Home hemodialysis patient stories
Keith Sawyer
After enduring a failed kidney transplant, six infections with seven central venous catheters (CVCs), and three failed fistulas, Keith Sawyer is finally enjoying home hemodialysis (HHD) with DaVita®.
When Keith’s fourth fistula (with a new surgeon) was successful, his girlfriend, Peg, encouraged him to switch to DaVita and try HHD. “She said, ‘let’s just do it at home. I don’t mind stickin’ ya,’” he laughs. “It’s the best thing I’ve ever done.”
Now every weekday afternoon, Keith sets up his machine in their Chalfont, PA, home. Peg does the cannulation, then works nearby until he’s finished, when the two relax with a small glass of wine. They plan to travel to Hilton Head, SC, in the near future, since he can easily take his equipment along.
“On the regular in-center hemo, I was putting on a lot of fluid and my levels were lousy,” says Keith. “On home hemo, my levels all went down. It’s convenient… I get to drink a little bit more fluid. And I feel so much better!”
Courtney Whitebread
Growing up in Sugarloaf, PA, is funny when you’re last name is “Whitebread.” That’s what Courtney Whitebread points out immediately when she begins to talk about her life. Humor like that — along with supportive family, friends and DaVita home dialysis care teammates — has helped Courtney on her journey with end stage renal disease (ESRD).
At 10 months old, Courtney was diagnosed with hemolytic uremic syndrome (HUS), which led to kidney disease. Courtney has been on in-center hemodialysis, peritoneal dialysis (PD) and had kidney transplants. After her third transplanted kidney failed, HHD was her next treatment option.
“The concept of being able to do hemodialysis in the comfort of my own surroundings was completely new to me and I had no idea how it would pan out,” said Courtney. Once she got into a routine, HHD became a great gift to her.
“Doing my treatments at home has allowed me more freedom. When I had to do treatments in-center, I felt trapped,” said Courtney. “Home hemo allows me to feel physically and emotionally better than in-center, partly because I’m able to do more treatments per week… and partly because I don’t feel useless while doing treatments in a clinic.”
Although HHD has allowed Courtney more liberties, there have been some bumps along the way. “The past year has been difficult at times and I got a few infections and encountered problems here and there that required hospitalization, which clearly isn’t fun for anyone involved.”
But Courtney says she still believes HHD is a home treatment option that works well for her. “There is light at the end of the tunnel, and when things are going well, home hemo allows you to do pretty much anything you’re able to do with functioning kidneys.” As a result, Courtney went parasailing in 2009.
Courtney says her parents have always been her cheerleaders and for that she is forever grateful. She also met someone very special in 2006, something she never thought would happen because of her medical problems. “He inspires me every day to keep going.”
Courtney has no plans of slowing down. She says, “I think the wise fish Dory from ‘Finding Nemo’ said it best: ‘Just keep swimming.’”
John Brinkmeyer
John Brinkmeyer of Houston, has been on dialysis for more than three years. Each week he and his wife, who is his care partner, perform the functions of home hemodialysis (HHD) together. When he was diagnosed with chronic kidney disease, he and his wife chose HHD so that they could maintain the most normal schedule possible and so they could both continue to work full time.
Even though John’s wife is available most of the time, she has to travel for business occasionally. At those times, John utilizes respite care. So rather than dialyzing at home, which he would normally do, John goes into a center for dialysis while his wife is out of town.
John said that respite care is convenient for him and his wife. He utilizes both the DaVita® Med Center Dialysis and the DaVita Med Center at Home centers in Houston. He also said he could see the benefits of using respite care on other occasions, such as in the case of illness, or simply to give a care partner a break from the routine.
“It’s always good to have that option, to know that they are there when you need them,” John said.
He said that it’s also helpful to go to a center to get updated training. For example, he recently went to a center to get training on using a touch pad with his NxStage® dialysis machine. Soon, by using the touch pad, he won’t need to make handwritten flow sheets.
The best thing for John about occasionally using respite care is that it makes him appreciate HHD all the more.
