NephCure Kidney International ®

Saving Kidneys, Saving Lives

Chef Sachet’s (Kidney-Friendly) Homemade Spaghetti and Meatballs

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Chef Sachet is not only navigating her career as a private chef during a global pandemic, but also caring for her young son diagnosed with FSGS. She sticks to a kidney-conscious diet when she cooks. While we recently shared Sachet’s ‘Seasonings Edition,’ she now presents a yummy homemade spaghetti and meatballs recipe (kidney-friendly, of course) that includes those seasoning blends. Enjoy!

Homemade Spaghetti and Meatballs

Meatballs    

1.5 lbs ground beef 
1 lb sweet italian sausage  
2 tbsp pepper    
1 egg       
1/2 cup breadcrumbs  

Spaghetti Sauce

4 whole large tomatoes, chopped fine
1 can of tomato paste
1 large can of tomato sauce
2 cups of water
1 whole onion, bell pepper, minced
4 whole garlic cloves, minced
2 tbsp olive oil
Instructions: 
  • Mix the ground beef and italian sausage by hand in a bowl.  Then add seasoning, breadcrumbs and egg.
  • Set aside.
  • Boil noodles, drain & cool. Then set aside.
  • Chop all the tomatoes, onion, bell pepper and garlic and saute in large pot on medium heat for 10 minutes until veggies are translucent.
  • Pre-heat oven to 375 degrees.
  • Roll meatballs using a ice cream scooper or large spoon onto a sheet tray. (TIP: Portion all the meatballs then oil your hands and roll each into perfect balls – this will help the meatballs from sticking to your hands).
  • Once veggies for sauce are broken down, add tomato products and water. Let simmer for 15 minutes. 
  • Bake meatballs on 375 for 15 minutes.
  • Once sauce is simmered, add garlic and herbs.
  • Remove meatballs from oven, drain grease and add to sauce, let simmer for 10 min.
  • Once sauce and meatballs are simmered and tasty add pasta and DEVOUR!!!!!!!!

Kidneys & COVID: Keyaira’s Battle Through 2020

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After being diagnosed with Nephrotic Syndrome at the age of 10, Keyaira Sanders has battled her fair share of health scares and struggles throughout high school. The now 22-year-old has reflected on these tough times with kidney disease and refuses to see anything but the beauty that this journey has given her. Like many this year, Keyaira found herself worried and confused about the COVID-19 virus. The pandemic has not been easy on her and her family, who all tested positive for COVID-19 this year. Learn more about Keyaira’s journey and how she’s managing through all the ups and downs.

What was it like during the initial shut down? What went through your head?

Living in the middle of a pandemic has been very tough mentally and physically for me. At first, I didn’t think that it would be this difficult to live through, but there are times where I have found myself battling with depression because I did not expect for things to still be the way in which they are today. At first, I was very confused about COVID-19 and the proper ways to keep myself, and those around me, safe.

What changes did you and your family make regarding COVID-19? 

Because I have Minimal Change Disease, there are a lot of changes that had to be made in my family. The main change, and the most difficult, is not being able to be around loved ones as usual. This has taken a toll on me emotionally because not being able to see your support system is a huge adjustment. 

How has the pandemic most impacted your life?

The pandemic has impacted my life in positive and negative ways. The negative, of course, is not having the ability to do things as normal. But on a positive note, it’s given me time to shift my focus on what really matters in my life. It’s helped me to reflect and appreciate life. I think it’s safe to say that we take a lot for granted and we really don’t realize it until it’s gone. 

You and your family unfortunately caught the virus. What was that like?

This was really hard because there was nothing that we could do to really help one another get better. I ended up being hospitalized because I have a pre-existing condition (MCD). It took a toll on me even more knowing that my family was battling it too. This was very difficult to get through and even after testing negative, it’s still a struggle mentally and physically. 

How has NephCure helped you through this time?

NephCure has helped me to stay strong in knowing that I have a community of loving support behind me. I am so grateful to have come across NephCure because without this community I’m not sure what I would do to keep going.

If you would like to support people like Keyaira and her family, please consider helping NephCure further its mission by donating here.

