Kidney Failure

About 40-50 percent of PKD patients do experience kidney failure. Here you can learn all the ins and outs of dialysis and transplantation, so you can make the educated decisions you need to continue living a healthy and productive life.

 

Quick Notes on PKD

Important information in one quick click.  Quick Notes on PKD are designed to provide accurate and timely information in a short and easy to understand format.  Choose the topics of interest to you and read, print or take to your next doctor visit.

Quick Notes on PKD: Questions to Ask Before a Transplant 
Quick Notes on PKD: Pediatric Transplantation 
Quick Notes on PKD: Five Steps to Receiving a Deceased Donor Transplant 

Visit www.kidneylink.org for more comprehensive information on transplantation.

 

Common Transplant Questions

Click a question below to show or hide the answer. You can also download a document of all questions and answers in this section here.

Why you want to get on the transplant list early.

Currently, the waiting list for a kidney transplant in the United States is more than 95,000 people – the sooner you can get onto the list, the sooner you can move towards the top.

How and why does the body reject a transplanted kidney? What happens then?

Rejection is when the organ recipient's immune system recognizes the donor organ as foreign and attempts to eliminate it. It often occurs when your immune system detects things like bacteria or a virus. Some degree of rejection occurs with every transplant, but how clinically significant the rejection depends on the individual. 
At least one episode of acute rejection is common within the first year after a transplant, but it can also occur years after a transplant. Despite the use of immunosuppression therapy, acute rejection can occur and often lead to chronic rejection. Chronic rejection, which is characterized by gradual loss of organ function, is an ongoing concern for transplant recipients because it can occur weeks, months or years after transplantation. Therefore, organ recipients should be aware of the signs of both acute and chronic rejection. Call your doctor as soon as you experience any of them. Symptoms include:

  • Pain or tenderness over the transplant site
  • Fever
  • Flu-like symptoms such as chills, nausea, vomiting, diarrhea, tiredness, headache, dizziness and body aches and pains
  • Change in pulse rate
  • Weight gain
  • Swelling
  • Less urine

You can help prevent rejection by taking your medicines and following your diet, but watching for signs of rejection – like fever or soreness in the area of the new kidney or a change in the amount of urine you make – is important. Report any such changes to your health care team. Transplantation isn't for everyone; however, medical advances are making the procedure safer and easier for donors and recipients.

What kinds of medications will I need to take after a transplant?

Your body's immune system is designed to keep you healthy by sensing "foreign invaders," such as bacteria, and rejecting them. But your immune system will also sense that your new kidney is foreign. To keep your body from rejecting it, you'll have to take drugs that turn off, or suppress, your immune response, called immunosuppressants.
These drugs include:

  • cyclosporine (Sandimmune,Neoral, Gengraf)
  • prednisone,methylprednisolone
  • azathioprine (Imuran)
  • daclizumab (Zenapax), basiliximab (Simulect),ATG (Thymoglobulin), OKT3 and ALG
  • mycophenolate mofetil (MMF, CellCept)
  • tacrolimus (Prograf, FK506)
  • sirolimus (Rapamune).

What about the medications? Do they cause complications?

Immunosuppressants can weaken your immune system, which can lead to infections and an increased likelihood of some cancers, including skin and lymphatic cancers. Some drugs may also change your appearance. Your face may get fuller; you may gain weight or develop acne or facial hair. Not all patients have these problems, though, and diet and makeup can help.

Is it better to receive a cadaver or living donor kidney? What's the difference?

About 88.3 percent of kidneys transplanted from cadavers (persons who died recently) were still functioning well at one year after surgery. The results are even better for kidneys transplanted from living donors. One year after surgery, 94 percent of these kidneys were still functioning well. It must be emphasized that not all transplants will last this long. The numbers represent the average figure, with some lasting longer and some shorter.

How long will I have to wait for a kidney transplant?

