Sunday, June 30, 2013

Find A Cure for PKD

 From NeighborNewspapers.com, Atlanta, Georgia
Cocktails for a Cure to raise funds for kidney disease

In a news release, the Atlanta chapter of the PKD Foundation announced it will host its second Cocktails for a Cure event Saturday from 7 to 10 p.m. at Tongue & Groove in Lindbergh City Center in Buckhead

Participants will be part of an evening to help raise money to find a cure for polycystic kidney disease, which is one of the most common, life-threatening genetic diseases affecting thousands in the U.S. and millions worldwide. The event will include music, catering by Chef Drew Ihrig at Endive, a silent auction and an opportunity to win a raffle prize.

“We are thrilled to host the [fundraiser] again this year,” said Marlene Stewart, PKD Atlanta chapter coordinator. “We invite the metro Atlanta community to help support this important cause by purchasing a ticket to attend or by making a monetary donation online, which will help fund vital research to find a treatment and cure for polycystic kidney disease.”

Tickets purchased online are $25 for single admission (one drink ticket) or $40 per couple (two drink tickets) and $30 for single admission (one drink ticket) or $45 per couple (two drink tickets) the night of the event.


Save A Life

From WCVB.com, the Boston Channel
New Hampshire woman makes public plea for her life
A Londonderry woman is hoping someone will be able to help her live a longer life.

Rosemarie Meuse has polycystic kidney disease. Over time, her kidney function is failing.

Her husband planned to donate one of his kidneys, but he died suddenly days before going to the hospital for a series of tests to see if he was a match.

Now Meuse, grieving the loss of her husband, hopes a stranger will come to the rescue.

"He was the love of my life and he was very selfless and kind," Meuse said of her late husband Philip, who went into cardiac arrest and passed away in March. [Read more]

How to help

To be a living donor, you can be a man or woman in general good health.

For more information on how you may be able to help, contact the following person:

Kristen Pelletier, RN
Living Donor Transplant Coordinator
Brigham and Women's Hospital
617-732-8683


From BCRNews, Bureau County Republican, Illinois
ANNAWAN — Like many other girls, 5-year-old Katelyn DeRycke loves to play outside, to swing on her swingset, to go fishing and swim. She loves playing with her Barbie dolls and with her 8-year-old sister Kyla and the family puppy. She likes playing with the IPAD.


But unlike most other little girls, Katelyn has some special medical challenges. As a newborn, Katelyn was diagnosed with Autosomal Recessive Polycystic Kidney Disease, a disease which claimed the life of her brother Noah in September 2003 when Noah was just 5 hours old....



Living With PKD

From PKDCure.org, The PKD Foundation

Voices of PKD, Stories: 

A Curvy Road to Diagnosis

LeeAnn Hujanen went through a dramatic turn of events that led to her PKD diagnosis on April 11, 2013. Adopted as a child, LeeAnn was unsure of her biological medical history, and didn't know PKD ran in her biological family. In 1999, while she was pregnant with her oldest daughter, the ultrasound tech noticed spots on her kidney. Her obstetrician said not to worry about it, and that they would keep an eye on it. So LeeAnn put the kidney spots out of her mind. [Read LeeAnn's story and many more]


From PKD Foundation, YouTube.com (note: these presentations are each about 45 minutes or longer)


From KidneyServiceChina.com
Exercises and Polycystic Kidney Disease (PKD)
Recommended types of exercises for people with PKD

1. Running, walking, swimming, biking, golfing and rowing are recommended to help you stay as healthy as possible.

2. Mind-body workouts including Tai Chi, yoga, and stretching are also beneficial. These types of physical activities can help relieve stress and control blood pressure due largely to their emphasis on concentrated breathing and relaxation. Add 2-3 sessions of mind-body workouts to your fitness routine.

Types of exercises that should be avoided

a. Avoid contact sports like football, basketball, as a blow to the enlarged kidneys may lead to further impairment, including burst or rupture of cysts.

b. Repetitive impacts sports like cross-country biking and horseshoe riding are suggested to avoided.

Cautions

Always stay well hydrated and drink lots of water while exercising, as PKD have trouble retaining water. Drinks that contain caffeine should be avoided, because they may increase the size of kidney cysts. Avoid high salt content drinks


From FuNeng Kidney Disease Hospital

What causes Polycystic Kidney Disease in Children?

