If you or a family member have been diagnosed with chronic kidney disease (CKD), you are not alone. There are 37 million Americans living with CKD, roughly 500,000 people are on dialysis due to chronic kidney disease and about 250,000 people are living with a kidney transplant.
This is life-altering for you and your family. There is a lot to process and learn. The positive: you will learn, adapt, and – most importantly – keep living your best life!
You might have some of the following questions:
What is CKD? I know I have it, but tell me more.
Chronic kidney disease (CKD) is characterized by a gradual loss of kidney function over time. You have two kidneys that are responsible for filtering wastes and excess fluids from your blood, ultimately creating urine. Kidneys also help maintain the levels of minerals and salts in the blood. There are five stages of CKD based on how well your kidneys are working. The higher the stage number the worse your kidneys are functioning. At this point, if you are reading this you or your family member are probably either close to or in stage 5 (also called End-Stage Renal Disease or ESRD) and have been monitoring this with your nephrologist over time. To learn more about different stages, refer to our previous post on the CKD stages and from the Resources Section below.
Can I stop my kidneys from failing and requiring dialysis?
The early stages of CKD do not require dialysis and can last for many years. If you or your loved one was diagnosed at an earlier stage, there may be several lifestyle modifications or medications to manage underlying causes, such as diabetes and blood pressure that can help to slow CKD progression. Your nephrologist will have the best information on how to proceed for you. If you are in the later stages of CKD, there might not be as many options. Always consult with your nephrologist and get a second opinion if you feel the need.
There are many resources to help you and your family better understand CKD and what you can do to help slow the progression in discussion with your nephrologist. See the Resources Section further below to learn more.
Why did this happen to me or my family member?
There is not always an answer to this question. The two most common underlying causes are high blood pressure and diabetes, but sometimes one cause cannot be identified. Multiple factors can contribute to CKD, including underlying causes, individual health choices and genetics. Your physician may work with you to determine the underlying cause to help inform treatment options, but don’t expect to get a final answer to your question why this happened.
It can be challenging to let go of the “why did this happen to me or my family member question”, but remind yourself the most important next step is to figure out how to make the best decisions for you and your family so you can live your best life! Remember, you are not alone! Family, friends and your health team are there to support you. Ask your nephrology team (nephrologist, dialysis nurse, dietician and social worker) about local support groups, and look to the National Kidney Foundation and other organizations for guidance as well.
How long can I wait before I start dialysis?
If you are reading this post, chances are your doctor may have already told you that it is time to consider dialysis. Maybe you are wondering how long until you MUST begin dialysis. While you should take some time to consider the best option for you, you don’t want to wait until it is an emergency. It takes time to heal from the procedures that will allow your blood to be dialyzed. For example, vascular access for hemodialysis takes 4-6 weeks to mature enough to be used. If you wait too long for this surgery, an emergency catheter might need to be placed instead which has a higher risk of infection. Giving yourself time to plan ahead for the procedure, regardless of which type of access you choose, is the safer choice.
I am told I must go on dialysis. How do I choose the best option for me?
Accepting that you or your family member must be on dialysis is a huge mental hurdle for most people. Once you have accepted this, the next step is to figure out what works for you and your family. If you are the person who is living with CKD, you are dealing with the diagnosis both physically and emotionally. Your close family and friends who are part of your support system are also affected and, depending on the option you choose, might need to be involved to help you all maintain a happy and balanced life.
What types of dialysis are available?
There are two types of dialysis:
Hemodialysis (HD) - blood is pumped out of your body, filtered via a dialysis machine and then returned to your body.
Peritoneal Dialysis (PD) - blood is filtered inside your body using the inside lining of your abdomen as a filter.
Both types of dialysis can be done at home or at a dialysis center and will be reviewed further below.
How do I choose the best dialysis option for me?
There are several considerations when choosing among dialysis options at home or in a center including personal preferences, lifestyle choices, work commitments, insurance coverage, and more.
Here are a few questions to consider:
How private are you?
Are you a private person who doesn’t want people to know about your dialysis?
Are you a social person who wants to interact with others who are going through the same thing and are on dialysis?
Are you not sure how you feel about it all?
What kind of lifestyle do you want?
Do you want to keep this private and manage your treatments on your own?
How do you feel about dietary restrictions? Dietary restrictions may be less strict for those on peritoneal dialysis compared to hemodialysis.
Do you want to be in control of your treatment?
Do you want to have a professional manage your dialysis treatments?
What does your support system look like?
If considering in-home dialysis:
Do you have someone who can help with in-home dialysis? Both you and your partner would need to complete training.
Are you able to create a clean space for treatments and storage space?
When would both you and your partner be available for treatments? You will have to determine the best schedule that works for both of you.
If considering in-center dialysis:
Can someone or multiple people help with reliable transportation to and from a dialysis center? If not, check with the dialysis center for local transportation options.
What time commitment works best for you and your care partner's schedule?
Dialysis Options Overview
Your physician will give you a dialysis prescription designed for you. Below are general guidelines.
