Sunday, December 11, 2016

PKD Life: Understanding Dialysis, Understanding Kidney Transplants, PKD Research: Regulus ADPKD Trial, Gift of Life: Sacramento, Greenville, MI, Wales

Understanding Dialysis 

From HJNews.com by Caroline Shugart

Unraveling the mysteries of kidneys, dialysis


To many people, kidneys are a complete mystery, except to produce urine. Do you understand the physiology or anatomy of your kidneys? So what happens when your kidneys fail?

Imagine this scene. You are sitting in your physician’s office, waiting for the results of a number of exploratory tests. You hear the words, “I have some bad news for you.” You hold your breath, and your physician explains, “You’re in kidney failure.” Your anxiety level is off the charts. The conversation includes words like potassium, uremia, edema, transplant, and irreversible.

Then you are told, “You need to start dialysis.” You ask, “Dialysis? What is dialysis?” Little do you realize how this will change your life. I know. I’ve worked in a dialysis clinic for over 15 years.

Currently, over 468,000 people in the United States are on dialysis. Most patients come to a clinic, typically three times a week, and are hooked up to a blood-filtering machine for an average of three to four hours each day. Adding travel and the process of being connected and disconnected to a machine, the time spent in a center can be the major part of your day.

The average life expectancy on dialysis is between five and 10 years, although patients occasionally live over 15 years on dialysis, depending on other health issues and the management of meals, physical activity, and medications.

The cost of one year of dialysis is about $80,000. With 468,000 people on dialysis, that’s a lot of money! Most patients can’t even begin to cover the cost of treatments, or other needed surgeries, medications, and emergent issues, so Medicare is available for people of all ages with permanent kidney failure requiring dialysis. Medicare ends up spending about $31 billion yearly just on dialysis treatment.

Dialysis is an unusual procedure. Nurses or certified technicians access a person’s blood supply, either through a fistula or a central line. A central line catheter is usually placed into the vena cava, in the chest, which then dumps directly into the heart. A better access is called a fistula, which is created by connecting an artery to a vein. Over about six weeks, the high pressure system of the artery develops and improves the strength of the vein. Then needles can be used to connect the patient’s blood supply in this vein, through tubing, to a dialysis machine.

A dialysis filter, or artificial kidney, is comprised of thousands of tiny straws. Each straw is a semi-permeable membrane. On the one side of the membrane is the blood supply and on the other side of the membrane is a fluid called the dialysate. Using the principle of diffusion, small solutes such as sodium and potassium, and waste products such as nitrogen and urea, pass from the blood into the solution, going from a higher concentration to a lower concentration. Excess water is pulled out of the blood using a vacuum pressure pump. The process needs to be monitored closely throughout the treatment cycle.

Your kidneys work 24/7, filtering about 50 gallons of blood daily, excreting about a quart of urine, and reabsorbing the rest. However, the kidneys don’t just regulate fluid balance and get rid of waste products. Kidneys also have important functions to make red blood cells, regulate blood pressure, protect your bones, and keep your blood from becoming too acidic. When your kidneys fail, dialysis only does about 5 to 10 percent of what your kidneys normally do for you. It’s a lot more than just producing pee. That’s why losing kidney function really impacts your health.

One third of all kidney failure is caused by diabetes and uncontrolled blood sugar levels. Circulating sugar molecules act like shards of glass, destroying delicate kidney cells called nephrons. Twenty-nine million Americans currently have diabetes, and seven million of them don’t know it. Millions more have a pre-diabetic condition, which generally advances to full-on diabetes (unless preventive measures are taken).

The second major cause of kidney disease is hypertension. Thirty-two percent of all American adults have hypertension and, unfortunately, half of them don’t know it. However, that excess pressure causes irreversible damage to the nephrons. And your kidneys work really, really hard. Some people can lose 90 percent of their kidney function without expressing any signs or symptoms. That’s why it is often a surprise when you are diagnosed with kidney failure. Your kidneys were working until they just couldn’t function anymore.

Unfortunately, the future health of Americans is a dim landscape. Of children born today, it is estimated that one out of every three children will get diabetes in their lifetime. Diabetes directly follows the obesity epidemic.

If I can leave you with one message, it is the power of knowledge. Protect your health NOW. Here is what you can do. You can maintain a healthy body weight by eating a plant-based, whole foods meal plan. You can drink water instead of sugary soda and juice. You can exercise every single day, as if your life depended on it (because it does). And you can know your numbers: your blood pressure, your blood sugar, and your kidney function.