Dan Lucier
Dan Lucier started on dialysis in 2008 after he was diagnosed with light chain deposition disease (LCDD), a rare blood disorder that causes protein to build up in the kidneys. Immediately, he had to begin dialyzing three days a week. Now that he is on home hemodialysis (HHD), he has much more freedom.
“Home dialysis allows me to have a say as to where and when I want to dialyze. It also allows me the possibility of traveling again,” Dan said. Dan said he and his wife are planning to travel from their home in California to Boston to see their daughter graduate from college.
Dan said that with HHD, he can choose to dialyze while watching a Red Sox game at home or while corresponding via email. Since he is creating his own schedule, he can now dialyze five times a week, which has the added benefit of giving him more energy. He uses this extra energy to exercise, coach high school lacrosse and go deep-sea fishing on his 26-foot boat, The Good Fight.
While he is grateful to be on HHD, Dan is also thankful that he had a positive experience dialyzing in-center.
“I have had wonderful care every minute that I spent in a DaVita center,” he said. “The people who work there have a wonderful gift for really caring about people.”
Dan also said that doing HHD would not have been possible without his wife’s constant support. He said that the spouses and family members of patients with HHD are incredibly important.
“Much of the work falls on their shoulders and it is a lot to ask them to give you three hours of each day after their own long day,” he said. “They really have to be a special person as they are giving you a special gift.”
Brad Davern
In 2001, Brad Davern was coughing up blood for two weeks. After the blood tests from the hospital lab came in, Brad’s doctor diagnosed him with a rare condition called Wegener’s disease. The disease damages the kidneys, and led Brad to start dialysis immediately.
Brad began hemodialysis at a center, but soon realized that type of environment wasn’t for him. “The center was a depressing place for me to be.” Brad knew he wanted to take control of his dialysis treatments. That’s when he decided to switch to home hemodialysis.
“I enjoy the comfort of being in my own room. I can have the temperature at whatever I want, and watch movies or TV [while I dialyze].”
Once Brad trained to do home hemodialysis, he pushed forward with his active lifestyle, having been a star athlete in high school and basketball player in college. In 2007, Brad completed his first triathlon. “I’m always up for a challenge, so when the opportunity to participate in a triathlon was presented to me, I jumped at it.” Brad, now 28 years old, is currently training for a triathlon this summer held in Madison, WI.
Because Brad has had to cope with kidney disease, he says staying fit is therapeutic for him. “I’ve always liked to work out because it’s a release for me,” he said. “It’s a time where I can forget about everything that’s going on, including the fact that I have to do dialysis that day or night.”
Brad brought his competitive attitude to the U.S. Transplant Games, a sporting event for athletes who have received organ or bone marrow transplants. He earned a total of 7 medals in two different games. Brad had two different kidney transplant operations, but both times the kidneys were rejected by his body. He remains on the kidney donor waiting list.
Although Brad trains often for various sporting events, he also helps local school children achieve their athletic goals. For the past five years, Brad has coached a grade school basketball team in his neighborhood in Pittsburgh. Brad proudly says the team has garnered three championships in a row.
Brad seems to not believe in limitations because he has kidney disease and is on dialysis. After all, he has been skydiving twice and enjoys riding his Harley-Davidson. Brad said he would like other people with kidney disease who are considering home hemodialysis to not be afraid of giving this treatment modality a chance.
“HHD may seem overwhelming at first, but the nurses teaching you take good care of you and go over everything so it’s easy to understand. Here’s a chance to take your life and your care into your own hands, and who knows you better than yourself?”
Brad says there shouldn’t be stigmas surrounding people on dialysis. So far, it hasn’t stopped him from pursuing his goals and living a full life.
“[I would like people with kidney disease] to not look at dialysis as a barrier, but to look at it as an obstacle to overcome. If you put your mind to something there is no other outcome than success.”