What are the causes of Polycystic Kidney Disease in Children? Polycystic Kidney Disease in Children is a genetic disease, which can do harm to the children. Therefore, if you want to treat your child’s kidney disease, you should know what causes of Polycystic Kidney Disease in Children.
1. Gene deletion: Polycystic kidney disease in children is autosomal recessive inheritance, both parents have a genetic changes to make their children suffer from this disease, the morbidity is 25%.
2. Pathogenesis: Renal cyst is derived in renal epithelial structure, primary in renal tubule and pao capsule. All renal cysts have certain common structural components, including the cortex, the intumescent the cyst containing glomerular filtrate.
(1) ADPKD: more than 95% of polycystic kidney disease in children is caused by abnormal genes on the short arm of chromosome 16. Besides, infection and poisoning effect on tubular, stimulate the cyst genes changed the tubular cell metabolism, which directly cause epithelial cell necrosis and obstruction also promoting cell proliferation to make the cyst formation.
(2) ARPKD: The children’s parents don’t suffer from this disease, but they all carry the disease gene to make the children disease. It is a rare in polycystic kidney disease.


From GoBookee.net, Free eBooks download
Posted by at No comments:

Sunday, June 23, 2013

PKD Awareness Day, September 2013
From Congressional Record, 113th Congress, Library of Congress
SENATE RESOLUTION 172--DESIGNATING THE FIRST WEDNESDAY IN SEPTEMBER 2013 AS ``NATIONAL POLYCYSTIC KIDNEY DISEASE AWARENESS DAY'' AND RAISING AWARENESS AND UNDERSTANDING OF POLYCYSTIC KIDNEY DISEASE
Life with PKD

 From PKDBattle.blogspot.com
Principles of Daily Life for PKD Patients
Ⅰ. Life care:

Firstly, patients should improve their both mental and physical rest. For example, Nephrotic Hypertension patients should check blood pressure regularly and adjust their bed rest time according to their blood pressure change. [Read more...]


From DailyStrength.org


From PKDWillNotBeatMe, a blog by Valen Keefer
“I think it actually takes a lot of guts for us to come to terms with this that we are not super heroines and it is not about limitations, but preservation to what we have here and now and going into the future.”

This powerful statement came from my dear friend and two-time kidney transplant recipient, Mary Wu. This really spoke to me. I am learning a lot with age and through my health issues this year. Instead of focusing on things that others can do that may not be a practical life path for myself, I am focusing on the beautiful things that I can do and the opportunities that surround me. While these opportunities might be a lot simpler than some folks, they bring me great joy. I think that is what we are all striving for in life: happiness. [Read more]


From KMTV, Omaha, Nebraska

PKD (Polycystic Kidney Disease) Walk for the cure

Join us for a great time celebrating our fundraising efforts throughout the year. We will have music and activities featuring the Penny Kids Dash starting at 8 am. There will be a small raffle, including a chance to win a pair of Husker Tickets! If you wish to join please visit walkforpkd.org and register today!

Occurs once: Oct 12, 2013 (8:00 AM to 12:00 PM)
Contact Name: Jennifer Russell
Contact Email: nebraskawalk@pkd.org
Contact Phone: 402-714-3036
Location:  Walnut Creek Recreational Area
370 and 96th 9902 Schram Rd, Papillion, NE 68046


From KidneyServiceChina.com
Is Seafood Diet Ok for Polycystic Kidney Disease
Polycystic Kidney Disease, or PKD, refers to a condition that fluid-filled cysts invade the kidneys. These cysts wreak havoc on the kidneys, which effect the rest of the body. Common symptoms of this disorder include pain especially in the lower abdomen or back, blood during urination, etc. A healthy diet can help slow down the progression of kidney damage and guard against potential complications. Is seafood diet Ok for PKD patients?

Actually, seafoods should be limited for people with PKD, as they are a rich source of protein. In generally, low protein diet is suggested in case of polycystic kidneys. Here is the reason:

When protein is metabolized by the liver, it leaves a waste product called urea. Normally, urea is expelled by kidneys, in PKD, the kidney function is damaged and urea starts building up which is harmful to the body. A low protein diet will put less strain on the diseased kidneys.


From KUMC News, University of Kansas Medical Center

Vitamin B3 holds promise for treating polycystic kidney disease, research suggests

Despite decades of research, treatments for polycystic kidney disease remain elusive. Now a new study by KU Medical Center researchers suggests that one mechanism for controlling the ravages of the disease might be found in vitamin B3.