Type of dialysis | Number of days per week treatment needed | Length of treatment & clean up time where applicable | Care partner support & training needed |
Home Manual Peritoneal Dialysis (PD) | 7 days | 2 - 3 hours split into 4 exchanges (30-40 minutes each exchange) | Dependent on the individual being dialyzed. Care partner can help with hanging dialysis solutions bags and managing inventory of bags, act as timer for the exchanges, help with blood pressure readings and keeping a list of supplies. |
Home Cycler Nocturnal Peritoneal Dialysis (PD) | 7 days | Overnight 8 -12 hours (includes multiple exchanges) | Dependent on the individual being dialyzed. Care partner can help with the lifting of the heavier dialysis bags, and as needed if alarms go off in the evening. |
In-Center Peritoneal Dialysis (PD) | 7 days | Dependent on the local dialysis center capabilities, it is not offered everywhere and often reserved only for patients who are not able to do PD at home due to age/health reasons or have failed hemodialysis. | Transportation to and from dialysis center or hospital.
|
Standard Home Hemodialysis (HD) | 3 Days or Every other day | 3 - 3.5 hours per day. Plus about 45 minutes of set up, and clean up time. | Care partner needs to be trained and to stay nearby for the whole treatment or in nearby room. |
Home Short daily hemodialysis (HD) | 5-7 Days | 2.5 - 4 hours per day. Plus about 45 minutes of set up, and clean up time. | Care partner needs to be trained. Amount of help needed dependent on the individual being dialyzed. Care partner can help with setup and clean up, getting supplies & troubleshooting. |
Home Nocturnal Hemodialysis (HD) | 7 days | Overnight treatment for 7-8 hours. Plus about 45 minutes of set up, and clean up time. | Care partner needs to be trained. Help with setup and clean up, and troubleshooting if alarms go off in the night. |
In-Center Hemodialysis (HD) | 3 days | 3- 3.5 hours per day | Care partner can help with application of lidocaine if needed and transportation to and from the dialysis center. |
In-Center Nocturnal Hemodialysis (HD) | 3 days | Overnight treatment for 7-8 hours | Care partner can help with application of lidocaine if needed and transportation to and from the dialysis center. |
Think about your current daily activities: Do you work, go to school, are you retired or not working?
If working or going to school
Can your work schedule work around dialysis center hours? Keep in mind travel to and from the location, as well as potential on-site delays in treatment.
Is having the flexibility to do dialysis on your schedule important to you?
If retired or not working
If considering in-center dialysis, what is your typical sleep pattern? Are you a morning or an evening person? Determine the dialysis time that will have the least impact on your natural circadian rhythm and request it.
What are you most comfortable with physically?
A small incision in your abdomen for access (peritoneal)
Surgical procedure for vascular access placement and regular checkups to ensure it is working properly (hemodialysis)
Full surgery (kidney transplant)
What is covered by your current insurance provider?
The U.S. Congress passed the Social Security Amendments of 1972 which guarantees Medicare coverage for most people with kidney failure, even those under age 65, stating that chronic kidney disease constitutes a disability for the purposes of Medicare.
Although Medicare covers most in-center and in-home hemodialysis options as well as peritoneal dialysis, along with necessary equipment and supplies, there may be some out-of-pocket expenses depending on your choice of dialysis and what primary and secondary insurance you have. Learn more about Medicare Coverage of Kidney Dialysis & Kidney Transplant Services here. The book “Help, I need dialysis” also provides details on what is covered and timing of when coverage starts. You can learn more about additional government financial help here.
How do I pick which dialysis center to go to?
All dialysis treatments whether at home or in-center are managed by a dialysis center. Depending on where you live you might have multiple options of centers. It is a good idea, if possible, to visit the clinic and see for yourself how clean and efficient it seems. You can also look up and compare dialysis facility reviews on the medicare.gov website here. If you don’t like your dialysis center options near where you live or your health plan limits your options, you can think about moving, changing your doctor, choosing to do at-home dialysis or asking your healthcare provider plan about other options.
Suggested questions you can ask a prospective dialysis center include:
What are the clinic hours? What holidays do they change hours?
Can I talk to others who are doing dialysis at the clinic?
What educational or exercise programs do you offer?
What treatment shifts do you have and how much choice will I have in terms of picking the shift I prefer?
Are the hemodialyzer filters reused or are they replaced for each new person?
Do you offer numbing medication to help with needle placement?
Will you teach me how to put in the needles if I want to learn?
I want to do at-home dialysis. What do I need to know?
Ask your dialysis center for their training details, including how long each training is and when it is offered. You will need to coordinate with your care partner as well. Read "Help I need dialysis? How to have a good future with kidney disease", the authors go into detail on how to get set up for at home dialysis.
Thinking about these questions ahead of time can help as you consider the two types of dialysis treatments reviewed below.
Dialysis Treatments Options
You can review the pros and cons of each option in detail on the National Kidney Foundation website and below for key considerations.
Peritoneal dialysis (PD)
Peritoneal dialysis uses the abdominal lining to filter the blood. The exchange procedure involves 3 steps: Drain, Fill and Dwell. The NIDDK gives a thorough explanation of how peritoneal dialysis works with visuals here.