Albert and Jorge Huerta
Jorge and Albert Huerta are brothers who share more than an interest for baseball. Jorge and Albert both have Alport’s syndrome. Alport’s syndrome is an inherited disease of the kidney. The Huerta brothers discovered that they both needed dialysis to treat this type of kidney disease.
Jorge, 33, and Albert, 23, started dialysis treatments in center. Being the active young men that they are, the Huertas wanted to explore their treatment options. The brothers were introduced to home hemodialysis (HHD). Jorge, who has been on dialysis since 2001, said he has experienced a positive change by doing hemodialysis at home compared to the in-center treatments he did before.
“The treatment is different; I feel better,” said Jorge. “It’s more convenient.”
Albert agrees, adding that doing home hemodialysis is more comfortable now. “I have more energy, more time at home and more liberty to do what I want,” he says.
After beginning home hemodialysis, Jorge has found the time to start his own baseball bat-making business. When he did in-center hemodialysis in the past, Jorge found himself sleeping immediately after treatment. Now he has more energy to conduct his business, which keeps him busy most of the day. He also found the time to coach a little league baseball team.
Albert plays baseball and socializes a lot more in his free time. And even though HHD has given him the boost to do what he wants, Albert says he feels more comfortable sleeping now that he does dialysis at home.
The brothers are happy to be given a chance to do home hemodialysis. This treatment option has helped them feel better than when they did in-center hemodialysis. Jorge says people on dialysis shouldn’t give up hope for a normal life. “Keep pushing forward and make it happen.”
Paz Hatcher
“When you love someone, you are willing to make sacrifices for their care,” said David Hatcher, Jr., care partner to his wife, Paz. She has chronic kidney disease (CKD) and has been on dialysis since 2001. She now receives home hemodialysis (HHD). Paz and David are grateful for her transition from in-center treatment to HHD.
Now Paz has more time to socialize with friends, garden at their California desert home and enjoy the pleasures of cooking.
When Paz went to the dialysis center, David said his wife rarely experienced any spontaneity. “HHD is more convenient, we set our own time and dialyzing at home is a more relaxed environment for her,” he said.
The role of HHD care partner has changed David’s life, too. “I have to plan more for socializing with my friends.” Although there is more planning involved for David’s outside activities, he says helping his wife is a priority.
"I think being my wife's care partner has brought us much closer," he said. "We no longer take each other for granted." And after being together for 30 years, David and Paz's motto continues to be, "Take life one day at a time."
Rudolph Hofheinz
Rudolph Hofheinz is an active home hemodialysis (HHD) patient who was diagnosed with chronic kidney disease (CKD) over three years ago. Years before being diagnosed with kidney failure, Rudolph had a combined surgery of over 20 hours to repair a tear in his heart. The doctor told his wife and pastor he had a 15 percent chance of surviving the intensive surgery. Miraculously, Rudolph endured, but had to spend three months in the hospital and another three months in physical therapy to regain movement in his arms and legs.
Rudolph’s chronic kidney disease was diagnosed after all the pain he had already gone through with his heart surgery. But the discovery and ability to use home hemodialysis has helped Rudolph maintain a life of travel and time spent with those he cares about most.
“After 3 weeks of HHD training, I started HHD at my home and I felt much better after a week,” said Rudolph. “[I] enjoyed picking my treatment times and being able to travel. I did so well, my doctor cut my [dialysis] days from six to five.”
Since then, Rudolph and his wife (who is his home hemodialysis care partner) have traveled throughout the eastern United States to visit family in North Carolina and Virginia. He and his wife also made time to visit Panama City, FL, for a week-long vacation. His home dialysis fluids were conveniently delivered to the couple’s resort.
“I love the flexibility HHD provides me,” said Rudolph. “I recommend HHD to anyone who has a willing and able partner. The benefits of health, enjoying life more, enjoying more types of food previously restricted; [these] are paramount reasons to enjoy HHD.”
Although Rudolph is recovering from a broken hip, he says he looks forward to playing with his grandchildren and getting back onto the golf course.
Rudolph says simply, “Life is good, very good.”
