Living with PKD

PKD patients still have a life to live – despite their diagnosis. Keeping the quality of life high is a top priority. This section deals with issues such as insurance, exercise, nutrition, family, work and caregiving to help keep you healthy and in a positive state of mind.


Health Insurance and Medicare

The PKD Foundation strives to provide our constituents with information to help them make well-informed choices about managing their disease and living with PKD. We've developed a list of the most common questions and concerns regarding private health insurance and Medicare.

View an updated list of frequently asked questions regarding the Genetic Information Non-Discrimination Act (GINA.

For Caregivers

Below are several resources designed specifically for those taking care of a loved one with PKD:

Webinar: Understanding Loss and Managing Grief
Article: Taking Care of Ourselves: Self-care for the Provider
Article: Caregiver Stress and PKD

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: Pre-Implantation Genetic Diagnosis 
Quick Notes on PKD: Preventing Dehydration
Quick Notes on PKD: Pain Management in PKD
Quick Notes on PKD: Kidney Nutrition Essentials NEW!
Quick Notes on PKD: Pregnancy and PKD


Common Nutrition 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.

What do I need to know about nutrition?

Dietary strategies play an important role in alleviating the symptoms of renal failure or "uremia" and may, in fact, slow the progression toward renal failure as well. In light of this information, it is important to understand how nutrients play a role in maintaining a healthy "internal milieu" in a patient with kidney disease.

There are six general classes of nutrients that are essential components of a healthy diet, whether or not one is nearing renal failure: Proteins, Fats, Minerals, Carbohydrates, Vitamins, Water.

These nutrients are needed by all people, but for those on renal diets, the requirements may need to be adjusted. It is important, then, to learn how specific nutrients interact with kidneys, cysts, blood pressure, etc., and then learn how to make the necessary adjustments for an individual situation.

Some other recommendations which play a role in a healthy diet/lifestyle include:

  • Reduce stress in your life: Stress causes cysts to grow faster by elevating adrenaline.
  • Avoid inflammation: Anything that causes inflammation in the kidney can accelerate the growth of cysts in PKD.
  • Eat a (mostly) vegetarian diet high in antioxidants: Diets based on plant proteins help lower blood pressure and may help slow the growth of kidney cysts. Animal studies have demonstrated that a low protein diet helps slow the progression of PKD.
  • Try Soybeans: Studies in lab animals show that soy protein slows the progression of PKD.
  • Choose low sodium foods and condiments. Try to eat less than 3000 milli-grams of sodium per day. Low sodium diets help reduce blood pressure and in lab animals, helps slow the progression of PKD.
  • Watch the caffeine. Caffeine may hasten the progression of PKD by elevating blood pressure.
  • Load up on potassium rich foods: High potassium diets help slow the decline in kidney function (Glomular filtration rate, GFR) in rats.
  • Get your Omega-3's: Studies with rats show that ingestion of omega 3 fatty acids helps reduce inflammation and slows the progression of PKD.
  • Eat high fiber carbohydrates: Recent studies have found that people with PKD and other kidney diseases may be mildly or acutely insulin resistant. High insulin levels are linked with heart disease and possibly faster rates of PKD progression.

Although animal studies clearly show a benefit, more human research needs to be done on most of the recommendations above before we know definitively they can work to help slow the progression of PKD. Until then, you can be certain that all of the recommendations are safe and are dietary and lifestyle factors that can improve anyone's health.

Which vitamins and herbs are safe and which ones aren't?

The type and amount of vitamins and herb intake vary from person to person. The vast number of of vitamins and herbs also make it impossible to list every one and their potential effect on the PKD patient. There is general information about several vitamin types below. However, when making a decision to start or stop taking any vitamin or herb, it is best to consult your doctor.
Vitamins are an important source of energy and 13 have been established in essential dietary constituents for humans. Essential, in this setting, means that these compounds must be in the diet because the human body cannot manufacture them. These organic compounds are necessary for normal growth and play specific roles in maintaining health. For example, retinol (vitamin A) is required not only for growth and reproduction, but also vision. Some vitamins, such as C, A and E, will accumulate in patients with diminished or absent renal function.

