Can polycystic kidney disease be reversed? Researchers make diet-based discovery

The Kamloops Kidney Support Group gathers twice a month and we almost always have someone there who has been diagnosed with polycystic kidney disease (PKD) or has a family member with it.

According to the Kidney Foundation of Canada:

PKD “is a genetic disorder that causes multiple cysts to form in the kidneys. Polycystic kidneys become very large, have a bumpy surface and contain many fluid-filled cysts. This can be associated with a number of conditions, including: High blood pressure, urinary and kidney infections, kidney stones, and kidney failure.”

Also from the foundation’s website: “PKD can strike anyone at any time. About five per cent of all people requiring dialysis or kidney transplantation have PKD.”

(That info, and more, can be found right here.)

Last week, though, there was some big news involving PKD.

In a piece headlined ‘Reversing polycystic kidney disease,’ Sonia Fernandez of the U of California Santa Barbara writes:

“Thanks to research conducted by UC Santa Barbara biochemist Thomas Weimbs, postdoctoral researcher Jacob Torres and their team, a solution may be no farther than the end of your fork. Diet, they discovered, could hold the key to treating PKD.”

Until now, PKD, as Fernandez writes, “has long been thought to be progressive and irreversible, condemning its sufferers to a long, slow and often painful decline as fluid-filled cysts develop in the kidneys, grow and eventually rob the organs of their function.”

The only options, at this point, are dialysis or a kidney transplant.

Now, though, scientists believe that they have “identified the specific metabolic process responsible for slowing the progress of the disease” in mice.

As Weimbs told Fernandez: “There’s a way of avoiding the development of the cysts through dietary interventions that lead to ketosis.”

Fernandez added: “You heard that right: Ketosis, the underlying metabolic state of popular diets such as the ketogenic diet, and, to a lesser extent, time-restricted feeding (a form of intermittent fasting), has been shown in the Weimbs group’s studies to stall and even reverse PKD.”

Fernandez’s complete story is right here.

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Kidney donor chosen to take part in Tournament of Roses Parade . . . Philly rapper Freeway talks transplant

I don’t make a habit of watching the annual Tournament of Roses Parade from Pasadena, Calif. But I plan on watching the 131st annual event on New Year’s Day.

Why?

To honour Regina Tanner and all of the other generous folks who have donated kidneys. (Hello, Susan Duncan and Cheryl Vosburgh and Louis (Big Rig) McIvor and so many others.)

Regina, who is from Fresno, Calif., will be in the Parade, walking with the Donate Life Rose Parade float. Regina gave up a kidney in 2016 so that her husband, Cary, could get one via transplant. The two of them ended up part of a paired kidney donation chain that featured 18 people.

There is more on Regina’s story right here.

That piece also includes some interesting facts and statistics regarding organ donation and transplantation.









About pediatric kidney transplants, flu shots, curried turkey casserole . . .

I wrote earlier this week about Ferris Backmeyer, and you may be wondering how in the world someone who is only 2-1/2 years of age is able to undergo a kidney transplant.

Ferris, who lives in Kamloops with her mother, father and two sisters, has kidney disease. She has been doing peritoneal dialysis at home for 18 months now.

Her mother, Lindsey, recently revealed on Facebook that they have been given the OK to

Ferris
Ferris Backmeyer, 2-1/2 years old, needs a kidney transplant. (Photo: Lindsey Backmeyer/Facebook)

look for a living kidney donor for Ferris.

“We have been told the donor process can take just as long as the transplant workup for Ferris,” Lindsey wrote, “so starting the search now is recommended.”

Obviously, Ferris isn’t going to get a kidney from a three-year-old living donor. So let’s look at a few things . . .

First, from the Kidney Foundation of Canada (kidney.ca):

“A living kidney donation comes most often from a family member such as a parent, child, brother or sister. A donor can also be a spouse, friend or co-worker. Or it can be a stranger. A genetic link between donor and recipient, although beneficial, is not always required. This is largely due to improved anti-rejection medications.

“A good living donor candidate is someone who is healthy, well-informed and makes a voluntary decision to donate one of their kidneys. Living donors must be over 18 and usually less than 70 years of age. They must be in good general health . . .”

So if you are older than 18, you are eligible to be a kidney donor.

While it is preferred that donors be under the age of 70, there are stories of donors who have been older. Health, both physical and mental, plays a huge role in donor eligibility, no matter the age.