Patsy Harvey
Patsy Harvey currently is on home hemodialysis. At age 76, Patsy has discovered the freedom – and newfound improved health – she gets from being a home dialysis patient.
At first it was upsetting for Patsy to accept that her kidney disease escalated to her having to be placed on dialysis. “When I first learned I had to go on dialysis, I called my oldest daughter a little upset.”
Her daughter reassured her that dialysis was for the best and that it was only to help with her ailing kidneys. Patsy knew dialysis was her only option, but to learn that home dialysis was available to her was encouraging.
“Now I can say home dialysis is good,” said Patsy.
Patsy and Buck, her husband of 54 years, needed her to be on home dialysis to keep up with their busy schedule—because four daughters and 12 grandchildren are a lot of loved ones to visit! But Patsy and Buck wouldn’t have it any other way.
“Home dialysis has made it possible for us to live a normal life,” Patsy said. Aside from their travels throughout Texas and New Hampshire to visit family and attend church, Patsy and her husband are season ticket holders to the Houston Astros and rarely miss watching their favorite team.
Patsy continues to enjoy doing the things that make her and husband’s life fulfilling – and home hemodialysis has let them do just that.
Harry Pizutelli
Harry Pizutelli is a home hemodialysis patient and devoted husband and father who has worked as a professional in both corporate America and the private sector. He currently manages a program for the State of New Jersey that builds modular ramps for people with disabilities who want to work or continue their education.
“Home hemodialysis allows Harry more precious time to be together with his family and out with friends socially,” Harry’s wife and care partner said. “The flexibility of home hemo fits nicely with his very active lifestyle.”
In addition to working and hanging out with friends, Harry spends his time educating people who are interested in home dialysis.
“The beautiful nurses at the Plainfield, NJ, DaVita at Home know that they can call Harry at anytime day or night to ask him to speak to someone who is inquiring about home hemodialysis and has questions or needs supports,” Harry’s wife said.
Harry also enjoys traveling. “Nick NxStage,” as he has affectionately named his home hemodialsyis machine, has traveled with him to the Jersey shore, on wine tasting getaways and plenty of weekend adventures.
“Now we just have to figure out how to get ‘Nick’ on that Jet Ski,” his wife said. “There’s no stopping Harry now.”
Joseanna Butler
Joseanna Butler is an active mother of two and grandmother of three who doesn’t let dialysis slow her down. Joseanna chose home hemodialysis so that she wouldn’t have to schedule her activities around her dialysis treatments and could fit dialysis easily into her busy life.
The home hemodialysis training that Joseanna received was detailed and thorough, and the care she receives from her health care team is top notch. She now enjoys the freedom she has to travel and pack her daily life full of fun activities.
“Our sons are football coaches at different schools,” she said. “We are able to attend games and activities for both sons, and we enjoy every minute and the fast pace. We have three wonderful grandchildren, and we are able to attend a play, lunch for grandparents or a sporting event. Regardless of the time, we can be there.”
“The new machines make it possible to travel with ease either for a short visit with family or friends or on a long vacation,” she said. “Home hemodialysis gave me the opportunity to open doors to freedom.”
David Rosenbloom
David Rosenbloom describes himself as a “pretty hard guy to knock down,” and his description is spot on. Since his kidneys failed, David has been on a quest to learn everything he can about his health and the options available to him so that he can live the fullest life possible.
David’s kidneys failed in June of 2002, and he found out about his kidney problems only a month in advance. “I was a month away from a major heart attack, feeling terrible and having digestion problems,” David said.
When his doctors told him his kidneys had failed over a six-month period, even though he had no previous family history of kidney disease, he was shocked. His doctors went on to explain that ultrasounds showed one of his kidneys was very small and scarred. “It’s like somebody changed your body overnight, the body that you’re used to. All of a sudden, you can’t eat certain things and you have no energy.”
David first began in-center hemodialysis and was on it for three years until a trip to Washington state got him thinking about home hemodialysis (HHD).
“We went to visit family in Seattle, and home hemodialysis was very popular there,” he said. “My family wanted me to move up there and start home hemo.”
