From The Poly Post, CalPoly Student Newspaper, Ponoma, CA, by Adrian Danganan, Staff Writer
Diana Minor, director of financial aid at Cal Poly Pomona, is currently on a quest. In fact, she always has been. However, she always kept her journey a secret.
“For so long, I would just not share the story,” said Minor. “It was personal, and it was private. My husband and I felt that whenever you tell somebody your story, the first thing that’s said is, ‘oh, I’m so sorry for you.’ We didn’t want that. We didn’t want people to feel sorry for us.”
It was only last year that the mother of two decided that it was time to officially break her silence.
“People kept saying, ‘if you don’t share your story, how will people know? How will people know that your husband needs a kidney?’”
Her quest is no longer a secret: Diana is looking for a living donor who is willing to give her husband, Darryle, a kidney.
The Minor family has been searching ever since Darryle was diagnosed with polycystic kidney disease about 14 years ago. According to the National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC), polycystic kidney disease occurs when cysts filled with fluids begin to form on the kidneys. The cysts cause the kidneys to enlarge, which reduces their function and ultimately leads to kidney failure.
PKD affects 600,000 people in the United States and is the fourth leading cause of kidney failure. There is currently no cure.
When Darryle was first diagnosed in 1997, Diana and he were unfamiliar with the disease.
“Initially, we didn’t know what it was,” said Diana. “His lifestyle didn’t change.”
And sure enough, their lifestyle remained as it was. The Minors started a family and continued to live their lives without the disease affecting them. That is, until it became noticeably prominent.
“As he progressed and as his condition got worse, we really started learning more about PKD,” said Diana.
Both Darryle and Diana began attending support sessions at Loma Linda University Medical Center and listened to others that have dealt with the disease. Over the last three years, both have managed to educate themselves about PKD.
On Dec. 11, 2011, it was discovered that Darryle’s kidney function was reduced to less than 15 percent. This forced Darryle to be placed on dialysis, which affected the Minor family drastically.
“Our lifestyle changed,” said Diana. “Prior to these kidney issues, he was active with the kids. It got to the point where he just couldn’t physically do it.”
According to Diana, dialysis for Darryle occurs three times a week—Monday, Wednesday and Friday—for four hours a day. On the days he is not on dialysis, he usually is recovering from the day before.
“And after the weekend, he’s back to the same thing,” said Diana.
This forced Darryle’s employer to let him go on Christmas Day 2012. [Read more]
From ABC7News, San Francisco, CA
A woman in Phoenix is alive thanks to a priceless Mother's Day gift from her son.
Ingeborg McIntosh became sick with polycystic kidney disease and needed a transplant.
Fortunately, the woman who's had more than 120 foster kids, didn't need to go far to find a donor.
Her 27-year-old son Jordan, whom she adopted at birth, wasted no time stepping up.
"I kept telling him up until almost the time of the surgery, you can back out, and he said, 'no mom, I want to do this for you,'" said McIntosh. "He goes, 'you took me in and now I want to do this for you.' Can't ask for a better son."
The surgery went off without a hitch last month.
Jordan says after his mom fought so hard to keep him around, it was an easy decision to make and he's happy he could return the favor.
Most little girls don’t put a kidney on their birthday wish list, but Halle Ludwig, of The Woodlands, hopes to receive a kidney transplant next month at the Texas Children’s Medical Center right in time for her 12th birthday.
Halle, who attends Mitchell Intermediate, goes to TCMC three times a week for kidney dialysis, and is away from home from 12:30-8 p.m.
“She started about two months ago and is on the machine for four hours each time,” said her mother Christine Clinkenbeard.
Halle was born with Autosomal recessive polycystic kidney disease.
Thousands of dollars are needed to assist Clinkenbeard with gas expenses to and from the hospital, medications, medical care and the transplant itself.
Halle’s brother, Layne Ludwig, is a sophomore at The Woodlands High School and his friends have come to know about Halle.
TWHS Student Body President Chase Giles met Halle’s mother and offered to help.
Giles and school officials presented Halle and her mother a check for almost $13,000 Thursday afternoon at the high school.
“I have no words,” Clinkenbeard said. “I can’t even believe it.”
After raising $500 with T-shirt sales in January, Giles said he wanted to “upscale it.”