Four-Year-Old Kidney Patient’s Clash with COVID

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Within 14 months, 4-year-old Brooke Fritz was not only diagnosed with Nephrotic Syndrome, but also tested positive for COVID-19. The past year or so has proven to be a rollercoaster for the Fritz family, including a lot of change brought by the pandemic. While Brooke has fully recovered from the virus, it still takes a mental and emotional toll on her mother, Kristina. Learn more about Brooke’s battle with rare kidney disease and COVID-19, and how their family is staying strong through this difficult time. The questions below are answered by Kristina Fritz.

What was it like during the initial shut down? What went through your head?

In the very beginning of the shutdown, my husband and I were freaking out. Brooke had just got out of the hospital in January 2020 from a relapse triggered by an ear infection. After discharge, we were home roughly two weeks before she became ill with the flu. I remember thinking, ‘Boy, how can we escape COVID-19?’

We already had almost everything to monitor vitals for our family, except for a pulse oximeter. I ordered that and continued to stress about this unknown virus. It took a toll on all of us. I stressed about having to quit my job and stay home with the kids, which eventually I did have to do. I know it’s no one’s fault, but I’m left feeling angry about that.

What changes did you and your family make regarding the pandemic?

We live in a unique part of California that’s not densely populated. My husband had to continue to work, and at that time I was employed part-time. Brooke was still going to pre-school, but after my oldest daughter’s school closed, she was just hanging out at a friend’s house when I worked. We did limit our circle to just that. Pre-school seemed relatively safe, they limited the number of kids attending and they were all mostly outside. It felt very low risk and safe for her to attend. Also, the COVID-related cases were still very low in our county. 

Unfortunately, Brooke caught the COVID-19 virus. Can you tell us more about that and how it affected her? 

In the beginning of July, we were notified of a possible exposure to COVID-19 for Brooke. After a few days of talking back and forth with her nephrologist, we decided to go ahead and test both my kids for the virus. To our dismay, 48 hours later we got the call that both my children tested positive for COVID-19. My husband became very ill as well with COVID-19. Somehow, I managed to stay COVID-free. I cried and cried. 

The day before we were informed about Brooke’s exposure to the virus, her morning urine dip readings were showing plus 1. I thought, ‘Hmm, what is going on? Is she getting sick?’ Fast forward three days and she was off the charts with her urine dips and she was starting to swell. Luckily, her nephrologist had started her on steroids the day before (which was just two days into a relapse).

During these early days, Brooke only complained about a sore throat for one day. That was it. She had zero difficulty breathing. In fact, you would not know she had COVID other than her positive test and the fact she was relapsing. Her relapse lasted eight long days. On day eight she was swelling so badly I thought she was going to have to go in-patient for some albumen infusions to get her swelling down. We live almost four hours away from our nephrologist, so that night I tucked her into bed with the bags packed in the car ready to take her in first thing in the morning. Morning came, and, to my surprise, she was showing signs of heading towards remission. I was SO excited!

After she went into remission just a week and a half later, Brooke had some weird symptoms that our doctor thought was probably COVID-related. She would be up all hours of the night with diarrhea, she would complain that she couldn’t breathe, she did nothing but sleep or lay on a couch all day. This lasted a good two months. It really had me worried, but her vitals were good, so we stayed home and rested.

When Brooke tested positive for COVID, her nephrologist gave her go ahead to get Rituxamab infusions in the hopes to get longer remission days and cutdown the time on steroids. However, this took an additional 2 months to fully recover from. She had to test negative for COVID, which took over 21 days. And because of the pandemic, Brooke had to get caught up on some vaccines and also get the flu shot– this delayed her treatment another two weeks. I was so worried that Brooke would catch a cold and start to relapse and delay her treatment of Rituxamab (that she needed very badly) further.

How has NephCure helped you through this time?

NephCure has helped us, as a family, not feel alone in our journey. They have reached out to include our family in online resources that might interest us. And they invited us to attend a conference that I was looking forward to, but unfortunately was cancelled due to COVID-19. 

If you would like to support people like Brooke and her family, please consider helping NephCure further its mission by donating here.

