Sunday, May 26, 2013

Making Chains of Life

 From New York Times, February 19, 2012, by Kevin Black

60 Lives, 30 Kidneys, All Linked

... Chain 124, as it was labeled by the nonprofit National Kidney Registry, required lock-step coordination over four months among 17 hospitals in 11 states. It was born of innovations in computer matching, surgical technique and organ shipping, as well as the determination of a Long Island businessman named Garet Hil, who was inspired by his own daughter’s illness to supercharge the notion of “paying it forward.”...

The National Kidney Registry provides a way to make matches between those making a donation of a kidney and those who need a kidney.  It has help facilitate over 710 transplants and has an active donor pool of 334.  At their website simply choose your situation: donor or in need.  Register today.
Donate a Life

 From Middletown Patch, CT

Middletown Woman Donates Kidney to Husband With No Hesitation

Colleen Alleyne turned out to be a match for a kidney donation for her husband, Michael, who for years suffered from polycystic kidney disease and also is a diabetic.

But there was a stumbling block: Colleen, 46, was told she needed to lose 20 pounds. Although she had been working out steadily prior to learning this, the weight was not coming off easily. 


From MapleRidgeNews, British Columbia, Canada
At a one-year reunion to mark his life-changing kidney transplant, Phil Rosario announced he and his wife Keesha will  begin work for people who suffer from the same disease.
At the top of their list will be lobbying for a national organ donor registry, because presently matching of donors with those needing transplants is done only on a provincial basis. Last year, doctors told Phil he could be in for a nine-year wait to get a new kidney.
Keesha said a suitable donor could be available in another province, and health officials here wouldn’t know it.
“For anyone who needs an organ, that’s ridiculous.”
Phil’s transplant got a lot of media attention last year because a complete stranger – a Washington State mayor – came forward as a donor, after a chance meeting.

From Fox 6 News, Milwaukee, Wisconsin

Man who took out billboard still looking for a kidney donor

Jeff Nelson continues to search for a perfect match in his quest to find a kidney donor. Back in March, FOX6 News profiled Nelson, after he took out a billboard seeking a donor in the Menomonee Valley.
Nelson has polycystic kidney disease. Today, his kidneys are the size of two NFL footballs, filled with thousands if not millions of cysts.
“My kidney function is down to 11%,” Nelson said.



 Living with PKD

From The Star, United Kingdom

Star’s organ drive is halfway there

The Star’s campaign to sign up 12,000 new organ donors from South Yorkshire and Derbyshire has recruited more than 7,600 lifesavers since its launch in January.
Transplant survivor Dave Horner - whose wife Karina gave him one of her kidneys as he suffered with polycystic kidney disease - said the news was ‘absolutely amazing’.
The 44-year-old added: “It’s great news because it means more people can have the second chance that I have had.”


 From PKD Foundation, New Jersey Chapter
New Jersey Chapter Facebook Page
From Miami Herald, Florida
Prep recruiting pioneer Larry Blustein honored for four decades of work, fight against disease

After 40-plus years of promoting athletes from every walk of life, the script flipped for Florida high school football guru Larry Blustein at The Miami Herald’s All-Broward Athletic Awards on Friday.
Bluestein, who went public with his ongoing battle with kidney disease for the first time earlier this year, was given a standing ovation after receiving the Leo Suarez/Walter Krietsch Courage Award at the Signature Grand in Davie.

Read more here: http://www.miamiherald.com/2013/05/25/3415380/prep-recruiting-pioneer-larry.html#storylink=cpy


Read more here: http://www.miamiherald.com/2013/05/25/3415380/prep-recruiting-pioneer-larry.html#storylink=cpy


From YouTube.com
PKD and Health Insurance
From DailyStrength.org, PKD Support Group
Home UTI Test Kits


 From DailyStrength.org, PKD Support Group
Discussion about Tolvaptan

 At my nephrologists appointment yesterday he told me about Tolvaptan. Here is a summary of what he said: 
• 
Avoid use of Samsca in patients with underlying liver 
disease, including cirrhosis, 
because the ability to recover from liver injury 
may be impaired ... extensive discussion follows...