Polycystic kidney disease is one of the most common life-threatening genetic diseases, affecting 600,000 Americans and 12.5 million people worldwide. People who inherit PKD develop kidney cysts that grow and multiply slowly over time — patients in their 20s might have few symptoms, but by the time they are into their 40s or 50s, normally fist-sized kidneys containing these fluid-filled sacs can grow to the size of a football, causing pain and destroying kidney function. With a research program dating back to the 1950s, KU Medical Center scientists are internationally recognized experts on the disease — and acutely aware that there is still no cure.

Recently, however, Xiaogang Li, Ph.D., an associate professor of Nephrology and Hypertension and a member of the KU Kidney Institute, found that vitamin B3 helped naturally inhibited the activity of a protein called Sirt1 that influences the formation and growth of cysts. Li and colleagues were able to show that vitamin B3 slowed the creation of cysts and restored kidney function in mice with PKD. The results were published in the June 17, 2013 Journal of Clinical Investigation.  [Read more]


From KidneyFailureWeb.com
From KidneyFailureWeb.com


From Genetics Home Reference, National Institutes of Health
Medullary cystic kidney disease type 1
Medullary cystic kidney disease type 1 (MCKD1) is an inherited condition that affects the kidneys. It leads to scarring (fibrosis) and impaired function of the kidneys, usually beginning in adulthood. The kidneys filter fluid and waste products from the body. They also reabsorb needed nutrients and release them back into the blood. As MCKD1 progresses, the kidneys are less able to function, resulting in kidney failure.

Declining kidney function in people with MCKD1 leads to the signs and symptoms of the condition. The features are variable, even among members of the same family. Many individuals with MCKD1 develop high blood pressure (hypertension), especially as kidney function worsens. Some develop high levels of a waste product called uric acid in the blood (hyperuricemia) because the damaged kidneys are unable to remove uric acid effectively. In a small number of affected individuals, the buildup of this waste product can cause gout, which is a form of arthritis resulting from uric acid crystals in the joints. [Read more]


From StemCell-Kidney.com
The Symptoms of Polycystic Kidney Disease
Symptoms of polycystic kidney disease:

1, urinary abnormality

Main show of Polycystic Kidney Disease is proteinuria and hematuria. It is one of the symptoms at the early stage. Proteinuria is the most often symptoms. It is related to glomerular barrier function. Hematuria is the main factors in check that make polycystic kidney disease patient find themselves suffering from polycystic kidney. [Read more]


From AdverseEvents.com, (note: the web page for this story will not open)
FDA Advisory Committe to Evaluate Samsca for Treating PKD
Posted by at No comments:

Sunday, June 16, 2013

Living with PKD

 From DailyStrength.org, The PKD Support Group
Really Need Help and Input
Most of you probably won't remember my sister, but she has PKD, has survived peritoneal cancer as Helen has done, survived lung cancer, you name it, she has survived it. NOW, she has fallen and broken her wrist, naturally the arm where her fistula is located and it wasn't a clean break either, a nasty one! 


From WBOC.com, Channel 16 serving Delaware, Maryland and Virginia

Kent Co. Woman Getting New Kidney Through Swapping Process

MILFORD, Del. (WBOC)- For people who need an organ transplant, time on the waiting list is often measured in years. But a Kent County woman is getting off the list much quicker, thanks to a unique process.



From RenalDietGuides.com

[Drink water, do not smoke, keep ideal body weight, watch potassium intake, minimize protein intake, follow an alkaline diet by eating lots of fruits and vegetables, maintain vitamin D levels... read more]


From Beaver Dam Daily Citizen, Beaver Dam, Wisconsin
WAUPUN — When Dominique Oppermann was told she had a kidney disease it was a shock to the whole family.

“We weren’t exactly planning for it,” said her husband Dave, who works at Mercury Marine in Fond du Lac.  “It was a blow to us,” her son Travis, 26, said.  “It was unsettling,” said her son Jeremy, 22.

That’s because although her disease, polycystic kidney disease, is hereditary, she never knew she was prone to have it because she was adopted in Greece when she was 11 months old.



From Lansing State Journal, Lansing, Michigan
For more than 20 years, Roxanne Frith has lived with the knowledge that she drew the short straw in a genetic game of chance.

In line with the probabilities, about half of those in her family — Frith among them — have inherited polycystic kidney disease (PKD). And she’s now reached the point where she needs a kidney transplant.

But the longtime Lansing photographer and teacher views herself as fortunate in many respects.

