I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on May 02, 2007, 08:20:29 AM
-
Family Ties: Living With Polycystic Kidney Disease
Originally published May 01, 2007
By Kathy Jenkins
News-Post
THURMONT — Tina Hensley of Thurmont has 7 percent kidney function. Twenty-six years ago she was experiencing high blood pressure, lower back pain and chronic urinary tract infections. A CT scan revealed enlarged kidneys with black bubble-like cysts on the outside. These cysts would grow and destroy kidney tissue. The diagnosis: polycystic kidney disease.
According to the National Kidney Foundation, polycystic kidney disease, or PKD, is a genetic or inherited disease which normally appears in adult life. PKD is the most common life-threatening genetic disease and it is estimated to affect between one in 400 and one in 1,000 individuals. It is found in all races and occurs equally in men and women.
Adult PKD is passed from parent to child by an autosomal-dominant type of inheritance. One copy of the abnormal gene is needed to cause the disease. Therefore, if one parent has the disease, each child has a 50-50 chance of getting the disease. The risk to every child is the same regardless of how many children develop the disease.
Hensley's grandfather, Ralph Roland Ritenour of Lewistown, died of a PKD-related heart attack. He passed PKD to Tina's father, Ralph Allen Ritenour, who died at age 39. His brother, James Ritenour, died from the disease in 2005. James was chief of the Lewistown Volunteer Fire Department for 15 years. The fire company held fundraisers to help fund a kidney transplant from a deceased donor. The surgery extended his--life for--five years.
Hensley's parents had four children. She and her brother, Ralph Lee Ritenour, inherited the disease. The other two siblings did not.--After receiving a kidney transplant from a deceased donor, her brother's life was extended for--four years. He--died at age 37.
Hensley is married with two daughters. She knew if she had children that each would have a 50 percent chance of inheriting the disease. Older daughter Erin Becker,--now 23 years old, had kidney reflux as a child. The condition has limited her kidney function, but she did not inherit PKD.
"We always knew it was in the family and that we would have a chance of having it," reflects--Hensley's 20-year-old-daughter Dawn Becker, who--did inherit--the disease from her mother.
Dawn was diagnosed two years ago. Currently a student at Virginia Tech, she finds that pain after she exerts herself is the worse symptom. Her blood pressure is maintained by diet. Activities that are suggested to be avoided are riding roller coasters, mowing, raking and vacuuming. A cyst may "pop," causing severe pain and blood in the urine. She is seen annually by her kidney specialist, Dr. William Johnson.
"We've always talked about PKD," she adds. "We didn't want to miss out on life's events."
Her mother agrees. Even though the pain can make her "tired and grumpy," Hensley continues to work as a legal assistant at a firm in Rockville. Her first career choice was landscaping, but the physical labor involved would have aggravated the pain of PKD. Every two weeks she visits her specialist, Dr. Stephen Hellman of Rockville.
Hensley maintains her blood pressure by medication, avoids eating red meat, and receives IV antibiotics at the hospital to keep the white cell count down. Recently she began receiving home care to change and care for the IV treatments.
"Rest is important and painkillers help," she says. "I'm trying to live life."
At--this point, there is no cure for PKD. As kidney function decreases, the only treatment options are dialysis or organ transplant. Hensley will need a surgical procedure to insert a fistula, or artificial vein, for dialysis. On March 23 she entered the National Organ Transplant System.
Hensley needed to be evaluated by the University of Maryland Medical Center, Division of Transplantation, to be eligible for a kidney transplant. She underwent blood testing to prove that she has PKD and to prove that she is well enough to survive the procedure. Once accepted, there is usually an 18- to 22-month wait for a suitable donor.
"I need to lose 15 more pounds," she smiles.
Family donors are considered but her daughter, Erin is ineligible due to her own limited kidney function. "I'm really disappointed that I can't be a donor for Mom or Dawn," she says.
Blood type is also an important consideration. Hensley's donor would need to be O positive, have no disease and not be overweight. At this time, a neighbor has volunteered to be tested as a potential living donor.
The best case scenario for Hensley would be the removal of both her kidneys and transplanting a healthy one from a living donor.--According to Hensley, kidney transplants from a deceased donor offer an extension of life for nine years. Kidney transplants from a living donor can extend life for 25 years.
"I don't think people realize that you can donate a kidney before you die," she says.
--Research continues for a cure for polycystic kidney disease. Studies suggest that some treatments may slow the rate of kidney disease in PKD, but further research is needed before these treatments can be used in patients. Other studies are improving the understanding of the genetic basis of PKD.
Until a cure is found, "healthy people have the potential to give life," concludes Dawn.
URL http://www.fredericknewspost.com/sections/art_life/display.htm?StoryID=59585
------------------------
Family Ties: Living With Polycystic Kidney Disease
Photo by Sam Yu
Tina Hensley of Thurmont and her daughter, Dawn Becker, both have polycystic kidney disease. Hensley may need a kidney transplant in the near future.
“I don’t think people realize that you can donate a kidney before you die.” Tina Hensley Polycystic kidney disease patient