Protect your health by protecting your kidneys. Live Well to Be Well.




Understanding Kidney Transplants

From ZeeNews, India, By Salome Phelamei

Kidney transplant: Who can have it? Procedure, risks and complications!



External Affairs Minister Sushma Swaraj, who is currently undergoing treatment for kidney failure at AIIMS, is likely to recieve a transplant next week.

According to hospital sources, the process required for pretransplant has been completed with the organ being harvested from a living unrelated donor.

Here are some key facts you need to know about kidney transplantation or renal transplantation.

What is a kidney transplant?

A kidney transplant is a surgical procedure in which a healthy kidney from a live or deceased person is transferred to someone whose kidneys no longer function. In other words, it is the organ transplant of a kidney into a patient with end-stage renal disease.
What are the common causes of end-stage renal disease?

Diabetes, high blood pressure, chronic glomerulonephritis - an inflammation either of the glomeruli or of the small blood vessels in the kidneys - polycystic kidney disease, are some common causes of end-stage renal disease.

Who can have a kidney transplant?

People with chronic kidney disease who meet certain criteria of kidney function and those on dialysis can have one, regardless of their age. Doctors will also carry out some evaluation to determine whether the transplant would be safe and beneficial for the patients. The transplant team will also check you for other serious conditions, cardiovascular disease, including chronic infections and cancer.

Different types of kidney transplants

There are two types of kidney transplantations depending on the source of the donor organ. They are-

Living-donor transplantation -- a patient gets a kidney from someone who is still alive. A living donor may be someone in your immediate or extended family, but occasionally a stranger.

Deceased or non-living-donor transplant – a person with kidney failure gets a kidney from someone who is dead but has chosen to donate his/her organs upon death.

What are the risks involved in transplantation?

There are a number of risks associated with kidney transplantations although rates of serious complications have fallen sharply in last few decades. The risks of a kidney transplant include:

Bleeding
Blood clots
Failure of the donated kidney
Rejection of the donated kidney
Infection
Heart attack
Stroke
Death

Perhaps, following a healthy lifestyle - such as eating a healthy diet, not smoking, keeping body weight in check, taking steps to reduce infections - after a kidney transplant is critical for minimising the risk of complications.

Although a kidney transplant is the most successful treatment for kidney failure, there are no 100% guarantees. Since kidney transplantation is a life-extending procedure, a person who receives a transplant may live 10 to 15 years longer than if kept on dialysis.




PKD Research

From Fierce BioTech, by Phil Taylor

Regulus adds two more projects to pipeline as it works to get lead hep C drug back on track

MicroRNA specialist Regulus has bulked up its pipeline with two new clinical candidates for liver and kidney diseases that could start human trials next year.

The two new micro RNA (miRNA) drugs—Regulus' specialty—are a drug to treat impaired bile flow (cholestasis) codenamed RGLS5040 and RGLS4326 for autosomal dominant polycystic kidney disease (ADPKD), both of which are expected to start trials before the end of 2017.

The company is keen to show that it has pipeline depth beyond RG-101, its hepatitis C virus candidate currently subject to an FDA-mandated clinical hold after serious adverse events were seen in a phase II trial. The two new drugs were highlighted at the firm's R&D event for investors yesterday.

Cholestasis therapy RGLS5040 will target diseases like primary biliary cholangitis (PBC)—which has two approved treatments—as well as primary sclerosis cholangitis and congenital disorders like Alagille syndrome which have no current therapies.

Cholestasis typically leads to serious liver damage, and for years the only treatment was ursodeoxycholic acid, which has limited efficacy. In May Intercept picked up an FDA approval for Ocaliva (obeticholic acid), which has been tipped as a blockbuster in PBC alone, with even more potential if its use can be expanded into bigger indications such as NASH, or fatty liver disease.

RGLS5040 has a different mechanism of action from the current drugs, targeting a microRNA called miR-27, and has potential both as a monotherapy and in combination with approved therapies, according to Regulus' director of biology Zhi-Liang Chu.

ADPKD candidate RGLS4326 is also targeting an underserved market with no approved drug in the U.S. and just one therapy—Otsuka's Samsca (tolvaptan)—available for use in the EU, Japan and Canada. Regulus' drug targets miR-17 and seems to reduce cell proliferation and cyst growth in a mouse model of the disease as well as an in vitro model based on human tissue.

