Sharing the lifesaving power of transplant

By Matthew Cooper, M.D., and Lara Tushla

While COVID-19 has put many things on hold (school, work, travel and a multitude of life celebrations), it has not slowed down kidney disease. In fact, the rates of Acute Kidney Injury AKI) have increased dramatically and many of these AKI patients could develop chronic kidney disease (CKD) down the road.

As the pandemic spread across the country, many transplant programs dramatically decreased activity levels at all stages, from initial visits to the transplant center for a discussion about transplant  options, to evaluation testing, to living donor testing, to transplant surgery, as well as follow-up visits. There are many good reasons for implementing those limitations, even though organ transplant has remained one of the non-elective essential surgeries.

Recently several members of the NKF Public Policy Committee had a call with representatives from the Health Resources and Service Administration’s (HRSA) Division of Transplant (DoT). Listening to our colleagues Mary, Derek, and Haley tell their stories of the impact that dialysis and transplant have had on their lives was a powerful reminder that while there remain a lot of unknowns about the COVID-19 virus in the context of transplant, not receiving a timely transplant brings its own set of unknowns.

In a perfect world, the decision to accept a specific kidney from a specific donor at a specific time would be made between patients and their healthcare teams. While kidney transplant can be life-enhancing and prolonging, it is clear that those on the Public Policy Committee who live on the “patient” side of things see it as lifesaving in very real ways. The life that they have had since they received their transplants would not have been possible without that gift.

While HRSA’s DoT group made it clear that they were in “listening mode,” they were clearly impacted by the lived experiences of our members. We all know that people living with kidney disease are not just numbers on a chart or outcomes statistics but possess personal stories that can be so much more impactful.

From the literature we know that people who have a functioning transplant:

  • On average live 2.4-2.9 times as long as their gender and age matched peers receiving dialysis.
  • Enjoy significantly higher quality of life than people receiving dialysis.

The patient advocates who joined the call shared that in their post-transplant life they were able to:

  • Continue their education and build a career focused on advocating for others.
  • Raise a family and celebrate a multitude of wonderful life events.
  • Pave the way for other people with CKD by sharing hard learned lessons of the CKD world.
  • Keep the issues people with CKD face in front of patients, providers and elected officials.
  • Take nothing for granted. Cherish every day.

There is a parable about a group of blind people who are led to different parts of an elephant. They cannot tell what it is because the only feel their part – the one touching its side thinks it’s a wall, the one touching the trunk thinks it’s a snake; the one touching the leg thinks it’s a tree. Only by sharing what they have learned do they realize it is an elephant. When the NKF developed the Public Policy Committee, it brought together a group of people who share what they have learned including their needs, wishes, challenges, perspective and expertise, in order to more fully see a given situation so that a comprehensive plan can be developed.

Matthew Cooper, M.D., is the Director of Kidney and Pancreas Transplantation at Medstar Georgetown Transplant Institute and Professor of Surgery at Georgetown University School of Medicine. He serves on NKF’s National Board of Directors and is a member of NKF’s Public Policy Committee.

Lara Tushla is a kidney and pancreas social worker at Chicago’s Rush University Medical Center. She has experience in many phases of CKD including previous work as a dialysis social worker and serves on NKF’s Public Policy Committee.

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Pushing Forward

By Kevin Longino, CEO of National Kidney Foundation and kidney transplant patient

COVID-19 isn’t going anywhere yet, and neither are the health disparities which so adversely affect minority communities. It’s essential that we plan to protect kidney patients over the long-term and act now to affect real change.

Planning for the long-term

In a recent letter sent to the Centers for Medicare and Medicaid Services (CMS), NKF urged the Administration to consider extending and building upon the flexibilities and waivers they’ve put in place for kidney patients over the past few months to help keep them safe during the pandemic. We urged CMS to continue coverage for telehealth visits for all kidney patients, including transplant and dialysis patients, and allow patients to use any form of technology available to them for telehealth visits. We also urged them to provide coverage for at-home lab draws for kidney patients, transplant recipients and living organ donors, and also allow patients diagnosed with an acute kidney injury to receive home dialysis, instead of having to go to a center. These are all important for the long haul, until there is a coronavirus vaccine approved for immediate use.