How long you'll have to wait depends on many things but is primarily determined by the degree of matching between you and the donor. Some people wait several years for a good match, while others get matched within a few months. OPOs (Organ Procurement Organization) are responsible for identifying potential organs for transplant and coordinating with the national network. The 69 regional OPOs are all UNOS members. When a deceased donor kidney becomes available, the OPO notifies UNOS, and a computer-generated list of suitable recipients is created. Suitability is initially based on two factors: 

BLOOD TYPE. Your blood type (A, B, AB, or O) must be compatible with the donor's blood type. 

HLA FACTORS. HLA stands for human leukocyte antigen, a genetic marker located on the surface of your white blood cells. You inherit a set of three antigens from your mother and three from your father. A higher number of matching antigens increases the chances that your kidney will last for a long time.

If you're selected on the basis of the first two factors, a third is evaluated:

ANTIBODIES. Your immune system may produce antibodies that act specifically against something in the donor's tissues. To see whether this is the case, a small sample of your blood will be mixed with a small sample of the donor's blood in a tube. If no reaction occurs, you should be able to accept the kidney.

When can I get on a waiting list for a transplant?

To get on the national waiting list, you should follow these steps:

  • Receive a referral from your physician.
  • Contact a transplant hospital. Learn as much as possible about the 200+ transplant hospitals in the United States and choose one based on your needs, including insurance, location, finances and support group availability.
  • Schedule an appointment for evaluation to determine if you are a good candidate for transplant.
  • During the evaluation, ask questions to learn as much as possible about that hospital and its transplant team.
  • The hospital's transplant team will decide whether you are a good transplant candidate. Each hospital has their own criteria for accepting candidates for transplant.
  • If the hospital's transplant team determines that you are a good transplant candidate, they will add you to the national waiting list.

Many transplant centers do not like to perform transplants or put patients on the cadaveric transplant waiting list until their renal disease is advanced enough to require dialysis.

Can I have a baby after a transplant?

The first woman to become pregnant after a transplant was reported in1963. Since that time, there have been numerous successful pregnancy outcomes in many types of transplant recipients. However, the safety of pregnancy for individual recipients must include the consideration of risk to the mother, baby and transplanted organ and requires the partnership and support of the obstetrician, transplant team and other specialists.

Will a transplant cause any complications?

A number of postoperative complications are possible:

  • Infections
  • High blood pressure
  • Rejection
  • Diabetes

There is no way to predict accurately which patients will have problems. The transplant team will do their best to reduce the likelihood of complications and to treat them promptly if they occur. Following instructions carefully and keeping the transplant team informed of any difficulties will help a patient return quickly to a normal, active life.

How often do I need to see my doctor before and after a transplant?

First, your doctor recommends that you be evaluated for a transplant and refers you to a transplant center. You are evaluated for a transplant by the medical team at a transplant center. Assuming you are accepted as a transplant candidate, you are registered on the national organ transplant waiting list. After you are placed on the transplant list, it is very important you are available at all times, in case someone from your transplant team calls you about a potential kidney donor.  

Within one to two months after receiving a new kidney, most patients recover fully, return to work, and resume a normal, active life. At first, you will see your doctor quite often for follow-up visits, and you will be monitored carefully to make sure your new kidney is functioning properly. You will continue to work closely with your transplant surgeon and nephrologist, your coordinator, and members of the social services team. Your local physician will remain a key member of the care-giving team, playing an active role in your recovery. 

At follow-up visits, you will participate in a regular schedule of diagnostic and medical care, including physical examinations, complete blood, urine, and X-ray analysis, review of medications, dental care with antibiotic prophylaxis, and annual eye exams and, for women, gynecologic care. This follow-up care is carefully coordinated among your surgeon, nephrologist, and referring physician to ensure it is optimally effective and convenient for you.

What's the process for receiving a transplant?

