I had known for a long time that I had PKD (polycystic kidney disease.) I had inherited it from my mother Millie (maiden name Acker).

My mother died in childbirth from polycycsic kidney disease - more specifically an hemorrhage in the brain from an aneurysm (one of the symptoms of PKD). She died an hour after I was born. I was alone.

My father was devasted by my mother's death and mourned silently the rest of his life. I recently read my mother's death certificate and realized that my parents had only been married for a year before my mother died. I have no siblings.

Symptoms of my Polycystic Kidney Disease did not start to appear until I was 48 years old. I began to notice that I woke up with a pain in my abdomen every morning. I thought that this was just a belly ache, but after awhile I realized that the pain was from my enlarged kidneys.

Since this is a genetic disease, I hope that my two daughters don't inherit this. To the left is a recent Christmas picture of my oldest daughter Monica and I. Monica is already dealing with enough from multiple disabilities not related to PKD.

My wife and I won't know for another few years or so if our daughters inherited this mutated gene. In the meantime, our family will try to keep our blood pressure as low as possible to slow the growth of any possible future cysts.

This year I volunteered for the first time for the national PKD walk fundraiser for research - PKCcure. in association with the PKD Foundation.

I am now an Occupational Therapy Assistant, a graduate from Manchester Community College. Here is my occupational therapy assistant COTA resume.

Polycystic Kidney Disease PKD

PKD affects more than 12.5 million individuals worldwide, making it the most common life-threatening genetic disease. There are more persons with PKD than the combined numbers of those with cystic fibrosis, Down's syndrome, hemophilia, muscular dystrophy, and sickle cell anemia."

The advances made in Polycystic Kidney Disease (PKD) research in the past few year have been spectacular and are laying the foundation for clinical trials of possible treatments in the near future.

The PKD advocates express their concern that research funding levels are inadequate and threaten the momentum generated by the promising research progress of the last year. They discussed the need for funding commensurate with the impact of the disease that afflicts approximately 600,000 Americans and costs the federal government $1.5 billion a year.

In addition, the advocates pointed out that PKD affects 20 times the number of people as cystic fibrosis, yet receives only one-tenth the federal funding. It also receives less funding than Lyme disease, a condition that is not fatal and affects 45 times fewer people.

ADPKD equally affects men and women, regardless of age, race, or ethnic origin. It typically expresses itself in adults when they are in the prime of life. ARPKD strikes children at birth and is often fatal.

In the 18th and 19th Centuries, PKD was often given the label of Bright's disease. This term encompassed any of several kidney diseases marked by high concentrations of protein in the urine.

Polycystic kidney disease is a disorder in which many clusters of cysts develop primarily within your kidneys. Cysts are noncancerous (benign), round sacs that contain water-like fluid. They vary in size from tiny sacs to sacs large enough to hold several quarts of fluid.

Having a benign kidney cyst is common. At least half the Americans older than age 50 have one or more kidney cysts. A benign, simple kidney cyst doesn't require treatment. And having one or more kidney cysts doesn't mean you have polycystic kidney disease.

Polycystic kidney disease isn't limited to your kidneys, although the kidneys usually are the most severely affected organs. The disease can cause cysts to develop in your liver, pancreas, membranes that surround your brain and central nervous system, and seminal vesicles. Other complications may occur as well.

The greatest risk for people with polycystic kidney disease is high blood pressure (hypertension) that develops as a result of their kidney disease. Complications from hypertension are the leading cause of death in people with this disease. Kidney failure also is common with polycystic kidney disease.

Polycystic kidney disease affects between one in 400 and one in 1,000 people born in the United States. About 600,000 people in the United States have polycystic kidney disease. Abnormal genes are the cause, and there's no way of preventing or reversing the development of kidney cysts in affected people. But the disease varies greatly in its severity, and some complications are preventable. Regular checkups can lead to treatments to reduce damage to your kidneys from complications such as high blood pressure.

