The Trauma of Transplant: Jeremy’s Path to Wellness May 26, 2020 by Kylie Karley “At 14, I had just finished my first year of high school. I played varsity soccer as a freshman, and I was getting ready for one of the most important summers of my young soccer career. But my life took a different course, and from ages 14-24, I had to completely focus on my health. After my first blood draw–I received my diagnosis of FSGS. During those initial years with FSGS, I did multiple different treatments, including high-dose IV steroids and chemotherapy. I’ve had two kidney transplants and had both my native kidneys removed. I had a staph infection that caused my first kidney to fail, and I have done a total of 4 years of different kinds of dialysis, as well as at least 20 other procedures. Through that time, managing my chronic kidney illness as part of everyday life, my family wondered, “How are you handling this so well?” I would unknowingly shrug and give a cliché line about needing to move on to the next thing. Two years later, after numerous treatments and six months of dialysis, I received my first transplant. By 21, my body had rejected the kidney, and after three and half years on dialysis, I received my second kidney at 24 from a family member. I was a rock–in survival mode–for those ten years. Nothing fazed me. In times of pain or frustration, I would be upset but subdued. Once those moments would pass, so would the thoughts about them. It always looked and felt like I was doing great, and I was so strong that not even this illness was going to weigh on me. Everyone’s perception of me was that I was handling this difficult part of my life well. I didn’t realize until about a year ago that the pain, although I wasn’t thinking about it, was still affecting me. Jeremy and his kidney donor. Three and a half months after my second transplant, I traveled for the first time in four years without a dialysis machine. I was ecstatic! My brother was playing in his first away college soccer game for Sacramento State, and I was going to get to see him play. For my brain, it was the first quiet moment it had in my adult life. I was sitting in my friend’s bedroom in LA the day before the game, and nobody was home. I couldn’t stop thinking about the pain of my second transplant. I felt trapped. Then, as I sat on the bed with my legs stretched out and a blanket over them, TV in front of me, the way I had in the hospital, the bedroom seemingly turned into a hospital room; the house became the 8th floor transplant ward at UC Davis. I stayed in this state for almost eight hours until my friend walked in the door. I was numb. I had relived the entire day in a hospital room. I now realize that this was my first time experiencing severe Post-Traumatic Stress Disorder symptoms. This incident confused me, and when I got back home, I started to do some research. It didn’t take long to find out that post-transplant patients, while having lower rates of depression than pre-transplant patients, have significantly higher rates of depression than the general population. Was it possible I could be depressed? A wave of guilt washed over me. I was depressed after receiving one of the greatest gifts of my life. Sure, I had three surgeries: transplant, peritoneal dialysis catheter removal, and a biopsy. I was not able to return to work or school. I was in pain most of the time from the recovery from the surgeries and muscle atrophy. I knew it was going to be difficult, but now it felt as though I had lost control over my mind. That mind, my support group, and my grandma’s home-cooked meals were what got me through all of this. Now, it felt as though I was trapped. I understood this amazing thing had happened to me, yet I was simultaneously reliving the most difficult moments of my past ten years – the moments that I never would wish on anyone. Since I had discovered it’s so common for transplant recipients to experience PTSD, depression and anxiety, I thought surely my transplant team at the hospital would have a plethora of resources available to help me. This, unfortunately, turned out not to be the case. In my next appointment with UC Davis, I talked to a social worker. That was the most UC Davis had to offer. When I asked for the opportunity to talk to a therapist, they told me that they didn’t have one for me to see, and none to recommend outside of the hospital. The social worker then informed me they wouldn’t be able to see me regularly. I was on my own to find a therapist who was qualified to help in what felt like a very specific need. I was astonished that one of the top kidney transplant facilities in the nation didn’t offer any mental health services post-transplant. This started a year-long journey looking for somebody with experience in chronic illness– someone who could help with the mental health struggles I was facing. I set up one appointment with a trauma specialist that my family recommended. During our visit, they told me they believed I had PTSD. At first, it was hard to accept. I did not believe them. I thought that was only for war vets and people who had gone through something truly traumatic. That