The matching process contains five steps:

  • An organ is donated. When the organ becomes available, the OPO managing the donor sends information to UNOS. The OPO procurement team reports medical and genetic information, including organ size, and condition, blood type and tissue type.
  • UNOS generates a list of potential recipients. The UNOS computer generates a list of potential transplant candidates who have medical and biologic profiles compatible with the donor. The computer ranks candidates by this biologic information, as well as clinical characteristics and time spent on the waiting list.
  • The transplant center is notified of an available organ. Organ placement specialists at the OPO or the UNOS Organ Center contact the centers whose patients appear on the local list.
  • The transplant team considers the organ for the patient. When the team is offered an organ, it bases its acceptance or refusal of the organ upon established medical criteria, organ condition, candidate condition, staff and patient availability and organ transportation. By policy, the transplant team has only one hour to make its decision.
  • The organ is accepted or declined. If the organ is not accepted, the OPO continues to offer it for patients at other centers until it is placed.

How do I work with a transplant team on next steps?

Postoperative care begins with a team of heath professionals within the hospital. Careful, comprehensive post-surgical monitoring constantly evaluates whether the body is accepting the new organ. In addition, the amount of time you spend in the recovery room, waking up and getting to the point that you're ready to go home, will vary from patient to patient. Because individual experience after recovery is so unique, it is important to discuss with your physician what to expect after surgery.

After a transplant, are you cured?

Unfortunately, there is not cure for PKD. But, there is no evidence that polycystic kidney disease occurs in the transplanted kidney. This is expected since, ADPKD is inherited and a transplanted kidney would not contain the genetic abnormality. Survival rates following kidney transplantation in patients with polycystic kidney disease are similar to all other patients undergoing transplantation.


Common Dialysis Questions

 

How is dialysis done?

Dialysis is done by using a special fluid called dialysate. Dialysate, a mixture of pure water and chemicals, is carefully controlled to pull wastes out of your blood without removing substances your body needs.

A semipermeable membrane (one with microscopic holes that allows only certain types of particles to pass through) keeps the blood apart from the dialysate. This membrane lets the wastes and fluid in your blood flow through into the dialysate. Your blood cells and larger molecules, like protein that you need, cannot fit through the holes.
There are two main types of kidney dialysis, hemodialysis and peritoneal dialysis (PD).

Hemodialysis
In hemodialysis a man-made membrane, or dialyzer, partly does the work of the kidneys to filter waste and remove extra fluid. Blood circulates through the dialyzer for several hours during a treatment, with a machine controlling the speed and several safety factors. Hemodialysis is most often done three times per week for three to four hours at a dialysis center. There are also two less common methods of hemodialysis. Nocturnal hemodialysis, typically performed in the home, involves extended treatments three or more nights a week while you sleep. Daily home hemodialysis involves two- to three-hour sessions five or six times a week. Medicare and private insurance companies may not pay for the extra treatments that are often prescribed for nocturnal hemodialysis and daily home hemodialysis.

Before you can begin hemodialysis treatment, you will need a dialysis access to allow blood to flow between your body and the dialyzer. You and your doctor will need to discuss your options to decide which access is right for you and your treatment.

Peritoneal dialysis (PD)
Peritoneal dialysis (PD) is a type of home hemodialysis. In peritoneal dialysis you fill up your abdominal cavity with dialysate through a catheter (a soft plastic tube). The peritoneal membrane that lines your abdominal cavity has many small blood vessels, so it serves as the semipermeable membrane between your blood and the dialysate. The dialysate stays in your abdomen and absorbs wastes and excess fluid from your blood for several hours. Then you drain it out and replace it with fresh dialysate.

Peritoneal dialysis (PD) is most commonly done using an automated machine, called a cycler, which allows fluid to be flushed in and out of the abdomen while a person sleeps at night. Some people choose to do a manual exchange, by performing four to five fill-and-drain exchanges per day depending on their lifestyle and dialysis needs.

Is it possible to sleep at night using a cycler for PD?

Yes. Most people have very little difficulty sleeping at night, even if they like to turn over in bed. Some people take a little while to get used to sleeping with the machine going. Others sleep well right from the start. During training for continuous cycling peritoneal dialysis (CCPD), the nurse will help you learn what to expect.

How does dialysis work?

