From PKD Foundation
Chicago Walk for PKD
September 20, 2015
Busse Woods, Grove 6
Registration is now open!
To learn more about the Chicago walk or to donate, click here.
Kidney Transplant
From Rockdale News, by Lisa Hetzel
Once again, I was clueless. I didn't know anything about kidney disease. I just knew that my cousin was dying.
Even though dialysis was an option, Denise's doctors were concerned that she wouldn't survive very long. On top of having Celiac disease (severely allergic to gluten), she was suffering from PKD, Polycystic Kidney Disease. PKD is a genetic disease that causes a rapid, irreversible, painful, decline in kidney function. In order to start dialysis, Denise would have to add a renal diet to her already restricted food plan. In order to get on a waiting list for a kidney, she would have to start dialysis. The average wait time is 5-10 years.
Many family members were ruled out, because they carried the PKD gene. Denise's husband had been tested. Even though he was a "match," he was declined as a donor. The doctors had determined that donating a kidney might compromise his health.
So, I offered to get tested. I had no idea how little I knew.
First, the entire donor process is confidential. Every person involved is required to tell potential donors that they can change their mind at any time. No questions will be asked. Most kidney transplants are done as a laparoscopy. In other words, donors usually end up with three or four small incisions. Hospital stays average three days. The recipient's insurance covers the evaluation and transplantation costs.
For most transplant centers, there are three phases: phone contact and questionnaire, a multi-disciplinary team evaluation and a panel review.
I was surprised to learn that I wasn't too old and met many of the first phase criteria: between 18-60 years old, good health, free from high blood pressure, diabetes, cancer, kidney or heart disease. Testing is not just to see if a donor is compatible with the person waiting for a transplant. Everything is done to make sure that no harm is done to the donor. Along with my health, I was asked about my family's medical history, my support system and responsibilities.
I would need to be willing to travel for the transplant. If I wanted to have my testing done here in Georgia, it might take months. However, I was told that if I went to Massachusetts, they could arrange for all of my testing to be done in one week.
This would be a great time to interject a dramatic sign from God. Movie directors would stop all action, include a gentle tear-jerking melody. The scene would include me in fervent prayer, on my knees while angel whispered, "You're the one. Go to Boston."
That didn't happen. Quite the contrary. Many friends and family members thought that I was crazy. I don't know how to describe it, but at that point, I knew that I was supposed to go. Regardless of the outcome, I had to try.
The next step was discussing the process with my M.D., Dr. Grace Loy. I was relieved when she encouraged me to see if I was a match. Most of the requested lab information was already on file. At this point, they needed my medical history, blood type and cancer screening tests (mammogram and the ever loving colonoscopy).
All test information looked great, so I headed to Boston. My cousin, Denise and her family welcomed me into their home. We spent a lot of time catching up. After seeing her and learning about how was feeling, I was more determined than ever to be her match.
My week was slammed with appointments. It started with an orientation. The donor advocate presented a program to explain the entire process and all of the possibilities. She said that a decision wouldn't be made until the donor team met to review all of my information.
There were chest X-rays, EKGs, blood tests, and many consultations.
Along with the tests to make sure that I was physically prepared, I met with specialists to address psychosocial factors. The psychiatrist interviewed me to make sure that I was mentally prepared if something went wrong. A social worker made sure that I had enough sick days for recovery (four to six weeks) and insurance to address any needs following donation.
By the end of the week, I think that I had the most thorough exam in my life. I secretly hoped that someone would say something unofficial to let me know that I was a match. I still had a lot to learn.
The last phase of the donor evaluation is done by a panel of all of the specialists. At Massachusetts, they meet each week to review the cases. When my case came up, the panel included the social worker, transplant coordinator, nephrologist, donor advocate, psychiatrist, and donor surgeon.
I got the call in September. I was approved as a donor, I called Denise. I couldn't believe that it was happening. The transplant was scheduled for December 30.
Stay tuned for the next episode, "The transplant."
Finding Kidneys
Elizabeth Casperite was diagnosed with polycystic kidney disease (PKD) about 10 years ago.
SOUTH COVENTRY TWP., Pa - A woman with a debilitating kidney disease reached out to the community for help and she is getting the ultimate gift. Elizabeth Casperite, 43, of South Coventry Township, Chester County was diagnosed with polycystic kidney disease (PKD) about 10 years ago.
She says it is a genetic disease that replaces healthy kidney tissue with watery cysts. "So the normal kidney is about the size of a fist and mine are about the size of footballs now," said Casperite.
Casperite had to wait to be put on the transplant list until her kidney function was 20 percent or less. That happened in April 2013. But the average wait in the Philadelphia area is 4-5 years, so a few months later she started campaigning for a kidney. She started with her website and it grew to car decals, social media and a large sign along Route 100 in South Coventry Township. "Really anyway you can get your message out there because you never know who is going to be your match," said Casperite.
Casperite had to wait to be put on the transplant list until her kidney function was 20 percent or less. That happened in April 2013. But the average wait in the Philadelphia area is 4-5 years, so a few months later she started campaigning for a kidney. She started with her website and it grew to car decals, social media and a large sign along Route 100 in South Coventry Township. "Really anyway you can get your message out there because you never know who is going to be your match," said Casperite.