Chef Sachet’s Kidney-Friendly Recipes: Seasonings Edition

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As a private chef and mother to a young boy battling FSGS, it’s important to Chef Sachet to keep kidney-conscious recipes in mind. In this ‘Seasonings Edition,’ Sachet shares helpful tips around making foods flavorful, without them being full of salt.

For a kidney-friendly diet, we constantly hear the words “low-sodium.” And while there are certain pre-made seasonings, rubs, and blends out there, I try to be mindful of what ‘salt-substitute’ seasoning I use. Often times, salt-substitutes have higher levels of potassium.  Your best bet is to invest in herb-based seasoning blends or make your own! Here’s some seasoning blends to make at home that are shelf stable and delicious!

    • All purpose poultry seasoning: equal parts onion powder, garlic powder, pepper, Italian seasoning (dried basil, thyme, rosemary).
    • Chili seasoning: equal parts: onion powder, garlic powder, pepper, cayenne, red chili powder, ground cumin, paprika, chili flakes.
    • Veggie blend seasoning: equal parts dried chives, dried onion, dried garlic, chili flakes, any dried herbs, dried citrus peel.

When looking to pack flavor into a dish try infused olive oils! They add great flavor and aromatic notes to anything you’re cooking. Start with the infused oil trifecta!

    • Garlic oil:
      1. 6 garlic cloves chopped to 1 cup of olive oil.
      2. In a small saucepan, bring the sliced garlic and oil to a boil, then turn the heat to low, and cook for 5 minutes, until the garlic is lightly browned. Turn off the heat and set aside. The garlic will continue to cook. Bottle once cooled. 30-day minimum shelf life.
    • Basil oil:
      1. 2 cups packed sweet basil to 1 cup olive oil.
      2. Bring a pot of water to a boil. Have a bowl of ice water ready. Blanch the basil leaves in the boiling water for about 10 seconds. Remove them quickly with a strainer and dunk in the ice water. Remove from the water and squeeze gently to remove the excess water.
      3. Roughly chop the basil and put it in a blender. Add the oil; blend until the basil is puréed. The mixture will be very frothy. Let the purée settle for about 30 min. Use immediately or refrigerate for up to a week. For the best flavor, let the oil come to room temperature before using.
    • Chili oil:
      1. ½ cup of chili flakes to 1 cup vegetable oil.
      2. Bring a pot of oil to a low simmer, add chili flakes, and let cook for 5 minutes while chilis sizzle. Turn off heat and let cook.
      3. Do not strain out chili flakes, bottle once cooled. 30 day minimum shelf life.

Holiday Gift Guide for the Kidney Warrior

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With the holidays fast approaching, the scramble is on to find the right gift for every person on your list. Look no further for the kidney warrior in your life! We’ve put together a helpful and thoughtful wish list for those battling chronic kidney diseases, like Nephrotic Syndrome, FSGS, and other protein-spilling kidney diseases. Happy Shopping!
Fuzzy Socks and Glomerulus Socks
    • These warm socks are especially helpful because many chronic kidney disease patients have anemia, which aside from making you feel tired, can also make you feel cold. Anemia is the result of kidney disease patients not producing as much heat in their bodies due to fewer red blood cells which carry oxygen through the body. For the science lover in your life, they may love to sport a pair with glomerulus (kidney cells) all over!
Travel Hot/Cold Therapy Body Wrap
    • Along the same lines as the fuzzy socks, this body wrap can be a great way for those with chronic kidney disease to warm up, especially during the colder months ahead of us.

Kidney Plush Toy
    • This adorable little kidney is cuddly, soft, and perfect for little ones!

Captain Kidneys T-Shirt
    • A spin off the Captain America logo, any Marvel buff will love the whimsical “kidney” take on this design.

Albustix for Urianlysis
    • It might not be the most glamourous gift, but a useful one indeed! Testing protein levels in your urine is part of chronic kidney patients’ daily routine. These disposable strips are reliable and easy to use.

Pulse Oximeter
    • This tool can be especially helpful for those on hemodialysis. Oxygen levels in the blood can drop during dialysis, so it is important to keep an eye on everything.