Signs and symptoms of polycystic kidney disease may include:

High blood pressure
Back or side pain related to enlarged kidneys
Abdominal pain
Increase in the size of your abdomen
Blood in urine
Kidney stones
Kidney failure
Kidney infection

Abnormal genes cause polycystic kidney disease, and the genetic defects mean the disease runs in families. The disease has two types, caused by different genetic flaws:

Autosomal dominant polycystic kidney disease (ADPKD). Signs and symptoms of this form often develop between the ages of 30 and 40. In the past, this type was called adult polycystic kidney disease. The illness does manifest itself in children in a small number of cases. Only one parent needs to have the disease in order for it to pass along to the children. If one parent has ADPKD, each child has a 50 percent chance of getting the disease. This form accounts for about 90 percent of cases of polycystic kidney disease.

Autosomal recessive polycystic kidney disease (ARPKD). This form is far less common than ADPKD, occurring only in one in 10,000 people in the United States. The signs and symptoms often appear shortly after birth. Sometimes, symptoms don't appear until later in childhood or during adolescence. Both parents must have abnormal genes to pass on this form of the disease. If both parents carry the genes for this disorder, each child has a 25 percent chance of getting the disease. Research has identified at least three genes that may be responsible for ADPKD and one gene that may be responsible for ARPKD.

About one person in 10 with polycystic kidney disease has no family members with the disorder. In these cases, instead of inheriting a defective gene, the gene spontaneously mutates, causing polycystic kidney disease.

It's not uncommon for people to have polycystic kidney disease for years without developing signs or symptoms and without knowing they have the disease. If you exhibit some of the signs and symptoms of polycystic kidney disease, which include high blood pressure, an increase in the size of your abdomen, blood in your urine, back or side pain, or kidney stones, see your doctor to determine what might be causing them. If you have a first-degree relative — parent, sibling or child — with ADPKD, see your doctor to discuss the pros and cons of screening for this disorder.

Several diagnostic methods are available to detect the size and number of cysts as well as to evaluate the amount of healthy kidney tissue.

Ultrasound examination. This is the most common diagnostic method. A wand-like device called a transducer is placed on your body. It emits inaudible sound waves that are reflected back to the transducer — like sonar. A computer translates those reflected sound waves into a moving image of your kidneys.
Computerized tomography (CT) scan. As you lie on a movable table, you're guided into a big doughnut-shaped device that passes very thin X-ray beams through your body. Your doctor is able to see your kidneys in two-dimensional "slices."

Magnetic resonance imaging (MRI) scan. As you lie inside a large cylinder, magnetic fields and radio waves generate cross-sectional views of your kidneys.

Genetic testing. Gene linkage analysis involves special blood tests for you and for at least three family members who are known either to have or not to have polycystic kidney disease. Then, the results of your blood tests are compared with the results of the tests of your family members. Because this test is so expensive, it's often only used when one family member is considering donating a kidney to another family member.

High blood pressure is a common complication of ADPKD. As many as 70 percent of people with ADPKD develop high blood pressure. Untreated, high blood pressure can cause further damage to your kidneys and increase your risk of heart disease and stroke.

A serious complication of polycystic kidney disease is progressive loss of kidney function. About 50 percent of people with the disease will have kidney failure by age 60, and about 60 percent will have kidney failure by age 70.

Polycystic kidney disease causes your kidneys to gradually lose their ability to eliminate wastes from your blood and maintain your body's balance of fluids and chemicals. As the cysts enlarge, they produce pressure and promote scarring in the normal, unaffected areas of your kidneys. These effects promote high blood pressure and interfere with the ability of your kidneys to keep wastes from building to toxic levels, a condition called uremia.

Kidney failure and subsequent uremia can cause itching, nausea and loss of appetite. Left untreated, this toxic buildup of waste products and fluid can lead to congestion of your lungs, coma or even death.