It was through Casperite's push to the public that Maria Weaver-Hollowniczky, a total stranger, saw her story. "There are often times when we cannot help somebody and when you actually can it is incredible actually," said Maria Weaver-Hollowniczky, who plans on donating her kidney. Weaver-Hollowniczky knew a friend who had donated a kidney to a family member and thought why not try it.
They both underwent thorough testing and found they were a good match, but not a perfect match. So, they were approved to move forward with a pair donor program. That means they will be matched with another donor/recipient pair and they will swap kidneys. There will be four donor/recipient pairs involved in their swap. "Now we have like connected families and people I do not even know across the country will have a piece of my body in them, helping them live. It is like who gets to say that. This is a privilege. It is amazing," said Weaver-Hollowniczky.
Weaver-Hollowniczky says that it is a laparoscopic surgery, which is minimally invasive and the recovery time would entail one night in the hospital and about 2-3 weeks out of work. "They put two little ports in. I was picturing giant scars on my back. They are like no, you come out of surgery with a band-aid," said Weaver-Hollowniczky. Casperite and Weaver-Hollowniczky hope their story encourages other people to become living donors.
Health Experts Reveal Turmeric Is An Excellent Spice To Maintain Kidney Health
Orlando FL – August 12 2015 – The pain caused by kidney stones is one of the most terrible sufferings that one could possibly experience. The kidneys play an important role in the human body and when their health is placed in jeopardy that can lead to a myriad of health problems. The good news is that there is a spice believed to be helpful to individuals who have health issues with their kidneys.
Turmeric is an excellent spice to maintain kidney health. Kidney stones which are the most common problem encountered by the organ can be formed due to consumption of soft drinks due to the high content of phosphoric acid. Other foods and beverages that increase the risk of kidney stones are table salt processed meat processed food tap water and sugary foods.
According to experts living an anti-inflammatory lifestyle can significantly help decrease kidney stone risk. In addition to drinking increased amounts of pure water it is also recommended to consume anti-inflammatory foods and herbs such as turmeric.
“Turmeric contains a phytochemical called curcumin that has anti-inflammatory properties” said Divine Bounty spokesperson Melissa Scott.
Kidneys work by eliminating excess fluid and wastes from the blood. They help control blood pressure create new blood cells and maintain healthy bones. It is imperative to maintain kidney health and this can be done by limiting the intake of unhealthy food and beverage items.
Turmeric has been used for thousands of years to combat disorders and complications in the liver and kidneys. It is also believed to help reduce the chance of rejection that may take place after a kidney transplant surgery. Today an increasing number of scientists are trying to validate the efficacy of curcumin in the treatment of kidney stones and inflammation.
Clinical tests also revealed that curcumin has the potential ability to reduce the formation of cysts in the kidneys or in other parts of the body. According to the researchers from the Peking University curcumin has successfully slowed down the progression of kidney cysts by 62 percent. It has also demonstrated a promising result for treating polycystic kidney disease which can result in kidney failure.
Today it has become very easy to take advantage of the therapeutic benefits offered by curcumin. There are curcumin supplements available in the market and they can be purchased from local health stores and online.
One of the most popular curcumin supplements is one that comes with a bioavailability enhancing ingredient called BioPerine. These products are believed to be more capable of delivering the therapeutic benefits of curcumin to the body ().
Kidney Health
From MENAFN (Middle East North Africa Financial Network)
Orlando FL – August 12 2015 – The pain caused by kidney stones is one of the most terrible sufferings that one could possibly experience. The kidneys play an important role in the human body and when their health is placed in jeopardy that can lead to a myriad of health problems. The good news is that there is a spice believed to be helpful to individuals who have health issues with their kidneys.
Turmeric is an excellent spice to maintain kidney health. Kidney stones which are the most common problem encountered by the organ can be formed due to consumption of soft drinks due to the high content of phosphoric acid. Other foods and beverages that increase the risk of kidney stones are table salt processed meat processed food tap water and sugary foods.
According to experts living an anti-inflammatory lifestyle can significantly help decrease kidney stone risk. In addition to drinking increased amounts of pure water it is also recommended to consume anti-inflammatory foods and herbs such as turmeric.
“Turmeric contains a phytochemical called curcumin that has anti-inflammatory properties” said Divine Bounty spokesperson Melissa Scott.
Kidneys work by eliminating excess fluid and wastes from the blood. They help control blood pressure create new blood cells and maintain healthy bones. It is imperative to maintain kidney health and this can be done by limiting the intake of unhealthy food and beverage items.
Turmeric has been used for thousands of years to combat disorders and complications in the liver and kidneys. It is also believed to help reduce the chance of rejection that may take place after a kidney transplant surgery. Today an increasing number of scientists are trying to validate the efficacy of curcumin in the treatment of kidney stones and inflammation.
Clinical tests also revealed that curcumin has the potential ability to reduce the formation of cysts in the kidneys or in other parts of the body. According to the researchers from the Peking University curcumin has successfully slowed down the progression of kidney cysts by 62 percent. It has also demonstrated a promising result for treating polycystic kidney disease which can result in kidney failure.
Today it has become very easy to take advantage of the therapeutic benefits offered by curcumin. There are curcumin supplements available in the market and they can be purchased from local health stores and online.
One of the most popular curcumin supplements is one that comes with a bioavailability enhancing ingredient called BioPerine. These products are believed to be more capable of delivering the therapeutic benefits of curcumin to the body ().
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