Hemodialysis mainly works through two principles:

  • Diffusion, which is the movement of particles across a membrane with tiny holes in it (semipermeable) until the particle concentration on both sides of the membrane is equal, and
  • Ultrafiltration, by squeezing extra fluid out of the blood and through the membrane, under pressure. The pressure is supplied by the blood pump, which pushes blood through the dialyzer.

In peritoneal dialysis, there is no pressure pump to cause ultrafiltration. So, to remove fluid, PD works mainly through osmosis by using a chemical substance (in this case, sugar) to pull extra fluid across the membrane.

Which is better, peritoneal dialysis (PD) or hemodialysis (HD)?

PD and HD each have pluses and minuses. Which one is better for you will depend on your needs and lifestyle. Your doctor will be able to tell you if you are medically better suited for one treatment or the other, but most often, the choice will be yours.

PD may be a good choice if you want to keep a job, because you will have more control over your treatment schedule. PD also makes it easier to travel and allows a more liberal meal plan and fluid limits. There are also no needle sticks with PD. You many also want to consider that PD can cause weight gain and body image issues, due to the catheter that must stay in your abdomen. Treatments must be done with good hygiene and good technique to avoid infections, plus you need room to store the supplies.

HD may be a good choice if you want to have off-days without treatment, want to socialize with other patients, or don't want to have a catheter in your abdomen. Swimming is more possible with HD than with PD. Other aspects of HD include a more restricted diet, a more rigid treatment schedule that may conflict with work or school, more physical ups and downs and two needle sticks at each treatment.

Newer forms of HD, like daily home hemodialysis and nocturnal home hemodialysis (done at night while you sleep) are offered in some areas. Patients who use these new treatments have a less restricted diet and say they feel better, however, there are fewer off-days. Talk to your doctor about the pros and cons of these dialysis options to find out if they're right for you.

Keep in mind that you can always change treatments if your needs change.

If I start hemodialysis, how often will I have to get treatments?

The usual schedule for hemodialysis treatments is three times a week, either Monday-Wednesday-Friday or Tuesday-Thursday-Saturday. You will have the same morning or afternoon time for each treatment. The length of your treatment depends on what your doctor prescribes for you. Three to four hours is common, plus time to travel to and from the center, and often some waiting time when you arrive. If you don't like the treatment schedule you get, you can ask to be on a waiting list for a different time, or switch to a different center.

If I start PD, how often will I have to get treatments?

Peritoneal dialysis (PD) is most commonly done on a nightly basis using an automated cylcler machine while a person sleeps. A patient will typically be connected to the cycler for 8 to 10 hours each night and be free of dialysis during the day. Some people will choose to do manual PD, which usually means doing four to five exchanges per day. Each exchange takes 20 to 30 minutes, and they need to be spread out over the whole day to clean the blood well. A common manual PD schedule might be to do one exchange upon waking, one at lunchtime, one at dinner, and one at bedtime. A cycler can be used together with a manual exchange. The cycler can be used at night with only one exchange during the day.

Why do dialysis treatments take so long?

Healthy kidneys work 24 hours a day, 7 days a week. Dialysis replaces only a small amount of your kidney function. If you are not getting adequate dialysis, you will start to have symptoms of kidney failure, such as:

  • metallic taste in your mouth
  • fatigue
  • itching
  • loss of appetite

Your doctor may prescribe a bigger dialyzer, longer treatments or both to be sure you get as much dialysis as you need to feel good and keep doing the things you enjoy.

Will I have to quit work when I start dialysis?

No. You should not have to quit work when you start dialysis. Keeping your job provides benefits including income, health insurance, self-esteem and friendships. Working on dialysis tends to pose two related challenges. The first challenge is scheduling your job, dialysis and the rest of your life so they don't conflict. The second challenge can be figuring out which dialysis modality is best when you want to work but must be on dialysis.

If you choose in-center hemodialysis, talk with your nurse or social worker about scheduling your treatments so you miss as little work as possible. If you want more freedom in your dialysis schedule, you may ask if home dialysis is available in your area. You will need to consult with your doctor to determine if a home modality is right for you.

