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Peritoneal Dialysis Patient Stories

Lamon Caldwell

Lamon Caldwell"You have to go through what you have to go through in order to get to where you’re going to get to." Lamon Caldwell lives by this motto every day. Raised in the south side of Chicago, he wanted to achieve more than what the neighborhood could offer at the time. He went on to attend Portland State University, earning two bachelor degrees. After college, Lamon played semiprofessional football in Oregon and then moved to Florida, where he played with the Arena Football League. Lamon worked hard to earn his success.

Even after achieving so much, nothing could prepare him for his next obstacle. Unbeknownst to him, he had severe hypertension, soon leading to end stage renal failure. In his early 30s, Lamon relied on dialysis to keep him alive.

After six months of in-center dialysis, Lamon was on peritoneal dialysis (PD), a home dialysis treatment that worked better with his lifestyle.

"One advantage of PD is that I can be home and be myself," he says. "Also, PD has helped me maintain a healthy weight. Home dialysis hasn’t changed my life. It’s just a part of my lifestyle. I try to keep an open mind."

Even when he was treating in-center, he kept a positive attitude. "I liked the camaraderie I had with the in-center patients — I was the youngest one there! But I still keep in touch with them," he says.

Lamon has since moved back to Chicago and works as a teen mentor with Chicago Youth Centers and as a football coach at a local high school. He also travels to numerous events across the country to raise awareness about kidney disease by sharing his experience. In October 2011, Lamon received a kidney transplant and so far is doing very well.

When asked where he gets his inspiration from, he doesn’t hesitate to answer.

"After being on dialysis, I find that other patients are my inspiration," says Lamon. "Listening to everyone’s stories is what amazes me. The entire dialysis community is inspiring, including the care providers that play a big role in patients’ lives."

 


Debbie Langston

Debbie LangstonIn 1999, I was diagnosed with polycystic kidney disease (PKD). I thought it wouldn't make a difference in my life for a long time. I was wrong. After only two years, my kidney function declined, and I was told I needed dialysis. I was shocked. My doctor suggested I go to a KEY (Kidney Education and You) class to learn about my options. I went and it was very helpful. That same day, my nurse showed me how hemodialysis and peritoneal dialysis (PD) worked. I decided that I wanted to try PD. It was the best decision I made. For the most part, it was been a very agreeable situation.

When I was at the center, my nurse and those who work there became my family. They do what they can to help make this a very satisfying journey in my life.

I still work full time. I am able to do just about what I want to do. I even go dancing from time to time. I make sure to always follow the procedures that the doctor and nurses have me do. And in 2009, I received a kidney transplant and so far so good! No matter what happens, I will continue to live a gratifying life.


Deirdre Smith

Deirdre SmithDeirdre Smith has a gift for finding the humor in life’s ups and downs. She writes with a sharp wit and her poetry is naturally charming.

As a mother and foster parent, she was overwhelmed to find out that her kidneys had failed and she would need dialysis this year. Suddenly, Deirdre’s world went into a tail spin. Deirdre began in-center hemodialysis but felt it was not letting her be her happy, funny self.

“I acquired a degree of hopelessness sitting there for four hours with an ugly attitude,” said Deirdre, speaking of her experience at a dialysis center. “It just did not fit my desired lifestyle.”

Deirdre learned that peritoneal dialysis (PD) might be an effective form of dialysis treatment for her because it would allow her to continue what she calls her “chosen obligations.” And so far she feels she made the right choice. Deirdre has several job and volunteer duties, and helps with her grandchildren and foster children. Deirdre also has time to take care of a person who needs to visit a doctor frequently.

“I have mobility,” she says. “I have more energy to fulfill my productive lifestyle. The stairs leading to my bedroom are no longer a challenge. I was able to complete my studies in business administration. And I am more conscious about my eating habits. It is not necessarily how much I consume; it is the quality of the food that I eat. I am no longer a hog-dog.”