For Doctors

 From Harvard School of Medicine

6th Annual Symposium on Polycystic Kidney Disease
Posted by at No comments:

Sunday, May 19, 2013

Donate a Life Stories

 From KATU.com, Longview, Washington

Kidney connection: A new chance of life from 8-year-old boy

After 8-year-old Noah Waite-Brown died in a car crash along with his father last month, his family decided to donate his organs.  His heart is now beating in a 3-year-old boy. His liver gave life to a 1-year-old. Part of his eyes now give other kids the chance to see.  And one of Noah’s kidneys didn’t go far. 

As it turned out, Tammie Mattison, who works at Noah’s school, Columbia Heights Elementary School in Longview, was the recipient of the little boy’s kidney – a gift that overwhelms her.

“He’s my hero,” she says simply.


From Detroit.CBSlocal.com, Detriot, Michigan
What are the chances you’d give a co-worker a kidney?
Kathy Beyers and Mary Simon worked together for 25 years and eventually became exercise buddies. Today, the two share an even deeper bond after Beyers gave Simon a kidney.


From MyProgressNews, Parker, PA
Whyte’s Comet Market in Parker will be celebrating our 15 year anniversary at our present location this June. Whyte’s Comet is owned by Jay and Diane Whyte as a family owned business, with their son Allen as head of the meat department and butcher. The Whyte family, thru parents and grandparents, have been the grocery business for over 60 years. Jay and Diane have decided to use this special anniversary occasion to raise money for the Polycystic Kidney Disease Foundation.

This disease has affected Jay, their two daughters, his sister, and his mother and other family members. Along with family, it has also affected our friend and Pepsi sales representative, Mike Eismont and his family. Both Jay and Mike have already undergone kidney transplants from this disease. A local connection has been made with our family and Dr. Patricia Gabow, of Denver, Colorado, who is the daughter of Mr. and Mrs. Richard Helmintoller of St. Petersburg. She along with Irene Duley, RN, ran a study at Denver Children’s Hospital for years, and which our daughters were lucky enough to participate in, thru the PKD Foundation. Our daughter Haley, still participates in a PKD Study at Emory University Hospital called the Crisp Study


From FrasierCoastChronicle, Australia
AT ONLY 21 years of age, Alan Smith was diagnosed with polycystic kidney disease.
It didn't come as a huge surprise; Alan knew he had inherited the genetic condition.
"I was born with it, I knew I had it," he said. "Basically if you're going to get kidney disease, this is the best one."
Polycystic kidney disease belongs to a group of diseases known as cystic kidney disease. It is characterised by the growth of abnormal blisters of fluid in the kidneys.  There is no cure but medical treatment can manage symptoms and reduce the risk of complications.
Alan was able to manage his condition until he turned 50, when he started dialysis.


From heraldargus.com, La Porte, Indiana

Annual PKD cruise set for Sunday

The Northern Indiana Chapter of Polycystic Kidney Disease will host its 5th annual Cruisin' for a Cure car show and 40-mile cruise Sunday at the La Porte County Fairgrounds.

There is no pre-registration for Cruisin' for a Cure, and charge to participate is $10 per vehicle.The car show, which will be held rain or shine, is from noon to 2 p.m. The 40-mile cruise begins at 2:30 p.m. , and it is an all-wheels-are-welcome event.

"We do welcome anyone," said Laura Moyer, PKD Foundation Northern Indiana Chapter coordinator. "We welcome all of them not only antique autos. Doesn't matter what year, make or model all wheels are welcome. Motorcycles are welcome, too. If you got wheels you can come on in."



Living with PKD

From zocdoc.com
Q: The Polycystic kidney disease ended in renal failure and death for my mom and grandmother had one kidney leading to heart problems from strain causing her death. In 2009 CT showed 2 cm cyst on my right kidney and one on my ovary. At times my skin is almost transparent or thin and you can see these white criss-crossing patterns all over - they are raised looking like I have uneven skin these look like the models of ligaments and muscles you see on skeletons in any medical book or website. My polar seems to turn a pale kinda grayish yellow a weird color. I cannot find anything anywhere that fits this description.

A: It sounds like you have had some changes or concerning findings with your health recently, in addition to the family history of polycystic kidney disease. There are several reasons why the best thing for you to do right now is to see your primary care physician ...


From PKDCure.org, The PKD Foundation

PKD Facts, About the PKD Foundation.


From dailystrength.org

Want to post questions about kidney transplants.


