March is National Kidney Month, which makes this a good time to learn more about the difference between two kidney disorders — kidney cysts and polycystic kidney disease.

Your kidneys are situated in the back of your abdomen under your lower ribs, one on each side of your spine. One of the important jobs of the kidneys is to clean the blood. As blood moves through the body, it picks up extra fluid, chemicals and waste. The kidneys separate this material from the blood, and it's carried out of the body in urine. If the kidneys are unable to do this and the condition is untreated, serious health problems result, with eventual loss of life.

Two kidney disorders with similar names but different circumstances are kidney cysts and polycystic kidney disease.

Kidney cysts

Kidney cysts are round pouches of fluid that form on or in the kidneys. Kidney cysts can occur with disorders that may impair kidney function. But more often, kidney cysts are a type called simple kidney cysts. Simple kidney cysts aren't cancer and rarely cause problems. Complex cysts, however, need to be watched for changes that could be cancer.

In one large study, about 1 in 10 people had simple kidney cysts, and in people 50 and older, nearly 1 in 5 had simple kidney cysts, according to the National Institute of Diabetes and Digestive and Kidney Disorders.

It's not clear what causes simple kidney cysts. One theory suggests that kidney cysts develop when the surface layer of the kidney weakens and forms a pouch. The pouch then fills with fluid, detaches and develops into a cyst.

Simple kidney cysts typically don't cause symptoms, but if they grow large enough, symptoms may include:

• Dull pain in the back or side
• Fever
• Upper stomach pain

If a simple kidney cyst causes no symptoms and doesn't affect kidney function, you may not need treatment. Instead, your health care professional may recommend that you have imaging tests, such as ultrasounds, over time to see whether your kidney cyst changes. If a simple kidney cyst is causing symptoms, treatment may include piercing and draining the cyst, then filling it with a solution to prevent recurrence, or surgery to remove the cyst.

Polycystic kidney disease

Polycystic kidney disease is an inherited disorder in which clusters of noncancerous cysts develop primarily within your kidneys, causing your kidneys to enlarge and lose function over time. The cysts vary in size and can grow very large. Having many cysts or large cysts can damage your kidneys.

Polycystic kidney disease is one of the most common genetic disorders, affecting about 500,000 people in the U.S., according to the National Institute of Diabetes and Digestive and Kidney Disorders.

Symptoms of polycystic kidney disease can include:

• High blood pressure
• Back or side pain
• Blood in your urine
• A feeling of fullness in your abdomen
• Increased size of your abdomen due to enlarged kidneys
• Headaches
• Kidney stones
• Urinary tract or kidney infections
• Kidney failure

Treating polycystic kidney disease involves dealing with the symptoms and complications in their early stages, including:

• Managing cyst growth with medication.
• Delaying progression of the disease by controlling high blood pressure.
• Lifestyle strategies to help your kidneys stay as healthy as possible for as long as possible, including maintaining a healthy weight, drinking fluids throughout the day, following a low-salt diet and eating less protein.
• Controlling pain.
• Prompt treatment of bladder or kidney infections with antibiotics to prevent kidney damage.
• Preventing obstructive blood clots in the urinary tract by drinking extra fluids at the first sign of blood in the urine.
• Dialysis or a kidney transplant if kidney failure occurs.

Connect with others talking about kidney cysts and polycystic kidney disease, and living with kidney conditions, in the Kidney & Bladder support group on Mayo Clinic Connect, an online patient community moderated by Mayo Clinic.

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Polycystic kidney disease is an inherited disorder where clusters of cysts develop within the kidneys, causing the kidneys to enlarge and lose function over time. The cysts, which are noncancerous sacs containing fluid, vary in size, and they can grow to be large. This disorder can occur in children and adults.

