From KSHB, Channel 41, Kansas City
University of Kansas Medical Center using new treatment for polycystic kidney disease
There is new hope for people living with kidney disease.
Researchers with the University of Kansas Medical Center are using blood pressure medication to treat Polycystic kidney disease.
It's a condition that enlarges the kidneys until the patient eventually has to go on dialysis or get a transplant.
The disease is hereditary and currently has no cure, and that's why Anne Bartels was willing to take part in the nine-year-long trial.
"I think I’m trying to prevent future generations from going through it. I'm hoping my kids don't have to suffer, like I've seen my family members suffer,” said Bartels.
The treatment requires patients to live a healthier lifestyle. {See video]
Gift of Life
From News Observer, Chapel Hill, NC, by CAROL OFFEN
Researchers with the University of Kansas Medical Center are using blood pressure medication to treat Polycystic kidney disease.
It's a condition that enlarges the kidneys until the patient eventually has to go on dialysis or get a transplant.
The disease is hereditary and currently has no cure, and that's why Anne Bartels was willing to take part in the nine-year-long trial.
"I think I’m trying to prevent future generations from going through it. I'm hoping my kids don't have to suffer, like I've seen my family members suffer,” said Bartels.
The treatment requires patients to live a healthier lifestyle. {See video]
Gift of Life
From News Observer, Chapel Hill, NC, by CAROL OFFEN
Question: If Mary donates one of her kidneys to John, Mary will have one left. How many will John have? (A) one, (B) two or (C) three.
Most of the time, the correct answer is (C). If leaving the failing kidneys in place isn’t causing a problem (say, high blood pressure), the surgeon will just tuck the third one into the patient’s belly.
It’s one of the many little-known facts about living kidney donation, a medical marvel that remains shockingly underused.
Living kidney donation has become simpler, safer and easier on the donor thanks to minimally invasive laparoscopic surgery. Yet the number of such transplants each year in the United States has been dropping almost steadily, down 14 percent over the past decade, with only 5,733 last year (about a third of all kidney transplants).
Meanwhile, the waiting list for a kidney from a deceased donor has surpassed 100,000 – and about 12 kidney patients die each day nationwide while often waiting years for a transplant.
Given that a kidney from a living donor often provides a better match, lasts about twice as long as one from a cadaver, usually starts working immediately and allows the surgery to be scheduled at an optimal time, the case for increasing living donation is compelling.
Congress and the public health community have been exploring innovative ways to attract more donors: with financial or in-kind incentives, such as college tuition – controversial because of the taint of turning body parts into saleable commodities – as well as reasonable accommodations such as ensuring that a donor would go to the top of a transplant list if the remaining kidney ever failed.
As a living kidney donor, I offer my own modest proposal: Let’s demystify kidney donation.
We’ve done it with breast cancer. Just as BRCA1 and BRCA2 genes have become part of the national conversation, so can CKD (chronic kidney disease) and PKD (polycystic kidney disease).
Clearly, many more people would be willing to consider donating a kidney – be it for a family member, a friend or even a stranger – if they were more familiar with the process and knew what it was like today.
Question: How long does a kidney donor stay in the hospital after a transplant? (A) two weeks, (B) one week, or (C) two to four days.
Answer: (A) might have been true in the days, more than a decade ago, when doctors usually had to remove a few of the donor’s ribs to take out a kidney. (B) is closer to current practice, but (C) is the answer. With the overwhelming majority (100 percent at some centers) of living donor kidney surgeries now being done laparoscopically (think: bikini incision ), most donors can go home with a moderate painkiller after a few days.
Obviously, it’s not a walk in the park – and certainly there are risks to any major surgery – but I was expecting something far worse. As a lifelong wimp who has passed out during an eye exam, after a flu shot and in anticipation of a blood test that didn’t even happen, I figure that if I can do it, anyone who’s healthy enough certainly can.
When friends visited soon after I came home from the hospital, I shocked them by answering the doorbell in street clothes. They couldn’t believe how well I looked (true, I got a new hairdo shortly before the surgery, but I don’t think that’s what they meant ) and acted. Hearing that repeatedly prompted me to confide in a friend, only half-jokingly, that I felt so good, I had to wonder if the surgeon had done it right.
Question: How soon can a kidney donor go back to work? (A) three months, (B) two months or (C) two to four weeks.
Answer: (C) Unless the job requires heavy lifting or much physical exertion, most people go back to work in a few weeks.