Medical treatment has come a long way since Frith’s father died of the disease, she said. Her only sibling, who does not have PKD, is donating a kidney. And Frith’s colleagues in the Lansing arts community are pulling together to support her through the surgery and recovery process.

“I am overwhelmed. It has brought me to tears more than once,” Frith said.


From PKD Will Not Beat Me.com, a blog by Valen Keefer
During my recent eight-day stay at Sutter Auburn Faith Hospital, I liked to keep the curtain by my hospital room door partially closed. The first thing I would see were the person’s shoes walking into my room. I loved when I would see Noah’s shoes enter my room. I would yell, “Noah!” Then see his handsome face.

I had been in the hospital almost a week when I started my liquid/soft diet. One particular evening, my dinner consisted of puree soup, jello, mint tea and ice cream. Noah was sitting next to my bed as I slowly started to eat my dinner. The door to my room opened and we both looked down at the shoes entering the room. There was something else entering my room. It looked like the person was pushing a dolly. Noah and I looked at each other with puzzled expressions when all of a sudden a woman and a harp on wheels entered my room. I felt confused and excited. I wondered if someone ordered this and why there was a woman, with a warm smile on her face, and a harp now in my room.



Chinese Treatment of PKD

From PKDClinic.Blogspot.com

Can a Brother of a PKD Patient Give a Kidney Transplant

Patient: Hello, doctor, my younger brother is a PKD patient, and he is waiting for a kidney transplant while undergoing dialysis. I am his older brother, it seems that I am the only one who can help him. Here I want to know whether kidney transplant is the only way and how long can he live if receiving the kidney transplant. Many thanks.
Doctor: I can understanding your current feeling. It seems that dialysis or kidney transplant is the only way to treat kidney diseases in most countries. However, in China, there has no kidney transplant. That is to say, it is such a hospital that helps kidney disease patients avoid kidney transplant and dialysis or get rid of dialysis.
The therapy used in China is Micro-Chinese Medicine Osmotherapy+Immunotherapy... [this proves you can learn something new everyday.  In this case that China does not perform kidney transplants...]



From KindeyCaresCN.Blogspot.com
Chinese herb is special Chinese medicines and it has thousands of years’ history in China. Nowadays more and more westerners are becoming interested in Chinese herbs and they are wandering how these herbs can shrink the multiple cysts in the kidneys and why it can repair kidney damages and improve kidney functions.
One of the merits of Chinese medicine is that it can solve the root cause of the disease and does not cause any side effects or pains to the patients. The Chinese medicine emphasizes the concept of overall treatment. Though it takes effects more slowly compared with the Western therapies, its curative effects can last for a long time. And as we all know that the PKD is a chronically progressive kidney disease so that it needs continuous treatment and there is no instant way to cure it. The Chinese medicines can not only treat the multiple cysts in the kidneys, it can also improve kidney functions and enhance the patients’ immunity and help build up the patients’ physical health. [Now I understand why China puts emphasis on its traditional and holistic medicine if the policy is to minimize dialysis and completely avoid kidney transplants.]

From YouTube.com, posted by KidneyServiceChina.com

The Best Treatment for PKD without Dialysis or Kidney Transplant

Before he came here, his creatinine level was 4.25 umol/L. After one and a half months later with Micro-Chinese Medicine treatment, now, his creatinine level has been reduced to 3.4 umol/L.

"The doctors here treat me the best way I can imagine. It was different than I used to be treated in Greece. And I am satisfied for my treatment. I will continue Micro-Chinese Medicine for my better health."

From Fu Neng Kidney Disease Hospital

How to treat High Blood Pressure Caused by Polycystic Kidney Disease (PKD)?

Renal hypertension caused by PKD is different from primary high blood pressure. For high blood pressure caused by PKD, the key point of high blood pressure treatment is to treat polycystic kidney and reduce the pressure of cyst oppressing kidney.
People with Polycystic Kidney Disease and high blood pressure need to treat Polycystic Kidney Disease, which is the root cause of high blood pressure. PKD can be treated by Funeng Therapy.
Funeng Therapy develops from traditional Chinese medicine (TCM). The huge pharmacopeia of Chinese medicine contains plant, animal, mineral origin, most of them herbs, some of which have good effects on treating Polycystic Kidney Disease. These herbs, which are bitter if you take them orally, can be micronized and osmosed into kidney lesions with the help of osmosis devices. It has been practiced in clinic for more than 20 years and proved great effects on treating PKD.