The disproportionate risk of developing severe illness from COVID-19 is something kidney patients have to live with every day and it’s critically important that we continue to protect them. This week, CMS issued guidance on the reopening of healthcare facilities and spelled out what patients should know. CMS advises kidney patients to continue to stay home, avoid crowds and self-isolate due to their increased risk of developing severe illness from COVID-19, which only further validates the concerns NKF has been advocating for on extending flexibilities and waivers.

Final Thoughts

The past two weeks have been challenging for our nation, but especially for our African American family members, friends, colleagues, and neighbors. Coupled with COVID-19, which has so disproportionately affected minority communities, the senseless racial violence over the past few weeks has significantly added to their burden. Last week, I shared NKF’s statement on racial violence and disparities. We continue to stand united in helping to overcome the health disparities that exist for all minority communities but know that we have a long way to go. We will need your help to ensure that all patients can access high quality care. Please consider becoming an advocate today and help us drive the necessary change.

Please continue to check our COVID-19 resource page where we post all the latest information on issues facing our community in English and in Spanish. If you have questions or need support, please contact our toll free patient information help line by calling (855) NKF-CARES, (1-855-653-2273) or by email nkfcares@kidney.org. And join our free online discussion forums.

Be well and stay safe.

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Managing Routine Blood Tests During COVID-19

By Risa Simon, NKF patient advocate and founder of The Proactive Path and Transplantfirst Academy; and Michael Stevenson, NKF National Board Member and patient advocate.

As kidney patients we adhere to routine lab draws — come rain or shine. But add COVID-19 into the mix and the mere thought of standing in line or being seated next to others can give pause to the best of intentions.   

On the other hand, imagining the impact of postponing blood tests can be equally concerning. This no-win predicament has caused some kidney patients to question their adherence to specific timelines dictated by their doctors.

What if each medical facility proactively communicated their pledge to follow strict COVID-19 safeguards? Could a heightened awareness and observable evidence ease patient apprehensions?

Let’s examine one patient’s recent visit to the lab. Mike Stevenson, a kidney transplant recipient and NKF advocate from Columbus, Ohio, was very concerned when his pharmacy told him that he had to show evidence of current labs before they would refill his immunosuppressant medications. While Mike was anxious about going in for labs, he didn’t have much choice.

Much to Mike’s surprise, he reported, “I was instructed to send a text upon my arrival and wait in my car until they directed me to enter the lobby wearing a mask.” Mike also mentioned that he never saw other patients when he entered, and his phlebotomist was the only other worker in the lab while he was there. He also noted that his phlebotomist was wearing gloves and a mask. All in all, Mike’s experience was much better than he imagined — a wonderful example of how strategic safeguards can dispel patient fears.

Understanding “Safe Practices”  

Protective practices can go a long way in easing patient fears. That said, before pushing back on timely draws, call your lab and ask them to explain their COVID-19 safeguards. While infection control practices have always been important in the lab, they should proudly announce that they are following CDC guidelines for COVID-19, without exception.

Nonetheless, it’s our job to specifically ask how our labs are complying with COVID guidelines. Are they controlling social distancing in their waiting rooms? Are their phlebotomists wearing protective masks and gloves? Do they require patients to wear masks? How many patients are permitted into the lab at one time?

If you are not convinced your experience will be as smooth or as safe as Mike’s, we have a few suggested steps you can follow. First, after you confirm your lab is offering COVID-safe protections, make sure they haven’t added COVID testing at their site. Second, evaluate their responses to your questions. If they can’t give you the “peace of mind” you were looking for, consider another location or company—or explore remote alternatives.

Home Sweet Home

A remote approach would be to have your blood drawn from the comfort of your home using a mobile lab service. This is where a certified phlebotomist is scheduled to come to your home to draw your labs from your kitchen table, bedside, or while sitting in your easy chair listening to music or watching TV.

Prefer the phlebotomist never enters your home? Simply request that they meet you on your patio, porch, driveway—or inside your garage. You can even use your car’s window as a workstation by positioning yourself inside your car with your arm resting over the open-window’s ledge.

Whether you decide to have your labs drawn from the inside or outside of your home, never assume that the phlebotomist will be fully prepared for your unique situation. The goal is to ensure they understand your preferences and can safely accommodate your requests.

Communication is key and must work both ways. Be sure the lab has explained their account set up procedures, associated fees, and self-pay requirements. Mobile “draw-only” fees aren’t always covered by medical insurance—and fees can run about $65 per home visit. Be sure you are aware of associated fees to avoid surprises.

