Living with PKD
Scientists removed the cells from a rat kidney, leaving only its collagen scaffolding, then re-seeded the scaffolding with neonatal kidney cells and endothelial cells, producing a functional man-made kidney that, when transplanted into rats, filters waste and produces urine. It raises hopes for a bioengineered human kidney. (Ott Laboratory/Massachusetts General Hospital Center for Regenerative Medicine via Reuters)
Each week, In Theory takes on a big idea in the news and explores it from a range of perspectives. This week we’re talking about government compensation for organ donors. Need a primer? Catch up here.
Benjamin D. Humphreys is a nephrologist and chief of the division of nephrology at Washington University in St. Louis. He cares for patients with kidney disease and runs a research laboratory aimed at developing new therapies to treat kidney disease, including stem-cell-based therapies.
Kidney failure is a growing problem in the United States, with more than 100,000 new cases per year. There are not enough kidneys available to transplant all of these patients, so the majority are treated with dialysis. The therapy is certainly life-saving but is also costly, inconvenient for patients and itself causes accelerated heart disease. The risk of death for an average dialysis patient is 20 percent per year.
Dialysis patients make up about one percent of the Medicare population, but paying for dialysis costs seven percent of the entire Medicare budget. Clearly there is a strong need for innovative new therapies and approaches to the problem. We already have some new ideas being developed — at-home and portable dialysis, for example. Yet simply improving the existing technology is an evolutionary change, one that falls well short of what is actually needed: a new kidney that frees patients from devices entirely.
[Other perspectives: The moral case for paying kidney donors]
It is here that the stem-cell revolution of the past 10 years offers a measure of hope. To understand the challenges in growing a kidney from stem cells, it is useful to compare the stem-cell approaches to kidney failure with those for diabetes. Patients with Type 1 diabetes suffer from the failure of a single cell type in the pancreas, called the beta cell. Over the past 10 years, scientists have been successful in generating beta cells in the lab — billions of them — and now the only remaining challenge to cure Type 1 diabetes is find a way to deliver those cells to a patient and keep them alive.
Kidney failure, on the other hand, represents failure of an entire organ comprised of over 30 distinct cell types, all organized in an intricate and complicated pattern. The challenge is not only to grow 30 different cell types, but also how to arrange them in proper orientation. Until two years ago, the prospects for surmounting these challenges appeared slim, despite decades of effort by large teams of scientists around the world.
But recent breakthroughs using human pluripotent stem cells have demonstrated that growing a kidney in a dish may be feasible. Pluripotent stem cells are special in that they possess the ability to differentiate into any cell type in the human body.
By coaxing stem cells to differentiate into two different types, kidney-specific stem cells, then combining them, scientists have discovered that these cells will continue to differentiate on their own, generating a wide variety of cells that are found in a mature kidney. Moreover, the cells pattern themselves into nephrons — the functional unit of the kidney — and these nephrons are structurally quite similar to real nephrons in our own kidney.
This remarkable and surprising advance has, in a short time, changed the way many of us think about the problem of growing an artificial kidney. While still an enormous undertaking, the problem may have a potential solution. Rather than the challenge of generating 30 different cell types, we may only need to develop the two critical kidney stem cells and make sure the conditions in the dish encourage these two cell types to do what they want to do.
A powerful aspect of this human stem-cell approach is that it can be tailored specifically for each patient. Transplant patients generally must take immunosuppressive drugs for the remainder of their lives, to prevent rejection of their kidney by the immune system. This same problem would exist if an artificial kidney were grown in the laboratory using cells from someone other than the patient receiving the kidney.
[Generosity won’t fix our shortage of organs for transplants]
However, we now have the ability to turn any patient’s cells — from skin or blood on the inside of the mouth, for example — into pluripotent stem cells. One can imagine generating patient-specific stem cells from a patient with kidney failure, using these cells to generate a kidney in a laboratory, and then transplanting that kidney into the same patient. In this scenario, there would be no a need for immunosuppression, and limited ethical concerns.
