“What Can I Do to Prolong the Life of My Kidneys?” June 1, 2018 by Lauren Eva Read our expert panel’s answers to this community-generated question. Mindy Banks, MD Rocky Mountain Pediatric Kidney Center Denver, CO FSGS, or focal segmental glomerulosclerosis, is a diagnosis that is made based on kidney biopsy often after it is noted that a person has high amounts of protein in the urine, high cholesterol, and/or swelling. Hypertension and progressive kidney dysfunction can also be a part of the disease. FSGS is really a descriptive term where scarring is found in segmental portions of the some of the filtering units of the kidney, also known as “glomeruli”. Because it is a descriptive term, there are actually many different underlying causes, including immunologic (essentially “autoimmune” in nature, often responsive to medications that suppress the immune system), genetic, viral (such as HIV), obesity, severe prematurity with intrauterine growth restriction, and even related to scarring from other primary disorders, such as lupus. Because there is such a wide range of causes of FSGS, there are also varying approaches to treatment. Often, medications such as prednisone or other steroids are first-line therapies. It is important to take these medications as prescribed and not miss doses because these medications can affect the normal functioning of the adrenal glands. Therefore, a person can become quite sick if doses are missed without their doctor knowing. Not taking medications as prescribed may also decrease their efficacy. Calcineurin inhibitors (tacrolimus and cyclosporine), are also commonly prescribed. These medications are time-sensitive and must be taken every 12 hours apart to achieve appropriate levels and not risk toxicity. These medications also have many significant interactions with food you may eat or other medications you may take. Other immunosuppressive therapies have been tried, including mycophenolate (CellCept), rituximab, plasmapheresis, LDL pheresis, and abatacept, each with its own side-effect profile. Being your own advocate and discussing options in detail with your provider is important to make sure you understand the medications you are taking, how to take them, and what the risks are. Without this knowledge, you may not be getting the medications’ full benefit and be putting yourself at unnecessary risk. Non-immunosuppressive interventions are also important. ACE inhibitors (such as lisinopril or enalapril) or ARBs (such as losartan) are blood pressure medications that are also useful to help reduce the protein in the urine by preferentially decreasing pressure inside the filtering units of the kidneys. Statins, which are high cholesterol medications, can also be very helpful. Water pills such as Lasix/furosemide may also be necessary to control swelling. Good diet and exercise are also important parts of the equation. Restricting sodium in the diet helps reduce the amount of diuretic that may be needed and thus, limit side effects. A low-sodium diet can also help with hypertension. Protein is not usually restricted if someone is spilling significant amounts of protein in the urine. Controlling obesity also limits the stress on the kidneys and can slow progression of the FSGS. Certainly, avoiding smoking is critical to the lifespan of any kidney. Having an FSGS diagnosis can profoundly impact a person’s life. However, it is important to know that you have the power to make a difference in your health. It is important to work with your providers to come up with a healthcare plan that works individually for you. Find a team that you trust and communicate well with. Be involved and be your own advocate. Lastly, find a support group to help you through this. Treating your mental health is just as important as treating your physical health. You are not alone and you can do this! Dr. Mindy Banks is board-certified in pediatrics, internal medicine, adult nephrology and pediatric nephrology. Her combined internal medicine/pediatrics training was at Nationwide Children’s Hospital in Columbus, Ohio. She continued her medical training in the Midwest with fellowship at Northwestern University Hospital and Lurie Children’s Hospital in Chicago. Her medical practice focuses on children and young adults with the whole spectrum of kidney diseases ranging from frequent urinary tract infections to hypertension, nephrotic syndrome, dialysis and post kidney transplant care. She lives in Denver, Colorado with her husband and 3 boys. Besides nephrology, her life is spent either with sticky fingers from crafting or baking or sitting sidelines at a soccer game. Diane K. Jorkasky, MD, FACP Complexa, Inc. Berwyn, PA Having been in clinical research for 30 years as well as having been in practice in nephrology, I have seen as new medicines have come to make a huge difference in patients’ lives. Unfortunately, few of those medicines have benefited kidney disease. When I advise a patient on how best to manage their disease, I think about how I advise my own parents. The first is to make sure you read and know as much about the disease as you can. You have to do your homework. But you have to be careful as there is a lot of misinformation out there, especially on the internet. I would turn to sources such as NephCure Kidney International or other patient advocacy organizations as they provide extremely important and correct information to patients. The patient with the disease is always first in their minds. Do not be afraid to ask your doctor questions! A good doctor always takes the time to speak