To be a kidney donor, you don’t have to be under 30. It depends on the health of the kidney. I was 58 when I donated my kidney to my son.
Research has shown that acts of kindness and charitable giving light up pleasure circuits in the giver’s brain. Can you imagine the light display when you’ve literally given a part of yourself?
I can.
Most of the time, the correct answer is (C). If leaving the failing kidneys in place isn’t causing a problem (say, high blood pressure), the surgeon will just tuck the third one into the patient’s belly.
It’s one of the many little-known facts about living kidney donation, a medical marvel that remains shockingly underused.
Living kidney donation has become simpler, safer and easier on the donor thanks to minimally invasive laparoscopic surgery. Yet the number of such transplants each year in the United States has been dropping almost steadily, down 14 percent over the past decade, with only 5,733 last year (about a third of all kidney transplants).
Meanwhile, the waiting list for a kidney from a deceased donor has surpassed 100,000 – and about 12 kidney patients die each day nationwide while often waiting years for a transplant.
Given that a kidney from a living donor often provides a better match, lasts about twice as long as one from a cadaver, usually starts working immediately and allows the surgery to be scheduled at an optimal time, the case for increasing living donation is compelling.
Congress and the public health community have been exploring innovative ways to attract more donors: with financial or in-kind incentives, such as college tuition – controversial because of the taint of turning body parts into saleable commodities – as well as reasonable accommodations such as ensuring that a donor would go to the top of a transplant list if the remaining kidney ever failed.
As a living kidney donor, I offer my own modest proposal: Let’s demystify kidney donation.
We’ve done it with breast cancer. Just as BRCA1 and BRCA2 genes have become part of the national conversation, so can CKD (chronic kidney disease) and PKD (polycystic kidney disease).
Clearly, many more people would be willing to consider donating a kidney – be it for a family member, a friend or even a stranger – if they were more familiar with the process and knew what it was like today.
Question: How long does a kidney donor stay in the hospital after a transplant? (A) two weeks, (B) one week, or (C) two to four days.
Answer: (A) might have been true in the days, more than a decade ago, when doctors usually had to remove a few of the donor’s ribs to take out a kidney. (B) is closer to current practice, but (C) is the answer. With the overwhelming majority (100 percent at some centers) of living donor kidney surgeries now being done laparoscopically (think: bikini incision ), most donors can go home with a moderate painkiller after a few days.
Obviously, it’s not a walk in the park – and certainly there are risks to any major surgery – but I was expecting something far worse. As a lifelong wimp who has passed out during an eye exam, after a flu shot and in anticipation of a blood test that didn’t even happen, I figure that if I can do it, anyone who’s healthy enough certainly can.
When friends visited soon after I came home from the hospital, I shocked them by answering the doorbell in street clothes. They couldn’t believe how well I looked (true, I got a new hairdo shortly before the surgery, but I don’t think that’s what they meant ) and acted. Hearing that repeatedly prompted me to confide in a friend, only half-jokingly, that I felt so good, I had to wonder if the surgeon had done it right.
Question: How soon can a kidney donor go back to work? (A) three months, (B) two months or (C) two to four weeks.
Answer: (C) Unless the job requires heavy lifting or much physical exertion, most people go back to work in a few weeks.
To be a kidney donor, you don’t have to be under 30. It depends on the health of the kidney. I was 58 when I donated my kidney to my son.
Research has shown that acts of kindness and charitable giving light up pleasure circuits in the giver’s brain. Can you imagine the light display when you’ve literally given a part of yourself?
I can.
From Highlands Today, Tampa, Florida, BY ANN MARIE O’PHELAN
In 1981, Charles Smith was given new kidneys and he was also given a new life. Smith’s hereditary disease, polycystic kidney disease, made his kidneys unable to function well.
Back in 1969, when dialysis and transplants were not as common, Smith’s own mother died from the same disease when she was only 46 years old. Although Smith spent nearly a month in the hospital after his transplant, these days the recovery is much faster and most often has positive results.
There are approximately 100,000 people waiting for an organ donation on any given day. And one organ donor can save up to eight lives.
While it’s clear that organs are needed and one donation can do a lot, many of us delay our decision to become an organ donor. However, the decision to donate organs becomes much easier if you focus on how many of your organs, or those of your loved ones, can help someone else.