Research
From PKDCure.org, The PKD Foundation
Two Top Doctors Dedicated to Ending PKD Honored

KANSAS CITY, Mo. – Dr. Vincent Gattone and Dr. Dorien Peters have been awarded the Lillian Jean Kaplan International Prize for Advancement in the Understanding of Polycystic Kidney Disease (PKD). The award is a partnership between the PKD Foundation and International Society of Nephrology (ISN) and recognizes a medical professional or researcher exhibiting excellence and leadership in PKD research and whose work demonstrates tangible achievement toward improving knowledge and treatment of PKD.



From Proceedings, National Academy of Sciences, USA
Polycystic kidney disease (PKD), the most common genetic cause of chronic kidney failure, is characterized by the presence of numerous, progressively enlarging fluid-filled cysts in the renal parenchyma. The cysts arise from renal tubules and are lined by abnormally functioning and hyperproliferative epithelial cells. Despite recent progress, no Food and Drug Administration-approved therapy is available to retard cyst growth. MicroRNAs (miRNAs) are short noncoding RNAs that inhibit posttranscriptional gene expression. Dysregulated miRNA expression is observed in PKD, but whether miRNAs are directly involved in kidney cyst formation and growth is not known. Here, we show that miR-17∼92, an oncogenic miRNA cluster, is up-regulated in mouse models of PKD. Kidney-specific transgenic overexpression of miR-17∼92 produces kidney cysts in mice. Conversely, kidney-specific inactivation of miR-17∼92 in a mouse model of PKD retards kidney cyst growth, improves renal function, and prolongs survival. miR-17∼92 may mediate these effects by promoting proliferation and through posttranscriptional repression of PKD genes Pkd1, Pkd2, and hepatocyte nuclear factor-1β. These studies demonstrate a pathogenic role of miRNAs in mouse models of PKD and identify miR-17∼92 as a therapeutic target in PKD. Our results also provide a unique hypothesis for disease progression in PKD involving miRNAs and regulation of PKD gene dosage.


From Hindawi.com, Case Reports in Medicine
Posted by at No comments:

Sunday, June 9, 2013

Symptoms of PKD

 From PKDClinic.blogspot.com

The Symptoms of Children Polycystic Kidney Disease

 It is a dominant inherited disease, some children may get it as soon as he was born, but in general have no obvious symptoms until they are about 40 years old. Nothing is absolute, some children can also show symptoms, so parents need to notice it. If parents know the symptoms of Children Polycystic Kidney Disease, they can judge whether children get disease and it is severe or not.
● Bellyache...


From PKDClinic.org
How long can I live with Stage 5 Polycystic Kidney Disease? What is my life expectancy? One patient asked me again and again, yesterday. I can deeply understand his scare, because stage 5 PKD means nearly all of his kidney function has been damaged by enlarged kidney cysts.
In stage 5 Polycystic Kidney Disease, patients only have 15% kidney function or less, so they have to live with some kidney replacement treatments or kidney repairing therapies. Most often, it is their own condition and treatment option that decide their life span. From the following content, you can find out different life expectancy of stage 5 Polycystic Kidney Disease patients with various treatments.


From KidneyABC.com

A patient consults us that he is a PKD sufferer and commonly experiences stomach ache and bloating.These conditions often make him feel full easily. He is wondering if stomach ache and bloating related to PKD or indicate other problems.The following article will give an explanation to the patients who have the same condition.
Reduced stomach volume
There is a variety of systems in our body and they are interact in certain ways.As the cysts enlarge severely in PKD, they can compress the stomach to reduce its room.When there is no much room in the stomach, it can make you feel full and lose appetite.
If stomach volume is the issue,you should try smaller but more frequent meals.That way your stomach does not feel full,but you’re still getting the nutrition you need.


Walk for PKD

From IndieGoGo.com

Albuqurque, New Mexico Chapter of the PKD Foundation is hosting a Bake Sale and Walk for PKD on July 20.  All proceeds to go to PKD Foundation.


From Ohio.com, the online Akron Beacon Journal
Front and center in the National Kidney Foundation’s Northeast Ohio Kidney Walk on Sunday at Great Lakes Science Center, 601 Erieside Ave., Cleveland, will be a brother and sister from Copley.
They’ll support each other and others during this awareness and fundraising walk, as they do on their daily journey battling a very rare kidney disease. Registration is at 8 a.m. followed by the walk at 9.
Sean Roach of the National Kidney Foundation shared their story:
“Siblings are often handed down the same traits, everything from hair color to height, but sometimes the genetic roll of the dice results in something unprecedented. For Rachel Sudhakaran, 29, and Neil Sudhakaran, 27, their parents’ pairing produced an extremely rare form of polycystic kidney disease.