wasn’t me. While my search for support continued, my mental health became more of a challenge. About one month after my first incident in Los Angeles, I learned that a player I coached in soccer was diagnosed with a rare auto-immune disease (unrelated to the kidneys). This news sent me into a severe depression that I was not equipped to get out of. When I finally overcame it, I knew–yet again–that I was in need of professional help right away. I set up a series of initial appointments with different therapists and went through a frustrating time. I had a hard time finding someone who took my insurance and who also had experience working with patients that had chronic health conditions and experienced the same mental turmoil that I had. My diagnosis of PTSD took a long time for me to accept, and even longer for me to begin meaningful treatment. I felt a lot of shame about the idea of my kidney transplant being labeled as a trauma. This was meant to be the solution to years of battling a difficult illness and now it felt like an extended part of the illness, which left me with a feeling of failure. What I didn’t know for the first ten years was that the “rock” that I had been was a defense mechanism–a way for me to survive the trauma in my life. I had just simply avoided processing it. This is why, after my second transplant, the pain that I hadn’t processed before was emerging in a way that I had very little control over. I got my first transplant eight years earlier, when I was 16 years old, but I lost it to a staph infection that put me in the hospital for three weeks and nearly killed me. I’d done a total of four years of dialysis before the two transplants (six months before the first transplant, and three and a half years before the second). I have done chemotherapy, high-dose IV prednisone, and a number of other treatments over the past ten years. The second kidney transplant was the tip of my PTSD iceberg, which I had ignored for all too long. I received the transplant on July 3, 2017. I stayed in the hospital for seven days after and in a hotel close by for another week after that. For four days in the hospital I had high fevers because of the immune suppressants that I was on. I had eight different IVs because of the iron treatments I was receiving. I had blood drawn every morning at 5 a.m. They removed a nerve block in my side while I was awake. It gave me terrible leg twitches. When I got to the hotel, I learned that the surgery had damaged a nerve near the incision, causing shooting pain in my groin anytime I tried to lay down past a 45-degree angle. Six weeks later, right when I was walking normally and getting into a regular sleeping routine, I had a surgery to remove my peritoneal dialysis catheter. It left me in bed for three days post-surgery. Another four weeks after that, I had my first kidney biopsy. This was the most minor procedure, but it still left me with some discomfort for about a week. My point is this: transplants are hard, long and invasive. Surgeries in and of themselves are traumatic, regardless of their purpose. Dialysis and treatments for kidney diseases are inherently traumatic for the entire support group, not just the person experiencing it directly. I’ve been so fortunate to have a comprehensive and almost global support group: my entire extended family, my inner circle, my two donors, friends, work colleagues, NephCure, COTA, nurses and doctors (some of whom I still stay in contact with), and so many people that I have only met once or twice. All of them have been incredible and they are the reason why I am the person I am today (and as mentally fit as I am). I have seen the toll this takes on them. My entire immediate family and I are all in therapy now because of the difficulty of this process–not just because of the second transplant. I think we all wish that we started therapy earlier, and together. I had very little therapy in the eight years leading up to my second transplant. The therapist I see now once told me, “People avoid or stop going to therapy when they need it the most.” For a long time, I turned a blind eye to therapy. I did as much as I could to avoid processing the extreme difficulty I was facing in my life. I did this until I was in so much mental pain that I was forced to take action. Don’t get to that point. Wherever you are in this journey, and quite frankly, if you’ve read this far, simply talking to somebody who has no connection to you and an expertise in mental health is something you need. You cannot and do not need to handle this on your own. Your support group cannot and does not need to handle this on their own. Even if you do not have PTSD, depression, anxiety, or anything of the sort, therapy can help you process the difficulties we all face from being forced to be kidney warriors. Caring for your mental health can help you live a more balanced life–a life filled with joy.” -Jeremy Bedig