The two main types of polycystic kidney disease, caused by different genetic flaws, are:

• Autosomal dominant polycystic kidney disease (ADPKD). Signs and symptoms of ADPKD often develop between the ages of 30 and 40. In the past, this type was called adult polycystic kidney disease, but children can develop the disorder.Only one parent needs to have the disease for it to pass to the children. If one parent has ADPKD, each child has a 50% chance of getting the disease. This form accounts for most of the cases of polycystic kidney disease. 
• Autosomal recessive polycystic kidney disease (ARPKD). This type is far less common than is ADPKD. The signs and symptoms often appear shortly after birth. Sometimes, symptoms don't appear until later in childhood or during adolescence.Both parents must have abnormal genes to pass on this form of the disease. If both parents carry a gene for this disorder, each child has a 25% chance of getting the disease.

Polycystic kidney disease also can cause cysts to develop in the liver and elsewhere in the body. The disease can cause serious complications, including high blood pressure and kidney failure.

The disease varies greatly in its severity, and some complications from polycystic kidney disease are preventable. Lifestyle changes and treatments might help reduce damage to the kidneys from complications, but long-term interventions, including dialysis or kidney transplant, are sometimes needed.

On this special Ask the Mayo Mom edition of the Mayo Clinic Q&A podcast, host Dr. Angela Mattke is joined by Dr. Christian Hanna, a pediatric nephrologist with Mayo Clinic Children’s Center to discuss PKD in children.

For more information and all your COVID-19 coverage, go to the Mayo Clinic News Network and mayoclinic.org.

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Eric and Micayla Ryan were experienced parents. They had three children already and thought this ultrasound would be as routine as the ones that had come before. They knew what to expect.

Or so they thought.

But instead of reassurance, this ultrasound revealed a problem: cysts on the kidneys of the Goodhue, Minnesota, couple's fourth child. Their doctor arranged for the Ryans to meet with specialists at Mayo Clinic in Rochester, some 30 miles away, to learn exactly what that meant.

After a 2.5 hour ultrasound, maternal-fetal medicine specialists in Rochester gave the couple difficult news. Their baby had bilateral polycystic kidney disease. The diagnosis is usually a death sentence.

"Most babies with this disorder end up without enough amniotic fluid to breathe," Eric says. "If there's not enough amniotic fluid, the baby's lungs can't develop."

Doctors prepared the Ryans for the worst. They were told they'd likely be able to hold their newborn at most for just a few short days.

Despite the grim prognosis, the Ryans held out hope. They decided to find out the sex of their child — a boy — something they'd not done in previous pregnancies.

"It was a way for us to know him," Micayla says. They named their son Gabriel, after the angel who in the Bible told Mary she would become the mother of Jesus. "In the Bible, Gabriel is the bringer of good news," Micayla says.

The name proved a fitting choice. "Gabriel has done nothing but bring us good news," she says.

Reason to believe

The good news began coming almost immediately. At each ultrasound appointment, the Ryans would learn that Gabriel's amniotic fluid was holding strong. He made it to 26 weeks. Then 28. And 31.

At 37 weeks, with just a tiny pocket of amniotic fluid left close to his face, doctors told the Ryans it was time to bring their boy into the world.

Gabriel Ryan was born on March 17, 2020. In spite of the dire predictions, he initially thrived.

"We're so grateful to everyone who took care of Gabriel. Dr. Prieto gave us hope when it was hard to come by. The NICU nurses took care of Gabriel like he was their own."

Micayla Ryan

"He did so well," Micayla says. "He was only intubated for a few hours. His lungs were great. He was able to urinate."

But Gabriel's kidneys were still an issue. An early infection necessitated dialysis. And while he was eventually discharged from the hospital, the Ryans knew they'd be back. Gabriel would need a kidney transplant to survive. But he'd need to gain weight before he could have the life-saving surgery.

"We needed to get him to 10 kilos — about 20 pounds — before he could have a transplant," Eric says. "We were hoping to get him there without having to go back on dialysis."