Donate a Life

From ThisIsLancashire, United Kingdom

Thanks mum for giving me your kidney

“I CAN’T believe how quickly the time has flown by. Last year I was panicking about having the operation and getting through it.
“I couldn’t even think about how I would be now,” said John, of Turks Road, Radcliffe.
The 47-year-old was born with polycystic kidney disease, which had caused his renal function to fall to just 12 per cent.
Other members of his family had died from the disease and his father had a kidney transplant 22 years ago. It made John forgetful and increasingly tired due to the pressure on his other organs, and he was close to needing regular dialysis treatment.



Help with Kidney Transplant Expenses

From Tampa Bay Times
Donna Neal is awaiting a lifesaving kidney transplant as treatment for polycystic kidney disease. She already has the kidney — her niece Sharon Dunlap is the donor — but the procedure will be costly.
That's where the community comes in.
VFW 8681 and the National Foundation for Transplants (NFT) are raising funds for Neal's expenses with a pasta dinner from 2 to 7 p.m. June 15 at 18940 Drayton St. in Shady Hills. Dinner costs $6 a plate and includes mostaccioli, salad, a roll and dessert. There will be a cash bar, door prizes, a raffle and live entertainment from Jennifer McRae, JD and Zetha Lewis, the Farmboyz and Mudbone Mike & Barefoot Billy.

Living With PKD

From DailyStrength.org, a blog


From PKDWillNotBeatMe, a blog by Valen Keefer

It felt like an elephant was sitting on my chest. I was taking shallow breaths as the pain in my upper stomach was unbearable. A light touch of my arm rubbing across my stomach made me want to jump through the ceiling from excruciating pain. I was lying on a hospital gurney in the emergency room of Sutter Auburn Faith Hospital staring straight ahead waiting for the ER doctor to return with my blood work results. It was one week ago today when the ER doctor stood before me and confidently said, “You have pancreatitis.” My jaw dropped and I said, “No, no!” The doctor said, “The admitting doctor will visit you shortly and you will be transferred to a room upstairs.” I lay there in shock. Sheer disbelief. I began to softly sob as tears streamed down my cheeks and memories from the past consumed my every thought.


From Shelbyville Time-Gazette
Softball umpire Brad McTigue has had a rough go of it lately. Diagnosed with Polycystic Kidney Disease, his kidneys are struggling and only functioning at 10 percent.
Despite the health struggles, McTigue participated in the annual Spring Fling in Murfreesboro, umpiring the state softball tournament. Most people, at his stage of the disease, are too weak to work and many require dialysis.


From CovNews.com, Covington

A bike ride to benefit Vince Lowe Kidney Fund, June 8.  Vince Lowe might look like a picture of strapping health, but this biker has been waiting and searching for a kidney since 2009.


Dialysis

From Digital Journal
Sometimes kidneys can decrease in function over a period of time, such as when someone has Chronic Kidney Disease (CKD) or Polycystic Kidney Disease (PKD). Other times kidneys fail unexpectedly due to trauma, reaction to medications or other situations that damage the organ. This sudden loss of kidney function is called Acute Kidney Disease. Depending on the reason for the loss of kidney capacity, the need for dialysis could be something that is planned in advance or it might be a decision made quickly to save a life. Under either circumstance, dialysis patients need support in adjusting to their new situation. A dialysis center in Houston, Dialyspa, is working to make this transition easier for dialysis patients by offering personal tours, education and on-going support groups.

PKD Diet

From Fu Neng Kidney Disease Hospital
Care should be taken with amounts of water, salt, acid and other nutrients... Read more.




Research

From PKD Foundation

From Nature.com


Posted by at No comments:

Sunday, June 2, 2013

Polycystic Kidney Disease (PKD) diagnosis

 From The Times of Swaziland

Chronic kidney disease – a silent killer

There is a dangerous health problem on the rise, more common than diabetes and twice as prevalent as cancer. New evidence shows that the majority of those stricken by the condition do not even know they have it. What is this insidious epidemic? The answer is chronic (long-term) kidney disease.