Of course, a number of very substantial challenges remain. The nephrons that can be grown in the dish currently number only in the hundreds, and a human kidney contains about 400,000 nephrons. Furthermore, the nephrons are not attached to blood vessels, and there is no clear way to insert the kidney into a patient’s blood supply. There is also no way to drain the urine that such a kidney would produce. This will require learning how to grow the drainage system — ureters — that could then be attached to the patient’s bladder.
I was formerly skeptical about the prospects for growing a kidney, but the developments over the past two years have convinced me that this could be a viable option. Realistically, we are still probably 15 to 25 years away from success, so it remains important to pursue other avenues to increase the pool of transplantable kidneys. But certainly our patients have reason for cautious optimism. [Read more]
From The Washington Post, Letters to the Editor
Slow healing wounds from dialysis on the arms of kidney recipient Cynthia Decker before her transplant on Dec. 1. (Linda Davidson/The Washington Post)
The Dec. 24 front-page article “The offering” told a poignant story of one person’s gift of life to a stranger. Toni Badinger saved Cynthia Decker from a life on dialysis. Yet there is a subtle tragedy in the tale that other dialysis patients will instantly recognize: “The other patients [on dialysis machines] — almost all gaunt and gray-haired, offered congratulations, speaking to [Ms. Decker] as if she were a fellow prisoner who had just been pardoned.” That is exactly what happened.
I have been on dialysis for four years while awaiting a transplant. Many have been on dialysis for 20 or more years, their bodies ravaged by the side effects. The article was accurate: A high percentage of the 100,000 people waiting for a transplant will die before one is available. The hidden tragedy is that many of these deaths are unnecessary.
An August opinion piece in the New York Times pleaded for a system run by the government in which organ donors were compensated. It would not be perfect, but it would be intended to meet a desperate need while preventing scammers and brokers from profiting. Many doctors also advocate such a system. Why has this not happened? The National Kidney Foundation and other players with big money at stake are opposed.
We all should look forward to the day when Ms. Decker’s joyful outcome is the norm.
Neil Williamson, Greenbelt
Children from the Eagle dialysis ward team up with an animator from the Foundling museum to show the process of dialysis through to kidney transplant.
From Tap Into Summit, Summit, NJ, By GREG ELLIOTT
Dana Henderson, boyfriend of Summit Police Department records clerk Lauren Karsen, gave the gift of life to his girlfriend's mother Karen, donating a kidney in a transplant procedure performed on December 1.
The procedure was a completed success, and Henderson relays, "Karen and I are both doing well. We got to spend Christmas and New Year's together."
Karen has Polycystic Kidney Disease (PKD), a hereditary disease that is passed down through families and in which manyclusters of cysts form in the kidneys, causing them to become enlarged.
What exactly triggers the cysts to form is unknown. The disease is associated with the aortic aneurysms, brain aneurysms, cysts in the liver, pancreas, and testes, and diverticulaof the colon.
Currently, no preventative treatment can prevent the cysts from forming or enlarging, and the disease gets worse slowly. Eventually it leads to end-stage kidney failure, the treatments for which may include dialysis or a kidney transplant.
Henderson, a Muhlenberg College nursing student with two semesters remaining, works full-time as a patient care technician at Overlook Medical Center in Summit. He also volunteers one day each week at the Summit Volunteer First Aid Squad.
Henderson further reports that Dr. Stuart Geffner and the renal transplant team at St. Barnabas Medical Center were "nothing short of remarkable." Henderson explained, "We were both discharged three days post-surgery, and I have been completely pain free for the past three weeks or so. The recovery was much better than my two previous surgeries. In fact, on one or two occasions, I've had people ask me how I was feeling and for a split second I have to remind myself, 'I donated a kidney just a few weeks ago'."
Henderson's blood work post surgery has all been good, he has been cleared to go back to work again starting January 4, and he begins nursing school again January 25.
Lauren's mother Karen's recovery has, understandingly, been much more challenging than Henderson's, but she had been making significant progress. Most importantly, all of her blood work post surgery has also been good.