For Pam Cooper, a Sebring resident, it was her daughter Kaytlyn’s organs that helped save many lives. On Oct. 1, a passing car struck 16-year-old Kaytlyn as she walked along a road with her boyfriend and another friend. Although she was brain dead on impact, her body was still viable, and she was still breathing.
Organ donation was a decision that Kaytlyn actually made herself. Kaytlyn registered as a donor when she filled out the paperwork for her driver’s license, an action that was later verified by the hospital.
“I remember her talking about why she chose to be a donor,” Cooper said, who added that Kaytlyn wanted other people to live should she pass on.
Knowing that organ donation was part of her daughter’s wishes, the decision was relatively easy under extremely painful circumstances.
“Her heart was given to a 9-year-old child,” Cooper said. She later received a letter later stating to whom Kaytlyn’s donated organs were given — all went to Florida residents.
❖ ❖ ❖
The process of organ donation often begins when the giver first registers as a donor when they apply for a driver’s license, as in the case with Kaytlyn, or on a state’s donor website, such as Donate Life Florida.
Every hospital is required by federal law to have a relationship with its local organ recovery organization. In Florida, that organization is LifeLink of Florida, a nonprofit organization responsible for organ recovery in west Florida. There are four such organizations in Florida, and together they facilitate organ donation throughout the state. The organizations work collaboratively to educate the public about donation and oversee the state’s organ, tissue and eye donor registry, Donate Life Florida. The national waiting list is managed by an organization called the United Network For Organ Sharing (UNOS.org). [Read more]
From WSB, Atlanta, Georgia, by Hope Jensen
Georgia officer who received kidney to appear on Dr. OZ
Greensboro, GA. The Georgia police officer who received a new kidney is back on the job just eight weeks after his transplant.
Greensboro police detective Raleigh Callaway was in stage 5 kidney failure when a photo of his daughters’ went viral on social media. The photos, taken by Brandy Angel, showed Braleigh and Delaini Callaway holding a sign that read, “Our Daddy Needs a Kidney.” When we posted the photos on the WSB-TV Facebook page, they were shared more than 45,000 times.
Just weeks later, a man in Texas saw Callaway’s story andstepped forward to donate his kidney.
"When I saw Raleigh's story, saw pictures of the girls and everything, and it hit me," said Carroll. "That's what kind of surprised me a little bit, there was never a doubt. I mean, it's like if my own dad needed a kidney -- that's how strongly I felt."
At the time, Chris Carroll was a complete stranger. But in the months since they first met, Callaway and Carroll have become more like brothers.
"Raleigh's my brother now, and I consider them part of my family now," said Carroll.
Callaway spent weeks recovering from the transplant, which took place in September. He is now doing well and back at work, making the most of his new lease on life.
“Him being able to go back to work is what really set the tone for our new life,” said Callaway’s wife Kristi. “Everyone was so excited to see him.”
During the process, Kristi created a Facebook page to keep family and friends updated on his progress. But as thousands of people liked the page, Kristi realized she could do a lot more and use the page to help others in need of a kidney.
“Everyone that’s been involved, we have all agreed that we want to spend the rest of our life using every opportunity we have to raise awareness and encourage someone to research living donors,” she said.
Kristi and Brandy Angel decided to form the organization Callaway’s Angels. Each week the group showcases the story of a person in need of a kidney transplant.
“I feel blessed and just want to help advocate for other people to help themselves,” said Kristi. “There are so many people in need.”
They started with a 56-year-old named Bret Reiff. They’ve since shared stories of mothers, fathers, grandmothers, teachers and many more. Kristi says she’s been amazed by the continued response by the community. [Read more]
Back in 1969, when dialysis and transplants were not as common, Smith’s own mother died from the same disease when she was only 46 years old. Although Smith spent nearly a month in the hospital after his transplant, these days the recovery is much faster and most often has positive results.
There are approximately 100,000 people waiting for an organ donation on any given day. And one organ donor can save up to eight lives.
While it’s clear that organs are needed and one donation can do a lot, many of us delay our decision to become an organ donor. However, the decision to donate organs becomes much easier if you focus on how many of your organs, or those of your loved ones, can help someone else.
For Pam Cooper, a Sebring resident, it was her daughter Kaytlyn’s organs that helped save many lives. On Oct. 1, a passing car struck 16-year-old Kaytlyn as she walked along a road with her boyfriend and another friend. Although she was brain dead on impact, her body was still viable, and she was still breathing.