Is there anything else that PD has allowed Deirdre to do that she never thought she could do again? “I can stop a speeding bullet with one hand. I can leap tall buildings in a single bound,” she jokes.

In a way, Deirdre has been a superhero to many over the years, and PD continues to award her with such an extraordinary status. Her gratefulness can be explained mathematically.

“32+32,” she says. “The 32 reasons why I am not dead added to the 32 reasons that I chose to live. They equal to 64 biological, foster and adopted children that I have raised.”


Katie Siesennop

Katie SiesennopKatie Siesennop is a kidney transplant recipient living in Troy, MO. Before receiving her kidney transplant in December 2007, Katie was on peritoneal dialysis (PD).

Katie had her first kidney transplant in September 1998. However, in 2005, her blood pressure began to rise and no one knew why. A biopsy in August determined that a virus had attacked her transplanted kidney and she would have to begin dialysis.

While on in-center hemodialysis, Katie's blood pressure continued to rise. Her doctor kept adding blood pressure medicines to her care plan until she was taking five different medicines. It was during this time that she had a seizure and her transplanted kidney was removed.

"I had heard of peritoneal dialysis," she said. "Before I considered PD, I would have to come to the center three days a week for four hours at a time [for in-center hemodialysis], but I was scared and didn't want anymore surgeries in order to receive PD. Eight months later, a guy my age came into the center and was switching over to PD, and it struck me that if he could do it, I could do it."

After talking with her doctor, Katie decided to try PD.

"Not long after that, my days were free and my treatments were done by a machine while I slept," she said.

She no longer had to worry about finding a ride to the dialysis center or being home on time to get her son off the school bus, and the best part was that she was able to decrease her blood pressure medicines to only one.


Roma "Lisa" Freeman

Roma Roma "Lisa" Freeman is a peritoneal dialysis (PD) patient. She talks of how her favorite childhood show, "Star Trek," relates to her chronic kidney disease (CKD). This is Lisa’s story.

"As a teenager, I discovered 'Star Trek' and was hooked. The show would arouse my imagination throughout my life.

Before marrying another 'Trekkie,' I wanted to see if I had polycystic kidney disease (PKD) like my father. I did, and the doctor recommended that I not have children. It was a lot to absorb, but we still married.

I had no symptoms of PKD until I developed high blood pressure. Eventually, my kidneys began to fail and I needed to start dialysis. I chose peritoneal dialysis. The surgeon explained the 'alien' technology he would implant into my abdomen. I imagined him as the dreaded 'Star Trek' Borg warning, 'You will be assimilated. Resistance is futile!'

But resistance was futile. I became a Borg. I reported to the Borg Queen (my PD training nurse) for PD training. I was scared, but the Borg Queen continued to reassure me.

After doing PD, I started feeling much better, with more energy and a good appetite. I began to look forward to my visits with my nurse.

My inner-Captain Kirk urged me to continue my volunteer work, community activism and travels with my husband. I am not a Borg. I will not be assimilated; I’m happy and I feel good."


Ken Johnson

"Racing makes me feel free and alive in a way that nothing else does," says Ken Johnson. "Motocross is the most physically-demanding sport that I know."

Ken was an avid motocross rider when he was younger, but his love of the sport tapered off when he started a family. During that time, Ken was diagnosed with IgA nephropathy, a type of kidney disease that causes kidneys to become inflamed. He was 19 years-old.

An IgA nephropathy diagnosis didn’t stop Ken from having a successful career as a steamfitter in San Francisco, a job that requires a lot of physical strength and agility. But on one fateful day in 2006, Ken fell 18 feet down a shaft, enduring a traumatic brain injury. Though he survived, he said he found himself in a very depressed state during the recovery process.

"It was devastating," says Ken. "With a head injury, you can't judge when it'll get better."

