High blood pressure (BP);
Pain in the back, side, or stomach;
Blood in the urine;
Kidney stones;
Frequent urinary tract infections;
A family history of kidney problems; and
Heart problems or strokes.
Anyone experiencing one or more of these symptoms should see a doctor.
More than 60% of people with PKD will experience kidney failure and be forced to depend on dialysis or a transplant to live. However, there are many ways PKD patients can fight their disease.
Control Your Blood Pressure
High BP is common, affecting more than half of people with PKD. It can also be the earliest sign of disease. The growth of kidney cysts causes the release of hormones from the kidney that raises BP.
Diet and lifestyle changes: A low-salt diet, losing excess weight, stopping smoking, regular exercise, and cutting down on alcohol to one drink per day for women and two drinks daily for men are very important in managing BP.
Managing with medications: Sometimes diet and lifestyle changes are not enough, and BP medicines are required. Often, several different medicines are needed at the same time for good BP control.
Aiming for a BP goal: Guidelines suggest a BP less than 130/80 for all people with kidney disease, including those with PKD. A lower target (less than 120/80) may be better for people with protein in their urine and to prevent heart disease in PKD patients. Studies are ongoing to see which BP medicines are best in slowing down progression of PKD. The HALT PKD study is described at www.pkd.wustl.edu/pkd-tn/.
ACE Inhibitors and ARBs
Experimental and clinical evidence suggest that certain medicines, such as angiotensin converting enzyme (ACE) inhibitors and angiotensin II receptor blockers (ARBs) provide more benefit in slowing kidney disease than do others. Although these medicines are commonly used for PKD, other medicines such as diuretics and calcium channel blockers are also appropriate to control BP.
A Note of Caution: Women who are trying to get pregnant or who are pregnant should stop using ACE inhibitors and ARBs and discuss this with their doctor, as certain medicines can be harmful to the baby.
A Normal Pregnancy?
Women with PKD can have a normal pregnancy and a healthy baby. It is important to tell your doctor if you are planning a baby or if you have become pregnant. Medicines may need to be changed, and BP and kidney function need to be closely monitored.
It should be noted that PKD is a hereditary disease and can be passed on to children. A genetic counselor may be helpful in discussing this issue.
Dialysis and Transplantation
When kidneys are unable to function, dialysis provides a way to help clean the blood of waste and remove excess water from the body. Hemodialysis and peritoneal dialysis are different types of dialysis. A nephrologist can help determine which type may be best suited for each individual with PKD.
A healthy kidney can be donated to someone with kidney failure due to PKD. Since most people have two kidneys, a living person can safely donate one of their kidneys, or one can be given from a deceased donor. There are issues related to kidney transplantation that need to be first discussed with a kidney transplant team, but, if possible, transplantation is considered the best way to replace kidney function.
Realizing the PKD Foundation Vision
PKD patients interested in joining others to fight the disease may be interested in joining the PKD Foundation and supporting its vision that "no one suffers the full effects of PKD."
The PKD Foundation hopes to realize its vision through funding vital research. In 2005, it devoted $4.3 million to PKD research and medical programs. Another $1.8 million was directed to public awareness and patient education.
Overall, the PKD Foundation invests at least 81%, or 81 cents of every dollar, in mission-related programs. This is a point of pride for the thousands of PKD Foundation supporters across the country.
Other Battlefronts
In addition to funding research of its own, the PKD Foundation works with the U.S. Congress, the National Institutes of Health (NIH), and other federal agencies to fight for increased federal funding of PKD research. The PKD Foundation also provides a forum for patients, family, and friends through more than 65 volunteer-led chapters across the country and the world.
One of the PKD Foundation's largest events is the annual Walk for PKD, held each year on the third weekend in September. In 2006, the Walk for PKD, involving more than 20,000 volunteers nationwide, raised more than $2.2 million for vital PKD research.
The National Convention
The PKD Foundation's other signature event is the National Convention on PKD, the only conference in the world for PKD patients and the medical professionals who serve them. Hundreds of PKD patients and family members from across the U.S. as well as the United Kingdom and France attended the 2006 event in Washington, DC. There, they learned about everything from dialysis and transplantation options to nutrition and pain management techniques.
The 2007 National Convention on PKD is planned for June 22-24 at Disney's Contemporary Resort in Orlando, Fla.
Conclusion
The PKD Foundation offers its members a quarterly magazine, PKD Progress, as well as printed and online books, PKD information in 16 languages, informational brochures, packets, and fact sheets.
PKD Foundation supporters are also encouraged to sign up for a free, monthly electronic e-newsletter through the PKD Foundation website (see below). The website is updated regularly and offers a comprehensive and engaging overview of medical and lifestyle issues facing the PKD community.
For more information about PKD or the PKD Foundation, visit www.pkdcure.org or call (800) PKD-CURE.
About the Authors
Ronald D. Perrone, MD, is Chair of the PKD Foundation's Scientific Advisory Committee as well as Associate Chief, Division of Nephrology, and Medical Director of Kidney Transplantation at the Tufts-New England Medical Center in Boston, MA. He also serves as Professor of Medicine at the Tufts University School of Medicine.
Ahsan Alam, MD is a Research Fellow in the Division of Nephrology at the Tufts-New England Medical Center in Boston, MA.
Last Updated February 2007