Kidney for life

Eric had volunteered to donate a kidney to Gabriel. But his kidney was too large. So Gabriel's surgeon, Mikel Prieto, M.D., recommended the Kidney for Life program.

"Eric described it as a 'kidney deal,'" KARE 11-TV reports. "He would donate his kidney, which was too big for his son, and in return, Gabriel would be matched with a donor best suited for his body."

In September 2021, doctors told the Ryans they had a kidney for Gabriel. The organ came from a woman who was donating a kidney on behalf of a friend. Though she wasn't a match for her friend, she was a perfect match for Gabriel. Through Kidney for Life, her gift ensured her friend would also receive a life-saving organ.

Gabriel's transplant took place on Sept. 15. He went home to join his siblings — Isaac, Millie and Mabel — just six days later.

"He's been trying new foods, exploring," Micayla says of life after transplant. "We thought he was happy before, but now it's like a curtain has been lifted."

Gabriel has enthusiastically embraced life on his parents' dairy farm, riding tractors and skid loaders with his dad. He's keeping up with his older siblings and looking forward to becoming a big brother himself this spring.

The Ryans are grateful to everyone who made all of that possible.

"We're so grateful to everyone who took care of Gabriel," Micayla says. "Dr. Prieto gave us hope when it was hard to come by. The NICU nurses took care of Gabriel like he was their own. We had to leave him at the hospital for 56 nights. Our hearts were on the line. We'd come back, and one of the nurses would be holding him. That meant the world to us."

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This story originally appeared on the "In the Loop" blog

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For many patients seeking kidney transplant, obesity is a barrier. Body mass index (BMI) is a traditional criterion for transplant, and a large portion of potential kidney transplant recipients currently have BMIs above the cutoff.

Two physicians at Mayo Clinic in Rochester, Minnesota, are paving the way to transplant for patients with higher BMIs. Patients, like Wells Larsen, who, because of an innovative new program, has new kidneys and a new outlook on life.

Watch: Innovative program enables patients who are obese to get kidney transplants.

Journalists: Broadcast-quality video (3:42) is in the downloads at the end of this post. Please "Courtesy: Mayo Clinic News Network." Read the script.

Wells Larsen is on a path to recovery, and it's a path he never thought he'd be on a few years ago.

At 22 years old, Wells was diagnosed with polycystic kidney disease, something members of his family have also had, including his mother who passed away from the disease.

"I weighed probably at my highest 350-ish pounds," says Wells. "When my kidney function got to right around 20%, I came here looking for a transplant."

A self-described "meat-and-potatoes guy," Wells didn't start taking his health seriously until he was in his mid-30s and his kidney function was declining rapidly.

"But I almost want to say that that ship sailed at that time."

Often, patients whose BMI is too high aren't able to get a transplant because of the higher risks of complications before and during surgery.

While he tried to lose the weight on his own, Wells wasn't able to meet the criteria for a transplant and was made inactive on the transplant waitlist.

"Many programs approach to things like obesity is that when they get a referral and the patient's BMI is outside the criteria for transplant, they just won't work them up," says Dr. Ty Diwan, a Mayo Clinic transplant surgeon who believes obesity doesn't have to be an automatic no for transplant.

"Obesity is becoming a much greater issue every year. So it's not something that's getting better. And, so, we need to figure out a better way to evaluate patients like that."

He, along with Dr. Aleksandra Kukla, a Mayo Clinic nephrologist, helped create a unique new program to help patients with higher BMIs, like Wells, lose the weight necessary to get them to transplant.

"We were able to create that very coordinated, collaborative program. And that's around the time that we reached out to Mr. Larson and helped him go through the program," says Dr. Kukla.

"Through our process, he went and saw the endocrinologist. He went and saw the psychologist and the dietitian," says Dr. Diwan.

Wells was one of the first patients in the new program, which, in his case, included bariatric surgery to accelerate weight loss.

"My recovery was fantastic. And the weight just started melting off," says Wells.