Ken JohnsonHe had to overcome post-traumatic stress disorder, sometimes finding himself leaving public places, such as restaurants, because he was overwhelmed by the crowds. After recovering from the injury, Ken began focusing on what was important to him and fulfilling certain dreams, one of which was getting back into motocross.

In 2007, Ken joined the Over The Hill Gang motocross racing club. He pushed himself in the sport enough to win two back-to-back national championship titles. Things were looking good and Ken kept a positive attitude. Then, in the summer of 2012, nearly 30 years after his kidney disease diagnosis, Ken was delivered another hurdle to overcome: he was advised that his kidneys were failing and he’d need to go on dialysis. Ken was told about the various treatment options and he eventually chose peritoneal dialysis (PD) because of his active lifestyle. 

On January 4, 2013, Ken attended his first training session for PD. He says that learning how to perform PD came natural because he related the tubes used for treatment to what he does for a living, which requires constant work with tubes and pipes.

He continues working, clocking in long hours and jokes about getting on his fellow workers’ case for saying that they feel tired.

"I ask the guys, 'Hey, are you keeping up with me? You should, because I'm the one who has treatments [after work],'" he says.

 Although he has experienced kidney disease, a traumatic brain injury and dialysis, Ken says he knows nothing is perfect and his positive outlook will determine his outcome. He said he wonders why he survived but then knows the answer right away when he looks at his kids.

In his spare time, he volunteers as a dialysis patient advocate for Western Pacific Renal Network, LLC (also known as ESRD Network 17).

"I'm the youngest of 10 kids and I was told growing up, 'It's not your position in life but your attitude,'" he says. "If others can gain strength from my story then that helps me keep going—I don’t give up easy and I don’t intend on quitting anytime soon."


Sharon Razor

Sharon RazorIn 1980, Sharon Razor, like many with chronic kidney disease (CKD), endured the heartbreak of learning that her kidneys were failing. Sharon said she lived in denial after her father had passed away only 10 years earlier from polycystic kidney disease (PKD), the genetically passed disease she inherited.

Lucky for her, Sharon was treated by an encouraging physician. He saw her through many years of relatively good health and Sharon made sure to educate herself as much as possible on her condition. But after years of not having to go on dialysis, Sharon’s kidney disease took a turn.

As Sharon’s kidney health began to worsen, she knew dialysis was the only option left. But how would an active retired teacher, volunteer, lover of animals, quilt-maker and frequent bridge-player find the time to go for in-center treatments? The answer: home dialysis.

After an orientation to home dialysis, Sharon began peritoneal dialysis (PD) in October 2006.

"I was apprehensive about learning to do this treatment at home," said Sharon. But after her nurse and the staff at DaVita White Oak in Cincinnati trained her, Sharon’s confidence level rose.

"[DaVita White Oak staff] acted as cheerleaders and friends," said Sharon.

Sharon enjoys a new sense of freedom. She dialyzes 10 hours each night with a cycler so that in the morning Sharon is ready to take on almost anything. "I now feel that I can grab life with both hands! I have the energy to do the things that make life worthwhile."

Through the ups and downs, Sharon has learned that she is in control of her kidney disease and that it no longer controls her.

"I have seen that change, and I feel like the luckiest person in the world," she said. "I know what used to be. And I know how much better our knowledge and treatments are today."

Along with loving friends and family in her support network, Sharon says her DaVita® care team has made all the difference in how she lives on home dialysis.

"My DaVita nurse and staff and my doctor mean the world to me," Sharon said. "Without them, I don’t think I’d have the positive attitude and the hope for tomorrow that I have today. Thank you, DaVita, for walking beside me on this road."


Chris Lewis

Chris LewisJohn Christopher Lewis, better known as Chris, is a former peritoneal dialysis (PD) patient. His situation differs a bit from others who receive home dialysis because Chris is blind. Regardless, he has always lived a life of independence, which earned him a bachelor’s degree in history and part-time employment at the National Hotel in Nevada City, CA. A restricted schedule such as receiving in-clinic dialysis didn’t exactly suit such a lifestyle.

