Patient Stories

Kidney disease is a life-changing diagnosis. Since I went into renal failure, I’ve believed that patients should only have to worry about the care they need to get well, not the high costs that come with it. Unfortunately, that isn’t the reality I’ve encountered, given my insurance and Medicare don’t cover the full costs of the life-saving treatments and [...]

For six and a half years, I lived through the daily struggles of dialysis and the challenges of getting quality care before I finally received a kidney transplant in 2009. The coverage I received while on dialysis simply wasn’t enough to pay for all of the medications I needed because I was under the age of 65 and did [...]

The last thing that folks living with End-Stage Renal Disease (ESRD) should have to worry about is whether they can afford to pay for their treatments. As someone who has been on dialysis since 2009, I’ve met a number of patients who live with a financial burden and uncertainty because they do not have access to Medigap insurance. Thankfully, [...]

My kidney disease diagnosis four years ago meant a lot of things, including the beginning of many doctor appointments, dialysis treatments, and medications. While these changes keep me alive and well, there are certain areas of care for dialysis patients that are lacking. For starters, I have found myself navigating between doctors to communicate my needs and make sure all of [...]

A kidney disease diagnosis is life-changing. It means undergoing hours-long dialysis treatments several times every week, spending more time at doctors' appointments, and completely overhauling how patients live their lives. The stress of that change is only complicated by the fact that for a lot of dialysis patients, the responsibility for tracking treatments, medications and communicating with their nephrologist [...]

Being a nurse practitioner gives me a glimpse into patients’ daily struggles that aren’t always obvious from the outside looking in, like the problems patients face when their coverage suddenly changes, and they can’t afford the medications they need. This is something I’ve particularly noticed for dialysis patients. Since a lot of them rely on Medicare for coverage, they [...]

Dialysis has involved a lot of waiting since I started it years ago. Treatments take hours at a time, and I’m left waiting for the call to finally tell me that a donor kidney is ready. It simply cannot come soon enough. However, I at least have coverage for my treatments through my wife’s job, in addition to Medicare, [...]

When I first went into the hospital because of a heat stroke a few years ago, I never would’ve imagined it would lead to me starting dialysis. After 19 days in the hospital, I was back just one day after being discharged. Before long, doctors were forced to put me into a medically induced coma while I experienced heart [...]

Before I was diagnosed with polycystic kidney disease while I was pregnant with my son, I knew nothing about kidney disease. I never would have imagined all the different things that go into treating it, and what it would eventually be like to go on dialysis. Once I did start dialysis in 2016, I found myself in a whole [...]

It took me two doctors' visits to get a liver transplant. It was a fairly seamless process all things considered, but the medications eventually cost me my only kidney and forced me onto dialysis. Getting a kidney transplant couldn't be more different, Just getting on the list feels like I'm running in circles, with constant tests and never any [...]

I’ve battled kidney disease for over half my life, experiencing one failed kidney transplant and 16 years on dialysis — all before my 30th birthday. Fortunately, I’m able to receive full coverage for the cost of the treatments and medications I need to fight my kidney disease. However, I know there are other patients out there who can’t say [...]

For four years, I have served my community as a social worker dedicated to helping dialysis patients. I have seen both the everyday problems kidney patients face and the larger issues with how our health care system handles them. There are a lot of obstacles that require more attention. Many patients on dialysis require trips to centers for treatments [...]

While I’ve never been diagnosed with it myself, kidney disease has touched just about every facet of my life. At home and at work, I’ve experienced firsthand just how much it can change a person’s life. From the treatments and waiting for a transplant, to the overwhelming financial challenges that can come with it, dialysis brings its own set of difficulties [...]

It’s been four and a half years since my first kidney transplant failed after 18 years. For me, that’s meant many of the all-too-familiar challenges of being on dialysis have become part of my day-to-day life once again, including the long and exhausting treatments and all of the other health struggles that come with them. Part of what makes [...]

I’ve seen firsthand why Medigap coverage expansion is needed for dialysis patients, which is the goal of HR 1676, a bill introduced in Congress earlier this year. Since my kidney transplant in 2018, I have gone to dialysis clinics all over to help prepare kidney disease patients for their own transplants. Everywhere I go, I hear from patients struggling [...]

Since I started dialysis in 2018, I’ve been lucky to have coverage that supplements Medicare and helps to keep my costs down. Even with that added coverage, though, I’ve noticed it is tough to afford all of the medicines I need. For patients without the additional coverage I have, that cost is even higher. When Medicare doesn’t pay for [...]

It’s been 34 years since my brother donated his kidney to me and changed my life for the better. Now, we do what we can to support dialysis patients in our area and help people better understand just what challenges patients face every single day. For a lot of them, it all comes back to coverage. As a transplant [...]