According to Henderson, there have been no unexpected "hiccups, knock on wood," and Karen has just recently been cleared to drive again. She does have restrictions on the types of places she can be in public because she is immunocompromised, but has a very positive outlook and has "taken everything in stride."
As it currently stands, Karen is expecting to return back to work in March.
"All in all, we couldn't be happier with the outcome of all of this. We all have had a lot to be thankful for this holiday season," said Henderson.
From Yorkshire Evening Post, by Jonathan Brown
Fresh start hoped for defiant Leeds teenager Akash after kidney transplant rejection fears
Akash Suryavansi, from Harehills, with his mum Tina. Picture by Tony Johnson.
A 17-year-old Leeds boy is hoping the New Year will signal a new start for him after a second lifesaving kidney transplant proved a success.
Akash Suryavansi, from Harehills, was born with polycystic kidney disease and after years of dialysis and a transplant from his mother Tina in his youth, his donated organ began to fail in July.
His desperate wait for a second transplant saw his health deteriorate, with 12-hour days of dialysis taking their toll and leading him to suffer a stroke in October.
Doctors eventually gave the teen’s dad Aky the go-ahead to donate one of his kidneys in November but following the complex procedure, Akash’s body began to reject the new organ before Christmas.
Tina revealed that following an anxious few weeks her son appears to have weathered the storm after he was plied with steroids and anti-rejection drugs to rescue his kidney.
“It’s the best Christmas present we could have hoped for,” she said. “He’s drinking normally, he’s got his energy back and he’s looking better and putting weight on. We are just grateful top have come through the last 12 months.”
She explained that Akash is now progressing well at home and is in temporary isolation until March to steer him clear of infection, which is an increased risk due to the nature of his transplant.
When Akash first needed a transplant 11 years ago both parents offered to be donors but Aky was rejected because his blood group did not match. But these ABO-incompatible transplants are now possible with the use of drugs to suppress the immune system.
The average wait for a kidney transplant in Yorkshire is 1,114 days but due to a shortage of donors from ethnic minorities, Akash could have been made to wait a year longer without Aky’s donation.
Tina said: “Next year is going to be a new start – it’s his third chance at life. We’ve had a lovely, big family Christmas this year and Akash is just enjoying being well.”
The family have been major supporters of the YEP-backed Be A Hero campaign, led by LTH, which saw around 27,000 people sign the NHS Organ Donor Register in its first three months this year.
Aiming to tackle a Tough Mudder challenge in August in aid of LTH’s Leeds Children’s Transplant Team, the Suryavansis, who were praised in the YEP Best of Health Awards 2015 for their bravery, are keen to continue to offer their support.
“We want to continue with organ donation awareness and that’s still at the top of our agenda and always will be,” Tina added.
PKD Fundraising
From The Valley Voice, Champlain Valley Vermont
VUHS Teens Set Goal To Raise $6,000 For Polycystic Kidney Disease
As the year winds down the goals for 2016 are being set around the county and the VUHS National Honor Society members have a busy year ahead. The group is determined to help support research for local people battling Polycystic Kidney Disease (PKD) and have set up numerous fundraisers to reach their goal.
First and foremost the teens want to increase awareness of the struggles for people facing this disease and the lack of funding and community understanding. Polycystic Kidney Disease is an inherited disorder that has been diagnosed in 600,000 Americans which causes many cysts to grow in the kidneys and while the cysts are noncancerous they damage the kidneys and can lead to kidney failure. The cysts are different sizes and grow as they accumulate fluid and in addition to the kidneys which in some people require a transplant, the cysts are also found in the liver and other parts of the body. Complications of this disease include high blood pressure. While the disease can vary greatly in each person at present it is not curable. New research is working on possible cures but it is costly and not many Americans even know about the disease or how it impacts families.
“We are raising money for PKD research to honor a NHS member and her family,” shared NHS president Nathan Rowell. “We are performing numerous fundraisers as well as accepting sponsors and donations to go toward PKD research. We are really hoping to raise both funding and awareness.” The group plans on a media campaign in and outside of Addison County and hopes to draw sponsors for their participation in the Polar Bear Challenge Obstacle Race taking place on Saturday, February 6th in Benson, Vermont.
