By Teri Browne, PhD, MSW, LSW
Introduction
Chronic kidney disease may be caused by diabetes, high blood pressure and other health problems. Early detection and treatment can often keep chronic kidney disease from getting worse. When kidney disease progresses, it may eventually lead to kidney failure, which requires dialysis or a kidney transplant.
What Is Chronic Kidney Disease (CKD)?
Chronic kidney disease includes conditions that damage your kidneys and decrease their ability to keep you healthy. If kidney disease gets worse, wastes can build to high levels in your blood and make you feel sick. You may develop complications like high blood pressure, anemia (low blood count), weak bones, poor nutritional health and nerve damage. Also, kidney disease increases your risk of having heart and blood vessel disease. These problems may happen slowly over a long period of time. Chronic kidney disease may be caused by diabetes, high blood pressure and other disorders. Early detection and treatment can often keep chronic kidney disease from getting worse. When kidney disease progresses, it may eventually lead to kidney failure, which requires dialysis or a kidney transplant to keep the condition from becoming fatal.
The Facts About Chronic Kidney Disease (CKD)
- 20 million Americans – 1 in 9 US adults – have CKD and another 20 million more are at increased risk.
- Early detection can help prevent the progression of kidney disease to kidney failure.
- Glomerular filtration rate (GFR) is the best estimate of kidney function.
- Hypertension (high blood pressure) causes CKD and CKD causes hypertension.
- Persistent proteinuria means CKD.
- High risk groups include those with diabetes, hypertension and family history of kidney disease.
- African Americans, Hispanics, Pacific Islanders, Native Americans, older adults and people with a family history of kidney disease are at increased risk for CKD.
- Three simple tests can detect CKD: blood pressure, urine albumin and serum creatinine.
- Your doctor will help you decide when you need to start treatment. This decision is based on your medical condition, how much kidney function you have left, and your nutritional health.
Treatment Options
The treatment options for chronic kidney disease (CKD) are dialysis, kidney transplantation, and no treatment. Two different kinds of dialysis can be done—hemodialysis and peritoneal dialysis. Each type of treatment has pros and cons. You will need to speak to your doctor and your family about which treatment is best for you. The decision will be based on a number of factors including your medical condition, your lifestyle and your preferences. Most patients try different types of CKD treatment options.
Hemodialysis
Hemodialysis is a treatment that cleanses your blood of the wastes and excess fluid that have built up. During hemodialysis, your blood travels through soft tubes to a dialysis machine where it goes through a special filter called a dialyzer, or an artificial kidney. As your blood is cleansed, it is returned to your bloodstream. Only a small amount of blood is out of your body at any time. In order to be connected to the dialysis machine, you need to have a catheter, fistula or graft, which is an access to your bloodstream. Hemodialysis treatments can be done at a dialysis center or at home. Treatments are done at least three times a week (some patients dialyze everyday and report feeling better from more frequent dialysis), and each one lasts about three to five hours. Dialysis clinics have a team of dialysis professionals to help patients get the most from their treatments and deal with any issues that may arise. This team includes nephrologists (kidney doctors), dialysis nurses and technicians, dieticians and social workers. With home hemodialysis, you and an assistant are trained to do all the steps of the procedure and you can dialyze to fit your own schedule. On home hemodialysis, you only have to visit the clinic once a month for routine care like blood tests to make sure dialysis treatments are going well at home.
Peritoneal Dialysis
In peritoneal dialysis, your blood does not travel to a machine, but is cleaned inside your body. The lining of your abdomen (the peritoneum) acts as a natural filter. You pass a cleansing solution, called dialysate, into your abdomen (your belly) through a soft tube called a catheter. The catheter is placed during minor surgery. Wastes and excess fluid pass from your blood into the cleansing solution. After several hours, you drain the used solution from your abdomen and refill with fresh cleansing solution to begin the process again. Removing the used solution and adding fresh solution takes about a half hour and is called an “exchange.” Peritoneal dialysis can be done at home, at work, at school or even during travel. Many people who choose peritoneal dialysis feel it allows them greater flexibility.
Kidney Transplant
A kidney transplant is an operation that places a healthy kidney from another person into your body. The kidney may come from someone who has died or from a living donor who may be a relative, a partner, a friend, or someone who wished to donate a kidney to anyone in need of a transplant. The failed kidneys may be left in place in your body. Your new kidney will be placed in your lower abdomen and connected to your bladder and blood vessels. The transplant operation takes about three hours and you usually will be in the hospital for about five to seven days. After the transplant, you will need to take special medications to prevent your body from rejecting the new kidney. You will have to take these medications as long as you have the transplant. Many patients want to have a transplant because it gives them more freedom, allows for a less restricted diet and eliminates the need for dialysis.
What if I Do Not Want to Start Treatment for My CKD?
For many people with kidney failure, dialysis greatly improves quality of life. For some patients, however, dialysis may not improve quality of life significantly, often because of the severity of their health problems. You have the right to decide not to start treatment if you feel that the burdens of dialysis or a transplant would outweigh the benefits. Before considering this option, you should discuss it carefully with your doctor and your loved ones. However, the final choice about starting or not starting treatment is up to you. A nephrology social worker at a dialysis or transplant center can help you with this difficult choice. It is important to know that even if you decide to start dialysis, you always have the option to discontinue. For people who decide to quit dialysis, support services are available.
How Social Workers Help
When you or a member of your family is diagnosed with kidney disease, you may have many questions such as:
- What treatment choice is best for me?
- How will my life change because of my illness?
- How will my illness affect my family?
- How will I pay for my treatments?
- Will I be able to return to work and my daily activities?
- Is it normal to feel sad and depressed?