to their patients, no matter how busy they are. Write down your questions and take the list with you when you see your doctor. If the doctor ignores your questions or dismisses them, I would look for another doctor. The second thing is to ensure that you follow the instructions that your doctor recommends. All kidney diseases, regardless of cause, will get worse if your blood pressure is abnormally high, for example. Taking your blood pressure as prescribed and watching your diet is extremely important for patients with kidney disease and Nephrotic Syndrome. Finally, it is important to ask your doctor about clinical trials that may be ongoing or are about to start for new medicines that could benefit your kidney disease. Many of the current medicines used in kidney disease have severe side effects, like prednisone. Do not assume that your doctor knows what new medicines may be available for use in a clinical trial. NephCure and some, but not all, disease advocacy websites may list the drugs, the studies and the nephrology practices in the country where trials are being conducted. The only way that old, poorly effective and very risky drugs can be replaced with good ones that truly make a difference in the disease is by studying them in clinical trials. There are now more drugs than ever being considered for the treatment of FSGS and other kidney diseases. I would encourage patients to think about exploring these opportunities. Your physician can guide you on this journey as well. Be inquisitive, as it can make a difference in your life. Diane Jorkasky, MD, is Executive Vice President, Chief Medical Officer, and Head of Development at Complexa Inc. (Berwyn, PA), a patient-focused, science-driven, clinical stage biopharmaceutical company developing a novel class of compounds, Nitrated Fatty-Acids, for the safe and effective treatment of debilitating fibrotic and inflammatory diseases. She has over 30 years of experience in the pharmaceutical industry across all phases of clinical research and development for a broad range of drugs in multiple therapeutic areas. Diane currently serves on the Board of Directors for OSE Immunotherapeutics (Paris, France), the Scientific Advisory Boards of Sigilon (Cambridge, MA) and Alzheon (Framingham, MA) and the Strategic Advisory Board of BioMotiv. She is also a member of the faculty at the University of California at San Francisco and Uniformed Service of Health Sciences Medical Schools. She serves on the executive committee of the American Course on Drug Development and Regulatory Science. Diane has published over 100 peer-reviewed articles and teaches internationally on drug development. She received her MD from the University of Pennsylvania, where she also completed her nephrology fellowship. In 2016, she was awarded the Elizabeth Kirk Rose Woman in Medicine Award by the University of Pennsylvania. She holds board certifications in clinical pharmacology, nephrology and internal medicine. Diane obtained her BA in Chemistry from the College of Wooster, where she was honored with the Distinguished Graduate award in 2013. Jenna Henderson, ND Holistic Kidney New Paltz, NY FSGS and Minimal Change patients from all over the world consult with our naturopathic clinic, Holistic Kidney. Many of them are looking for alternatives to medications or as adjunct therapy for when medications help somewhat but they are still not able to reach full remission. Naturopathic doctors are the only healthcare professionals with broad training in both botanical medicine and pharmacology. I can tell if a particular herb would work well with a patient’s current prescription medications. I don’t encourage patients to abruptly stop any medication, but over time, we may be able to reduce the need for some medications. We recommend plant-based supplements and dietary changes to reduce kidney inflammation and proteinuria. We also address long term cardiovascular health and bone density issues for patients. The connection between Nephrotic Syndrome and low-thyroid hormones is often not talked about, even though many kidney patients report feeling chronically cold. This is something we address. We also consider chronic insomnia, which is very common with Nephrotic Syndrome. By looking at Nephrotic Syndrome from different perspectives, we are able to use natural medicine to reduce kidney stress and improve kidney function. Dr. Jenna Henderson’s practice, Holistic Kidney, is dedicated to the unique needs of renal patients with an international clientele and patients on 6 continents. A kidney patient herself for over 25 years, she has experienced all stages of kidney disease firsthand. She is a graduate of the University of Bridgeport. Dr. Henderson has had several articles on kidney health published in Townsend Letter, Natural Medicine Journal, and NDNR. She has lectured extensively across the U.S. to naturopathic doctors, kidney patients and kidney professionals, and co-hosted the radio show Improve Your Kidney Health. Dr. Henderson seeks to bridge the gap between mainstream nephrology and natural medicine. In her practice, she helps patients sort through often conflicting information to understand what is appropriate for their individual needs and stage of kidney function. She is often able to help patients delay the need for dialysis. For those already in kidney failure, she helps patients find optimal wellness with dialysis or a transplant. She holds a naturopathic license in the state of CT and has recently relocated to New Paltz, NY. For more information, visit www.holistic-kidney.com.