Aromatherapy Shower Steamers
    • The equivalent of a “bath bomb,” these shower steamers infused with essential oils are perfect for relaxation. Many side effects come with chronic kidney disease, both mental and physical ones. These steamers can help patients and caregivers alike!

Back and Neck Massager
    • And while we’re on the subject of relaxation, this back and neck massager might help do the trick too! Small and portable enough for kidney patients to take with them to the hospital, on long car rides, during treatments, etc.

Positivity Journal
    • Battling a chronic and ‘invisible’ disease can take a toll on you mentally, whether you’re the one diagnosed with the disease or a caretaker. Reinforce a positive mindset and take time for a little self-care with this daily journal.
 Books

  • Stopping Kidney Disease
    • ‘Stopping Kidney Disease: A science based treatment plan to use your doctor, drugs, diet and exercise to slow or stop the progression of incurable kidney disease’ contains research on all stages of kidney disease newly diagnosed, stage three, four, five, dialysis and transplant.

  • Nephrotic Warriors: The True Super Heroes
    • This book shows the world who the ‘Nephrotic Syndrome Warriors’ are. It brings a load of positivity and strength to all suffering from Nephrotic Syndrome and lets them know they are not alone in this fight.

  • The Cooking Doc’s Kidney-Healthy Cooking
    • A combination of concrete health tips, scientific knowledge, inspirational stories, charts, and beautiful recipes and pictures, this book written by Dr. Blake Shusterman (who is an adult nephrologist) can help you understand the dietary needs for each stage of kidney disease and make you a better cook.

  • Coping with Prednisone (*and other cortisone-related medicines)
    • This books covers the latest knowledge about bone health, the use of steroids for children, and new steroid compounds, along with additional strategies and exercises based on their own experiences and responses from other patients and physicians. It was also our book of the month. We sat down with one of the authors, Dr. Julie Ingelfinger, for a Q&A session. You can watch here.

Water bottle that tracks water intake
    • This high-tech water bottle is great for patients who need to keep track of their water intake. The water bottle also glows to remind you to stay hydrated!

Roll-up Guest Bed/Floor Mat
    • Another great option for caregivers who may find themselves unexpectedly staying in the hospital with their ill loved one. Small enough to travel with or to keep in your car.

Blood Pressure Monitor
    • Another useful gift for those with kidney disease. This will help them monitor vitals on the daily!

Illinois Walk Team Chair Helps Build Community for Rare Kidney Diseases

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As a patient parent in Illinois, Cheryl LaBanco, is constantly raising awareness for Nephrotic Syndrome and FSGS. She is passionate about connecting with other local families and being a support system for those battling the same disease as her daughter. Cheryl is the Advocacy Lead and Local Walk Team Chair in her region. Learn more about her family’s story and her efforts to build a sense of community around this rare disease.

Tell us about your family’s connection to Nephrotic Syndrome and FSGS.

My daughter, Nora, was diagnosed with Nephrotic Syndrome on January 31, 2017 at the age of three. We were hopeful she would respond to the medications and eventually outgrow this condition. After several weeks, she still was not responding to the first line treatment so a biopsy was performed to see if she had a more serious form, called FSGS (focal segmental glomerulosclerosis). FSGS scars the kidneys and may lead to kidney failure. Unfortunately the biopsy results confirmed the FSGS diagnosis. She will not outgrow this disease and will have to live with it the rest of her life. There is currently no cure and treating the disease can be difficult and harsh. The high dose steroids left Nora with cataracts, but fortunately, Nora has been lucky overall. She was able to reach a remission by combining an immunosuppressant and blood pressure medication. She is thriving and enjoys playing piano, softball and soccer.

How did you first get involved with NephCure?

We found NephCure through research after Nora’s initial diagnosis. NephCure’s Kelly Helm has been such a great resource for information and support. We are so thankful for the NephCure community.

What are the goals you are setting for yourself/your region?

Our goals are to get more people involved and raise awareness. We want our daughter to know that she is never fighting alone and always has a team supporting her. We hope to continue to support new families and provide resources.