The disease may also result in your kidneys producing less erythropoietin — a growth factor for red blood cells. Less erythropoietin results in decreased bone marrow production of red blood cells. Fewer red blood cells (anemia) mean you have less iron-rich hemoglobin to carry oxygen from your lungs through your bloodstream to the rest of your body.

As the disease worsens, end-stage kidney (renal) failure may result. When end-stage renal failure occurs, you'll need ongoing kidney dialysis or a transplant to prolong your life.

Most women — up to 80 percent — with polycystic kidney disease can have an uneventful pregnancy. Others may develop a life-threatening disorder called pre-eclampsia. Those most at risk are women who have high blood pressure before they become pregnant.

Other complications of ADPKD may include:

Growth of cysts in your liver. The likelihood of developing liver cysts for someone with ADPKD increases with age. About two-thirds of people with ADPKD will develop liver cysts at some point in their lifetime. While both men and women develop cysts, women often develop larger cysts and get them at an earlier age. Cyst growth appears to be aided by female hormones. They're more frequent in women who've been pregnant.

Development of an aneurysm in your brain. Localized enlargement of an artery in your brain can cause a hemorrhage if it ruptures. Aneurysms tend to run in families and are present in between 5 percent and 10 percent of people with ADPKD.

Heart valve abnormalities.

Hernias, and pouches or sacs in the wall of the colon (diverticulosis).

High blood pressure. Controlling high blood pressure may delay the progression of the disease and slow further kidney damage. Combining a low-sodium, low-fat diet that's moderate in protein and calorie content along with eliminating smoking, increasing exercise and reducing stress may help control high blood pressure. However, you usually also need medications to control it.

Pain. Chronic pain, usually located in your back or your side, is a common symptom of polycystic kidney disease. Often, the pain is mild and you can control it with over-the-counter medications containing acetaminophen. For some people, however, the pain is more severe and constant. In some cases, your doctor may recommend surgery to remove cysts if they're large enough to cause pressure and pain.

Bladder or kidney infections. Prompt treatment of infections with antibiotics is necessary to prevent kidney damage.

Blood in the urine. You'll need to drink lots of fluids as soon as blood in the urine is noted, in order to dilute the urine. Dilution may help prevent obstructive clots from forming in the urine. Bed rest also may help decrease the bleeding.

Complications of cysts. Rarely, when kidney cysts cause chronic, severe pain or obstruction of other organs or veins, you may need to undergo surgery to drain the cysts.

Kidney failure. If your kidneys lose their ability to remove wastes and extra fluids from your blood, you'll eventually either need dialysis or a kidney transplant.

Liver cysts. Nonsurgical management of liver cysts includes avoidance of hormone replacement therapy. Other options in rare cases include drainage of cysts if they're not too numerous, partial removal of the liver, or even liver transplantation.

Aneurysms. If you have ADPKD and a family history of ruptured intracranial aneurysms, your doctor may recommend regular screening for aneurysms. If an aneurysm is discovered, surgical clipping of the aneurysm to reduce the risk of bleeding may be an option, depending on its size. Nonsurgical treatment of small aneurysms may involve controlling high blood pressure and elevated plasma levels of lipids — fats and fat-like substances — and smoking cessation.

As is the case with other chronic illnesses, having polycystic kidney disease may make you feel overwhelmed or helpless. But you don't have to deal with your illness alone. The support of friends and family is important in dealing with a chronic illness. In addition, a counselor, a psychologist, a psychiatrist or a clergy member may be able to help.

You may also want to consider joining a support group. Although support groups aren't for everyone, they can provide helpful information about treatments and coping. And being with people who understand what you're going through may make you feel less alone. Ask your doctor about support groups in your community.

normal kidneys

polycystic kidneys are usually much larger than normal kidneys, and have cysts

My mother died in childbirth from polycystic kidney disease. More than anything, I wish I had a chance to know her.