Within six months, he had lost enough weight through not only the bariatric surgery, but also making lifestyle changes when it comes to diet and exercise.

"He lost over 80 pounds, almost in that six-month period," says Dr. Diwan. "I mean, he looks like a different person."

Wells was placed on the active transplant list, and within two weeks, he got the call he never expected he'd get so soon.

"'Hello, Mr. Larson. We have a kidney offer for you. Please call us back.' That rocked my world," says Wells.

Dr. Diwan says Wells is the perfect example of what they're trying to achieve with this new program.

"This is why it's just great. Because we took a patient who was just not even considered a candidate and within six-month time, he's off dialysis with a functioning kidney, normal creatinine. And he's actually going to live a lot longer. And now he's got a kidney, that is going to make him live longer," says Dr. Diwan.

"I'm trying to not look too far ahead, just because I think this year is really about recovery," says Wells. "But, yeah, travel is a big thing for us in general."

Wells and his wife have plans to visit Disney World next December.

"So I'm going to focus on getting my walking mileage up," he says.

For the safety of its patients, staff and visitors, Mayo Clinic has strict masking policies in place. Anyone shown without a mask was recorded prior to COVID-19 or recorded in an area not designated for patient care, where social distancing and other safety protocols were followed.

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In a recent paper published in Cell Reports, Mayo Clinic scientists found that a sensory device on cells determines if a fat cell burns fat or stores it. Understanding the difference may lead to therapies for metabolic disorders, obesity and potentially kidney disease.

"We started this work by studying polycystic kidney disease," says Jinghua Hu, Ph.D., a Mayo Clinic scientist and senior author of the paper. The work is a collaboration between Dr. Hu's lab, which focuses on the sensory antenna of the cell in different human diseases, and the labs of Eduardo Chini, M.D., Ph.D., focused on metabolism regulation; James Kirkland, M.D., Ph.D., focused on adipogenesis and senescence; and Kun Ling, Ph.D.; focused on cancer and signaling transduction.

"After we generated the model to examine our protein of interest, we were caught by the unexpected development of healthy obesity in the mice," says Dr. Hu.

"Healthy" obesity refers to fat accumulation without metabolic dysfunction, insulin resistance, inappropriate fat storage or lipotoxicity. The mice in the model were missing the ability to make FBF1, a protein that operates as the "gate" between a cell and its antennalike structure called primary cilium. This sensory device protrudes from the surface of a group of progenitor cells that will mature into different types of fat cells, or adipocytes, when reacting to their environment. The primary cilium helps a progenitor cell decide on what kind of fat cell type it will become:

White fat cells are the most common in the body, and they store lipids, forming white adipose tissue. If they store too much, these cells can become so big that normal functions are disrupted. Rogue white fat cells are a major risk for obesity- and aging-associated health complications, such as Type 2 diabetes and cancer. Another type of fat is brown adipose tissue. These fat cells break down sugar and fat molecules to create heat, but most adults have little of this kind of fat. A third type of fat cell acts like a hybrid between white and brown fat cells, and, perhaps unsurprisingly, these are called beige fat cells. They can store fat as an energy reserve, but they are also capable of burning extra lipids to prevent the cell from getting too big and becoming dysfunctional. Beige fat cells are found inside white adipose tissue.

"We discovered that the primary cilium determines the fate of fat progenitor cells. By manipulating the function of this tiny device, we could direct the fate of progenitor cells," says Dr. Hu. "We could have an obese mouse not develop into diabetes because we could make white fat tissue contain more beige fat cells and be much healthier."

In general, researchers have found that directing white fat cells to become more beige helps avoid metabolic disruption, and previous research shows that white adipose tissue will gain more beige fat cells after cold exposure or exercise, for example. But the mice in this study simply gained beige fat cells from birth.