When it comes to children, it would seem that having a live donor is the best option.

A 1982 report published in The Journal of Pediatrics reached this conclusion:

“We conclude that because of donor availability, capacity for good donor-recipient matching, and minimization of time on dialysis, transplantation of adult kidneys into pediatric patients is preferable to awaiting the relatively uncommon pediatric cadaver donor. We further conclude that the procedure is warranted.”

Despite the passage of time, it doesn’t seem that there has been any change to that conclusion.

Meanwhile, there is this from webmd.com:

“The reason most hospitals suggest an age minimum of 18 for kidney donors isn’t because a young kidney is too small. Studies have shown that a kidney from a six-year-old is all right to transplant into an adult.

“Instead, the main reason is that people under 18 are minors and can’t legally give their ‘informed consent’ proving that they agree to the procedure. Also, some genetic kidney diseases won’t have started to cause symptoms yet in young children and teenagers, so it’s hard to know if their kidneys may be affected by disease. . . .

“Kidneys from younger donors seem to work better over the long term. But people who get older kidneys are just as likely to be alive five years after a transplant as those who receive younger kidneys. Plus, the chances of complications from the procedure, and of organ rejection — when someone’s immune system attacks their new kidney — are the same with kidneys from all age groups.

“The takeaway from these studies is that kidneys from older donors can work, but younger people in need of a kidney may want to consider being matched with younger donors.”

There also is this, from stanfordchildrens.org: “A child older than age two can generally receive an adult kidney. There is usually enough space in the child’s belly for the new kidney to fit.”


Yes, it is that time of the year, again.

I am married to a woman who had a kidney transplant on Sept. 23, 2013. That doesn’t mean she has been cured of kidney disease; there isn’t a cure.

Having had a transplant, she must take anti-rejection medications in order to keep her system from rejecting the foreign object that now lives in the lower right side of her abdomen. Some of those medications — she takes them every 12 hours — are immunosuppressants, so her immune system is compromised.

So, yes, I get an annual flu shot. In fact, I got poked on Friday.

You have no idea how many people who are walking around out there have suppressed immune systems or are unable to get a flu shot for medical reasons.

Here is Nicole Basta of the U of Minnesota, the senior author of a study on “herd immunity,” in a story by Lisa Rapaport of Reuters:

“The more people who are vaccinated in a community, the lower the risk that influenza will be able to spread even if the vaccine does not perfectly protect against the disease.

“Influenza spreads by creating chains of transmission whereby one infected person infects additional people and those individuals infect others with whom they come in contact.”

Rapaport’s story is right here.

Flushot





In Saskatchewan and thinking about being a living kidney donor? . . . Here’s some info for you . . .

Dorothy and I were in Regina the other night to spend time with good friends who lived across the street from us when we lived in the Saskatchewan capital.

Their son, who is experiencing kidney failure and recently began hemo-dialysis, was there, too.

There were a whole lot of questions and answers, and here’s hoping we were able to help.

At the same time, we are hopeful that we were able to start him down the road to a kidney transplant. A friend of his has said that he is more than willing to be a donor in order to help him get a kidney, but neither of them was at all certain about how to begin the process.

So I did a bit of research and found a really good website belonging to the Saskatchewan Health Authority. This site includes an online brochure that features a lot of good information for anyone thinking about being a kidney donor, regardless of their location.

That page is right here and it’s well worth a look.

As well, if you are living in Saskatchewan, and thinking about being a living donor, you may contact:

Saskatchewan Transplant Program

St. Paul’s Hospital

1702 20th Street West 

Saskatoon, SK  S7M 0Z9

1-306-655-5054

Or email: SHAlivingdonation@saskhealthauthority.ca  

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There also is a Regina office:

Kidney Health Centre

235 Albert St. North

Regina SK, S4R 3C2

1-306-766-6477

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There also is a blurb on that site that reads:

“About 90 people in Saskatchewan are currently waiting for a kidney transplant. On average, they will wait 2.8 years for a kidney — that’s 437 dialysis treatments per person. Please offer hope by talking to your family about organ and tissue donation.”

If you are considering being a donor, do the research and make a decision. Someone’s life may depend on it.

Also . . . always remember that there isn’t a cure for kidney disease. A transplant isn’t a cure, but it does allow the recipient to have a much better quality of life.