Organ donation was a decision that Kaytlyn actually made herself. Kaytlyn registered as a donor when she filled out the paperwork for her driver’s license, an action that was later verified by the hospital.
“I remember her talking about why she chose to be a donor,” Cooper said, who added that Kaytlyn wanted other people to live should she pass on.
Knowing that organ donation was part of her daughter’s wishes, the decision was relatively easy under extremely painful circumstances.
“Her heart was given to a 9-year-old child,” Cooper said. She later received a letter later stating to whom Kaytlyn’s donated organs were given — all went to Florida residents.
❖ ❖ ❖
The process of organ donation often begins when the giver first registers as a donor when they apply for a driver’s license, as in the case with Kaytlyn, or on a state’s donor website, such as Donate Life Florida.
Every hospital is required by federal law to have a relationship with its local organ recovery organization. In Florida, that organization is LifeLink of Florida, a nonprofit organization responsible for organ recovery in west Florida. There are four such organizations in Florida, and together they facilitate organ donation throughout the state. The organizations work collaboratively to educate the public about donation and oversee the state’s organ, tissue and eye donor registry, Donate Life Florida. The national waiting list is managed by an organization called the United Network For Organ Sharing (UNOS.org). [Read more]
From WSB, Atlanta, Georgia, by Hope Jensen
Georgia officer who received kidney to appear on Dr. OZ
Greensboro, GA. The Georgia police officer who received a new kidney is back on the job just eight weeks after his transplant.
Greensboro police detective Raleigh Callaway was in stage 5 kidney failure when a photo of his daughters’ went viral on social media. The photos, taken by Brandy Angel, showed Braleigh and Delaini Callaway holding a sign that read, “Our Daddy Needs a Kidney.” When we posted the photos on the WSB-TV Facebook page, they were shared more than 45,000 times.
Just weeks later, a man in Texas saw Callaway’s story andstepped forward to donate his kidney.
"When I saw Raleigh's story, saw pictures of the girls and everything, and it hit me," said Carroll. "That's what kind of surprised me a little bit, there was never a doubt. I mean, it's like if my own dad needed a kidney -- that's how strongly I felt."
At the time, Chris Carroll was a complete stranger. But in the months since they first met, Callaway and Carroll have become more like brothers.
"Raleigh's my brother now, and I consider them part of my family now," said Carroll.
Callaway spent weeks recovering from the transplant, which took place in September. He is now doing well and back at work, making the most of his new lease on life.
“Him being able to go back to work is what really set the tone for our new life,” said Callaway’s wife Kristi. “Everyone was so excited to see him.”
During the process, Kristi created a Facebook page to keep family and friends updated on his progress. But as thousands of people liked the page, Kristi realized she could do a lot more and use the page to help others in need of a kidney.
“Everyone that’s been involved, we have all agreed that we want to spend the rest of our life using every opportunity we have to raise awareness and encourage someone to research living donors,” she said.
Kristi and Brandy Angel decided to form the organization Callaway’s Angels. Each week the group showcases the story of a person in need of a kidney transplant.
“I feel blessed and just want to help advocate for other people to help themselves,” said Kristi. “There are so many people in need.”
They started with a 56-year-old named Bret Reiff. They’ve since shared stories of mothers, fathers, grandmothers, teachers and many more. Kristi says she’s been amazed by the continued response by the community. [Read more]
From Stuff, New Zealand, by Julie Kaio
PRECIOUS: Jacqui and Colin Church, healthy and on the road to recovery after Jacqui gifted one of her healthy kidneys to Colin.
Port Waikato identity and Waikato District councillor Jacqui Church has bestowed the most precious and priceless of gifts - hope of a healthy life - on her husband of 22 years, Colin.
Jacqui has donated one of her healthy kidneys to replace Colin's dying organs - and given him a second chance at life.
"I've won the lottery over and over again, and we've now got a lot more living to do together, and as a family," Colin, 55, said.
The transplant has been an extremely personal journey for the couple, and their two adult children, who until now, have kept it private. They are sharing their experiences with the hope that they may educate others on the complexities of organ donations.
"We have been through so much, so now we just want to be able to help those who may be going through something similar," Jacqui said.'
Her kidney was successfully transplanted late September, but their quest to getting Colin well began many years earlier.
Colin suffers from a hereditary kidney disease. He was diagnosed with polycystic kidney disease (PKD) in his late 20s - since then it's been a waiting game to see when his organs would eventually fail.