Dr. Hu and colleagues found that FBF1 — which acts as a gate to control signal communication between the cilium and the cell — mutes signals that lead to "beiging" of the fat cells. They also found that it blocks off signals to guide progenitor cells to produce more fat cells. By removing FBF1, the signals get through to the cell, and more beige fat cells are produced in white fat tissue. That leads to metabolically healthier fat tissue. With this knowledge of "beiging," the authors hope to expand therapeutic options for conditions related to obesity.

"Understanding the molecular mechanism underlying healthy obesity may reveal therapeutic targets in metabolic disorders and age-related diseases," says Dr. Hu. "At a molecular level, 'bad' fat tissue and misbehaving kidneys may share the same cause, and that's the beauty and fun of discovery science."

In addition to Dr. Hu, authors from Mayo Clinic are Yingyi Zhang, Ph.D.; Jielu Hao, M.D.; Gina Warner; Nino Giorgadze; Yan Huang; Kai He, Ph.D.; Chuan Chen, Ph.D.; Thais Ribeiro Peclat Monteiro, M.D., Ph.D.; Thomas White, Ph.D.; Kun Ling, Ph.D.; Tamar Tchkonia, Ph.D.; James Kirkland, M.D., Ph.D., the Noaber Foundation Professor of Aging; and Eduardo Chini, M.D., Ph.D.

See the full paper for funding information, including support from Mayo Clinic's Center for Biomedical Discovery, and benefactor funding from the Connor Fund, Robert J. and Theresa W. Ryan, and the Noaber Foundation.

• Read "Good Advice on Obesity? Wait for It" to learn more about Dr. Hu and other obesity researchers at Mayo.
• For more on surprise discoveries, read "Model for Rare Cancer Results Instead in Obesity."

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This year, Thanksgiving is a holiday that has more meaning to Jean Austin, 62. Despite the COVID-19 pandemic making 2020 a year many would like to forget, Jean will be celebrating a year made possible thanks to a selfless act on love. But what makes the milestone even more meaningful is that her donor was her son Andrew.

Jean Austin-Danner was in her 30s when she was diagnosed with polycystic kidney disease, a genetically inherited condition that causes cysts on the kidneys to grow and take over kidney tissue until the kidneys no longer function. Outside of periodic blood work and visits with a nephrologist, the Ormond Beach, Florida, resident says it didn’t really affect her life. 

Growing up, Jean's youngest son, Andrew Austin, now 29, never realized his mom had a health condition that would ultimately alter the course of his life. “It was a nonissue,” he says.

Then, in 2018, more than two-and-a-half decades after her diagnosis, Jean’s condition began to worsen. Andrew urged her to come to Mayo Clinic, where he was working in the Office of Diversity and Inclusion. Doctors told Jean she’d likely need to begin dialysis or undergo a kidney transplant. 

The average wait time for a kidney from the national deceased donor waiting list in the U.S. is five years, but there was another option that her care team mentioned: an organ from a living donor.  

And Andrew jumped. “I never thought twice about it,” he says. “I have a bond with my mom that I don’t have with anyone else. I wanted to give my mom a chance to continue living life without the interference of dialysis.”

His mom, however, was a bit apprehensive. “I think donation in any form is one of the more profound gifts one person can give to another," Jean says. "But as my son, I wanted him to be whole and healthy.”

But Andrew is nothing if not persuasive. “You gave me two kidneys. The least I can do is give one back,” he says to his mother.

Eventually Jean agreed. “Once I understood the significance to him of helping extend my life expectancy and quality, I realized I just needed to graciously accept the kidney,” she says.

On Nov. 26, 2019, she did just that.

Watch: Mother and son thankful for gift of transplant.

Journalists: Broadcast-quality video (3:02) is in the downloads at the end of the post. Please courtesy: "Mayo Clinic News Network."

While Andrew’s kidney was accepted by his mother’s body almost immediately, the psychological impact on both mother and son was more significant than either expected. “I have a deep sense of what an amazing gift my son gave me. The fact that someone chose to do this for me is an incredible honor,” says Jean.