You Can Change FSGS Treatment Options: EL-PFDD 2020 April 28, 2020 by Kylie Karley Externally led patient-focused drug development (EL-PFDD) meetings bring together patients and care partners, US Food and Drug Administration (FDA) representatives, pharmaceutical companies, and doctors who are experts in the particular disease. The goal is to hear from patients who have the disease, in order for the FDA and pharmaceutical companies to understand the patient experience. This year, NephCure Kidney International and the National Kidney Foundation are coming together to conduct an EL-PFDD meeting, on August 28, 2020, to inform the FDA about the patient’s perspective of living with focal segmental glomerular sclerosis (FSGS). The meeting will be held online. We invite anyone who has FSGS, lives with someone affected by it, or is interested in it to attend this meeting. This year’s EL-PFDD meeting on FSGS will be co-chaired by two NephCure Specialists, Drs. Laura Mariani and Suneel Udani. The two of them answer the following questions regarding the importance of patient attendance at the meeting in August. As a patient with FSGS, why should I consider attending this meeting? EL-PFDD co-chair and NephCure Specialist, Dr. Suneel Udani Because FSGS is rare, most people designing and evaluating the results of clinical trials, that test new medications, have not met anyone with FSGS. While clinicians taking care of patients with FSGS understand the impact the disease has on your lives, this impact is not something that can always be captured on a blood or urine tests, and therefore regulators who determine which medicine becomes available may not recognize the issues that patients face each day. This meeting is your chance to explain not only the impact of the disease, but also the limitations of our current therapies. Each patient’s experience is unique, so hearing from as many different people as possible is incredibly helpful. We encourage you to share not only what you would not only like, but also what you would expect from new treatments in terms of how they are administered, for how long the medication must be taken, the side effects, or anything else you think would be relevant to new treatments. Each segment of the medical community (clinicians, researchers, industry leaders) benefits from hearing your perspective so that the new treatments available truly meet the needs of the intended population—you. The EL-PFDD meeting is a unique setting where all these groups—patients, clinicians, scientists, industry, and regulators—are gathered together to listen. Therefore, your attendance and insight are dependent and vital to this meeting’s success. How does this meeting contribute to putting new medications for FSGS on the pharmacy shelf? EL-PFDD co-chair and NephCure Specialist, Dr. Laura Mariani The comments from the meeting can inform the FDA about the urgent need for new, more effective, and less toxic treatment options for FSGS. The FDA tries to bridge communication between patients and the medical community. The FDA aims to develop criteria that not only represents the effectiveness of therapies, but also determines if these therapies truly help people feel better. In gathering patient feedback, this meeting will help companies design better studies to assess the symptoms most relevant to patients and help the FDA interpret the results of those studies with the patient’s needs in mind. Why does the Food and Drug Administration want to hear from patients? The FDA recognizes that patients and their family members are the experts on what it is like to live with FSGS and to take the currently approved medications. This meeting can help the FDA better understand the impact of the disease and its treatments on patients. As a doctor, why do you believe the EL-PFDD is important? “As a physician, I have been frustrated with the treatment options for Nephrotic Syndrome since I learned what they were, how effective (or not) they are, and the side effects we ask patients to tolerate. However, for the first time in our history, there are more candidates for treatments and studies to investigate their impact. The potential for multiple new therapies has changed my perspective. Whereas in the past our bar for being excited for a new treatment was simply if it made an impact on abnormal lab tests, now we have to raise the bar to not only look at improving laboratory tests, but also how effective a treatment is at helping someone with the disease live better. We can never have that insight without the patient voice. Rather than hearing about patients’ experience after a new medicine has been approved, the EL-PFDD provides an opportunity for patients’ voices to truly shape the narrative and make sure that the approval process includes the perspective of those living with the disease and what is important to them.” -Dr. Suneel Udani “I want to be able to offer patients more effective and less toxic therapies for FSGS. To do that, we need to lower the barriers at every step of the drug development and approval process. Hearing directly from patients is the best way for our partners in this process to understand the urgency of need in this area and to help all of us improve the lives of patients living with FSGS.” – Dr. Laura Mariani To register for this year’s EL-PFDD meeting focusing on FSGS on August 28, 2020, please click here.