Choosing peritoneal dialysis or home hemodialysis, which are both types of home dialysis, may make it easier to work regular hours and perform dialysis. If you perform peritoneal dialysis and use an automated cycler at night while you sleep, you will be free of dialysis during the day. If you choose to do manual exchanges, you might need a half-hour break and a clean room to do an exchange during the work day.

Many people successfully work and get dialysis treatments. Upon starting dialysis, you may need a few weeks or months to adjust to dialysis, and then a period of working part-time before you get back up to speed. When you are ready, you can return to work full-time.

Can I travel on dialysis?

Yes. With proper planning, you can travel while on dialysis. Start small — with day trips and quick weekend getaways. Then you can build up confidence and work up to longer vacations.

If you are on hemodialysis, you can reserve a space at a center where you will be traveling. To find a center, use resources like DaVita's dialysis center locator. You can also call DaVita Guest Services at 1-800-244-0680 from 6 a.m. to 5 p.m. (PT).

How do I pay for dialysis?

If your kidneys have failed, you will need dialysis treatment. Dialysis—whether performed at home or at a dialysis facility—is not just time consuming, it can also be expensive. As health costs rise, you may be concerned about your ability to afford your treatment. The majority of dialysis costs are paid through medical insurance—either your own insurance or the government-sponsored Medicare program. A member of your health care team, your social worker, can help you explore different insurance options as well as government assistance programs for people who need dialysis.

Your medical insurance
Your medical insurance is insurance that is provided by your employer at work or insurance that you purchase for yourself.

Medical insurance provided by your employer at work is called an employer group health plan (EGHP). If you are retired and receive medical benefits from your former employer as part of your pension plan, this is also considered an EGHP. Many people believe if they must go on dialysis, they must quit their jobs. In most cases, this is not true. Although your kidney disease may make you feel ill, dialysis can help you feel better so you can continue to work. People in different stages of kidney disease are able to continue their employment.

As long as you are physically able to meet the demands of your job, your social worker will recommend you continue working in order to have coverage under your EGHP. Your EGHP can help pay for the majority of your dialysis costs, as well as any medicines you need and your doctor's visits. Questions about your health benefits should be addressed to your company's Human Resources Specialist or a Benefits Analyst. They can explain your coverage and refer you to the health plan's administrator if you have specific questions about what medical conditions are covered and how much they are able to pay. Some companies have their medical coverage with a Health Maintenance Organization (HMO). Depending on the HMO, you may have the option of receiving treatment at their facilities if they offer it. If you are retired and receive medical benefits as part of your pension plan, this also falls under EGHP.

Some people decide to buy insurance on their own if their employer does not provide medical insurance, if they do not like the benefits their EGHP offers or if they are not eligible for their EGHP. If you have personal medical insurance, you must pay a fee (called a premium) on a monthly, quarterly or yearly basis. The dialysis costs covered vary from plan to plan. One of your health plan's administrators can tell you what is covered and what your out-of-pocket costs may be. If you are looking to purchase a private plan to help offset the costs of dialysis, ask about the plan's policy on pre-existing conditions. A pre-existing condition is a health condition you received treatment for before joining their plan. Some insurance policies have restrictions on paying for treatments for pre-existing conditions.

If you do not have an EGHP or private insurance and you need dialysis, you may qualify for the government-sponsored medical insurance called Medicare.

Medicare
Medicare is not just for people who are 65 or older. In 1972, the Social Security Act extended all Medicare benefits to people of any age with end stage renal disease who need dialysis if they meet the following requirements:

  • You have paid the required amount in Social Security taxes through your job (check with your Social Worker or your local Social Security office for the exact amount to become eligible).
  • Or, you are the spouse or a dependent of someone who qualifies for Medicare because they have paid the required amount into Social Security.