The disease is life-threatening and affects around 12.5 million people worldwide. Around 50% of all patients go on to develop end-stage renal disease, putting them on a path towards needing dialysis and potentially a kidney transplant.

The start of trials for the two new candidates will give Regulus five candidates in the clinic alongside RG-101, AstraZeneca-partnered RG-125 for NASH and RG-012 for Alport syndrome, which is being developed with Sanofi's rare disease subsidiary Genzyme. Both RG-012 and RG-125 are in Phase II.

Updating on progress with RG-101, Regulus' CEO Peter Grint said that the company is on track to file its responses to the FDA on RG-101 by the end of the year and is still expecting a verdict from the regulator in the first quarter of 2017.

"Today's announcement of two new drug development candidates underlines the confidence we have in our rigorous targeting and validation process, which we believe should enable us to identify at least one new drug development candidate per year moving forward," he said.




Gift of Life

From The Sacramento Bee, BY ELLEN GARRISON

Their daughter died five years ago. Now they meet the woman whose life she saved.

On New Years’ Eve, two months before she died, Kaylee West told her family that if anything were to happen to her, she wanted to be an organ donor. On Feb. 6, 2011, the 24-year-old El Dorado Hills resident had a brain aneurysm in her sleep.


Linda West broke down as she embraced Jeanne Schreiber at the Golden 1 Center on Tuesday, meeting for the first time the woman whose life was saved by her only daughter’s kidney.

“I guess I should let go now,” she said, holding tight to Schreiber who also was teary eyed.

On New Years Eve, two months before she died, Kaylee West told her family that if anything were to happen to her, she wanted to be an organ donor. On Feb. 6, 2011, the 24-year-old El Dorado Hills resident had a brain aneurysm in her sleep and died.

Her kidneys and liver saved three lives, her corneas gave sight to two people and her tissue went to countless others.

The meeting between Ken and Linda West and Schreiber took place on what would have been Kaylee’s 30th birthday, at the moment she was born – 3:38 p.m. Arranged by Sierra Donor Services, the Wests met Schreiber at the Golden 1 Center because they’re huge Sacramento Kings fans and Kaylee’s favorite color was purple.

“Meeting her today, it just closes the circle,” Ken West said. “We feel like we’ve fulfilled Kaylee’s last wishes. And it’s awesome. It’s bittersweet, it’s not sad. It feels right.”

Schreiber, 60, has polycystic kidney disease, which causes numerous cysts to grow in the kidneys. While on the transplant list, she had two false alerts about available kidneys before Kaylee’s kidney was offered to her.

“(Meeting a donor family) is something you don’t know how to prepare for, it doesn’t happen every day,” she said. “I’m thrilled to meet them.”

They also got to put finishing touches on a floral portrait – a “florigraph” – of their daughter that will adorn a float in the 2017 Rose Bowl parade. Kaylee’s parents, her brothers, Kenny and Alex, and Schreiber carefully added the eyebrows to the portrait.

Kaylee’s parents have spent about 100 hours encouraging people to join the “Donate Life” registry at various events around California. The Wests stressed the importance of having the conversation about organ donation with loved ones. Kaylee didn’t have the pink donor circle on her driver’s license, so her parents wouldn’t have known her wishes if she hadn’t spoken to them about it.

“It’s just to help tell the story – not just our personal story – but the hundreds of thousands of people who are on transplant lists who never get the opportunity,” Ken West said. “That’s the reason I do it. …There’s people out there that the only way they have a chance is by somebody’s decision to be a donor. I think that’s priceless.”

As of a couple weeks ago, there were 2,632 people on the transplant list in the Sacramento region, said Deanna Santana with Sierra Donor Services. [Read more]


Read more here: http://www.sacbee.com/news/local/health-and-medicine/article119320968.html#storylink=cpy


Read more here: http://www.sacbee.com/news/local/health-and-medicine/article119320968.html#storylink=c

From Greenville Daily News, Michigan, By Emilee Nielsen


Patty Crawford and Diane Kuhn are cousins with a bond that goes beyond family into the realm of friendship and deeper than blood.

The two have been lifelong friends as well as relatives and have been there for each other through the years. When Diane needed a change in her life, she moved to California where Patty opened her home and welcomed her.

When Patty needed a kidney transplant in order to survive, Diane had herself tested for transplant compatibility without being asked.

Patty suffers from polycystic kidney disease (PKD), a disorder which causes fluid-filled cysts to grow on the kidneys. If the cysts grow too large or too many, kidney function can start to decline and eventually fail altogether. PKD is a genetic disease that afflicts Patty’s three brothers as well as her father.

