PKD - The Silent Battle
Polycystic kidney disease or PKD is a disease which causes cysts to form in the kidneys. The word Polycystic means "many fluid-filled sacs" or "cysts".
Your kidneys are the master chemists of your body. Normally, you have two kidneys, one on either side of your spine under the lower ribs. They are pink in colour and shaped like kidney beans. Each kidney is about the size of your clenched fist.
Polycystic kidneys become very large, have a bumpy surface and contain many cysts. Pressure from the expanding cysts slowly damages the normal kidney tissue, eventually causing kidney failure or "renal failure".
PKD seems to strike people all over the world regardless of race, sex, religion or social class. In Canada, about 28,000 people suffer from the illness.
PKD is an inherited disease. This means that it is passed from parents to children. Every person has 23 different pairs of chromosomes, one set coming from each parent. The chromosomes are messengers which carry information in the form of genes. If you inherit the gene for PKD then you will either have the disease or you will be a silent carrier (where you don't have the disease but you may pass on the gene). This will depend on the type of PKD gene passed on to you.
There are two types of this illness. Adult PKD, called autosomal dominant PKD, is the most common inherited disease of the kidneys. The second type a very rare type of PKD, called autosomal recessive PKD, which affects infants and young children. A child can have Infant PKD only when both parents are silent carriers of the gene; in this case, each child has a 25% chance of having the disease.
In Adult PKD the gene for the disease is dominant. This means that if you have the gene, then you will have the disease. If either your mother or father has autosomal dominant PKD, then you, your sisters and brothers each have a 50% chance of inheriting PKD.
If the gene for PKD is not passed on to you, then you will not inherit the disease, nor will you pass it on to your children.
Adult PKD progresses very slowly. Early in the disease there are often no symptoms at all. The only way to know if you are affected by PKD is to be tested for cysts in your kidneys. There are a number of other symptoms which you might watch for:
high blood pressure
recurrent bladder or kidney infections
severe and recurrent headache
blood in the urine
side, back, or stomach pain
water retention (edema)
kidney stones
People with PKD might also have cysts in the liver, pancreas, and other organs.
As well, about 15% to 40% have swellings in the walls of blood vessels in the brain (called aneurysms).
Kidney failure occurs when you are left with less than 10% of total kidney function. Only one in six people with PKD will develop kidney failure. Many are not affected at all until later in life. It seems that early treatment of symptoms of PKD can delay kidney failure.
If your kidneys fail, then you would need dialysis treatment (the cleaning of the blood either by a machine or in your abdomen), or a kidney transplant. Patients with PKD do well with these treatments.
The first method of diagnosis used is usually the ultrasound. This test uses sound waves which are sensitive enough to detect the presence of cysts. The ultrasound can show how many cysts are in the kidney and liver, and how big they are.
You might also be referred for a CT scan, a method which uses X-rays to detect very tiny cysts.
Another method of diagnosis is called gene linkage analysis. Blood tests from various family members can be used to detect, with a high degree of accuracy, who in the family carries the PKD gene.
If you wish to be tested for PKD, be sure to discuss with your doctor the benefits, such as family planning, and the risks, such as career options and insurance possibilities.
The decision to have children is a very personal one. If you or your partner have PKD, you may want to discuss the possibility of having a child with PKD. It is best to talk it over with your doctor or genetic counsellor so that you can make a well-informed decision.
Learn all you can about the disease.
Visit your doctor regularly.
Control high blood pressure.
Have urinary tract infections treated immediately.
Don't take any over-the-counter medication without first checking with your doctor.
If you have sudden, severe headaches, contact your doctor immediately.
Discuss family planning with your doctor or genetic counsellor.
Each year, thousands of Canadians - Ontarians get a second chance to live life to its fullest, thanks to the kindness of people who have given the gift of life and donated organs and tissue.
But many more are still waiting. All too often, lives are lost because suitable donors are not found in time.
Many people will spend months and, in some cases, years, waiting for a second chance to live, see or walk because the need for organs and tissue in Ontario continues to outweigh their availability.
It doesn't have to be this way. Complete a donor card and talk to your family about your decision to give life. One conversation can make all the difference for the future.
The Trillium Gift of Life Network is dedicated to planning, promoting, coordinating and supporting organ and tissue donation across Ontario and improving the system so that more lives can be saved. It was created in December 2000 by the Ontario Government's Trillium Gift of Life Network Act, legislation designed to significantly increase organ and tissue donation in Ontario.
What I am trying to do is spread awareness of this disease, because it has affected about 1/3 of my family including myself. We are all struggling with this illness and it's various side effects. Currently my Mother is in Renal Failure and is on Dialysis three times a week for 3 1/2 to 4 hours a session. She has also had one Aneurysm clipped and one they are watching. She has suffered two strokes, though thankfully she was spared. My Aunt suffered a major Aneurysm six years ago and now lives with us, as she is unable to work to support herself.
If you would like to make a contribution to our battle, please visit www.paypal.com or hit the link below and you can make a donation. You can use the email address canadianteebaz@yahoo.ca.
Thank you very much for your help and take care of yourselves.
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The Kidney Foundation of Canada is a national volunteer organization dedicated to improving the health and quality of life of people living with kidney disease.
Since 1964, the Foundation has sponsored fundraising campaigns which have contributed more than $44 million to the research of kidney-related diseases.
Patient Services include the provision of: information & referrals; "Living with Kidney Disease" patient manual; educational brochures; financial patient assistance programs; dialysis camps & vacations, and peer support programs.
By distributing organ donor cards and pamphlets nationwide the Foundation works to increase awareness of the need for kidneys for transplantation.
If you wish to receive more information, please contact me at:
canadianteebaz@yahoo.ca
or
The Kidney Foundation of Canada
National Office
300-5165 Sherbrooke Street West
Montréal, QC H4A 1T6
or A Kidney Foundation office near you.
All rights reserved. This material does not constitute medical advice and is intended for informational purposes only. Please consult a healthcare professional for specific treatment recommendations.
Paypal
Polycystic Kidney Foundation website
Free Webpages at Webspawner.com
Trillium Gift of Life
Send E-Mail to: canadianteebaz@yahoo.ca
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