I Stay Home For: Keith April 23, 2020 by Kylie Karley Keith, a 4-year-old from New Hampshire, was diagnosed with Nephrotic Syndrome one year ago, in April 2019. Originally, Keith was responsive to steroids, but relapsed each time doctors tried to taper him off. In October 2019, he stopped responding to steroids altogether. Keith is currently on his third medicine and his family is hopeful this one will work. His mother, Jackey, shares their COVID-19 story. “I stay home for Keith. Our lives didn’t change as drastically as yours when COVID-19 came around. For the last several months we’ve already been wearing masks, secluding ourselves and working to stay healthy. Keith has Nephrotic Syndrome, a chronic kidney disease and has been in relapse since October. He hasn’t responded to a couple of treatments and is now on an immunosuppresant drug which puts him at greater risks for complications from something like COVID-19 but will *hopefully* finally put him into remission. You want to know something that will make you grateful? Spending time at Boston Childrens Hospital. We have spent a lot of time inpatient and outpatient and have met families going through unimaginable pain and suffering. Having to stay home should be a luxury! We still have to go to the hospital a lot but will continue to be careful and are SO thankful for our BCH family and for NephCure for bringing awareness to families like ours. #IStayHomeForNephCure.” Through her personal Facebook page, Jackey Bennett was able to raise more than $1,600 to support NephCure Kidney International’s COVID-19 Emergency Fund!
Clinical Trials and COVID-19: FAQs from Patients to Sponsors March 31, 2020 by Kylie Karley In response to the COVID-19 crisis, NephCure Kidney International has prepared a list of FAQs, solicited from patients in our community, to pharmaceutical companies sponsoring clinical trials. We urge sponsors, with patients currently enrolled in studies, to be proactive in your communications. This may be addressing these questions via email, phone conversations, orthrough in-person discussions. For our patient community, we are doing our best to provide these answers to you and/or direct you to the appropriate resources. As you review these questions, you will see that many of these require answers specific to your studies (i.e. the introduction of virtual clinic visits or offering reimbursement for alternative travel arrangements). I am worried about leaving my house to go to my scheduled appointment. What should I do? Assuming you are not exhibiting symptoms of the virus and are able to get to your appointment, we encourage you to keep all previously scheduled appointments. Should there be a change in operating procedures at your clinic, your healthcare provider should notify you in advance. Some clinics are offering virtual visits. Please contact your study coordinator for more information about your specific site. My state/city/county has placed restrictions on ‘non-essential’ travel. Do my study visits fall into this category? Like grocery stores and pharmacies, medical facilities and hospitals remain open. Clinical study appointments are essential to your overall health so you should plan to attend your scheduled appointments unless otherwise directed. Be sure to contact the study team immediately should you experience any symptoms of the virus at any time. Can I avoid coming to the clinic for study appointments during the COVID–19 outbreak? We encourage you to try to attend your study visits. These appointments will occur unless something changes at your clinic, in which case you will be notified in advance. Some Sponsors may move to virtual visits to protect the health of study participants. You can contact your study coordinator to further discuss your options. I am afraid to take public transportation given the number of people and concern over being exposed to the COVID-19 virus. Are there alternate ways for me to get to my appointments? This feeling is perfectly understandable during this time of uncertainty. If you can avoid public transportation, we strongly encourage you to do so. Should you choose to take an Uber, Lyft, or other mode of transportation to attend your appointments, the company conducting your trial will most likely reimburse you for the full amount. Be sure to contact your study coordinator before you make this decision so you can to fill out the appropriate forms for changing your mode of transportation. What happens if I miss a study visit? Can I just pick up at the next one? It is important for you to notify your study coordinator if you are unable to make an appointment. The coordinator can assist you with scheduling another appointment and/or help with travel arrangements if needed. However, we strongly encourage you to try to attend all of your regularly scheduled study visits. Why is it important for me to continue participating in the trial as scheduled? We are thankful to all the volunteers who are participating in our study. Clinical studies are developed with scheduled procedures and visits in mind from the beginning. For this reason, we hope that you will do your best to adhere to your study visit schedule to the best of your abilities. Questions best addressed by individual sponsors If I need to change my travel arrangements to my appointments, who do I contact? Is the study medication I am taking an immunosuppressant? In other words, am I immunocompromised right now? OR Does the trial medication put me at greater risk of contracting Coronavirus? What type of financial compensation can I receive if the Coronavirus affects my travel plans? If I am under quarantine, can I still participate in the trial? Who should I contact with questions? Can I have labs drawn and/or medication administered at home? Can I complete my study visits virtually through telemedicine visits? If I can get to my study visit, will face masks be available when I arrive?