And though COVID-19 and some unexpected complications put a damper on Jean’s plans for 2020, she and Andrew are finding opportunities to celebrate. The pair marked their recent birthdays together and will commemorate the one-year anniversary of the transplant on Thanksgiving together.

“I try to make each day count,” says Jean.

____________________

Related information:

• Learn more about kidney transplants.
• Read about the Mayo Clinic Transplant Center.
• Connect with others talking about transplants on Mayo Clinic Connect.
• Explore Mayo Clinic in Florida.
• Request an appointment.

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ROCHESTER, Minn. — Patients with large polycystic kidneys in need of a kidney transplant can have their diseased kidneys safely removed laparoscopically at the same time as their transplant surgery. That is the finding of a Mayo Clinic study recently published in the American Journal of Transplantation.

Mikel Prieto, M.D., a transplant surgeon and the study's senior author, began offering this dual laparoscopic procedure to polycystic kidney disease patients six years ago. The study results confirm that this all-in-one surgical approach is a safe and viable option for these patients.

"Some patients with polycystic kidney disease have two big problems. The first one is that their kidneys do not work and they need a kidney transplant. The other one is that they have very large kidneys that can cause pain and other problems," Dr. Prieto says. "If you fix one problem with the transplant, you still have the other problem to fix. It's very unsatisfying for patients who can be miserable with these kidneys to be told they will need to wait six months after the transplant to have them removed."

Watch: Dr. Prieto discusses dual kidney surgery and the study.

Journalists: Broadcast-quality sound bites with Dr. Prieto are available at the end of this post. Please courtesy: "Mikel Prieto, M.D. / Transplantation Surgery / Mayo Clinic"

Polycystic kidney disease is an inherited disorder that causes clusters of cysts to develop primarily within the kidneys. As these fluid-filled cysts grow larger, they damage the kidneys, which can ultimately lead to kidney failure. These kidneys can sometimes reach a very large size significantly impairing a patient's quality of life. An estimated 600,000 people in the U.S. have polycystic kidney disease, according to the National Kidney Foundation.

The study compared the results of 51 transplant patients who had the dual surgery versus 97 patients who had only a living donor kidney transplant between January 2014 and October 2019. Researchers discovered that the kidney function for both groups of patients after undergoing surgery was the same. The risk of complications for both groups was also the same at 2%.

Patients who had the dual surgery needed to be hospitalized an average of four days post-surgery versus three days for those who had the kidney transplant alone. Researchers found that patients who had the dual surgery were more likely to need additional care immediately after the surgery. However, the long-term outcomes for both sets of patients were comparable.

"This study shows that the removal of both kidneys laparoscopically and a living donor transplant at the same time can be done successfully and safely without a significant effect on kidney function," Dr. Prieto says.

Co-authors ― all from Mayo Clinic ― are Nitin Abrol, M.B.B.S.; Andrew Bentall, M.B., Ch.B., M.D.; and Vicente Torres, M.D., Ph.D.

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About Mayo Clinic
Mayo Clinic is a nonprofit organization committed to innovation in clinical practice, education and research, and providing compassion, expertise and answers to everyone who needs healing. Visit the Mayo Clinic News Network for additional Mayo Clinic news and Mayo Clinic Facts for more information about Mayo.

Media contact:

• Heather Carlson Kehren, Mayo Clinic Public Affairs, newsbureau@mayo.edu

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Ah, Father's Day. The day we shower the dads in our lives with the thanks, appreciation and ties they deserve. This year, Ricky Sanden put all of our collective showering to shame when he gave his dad ... a kidney. "I don't know if I'll be able to top this one," Ricky tells the Rochester Post-Bulletin. "Expectations better not be high."

As the P-B reports, Ricky's life-saving Father's Day gift came about two years after Robert was placed on the waiting list for a kidney. Polycystic kidney disease, which he'd been fighting for more than a decade, had taken a toll on his kidney function. The paper reports Ricky's sister, Cassie, had planned to go through the living donor testing process at Mayo Clinic, but when that fell through, Ricky stepped in.