Remember: mobile labs often also visit nursing homes, so interview several companies to ensure the one you choose to use can offer you the best protection.

Keep Yourself Safe!

As the pandemic continues to run its course and states reopen their economies, look after your health! Staying safe is the most important thing you can do. If you need more advice or support, please check NKF’s COVID-19 resource page where they post all the latest information on issues facing the kidney community and watch their Facebook Live discussion series. Consider also contacting NKF’s patient helpline at (855) NKF-CARES, (1-855-653-2273) or nkfcares@kidney.org.

Risa Simon is a preemptive kidney transplant recipient who will be celebrating 10 years of transplant success (and going strong) on June 8, 2020. In addition to volunteering as an NKF peer mentor and advocate, Risa is the founder of The Proactive Path and Transplantfirst Academy where she inspires fellow kidney patients to proactively secure their best life possible –the life Risa now lives. The one word that best describes Risa: “Grateful.”

Mike Stevenson received a kidney from his brother in 1996 after being diagnosed with glomerulonephritis and has been a proponent of trying to cure chronic kidney disease since. Mike serves on the Board for the Central Ohio, division of the National Kidney Foundation and also serves on the National Kidney Foundation Board.

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COVID-19, Kidney Disease and Minority Communities: Addressing the Disparities

By Kevin Longino, CEO of National Kidney Foundation and kidney transplant patient

You’ve been reading in my blogs about how COVID-19 is causing acute kidney injury in people with no history of kidney disease, and the devastating toll the virus takes on kidney patients, especially transplant patients. But COVID-19 is unduly devastating to minority communities and NKF has been working to put a spotlight on it to drive change.

Finding the Answers

Yesterday, along with the NAACP, NKF hosted a briefing for Congressional staff on Kidneys and COVID-19: Navigating Health Disparities in Minority Communities. A distinguished panel of experts discussed some of the reasons why minority communities are so disproportionately affected by coronavirus and outlined what we can do to help address these challenges.

First, the facts on minority communities and kidney disease: African Americans are 13% of the U.S. population, but represent 32% of those with kidney failure. Hispanics and Native Americans are two times as likely as Caucasians to develop kidney failure. The two main causes of kidney disease are diabetes and high blood pressure, which are more prevalent in African American and Hispanic communities. People facing housing insecurity are three times more likely to develop early kidney disease. Low income individuals are twice as likely as high income individuals to develop kidney failure.

What about the risks related to COVID-19?

During her presentation, Francesca Weaks, Policy and Research Manager at the NAACP discussed that in some states African Americans are six to seven times more likely to die from COVID-19 than white residents.  In states like Missouri and Michigan, the disparity between the percent of population African Americans represent versus the percent of those diagnosed with COVID-19 is nearly 30%.  Nationwide, African Americans represent 12.9% of the population, but have suffered 25.1% of deaths – roughly double their population share, among all American deaths where race and ethnicity is known.

What Can We Do?

Dr. Deidra Crews, Associate Professor of Medicine, Division of Nephrology, and Associate Director for Research Development, Johns Hopkins Center for Health Equity offered some possible reasons for the alarming impact on minority communities such as a lack of access to basic resources including food, water, shelter, and transportation; suboptimal housing conditions; employment in essential jobs with limited protections; lack of access to healthcare services; mistrust of institutions due to discriminatory experiences.

While this is a complex issue, there are some specific strategies NKF is advocating for right now to help. We’re urging the federal government to provide quality, disaggregated data on all tests, hospitalizations, discharges and deaths from COVID-19 so we fully understand the scope of the problem; ensure priority testing, contact tracing, vaccination, and funding to high-risk and minority communities and kidney patients; support long-term investments in public health infrastructure in traditionally under-served communities; and increase funding for kidney research and awareness. While we don’t have all the answers, we’re determined to help find some of the solutions.

Ask Questions Live Today

If you’re interested in learning more about  how COVID-19 is affecting minority communities, NKF is also hosting a Q&A webinar/Facebook Live today at 3:00PM ET. Ask questions live as an expert panel discusses the latest updates on the COVID-19 virus and how it is affecting African American and Hispanic communities, including are there genetic or other factors that make minority communities more susceptible to the virus; and what you can do to protect yourself.

Final Thoughts

COVID-19 has brought so many challenging issues to the forefront, and the issue of health disparities facing minority communities is one of the most difficult. And COVID-19 now intersects with kidney disease as disproportionately affecting those same communities. For my part, I will continue to steer NKF towards a long-term and focused outreach to communities at risk for developing kidney disease and the devastating complications which accompany it. This is just the beginning; I hope you’ll join me on the journey.