COVID-19 Patient FAQs March 31, 2020 by Kylie Karley Does kidney disease put me at a higher risk? Patients with protein spilling kidney disease are at higher risk for moderate to severe illness from COVID-19, especially when kidney function is below normal. Many patients are on immunosuppressive medications that work by keeping the immune system less active and in turn, makes it harder to fight infections such as COVID-19. Those with advanced kidney weakness, or on dialysis also have weaker immune systems. You may also have high blood pressure and possibly other comorbidities. Which treatments are considered immunosuppressive medications? The following medications that are used to treat protein spilling diseases are immunosuppressive medications: ACTHAR Belatacept Cellcept (Mycophenolate mofetil) Cyclosporine Cytoxan (Cyclophosphamide) Imuran (Azathioprine) Prednisone, prednisolone (Steroids) Rapamune (Sirolimus) Rituxan (Rituximab) Tacrolimus (Prograf) I am not on immunosuppressive medications, but I am spilling protein in my urine. Am I still at risk and/or immune compromised? If you are actively spilling protein in your urine, your immune system is weakened and you are likely at higher risk of developing severe illness from COVID-19. Because the filtering units of your kidneys are not filtering properly, they are spilling all types of protein including immunoglobulins. Immunoglobulins, also known as antibodies, are proteins in the blood that help fight bacteria or viruses and their loss makes your immune system weaker. I am currently relapsing, should I wait to begin taking immunosuppressants until COVID-19 passes? You should discuss the best plan of action with your nephrologist because each patient is different. However, your priority (even during the COVID-19 outbreak) should always be to stop your protein spilling and protect your kidneys. If you generally respond to immunosuppressive therapy, it is likely a good idea to begin treatment. Again, please discuss the risks and benefits with your caregiver. I am currently in remission, should I consider stopping or lowering my immunosuppressive medication? During the COVID-19 outbreak, it is not recommended to stop or lower your medications. Stopping immunosuppressants can lead to rejection of a transplanted kidney or a relapse of protein spilling. You should never stop your medications without first speaking with your nephrologist first. There may be rare situations where medications can be reduced or stopped, but only under the care of your nephrologist. Should I stop taking my ACE inhibitor blood pressure medication? There have been some pre-clinical and clinical studies linking COVID-19 and the renin-angiotensin system. This has led to speculation as to whether use of ACE inhibitors or Angiotensin Receptor Blockers (ARB) increase the risk of moderate to severe illness in COVID-19; NephJC and other professional societies have found that the evidence is insufficient, and in some cases conflicting—some data even suggesting that ARBs may be protect the lungs in viral pneumonia. Patients who are taking ACE inhibitors or ARBs should not change their medication unless told to do so by their nephrologist. To read more about ongoing developments on this topic visit http://www.nephjc.com/news/covidace2 Will there be medication shortages? There will likely be some drugs on backorder due to COVID-19. It’s difficult to know which medications will be impacted. It’s important not to panic or hoard medications. Call your doctor and/or pharmacy to see if you can get medications filled early or in 3-month supply. It may be best to begin using a mail-in pharmacy during the outbreak. You can monitor information regarding specific drug shortages here. Should I Shelter in Place? The key point to remember is that you cannot get the infection without exposure to someone who has the infection. Therefore, you should make every effort to stay at home and limit your exposure. The degree of quarantine may differ depending on where you live. The best plan is to avoid going out for non-essential reasons and when you do to limit exposure to others and practice strict hand hygiene and clean things that you may have touched before washing your hands (such as your phone and your keys) Getting fresh air and exercise close to your home, with proper social distance from others is certainly safe and may help cope with the stress arising from this situation. Should I go to my doctors’ appointments? It is important to first call your doctor to discuss if you need to physically go to your appointment. Many clinics are offering telemedicine, virtual appointments over the phone or on your computer. If your appointment requires testing or some form of physical treatment, you should discuss if it is essential or if you can reschedule for a later date. I need labs drawn, where is the best place to go? Many patients require frequent labs to stay on top of their care. You should contact your doctor to determine if your scheduled labs are required now, or if they can wait a month or two. If you must have labs drawn during the COVID-19 outbreak, consider going to a small outpatient lab rather than a lab in the hospital. Always use good hand hygiene and assure the phlebotomist does as well. Schedule an