Medicare is divided into two parts:  Medicare Part A and Medicare Part B. (As of January 1, 2006 Medicare added a third part, Medicare Part D, which deals with prescription drug coverage. This article does not refer to that area of Medicare.)  Medicare Part A is hospital insurance. If you need to be admitted into a hospital, Medicare will help cover those costs. Medicare will also help cover the costs of a nursing facility and hospice care as well as some home health care. When you turn 65, you get Part A automatically because you or your spouse paid Medicare taxes when you were working. You will not be charged any monthly fee or premium for Part A because you or your spouse paid Medicare taxes when you were working.

The other part of Medicare is Part B. Part B pays for doctor's appointments, outpatient hospital care and other services that Part A does not cover. If you have services or supplies that are medically necessary (supplies like dialysate if you are on peritoneal dialysis), Part B helps pay for those costs. Enrollment in Part B is not automatic. You must request enrollment in Part B. Also, Part B charges a premium. If you stop paying your premiums, your coverage under Part B will stop.

Dialysis patients need Part A and Part B of Medicare to cover certain dialysis and kidney transplant procedures. If you already have Medicare but decided not to enroll in Part B, you may find that the premium for Part B has increased. This increase in premium may be waived if you sign up for Part B because you have renal disease.

If you need to enroll in Medicare because of ESRD and you are under the age of 65, you can sign up at a local Social Security office. If you have not paid enough into Social Security to qualify for Medicare, you can pay a premium to enroll in Medicare if you have ESRD. Your social worker can advise you and help with the paperwork.

How your insurance and Medicare pays for dialysis
For patients who were automatically enrolled in Medicare because they are 65 or older, Medicare coverage for dialysis begins right away. However, if you are under 65 and only eligible for Medicare because of ESRD, your Medicare coverage for dialysis will not begin right away. Coverage will start right away for peritoneal dialysis patients and on your fourth month of dialysis treatments for hemodialysis patients. Until then, your medical insurance will be the primary coverage. This is why it's important to keep your EGHP or other medical insurance active.

When Medicare coverage begins on the fourth month, your EGHP insurance will continue to help pay the costs of your treatment. This is called a coordination period. Your personal medical insurance will pay first on your medical bills and Medicare will be the second payer. If there are still costs after your personal medical insurance has paid for your treatment, Medicare, as the second payer, may help cover these remaining expenses.

At the end of the coordination period (30 months), Medicare will pay first for your treatment and will become your primary insurance coverage. If there are still costs left over after Medicare has paid, your personal insurance may pay for the remaining expenses.

Most dialysis facilities are knowledgeable about insurance billing. If you have an EGHP or personal medical insurance, make sure they know so that your treatments can be billed properly.

Other programs that can help pay for dialysis
If you need financial assistance because of out-of-pocket costs that are not covered by Medicare and/or your medical insurance, your social worker has information about other programs that can help pay for your dialysis. Your social worker is a valuable resource when it comes to information about different state, federal and private programs that are aimed to help patients with chronic kidney disease.

Medicaid is a joint state and federal funded program that helps pay medical costs for people with limited resources. If you are not eligible for Medicare, you may be eligible for Medicaid. Medicaid coverage varies from state to state, so ask your social worker if you are eligible and how to apply.

If you are a veteran, the Department of Veteran Affairs has a program for vets who need dialysis. Retired military personnel and their spouses may also be eligible for assistance with costs related to dialysis. Your social worker will have more information about eligibility.

Private programs can also help offset your medical costs. Most pharmaceutical companies have patient assistance programs for people who have difficulty affording their prescription drugs. The American Kidney Fund has a program to help pay premiums on Medicare Part B or your supplemental insurance. The National Kidney Foundation  offers financial assistance with medications as well as emergency assistance for those with kidney disease.

Talk to your social worker. He or she can put you in touch with the resources you need and help you explore all the options available to you. Social workers can provide you with assistance and support. All you need to do is ask.

How can I care for my dialysis catheter?

A catheter is a plastic tube placed into a central vein in the neck or chest by a surgeon. Temporary catheters are held in place with stitches. Permanent catheters, meant to be used for a longer time, may be held in place by a special cuff under the skin and a few stitches. Catheters are a way to immediately access your blood for hemodialysis but are not recommended to be used for a long time.