Located just below the rib cage, on either side of the spine, the kidneys are like a laundry service cleaning your blood. Their function is extremely important, because if we were unable to get rid of waste materials they would build up until they poisoned our bodies.

Chronic kidney disease often goes undiscovered until symptoms show, but these symptoms do not arise until kidney function has fallen to less than 25 per cent of normal and irreversible damage has occurred. With your doctor’s help, you can detect the disease earlier and even prevent it altogether. What you can do for yourself is to get screened and stop the damage by changing your lifestyle and watching for warning signs.

Here are the most common signs and symptoms:...


From ClintonNC.com, Clinton, NC

Since the day I was diagnosed with Polycystic Kidney Disease (PKD), I have found support in talking to people who have been down the same road I have traveled. Now, I have known plenty of people who have kidney disease, but very few did I know when it first hit me that I had this little known disease.
Ironically, people are always surprised to hear that I have no family history of this disease since it is a genetic disease. In fact, it is caused by a dominant gene, which translates to the fact that I must have a parent who has PKD. However, I guess I truly am unique since I have no family history of this disease and I am part of that small percentage of patients who have disease simply because of a mutation in my genes. Of course if I had children one day, I now have a 50/50 chance of passing it on.
Knowing that I don’t have any family member to talk to about this disease, I just have always looked for people walking a similar path as mine. One person who has proven to be heroic in her battle with PKD is a Facebook friend of mine, Valen Cover Keefer. Her battle with PKD started when she was much younger than me. I had never even heard of PKD until I was 25, and at the age of 19, she was lying in bed at Johns Hopkins Hospital in Baltimore clinging onto life. She was diagnosed at the tender age of 10. Now she did have a family history of the disease, but it is not very common for someone with the dominant form of PKD, like mine, to be diagnosed at age 10. She received her transplant in 2002, and she is alive and well thanks to her friend Sally donating her a kidney.


From RaiseTheHammer.org, Hamilton, Ontario, Canada

The Polycystic Liver: Webinar & Talk

May, 26, 2013.  A polycystic liver can be a part of a Polycystic Kidney Disease (PKD) diagnosis. This free webinar and talk will help you understand what causes the polycystic liver, its effects, and how to manage the disease.
The Hamilton Chapter of the PKD Foundation of Canada is pleased to present a webinar by Dr. Marie Hogan of the Mayo Clinic in Rochester, MN, followed by a talk by two-time liver transplant recipient Jan Robertson, Co-Founder of The PKD Foundation of Canada.


Gift of Life

From KVIA.com, ABC affiliate El Paso

Gift of life: El Paso Sheriff's office employee donating kidney to co-worker

A Sheriff's employee is helping his co-worker live a fuller, longer life. Daniel Rollings, a grant writer for the El Paso County Sheriff's Office is donating a kidney to Michaela Hebeker, a Lieutenant with the Sheriff's Office.

Hebeker suffers from Polycystic kidney disease. The disease is genetic. Her liver only functions at 10 percent and she must undergo dialysis treatment every day for nine hours. Hebeker has not stopped working full time, which means she has only about two hours a day that are not devoted to dialysis or work.

After learning of her condition, Rollings said he was moved to help. "One day I just received a text from Daniel asking me 'what blood type are you',  I told him don't be fooling around with me because other people have also said 'if you ever need it - let me know' - and they didn't follow through," Hebeker said Tuesday.

Rollings was not fooling around. He's had to undergo six months of thorough tests - psychological and physical - to prove he's fit to donate an organ.



From TriCities.com, Marion, VA

Living donor from Marion becomes 'little angel' to longtime Rural Retreat coach

A couple of years ago, we got Dean Rhea in trouble. Sorry, Dean.
The News & Messenger visited “Big Tom” (of “Survivor” television fame) Buchanan’s farm and found an unexpected story: Big Tom’s lifelong friend and legendary local football coach Dean Rhea needed a kidney transplant. He had a hereditary disease called “polycystic kidney disease,” which had claimed his sister and father. Dean handed us a card with contact information for anyone who might be interested in being a living donor and we, as unsuspecting as he, ran that information in the newspaper. It turns out that’s illegal. It’s called “soliciting organs” and it got Dean chewed out.
So: Sorry, Dean. We didn’t know either.
But sometimes, “no news is good news” just isn’t true. A woman named Carol Edmiston read that article (published Jan. 22, 2011) and felt a sudden sense of purpose. She was going to give Dean Rhea a kidney. “She was so dead-set that that was something God had told her to do, so when I saw how much she believed that was going to happen, I quit worrying,” said Dean. “Everybody said, ‘Well, do you think it’s going to work, do you think it’s going to work?’ And I go, you know what, the face she had, there was no question to me that it was going to work.”