Rowell and his fellows NHS members are hoping that community members might consider making a donation or if there is a small job that the group could do for donation toward the cause, please contact Rowell at nrowell@anwsu.org or the faculty adviser at lkayhart@anwsu.org . “When my mother had breast cancer many members of our community helped my family stay strong by bringing us warm meals and smiles. That kind of community needs to be sustained and focused to help those dealing with PKD.” Research is often slow but the recent discovery of a new gene editing technique is just one of many different areas where research is slowly beginning to unravel the mysteries of the genes that bring PDK into the lives of so many Vermonters and Americans.
So check your list of projects and see if you have a project that could be handled by willing hands or maybe consider making a donation to help the teens reach their goal. But most importantly please get on the web and read up on this disease that impacts so man.
I have been on dialysis for four years while awaiting a transplant. Many have been on dialysis for 20 or more years, their bodies ravaged by the side effects. The article was accurate: A high percentage of the 100,000 people waiting for a transplant will die before one is available. The hidden tragedy is that many of these deaths are unnecessary.
An August opinion piece in the New York Times pleaded for a system run by the government in which organ donors were compensated. It would not be perfect, but it would be intended to meet a desperate need while preventing scammers and brokers from profiting. Many doctors also advocate such a system. Why has this not happened? The National Kidney Foundation and other players with big money at stake are opposed.
We all should look forward to the day when Ms. Decker’s joyful outcome is the norm.
Neil Williamson, Greenbelt
Dana Henderson, boyfriend of Summit Police Department records clerk Lauren Karsen, gave the gift of life to his girlfriend's mother Karen, donating a kidney in a transplant procedure performed on December 1.
The procedure was a completed success, and Henderson relays, "Karen and I are both doing well. We got to spend Christmas and New Year's together."
Karen has Polycystic Kidney Disease (PKD), a hereditary disease that is passed down through families and in which manyclusters of cysts form in the kidneys, causing them to become enlarged.
What exactly triggers the cysts to form is unknown. The disease is associated with the aortic aneurysms, brain aneurysms, cysts in the liver, pancreas, and testes, and diverticulaof the colon.
Currently, no preventative treatment can prevent the cysts from forming or enlarging, and the disease gets worse slowly. Eventually it leads to end-stage kidney failure, the treatments for which may include dialysis or a kidney transplant.
Henderson, a Muhlenberg College nursing student with two semesters remaining, works full-time as a patient care technician at Overlook Medical Center in Summit. He also volunteers one day each week at the Summit Volunteer First Aid Squad.
Henderson further reports that Dr. Stuart Geffner and the renal transplant team at St. Barnabas Medical Center were "nothing short of remarkable." Henderson explained, "We were both discharged three days post-surgery, and I have been completely pain free for the past three weeks or so. The recovery was much better than my two previous surgeries. In fact, on one or two occasions, I've had people ask me how I was feeling and for a split second I have to remind myself, 'I donated a kidney just a few weeks ago'."
Henderson's blood work post surgery has all been good, he has been cleared to go back to work again starting January 4, and he begins nursing school again January 25.
Lauren's mother Karen's recovery has, understandingly, been much more challenging than Henderson's, but she had been making significant progress. Most importantly, all of her blood work post surgery has also been good.
According to Henderson, there have been no unexpected "hiccups, knock on wood," and Karen has just recently been cleared to drive again. She does have restrictions on the types of places she can be in public because she is immunocompromised, but has a very positive outlook and has "taken everything in stride."
As it currently stands, Karen is expecting to return back to work in March.
"All in all, we couldn't be happier with the outcome of all of this. We all have had a lot to be thankful for this holiday season," said Henderson.
Akash Suryavansi, from Harehills, was born with polycystic kidney disease and after years of dialysis and a transplant from his mother Tina in his youth, his donated organ began to fail in July.