How will these goals make an impact on disease awareness?

We’ve had many people reach out to us simply by searching Nephrotic Syndrome or FSGS. The more we get our story out there, the more people know about the disease along with what resources are available.

What is the favorite part of your walk that you missed being virtual this year?

Our family’s favorite part of the walk is when the other local families share their stories. Some are happy, some are not so happy, but all help build a sense of community and purpose and helps us focus on raising funds to hopefully one day cure Nephrotic Syndrome and FSGS. After Nora’s diagnosis we felt very alone, so it is nice to have other families to connect with.

What surprised you about participating in NephCure’s On the Move virtual challenge?

Cheryl’s daughter, Nora, who suffers from FSGS.

The ability to still have a team behind us supporting us was amazing. Normally we have a good turnout for the walk so we weren’t sure what to expect moving to virtual. We are still trying to find ways to raise funds for NephCure, even without our in-person event.

Why is it so important for you to get involved with NephCure and our mission?

It is important to us to be involved with NephCure because it is one of the only organizations working to find treatments and a cure for Nephrotic Syndrome and FSGS. We want our daughter to have safe and effective treatment until there one day is a cure. We also find it important to be involved with NephCure because it has allowed us to show our daughters that in the face of adversity you can chose to sit on the sidelines and hope or work together with others that have to the same goal to make the world a better place.

To find your local NephCure Community and to learn more about volunteer opportunities, click here. 

Meet Northern California Regional Leader: Kara Jones

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Kara and her son, Christian.

Kara Jones is a patient parent in the Bay Area, her son suffers from Nephrotic Syndrome. She has been a dedicated NephCure volunteer for over 10 years, doing everything from supporting newly diagnosed families to creating the Silicon Valley Pig Jig event! You can connect with Kara directly at siliconvalleypigjig@gmail.com.

What’s your personal connection to NephCure?

I am connected to NephCure as a volunteer — I’m the Northern California Regional Leader and the Co-Chair of the Silicon Valley Pig Jig. I first became involved with NephCure because my son, Christian, was diagnosed with Nephrotic Syndrome in 2002. I started volunteering with the organization in 2009.

Why do you volunteer with NephCure?

I continue to volunteer with NephCure to bring hope to my son and to all those that suffer from protein-spilling kidney diseases. Volunteering has become a great job for me because I feel like I am making a difference. I hope that through my work with NephCure, I will inspire my kids to get involved and work to help others through volunteering.

What projects are you working on right now? How do they make you feel?

Both of my roles (Co-Chair of the Silicon Valley Pig Jig and the Northern California Regional Leader) keep me involved in the community. Volunteering makes me feel engaged, proud, and, at times, stressed… but in a good way!

NephCure is local to you. To learn more and get involved within your regional volunteer community, please click here. 

Meet Southern California Regional Leader: Christopher Windisch

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Christopher Windisch is an FSGS patient living in the Southern California area. His leadership has helped secure not only a great sense of support and friendship within the local kidney community, but his ingenuity and creativity constantly pushes him to think about what’s next. Christopher sits on NephCure’s Board of Directors. You can contact him directly at socal@nephcurevolunteer.org.

What’s your personal connection to NephCure?

I was diagnosed with FSGS myself, and I first became involved with the organization in 2010. I  sponsored walks in my area at first.

What makes you committed to volunteering with NephCure?

I have a constant hope that we will one day find new therapies. I also hope to leverage my leadership to build a sustainable NephCure community in the Southern California area.

Chris, his wife, and their two boys.

What projects are you working on right now?

I’m mainly focusing on fundraising at the moment. I sit on NephCure’s Board of Directors so I am also involved with things there as well. I always feel like I should be doing more!


NephCure is local to you. To learn more and get involved with your regional volunteer community, please click here.

Meet Dallas Regional Leader: Tiffany Lievanos

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Meet Dallas Regional Leader, Tiffany Lievanos whose son suffers from Minimal Change Disease. Learn how she is working to help kidney kids understand the importance of their diet and how she is empowering other volunteers through the local events in her community. You can connect directly with Tiffany at nephcuredallas@nephcurevolunteer.org.