Dialysis brings a lot of challenges, but one of the biggest is simply getting the coverage you need. The treatments make it very challenging for patients like me to work a traditional job, which means many of us do not have employer-sponsored insurance and rely on Medicare. If it doesn’t cover a specific medication or treatment, we have no [...]

Starting dialysis seven years ago was a bit of a rude awakening. I had to accept that my day-to-day life had changed, and that I’d now need to devote significant time each week just to go through treatments. One of the most challenging parts of the process, though, was learning the ins and outs of the healthcare system. It [...]

I was only 19 years old when I was diagnosed with kidney disease. Because I was under 65, Medicare didn’t cover the full costs of treatments and medications throughout my 10 tough years on dialysis, and I was forced to make difficult choices between the care I needed and basic needs like groceries. A new bill, however, the Jack [...]

In 2004 my dad had his first dialysis treatment after flatlining from a heart procedure. We were not sure he would make it through the night as his organs were shutting down, but we were told that dialysis would help and at the time, we wanted to just do whatever was needed to save him. When my dad left [...]

To the editor: As someone who has been on dialysis for 23 years, educating other patients and advocating for them gives my job meaning. I get to assist people who have gone through the same challenges I have and help people better understand exactly what life on dialysis is like. Through my work, I’ve seen how many patients struggle [...]

Something felt a little off after my daughter was born. I started feeling more exhausted each day after work, and at one point one of my elementary school students even pointed out that I didn’t look well. I had always been perfectly healthy, so I never expected that I’d be diagnosed with kidney disease. But, after a referral to [...]

Starting dialysis in 2016 showed me there are a lot of challenges patients with end-stage renal disease (ESRD) face. There are major lifestyle differences, and treatments take several hours multiple days each week. While I can do these treatments from home at night, lots of other patients need to make trips to their local clinics, which takes an exhausting [...]

While my husband was on dialysis, and even since his kidney transplant, getting affordable coverage has felt impossible. If Medicare doesn’t cover something, we have to scramble to afford it, which was a massive challenge given his dialysis treatments got up to $15,000 and medications can cost $3,000 each month. This shouldn’t happen. We need lawmakers to pass bills [...]

For a lot of patients, starting dialysis means not being able to work anymore. Thankfully, with my job I can work from home when I’m doing my treatments, which has been hugely beneficial in helping me stay employed and get the coverage I need. The situation is very different for a lot of other patients, though, who can’t continue [...]

To the Editor: There is a bill which would expand Medigap Coverage to Illinois patients who need it. My story with kidney disease goes back more than 10 years to when my mom stepped in and donated one of her kidneys to me. While that was an invaluable gift on her part, that transplant failed a few years ago, [...]

I was diagnosed with End Stage Renal Disease (ESRD) in 2016 when my kidneys began to fail. While I was undergoing dialysis, I received full coverage for my treatments and medications through disability insurance, but many other patients aren’t fortunate to have coverage and are left to pay massive medical bills. Thankfully, help is on the way. The Jack [...]

One certainty in life is that all of us will be tested by circumstances out of our control. For me, it was kidney failure, and since 2007 I've been on dialysis. I'm very blessed that I was able to receive this care, and that I've been able to live a healthy and happy life thanks to the support of [...]

After three difficult years on dialysis, I received a kidney transplant last fall through the Department of Veteran Affairs as a Marine Corps veteran. While I don't have dialysis treatments anymore, I keep touch with everyone I met at my dialysis center and find new ways to help patients. In these conversations, one topic seems to come up more [...]

To the Editor: As a single mom, starting dialysis required a lot of shuffling so I could attend treatments while juggling my responsibilities as a parent. Thankfully, it didn’t require big out-of-pocket payments to cover what Medicare couldn’t, since Michigan requires insurers to provide dialysis patients like me with access to Medigap. I know the reality is different for [...]

I have struggled with kidney disease my entire life. I was diagnosed with End Stage Renal Disease when I was 7 years old, and I finally went on dialysis in 2010 at age 26 when my kidneys failed. While I was able to receive full coverage from private and public insurance providers due to the fact that I am [...]

Last year was tough for everyone as we navigated life during a pandemic and did what we could to stay home. Unfortunately, things got even tougher when I found out I had to start dialysis treatments again. While I was initially able to stop dialysis in 2010 thanks to a kidney transplant, complications meant that I had to start [...]

For 10 years, I acted as my father’s in-home dialysis provider, and having the chance to be there for him was one of the most rewarding experiences of my life. While he passed away last year, I’ve been able to channel that energy into helping and educating other patients who are in the same position he was. Caring for [...]