His desperate wait for a second transplant saw his health deteriorate, with 12-hour days of dialysis taking their toll and leading him to suffer a stroke in October.
Doctors eventually gave the teen’s dad Aky the go-ahead to donate one of his kidneys in November but following the complex procedure, Akash’s body began to reject the new organ before Christmas.
Tina revealed that following an anxious few weeks her son appears to have weathered the storm after he was plied with steroids and anti-rejection drugs to rescue his kidney.
“It’s the best Christmas present we could have hoped for,” she said. “He’s drinking normally, he’s got his energy back and he’s looking better and putting weight on. We are just grateful top have come through the last 12 months.”
She explained that Akash is now progressing well at home and is in temporary isolation until March to steer him clear of infection, which is an increased risk due to the nature of his transplant.
When Akash first needed a transplant 11 years ago both parents offered to be donors but Aky was rejected because his blood group did not match. But these ABO-incompatible transplants are now possible with the use of drugs to suppress the immune system.
The average wait for a kidney transplant in Yorkshire is 1,114 days but due to a shortage of donors from ethnic minorities, Akash could have been made to wait a year longer without Aky’s donation.
Tina said: “Next year is going to be a new start – it’s his third chance at life. We’ve had a lovely, big family Christmas this year and Akash is just enjoying being well.”
The family have been major supporters of the YEP-backed Be A Hero campaign, led by LTH, which saw around 27,000 people sign the NHS Organ Donor Register in its first three months this year.
Aiming to tackle a Tough Mudder challenge in August in aid of LTH’s Leeds Children’s Transplant Team, the Suryavansis, who were praised in the YEP Best of Health Awards 2015 for their bravery, are keen to continue to offer their support.
“We want to continue with organ donation awareness and that’s still at the top of our agenda and always will be,” Tina added.
PKD Fundraising
From The Valley Voice, Champlain Valley Vermont
VUHS Teens Set Goal To Raise $6,000 For Polycystic Kidney Disease
As the year winds down the goals for 2016 are being set around the county and the VUHS National Honor Society members have a busy year ahead. The group is determined to help support research for local people battling Polycystic Kidney Disease (PKD) and have set up numerous fundraisers to reach their goal.
First and foremost the teens want to increase awareness of the struggles for people facing this disease and the lack of funding and community understanding. Polycystic Kidney Disease is an inherited disorder that has been diagnosed in 600,000 Americans which causes many cysts to grow in the kidneys and while the cysts are noncancerous they damage the kidneys and can lead to kidney failure. The cysts are different sizes and grow as they accumulate fluid and in addition to the kidneys which in some people require a transplant, the cysts are also found in the liver and other parts of the body. Complications of this disease include high blood pressure. While the disease can vary greatly in each person at present it is not curable. New research is working on possible cures but it is costly and not many Americans even know about the disease or how it impacts families.
“We are raising money for PKD research to honor a NHS member and her family,” shared NHS president Nathan Rowell. “We are performing numerous fundraisers as well as accepting sponsors and donations to go toward PKD research. We are really hoping to raise both funding and awareness.” The group plans on a media campaign in and outside of Addison County and hopes to draw sponsors for their participation in the Polar Bear Challenge Obstacle Race taking place on Saturday, February 6th in Benson, Vermont.
Rowell and his fellows NHS members are hoping that community members might consider making a donation or if there is a small job that the group could do for donation toward the cause, please contact Rowell at nrowell@anwsu.org or the faculty adviser at lkayhart@anwsu.org . “When my mother had breast cancer many members of our community helped my family stay strong by bringing us warm meals and smiles. That kind of community needs to be sustained and focused to help those dealing with PKD.” Research is often slow but the recent discovery of a new gene editing technique is just one of many different areas where research is slowly beginning to unravel the mysteries of the genes that bring PDK into the lives of so many Vermonters and Americans.
So check your list of projects and see if you have a project that could be handled by willing hands or maybe consider making a donation to help the teens reach their goal. But most importantly please get on the web and read up on this disease that impacts so man.
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