Chronic kidney disease (CKD) disrupted Chris’ freedom over four years ago; it was brought on by glomerulosclerosis. That’s why Chris found great interest when Kathlene Snow, a registered nurse, would hold “PD Awareness Days” at the clinic where he received hemodialysis. After attending the sessions and speaking with his doctor, the self-reliant Chris was approved for PD.

“This modality suited his independence and could possibly free him from hemo and vascular access-related problems,” said Kathlene.

At the time, Chris found that the transition wasn’t easy at first. A non-functioning catheter became entrapped in his bowel, causing him to undergo surgery. Yet with much determination and a natural dry wit, Chris was adamant to receive PD.

Kathlene educated Chris with dexterity exercises, as well as guided him on how to manipulate equipment used for PD, and taught him to be familiar with tubing and the cycler. Chris recorded his readings to audiotape for Kathlene’s assistant to transfer to paper flow sheets.

With the collaboration of his medication delivery personnel, his housekeeper, supportive friends and his self-sufficient spirit, Chris was in charge of his home dialysis.

“He flourished,” said Kathlene. “After the first four to six weeks, Chris was as independent as my other home patients.”

Even more extraordinary is that Chris is now completely off dialysis after his lab results showed strong kidney function. He continues to work part-time and still enjoys listening to music and books on tape.

If Chris had to go back on dialysis, he now knows of the more comfortable home therapy option that helps him continue his independent lifestyle.

Kathlene and Chris’ doctor remain shocked that Chris’ kidneys regained the strength they have today. Because chronic kidney disease is a progressive one and kidneys don’t have the ability to regenerate, Chris’ situation is extremely rare. Kathlene is aware that PD was not a factor in his rehabilitation, but is nonetheless happy Chris’ kidneys became strong again.

“What we do know is that if a patient [like Chris] and his health team make a true commitment…successful peritoneal dialysis can make a big impact on quality of life.”

Peritoneal dialysis cannot be completely ruled out for Chris’ future, since his sudden kidney strength is almost unheard of in the renal world. But Kathlene is glad to know her patient Chris is an expert at administering his home dialysis and remains a positive thinker through it all.


Emilio Tovar

Emilio TovarEmilio Tovar is a home dialysis patient who lives an active lifestyle with his wife in Texas. Here is his story:

"My name is Emilio Tovar and I am a peritoneal dialysis (PD) patient. Selecting home dialysis treatments has been the best choice I have made in managing my care. Together with my wife, Mary Lou, I have performed dialysis treatments at home while still continuing all the activities that I love.

I've been running marathons for more than 40 years, and thanks to DaVita's home program, I continue to run two to eight miles everyday. The DaVita® staff members I work with have been great, working hard to meet the demands of my active lifestyle. Whenever I had any questions or needed assistance, two of my excellent PD nurses have been on hand to help. Offering my wife and me 24/7 on-call assistance, they make my treatment program much easier than I would ever have expected.

I've always loved to travel and with home dialysis, treatments won't stop me from continuing to see new places. Since I started home dialysis, I've visited Yellowstone National Park and have enjoyed such activities as camping, tubing and swimming. By taking my equipment and one week of supplies along for the ride, I've been able to spend my days outside and my nights dialyzing in our motor home.

DaVita' home dialysis team of nurses, dietitians and social workers have given me all the support I need and it has paid off -- not once have I had an infection while working on my ranch or traveling the world. After starting home dialysis, I know that nothing is going to stop me from doing all the activities that I love, with the people I love."


Roman Foronda

Roman ForondaWhenever I tell someone that I'm on dialysis, they look at me like I've been condemned to a death sentence. To be honest, I used to think the same thing, imagining death would be easier than dialysis.