Please continue to check our COVID-19 resource page where we post all the latest information on issues facing our community in English and in Spanish. If you have questions or need support, please contact our toll free patient information help line by calling (855) NKF-CARES, (1-855-653-2273) or by email nkfcares@kidney.org. And join our free online discussion forums.

Be well and stay safe.

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My experience with COVID as a kidney patient

By Michael Phillips, Transplant recipient and Kidney Advocacy Committee member

I was looking forward to bringing some major changes to my family’s lives this year, including moving for a new job. I was also so excited about attending my first Kidney Patient Summit to advocate for kidney patients in Congress. I was excited to visit with my brother and surprise our parents for our father’s birthday in March. All that instantly changed with the pandemic.

I am a kidney transplant recipient, which I was blessed to receive on January 6, 2019, at Northwestern Medicine. A year later, I received great news that my kidney was functioning well and that I would not have to see the transplant team until 2021.

On March 7th, my spouse & I attended a family birthday party. Later that week, I saw a notice on our family chat that one of my cousins wasn’t feeling well. Then my spouse stated he was not either and started showing symptoms that included sore throat, a chill and tiredness. Later that week, he said he needed to go to the emergency room. I was so nervous, because as a transplant recipient, I was not going to be able to go in with him. I had to drop him off at the emergency room door. That was one of the hardest things I had to do in the 19 years that we have been together.

We live about five minutes from the hospital, so I went home to wait for a phone call. First, they checked to make sure he did not have the flu. They then administered a COVID-19 test and told him to quarantine for 14 days.

Quarantining is quite a task when you have a teenager and live in a two-bedroom apartment in Chicago. So, we did the best we could with our son in his room and me sleeping in the living room. We wore masks, washed our hands and stayed away from each other. The following week, as my transplant team was following up with recent patients, I started to develop symptoms as well. I was fatigued, restless, had no appetite, chills, etc.

My doctor said I might have COVID-19 and that I needed to come to the hospital to be tested. They also told me to bring a few days’ worth of clothes because they might keep me to monitor me and my kidney. They took my temperature, checked my oxygen level and gave me the test for the flu and COVID-19. It took two days for us to learn I had tested positive. I was so glad that the hospital sent me back home, but then our son also started showing symptoms as well.

A few days went by and my spouse was having trouble with a temperature of 104. I took him to the hospital again and I came back to wait for his call. I cried because I was so scared. He called to tell me what was going on. He was having shortness of breath and his oxygen level was at 78%. My husband has diabetes and he was on the verge of going into a diabetic coma.

There was also concern about me as a transplant recipient, even though both our son and I had a very mild case compared to my husband. The concern from my family and friends was heartwarming and overwhelming. There are still times that I don’t know how to express my feelings and gratitude to my family and friends for their support and love.

I am here to report we all have recovered quite well. I am fortunate to say that we are still able to salvage one of those major changes, relocating out of state for a new job. I count myself lucky to have done as well as I did. I lost a relative to COVID-19 and other several family members contracted the virus.

Since I recovered, I have been saddened to learn about the outsized impact that COVID has had on minority communities, as well as rural and poorer Americans, and how many who contract COVID-19 are also developing acute kidney injury (AKI). New data suggests that the mortality rate for kidney transplant patients from COVID-19 is a staggering 30% and that AKI is occurring about 9%of all coronavirus patients, many of whom now need dialysis.

African Americans and Latinos, particularly, have been horribly affected by COVID-19. In Georgia more than 80% of hospitalized patients were African American and mortality rates in Illinois, Michigan, Missouri, Arkansas and Indiana are twice as high among African Americans. In Kansas and Iowa, the infection rate was three times higher for African Americans and Latinos, respectively. Because of this, I am grateful to have the opportunity to share my story at a Congressional briefing later this month hosted by the National Kidney Foundation in coordination with the NAACP and other groups on health disparities around COVID and kidney disease.

As a kidney patient who had COVID-19, I ask my fellow patients to please take this seriously and follow the advice of health experts, their doctor and trusted resources like the National Kidney Foundation. There are many great resources for you to reference, such as NKF’s COVID-19 webpage and Facebook Live events. Please wear your masks, limit your exposure to crowds and quarantine yourself as much as possible.