Because catheters are both inside and outside your body, they are very prone to infection.

To care for your dialysis catheter

  • It is very important to always keep your catheter clean and dry. This may mean you can't swim or take showers or baths, but need to wash up with a washcloth instead. Ask your doctor to be sure you understand how to protect your catheter.
  • Be careful not to pull or tug on the catheter, especially while getting dressed and undressed. Your care team should teach you how to put a dressing over the catheter to protect it while it is not being used for dialysis.
  • Watch for signs of infection: redness, swelling, pain, pus or fever. Call your dialysis center right away if you notice any of these.
  • During dialysis, be sure the staff person who will connect your catheter to the dialysis tubing washes his or her hands first and wears gloves and a mask. You should wear a mask, too. The ends of the catheter should never be left open to the air.
  • Catheters can be "positional.” This means they may work better when you are sitting in one position than if you sit another way. Pay attention to what works best so you can tell your staff and get the best possible treatment.
  • Some people carry staph bacteria in their noses and throats without getting sick. If you are a staph carrier, ask your doctor about an antibiotic ointment you can put in your nose before dialysis. This can keep you from breathing staph germs onto your catheter and getting an infection.
  • Never use scissors near or around your catheter for any reason. With good care, a catheter can be a helpful "bridge" while your fistula or graft is healing or can allow you to have dialysis when other forms of access are not available.

Peritoneal dialysis (PD) catheter
For peritoneal dialysis, an abdominal catheter (tube) is a way to fill your peritoneal cavity with dialysis fluid and drain it out again. A PD catheter is ready to use two weeks after it is surgically placed, or even sooner in some cases.

As part of your PD training, you'll learn how to care for your catheter and prevent infections. Follow your care team's advice, and ask your PD nurse if you have questions.

Here are some ways to care for your PD catheter

  • Before you do a PD exchange or exit site care, put on a mask and scrub your hands well with liquid soap. Clean under your fingernails, between your fingers, the backs of your hands, and your palms. Use a timer to be sure you wash long enough, and make lots of lather to wash germs away.
  • Dry off with clean paper towels. Use a paper towel to turn off the faucet so your hands stay clean. Don't touch anything other than your catheter once your hands are washed. This will help you avoid infection.
  • Look at your catheter and tube each day: Are there cracks or holes? Look at your exit site: Is it red, swollen, painful or draining? If you see any of these problems or if your exit site feels tender or hardened, call your dialysis center.
  • Wash the skin around your exit site once a day, the way your PD nurse teaches you, start close to your catheter and move away in an outward motion. Rinse the soap off in the same way. Pat skin dry.
  • Apply antibiotic preparation recommended by your doctor to the catheter exit site to help reduce the risk of infection.
  • Fasten your catheter to your skin so it does not move around, using tape or a special "PD belt" to keep the catheter and tubing from pulling.
  • It's safest to avoid swimming and tub baths. If you do get your doctor's permission to swim, the ocean or a private, well-chlorinated pool are better choices than hot tubs, public pools, lakes or rivers. Follow your doctor's recommendation for an exit site dressing to use during swimming. Always clean and dry your exit site promptly after getting it wet.

What is "the thrill"?

The vibration of blood going through your arm is called the "thrill." You should check this several times a day. If the "thrill" changes or stops a blood clot may have formed. By immediately contacting your doctor or dialysis health care team the clot may be quickly dissolved or removed.

Using a stethoscope, or even putting your ear to the access, you can hear the sound of blood flowing through your access. This sound is called the "bruit." If the sound gains in pitch and sounds like a whistle, your blood vessels could be tightening (called stenosis). If the tightening becomes too severe, blood flow could be cut off completely.

During dialysis, your pre-pump arterial pressure is monitored. This will tell you how difficult it is for the blood pump to draw blood from your access. If the number is negative, there could be a restriction of blood flow through your fistula.

