Lyfebulb, in partnership with Columbia University, presents a virtual education series, sponsored by Veloxis Pharmaceuticals, to address key topics of living from late-stage disease through the transplantation process and beyond. Providing informative patient education is key to improving the patient experience, health communications, and health outcomes.

This session discusses the issues surrounding living kidney donor donations. 

When to Think About a Donor

A patient should begin exploring getting a living donor immediately after they are informed that they will require dialysis. Getting a kidney transplant minimizes the time spent on dialysis. It is important for potential recipients to let people in their community – including church groups, social media, and other community networks – know about their condition and situation in seeking a donor. Sharing one’s story can help others to understand how getting a transplant can improve upon someone’s life. In this search for help, do not be ashamed of your disease; share your blood type to get donors who would have the best possibility for a match. There are many altruistic individuals, and organizations that specialize in finding donors, eg DOVE etc.  

How to Find a Good Match

A living donor and a recipient do not have to be a match but there are some factors to consider in this kind of donation. A living donor can be very successful even if it isn’t a perfect match. If there is a willing living donor, a patient is more likely to get a transplant quickly. From a deceased donor, the median life of the transplant is 9 – 10 years – 50% are successful up to that length of time. For living donors, the life expectancy of the graft is 18 – 20 years, and a living sibling matched donor graft duration is about 30 years. 

If an individual has options between a few living donors, a younger living donor selection is best, however, the risk for this person, who has a much longer life left to live with only one kidney is higher because the uncertainty of events and health challenges may not present until later in life. 

When it comes to matching donors and recipients, size matching isn’t often an issue. It can cause a larger bodied recipient to have higher creatinine levels as the kidney may not be providing as much, but it isn’t an exclusion to transplantation. Everyone is born with a set number of nephrons, but the ones that are there just work a little harder if the body is larger. If there are mismatches in donor and recipient due to blood type or antibodies, donors can be swapped which means one donor can donate to a recipient that is more matched to that recipient, and another donor would give to a different recipient.

How is the Health of the Donor Impacted?

As a donor it is safe to get pregnant after becoming a donor, but there are some nominal higher risks such as preeclampsia or high blood pressure during pregnancy. 

Recovery time for the donor can vary, but typically patients spend a few days in the hospital, then about a week out they come back for evaluation at which point body functions are getting back to normal and they are typically back to work within 3-4 weeks. 

The long-term risks for the procedure for the donor can be categorized by surgical risk, medical risk, psychosocial risk, and financial risk. Surgery is never risk free but laparoscopic kidney donation is mild. There is some risk of developing high blood pressure and end stage renal disease, but this is rare. Donors with a history of depression can have redevelopment if they are at risk. 

There are many factors to consider when becoming a kidney donor and when searching for a donor as a recipient. 

Listen to the webinar and learn more about these conversations and educational resources for potential kidney transplant recipients. This, and future webinars can be found on transplantLyfe.com/webinars. 

Panelists

  • Dr. Rodrigo Sandoval, Director of Surgery and Pediatric Transplant Surgery at Columbia
  • Dr. Heather Morris, Assistant Professor of Medicine and Transplant Nephrologist
  • Mr. Brian Runge, Chief Coordinator of Donors at Columbia University Transplant Program

Moderators

This is a virtual education series in partnership with Columbia New York Presbyterian, sponsored by Veloxis Pharmaceuticals, that will address key topics of living through late-stage disease through the transplantation process and beyond.

This session discusses the preparation after dialysis and starting the transplant process to get listed, as well as recruiting a potential living donor.  

Choosing a Transplant Center

To begin conversations with a transplant center as a potential kidney transplant recipient, a patient usually gets referred from a dialysis program or nephrologist. A patient can also do research on their own regarding transplant centers, they contact them directly. A few things to keep in mind when choosing a transplant center are the proximity of the center to the recipient’s residence and the ease of traveling for follow-up care consistently. Logistics play a role in the optimal choice. Choosing a transplant center that the patient has good communication and rapport with is very important. A patient will spend a lot of time with their transplant center through the process of transplant. It is important to evaluate how responsive and helpful a particular transplant center is. Don’t forget, a potential recipient can change transplant centers at any time if they chose to do so. There is also a public database called SRTR where anyone can log on and see the clinical outcomes of various transplant centers. This also could be an important factor when choosing a center to go to. 

Evaluating Good Candidacy for Receiving a Transplant

When it comes to evaluating whether someone is a good candidate to receive a transplant, a potential recipient undergoes a day-long evaluation that consists of various tests and meetings with the transplant coordinator, the surgeon, the physician, the social worker, and others that may be involved in your treatment. There will be a lot of information to absorb so it is important for candidates to bring a support person with them to help remember details and provide care if needed to the potential recipient. 