When the COVID-19 pandemic first hit last year, it forced a lot of people out of work. That was especially the case for dialysis patients like me, as our kidney disease means we’re at a higher risk for getting seriously sick if we get COVID-19, and we’ve had to take extra steps to stay safe. While I’m looking forward [...]

Kidney disease has been a major part of my life from the very start. I was born with just one functioning kidney and, defying doctors’ expectations, made it to age 25 before I needed to start dialysis treatments. Through my own experiences with dialysis and my conversations with other patients in dialysis clinics across the United States in the [...]

Living with kidney disease, undergoing dialysis, and ultimately traveling out-of-state to receive a kidney transplant provided me with a harsh lesson in how challenging life with End-Stage Renal Disease (ESRD) can be both physically and financially. It’s already difficult having to go through all these treatments even before considering the financial burdens that come with them. The costs are [...]

Life on dialysis is hard. It involves several hours-long treatments every week and puts a major strain on everyone involved. It’s a frustrating process that I wouldn’t have been able to get through without my family. The last thing you want to worry about while going through dialysis is the cost. The treatments already weigh on patients and families [...]

I never considered the possibility of having kidney disease until I ended up in the emergency room with a life-threatening illness. The doctors told me I was “toxic” and said I had developed kidney disease due to hypertension. Not long after, I started dialysis treatments. Being on dialysis meant I couldn’t work full time, so I wanted to find [...]

As the COVD-19 pandemic continues to cause problems for Americans across the country, many people have been concerned about their ability to access the care that they need. Naturally, many patients are worried about where they can turn if they fall ill, and what it could potentially cost them. Being able to see all the necessary care providers is [...]

From the moment I was diagnosed with kidney disease, I was fortunate to receive outstanding care and support from my providers. I know that it played a key role in my ability to get a transplant, as I live in an area with one of the longest wait times in the country. In fact, I was encouraged to get [...]

Despite months of research and progress, it still seems like we learn something new about COVID-19 every day, ranging from how it affects patients with certain pre-existing conditions to new information on the long-term health risks the virus poses to those who contract it. Now, as more information continues to come to light, it is imperative that we use [...]

Preserving patient choice is central to a successful treatment plan.

My daughter’s kidneys failed when she was just 23 years old, marking the beginning of a long and difficult path on dialysis. Her treatments were incredibly straining and gradually weakened her until, about ten years ago, she had to undergo open-heart surgery because of the stress her dialysis treatments put on her circulatory system. Throughout the entire process, though, [...]

For many patients, adjusting to life with kidney disease means change. From new diet restrictions to multiple weekly dialysis treatments, being diagnosed with kidney disease can create a sudden and difficult shift in a person’s daily lifestyle. Unfortunately, for many patients on dialysis these changes are made all the more challenging by a lack of a truly cohesive, coordinated [...]

As we move toward the fall season, the COVID-19 pandemic still poses a major threat to people living here in Iowa, as well as others across the U.S. With public health still top-of-mind, it is important that we do everything we can to protect high-risk patients, especially those living with end-stage renal disease (ESRD). ESRD is a serious condition [...]

I am a lifelong Oregonian and suffer from stage 5 chronic kidney disease, meaning I depend on dialysis to live. Through my treatments, I've seen first-hand the importance of coordinated care for myself and others with end-stage renal disease (ESRD). Care coordination is a system where each of a patient's health care providers proactively share information with each other, [...]

Since 2009, I have served as my father’s in-home caregiver as he undergoes dialysis treatments. In that time, we’ve had the incredible fortune of working with supportive and attentive medical staff who helped us as we learned about life with dialysis. Because of this great medical care, my father was, until a recent amputation, able to maintain an active [...]

Throughout the COVID-19 pandemic, there has been much attention devoted to improving care for high-risk patients in Oregon and throughout the nation who have chronic health problems which hinder their ability to fight off the virus. During all of this, however, relatively little attention has been given to the difficulties faced by those with end-stage renal disease, who depend [...]

High-risk patients have been one of the focal points of the public response to COVID-19. Now, as our leaders continue responding to this epidemic, they must pay particular attention to the impact their decisions will have on patients with end-stage renal disease, or ESRD, who rely on dialysis treatments to live.  Living with ESRD poses many unique challenges, as [...]

You might be hearing a lot about what’s not happening in the nation’s Capitol right now but one thing that is happening is the BETTER Kidney Care Act—to expand care coordination opportunities for dialysis patients. The COVID-19 pandemic has placed the health of kidney disease patients at risk more than ever before, while also showing the many challenges to ensuring their continuity of their care. Here’s [...]

This has been a difficult year for the medical community as we do everything we can to combat the spread of COVID-19 while protecting the most vulnerable patients. One especially vulnerable group right now is patients with end-stage renal disease (ESRD), in large part because they see so many different doctors. They need to regularly see a primary care [...]