From BurtonMail, United Kingdom

'Priceless' donation leads to transplant games

IT was 2am when Jo got the phone call that would change her life.
Her husband was away and she had to feed the neighbour’s cat but the 56-year-old called a taxi and rushed to hospital.
“I told my husband not to panic but to come as soon as he could.”
After four years on a waiting list and dialysis, a kidney was found and now she could have her life back.
Eight years on, Mrs Hopkins, who volunteers at Burton Hospital’s Phoenix Hospital Radio, is hoping to raise awareness of organ donation by taking part in the British Transplant Games.

From News.Yahoo.com

Detroiter's Story of PKD Diagnosis, Kidney Transplant, and Outreach

People often speak of defining moments, events that change the course of their lives. Christopher Gutierrez of metro Detroit had such a moment while on a paint job. He fell off a ladder onto a 5-gallon paint bucket. The fall was hard enough that it caused a big bruise and resulted in a trip to the doctor.
"Just to be safe," Gutierrez said, "my doctor sent me for an ultrasound of the bruise, and that's when they noticed there was something wrong with my kidneys. They diagnosed that I had polycystic kidney disease (PKD). I was really asymptomatic when they discovered it. I had no clue."


PKD Fundraiser

From AdvertiserSeries, Sedgefield, United Kingdom

Spennymoor and Bishop Auckland family's fundraising

THE family of a baby who died minutes after being born are raising money to help people affected by the condition that claimed his life, and other causes close to their hearts.
Claire and David Vickery, from Spennymoor, lost their first child, Harry, to a genetic kidney disorder soon after his birth in January, 2010.
His death was a complete shock to the couple as they had no idea that both carried the same autosomal recessive polycystic kidney disease gene.
A year later Mr and Mrs Vickery, who now have a healthy two-year-old daughter, Lucy, raised more than £1,000 for national child bereavement charity, Sands.

From CommunityAdvocate.com, Northborough, MA

Northborough sisters golf fundraiser to aid kidney disease research

Sisters and Northborough residents Nancy Turpin Powell and Kristen Turpin were diagnosed with Polycystic Kidney Disease (PKD) six years ago. PKD is one of the most common, life-threatening genetic diseases, affecting thousands in the U.S. and millions worldwide. On Tuesday, June 4, the sisters are sponsoring the second annual Turpin Sisters PKD Golf Tournament at Wachusett Country Club in West Boylston to raise money to find new treatments and a cure for their disease. All proceeds will again be sent directly to the PKD Foundation. Last year’s event raised approximately $28,000.



From JewishTimes, Baltimore

Kidney transplant patient, thrill-seeker psyched for downtown rappel

At 9 months old, Jared Weiner was diagnosed with autosomal recessive polycystic kidney disease, a rare genetic deformation that enlarges the kidneys and can negatively impact the liver and spleen. At 10, he made it through a lifesaving kidney transplant. He’s endured pneumonia and kidney stones. He’s had biopsies, routine blood draws and ultrasounds. Every morning and every night he’s downing 10 to 12 pills aimed at keeping him alive.
When you catalog everything that Weiner, 18, has endured, stepping off the edge of a 28-story building doesn’t seem nearly as daunting; you can understand why he’s so fearless. 
On Saturday, June 8, Weiner will participate in the National Kidney Foundation of Maryland’s fourth annual Rappel for Kidney Health. Last year, Weiner, a graduate of Beth Tfiloh Dahan Community School, was the only rappel participant to be an actual kidney transplant patient. Gearing up for his second descent, he’s even more excited.



PKD Treatment

From KidneyServiceChina.com
Cordyceps, also known as 'winter worm summer grass', is a genus of fungi used for centuries in traditional Chinese medicine (TCM) with functions to enhance energy, longevity, and quality of life. How does it help people with Polycystic Kidney Disease?
Kidneys
Cordyceps can increase the blood circulation to other parts of the body, thus regulating the normal functions of the kidneys. Symptoms of PKD including fatigue, anemia, nausea, vomiting, loss of appetite, etc can be relieved. The renal function can be protected from being damaged.

Posted by at No comments:
Subscribe to: Posts (Atom)