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Dialysis Patient Support

Once you and your doctor make the choice to start dialysis, it can be an overwhelming and emotional situation. Whether you choose Hemodialysis (HD) or Peritoneal Dialysis (PD), it’s natural to have questions and feel anxious. However, with proper knowledge and a strong network of support, you may find that your therapy can become part of your routine. The following guide is for patients who elect to do PD therapy. It is designed to help you understand the PD patient experience and where to turn if you need help. If you have any questions about the information discussed below or other topics, be sure to talk with your doctor or dialysis nurse.

Preparing for PD

PD care team

The most important thing to remember when starting PD is that you are not alone. While on PD, you may have a whole team of people dedicated to making sure you have the best care available, the resources you need, and are living life to the fullest. Your core team is likely made up of your social worker, nurse, nephrologist and dietitian. Whether you need help with performing peritoneal dialysis, ordering your PD supplies, or have questions about your daily activities, your PD care team will be there for help and advice. No question should be off limits, and they are usually a phone call away.

Types of PD

There are two types of PD: Continuous Ambulatory Peritoneal Dialysis (CAPD) and Automated Peritoneal Dialysis (APD), sometimes referred to as Continuous Cycling Peritoneal Dialysis (CCPD). With CAPD you typically dialyze 24 hours a day. Each exchange consists of drain, fill and dwell. During the drain & fill phase of the exchange, the patient is connected to the dialysis solution (3-5 times a day). This portion of the exchange is manual, and usually takes about 30 minutes. The dwell phase of the exchange lasts between four and six hours. APD, on the other hand, is performed with a device (commonly referred to as a “cycler”) that automatically transfers the PD solution for you while you sleep. With APD, you typically do not have to perform any manual solution exchanges during the day. However, some patients might have to do one or more manual exchanges in the afternoon (also referred to as “mid-day exchanges”). You and your doctor will talk about which of these is the best option for you, and you’ll learn more about your chosen type of PD during the PD training program.

Getting a PD catheter

After you and your doctor have made the decision to start PD, you will have an outpatient surgery to insert a PD catheter into your abdomen, which extends about six to twelve inches outside your body. This catheter is a soft plastic tube that allows the PD solution to be transferred into and out of your abdomen. You will be able to go home the day of your surgery and should be able to return to most of your normal activities within seven to ten days.

PD Training Program

After your catheter is inserted and the exit site heals, you will participate in a one-to-two week comprehensive training program that is tailored to your specific needs and situation. During this time, you’ll meet your care team, and they may make adjustments to your diet, fluid intake and medications. The training program will provide the education, tools and support needed for you to safely and confidently perform PD independently at home. It will cover a wide range of topics, such as: how to order and store supplies, cleaning your catheter, performing PD solution exchanges, and recording important information. If you have a caregiver that assists you in your treatments, he or she should come to the training program with you.

When preparing for the training program, it’s important to keep in mind that if you live in a more rural area, the training program might mean you’ll need to make lodging arrangements and/or find someone to help watch your children for an extended period of time.

Once you’ve completed the training program, your nurse will have daily phone calls with you during the first week or until you become comfortable with the process.

Living life while on PD – post training

Kidney disease may change your life, but it doesn’t have to control it. PD may provide the freedom, flexibility and satisfaction that can help you feel like you’re living, not just surviving. Once you complete your training and start preforming PD independently in your home, you’ll begin settling into a day-to-day routine. Here are some of the things that may be new in your life, but with the right knowledge and an optimistic attitude, they’ll quickly become second nature to you.

PD exchanges

During the PD training program, you’ll learn how to perform a PD solution exchange. An exchange is when you replace the old PD solution, which has collected wastes and fluid from your body, with new PD solution. You and your doctor will talk about how often you should do these exchanges, depending on your individual needs and what type of PD you are doing.

When completing your exchanges at home, be sure your surroundings are clean and dry. You’ll need to keep things as sanitary as possible, such as washing and drying your hands thoroughly, closing all doors, vents and windows, turning off any fans that are running, and making sure any pets are out of the room.

After each exchange is completed, the waste will need to be disposed of properly. All fluids should be emptied from the bags and tubing into a toilet or drain, then the bags should be tied to prevent leaks. Waste materials, such as plastic bags and tubing, should be placed into a tightly sealed garbage bag and discarded with household trash, if allowed by your waste hauler. Often the boxes your supplies come in can be recycled.

Storing and ordering your PD supplies

The equipment needed to perform PD exchanges is fairly compact. The cycler that’s used in APD is about the size of a small suitcase, and most people keep the cycler on a cart or an end table near their bed. The stand used for CAPD takes up a little more space than a floor lamp and can be moved with you throughout your house. In addition to this equipment, you will need to find a clean, dry space to store your PD supplies, such as the PD solution bags and tubing. Most people find that a closet can house a month’s worth of supplies. During the PD training program, your dialysis center will help you complete your first supply order so it’s ready for you as soon as you come home.

Catheter care

Taking care of your catheter and exit site is the key to staying healthy while on PD. Some important things to remember when handling your catheter and caring for your exit site are:

  • Clean and monitor your access daily.
  • Always wash and dry your hands thoroughly before touching your exit site.
  • Before each exchange, make sure your catheter is free of cracks, slits or holes.
  • When not completing an exchange, keep a clean dressing over your access site and secure the catheter end to your skin to avoid tension or tugging.
  • Your exit site should never be red, painful, swollen or have a discharge. If it is, call your doctor right away. It’s good practice that if something doesn’t feel right, tell your doctor or nurse sooner rather than later.

Stay engaged, get support and live your life

After starting PD, it’s normal to take time to adjust to all the changes happening in your life. There are many changes that affect your body, home, lifestyle and emotions. To make the most of it, it’s important that you take control and stay engaged in your care. Ask questions. Do research. Go online or check out the library. Talk to PD patients about their experience, and be open with your doctor and nurse. Never be embarrassed to ask questions, no matter what they are.

It’s also important to help your family understand what you are going through and how CKD and dialysis are affecting you. Keeping an open line of communication with your family or caregiver will help ease the difficulty of the new things that are happening. Also, keep in mind that they are facing a lot of changes too, and try to make a point to not ignore or overlook their needs. It’s best to try to take each change day by day with an optimistic and positive attitude.

And always remember, no matter what you need, your care team is there for support. You are not alone, and people want to help. Choosing PD can provide you with freedom and flexibility to continue leading a normal life, doing the things you love, with the people you love.

For further support

There are many organizations that you can turn to for further support. Below you’ll find a list of websites that will provide more in-depth information on CKD and PD.

American Association of Kidney Patients (AAKP)

The AAKP is a national non-profit organization founded by kidney patients for kidney patients. It's a great place to learn more about kidney disease, find important information and publications, and get support from people who understand exactly what you're going through.

Renal Support Network (RSN)

The Renal Support Network is a patient-focused, patient-run organization. Its website provides a wealth of useful information and support for people affected by Chronic Kidney Disease (CKD) and on dialysis.
Patient-to-patient help and support is only a phone call away on the Patient HOPEline: 1-800-579-1970 from 10am to 8pm PST

This patient-to-patient forum provides an online community of patients who are very supportive of each other and helps new patients and experienced patients with kidney disease cope with the daily struggles of living with their illness.

Home Dialysis Central

Sometimes, you may have a question or just want another patient's viewpoint. On the Home Dialysis Central Forum, you can post questions to, and read posts from, Peritoneal Dialysis (PD) or Home Hemodialysis (HHD) patients, as well as healthcare professionals.
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