Read the rest of the story.

________________________________________________

This story originally appeared on the In the Loop blog.

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On the next Mayo Clinic Radio program, Katherine Zeratsky, a registered dietitian and nutritionist at Mayo Clinic, will discuss juicing, lectins and other diet trends. Also on the program, Dr. Fouad Chebib, a nephrologist at Mayo Clinic, will explain polycystic kidney disease. And Dr. Dawn Davis, a dermatologist at Mayo Clinic, will discuss diseases of the hair.

Here's your Mayo Clinic Radio podcast.

The post Juicing and lectins / polycystic kidney disease / diseases of the hair: Mayo Clinic Radio appeared first on Mayo Clinic News Network.

"Owner of the world's largest kidneys" was never a title Gene Okun wanted to have. Today, thanks to a living donor and a Mayo Clinic surgical team, he no longer does.

Gene Okun's kidneys had to go. They were big. They didn't work. And they were ruining his life.

"My stomach's so big that it affects me physically in everything I do — from waking up in the morning with morning sickness to trying to find the right seat in a restaurant or airplane because I don't fit," Gene told Mayo Clinic's In the Loop blog in August 2017 of his two 50-pound kidneys — some of the largest doctors have ever seen. "And even though it looks like I do, I can't eat very much food because there's very little room in there. Sleeping at night is also a challenge."

Gene’s kidneys had been posing problems for him ever since he was diagnosed with polycystic kidney disease. But he refused to take his diagnosis lying down. He assumed an active role in monitoring his kidney function and in finding a living donor for a kidney transplant. He also began visiting transplant centers around the country to see which one would be the best fit for him. That exhaustive search came to a fruitful conclusion when Gene met Mikel Prieto, M.D., a transplant surgeon at Mayo Clinic's Rochester campus.

"He's a gentle man who's humble yet very knowledgeable, and he's been doing this for such a long time," Gene says of Dr. Prieto. "He sat down with me and described exactly how he'd do my procedure and then ran through some of the complications we could run into. He didn't just sit there and tell me everything was going to be great, and that was something I appreciated."

Together, Gene and Dr. Prieto crafted a plan to get rid of Gene's enormous kidneys and set him on the path to a healthier, happier future.

A series of challenges

The size of his kidneys made Gene's situation complex. Healthy kidneys are usually about the size of a human fist. Both of Gene's kidneys had grown four to five times larger than a football due to his disease. That presented a unique challenge for Dr. Prieto.

"He's not going to have a lot of room to see what's going on in there," Gene said before the transplant. "It's going to be an interesting situation for Dr. Prieto, that's for sure. If nothing else, I appreciate his willingness to give it a shot."

Before that could happen, Gene needed to find a donor. He took a proactive approach to doing so by launching a social media campaign and online video series called Gene's Big Dumb Kidneys. Not only did Gene want to showcase what daily life was like for him and call attention to his own need for a transplant, he also wanted to raise awareness for others.

"We thought the whole idea of using comedy would be much better than just saying, 'Hey, Gene's really sick. Gene needs a kidney.' Because some people glaze over that."

Gene Okun

"We thought the whole idea of using comedy would be much better than just saying, 'Hey, Gene's really sick. Gene needs a kidney.' Because some people glaze over that," Gene says. "We tried to find a way to make all of this humorous and, while not making light of a serious disease, making light of the situation that I myself am in, and then use that to hopefully lead viewers down a path to living donation. That gets serious pretty quickly."

For a while it seemed to be working. The online campaign and Gene's own efforts put him in contact with several potential living donors. But those possibilities fell through.

"I was grateful to meet quite a number of potential donors," Gene says. "But unfortunately, of the initial potential donors, they either didn't make it through the initial medical screening, or they had family objections to doing so."