From Glembook.com, 

New York State Department of Health, Children.  A health resource guide for families and schools.


From Glembook.com


From PR.com
On May 26, the Hamilton Chapter of the PKD Foundation of Canada will host 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.


Treatment

From pkdclinic.blogspot.com
Micro-Chinese Medicine can dilate the renal blood vessels, improve blood circulation, enhance the permeability of renal blood vessels, and reverse pressure difference between liquid in the cysts and liquid in the blood vessels out of the cysts, so as to make the liquid pass with the blood circulation gradually and excrete from body through blood circulation. Therefore, the cysts will contract and diminish at last.


Research

From sciencecodex.com
Experiments at Johns Hopkins have unearthed clues about which protein signaling molecules are allowed into hollow, hair-like "antennae," called cilia, that alert cells to critical changes in their environments.
Researchers found that the size limit for entry is much greater than previously thought, allowing most of a cell's proteins into cilia. The researchers believe that the specific collection of proteins in each cilium, customized to the needs of each cell type, is determined by whether and how cilia keep proteins inside once they enter –– not which ones they allow in initially
Posted by at No comments:

Sunday, May 12, 2013

Donate a Life Month, April, has come and gone.  But the need certainly has not gone away.  PKD is a chronic genetic disease which afflicts over 600,000 in the USA and millions more around the world.  In the last few weeks we have seen and posted articles about giving life, treatment options, working to make donations for a cure, research directions and results.  Hope continues.  Make a donation at PKDCure.org, the online home of the PKD Foundation, or take a walk.  Read the news and pass it on.

Make a Donation

 From WalkForPKD.org 2013
Unite to Fight PKD
About PKD.  Polycystic kidney disease (PKD) is one of the world's most common, life-threatening genetic diseases. PKD causes fluid-filled cysts to grow on the kidneys affecting kidney function and often leading to kidney failure and death. Parents with PKD have a 50 percent chance of passing it on to their children. Because it is passed from generation to generation, PKD often affects many people in one family.

 From AirdrieEcho.com, Airdrie, Alberta, Canada

Local families participate in Kidney March to raise awareness of kidney disease

Two Airdrie families will be embarking on a 100-kilometre trek this fall, doing their part in the fight against kidney disease.
The Nadraszky and Lawrick-Radu families will participate in the Kidney March, where participants walk the incredible distance in three days throughout Kananaskis Country, sleeping in tents each night.
While both have personal reasons for deciding to participate, in the end their decisions rested with wanting to raise awareness about the multiple forms of kidney disease that affect 2.6 million Canadians each year.

From EllesmerePortPioneer.co.uk, Chester, England

Great Sutton London Marathon runner raises Kidney chairty cash

A RUNNER from Great Sutton was the 907th man to finish the London Marathon in his first-ever attempt.
John Stone’s two-year-old nephew, Luke, has a genetic illness called Polycystic kidney disease.
So despite not being sporty at school, 25-year-old John set himself the task of running in the famous race to raise money for Kids Kidney Research.
Friends and family rallied together and John raised more than £3,000 for the charity.

From oldham-chronicle.co.uk, England
An extraordinary act of friendship has given a Shaw man a new lease of life. 

Liz Whitworth and her best friend’s husband Mark Holden are recovering well following a successful kidney transplant. 

Liz (45) underwent surgery to pass on her healthy kidney to Mark, who suffers from a genetic degenerative disorder, Polycystic Kidney Disease. Mark was destined for dialysis without a transplant. 

From yorktown.dailyvoice.com, Yorktown, New York
Yorktown's own Chuck Newman is set to be the guest of honor at the Hudson Valley Chapter of the Polycystic Kidney Disease Foundation's "Cocktails For A Cure." 
The third-annual event and fundraiser is set for 6 p.m. on Thursday at the Vintage Restaurant and Lounge in White Plains. This year's celebration is set to honor Newman and 30 years of research for the PKD Foundation, according to a press release. 
"The evening benefit will honor Charles J. (Chuck) Newman for his ongoing efforts to raise money and awareness of PKD which touches his entire family," representatives said in the release. "Chuck has served as a co-captain for his walk team, Benny’s Brigade in honor of his father who passed away from PKD."
Benny's Brigade has raised more than $41,000 for PKD research, according to the release. Chuck Newman also has volunteered as "a resource to educate individuals and families at local and regional seminars on insurance issues for those affected by PKD," according to the release.