That started around three years ago - his health steadily slipping as the months progressed. The couple knew then that a transplant would be needed within the next five years.
"I was getting more and more tired, lethargic. It's a gradual thing, but once you start getting older, you do notice it more," Colin said.
Medical monitoring was stepped up and when Colin's kidneys fell below the percentage failure threshold, they started to consider transplant options. Dialysis was only going to be a last resort and waiting on the public donor list offered no guarantees - so their ideal scenario was to find a live and matching donor.
Offering one of her kidneys to help her husband was a "no brainer" for Jacqui.
But accepting Jacqui's help was initially hard for Colin. [Read more]
Christian Ohlsen said the first thing he looked forward to after receiving his new kidney was eating Thanksgiving dinner.
“I’m looking forward to eating creamed onions and stuffed shells again,” said Ohslen, who had suffered a kidney disease since the age of 14
Ohlsen told his story on Wednesday at North Shore University Hospital in Manhasset as he, his husband Shaun Coride and his donor, Robert Joy, who is Coride’s uncle, dug into a pumpkin pie.
Joy donated what surgical director Ernesto Molmenti said was “one of the best kidneys he’s ever seen,” to Ohlsen, a Moriches resident, on Oct. 22 at the hospital in Manhasset after his kidney started to fail.
“I can’t even say how blessed we are that my uncle did something like that for us,” Coride said. “I wasn’t expecting him to do that.
During his time with the disease, Ohlsen said, he wasn’t able to eat foods high in phosphates, such as cheeses. He also wasn’t able to eat certain fruits and vegetables such as oranges, bananas and asparagus but said he was able to handle his eating limitations.
“I’m not a picky eater,” Ohlsen said.
Ohlsen said he is but one of many in his family who suffer from polycystic kidney disease, which is an inherited disorder in which clusters of cysts develop in the kidney.
“There are so many members of my family living with PKD,” Ohlsen said. “My father has already gone through a transplant because of PKD. Two of my aunts have this disease and one of my uncles has already passed away as a result.”
Ohlsen said he is the third generation of his family to suffer form the disorder. [Read more]
From MyFox Atlanta, Atlanta, Georgia, By Beth Galvin, FOX Medical Team Reporter
New federal guidelines on kidney allocation could impact many Georgians waiting for a deceased donor kidney. The rules, created by the non-profit United Network for Organ Sharing (UNOS), will go into effect Thursday, December 4th, 2014. The guidelines could benefit younger, healthier transplant candidates, and those who've spent years on kidney dialysis, like Eli Porter of Atlanta.
Dialysis is a huge part of Porter's life. Every Monday, Wednesday and Friday, the 28 year old spends three hours hooked up to a dialysis machine filtering waste from his blood. He says, "It is a way of life. It's tiresome some days."
Porter has been on the United Network for Organ Sharing's kidney waiting list for 2 years, on dialysis for 10 years. But, under the new kidney matching rules, he could move way up that list. He says, “I could get a kidney any day now, I could get one today."
Under the previous system, Emory kidney transplant surgeon Dr. Nicole Turgeon says a major factor for transplant candidates was waiting time: how long they'd been on the transplant waiting list. How long they'd been undergoing dialysis didn't really count. But that's changed. Dr. Turgeon says, "One of the major differences is that now you will be given credit for your dialysis time.
In addition to waiting time. So that will be added on to the time you've been on the waiting list."
Both adult and pediatric dialysis patients will be credited for their time on dialysis. So, that means if you began dialysis before you were listed, your wait time will be backdated to the day you began dialysis. That adjustment means Eli Porter will get credit not for 2 years, but for 10 years. Dr. Turgeon says the new guidelines could really help many longtime dialysis patients.
She says, "It is big news for them. I think it's really going to help them in terms of getting better access to the transplants. Getting a transplant sooner."
Under the new rules, every candidate will be assigned an individual score, known as an Estimated Post-Transplant Survival (EPTS) score.
It will be based on four factors: the candidate's age, time on dialysis, diabetes status, and whether he or she has undergone a prior organ transplant. [Read more]
Ahwatukee author shares hope, healing after tragic loss in ‘Waiting for Heaven’
Holidays can be a difficult time for families who have recently lost loved ones. In “Waiting for Heaven,” an Ahwatukee resident, Heather Gillis, reaches out to parents everywhere who have lost a child and are struggling to find peace within the midst of their pain. As the book jacket says, “Life can sometimes lead us to unexpected places, only to leave us broken, desperate and hurting.” Gillis tells of her personal struggle when her baby son, Bowen, died 13 days after birth of a fatal kidney disease, autosomal recessive polycystic kidney disease (ARPKD).