A recipient and her best friend — joined at the kidney. . . . To see them together is to marvel

It is after midnight.

The two women sit in the living room in comfortable, soft chairs. One is focussed on a puzzle book — crossword or Sudoku or Kukuru, she does them all. The other is reading a novel.

Rarely do they speak.

They don’t have to talk in order to communicate . . . they are joined at the kidney.

As proof that time waits for no one, more than six years have passed since one of them

DandD 2
Dorothy Drinnan (right) and her best friend, who donated a kidney in order for her to receive one, love being together.

gave up a kidney so that the other could live again.

But their relationship goes back much farther than that, back to the early 1970s when they worked together in a mental health centre, well before people who are much smarter than I am chose to shut it down.

They no longer live in the same community; in fact, they now are separated by more than 1,700 kilometres and a few mountains. No matter. The friendship endures; in fact, now in their 60s, they are closer than they have ever been, seemingly growing even tighter as time races on.

When one of them needed dialysis to help cope with kidney disease, the other was adamant that she would donate a kidney to her friend. The recipient had been diagnosed with kidney disease — it was discovered that she had been born with just one kidney and that it was malformed and slowly starting to fail — more than 30 years before the transplant. Of course, the friend had been saying for more than 30 years that she would donate a kidney when the time came.

And when that time came, she was true to her word.

When it turned out that they weren’t a match, she said that didn’t matter; they would enter the Living Donor Paired Exchange Program. She would give up a kidney, but only if her best friend got one.

It wasn’t quite that simple, but that’s exactly what ended up happening.

As luck would have it, they ended up in the same hospital so were able to check on each other in the days immediately after surgery.

The donor never has said much about what she did. In fact, when she was away from home for a while those six years ago, there were friends and neighbours who didn’t have any idea where she had gone or what she was doing.

She has never wanted attention. Whenever the subject of her sacrifice or generosity — or pick any other word — is mentioned, she simply shrugs it off. Without having to ask, she knows what would have happened had the shoe been on the other foot.

And now they try to spend time together twice a year — once in the spring and again on or about the anniversary of the transplant.

A year ago, it was the fifth anniversary, so the donor and her husband drove through four provinces in order to participate in a Kidney Walk with the recipient and her family.

A year later, they are sitting quietly in a living room, each in her own world, but you know they are in each other’s world at the same time. Earlier, they were baking scones and making conversation as they worked together. Their children are married now. There are young grandchildren. There is lots to talk about, including all that comes with advancing age.

The one thing that never is heard is a discouraging word, nor is there ever a disagreement.

No. They aren’t sisters. They are closer than that.


Ebata2019
Dr. Russell Ebata (centre), the entire Ebata family and the staff at Ebata Eyecare Optometry, are big supporters of Kidney Walk Kamloops. When Dorothy and I dropped by to thank them the other day, he was adamant that we pose for a photo. Had I known, I would have worn a suit and tie. 

Yes, there is chaos out there. There also are good things happening. . . . Give this tweet and its thread a read; it will make you feel good. . . .



If you are thinking about being a donor, feel free to call the donor nurse co-ordinator at St. Paul’s Hospital (604-806-9027 or 1-877-922-9822), or email donornurse@providencehealth.bc.ca


Kidney Walk: Of grandparents, grandchildren, good friends and transplants

A couple of former sports writers were walking on Rivers Trail, taking part in Kamloops’ 10th annual Kidney Walk on Sunday, when they were joined by Hugh McLennan.

Just minutes earlier, McLennan had been saluted by organizers, participants and volunteers as one of two honourees for this edition of the Kidney Walk. He had undergone a kidney transplant on Nov. 22, 2019, at St. Paul’s Hospital in Vancouver. His long-time friend, Louis (Big Rig) McIvor, the other honouree on Sunday, had given McLennan one of his kidneys.

McLennan, the host of the Spirit of the West radio show, is well-known in the ranching community in B.C. — he and wife Billie run cattle near Pinantan Lake, northeast of Kamloops. He also is easily recognizable, what with the 10-gallon hat, walrus moustache and cowboy boots.

By now, though, the cowboy boots were gone, replaced by a pair of sneakers.