Kidney disease can change your life. Your health care team works together to help you return to many of your normal activities. You may also want to become involved in new activities. Every dialysis and transplant center has a nephrology social worker who is there to help you and your family adjust to your illness. You are an important part of the health care team. Your social worker can help you understand your feelings and adjust to your new lifestyle with dialysis or a
transplant. Your social worker can help you with:
- deciding which CKD treatment is best for you
- concerns about your job
- your feelings
- concerns about death and dying
- your marriage and family life
- problems with sex and intimacy
- body image issues
- information about health care decisions
- changes in your role in your family
- providing a support group
- speaking on your behalf to the health care team
- dealing with the many changes in your life
- feeling sad and depressed
- coping with kidney disease and its treatments
- guiding you to community resources that may help you and your family, such as: income to meet day-to-day expenses, finding employment or volunteer work, programs that pay for the cost of treatment or medications, home health care services, medical equipment, ideas/resources for exercise.
Working with your nephrology social worker can help you live life to the fullest. Every dialysis and transplant center in the United States has a master’s level social worker who can help you with your CKD.
Resources
The National Kidney Foundation
The National Kidney Foundation is a major voluntary health organization which seeks to prevent kidney and urinary tract diseases, improve the health and well-being of individuals and families affected by these diseases, and increase the availability of all organs for transplantation.
www.kidney.org
Kidney School
Kidney School will help you learn to take an active role in your healthcare decision-making. Kidney School is an interactive, web-based learning program in 20-minute modules. It was designed to help people learn what they need to know to understand kidney disease and its treatment, adjust to kidney disease, make good medical choices, and live as fully as possible. You decide which modules to visit and when––so what you learn is entirely up to you.
www.kidneyschool.org
Home Dialysis Central
This Web site provides extensive information and resources about home dialysis.
www.homedialysis.org
Centers for Medicare & Medicaid Services
The Medicare End Stage Renal Disease Program is a national health insurance program for people with ESRD. The program is designed to encourage self-care dialysis and kidney transplantation and clarify reimbursement procedures.
www.cms.gov/providers/esrd.asp
American Kidney Fund
The American Kidney Fund is the nation’s #1 source of direct financial assistance to kidney patients, and is a leader in providing education to those with and at risk for kidney disease. Their programs address all stages of kidney health, including kidney disease awareness and prevention; community outreach to individuals at high risk for kidney disease; and treatment-related support for those requiring renal dialysis or transplantation.
www.akfinc.org
National Kidney Disease Education Program
NKDEP is an initiative of the National Institutes of Health, designed to reduce the morbidity and mortality caused by kidney disease and its complications. NKDEP aims to raise awareness of the seriousness of kidney disease, the importance of testing those at high risk (those with diabetes, high blood pressure, or a family history of kidney failure), and the availability of treatment to prevent or slow kidney failure.
http://nkdep.nih.gov/
Kidney & Urology Foundation of America
The Kidney & Urology Foundation of America is a national, not-for-profit organization dedicated to helping people avoid the debilitating effects of kidney and urologic diseases.
www.kidneyurology.org
United States Renal Data System
The United States Renal Data System (USRDS) is a national data system that collects, analyzes, and distributes information about end-stage renal disease (ESRD) in the United States.
www.usrds.org
NephrOnline
This is a news page about Nephrology News & Issues.
www.nephronline.com
The Nephron Information Center
The Nephron Information Center is a non profit organization. Its primary focus is to support the generation and dissemination of valid health information relevant to the kidney community as well as to the public.
www.nephron.com
RenalWeb: Vortex Web Site of the Dialysis World
With hundreds of web sites containing dialysis product information, RenalWEB has function as a “daily newspaper” for useful information, new products, services, and educational resources since 1999.
www.renalweb.com
American Association of Kidney Patients
The American Association of Kidney Patients (AAKP) is a national non-profit organization founded by kidney patients for kidney patients. We strive to educate and improve the health and well-being of chronic kidney disease (CKD) patients, those on hemodialysis, peritoneal dialysis and transplant recipients.
www.aakp.org
Kidney Directions: For Research in Polycystic Kidney Disease
www.renalinfo.com
United Network of Organ Sharing
The United Network for Organ Sharing (UNOS) is a non-profit, scientific and educational organization that administers the nation’s only Organ Procurement and Transplantation Network, established by the U.S. Congress in 1984.
www.unos.org
Polycystic Kidney Disease Foundation
Polycystic Kidney Disease is the most common genetic, life threatening disease affecting more than 600,000 Americans and an estimated 12.5 million people worldwide. PKD affects more people than cystic fibrosis, muscular dystrophy, hemophilia, Down syndrome and sickle cell anemia — combined. In this web site, you’ll find a series of articles, books, audio tapes and online resources covering the basics of PKD.
http://www.pkdcure.org/site/PageServer
Life Options
Life Options is a program of research, research-based education, and outreach founded in 1993 to help people live long and live well with kidney disease. A national panel of doctors, researchers, patients, nurses, social workers, dietitians, and ESRD Network directors reviews all Life Options materials and helps guide research.
www.lifeoptions.org
Renal Support Network
The Renal Support Network (RSN) is a nonprofit, patient-focused, patient-run organization established in 1993 to provide non-medical services to those affected by chronic kidney disease (CKD). RSN strives to help patients develop their personal coping skills, special talents, and employability by educating and empowering them (and their family members) to take control of the course and management of the disease. A vital role of RSN is to provide lawmakers and policymakers with the patients’ perspective on the needs and capabilities of people with CKD.
http://www.rsnhope.org/about/about_us.php
I Hate Dialysis
This is a web site for patients by patients. They are a community that is very supportive of each other and they help new patients and veterans of this disease cope with the daily struggles of living with kidney disease. If you are affected by kidney disease you are welcome here. http://www.ihatedialysis.com/