Living with PKD 
From pkdwillnotbeatme.com, written by Valen Keefer
Three years ago today, Noah and I woke up in Colorado Springs, Colorado. Our Volkswagen station wagon was filled with the supplies we needed for our month-long cross-country journey and move from York, Pennsylvania to Auburn, California. It was day number five on the road. A new day. A new horizon of hope.

From dailystrength.org


Treatment Directions
From Vital Signs, Viewpoints, Indiana University
Do medications developed to treat type II diabetes offer hope for patients with polycystic kidney disease? An IUPUI campus collaboration of IU School of Medicine and Purdue School of Science researchers funded by the Indiana Clinical and Translational Sciences Institute may provide the answer.


What is PKD, What are the odds?
From kidneylowerbackpain.com

What is Polycystic Kidney Disease?

“PKD” means polycystic renal system ailment distinguished by the accumulation of numerous cysts on kidney surface area results in boost in its dimension as well as weight. The significance of cyst stuffed kidney could reach 20-30 pounds. It is the most usual genesiology renal disorder gives via households. If each moms and dads are actually carrier of this condition there is 50 % chance for little one to create this condition yet if among the parents brings this the opportunity of its situation in youngster others 25 %. Within this situation youngster performs not create this but simply passes this to the next generation.


From Fu Neng Kidney Disease Hospital

Genetic Odds of Polycystic Kidney Disease

Polycystic Kidney Disease (PKD) refers to one kind of hereditary disease with many or countless cysts filled with fluid in the kidneys. With the progressing of the disease, the cysts will become bigger and bigger. Without effective and timely medical treatment, the cyst enlargement may cause kidney impairment and even Kidney Failure. Well then, how about the genetic odds of Polycystic Kidney Disease?





Research
From The University of Kansas, Medical Center

PKD Rodent Model Drug-Testing Core

The PKD Rodent Model Drug-Testing Core will provide reagents and services to Kidney Institute investigators and to investigators at KUMC and other institutions in established PKD labs or labs new to the PKD field. A number of mouse PKD lines are available for breeding experiments and for tissue harvest. The Core will also provide expertise and experimental support in handling PKD mouse models and in processing and analyzing tissue specimens.


From renalbusiness.com

RESEARCHERS CREATE NEW APPROACHES TO TREAT CHILDHOOD PKD

MILWAUKEE—A collaborative team of physician-scientists at the Medical College of Wisconsin (MCW) and Children's Hospital of Wisconsin Research Institute has developed a new evidence-based, clinical algorithm to help physicians treat complex patients with autosomal recessive polycystic kidney disease (ARPKD), according to a paper in the April 17 Pediatric Transplantation.
Posted by at No comments:

Sunday, May 5, 2013

Donate A Life

 From Medicaldaily.com
Ohio Elementary School Teacher Gives Life Lesson With Kidney Donation

 Every 10 minutes, a new person is added to the organ transplant waiting list. The wait for a kidney transplant could be between a few months to several years in order to find a good match between recipient and donor. Currently in the United States, there are more than 117,000 people who are waiting for organ transplants, with more than 95,000 who await kidneys, Donate Life New York reports.

 8-year-old Ohio student receives kidney transplant from a former kindergarten teacher.



From Daily Mail, United Kingdom
The extra special delivery from the postman who donated his sick colleague a kidney


From Lake Norman Citizen, North Carolina

Lake Norman Charter teacher would give his wife a kidney ... and he is!

Brandon Bates is a teacher in the Social Studies department at Lake Norman Charter High School in Huntersville. Each day, students in his classes learn about historic events, human achievements, how the past shaped the present and how even just one simple act can have a tremendous impact.
And next month, through of mixture of love, fate and circumstance, Bates will conclude his personal evolution into a model of what one person can do for another.

From Gazettelive.co.uk, United Kingdom

Zumbathon in aid of Marley, 4





 Help Cure PKD

 From PKDCure.org, PKD Foundation
Run For PKD Brochure

Join us in raising awareness, funds and hope for PKD in some of the most high-profile races across the country.