We still have suffering from COVID-19 in many parts of the country, so let us pray for one another and put differences to the side. It’s time for unity. COVID-19 is nothing to play with and it affects people of all races, economic backgrounds, and those healthy and chronically ill.

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Grateful and 16 years Kidney Strong

By Kevin Longino, CEO of National Kidney Foundation and kidney transplant patient

This weekend marks Memorial Day, a traditional lake or beach weekend with all that this entails. It’s a time when we express our gratitude to the Veterans who have so nobly served us all to safeguard the freedoms we’ve come to count on. But this Memorial Day weekend will be a challenging one for all Americans, and especially for kidney patients.

Policies to protect patients

With the last remaining states reopening in time for the long weekend, it increases the risk to a kidney patient population especially vulnerable to COVID-19 infection due to compromised immune systems and multiple comorbid conditions such as diabetes, high blood pressure and heart disease, which increase their risk for COVID-19 complications.

In a detailed letter sent today to the U.S. Department of Health and Human Services, the National Kidney Foundation (NKF) and the American Society of Nephrology (ASN) urged the Administration to address the unique needs of kidney patients as the country reopens. Together, we called upon the Administration to implement a set of recommendations regarding COVID-19 testing, supplies and vaccination, dialysis, elective surgeries, organ donation, transplantation, and drug supplies.

We are grateful to the Administration for all they have done to protect patients during the pandemic, and I hope that the recommendations we put forward will offer an opportunity for safely reintegrating kidney patients into their communities during the reopening phases now taking place.

16 Years Kidney Strong

I’m not only feeling grateful to our Veterans this weekend who sacrificed their lives to keep our nation safe; I am also grateful to a family I will never know who made a sacrifice and saved my life.

I am 16 years kidney strong thanks to a deceased donor family who, despite their extreme grief, donated their loved one’s organs so that others, like me, could live. There is not a day that goes by when I am not grateful to this family for the kidney that has allowed me to live dialysis free for 16 years. I know I advocate a lot for increasing living and deceased organ donation in these blogs and elsewhere, but it’s because I am so grateful. I am also extremely aware that 12 people die every day waiting for a kidney. So, until every kidney patient who wants a transplant can receive one, I’ll keep at it.  I hope you’ll stand with me.  

Please continue to check our COVID-19 resource page where we post all the latest information on issues facing our community in English and in Spanish. If you have questions or need support, please contact our toll free patient information help line by calling (855) NKF-CARES, (1-855-653-2273) or by email nkfcares@kidney.org. And join our free online discussion forums.

Be well and stay safe.

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There’s no place like home for dialysis

By Melissa Bensouda, Kidney Patient and NKF Kidney Advocacy Committee Member

Melissa Bensouda

My appreciation for the phrase “There’s no place like home” has reached an entirely new level over the last six weeks of quarantine. Like many in the U.S., my initial thoughts of the COVID-19 pandemic in the early stages were centered around typical survival needs of food and water. However, as the days passed and the heat map of reported cases and deaths expanded across America, I was quickly reminded of the additional medical precautions that define “survival” for my family.

I originally chose nocturnal home hemodialysis because it allowed me to continue working full time and follow a more liberal diet. Don’t get me wrong, the same reasons apply 16 years later but the benefits of home dialysis right now are clearer than ever. It also gives me the comfort of not worrying about the risk of contracting the virus by dialyzing three times per week in-center, where human contact is not only inevitable but necessary.

I still have monthly appointments with my nephrologist, social worker, nurse and dietitian to review labs and treatments for the month, but all of this is now done through telehealth video calls to keep the staff and me safe. These accommodations, in addition to working from home, help allow me to preserve the limited energy I have so I can focus on staying healthy, online schooling for my kids, dialysis and advocacy.

New and current patients will need close and practical guidance on what success can look like. Rather than it being seen as another overwhelming task that further complicates their routine and depletes their energy, they’ll need to understand the benefits that can be achieved. Patient engagement will be key to shifting the patient mindset from one of just receiving a treatment to that of empowerment to drive their own health outcomes. I firmly believe this will be such a refreshing shift for patients, like it has been for me.

Last July, the President signed an Executive Order to launch the Advancing American Kidney Health initiative. One of the goals is to reduce the number of patients dialyzing in-centers through promotion of home dialysis and increased transplantation. The medical impact of COVID-19 on dialysis patients and its rapid spread across the U.S. provide even further backing to support this need for greater utilization of home dialysis. The question is now about execution.