appointment if possible, go first thing when the lab opens and wait in your car for your turn, to limit your exposure. Is it safe for immune compromised patients to order carry out meals? Many restaurants are closed to the public to enforce social distancing but are still open for carry out. There is some risk in ordering food from a restaurant because employees may be infected with COVID-19, but there appears to be other a very small risk of food-related transmission. Should you choose to order carry out, be sure it’s from a valued, trusted business, you can transfer the food from the delivered containers to your own plates and you reheat the food prior to eating. Other precautions include paying over the phone and asking them to put the meal in your trunk instead of passing the food through your window. Once home, repeat hand hygiene after assuring you have cleaned all surfaces. How can I combat anxiety and depression during this time? The fears, worry, and stress that come with being at increased risk for moderate to severe COVID-19 illness are real and can lead to even greater amounts of anxiety and depression. Being separated from friends and loved ones while social distancing can also cause feelings of isolation and loneliness. We want you to know that you are not alone in your struggles. NephCure is offering a 4 week virtual series about “Cultivating Resilience During Anxious Times: Strategies for Staying Steady while Navigating Covid19” Please join us on Thursday, March 26, April 2, 9, & 16 at 7:00 PM EDT via https://zoom.us/j/890400605 We also offer several ways to connect with others going through similar journeys with protein spilling kidney diseases at NephSpace our online support community and direct connections through our Patient to Patient Connections Program. To talk with someone immediately, contact our Patient Advocate, Kelly Helm at khelm@nephcure.org or 610-540-0186 x38.
COVID-19 and kidney disease March 30, 2020 by Lauren Eva Your health and safety are our number one priority.
Spotlight On: Savannah Dauster, NephCure’s New Community Development Coordinator March 27, 2020 by Kylie Karley With the recent establishment of the Community Development Department at NephCure Kidney International, we’d like to introduce you to face you may already recognize. Our very own Savannah Dauster has made the transition within the organization to Community Development Coordinator. She explains she’s looking forward to working with our volunteers across the country and continuing to provide information and resources that will truly help our NephCure family. Get to know her a little bit more! NephCure Kidney International: How long have you worked for NephCure and what roles have you held? Savannah Dauster: I starter at NephCure in June of 2018 as the Office Administrator, and I just recently transitioned into my new role as Community Development Coordinator. NephCure: You’ve recently been promoted to the Community Development Department to help support our Regional Volunteer Communities. What are you looking forward to the most in this new role? Savannah: One of my favorite things in the world is listening to people and asking questions, so I think the thing I most look forward to is just that. The fact that this new position will afford me the opportunity to get to know and support our patients and volunteers better is super exciting to me! NephCure: Why are volunteers so valuable to an organization like NephCure? Savannah: NephCure is nothing without its incredible volunteer base, especially because Nephrotic Syndrome is such a rare group of diseases. Having “boots on the ground” in so many regions of the country is invaluable to our efforts. Our volunteers reach and support new patients in ways that our staff never could! NephCure: What excites you most about the future at NephCure? Savannah: Probably the fact that our goal is so close to being accomplished! NephCure has come a really long way in the last twenty years, and I am happy and proud to be here at a time when a treatment might finally make it into the hands of our patients. NephCure: How do you like to spend your free time? Savannah: I particularly love reading and binge watching Netflix, playing board games with my husband, and spending time with my church!
COVID-19 Germs Experiment for Kids! March 17, 2020 by Kylie Karley As schools are closing and some parents are working from home more than they regularly do, you may find your family spending more time together than before. Here’s a fun experiment to do with your kids to explain the importance of washing our hands amid the Coronavirus pandemic. What you’ll need: Pepper (which acts as the germs) Bowl of water (which acts as surface of our skin on our hands) Soap Step 1: Shake pepper on top of the water. Give it a good coat! These are the germs that are on the surface of our skin. Step 2: Have your child stick one fingertip directly into the bowl of water with pepper or “germs” on it. You’ll see the germs stick all over your hand when you don’t wash your hands! Step 3: Rub a clean fingertip in soap. Make sure it is coated well. Step 4: Stick the finger with the soap on it into the “germy” water and watch the germs spread out across the water! This is because the soap breaks down the virus!