Vitamin C intake should not exceed 150-200 mg/day in patients with renal insufficiency. Excess intake results in accumulation of ascorbic acid metabolites, such as oxalate, and can predispose patients to deposition of calcium oxalate complexes in vessels and tissues.

Vitamin A also accumulates in patients with renal dysfunction because the kidney is largely responsible for its catabolism (the process where an organism reconverts living material into simpler compounds). S well, binding proteins for vitamin A increase in renal failure, causing vitamin A to stay in the body for increasing periods of time. Excess vitamin A can lead to decreased blood counts and abnormalities in lipid and calcium metabolism. 

Water-soluble vitamins are lost during the process of both hemodialysis and peritoneal dialysis and should be replaced. Folic acid and the B vitamins are two of these type of vitamins. It is important to take these supplements after hemodialysis so that dialytic losses are minimized. The kidney is responsible for the synthesis of 1, 25 vitamin D 3 (cholecalciferol), which is required to help absorb dietary calcium from the gastrointestinal tract and reduce parathyroid hormone levels. When kidneys fail, 1, 25 vitamin D3 levels decrease to less than normal levels. Impaired synthesis of cholecalciferol can contribute to elevated parathyroid hormone levels found in patients with renal failure. Parathyroid hormone contributes to a large extent to the bone disease seen in patients with ESRD.

How much water should I drink?

Adequate daily fluid intake is a requirement for all patients and particularly patients with ADPKD. Very early in the course of the disease, ADPKD patients lose the ability to concentrate their urine. This means that the kidneys in patients with ADPKD cannot hold on to or reabsorb water as well as other individuals. This defect is mild; nonetheless, if ADPKD patients do not have access to liquids, particularly during heavy exercise of extreme heat, significant dehydration can occur. 
The amount of fluid allowed in the diet of someone receiving dialysis depends on the amount of urine made and the type and frequency of dialysis employed. If one no longer urinates, then fluid intake is usually limited to one liter each day. The amount of fluid intake that is safe should be discussed with your nephrologist and your dialysis dietitian. 

Are there different dietary guidelines depending on the stage of kidney disease?

Yes. As kidney function decreases, adjustments need to be made to the diet to ensure the appropriate amounts of the most important nutrients are part of an individual's diet. Those recommendations are based on the results of lab tests which can most accurately identify what is and isn't being processed well. The nutrition requirements can then be based on those results. The most effective way to ensure the proper diet is being followed is to have accurate lab results and work with a renal dietitian to tailor a diet for your specific needs.

If I lose weight, will that help my kidneys?

Maintaining a healthy weight is important for many reasons, including protection of kidney function. Excess body weight can increase blood pressure and may lead to hormonal changes (hyperinsulinemia) that could possibly accelerate the progression of PKD. However, losing too much weigh or not using a healthful manner in doing so can cause other, possibly unintended complications. Before you take on any weight loss program you should consult your doctor. 

What's an ideal weight or BMI for a PKD patient?

Ideal Body Weight in general is figured in the following manner:

  • Women - First 5 feet = 100#; Every inch above 5 feet, add 5 pounds
  • Men - First 5 feet = 106#; Every inch above 5 feet, add 6 pounds 

For PKD patients, there is no set formula for determining IBW. This is partially due to the varying rate at which kidneys increase in size and weight and the effect of other complications PKD causes. It is best to work with your doctor to determine a weight appropriate for you which takes into account all of the issues you are dealing with.

What are the best exercises for PKD patients?

Good exercises for people with PKD include sports where impact is minimized. These include swimming, tennis, rowing, golf, biking and, to a lesser extent, jogging or running. Clearly one's desire for a certain sport needs to be considered when recommendations about choosing a sport are made.

Are sports dangerous to my kidneys?