For more than 30 years, I've led and played with the band, "Backstreet" -- and all of a sudden, it felt like my life was upside down, and I worried my new situation would cause me breaking up the band. Despite my initial concerns, home dialysis is my way of life now, allowing me enough freedom to continue playing with my band, traveling and caring for my grandchildren.

The first step in beginning dialysis was to work with my doctor to select a treatment method. I chose peritoneal dialysis (PD) and soon underwent the surgical procedure to implant the tube needed for treatment. Having a tube in my abdomen was foreign to me, and I felt sorry for myself, but fortunately, my perspective changed the day I visited the DaVita dialysis center in Upland, CA.

I've always been a good judge of character and from the time I met my peritoneal dialysis training nurse, I knew I was blessed and everything was going to be alright. With her expertise, patience and compassion, learning how to perform home dialysis seemed so easy. My nurse performed my first PD treatment, patiently explaining everything to me in simple terms I could understand. I expected the treatment to hurt or feel weird, but was pleasantly surprised by how non-invasive peritoneal dialysis can be.

Due to my medical conditions, I see a variety of doctors, including optometrists, podiatrists, heart specialists, and my primary doctor. At each office, there might be one or two staffers who go the extra mile and make me feel at ease. But at the DaVita center in Upland, everyone from the receptionist to the social worker does an exceptional job of making me feel like I'm with family.

I am thankful for PD and the DaVita staff that made my transition to home dialysis worry-free.


Michael Walston

Michael WalstonMichael Walston is a former peritoneal dialysis patient in Bakersfield, CA, and one of the winners of the PD Superstars contest.

Michael Walston is a 32-year-old salesman for a heavy equipment company. When he was told he would have to begin dialysis in August of 2006, he knew that he wanted to do peritoneal dialysis (PD).

“I had done my homework about the treatments and knew that only peritoneal dialysis would work for me because I work full-time and have a lot of things to do in my life,” he said.

Michael’s nephrologist referred him to Bakersfield South Home Dialysis, where his training nurse worked around his daily schedule to teach him how to do PD.

“Because she really understood what my concerns were, I only had to miss one day of work — the day of the surgery to place my catheter,” he said. “I was able to do my training in the late afternoon and early evening so I could call on my clients during the day.”

Michael started out his PD treatment doing manual exchanges or continuous ambulatory peritoneal dialysis (CAPD). During this time, he would do his exchanges at work, in his truck and at home. After doing CAPD for a short time, he learned to use a cycler and began doing continuous cycling peritoneal dialysis (CCPD) at night while he slept.

“In the short time I’ve been on PD, I have been able to attend a major sales meeting in Las Vegas. I’ve spent a weekend in San Francisco to see a 49ers game ... I’ve also been able to go hunting with my buddies and spend time at my cabin in the mountains,” he said. “Being able to do these things has made my life feel pretty normal even if I do sleep hooked up to a machine.”

Michael recently traveled to Munich, Germany, a trip he won because of his sales record.

“Because of the way I’ve been able to do my dialysis, I’ve been able to maintain my place as the top salesman in my division,” he said.

Michael believes having a positive outlook on life is important if you want to stay healthy and maintain an active lifestyle on dialysis.

“My nurse and I have talked about this dialysis several times, and she tells me that my attitude has a lot to do with my success. I guess she is right,” he said. “I always try to keep a positive attitude about everything because that is the best way for me to live.”

Michael received a kidney transplant on November 21 and is doing great.


Richard McClendon

Richard_McClendonWhen Richard McClendon thinks about being on peritoneal dialysis (PD), the one word that comes to mind is "freedom."

"That includes freedom in my diet, the freedom to go to places that others [on in-center dialysis] may not go to and the freedom to be flexible with my treatments," said Richard.

Richard got kidney disease due to complications from high blood pressure. He needed dialysis in 2000 and was put on in-center hemodialysis. Five years later, he was introduced to PD and hasn’t looked back. Richard says he feels healthier and feels more in control of his treatment now that he’s on a home dialysis modality.