“We really wanted to find a way for the students to be involved, help and give back on behalf of The Woodlands High School,” Giles said.
He and about 65 other school leaders in the Principal’s Leadership Council brainstormed a month-long fundraising project.
The first week of April was the Highlander Hands Helping Halle fundraiser, where students wrote their name on a paper cut-out of a hand for any amount of money and taped it to a large banner in the school.
The second week, Student Council Treasurer Jason Hulet coordinated a student/faculty basketball game that raised more than $5,500.
“We sold tickets prior to it and accepted donations at the game,” Hulet said. “Halle attended and her school sang the National Anthem.” [Read more]
From WWMT, CBS News Channel 3, Western Michigan
A West Virginia woman needing a kidney transplant found a donor through an unusual source--Craigslist.
Cindy Prettyman was given two options--dialysis or a kidney transplant.
With very little kidney function, she decided to be placed on the transplant list, but her son wasn't satisfied.
So, he posted a "Wanted" ad for a kidney on Craigslist and surprisingly, the family received a call the very next day.
"When she first called me and said she was going to donate...disbelief. I didn't believe anybody would be doing something like that, so I didn't really take it seriously," Prettyman said. "I didn't have a whole lot of feelings, but when she called and said, 'we're a match,' it was like, my heart started pounding."
Jacklyn Mellott and Cindy were complete strangers, but the two were a perfect match.
Jacklyn says donating one of her kidneys to a person in need was on her bucket list.
The transplant surgery will take place this summer.
From The Ulster Herald, Northern Ireland, United Kingdom
ORGAN donation transforms lives, just ask Greencastle woman Roisin Hood.
Last year the mother-of-three decided to donate one of her kidneys to her younger brother Conor. The transplant was one of four that took place within the close family circle inside a seven month period last year.
Speaking to the UH of her remarkable decision, Roisin has encouraged local people to sign the organ donor register.
“Without doubt it is one of the best things you could ever do,” she said.
Polycystic Kidney Disease has been a present feature for much of Roisin’s life. Twenty years ago she lost her mother Peggy Coyle to the disease at the age of 48.
Growing up, the Greencastle woman and her three siblings knew there was a 50/50 chance of inheriting the genetic condition.
In the end, it was only Roisin who escaped the clutches of the disease.
“It was difficult knowing that the other three had it and I was the only one who didn’t,” she disclosed.
In a bid to increase awareness of the condition and raise funds for the Polycystic Kidney Disease Charity, Roisin and Conor have organised a sponsored walk for this Sunday.
Starting at McCrea’s Bar, Glenhull at 3pm, participants will have a choice of three or six mile routes around scenic Coneyglen. [Read more]
Statins given early decrease progression of kidney disease
Results from a study by University of Colorado School of Medicine researchers show that pravastatin, a medicine widely used for treatment of high cholesterol, also slows down the growth of kidney cysts in children and young adults with autosomal dominant polycystic kidney disease (ADPKD).
ADPKD is the most common potentially lethal hereditary kidney disease, affecting at least 1 in 1000 people. ADPKD is characterized by progressive kidney enlargement due to cyst growth, which results in loss of kidney function over time. At one time, ADPKD was termed "adult" polycystic kidney disease but researchers are finding that clinical manifestations may be evident in childhood and even in utero. This strongly suggests that earlier intervention in childhood may have the greatest long term effect on the progression of the disease.
"Based on our findings, we strongly recommend consideration of pravastatin use in ADPKD children and young adults unless there is a medical reason against taking a statin as determined by the patients' doctor," says the co-principal investigator Melissa A. Cadnapaphornchai, MD, from CU School of Medicine's departments of pediatrics & medicine, who conducted the study with Robert W. Schrier, MD, at the CU School of Medicine. "This is very exciting news as this is the first medication shown to help control kidney disease in ADPKD children."
The three-year study began with 110 children/young adults ages 8 to 22 years with ADPKD and finished with 92 participants. Each participant was randomized to receive either pravastatin or placebo completely by chance by a procedure similar to the toss of a coin. Treatment with pravastatin was associated with no significant side effects. However, it should not be used during pregnancy
The researchers emphasize that pravastatin is not FDA-approved for the treatment of ADPKD; therefore, it is essential that patients discuss the potential risks and benefits of treatment, including possible psychosocial and financial implications, with their doctor.