Thirteen years ago, Patty found out she had PKD which came as a shock to her. She was tested along with the rest of her family in the 70s and she and her sister were the only ones found not to have the disease at that time.


A SOBERING REALIZATION

Last year, she began to feel nauseated and fatigued. Having the energy to go on about her day-to-day life was difficult and she said it got so bad at one point she had to nap at her desk on her lunch break at work.

“I was always nauseous. I threw up every morning. I had no appetite; lost weight,” Patty said. “Your kidneys do a lot of stuff…that my kidneys weren’t doing. I was anemic because my kidneys weren’t producing red blood cells. And… the cysts can burst. When they burst, that causes havoc in your abdomen area…which is very uncomfortable. It was a lot of things.”

Though it was evident that Patty needed a kidney transplant, she didn’t reach out to her family to see if anyone would undergo blood and tissue typing tests for her. It was her younger brother who made the call to Diane to see is she would be tested.

The typing tests were nothing new to Diane. She had undergone the same ones several years earlier on behalf of Patty’s younger brother; the same brother who reached out on Patty’s behalf last year. There was a problem several years ago and it didn’t work out. For Patty, though, Diane was a match.

“It’s always been about Patty. It’s always been for her. I think it was just meant to be,” Diane said.




From WalesOnLine, BYJAMES MCCARTHY

These people's lives were changed forever through organ donation


Thanks to a law change in Wales, dozens of extra donated organs have become available - and the benefits have been huge

Since an opt-out organ donation system was created in Wales a year ago, dozens more have become available to save lives.

It means adults automatically become donors after death unless they’ve specifically chosen not to in life.

Wales is the only part of the UK to have such a scheme.

The lives of these three people have been changed as a result of kidney donation - that's why they all support Wales' opt-out organ donation system.

Halima Yousuf and her brother Mohammed Yousuf


Cardiff Imam, Mohammed Yousuf, 40, was on a family holiday when he suffered kidney failure. It left him on dialysis three times a week for two years and needing a transplant.

Mohammed’s sister, Halima Yousuf, immediately offered to donate a kidney to her brother.

“When my brother ended up in hospital on holiday to Turkey, he thought it was a bout of food poisoning,” she said.

“He never imagined it to be kidney failure that would leave him on daily dialysis treatment three times a week for the next two years and in need of a transplant operation.

“I’ve seen how transplants can transform patients’ lives through my job as a hospital operation department practitioner.

“So when my brother found himself on the kidney transplant waiting list I immediately put myself forward as a potential living donor.

“I tested positive as a match and we had our operations at the beginning of October 2016.

“Mohammed’s health had deteriorated drastically in the lead up to the operation and he almost completely lost his eyesight.

“Now, thanks to the successful kidney transplant, he is reading books again for the first time in almost a year and we’re both recovering well.

“My brother Mohammed is both a local Cardiff Imam and Cardiff’s first Muslim Somali to receive a transplant.

“He’s now keen to encourage others in our community to opt in as organ donors.

“Organ donation is fully permitted in Islam, as with other major religions.

“There’s a huge need for more donors from the black, Asian and ethnic minority communities in Wales to come forward to fill the shortage and we’d encourage everyone to make time to share their organ donation decision with those closest to them.

“It really does save lives.”

Robin Simpson

Robin Simpson, 58, from Cardiff, was diagnosed with a hereditary kidney disease in 2001.

He had always avoided the subject of donation.

But when he was told a transplant was the only way to keep him healthy, the issue could no longer be dodged.

“I was diagnosed in my 40s with polycystic kidney disease,” he said.

“It took 12 years for my kidneys to deteriorate to such an extent until I was on dialysis four times a day, and the only option left for me was a kidney transplant.

“I was in work in February 2016, and about to go out for lunch, when I got the call to say a suitable match had been found and I had the transplant operation at seven o’clock that same evening.

“The recovery process wasn’t easy. I came down with an infection 10 days after the operation, and spent the next two weeks in isolation. On the last day of isolation however, I woke up feeling better than I had in years.

“Six weeks after the operation, my kidney function was dropping and showing signs of rejection.

“I immediately began treatment through a steroid drip, which was successful, and I was able to continue the recovery process.

“My transplant continues to improve, and I was able to begin a phased return to work in May, after ten weeks off.

[Read more]

No comments:

Post a Comment