If Richard were to talk to in-center dialysis patients about PD, he’d tell them to go for it. He did so himself and found inspiration to better his situation by looking to his oldest brother as a role model.

"My brother is in good health, goes yachting, still married and raised a good family," Richard said. "My brother is remarkable."


William Gamble

William_GambleI was asked by a teammate at the DaVita center to share my personal experiences as a peritoneal dialysis (PD) patient. I started PD in June 2010. Before I began this home dialysis treatment, I went online to review tons of PD literature. I was looking for a treatment modality that would best suit my lifestyle. After conferring with my doctor, he agreed with my choice. I was retired at the time, so I could easily focus on my treatment plan.

I’ve had Type 2 diabetes for more than 40 years. I don’t have a medical background, but I do have four decades of experience dealing with the daily routine of living with diabetes and now dialysis. I will not attempt to cover every detail, but will highlight what I consider to be the most important “Words of Advice.” For people looking into a home dialysis treatment, you might want to think of these as your “things to do” list.

1. Attitude: Always keep a positive attitude; your health is your responsibility, so you must be accountable. Remember that you’re “captain” of your healthcare team, and set short and long term goals for your treatment routine.

2. Organize: Keep good records. Develop a daily routine. Always bring a copy of your medical records to doctor visits and count your supplies and make a list of the supplies you need to replenish.

3. Discipline: Buy a calendar or set reminders on your cell phone to remember your appointments. Go online to sign up for DaVita.com Home Dialysis Digest and LifeLines At Home newsletters. Develop and update your “things to do” list; update family about your progress, and schedule a flu shot.


Ernest Courtier

Ernest CourtierSince March 2011, Ernest Courtrier has been on peritoneal dialysis (PD), a home dialysis treatment that allows him more flexibility with his time.

"Being a double amputee on dialysis has not stopped me from doing what I love," says Ernest. With PD, Ernest has experienced better sleep and a more liberal diet. His treatment times at home let him set his own schedule. He also continues to go fishing, a sport he has always adored.

The New Jersey resident says he’d encourage dialysis patients to look into the many benefits of PD.

"If you like having a flexible lifestyle, I’d recommend peritoneal dialysis."


Robert O'Brien

Robert Obrien Robert O’Brien began in-center hemodialysis in 2002 and switched to peritoneal dialysis (PD) in 2003. He received a kidney transplant in 2004, but had to go back on dialysis in 2005 after battling pneumonia. These days, Robert is back on PD, staying active and enjoying life. He does his PD treatments at night while he sleeps so that he has his days free to do the things he loves, one of which is traveling.

“We love to travel and have made several car trips to Burney Falls and Redding, CA, as well as several weekend trips to nearby locations and two trips to Yosemite,” he said. “For these excursions, we’ve just loaded up our van with our own machine and supplies and had a wonderful time exploring during the day and doing my dialysis while we were sleeping.”

Robert and his wife have gone on other trips farther from home, and everything has always gone smoothly. The two have been to Kansas, Wisconsin, Hawaii, Montana and Oregon, all while doing PD.

Despite Robert going through another medical challenge, his care team encouraged him to still revisit Maui to be with his wife and 20 family members in August 2008. Robert and his wife celebrated their 50th wedding anniversary in paradise.

“Without my nephrologist, Sandy and Melody (the nurses at DaVita) and the benefits of peritoneal dialysis, I know I wouldn’t be feeling as well as I do and definitely couldn’t be making the wonderful trips we look forward to,” Robert said.


Lola Wickstead

Lola WicksteadAlthough Lola Wickstead was born with only one kidney, she went about life the same as someone with two. For the first 53 years of Lola’s life, her single kidney seemed to work fine — until it developed cancer.

Lola underwent a partial nephrectomy, a procedure that removes a portion of the kidney in order to remove a tumor. For three years, Lola showed no signs of cancer. Then in 1992, the cancer came back — that’s when Lola needed a full nephrec

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