TammyLouis2
Tammy Mathieu and Louis (Big Rig) McIvor give grandchildren a ride alongside Hugh McLennan on Sunday during the Kidney Walk along Rivers Trail near McDonald Park. (Photo: Murray Mitchell/Murray Mitchell Photography)

It had been apparent early on that McLennan was thrilled to have been selected as an honouree. While doing hemo-dialysis, he had always been more than willing to help out by taking a turn at the microphone and also supplying musical entertainment at past Kidney Walks. He and McIvor also have been quick to promote organ donation and transplantation when given the opportunity.

As thrilled as McLennan was with that honour, though, he wore an even bigger smile as he told the story of a phone call he and Billie had received the previous day.

Their grandson, Reed, who will turn 16 on Nov. 20, is playing midget hockey in Winfield, B.C., which is located between Vernon and Kelowna on Highway 97.

Hugh’s voice was bursting with pride as he talked about the phone call.

A goaltender, Reed’s junior B rights belong to the Sicamous Eagles of the Kootenay International Junior Hockey League. It seems that the Eagles were scheduled to play the host Spokane Braves on Friday and found themselves short a goaltender, thanks to an issue involving a passport.

So . . . a call went out to Reed, who joined the Eagles in time to ride the bus to Spokane. He was looking forward to what he was looking at as a learning experience and expecting to take in the game from the cozy confines of the bench.

Except that the Eagles found themselves trailing, 3-0, just 3:49 into the game. Shortly after, the call came from head coach Ty Gunn: “McLennan . . . let’s go!”

With Reed in goal, the Braves added two more goals and took a 5-0 lead into the third period. It was 6-1 just 1:02 into the final period.

In the end, I’m sure the Eagles will tell you that they simply ran out of time. They lost the game, 6-5, scoring their fifth goal late in the third period.

Reed more than did his job, though, turning aside 39 of 41 shots in 54 minutes 20 seconds, in his junior B debut.

While Hugh was relating the story of a grandfather and his grandson, McIvor and fiancée Tammy Mathieu also were on Rivers Trail. They weren’t alone as they had two grandchildren in tow — or was it the other way around?

Regardless, with grandchildren in the conversation and on Rivers Trail, I couldn’t help but think about what it must mean to Hugh to be able to be part of his grandson’s life. After all, had Louis not given Hugh a kidney almost two years ago, well, who knows?

My wife, Dorothy, received a kidney six years ago Monday — Sept. 23, 2013. Our only grandchild, Kara, turned three in July. Dorothy had done peritoneal dialysis for almost four years before having her transplant. Again, without that kidney, who knows?

When we got home after Sunday’s Kidney Walk, we spent some time on a video chat with Kara.

Grateful doesn’t begin to explain what that kidney means to our family. You can bet it’s the same with the McLennans and anyone else who has needed a kidney and been fortunate enough to get one.

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If you are thinking about being a donor, feel free to call the donor nurse co-ordinator at St. Paul’s Hospital (604-806-9027 or 1-877-922-9822), or email donornurse@providencehealth.bc.ca.



Talking kidneys with Freda, Howard, Dorothy and Jill. . . . Update on Vic Morin’s situation. . . . Kamloops Walk on Sunday

With Kamloops’ 10th annual Kidney Walk set for Sunday, my wife, Dorothy, along with friends Freda and Howard Brown, got together with Jill Sperling of Kamloops TV station CFJC on Thursday. OK, I was there, too.

We met at McDonald Park, the site of the Walk, where we chatted about kidneys, transplantation, dialysis and the Kidney Walk.

Dorothy had her transplant six years ago, after almost four years of peritoneal dialysis. Freda recently began doing hemo-dialysis; she does three runs a week at Royal Inland Hospital. Howard was hoping to donate a kidney to his wife and spent the past nine months undergoing all of the necessary tests. However, one of the tests turned up a kidney stone, so he has been disqualified, at least for now.

There’s all that and more in this piece right here.

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In the TV piece referred to above, Howard Brown points out that if you are considering being a live kidney donor, you shouldn’t wait because the testing process takes some time.

But, at the same time, if the medical team finds any issues with your health, they will be dealt with ASAP. In Howard’s case, he already is being put in touch with a specialist in Kamloops and is hoping to have the kidney stone removed so that he can get back into a process that, hopefully, will end with him being a donor for his wife, Freda.

That brings us to Vic Morin, a friend who lives in the Dallas area of Kamloops and who also is in need of a kidney.

Vic has been a regular at Kamloops Kidney Support Group meetings for a while now, and was preparing to begin peritoneal dialysis (PD) in the near future. That is the same form of dialysis that my wife, Dorothy, did before she was fortunate enough to get a kidney from a live donor.

