe is from www.davita.com.  Please go to http://www.davita.com/recipes/meats-and-seafood/stuffed-green-peppers/a/166 for a printable version of this recipe and for kidney related nutritional facts. And, of course, consult your renal dietitian or physician.