Protecting patients in the U.S. has been at the top of the public mind since the start of the COVID-19 outbreak. Since March, people both here in Missouri and across the rest of the country have been taking steps to help curb the spread of the virus and keep each other safe, particularly those with other health issues that [...]

Since she was just three days old, my daughter has struggled with kidney failure. After over 30 years and three transplants, it’s become clear that more needs to be done to help kidney patients. Care coordination in particular needs a lot of attention. Without effective communication between doctors, things get harder for patients, and they can suffer serious health [...]

When my kidney issues started in 2009, I was fortunate enough to receive a donor kidney from my mother, which lasted until 2017. Unfortunately, new medications caused that kidney to fail and ultimately forced me to go on dialysis. Since starting dialysis I’ve worked with a great team at my local clinic that truly cares about me and even [...]

While working in Abu Dhabi, I found out I had kidney disease and needed to begin dialysis. I was able to continue working abroad for a few more years, but a 2017 trip to the hospital showed me it was time to move back home. Since then, I’ve noticed that a better, more coordinated system is needed to help [...]

Sadly, Paul Van Vooren passed away after this article was published. As a patient with Von Hippel-Lindau (VHL) who has undergone 65 surgeries, including a kidney transplant, and received dialysis treatments for over eight years, I know the importance of coordinate care for dialysis patients. My treatment for VHL sometimes requires me to travel hours to the Mayo Clinic [...]

Dialysis has forced me to make major adjustments, requiring me to make three weekly trips to the clinic for four-hour treatments while I continue my years-long wait for a kidney transplant.  I work hard to maintain my diet, get proper exercise, and stay on top of all of my treatments, but many dialysis patients can’t because they have diabetes [...]

Dear Editor: For over three years, dialysis has been a central part of my life. Three times every week I go to the dialysis center, where I check in on my friends who also get treated there and catch up on my favorite cooking shows during my treatment. The doctors and nurses at my facility are incredible. They’re like [...]

When my doctor told me I had kidney disease, I wasn’t aware of just how serious it was. Two years later, though, I passed out and woke up in the emergency room, where doctors said I was experiencing both kidney failure and heart failure. Shortly after, I started dialysis. Fortunately, I was able to do in-home dialysis and remain [...]

After being diagnosed with end-stage renal disease in 2014, I’ve experienced dialysis treatments at home, in a clinic, and have even traveled with my dialysis equipment. While dialysis created a lot of anxiety for me at first, I have had the benefit of working with an excellent treatment team that is sensitive to my needs as a patient and [...]

For over three years, dialysis has been a central part of my life. Three times every week I go to the dialysis center, where I check in on my friends who also get treated there and catch up on my favorite cooking shows during my treatment. The doctors and nurses at my facility are incredible. They’re like a second [...]

One of the most difficult moments of my life was finding out that, despite being only 24 years old, my kidney was beginning to fail. After years of dialysis and a kidney transplant, I learned through my experiences in the health care system what needs to be improved. Doctors and nurses need a better care coordination framework to more effectively [...]

When I first learned I had kidney disease, I was fortunate to not have to start dialysis right away. For about six or seven years, my doctor worked hard to keep me healthy, doing everything he felt was safe before finally recommending that I begin dialysis treatments. When I finally began dialysis treatments at my local clinic, I found a [...]

Too often, we forget about the personal and mental health struggles facing patients with serious medical illnesses. This is especially true for dialysis patients, who often have to upend their lives to receive the treatments they need. I’ve experienced this personally when after three years of balancing dialysis treatments and doctor’s appointments, I was forced to close a successful [...]

While most people with COVID-19 experience mild symptoms, dialysis patients like me who have a weakened immune system are more vulnerable to serious complications from the highly contagious virus. Now more than ever, immunocompromised patients with kidney disease must have coordinated medical care to ensure they are receiving the best health care possible from all of our medical providers. [...]

My experience with dialysis extends four years: from when my first kidney transplant failed in 2014 to when I received my second transplant in 2018. During that time, the most frustrating thing I encountered was a lack of care coordination. I bounced between several doctors who treated my various health issues independently. Every doctor’s visit required me to provide [...]

Efforts to modernize the delivery of quality care to dialysis patients reach several milestones in 2020: Medicare’s first care coordination program for kidney care, the Comprehensive ESRD Care Model, expires at the end of this year; providers have been invited to participate in a new program, the Comprehensive Kidney Care Contracting Model; end-stage renal disease (ESRD) patients will, in [...]

As a dialysis patient, it has become clear to me that one of the biggest flaws in the American health care system is the disjointed way care is often provided to patients. If patients have chronic conditions alongside other health complications, it can be exceedingly difficult to navigate the different doctors and hospitals we need in order to receive [...]