During evaluation day as well as subsequently, there will be an abundance of educational materials and discussions with the coordinator, physician, and social worker about what to expect after the transplant. After evaluation, the team meets to discuss candidacy for the patient and if they are ready for the patient to be listed, then there are additional education classes. For any patient, the first source of information is the transplant coordinator. 

What Happens Once I am Eligible for a Transplant?

After someone is deemed eligible for a transplant, they are placed on the waitlist. The list is the United network of organ sharing (UNOS) waiting list. 

If someone has an unusual or difficult problem, not all transplant centers will be equipped to provide care, but even if someone is turned down by one transplant center, they can be accepted for a different one. You are also able to be on more than one transplant center’s list at one time.

How Would Someone Get Taken off the Transplant Waitlist?

Someone can get taken off the list if their condition worsens and the risk of doing the transplant outweigh the benefits. Additionally, if a patient is abusive to the staff or if they are noncompliant in their care and refuse to take care of themselves this could also lead to removal. Other underlying conditions could be a reason someone gets taken off the list for example due to a cancer diagnosis. This person would have to wait a certain time before getting back on, but it depends on the type of cancer, size, and malignancy. 

Kind of Donor

Individuals can be on the transplant list waiting for a deceased donor and still also be looking for a living donor. Live donor kidneys work better over the long term, they last about twice as long – 15 to 20 years. This option should be considered as the optimal treatment. If a patient hasn’t had time to find a living donor, they can get listed on the deceased donor list and begin searching for a living donor. Donor age limit does matter when it comes to how much longevity the donated kidney has. if its from an old donor the lifetime of that donated kidney won’t be as long. The oldest donor recorded was 83 years old. With that, donor safety is paramount and extensive evaluation will be undergone to ensure the surgery is safe and the donor will be ok with one kidney and both are normally functioning. 

Listen to the webinar and learn more about these conversations and other kinds of support and educational resources for potential kidney transplant recipients. This, and future webinars can be found on transplantLyfe.com. 

Panelists:

  • Lloyd Ratner,  MD, MPH, FACS, FICS (Hon), professor of surgery and Director of Transplantation at Columbia University
  • Mr. Brian Runge, RN, BSN, CCTC, chief coordinator for donors at Columbia University
  • Geoffery Dube, MD, assistant professor of medicine and senior nephrologist on transplant service at Columbia University
  • Gretchen Boyd, RN, MSN, CCTC, chief coordinator of renal and pancreas transplant program at Columbia University

Moderators:

  • Mark Hardy, MD, PhD (Hon), FACS professor of surgery at Columbia University
  • Dr. Karin Hehenberger, CEO of Lyfebulb and visiting associate researcher at Columbia University

This is a virtual education series in partnership with Columbia New York Presbyterian, sponsored by Veloxis Pharmaceuticals, that will address key topics of living through late-stage disease through the transplantation process and beyond.

This session covered topics such as living with end-stage renal disease (ESRD), how to prepare for dialysis and transplant, and how dialysis and transplant affect the quality of a kidney disease patient’s life. 

ESRD and Chronic Kidney Disease

As much as 15% of adults have chronic kidney disease, which is roughly one in every seven people. Just last year, 150,000 patients started treatment for kidney disease. 

It is important for patients with kidney disease to begin discussing and learning about the possibility of dialysis and transplant as early as possible. The progression of the disease is variable between patients, but when someone begins to show symptoms of high potassium levels and fluid retention, it is time to consider starting dialysis. At this time, the kidney is functioning at about 20% or less capacity. 

Dialysis for Kidney Disease

Dialysis helps those with kidney disease by cleaning or filtering the blood artificially when the kidneys are not able to perform the function properly. There are different types of dialysis – hemodialysis and peritoneal dialysis. Hemodialysis is done at a center, where blood is removed from the body and clean blood is returned through the veins. This is the default method of dialysis, even though most people would prefer the convenience of home care when receiving dialysis. 

Peritoneal Dialysis

Peritoneal dialysis allows for that convenience. During peritoneal dialysis, fluid is filtered into the body through the stomach which circulates and cleans the body of toxins, Then, the fluid is extracted along with the toxins. This method allows for flexibility with travel and daily functions and can be done at home during the night. However, this dialysis does require some training and assistance from a caregiver so the patient must have a certain level of responsibility and independence. Furthermore, it is completed seven days a week. This type of dialysis is only done for about 10% of patients in the United States, while in other countries, it is the primary modality. There is no evidence to support one type over the other, but peritoneal dialysis is gentler on the body and does not cause low blood pressure or fatigue. 

Normal life can be sustained while on dialysis. That being said, children and busy adults may not be the best candidates, because hemodialysis can interfere with school and work.

Dialysis and Transplantation

When it comes to transplantation, about one-third of patients are listed for a transplant before dialysis. It is important for medical professionals to begin asking patients early if they have potential donors and for patients to begin considering all avenues. 