PKD Treatment & Research
From MedicalXpress
Results from a study by University of Colorado School of Medicine researchers show that pravastatin, a medicine widely used for treatment of high cholesterol, also slows down the growth of kidney cysts in children and young adults with autosomal dominant polycystic kidney disease (ADPKD).
ADPKD is the most common potentially lethal hereditary kidney disease, affecting at least 1 in 1000 people. ADPKD is characterized by progressive kidney enlargement due to cyst growth, which results in loss of kidney function over time. At one time, ADPKD was termed "adult" polycystic kidney disease but researchers are finding that clinical manifestations may be evident in childhood and even in utero. This strongly suggests that earlier intervention in childhood may have the greatest long term effect on the progression of the disease.
"Based on our findings, we strongly recommend consideration of pravastatin use in ADPKD children and young adults unless there is a medical reason against taking a statin as determined by the patients' doctor," says the co-principal investigator Melissa A. Cadnapaphornchai, MD, from CU School of Medicine's departments of pediatrics & medicine, who conducted the study with Robert W. Schrier, MD, at the CU School of Medicine. "This is very exciting news as this is the first medication shown to help control kidney disease in ADPKD children."
The three-year study began with 110 children/young adults ages 8 to 22 years with ADPKD and finished with 92 participants. Each participant was randomized to receive either pravastatin or placebo completely by chance by a procedure similar to the toss of a coin. Treatment with pravastatin was associated with no significant side effects. However, it should not be used during pregnancy
The researchers emphasize that pravastatin is not FDA-approved for the treatment of ADPKD; therefore, it is essential that patients discuss the potential risks and benefits of treatment, including possible psychosocial and financial implications, with their doctor.
Kidney Shortage Issues
This country is in the midst of a kidney crisis. Supply is not keeping up with demand. The costs of maintaining the sick on dialysis while they wait for transplants is exorbitant. And where there is supply, there are perverse incentives lowering the number of kidneys that actually make it to those in need.
There is a good solution to the problem — legal organ sales. But we seem unable to muster the courage to recognize that solution and change the law.
As the Trib's Luis Fábregas and Andrew Conte recently reported, in 2012 U.S. taxpayers spent more than $400 million on 13,296 kidneys, only to have one-fifth of those organs discarded. The kidneys cost $30,000 apiece and yet a significant percentage was thrown out instead of being transplanted into afflicted individuals. Transplant centers get punished for bad outcomes so it serves their statistics to discard kidneys rather than rack up too many failed transplants.
Yet, the statistics on those in need of a kidney are staggering, with more than 100,000 people waiting for a transplant. About 14,000 transplants were performed in 2011. But, on average, 4,300 die each year waiting for the cure that never comes. Meanwhile, in 2009, Medicare spent $29 billion treating kidney failure and dialysis costs 2.5 times as much as a transplant. Life expectancy also is much better with a transplant than with dialysis and transplants from living kidney donors are more successful than donations from cadavers. It would therefore be cheaper and more effective to have more transplants from living donors.
The best way to increase those numbers is to offer to pay people instead of allowing only noncompensated living donation. And given that our current system allows compensation for bone marrow, sperm donation and surrogacy, among other things, why isn't it OK to pay people for their kidneys? Not to mention that the black market in kidneys is booming. “It's ever growing. It's a constant struggle,” said Dr. Luc Noel, a World Health Organization official who monitors the transplant trade. “The stakes are so big, the profit that can be made so huge, that the temptation is out there.”
Legalizing the kidney market would serve several purposes. It would likely quickly erase the deficit of kidneys, U.S. taxpayers would save money since dialysis costs so much more than a transplant, the free market sale of kidneys most likely would lower the cost of each transplant, and it would offer those who need the money a legal, profit incentive.
Of course, there is plenty of opposition, either because for many the concept is repugnant or because medical care and the free market are perceived as mutually exclusive or because the poor, who would presumably take advantage of legal kidney sales, would somehow be exploited instead.
Compared with the desperate need among the hundreds of thousands of Americans suffering from kidney failure, the relative safety of transplant surgery for the donor and the economic benefits to taxpayers and compensated donors, these objections do not deserve to prevent a needed change to the law.
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