Your Advocacy Creates Change – Living Donor Protection Act February 26, 2016 by Chelsey Fix 2/26/16 – Because of your efforts on Capitol Hill, the Living Donor Protection Act of 2016 was introduced yesterday by Rep. Jerrold Nadler (D-NY) and Rep. Michael Burgess, MD (R-TX) in the House, and Sen. Mark Kirk (R-IL) and Sen. Kirsten Gillibrand (D-NY) in the Senate. This legislation promotes organ donation and protects the rights of living organ donors. It is made possible in part by YOUR action on Kidney Community Advocacy Day, a joint advocacy event with the support of 16 separate kidney organizations and led by the American Society of Nephrology (ASN).For many patients with kidney failure, a transplant can be the best form of kidney replacement therapy. But today, more people than ever are waiting for this life-saving measure: a patient is added to the kidney transplant wait list every 14 minutes. In 2014, there were 101,168 people on the kidney transplant wait list, but only 5,536 living donor transplants performed that year. The Living Donor Protection Act would increase the number of kidney transplants by eliminating pointless barriers to donation. This bill prohibits insurance companies from denying or limiting coverage and from charging higher premiums for living organ donors. It also clarifies that living organ donors can use Family Medical Leave Act time to recover from donation surgery and maintain job security. This important legislation will allow more Americans to consider living organ donation and help countless people receive the gift of life. NephCure Kidney International strongly supports this bill and joins ASN and the National Kidney Foundation in urging members of Congress to support this bi-partisan legislation. Want to make sure this bill becomes law? Tell your Senators and Representatives why it’s important to you, and urge them to cosponsor it. You can find supplemental documents to send to your congresspeople here.
Watch the Demystifying Research Webinar! July 21, 2015 by Chelsey Fix Watch NKI and special guest speaker Dr. Jonathan Hogan from The University of Pennsylvania, as we demystify Nephrotic Syndrome research! Research is important to all members of the NS community- so why not learn about it! We talk about how research works, what is happening in the NS research world, and what patients and their families can do to help. Come with your research questions, and prepare to have them answered! CLICK HERE TO WATCH THE WEBINAR
A Call for More Specific Standards of Care July 6, 2015 by Chelsey Fix From a new article, published by Nephrology News and Issues, comes a provocative call for more specific standards of care in nephrology. As of now, the standard of care for the majority of kidney-failure patients is to follow a similar treatment plan, regardless of the cause for their kidney failure. Yet, according to research conducted at Stanford University School of Medicine, this approach is not enough. In fact—it could even be dangerous. Researchers used data from over 84,000 patients, who between 1996 and 2011, suffered end-stage kidney disease due to one of six major glomerular disease types. The results were shocking. Mortality ranged all the way from 4% per year for patients with subtype, IgA nephropathy, to 16% per year for patients with subtype, vasculitis. Furthermore, patients with lupus nephritis were almost 2x as likely to die as those with IgA nephropathy. In other words, the specific type of glomerular disease determined how long a patient lived after developing kidney failure. As one researcher put it, “when you divide patients according to their glomerular disease subtype, you actually see a whole spectrum of outcomes (O’Shaughnessy).” And yet, the current standard of care is to follow a similar treatment plan for most kidney-failure patients, regardless of cause. “We showed that a patient’s cause of kidney failure is strongly associated with their risk of dying after starting dialysis or receiving a kidney transplant.” Thus, treatment can no longer be generalized and non-specific. Medical professionals cannot ignore the cause of kidney failure and proceed with treatment as though all kidney failures are one and the same. The cause of kidney failure cannot be forgotten. Rather, it should be the stepping point from which treatments are determined, and tailored toward disease-specific risks. More so, further research is necessary to determine why these survival disparities exit from one patient to the next. If medical professionals begin to take into consideration what caused the kidneys to fail in the first place, it could possibly improve the patient’s quality of life and even increase their life span following kidney-failure. To read more, visit: http://www.nephrologynews.com/study-shows-importance-of-cause-of-kidney-failure-when-planning-future-treatment/