Educating patients about both transplantation and dialysis at the same time helps minimize the sense of feeling overwhelmed and/or potential denial when the patient is facing difficult decisions in their care, but transplantation is the ultimate goal for those with end stage renal disease. 

In the long run, transplantation is the best option for quality and extension of life for any patient that is eligible. The long-term effects of dialysis aren’t great – especially for those in kidney failure due to diabetes. These patients have a particularly negative experience and benefit greatly from transplantation. For patients who are hesitant, education is extremely important.

Advancing the Treatment for Kidney Disease

The good news is that the future of kidney disease is bright as there are a number of new drugs available to slow kidney disease. This is an exciting time for research into wearables, as well as stem cell therapies. Thankfully, there is a lot of hope for the nephrology community. 

View past webinars in this series and register for future webinars at transplantlyfe.com/webinars. 

Panelists:

Syed Ali Husain, MD – Assistant Professor of Medicine at Columbia Vagelos College of P&S 
Maya K. Rao, MD – Associate Professor of Medicine at Columbia Vagelos College of P&S, Director of Chronic Kidney Disease Program 
Gerald Appel, MD – Professor (Tenured) of Medicine at Columbia Vagelos College of P&S, Director of Glomerular Disease Center

Moderators:

Mark A. Hardy, MD, PhD (Hon), FACS – Auchincloss Professor of Surgery, Director Emeritus and Founder of the Transplantation Program at Columbia University Medical Center
Karin Hehenberger, MD, PhD – Founder and CEO of Lyfebulb and visiting associate researcher at Columbia University

This is a virtual education series in partnership with Columbia New York Presbyterian, sponsored by Veloxis Pharmaceuticals, that will address key topics of living through late-stage disease through the transplantation process and beyond.

Living with Chronic Kidney Disease: What are My Options?

This session discusses end-stage renal disease management before dialysis and transplant. Other topics include what it’s like living with kidney disease, what can be done to prevent further progression, and treating the patient in the disease journey.  

Kidney Function

The kidneys have several roles – one is regulating fluid balance. The human body takes in extra salt and water. Whatever is not utilized is excreted in the form of urine. The kidneys also regulate mineral content in the blood such as potassium, phosphorus, and calcium. They also clear waste products of metabolisms like proteins and nitrogen. Lastly, it regulates blood counts preventing someone from becoming anemic. If any of these functions can’t be regulated, a person has some degree of kidney disease.

Causes of Kidney Disease

In adults, the cause of kidney disease is primarily diabetes, high blood pressure (hypertension), or other autoimmune diseases that cause nephritis (inflammation of the kidney). Function can be preserved by maintaining blood pressure, blood glucose levels, and monitoring other body functions. In children, the primary cause of kidney disease is congenital issues. These are primarily determined before birth or in infancy due to infections, proteins, or blood found in the urine. A kidney biopsy is the best way to determine the presence and source of kidney disease. Sometimes an ultrasound or a CAT scan can determine it as well. 

When is it time for a kidney transplant?

If the patient is showing symptoms of severe kidney disease such as nausea and severe fatigue, and medications and diet have been modified with no improvement, then proceeding with dialysis until a kidney transplant can occur is the appropriate course of action. 

Evaluation for transplant begins when kidney function (GFR) is around 15 or 20% of normal kidney function. Most people receive a transplant with around 10 to 15% of GFR. 

A kidney transplant can either come from a deceased or living donor. In 2019, 41,000 people in the United States were newly placed on the waiting list for kidney transplants. That year, there were only about 23,000 kidney transplants done. This means 20,000 individuals do not get transplants per year. The wait time for a deceased donor can be years, and there is a great need for living donors.

Advancements in Transplantation Research

In the last few years, research into genetically engineered organs from animals is advancing. In the first of its kind, a pig kidney was recently successfully transplanted into a human. This was a temporary experiment, however, and there is still much to learn and advance in this field. Regardless of the technology, clinicians and researchers are focused on moving toward research advancements where transplants can be more accessible to patients and the success of transplanted kidneys and other organs is significantly improved.

Listen to the webinar and learn more about innovations and research involving dialysis and kidney transplants. This and future webinars can be found on transplantLyfe.com. 

Panelist and Moderators

Panelists:

David J. Cohen, MD, MA – medical director of transplantation at Columbia
Hilda Fernandez, MD – associate professor at Columbia and a pediatric and adult nephrologist
Lloyd E. Ratner, MD, MPH, FACS, FICS (Hon) – professor and chief of the renal pancreas transplantation service at Columbia

Moderators:

Mark A. Hardy, MD, PhD (Hon), FACS – professor of surgery at Columbia University
Carly Rebecca McNulty, RN, BSN, CCTC – senior coordinator at the Columbia transplant program
Karin Hehenberger, MD, PhD – CEO of Lyfebulb and visiting associate researcher at Columbia