In general, most sports do not affect kidney function. Specifically to ADPKD, there are some issues that need to be addressed with regard to the type of exercise regimen chosen. Given the unique nature of ADPKD, where kidneys are enlarged and cysts can easily rupture, there are some simple precautions to take. Contact sports where the kidneys may be traumatized (flank or lower-back impact) should either be avoided or protective pads should be worn. Examples of these types of sports include football, rugby, basketball, hockey and particularly boxing or kickboxing. Horseback riding and cross-country biking are other sports where repetitive impact has resulted in hematuria or blood in the urine, in individuals with ADPKD.

Can I drink beer or wine?

For the most part, moderate alcohol intake has shown some benefits in a healthy population. Red wine may even have cardio protective effects. While there is no data showing that moderate alcohol intake accelerates renal disease in PKD, you should consider that alcohol:

  • Has empty calories;
  • Can exacerbate lipid problems;
  • Can increase the chance of developing high blood pressure;
  • Can make blood pressure more difficult to control;
  • Can cause liver damage in cases of heavy consumption;
  • Can interact with your prescription medications

For those with ADPKD who are otherwise healthy, moderate alcohol intake is okay, but please limit to two drinks per day for men and one drink per day for women. 

One drink equals: 12 ounces of beer, 5 ounces of wine or 1 ounce of whiskey

Common Family & Lifestyle Questions

Can I still work with PKD? Do I need to tell my employer I've been diagnosed?

The ability to work can vary greatly between individuals. Much of it depends on what type of work a person does and how far their PKD has advanced. For example, individuals who have jobs which require moderate to strenuous physical work may find it more difficult to perform their tasks as their PKD advances. However, even those who have positions which require less or little physical activity may also experience challenges performing their job based on how their body is reacting to PKD. Much of it comes down to your ability to function affectively in your position while dealing with the changes occurring in your body.

Your choice to disclose to your employer that you have PKD could have an impact on your work. In some instances, it may help provide more support. In others, it could unfairly affect your career opportunities. The legal requirements in relation to disclosure vary. You should check with your state's Department of Labor to learn more about the situation in your area.

How does PKD affect pregnancy?

If you have ADPKD, the thought of getting pregnant can seem scary. Generally, women with ADPKD who have normal blood pressure and normal kidney function have uneventful pregnancies and deliver healthy babies! However, it's important to be educated on all the possible risks associated with PKD and pregnancy.

Hypertension can lead to fetal and maternal complications. If you have high blood pressure prior to becoming pregnant, you are at risk of further blood pressure elevations while pregnant. Some women with ADPKD who don't have high blood pressure prior will develop hypertension during their pregnancy and are more likely to have continued elevations in their blood pressure after delivery. Roughly 16 percent of women with ADPKD develop new onset hypertension during pregnancy.

Pre-eclampsia. This occurs when the placenta is prevented from getting enough blood. When this happens, the baby gets less air and food, which can cause low birth weight, premature birth and other problems for the baby. Increase in blood pressure, as well as protein in the urine could indicate this serious complication. 11 percent of women with ADPKD develop pre-eclampsia; however, most women with this condition still deliver healthy babies.

Liver cysts. While pregnancy does not seem to affect the growth of cysts in the kidneys, but it may be correlated with liver cysts. However, there's no proven effect of renal volume.

Mild long-term loss of kidney function. There appears to be a mild long-term loss of kidney function in women who have hypertension and have had four or more pregnancies, compared to ADPKD women with hypertension who have fewer than four pregnancies.

Passing it to your child.When beginning a family, it's important for both parents to understand that there's a 50 percent chance that the baby will inherit PKD. This is a personal decision. However, it is now possible to determine whether the fetus has PKD through Pre-implantation Genetic Diagnosis (PGD).

What is Pre-implantation Genetic Diagnosis or PGD?

Pre-implantation genetic diagnosis is a procedure that allows for screening of embryos before implantation within the womb.