What’s your personal connection to NephCure?

My now 3 year old son, Owen, was diagnosed with Nephrotic Syndrome/MCD two years ago. I was searching for answers and more information about the rare disease that shook my world. I came across a Facebook group for parents of kids with Nephrotic Syndrome and several families pointed me to NephCure. I reached out and quickly became a part of the NephCure family. I started listening in on calls and once I felt comfortable, I started getting more involved. Before I knew it I was leading the NephCure community here in Dallas. It has been such a joy to lead, follow, and connect with other families through NephCure.

Why do you volunteer with NephCure?

I volunteer with NephCure because it makes me feel like I am being proactive in my son’s fight against kidney disease. When it comes to living with a rare disease, there are so many unknowns and that constant feeling of “I have to do something” from a parent’s point of view. We channel a sense of a protective nature in order to protect our child from this disease and the course of treatments that comes with it. I suppose it’s the mama bear in me that wants a little control—a little control that can certainly go along way as we make strides in awareness and better treatments.

When I started volunteering it pulled me out of a dark place of feeling alone and unheard. Volunteering was my outlet, a chance to be a voice, to create a hope for other patient families, and to be the support that I once needed and still need to this day. What keeps me committed, other than the fact that I won’t stop until there is a cure for my son, is the empowerment and love that comes with it and shines through it!

Volunteering was a big part of my upbringing and the impact that it had on me as a child which was making a difference in other people’s lives has never left me. I love to help others! Being a part of the NephCure family is such a gift to me and my own family. Being a NephCure leader is a superpower that I know I can utilize and make a difference!

Tiffany and her son, Owen.

What projects are you working on right now? How do they make you feel?

I am currently working on a couple projects at the moment. While community development is my main focus, I have started working on sub-projects to capture my patient families engagement and hope to provide the families and kidney kids with supportive tools that bring us all together as a community.

We recently launched Kooking Kidney Friendly with Keyaira and Sous Chefs a kids virtual cooking class. I hope this becomes a new way for patient families to share low sodium recipes with each other and a fun way to get our kidney kids included in our community. I feel like its important for our kids to grow up knowing and truly understanding their dietary needs, so that they can make conscious meal choices themselves and feel good about it!

Looking ahead, I have a Dallas Pig Jig scheduled for October 2021, and currently brainstorming a formal dinner party for early 2021 should Covid allow. Planning these events makes me feel productive. Event planning has always been something I have enjoyed and knowing its to make a difference in my child’s future makes it all the more empowering.

NephCure is local to you. To learn more and get involved with your regional volunteer community, please click here. 

Meet Illinois Regional Leader: Kevin Mott

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Kevin Mott is an FSGS patient living in the Chicago area. Early on, he had a tough time finding doctors who would take his symptoms seriously. He saw four medical professionals before finding his nephrologist who diagnosed him properly. Kevin has also received a kidney transplant in 2017. He is a member of NephCure’s Board of Directors. You can connect directly with Kevin at illinois@nephcurevolunteer.org.

What’s your personal connection to NephCure?

I discovered the NephCure message board after my FSGS diagnosis years ago. I found it to be a helpful source of information. After some time volunteering with the organization, I was invited to sit on the Board of Directors.

Why do you volunteer with NephCure?

I volunteer with NephCure because I want to be supportive of the entire community dealing with rare kidney diseases—patients, parents, family, loved ones, doctors, caregivers, researchers, etc. I want to do what I can to help others on this journey have positive outcomes.

Kevin and his kidney donor.

What projects are you working on right now?

Currently, I am scheduled to speak to two groups whom I would not have met without being involved with NephCure. In particular, we are discussing issues of diversity and inclusion as it relates to the experience of dealing with rare kidney disease. It makes me very proud to advocate for all patients, but especially African American men who are disproportionately affected.

 

NephCure is local to you. To learn more and get involved with your regional volunteer community, please click here. 

Our Mission

NephCure Kidney International’s ® mission is to accelerate research for effective treatments for rare forms of Nephrotic Syndrome, and to provide education and support that will improve the lives of those affected by these protein-spilling kidney diseases.

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