A friend in need

Watching all of this happen was one of Gene's oldest and dearest friends, Bill McNeese. "I think, initially, he thought I was going to be able to find a donor on my own," Gene says. "But when that wasn't happening fast enough, he stepped in."

Bill volunteered to be Gene's donor. At first, it looked as though Bill's test results would mirror those of other disqualified donors, due to his weight and other medical considerations. But after 10 months of diet and exercise, Bill tried again.

"He ended up losing 50 to 60 pounds and was no longer in need of any potential prescriptions," Gene says. "At that point, my doctors at Mayo felt like he might be a good candidate. We flew to Rochester together so Bill could go through three days of testing."

"I almost don't have words to describe how amazing it felt to find out Bill was qualified to be my donor." 

Gene Okun

Bill turned out to be an excellent fit. "He basically could have been a brother or a sister to me in terms of being a match," Gene says. With Bill approved to be Gene's donor, the transplant was scheduled for June. Gene was overwhelmed with emotion.

"I almost don't have words to describe how amazing it felt to find out Bill was qualified to be my donor. We're great friends and really more like brothers," Gene says. "By him doing this for me, he allowed me to avoid dialysis. Moreover, to end up getting a kidney from someone I know so personally just made it that much more special because Bill really cares for me, and I really care for him." 

An excellent outcome

Before Gene could get Bill's kidney, Dr. Prieto and his surgical team needed to remove Gene's own massively enlarged and underperforming kidneys. It was a slow, tedious process that took longer than anticipated.

"Originally, we'd planned on a 6- to 7-hour surgery, but it ended up taking about 12 hours just because my kidneys were so big, and the way Dr. Prieto does it, laparoscopically, is a very unique procedure," Gene says.

The procedure began with Dr. Prieto making a 4-inch incision in Gene's abdomen. Through it, he then removed 19 liters of fluid from the kidneys so that they could be made small enough to slide out through the incision.

"I feel very blessed that I was able to have the kind of a care team for my transplant that I did." 

Gene Okun

But even though it took some time, the transplant went well. "I was literally up and walking the next day," Gene says. "I was out of the hospital and in the Gift of Life Transplant House within three days. That was just amazing to me, and the story was even better for Bill. He was out of the hospital the next day after surgery."

Dr. Prieto performed both surgeries. "He did a full 12-hour day of kidney removal and transplantation," Gene says. "He's a very amazing surgeon and person with an equally amazing team behind him. I feel very blessed that I was able to have the kind of a care team for my transplant that I did."

A welcome transformation

Since the transplant, Gene's been reveling in his newfound quality of life. "I'm doing very well now," he says. "I can take a full breath now, which I could not do before the transplant. My appetite is back, as well. I'm also now sitting in booths in restaurants, which I never could before. During my plane ride home from Mayo, I was also able to put the tray table down in front of me, which I'd never been able to do. I just feel generally better. It's an amazing feeling, and everybody who sees me now can't believe the amazing transformation."

It's a transformation that Gene says is only getting better with each passing day.

"Things are much better right now than I ever expected them to be, and I'm just very blessed and happy with the outcome," he says. "I'm so very grateful for everything Bill and Mayo Clinic have done for me. I can't thank them enough."

To show his appreciation, after the transplant, Gene donated his old kidneys to Mayo Clinic to help researchers better understand and treat polycystic kidney disease. He's also redirecting the time and energy he put into finding a donor for himself into creating a new website that promotes living organ donation.

"I don't think a lot of people know or understand that you can donate a kidney to someone while you're still alive, and that you can go on living your same quality of life with only one kidney," Gene says. "I'm now working to change that."

HELPFUL LINKS

• Read more about polycystic kidney disease.
• Learn about kidney transplant at Mayo Clinic.
• Check out the Mayo Clinic Transplant Center.
• Explore Mayo Clinic's Rochester campus.
• Request an appointment.

The post Bidding Farewell to Enormous, Faulty Kidneys appeared first on Mayo Clinic News Network.