This procedure requires the use of in vitro fertilization (IVF) techniques and involves:

  • Harvesting oocytes or eggs from the mother.
  • Adding sperm from the father and monitoring for fertilization to occur.
  • Extracting a single cell from the developing embryo.
  • Testing the single cell using a genetic test called mutation analysis for the presence or absence of the gene causing ADPKD in one of the parents.
  • Selecting the appropriate embryos for implantation into the mother's womb.
  • Monitoring for implantation and a successful pregnancy.

For this procedure to be possible the following conditions must be met:

  • The genetic defect that causes ADPKD must be known. With current testing techniques a mutation can be identified about 90 percent of the time. Sometimes, (about 30 percent of the time), the mutation that is found cannot be definitely determined as the cause of the disease in the affected parent.
  • Ideally the ADPKD parent-to-be should have several affected family members in his or her family so that a genetic test called linkage analysis can be established if the mutation analysis is not definitive. Linkage analysis can then be performed on a single cell from the embryo. In some families the linkage analysis will not be complete (or fully informative), resulting in a small chance of an incorrect diagnosis.

Key Points:

  • This procedure requires a great deal of technical expertise and luck. In the first published report of this technique 5 IVF cycles in 3 couples resulted in 2 births (both healthy children).
  • This technique may not be possible in your family because of problems with identifying the genetic mutation causing ADPKD or because the linkage analysis could not be established.
  • This is a very costly procedure, and may not be easily available in your area.

How does PKD affect male fertility?

As a group, men with ADPKD do not experience a decrease in fertility. However, ADPKD can be associated with cysts in the mail reproductive tract. These seminal vesicle cysts and epididymal cysts can cause infertility. Defects in sperm function have also been associated with ADPKD. Men with ADPKD concerned about fertility issues should consult a urologist.

Can I take anything to manage my pain?

Every individual acts differently, and therefore, pain could be experienced differently from person to person. Physicians must acknowledge that the patient has pain and attempt to understand the cause for it. Management of pain must be done in a stepwise sequence, first employing methods that are non-invasive and do not require medication. Such techniques as ice massage, heating pads, whirlpool baths, use of the Alexander Technique and psychobehavioral modification can all be used. It is often difficult to cure chronic pain, but the goal is to reduce the frequency and severity of pain so as not to interfere with one's lifestyle. Expectations of a total cure of pain usually result in disappointment because a complete cure of pain is extremely difficult.

Once all the non-medication approaches have been tried, then a stepwise sequence of medications can be used. Larger-than-usual doses of Tylenol can be used effectively. Other drugs can be added on top of this, but at no time should any patient take any over-the-counter medication, e.g., Motrin, Advil, Celebrex, Vioxx, etc., without talking to his or her physician. While this class of non-steroidal drugs can be effective in relieving pain, all drugs in this category carry the risk of producing kidney problems (kidney failure). There are other non-narcotic drugs that can be added in combination to these medications to achieve pain relief.

After all else fails, then low-dose narcotics can be used sparingly, but always with the expectation that these drugs would be limited in use for any prolonged period of time.

If the above drugs do not produce relief of pain, then more invasive techniques can be tried, such as transcutaneous electrical nerve stimulation (TENS), acupuncture, spinal cord stimulation (neuromodulation) and injection of narcotic agents directly into the spinal column.

The very last step is a surgical approach. In the case of kidneys, one can remove nerve fibers from around the kidney or the entire kidney, in cases of intractable pain. With enlarging liver cysts, there can be certain surgical procedures that decompress the cysts to produce pain relief.

Pain is a continuing issue in the patient with PKD. The most important thing is not to give up hope, but to pursue a detailed evaluation and then a stepwise approach to the management of pain. The patient should not accept narcotics as the first line of treatment. The goal is to empower patients to be active participants in their own care.

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©2016, PKD Foundation ·The PKD Foundation is a 501 (c)(3), 509 (a)(1) public charity.

©2016, PKD Foundation ·The PKD Foundation is a 501 (c)(3), 509 (a)(1) public charity.