Taking into consideration the questions reviewed above, below you will find pros and cons of peritoneal dialysis for you to consider:
Physically, PD is the gentlest on your body as it uses the lining of your abdomen to filter your blood inside your body. It requires minimal surgery to create a port in your belly that you will use for fluid exchange. The port is ready for use in about two weeks. This option preserves vessels for use in the future for hemodialysis, if needed.
PD can be done in your home. You can keep this private; people won’t necessarily even know you are on dialysis if you manage it well. The port is on your belly, so a shirt or swimming suit can cover it. You won’t interact with anyone else who is having dialysis unless you want to.
There is more flexibility. There are often fewer diet restrictions than hemodialysis. For those who travel frequently, it is easier to travel with PD as no machine is required, but you do have to manage ahead of time to have the dialysate bags delivered to your location.
Some studies show longer lifespans and improved health outcomes for those using PD.
PD is done daily. Meaning you will be managing dialysis every single day. However, it does take less time overall than in-center hemodialysis.
PD will require you – and potentially a family member – to manage the large amounts of dialysis solutions that are used and to keep track of the exchange time for the solution. It is typically easier to manage for those younger than ~80 years old. You will also need storage space for these solutions.
Because of the glucose in dialysis fluid, weight gain may occur and/or make managing diabetes more difficult.
PD will buy you time at minimum, as there may come a day when you must switch to HD; during this time you can get a fistula placed giving the fistula time to mature so it functions optimally when needed.
Hemodialysis (HD)
In hemodialysis, your blood is filtered outside the body in a filter called a dialyzer, which is inside a dialysis machine. The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) gives a thorough explanation of how hemodialysis works with visuals here.
Thinking about those earlier questions, below are a few considerations for hemodialysis:
Physically, this is more taxing on the body, but also commonly used. It requires vascular access surgery. There are 3 types of vascular access options (AV fistula, AV graft, and venous catheter). LifeOptions reviews these access options here. Your doctor will most likely recommend which access option is appropriate based on your needs. You will also have regular checkups to ensure your access is healthy.
This is done at a dialysis center or at home.
In a dialysis center, professionals manage your dialysis treatments. Treatments are generally scheduled by the center three times a week and there is less flexibility.
There is less flexibility with diet and travel as compared to PD.
If done at a center, trained staff manage treatments.
Home HD can also be done which allows you to determine the hours when you start and end treatment in the comfort of your own home. For at-home HD, in addition to your own training, a trained dialysis partner must always be present. Additionally, a clean, dedicated space and sufficient storage will be required.
In terms of health outcomes, HD 5-7 days per week is superior to 3 times per week (the typical center schedule).
Your access port will be visible, so people may ask about or at least notice it. If you go to a dialysis center for treatment you will see other patients and your dialysis team regularly including dialysis nurses, technicians and your nephrologist who is required to be there at least once a month.
Kidney Transplant
Kidney Transplantation is typically not an immediate option. You will have to be evaluated for your eligibility to be put on the kidney transplant list. Then you must weigh the risks and lifestyle changes. The NIDDK reviews kidney transplantation well here.
There are pros and cons, some of which are below for you and your family members to consider.
This is a significant surgery; you will be in the hospital several days afterward.
For the rest of your life with this kidney, you will have to take anti-rejection medicines which suppress your immune system and can lead to infections.
Note: A new kidney transplant protocol from Stanford called the “dual immune/solid organ transplant,” or "DISOT " allows for a kidney transplant without the need for immunosuppressive medication. It was officially approved by the FDA within the last month for specific conditions that affect the kidneys. You can read about the details here. It is a promising new development. Three children have been living normal lives without immunosuppression medication for over a year and the team at Stanford hope to expand the eligible participants to adults going forward.
Long-term use of immunosuppressive anti-rejection medication can lead to many other health complications.
You can potentially reject the kidney and have life-threatening complications during and after surgery.
Transplanted kidneys don’t typically last for a lifetime, though they can give you many years living dialysis-free. There is a good possibility that you will need another kidney transplant later in life or go on dialysis.
Greater flexibility with fewer diet restrictions, easier travel, and no dialysis treatments to schedule.
The majority of the transplant surgery costs are taken care of by the government, but there is 20% of the Medicare-approved amount that is paid by the individual getting the transplant. This can be a challenge. It is important to understand the costs and what help is available to you. The American Association Kidney Fund for example offers multiple assistance programs.
Paying for medication can be a challenge. Check your insurance prescription coverage to find out what your co-pay will be for generic and name-brand medication. It is important that you know what you will be responsible for paying each month. If you have Medicare you will need to make sure you enroll in Medicare Part D - the prescription program.
Most drug companies have patient assistance programs to help people who cannot afford to buy their medicine. The following websites offer a database of patient assistance programs along with information regarding each program's qualification rules and forms: RxAssist and Partnership for Prescription Assistance.
Bottom line - Consider the questions above, utilize the resources below and talk to your nephrologist and support system to determine which option works for you to help you live the happiest life. Remember, different strokes for different folks. You must be true to yourself and what will make you feel most comfortable. Your needs may change over time, and you can change treatments if the plan you started with doesn’t work for you anymore.
Resources