Guidance on COVID-19 for Pediatric Kidney Disease Patients March 13, 2020 by Kylie Karley We know there are a myriad of questions surrounding COVID-19 and pediatric kidney disease during this unpredictable and unprecedented time. The follow list of FAQs were put together on March 12, 2020, in consultation with various NephCure Specialists who focus specifically on pediatric nephrology, to help you and your child maneuver through this pandemic in the safest possible way. As always, please consult with your nephrologist for specific guidance for your child. Should parents pull their immunocompromised children from school? Monitor the information from the CDC on COVID-19, as well as your local hospital’s website. These are your best sources of up-to-date information given the changing situation and variation in different locations. Doctors are currently most concerned about transplant recipients, dialysis patients, and children receiving moderate to high doses of immunosuppression, though we don’t know really know much about the increase in risk just yet. The situation is changing rapidly, and many schools are already closing. If your child’s school is currently open, you can generally send your child to school. If your child has recently undergone a transplant and is on high-dose immunosuppressants, he/she should probably stay home for now. As always, speak with your child’s nephrologist for specific instructions. They are an excellent source of information if you have ongoing questions. This situation is changing day-to-day, and this guidance may quickly become outdated. A good general rule is to follow the advice from the CDC that’s been issued for the elderly. Also check your local government’s website for information that may be more specific to your region. Should patients stop taking their immunosuppressants? You should never stop your child’s immunosuppressant medications unless you speak with your child’s nephrologist. Stopping medications can lead to rejection of a transplant or relapse of Nephrotic Syndrome. There may be rare situations where the immunosuppressive medications can be reduced or stopped, however please consult with your nephrologist first. How can patients who must go to a hospital or other center for treatment (like dialysis, plasmapheresis, etc.) protect themselves from exposure? Practice the general recommendations to limit spread: Handwashing, limit face touching, limit touching public surfaces (like handrails), stay away from other people as much as possible, etc. Pediatric-only centers will be better, if possible. Minimize sitting in waiting rooms and time spent in hospitals as much as possible. Clinics and dialysis centers have most likely developed plans to deal with the spread of COVID-19, including enhanced screening, separating patients into risk groups, etc. Routine medical center visits are probably safer than urgent care or emergency room visits. When should parents call their child’s doctor? In general, you should call for the same issues that would typically prompt you to call your nephrologist. COVID-19 may cause pneumonia and heart problems so call immediately if your child develops respiratory symptoms beyond a mild cough. It is best to call your doctor first, but you may need to take your child to urgent care or the emergency room if the symptoms develop rapidly and are concerning. Symptoms of COVID-19 infections are similar to those of a lower respiratory infection. Use the following guidance to determine whether or not your child needs medical care: Respiratory symptoms beyond a mild cough: difficulty breathing, rapid or deep breathing, or a severe cough Shortness of breath from continued coughing Refusing liquids with decreased urine frequency Crying without ability to be consoled Fever that is not responsive to fever reducing medications Behavior that is not normal for your child Bringing your child to an ER or urgent care “to get tested” or for minor symptoms is currently not recommended since many sites are not offering testing and there is a risk of exposure to COVID-19 and other serious infections. These recommendations are and will remain fluid. For the most up-to-date information, reference your local hospital’s website, your local government’s website, and guidelines from the CDC for high risk populations and children. These guidelines were generated on March 12, 2020, in consultation with: Larry Greenbaum, MD, PhD, Emory University Sangeeta Hingorani, MD, MPH, Seattle Children’s Hospital Elaine Kamil, MD, Cedars Sinai Medical Center Frederick Kaskel, MD, PhD, FASN, Children’s Hospital at Montefiore Kenneth Lieberman, MD, Hackensack University Medical Center Joshua J. Zaritsky, MD, PhD, AI duPont Hospital for Children