This is where I particularly appreciate the leadership that NKF has been providing to make home dialysis more accessible to other patients who want to transition to it. They have been at the forefront by advising CMS and Congress on policies that will help more patients access home dialysis, especially during the COVID-19 crisis.

At the end of the day, before settling down on dialysis at home, I sit on my back porch and reflect on how grateful I am to have been empowered to care for myself and how I can do my part to encourage the same game-changing experiences I’ve had on home dialysis.

Melissa Bensouda was born and raised in Kansas City, MO and recently relocated to Austin, TX.  She began dialysis in 2002 and received a transplant in 2012 that lasted four years.  Melissa has since resumed home dialysis while actively pursuing a transplant.  She works full time in the financial services industry and in her spare time enjoys advocating for kidney patients and traveling with her children and granddaughter. 

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COVID-19 Patients are Becoming Kidney Patients, but Most Americans are Unaware

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By Kevin Longino, CEO of National Kidney Foundation and kidney transplant patient

COVID-19 doesn’t just attack a patient’s lungs, it damages the kidneys. But a new Harris Poll released by the National Kidney Foundation shows surprisingly low levels of awareness on both the risk of developing an acute kidney injury as a result of COVID-19, as well as the long-term effects of kidney damage. And Americans want the federal government to do something about it.

COVID-19 and Kidney Failure

I’ve talked about acute kidney injury before in this blog trying to draw attention to what could be a looming healthcare crisis on the horizon. A new survey we conducted with The Harris Poll shows an alarmingly low understanding of how coronavirus can permanently damage your kidneys. A patient can go into the hospital as a COVID-19 patient and come out as a kidney patient, but just under 1 in 5 (17%) Americans are aware of acute kidney injury as a result of COVID-19. And less than half (46%) are aware that COVID-19 will likely result in a higher number of Americans with chronic kidney disease and/or kidney failure. Once kidneys fail, dialysis or a transplant is needed to survive.

The poll also showed that Americans want the federal government to do something about it. Two-thirds (65%), are concerned over potential shortages of dialysis equipment from COVID-19, and most Americans, (87%), support the federal government stepping in to address any shortages found in hot spots. Support is also high (87%) for the federal government devoting more resources towards the diagnosis, prevention, and treatment of kidney disease and significantly increasing funding for kidney research at the National Institutes of Health (NIH) as a result of kidney-related illness resulting from COVID-19.

As we repeatedly hear from experts, COVID-19 will be with us for a while. How we act today to treat the complications of the virus, which can stay with a person for life, will greatly affect the future health of current and future kidney patients for years to come.

Disparities in Minority Communities

The data emerging on the extreme toll coronavirus takes on minority communities is disturbing, and one of the communities most affected is the Hispanic community. NKF is hosting a live webinar today, May 14th, in Spanish at 3:00PM ET to discuss the precautions kidney patients should take to stay safe as America reopens. Transplant surgeon, Dr. Juan P. Rocca, and nephrologist, Dr. Jaime Uribarri will address the precautions and considerations for kidney patients, transplant recipients, and caregivers before they return to work and other regular daily activities. COVID-19 Y LA NUEVA NORMALIDAD, will be moderated by award-winning journalist Merijoel Duran.

Final Thoughts

Isolation has left me with a lot of time for Happy Hour Zoom calls with friends, many of them from college. It’s been fun to reconnect and without the isolation it never would have happened. But I am also getting in some reading. Lately, I’ve been reading Erik Larson’s “The Splendid and the Vile: A Saga of Churchill, Family, and Defiance During the Blitz”. It’s a study of leadership in crisis. Conventional wisdom says that Churchill was confident the entire time, yet the only thing he was confident about was that they could not lose because it was an unacceptable outcome. That’s how I feel about coronavirus and the threat it poses to our nation, and to kidney patients. We must persevere through this incredibly challenging time because we cannot afford to lose one more person to a virus that targets the vulnerable in unforeseen ways.

Please continue to check our COVID-19 resource page where we post all the latest information on issues facing our community in English and in Spanish. If you have questions or need support, please contact our toll free patient information help line by calling (855) NKF-CARES, (1-855-653-2273) or by email nkfcares@kidney.org. And join our free online discussion forums.

Be well and stay safe.