Because Dorothy had experience with PD, she and Vic have had many conversations over the past months. And we were quite excited to hear last week that he was to have a catheter surgically placed into his peritoneal cavity next week. That meant he was one giant step closer to beginning PD.

(BTW, someone who does PD hooks up to a machine called a cycler and does a fluid exchange seven nights a week while sleeping — toxic fluid out, clean fluid in, to be carried around all day in that cavity.)

Unfortunately, Vic’s kidney function deteriorated so rapidly that he was to begin hemo-dialysis on Friday. However, things now have been moved to Monday. He still is on schedule to have a catheter surgically installed on Wednesday so that he can begin training for peritoneal dialysis.

While all this is happening, the search continues for a live donor.

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One of the reasons that I stopped writing about hockey here and turned mostly to renal-related items is that a lot of education is needed when it comes to kidney disease, dealing with kidney disease, organ donation and transplantation. . . . If I am able to provide enlightening information in this space I will be more than pleased. . . .

A few things you should know . . .

There is no cure for kidney disease. Once you have been diagnosed, that’s it; it doesn’t go away.

A person who has had a kidney transplant isn’t cured. For example, Dorothy takes anti-rejection drugs twice a day in order to keep her system from rejecting the organ that is foreign to her body. Those drugs also suppress her immune system so there are some precautions that have to be taken as she goes through daily life.

Should you choose to be a live donor, you don’t need to be the same blood-type as the person in need of a kidney. Instead, you are able to donate through the Living Donor Paired Exchange Registry. In short, your kidney goes to someone else, but only on the condition that the person you want to help gets one from another live donor. This is how Dorothy got her kidney — her best friend gave a kidney to someone (neither she nor Dorothy have any idea who it went to), and Dorothy got one from someone else. No, we don’t know a name, nor do we have any idea how many donors and recipients were involved in that particular chain.

If you are being tested and an issue with your health is discovered, it will be dealt with ASAP. In Howard’s case, a doctor at the renal clinic at St. Paul’s Hospital in Vancouver got him in touch with a specialist in Kamloops in short order.

A donor will spend a couple of days in hospital — Dorothy’s friend had surgery on a Monday and was released from hospital on Wednesday. It is suggested that a donor take it easy — no heavy lifting, for example — for up to six weeks and then it’s full-speed ahead. I know of one donor who was back to jogging in three weeks.

A donor also will continue to be monitored by the medical community. Should there be serious issues with the remaining kidney, a donor would automatically go to the top of the transplant list.

And, yes, a person is able to live with one kidney.

I would never pressure anyone to be a donor. If you are at least thinking about it, I would only ask that you do some research.

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If you are thinking about being a donor, feel free to call the donor nurse co-ordinator at St. Paul’s Hospital (604-806-9027 or 1-877-922-9822), or email donornurse@providencehealth.bc.ca.

Should you make the call and be asked who will be the recipient, feel free to mention Freda Brown or Louis Victor Morin.

Understand, too, that the people who work in renal clinics are big on privacy — I mean, they are really, really big on privacy. Everything you say or do will be kept confidential.

As well, a donor is able to change his/her mind and walk away at any time during the process.



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Don’t forget that the 10th annual Kidney Walk Kamloops is scheduled for Sunday (Sept. 22) at McDonald Park on the North Shore. . . . We will begin registering folks at 10 a.m.; we will go for a walk at 11.

Larry Read, who is so involved in our community, will be the emcee, again. Hugh KWlogo2McLennan and Louis (Big Rig) McIvor will be in attendance as the honourees for this year’s walk. When Hugh needed a kidney almost two years ago, Louis, his longtime friend, stepped up and gave him one.

As well, the Brock Central Lions Club will be on hand to provide breakfast — pancakes, sausages and coffee — by donation. A year ago, they served more than 100 breakfasts.

The Kidney Walk helps raise awareness about kidney disease and raises funds for important programs and services to help kidney patients in this community and others across BC and the Yukon.

Dorothy will celebrate the sixth anniversary of her transplant on Monday. She will spend part of Sunday taking part in her sixth straight Kidney Walk; she also helps Edna Humphreys and me pull the whole thing together.

If you would like to help out — Vic Morin is part of her support team — you are able to make a donation right here.