From Chesterchronicle.co.uk, United Kingdom

Former Bishops’ Blue Coat CE High School students is top runner in London Marathon

A FORMER student of Bishops’ Blue Coat CE High School was the 907th man to finish the London Marathon in his first ever attempt.  John Stone, of Great Sutton, was running for his two-year-old nephew, Luke, who has a genetic illness called Polycystic kidney disease.  Describing himself as ‘not sporty at school’, 25-year-old John set himself the task of running in the famous race to raise money for Kids Kidney Research.  Friends and family rallied together and John raised more than £3,000 for the charity.




From PKDClinic.org

Life Expectancy for Polycystic Kidney Disease Stage 5

Once PKD patients’ condition develops stage 5, their low kidney function may urge them to begin dialysis or do kidney transplant. At this time, most of them may be concerned the life expectancy for people with Polycystic Kidney Disease Stage 5. How long can they live with Stage 5 PKD? Can’t they do anything but only wait to die?


From PKDClinic.org
Medical test is a must to diagnose Polycystic Kidney Disease, but aside from medical methods, there are some other factors that also can help to diagnose this genetic kidney problem. The following is the related information about how to diagnose Polycystic Kidney Disease and hope it is helpful.


Living With PKD

From PKDwillnotbeatme.com, written by Valen Keefer

Wonderful To Be Alive

Yesterday I was asked, “How does it feel to be a spokesperson for so many causes where people look at you and the first thing they think of is your kidney issues?” The first thought that popped into my mind was that it makes me happy and proud that I have succeeded and accomplished my goal by having someone ask me that question. This means that I am helping to put a face to kidney disease and raise awareness so that hopefully when we say “PKD,” people will know what it stands for and, most importantly, there will be a cure one day! I had never been asked this question and have been pondering it since yesterday.



From Answers.Yahoo.com

I'm 40 years old with p.k.d. & my kidneys are working at less than 50% whats to expect?

Answer 1:  Dialysis treatments are usually used when kidney function has fallen below 25%. I couldn't be so sure with those with PKD though. It's best if you constantly check with your doctor about this just to be on the safe side. I also found some posts at http://www.dialysisinjuryhelpline.com/ that may be of help.


From PKDClinic.org
Can people with Polycystic Kidney Disease eat starfruit? As the weather becomes warm, more and more people prefer to eat more fruits. Starfruit rich in nutrition may be a good choice for them. However, can all people with Polycystic Kidney Disease eat this fruit? The answer will be quite different for people with different conditions.


From DailyStrength.org


I was running about fifty miles a week about a year ago. My doctor suggested I stop running to avoid cyst rupture. I really wasn't feeling bad other than back pain which I thought was from the pounding which I later discovered was kidney pain. 


From Kidneyservicechina.com

Energy drinks are many people’s first choice for its delicious taste. However, can polycystic Kidney Disease patients drink energy drinks?

Treatment

From Medpagetoday.com, FDA warning
WASHINGTON -- The kidney drug tolvaptan (Samsca) should be used for no more than 30 days, and should not be prescribed for patients with underlying liver disease, the FDA warned Tuesday.
The drug, which is used to treat low serum sodium levels, "can cause liver injury, potentially requiring liver transplant or death," the agency said in an announcement posted on its website.


From Nephrologynews.com
Researchers have developed a new evidence-based, clinical algorithm to help physicians treat complex patients with autosomal recessive polycystic kidney disease (ARPKD). The research, written by scientists at the Medical College of Wisconsin and the Children's Hospital of Wisconsin Research Institute, appears in the April 17 edition of Pediatric Transplantation. ARPKD is a rare genetic disorder that causes progressive disease of the kidneys and liver.


Research

From Biomedcentral.com, Case report from Japan
We report two cases of MPO-ANCA positive ADPKD. A 60-year-old Japanese woman (case 1) and a 54-year-old Japanese woman (case 2) presented with RPGN featuring severe proteinuria and microscopic hematuria. In both patients percutaneous needle biopsy of the kidney revealed MPO-ANCA-associated CrGN with a paucity of glomerular immunoglobulin staining. Each patient received intravenous methylprednisolone for 3 days, followed by oral prednisolone. Case 1 showed gradual improvement and has not progressed to end-stage renal disease (ESRD), but case 2 developed ESRD requiring hemodialysis within one month despite treatment.
Posted by at No comments:
Subscribe to: Posts (Atom)