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COVID-19 Fears Don’t End After Being Tested

By Fiona McKinney, Kidney Patient and Kidney Advocacy Committee Member

A few weeks ago, I was interviewed for an article about “fears and concerns of contracting COVID-19 while receiving dialysis in an in-center clinic.” At the time, I said with great confidence that I had no fears because I trusted in the care of the clinic staff. My concerns centered more around the awareness that with kidney failure I have low immunity and needed to take extra safety measures while out in public, rather than the fact I was receiving dialysis at a clinic. The clinic staff practiced safety long before this crisis. They would ensure our safety now more than ever; I was certain of that.

coviddialysispatientstory

when a fellow patient showed early signs of the virus, the clinic took immediate, pro-active measures by sending him to the ER and closing off that section of the clinic. Since I had been located right next to him, I decided to self-isolate in case I contracted something and might pass it on. I worked from home for the next few days while we waited to hear back from the hospital—an agonizing three days.

Thankfully, the patient tested negative and the clinic wasted no time establishing a new protocol for similar situations. Dialysis patients are regarded as some of most high-risk for COVID-19. The clinic immediately started checking everyone at the front door before letting anyone in. A member of staff, in full protective gear, takes everyone’s temperature. If their temperature is normal, they are given a mask and allowed into the clinic. There are no exceptions.

That was March 18th, the week before the start of the big shut down in New York City when Governor Cuomo encouraged—then insisted—that all non-essential workers work from home and businesses close.

Those few weeks seem like a lifetime ago. On April 11th, I got tested for COVID-19 after developing a persistent cough. It came on suddenly during dialysis and turned into a coughing fit that wouldn’t go away. As part of the updated clinical procedure, and knowing I was high-risk, I was sent for testing the next day and told I couldn’t return to my regular clinic for at least two weeks. If I tested positive, I would be sent to one of two clinics, neither of which appealed to me. I wondered if I would survive and knew that if I tested negative, I would still be sent elsewhere because I am symptomatic. I was regarded as a “Person Under Investigation.”

That’s when my fear and concern began to seep in. I had never thought of being at an in-center clinic as a “comfort” until I was told I would have to leave. I was terrified of the alternative. I depended so much on the people I already knew and trusted to care for me. I felt so much more vulnerable going to a place I didn’t know.

This time, test results came back within 15 hours. I was negative for the virus but still symptomatic and was told it might be a false negative. I was sent to another clinic set up only for PUIs. We were stationed at least 20 feet apart and treated late at night after the regular schedule ended (sometimes finishing at 11 p.m.) Before the two weeks were up and I could return to my regular clinic, I got chest x-rays to make sure I didn’t have COVID-pneumonia. I didn’t and the coughing fits disappeared almost as suddenly and mysteriously as they first appeared. Sadly, when I got back to my regular clinic, several older people had died from the virus. Most had been from nursing homes.

Being on dialysis is a lifelong commitment to our health and ourselves. Its many challenges–the ups and downs of treatments, the side effects and pains, the debilitating exhaustion afterwards, to name a few—seem exacerbated now. Dialysis staff taking care of us remain on the frontline of our needs—not just during COVID-19—as are the dedicated drivers taking patients back and forth to their treatments, even now. Neither gets the credit they deserve and, like us, are extra vulnerable currently. These overlooked frontline workers should be included in our praise and gratitude. As we are constantly being reminded: We are in this together.

Stay safe and be well.

From your friends at the National Kidney Foundation:

As we move forward, we need to make sure that those who need to be tested get their results quickly, rather than waiting a day or more. Dialysis patients should not need to wait for their results and risk infecting others at their dialysis centers. As we begin to bring transplantation back for those seeking a kidney, we also need to ensure they get speedy results. After all, it does little good for them, or their living organ donors, to be tested days in advance if they risk getting sick in the meantime! Please sign our recently launched petition that calls on our public leaders to ensure they’re protecting kidney patients, in part by guaranteeing they have access to COVID-19 testing.

Fiona McKinney is originally from Dublin, Ireland. She was diagnosed with Glomerulonephritis when she was 16 years old and moved to New York City in the late 1980s to seek alternative healing methods, which supported her health for over 20 years. She then became a Polarity Therapy Practitioner and teacher in private practice. In April 2008, she developed ESRD and started dialysis. She is currently Director, Community Outreach and Manager of several marathon charity programs with Achilles International, an activities based non-profit for children and adults (including veterans) with various disabilities.