Special update on Coronavirus (COVID-19) for kidney disease patients March 10, 2020 by Lauren Eva NephCure is closely monitoring the situation with the Coronavirus (COVID-19) as it continues to develop worldwide. The World Health Organization (WHO) has declared a Public Health Emergency of International Concern over the global outbreak of the coronavirus, and on January 30th, Health and Human Services Secretary Alex Azar II declared it a Public Health Emergency in the United States. According to the most recent information from the United States Centers for Disease Control and Prevention (CDC), the majority of people who are exposed to the coronavirus will experience mild symptoms, and the likelihood for most people to develop serious illness after exposure is thought to be low. However, older individuals (approximately age 65 and older) and individuals of all ages with underlying health conditions (like kidney disease) or compromised immune systems seem to be at higher risk of developing serious COVID-19 illness. If you are taking medications like prednisone (steroids), cyclophosphamide (Cytoxan), cyclosporine (Neoral), mycophenolate (MMF, Cellcept, Myfortic), prograf (Tacrolimus), rituxan (Rituximab), or any other immunosuppressant drug, your immune system is likely compromised. Prevention is key. We urge you and your immediate family members to take the following precautions now to prevent or delay the spread of the coronavirus and limit your personal risk of exposure to it. Wash your hands frequently. Regularly and thoroughly wash your hands with soap and water for at least 20 seconds, especially after using the restroom, blowing your nose, coughing, or sneezing, or having been in a public place. If soap and water are not available, use a hand sanitizer that contains at least 60% alcohol. Why? The virus can be transferred in bodily fluids, including saliva and stool. Washing your hands with soap and water or using alcohol-based hand sanitizer kills viruses that may be on your hands. Avoid touching your eyes, nose and mouth. Why? Hands touch many surfaces and can pick up viruses. Once contaminated, hands can transfer the virus to your eyes, nose or mouth. From there, the virus can enter your body and can make you sick. Keep space between yourself and others. Maintain at least 3 feet of distance between yourself and anyone who is coughing or sneezing. Why? When someone coughs or sneezes, they spray small liquid droplets from their nose or mouth which may contain virus. If you are too close, you can breathe in the droplets, including the COVID-19 virus if the person coughing has the disease. Practice respiratory hygiene. Make sure you, and the people around you, follow good respiratory hygiene. This means covering your mouth and nose with your bent elbow or tissue when you cough or sneeze. Then dispose of the used tissue immediately. Why? Droplets spread virus. By following good respiratory hygiene, you protect the people around you from viruses such as cold, flu and COVID-19. Clean and disinfect your home. Practice routine cleaning of frequently touched surfaces (for example: tables, doorknobs, light switches, handles, desks, toilets, faucets, sinks & cell phones) using a regular household cleaning spray or wipe. Why? Current evidence suggests that novel coronavirus may remain viable for hours to days on surfaces made from a variety of materials. Cleaning and disinfection is a best practice measure for prevention of COVID-19 and other viral respiratory illnesses in households and community settings. Avoid crowds as much as possible, cruise travel, and any non-essential air travel. Why? Your risk of exposure to respiratory viruses like COVID-19 may increase in crowded, closed-in settings with little air circulation if there are people in the crowd who are sick. During a COVID-19 outbreak in your community, stay home as much as possible to further reduce your risk of being exposed. This information has been collected from the CDC and the WHO and has been reviewed by NephCure’s Board Medical Directors. In addition, you may want to contact your healthcare provider to ask about obtaining extra necessary prescription or over-the-counter medications to have on hand in case there is an outbreak of COVID-19 in your community and you need to stay home for a prolonged period of time. If you have additional questions related to you or your loved one’s health, please contact your primary healthcare provider or nephrologist and follow their guidance. If you would like to be connected to a NephCure Specialist in your kidney disease, please refer to our list of experts here. If there are no specialists in your area, many of these doctors will provide a health consultation via phone. NephCure will continue to monitor world and US-based health guidance, and if new information becomes available that pertains to our rare and chronic kidney disease community, we will provide an updated statement. Additional information can be found directly from the World Health Organization or the Centers for Disease Control and Prevention: https://www.who.int/emergencies/diseases/novel-coronavirus-2019 https://www.cdc.gov/coronavirus/2019-nCoV/summary.html