Although Heather and her husband, Mac, had no history of kidney disease, they discovered after Bowen’s birth that they had the mutation on their chromosomes, making them both carriers of the disease. One in 20,000 babies is diagnosed with ARPKD and they had a 4-in-1 chance of having a child with it. Fortunately, their first two children, Brooklyn and Blake, were not affected. Unfortunately, they were totally unprepared for Bowen’s diagnosis, with healthy ultrasounds throughout the pregnancy. Gillis’ story would be an inspiration to other parents who search for a way to explain the death of a sibling, including a list of books to read to toddlers.
In addition to her encouraging personal story of faith, hope and renewal, there are many resources listed — books, blogs and websites. Gillis created www.bowenshope.com to help spread hope to other families with ARPKD. Adult onset of this kidney disease is termed PKD and affects 1 in 500 adults, typically diagnosed in the early 40s. Her book can be purchased through her website at $1.99 or Amazon (price varies) and proceeds go toward helping children on dialysis. [Read more]
Dialysis is a huge part of Porter's life. Every Monday, Wednesday and Friday, the 28 year old spends three hours hooked up to a dialysis machine filtering waste from his blood. He says, "It is a way of life. It's tiresome some days."
Porter has been on the United Network for Organ Sharing's kidney waiting list for 2 years, on dialysis for 10 years. But, under the new kidney matching rules, he could move way up that list. He says, “I could get a kidney any day now, I could get one today."
Under the previous system, Emory kidney transplant surgeon Dr. Nicole Turgeon says a major factor for transplant candidates was waiting time: how long they'd been on the transplant waiting list. How long they'd been undergoing dialysis didn't really count. But that's changed. Dr. Turgeon says, "One of the major differences is that now you will be given credit for your dialysis time.
In addition to waiting time. So that will be added on to the time you've been on the waiting list."
Both adult and pediatric dialysis patients will be credited for their time on dialysis. So, that means if you began dialysis before you were listed, your wait time will be backdated to the day you began dialysis. That adjustment means Eli Porter will get credit not for 2 years, but for 10 years. Dr. Turgeon says the new guidelines could really help many longtime dialysis patients.
She says, "It is big news for them. I think it's really going to help them in terms of getting better access to the transplants. Getting a transplant sooner."
Under the new rules, every candidate will be assigned an individual score, known as an Estimated Post-Transplant Survival (EPTS) score.
It will be based on four factors: the candidate's age, time on dialysis, diabetes status, and whether he or she has undergone a prior organ transplant. [Read more]
Living With PKD
From Ahwatukee Foothill News, Phoenix, AZ, by Vy Armour
Holidays can be a difficult time for families who have recently lost loved ones. In “Waiting for Heaven,” an Ahwatukee resident, Heather Gillis, reaches out to parents everywhere who have lost a child and are struggling to find peace within the midst of their pain. As the book jacket says, “Life can sometimes lead us to unexpected places, only to leave us broken, desperate and hurting.” Gillis tells of her personal struggle when her baby son, Bowen, died 13 days after birth of a fatal kidney disease, autosomal recessive polycystic kidney disease (ARPKD).
Although Heather and her husband, Mac, had no history of kidney disease, they discovered after Bowen’s birth that they had the mutation on their chromosomes, making them both carriers of the disease. One in 20,000 babies is diagnosed with ARPKD and they had a 4-in-1 chance of having a child with it. Fortunately, their first two children, Brooklyn and Blake, were not affected. Unfortunately, they were totally unprepared for Bowen’s diagnosis, with healthy ultrasounds throughout the pregnancy. Gillis’ story would be an inspiration to other parents who search for a way to explain the death of a sibling, including a list of books to read to toddlers.
In addition to her encouraging personal story of faith, hope and renewal, there are many resources listed — books, blogs and websites. Gillis created www.bowenshope.com to help spread hope to other families with ARPKD. Adult onset of this kidney disease is termed PKD and affects 1 in 500 adults, typically diagnosed in the early 40s. Her book can be purchased through her website at $1.99 or Amazon (price varies) and proceeds go toward helping children on dialysis. [Read more]
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