Unrestricted blood flow
Any restriction of blood flow can cause clotting. Here are some tips to help keep blood flowing without restriction:

  • Avoid tight clothing or jewelry that could put pressure on your access area
  • Do not carry bags, purses or any type of heavy item over your access area
  • Don't let anyone put a blood pressure cuff on your access arm — have your blood pressure taken from your non-access arm
  • Request that blood being drawn is taken from your non-access arm
  • Don't sleep with your access arm under your head or pillow
  • Check the pulse in your access daily

How do I find a dialysis center in my area?

You'll be spending a lot of time at your dialysis center, and will depend on the care team there to help keep you feeling your best. Naturally, you'll want to do a little homework before you decide on a center.

To find a dialysis center near you and find out how it ranks in terms of quality and care, you can go use the "Dialysis Center Comparison" tool provided by the Department of Health and Human Services. To access this tool, click here

For a quick listing of dialysis centers with no comparison information, click here.

If you are looking to change dialysis facilities because you are not happy with your current center, keep in mind you may also need to change doctors.

What is a vascular access for hemodialysis?

Your vascular access is a way to bring your blood out of your body so it can be cleaned by hemodialysis and returned to you. The best type of vascular access is created under your skin, using your own blood vessels. When they can be used, arteriovenous (AV) fistulas are the best choice as they can last for years and tend to have the fewest problems.

Fistula access for hemodialysis
An arteriovenous (AV) fistula surgically connects your artery and vein. Fistulas are the least likely to become infected or clotted, and can sometimes last for decades. They are the very best kind of access. When you first get a fistula, it will take a few months to mature. You can help the process by squeezing a rubber ball in the hand of your fistula arm.

To learn more about the program created by the Centers for Medicare & Medicaid Services (CMS) to promote the benefit and use of fistulas, visit the "Fistula First" website.

Graft access for hemodialysis
An arteriovenous (AV) graft uses a piece of artificial vein to connect your artery and vein. Grafts need "tune-ups" more often than fistulas, but with good care, a graft can last for a few years. A graft can be used in a few weeks.

Here are some ways to care for your fistula and graft

  • Keep your access arm clean, and watch for signs of infection such as tenderness, swelling, redness, fever or flu-like symptoms. If an infection is caught early, it can often be easily treated with antibiotics.
  • Avoid tight clothing or lying on top of your access arm while you sleep — these can slow the blood flow through your fistula or graft and raise the risk of clotting.
  • Need to have your blood pressure measured or blood drawn? Insist that the staff use your non-access arm. If you must have blood drawn from your access arm, the veins in your hand are the safest ones to use.
  • Feel the "thrill" or vibration of blood through your access several times a day. If the flow stops or even feels different, this could mean a blood clot. Call your dialysis care team right away. With quick action, many clots can be dissolved or removed.
  • Each day, use a stethoscope to listen to the "bruit" or whoosh-whoosh of blood through your access. If the bruit gets higher in pitch, like a teakettle, it could mean narrowing of the blood vessels. If the bruit stops, you may have a blood clot. Call your dialysis care team right away if you notice a change.
  • Always wash your access arm well before each dialysis treatment, as your care team teaches you.
  • Be sure the care team member who will put needles into your access has clean hands and fresh gloves.
  • Some dialysis centers — and some patients — have a "three strikes and you're out" rule for their access. If a care team member cannot place the needles in three tries, someone else takes a turn. If you have an access that is difficult to stick and you find someone who is very good at sticking it, you may want to ask the charge nurse for that care team member if she or he is available.
  • At each dialysis, the needle sites should be at least half inch away from the sites used the last time. Know where your next needle stick should be, or better yet, learn to put in your own needles. Good "sticks" can help keep your access working well.
  • Your dialysis team will teach you how to hold your needle sites to stop the bleeding after a treatment. Be sure to wear a glove when you do this.

Cleanliness

Cleanliness is one way someone on hemodialysis can keep their fistula uninfected. Keep an eye out for infections, which can often be detected when there is pain, tenderness, swelling or redness around the access area. If you notice fever, contact your health care professional. Your doctor may prescribe antibiotics for an infection, which should likely go away easily with early diagnosis.


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