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Kidney Disease Hasn’t Hit Pause, Neither Have We

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By Kevin Longino, National Kidney Foundation CEO and kidney transplant patient

COVID-19 hits people differently and is especially hard on kidney patients. It is a dangerous illness that is putting patients’ lives at grave risk. The virus certainly hasn’t hit pause, but neither has kidney disease and nor have we.

At the State Level

As states continue to reopen, NKF’s local offices throughout the country quickly got to work hosting briefings for state legislators to ensure they fully understand the impact of COVID-19 on kidney patients. The briefings, led by local NKF medical leadership, cover what lawmakers and communities can do to help protect kidney patients during the pandemic, offers our assistance in helping kidney patients find the resources they need, and also set the stage for some of our other legislative priorities, like living donor protection laws.

NKF hasn’t hit pause on advocating for living donors and we continue to work with states to change laws to remove barriers to living donation. This week, NKF volunteers testified before the Missouri state legislature in support of a bill that would prevent discrimination against living donors seeking life, disability or long-term care insurance. We’re also working to ensure passage of HB46 in Kentucky, a bill that would grant paid leave to state employees who need time-off to recover from organ donation surgery. Thanks to NKF’s state advocacy efforts, 41 of the 50 states have laws on the books that offer some form of protection or relief to living donors. Removing barriers for donors is critical to increasing organ donation, which has been declining during COVID-19.

At the Federal Level

During a hearing this week, Congresswoman Jaime Herrera Beutler (R-WA) – a leading kidney champion in Congress – highlighted how COVID-19 is affecting all kidney patients, even those who don’t get infected.  View her poignant comments.

What Comes Next?

Our patients are worried, and so are we. Keeping people without underlying conditions safe is hard enough during a pandemic, keeping people with serious, chronic conditions safe when states are reopening is quite another. NKF has developed new resources for patients to answer patient questions covering everything from going out to eat, traveling and wearing a face mask to continuing with transplant and elective surgeries.

You can help us elevate the need to ensure kidney patients are protected at the state and national level by signing the petition NKF initiated last week. We’re advocating that life-critical “elective” surgeries (such as vascular access procedures) be given priority, patients be allowed to receive 90-day supplies of immunosuppressive drugs covered by Medicare Part B, testing for COVID-19 be increased and prioritized for kidney patients, patients with kidney failure retain their access to non-emergency medical transportation, and that living and deceased donor organ transplants be prioritized given the steep declines we’re seeing.

Telehealth Gets a Boost

Last month, NKF joined with several other stakeholders to advise the U.S. Department of Health and Human Services (HHS) on ways to address kidney patients’ needs during the COVID-19 Public Health Epidemic. Among other recommendations, NKF supported a proposal to improve Medicare coverage for telehealth visits without videos. This week, the Centers for Medicare and Medicaid Services (CMS) announced that doctors will now get paid the same whether the consultations are audio-visual or audio-only. This will help improve access for patients who have limited access to internet technologies, don’t have smart phones, or for older patients who just prefer to use a regular phone.

The New Normal

NKF is hosting a Facebook Live and Webinar: The New Normal: What kidney patients need to know as the country begins to reopen on Thursday, May 7th at 2:30PM ET/11:30AM PT. NKF’s Chief Medical Officer, Dr. Joseph Vassalotti and NKF’s President, Dr. Holly Kramer, will talk about precautions and considerations for kidney patients, transplant recipients, and caregivers before they return to work and other regular daily activities. Topics will cover questions like if kidney patients still need to quarantine themselves after the country reopens, when to restart regular lab visits, and what’s top of mind to most people, how quickly patients will be able to interact with their families again.

Final Thoughts

As we continue to hear about national chains and local shops filing for bankruptcy, unemployment rising and more dismal financial news, it can be tempting to just disregard the social distancing, handwashing and face masks in an attempt to get things back to normal. My concern is that if we reopen too soon, ​before states are really prepared to test ​all dialysis patients, transplant patients and their care teams, and trace and control this virus, it will only create more cases of coronavirus​ for high risk kidney patients, loss of life and ​higher costs to taxpayers. And that, to me, is not the definition of normal.

As always, please continue to check our COVID-19 resource page where we post all the latest information on issues facing our community. If you have questions or need support, please contact our toll free patient information help line by calling (855) NKF-CARES, (1-855-653-2273) or by email nkfcares@kidney.org. And join our free online discussion forums.

Be well and stay safe.

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