ADPKD
Autosomal Dominant Polycystic Kidney Disease, ADPKD, causes fluid-filled cysts to grow on the kidneys. Over time, these cysts multiply and grow, causing kidney failure. Dialysis and transplantation are the only treatments for kidney failure. There is no treatment or cure for PKD.
The claims are ADPKD affects 1 in 500 newborns, children and adults regardless of sex, age, race or ethnic origin. It does not skip a generation. Parents with ADPKD have a 50 percent chance or greater of passing the disease on to each of their children. Society has done little to determine the real numbers of people affected in the U.S.A. or Worldwide.
Common symptoms of ADPKD include high blood pressure, pain in the back, side or stomach, blood in the urine, kidney stones, frequent urinary tract infections, a family history of kidney problems, heart problems (CHF) or strokes (CVA). Anyone experiencing one or more of these symptoms should see a doctor if you survive.
Frequently asked questions that I get.
What are the first, "signs" that you usually see with ADPKD?
Blood in your urine is the most common sign. The color of the blood is also important to take note of. If this happens, it is not the flu. Go to the doctor, even the emergency room. Blood in you urine could be something serious.
At what age does ADPKD usually start to interfere with your life?
ADPKD, usually shows signs on a regular basis in your mid-forties. Most people are busy with children, or their careers and don't know where to begin, little lone trying to understand what is happening to themselves.
At what age does a person with ADPKD on average go into renal failure?
53 years old is the average age adults with ADPKD go into renal failure. So, for many families they have ten years or so to get their affairs in order. This fact adds an extra element of surprise to those who suffer from ADPKD. Quality time becomes an issue. How much quality time they have and what are the best ways to spend it.
Alot of nephrologists feel that ADPKD'ers don't go into renal failure or are in need of a kidney until you are in your 60's. This is misleading, they add dialysis into the equation. When your hook up to a machine, six hours a day, every other day as you deteriorate, isn't the same quality of life that you had previous to dialysis. Dialysis was the only life sustaining option in the 20th. century. This is a new millennium, we should explore other options currently available.
What options or treatments are available for individuals with ADPKD?
Traditional thinking is none, keep the patient comfortable. Keeping the blood pressure under control. The two major blood chemical levels that are monitored or measured are the creatinine level and the blood urea nitrogen level (BUN) level. As these two levels rise, they are indicators of the decreasing ability of the kidneys to cleanse the body of waste products. Your doctor can get an idea how fast your renal function is deteriorating. One of the hopes is to try to make the original parts last for you, as long as possible. Hopefully reducing the chances for dialysis and/or transplantation.
Doctors use a urine test, the "creatinine clearance," to measure the level of kidney function. The patient saves urine in a special container for one full day. The waste products in the urine and in the blood are estimated by measuring the creatinine. By comparing the blood and urine level of this substance, the doctor has an accurate idea of how well the kidneys are working. This result is called the creatinine clearance. Usually, when the creatinine clearance falls to 10-12 cc/minute, the patient needs dialysis. Then the only other thing you need to be concerned with are the heart attacks and strokes that come along with all this.
Is ADPKD considered a contagious disease?
Yes
Is ADPKD also thought of as a sexually transmitted disease?
Yes, not in a usual manor. You can not receive it from your partner, it is passed on to the children you produce. Carriers could be the father or the mother, or both... This disease does not discriminate, it treats everyone equally. It does not skip generations. Most articles state there is a 50% chance of passing it on. What I have witnessed, it is alot higher than that. I have seen three generations where all the children and all the grandchildren show positive !
Why is it that no one hears about this disease?
The position currently taken is, there is no treatment and no cure. So don't worry yourself. When the drug companies have a drug to manage ADPKD the whole world will know and hear about PKD. Odds are this, "New Drug" to manage ADPKD, will also cost more than dialysis. Then at that point early detection will be important. Currently, N.I.H. is Identifying the families, building a data base. Check Item #24 on my research page.
Then when this, "New Drug" is available to the masses the pharmaceuticals will want to start treatment as early as possible. I have heard, 18 years of age. This opinion or model is short sided. Medical Science, has come a long way since the mid-eighties. Real soon in the next few years Tengion, and companies similar will be able to take genes from a host, grow a kidney from those genes, in a matter of weeks. Then transplant this new, neo-kidney back into the original host. Once again I encourage you to read our research page.
Organ transplantation is and has changed....
What do you feel is the number one issue about this disease, most are unaware of?
The discrimination is omnipresent. If you go to agencies that you believe are there to help you in times of need like Social Security, medical facilities, and such, and all the people who perform the intake have never heard of Polycystic Kidney Disease this creates a problem.
The Disability Determination Services (DDS), is the agency who determines if a person is qualified to receive SSI and SSDI for Social Security (SS), and if they are unaware of this disease or the effects of this disease and how it cripples you, it can be devastating.
PKD, is the perfect disease for the powers to be. No one has heard of it, so there is little support or understanding from the masses. If you try to be heard, you are the problem. The ones who have leverage over you can and will make life impossible, if you don't play along.
Example, over 25% of your total body can be kidney, Social Security doesn't care. If you choose not to go on dialysis, Social Security will not provide the benefits that you are entitled to. You are captive to the medical protocol. Most people just get tired of fighting, to be heard or understood. If no one cares, then no one cares. It seems once again that we are a resource for the professionals and financial institutions to profit or harvest from.
What test do you need to learn if you have PKD?
Ultrasound, is what is used for humans. If you have a cat with PKD, there is a DNA kit you can purchase through the mail for around $65 to tell you if your cat has PKD. The SAME genes are effected in both cats and people.
Someone asked me recently if PKD, was from drinking alcohol?
NO. PKD, is not something that people get stuck with due to life style choices. It is a genetic thing.
ARPKD
Autosomal Recessive Polycystic Kidney Disease, ARPKD, is a rare genetic disorder, occurring in approximately 1 in 20,000 newborns. It affects boys and girls equally and often causes significant mortality in the first month of life. If the child survives the newborn period, the chances of survival are good. For these children, approximately one-third will need dialysis or transplantation by the age of 10.
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