Once he began considering home hemodialysis, David approached the people at the University of Southern California dialysis clinic and told them he was interested in home hemodialysis. When he was first trained to do HHD, he learned to use a large dialysis machine like the ones in the center because smaller, portable machines were not common.
“I could walk into a clinic and attach someone to a machine today,” he jokes, when talking about how thorough his training was.
David and his wife, who has been his care partner, learned to use the machine, and they were both immediately happier.
“I had my freedom, and I was feeling much better,” David said.
Not too long after he began his dialysis at home, David learned about the smaller, portable home dialysis machines on the market and approached his doctor about switching to one. His doctor told him to go for it.
“I completed my training on the new machine in five days because I had a lot of experience already with a dialysis machine,” he said. “My wife and I were just laughing the whole time because the machine was so easy to use and the directions were so clear. It’s like putting a load of clothes in the washer. That’s it.”
“Within about two or three weeks, I was feeling phenomenal, and I kept getting better and better and my blood kept getting cleaner and cleaner, and I started opening up my diet,” he said. “I have a tremendous amount of energy. I’m totally alert. We’ve reduced my blood pressure medicine, and I’m free to travel.”
David attributed his happiness on home hemodialysis to many things, one being his wife and care partner. They’ve been married for more than 39 years.
“I have a wonderful wife, a life partner,” he said. “I married my best friend, and when you have that kind of support, a lot of tough things are easier to do.”
“I really can’t recommend daily dialysis enough to everybody,” he said. “When you’re facing a disease like this, you have to make some major decisions about your life. Your options become fewer but they become clearer,” he said. “I’ve arrived at a state of equilibrium which is really neat, and it’s really great. I enjoy life.”
In August 2008, David received a phone call that changed his life. He was told that he was to receive a kidney. Since his kidney transplant, David has become a full-time kidney patient advocate. His mission is to help kidney patients become educated about their disease and the kidney transplant process. He has spoken to university students about his cause and hopes to continue teaching others about the importance of kidney disease awareness and treatment options.
David has also published his memoir, Becoming Me. His book gives a look at how he coped with kidney disease, his time on dialysis and life with a new kidney. You can order his book at http://www.uarts.com/kidney/.
Annette Davenport
Annette Davenport is a home hemodialysis patient living in Jennings, MO.
Annette Davenport is a 30-year-old, newly married, mother of two children. She is also a home hemodialysis patient. When Annette began dialysis three years ago, she was going to school, working, taking care of her family and going to a dialysis center for hemodialysis three times a week. However, the schedule at the dialysis clinic was restrictive and did not allow her to schedule her treatments around her daily obligations.
“I had no room in my life for dialysis, not including I was in denial about starting dialysis,” she said. “When I first started dialysis it completely drained me. It left me with no energy at all. I couldn’t do the normal things that I was used to doing with my children and at home.”
Annette began researching kidney disease and the different types of dialysis in an effort to learn something that would help her get her energy back. She was used to leading an active life and being able to keep up with her kids and wasn’t willing to settle for anything less than that.
“I wanted to continue to live my life without any interruptions from dialysis,” she said. “So, I started to do searches on the Internet about home dialysis treatments and other dialysis options.”
That’s when she came across DaVita’s website and began reading about home dialysis and the many lifestyle and clinical benefits it brings to people’s lives.
“Thank God I came across DaVita and all the wonderful options DaVita offers patients,” she said.
After learning about the various options available to her, Annette called a DaVita representative.
“After that phone call, my life has changed for the better, forever,” she said. “Now I see that I have more energy, stamina, my skin has improved and things in my personal life have changed dramatically for the better.”
“Now, I set my treatments around my life, not my life around my treatments,” she said. “Thanks to DaVita, I now have my life back.”
Nicole Fasulka
Nicole Fasulka is a home hemodialysis patient living in Stanley, NC.
Nicole Fasulka is an active, healthy 34-year-old who enjoys spending time with her husband and her dog and boating on the weekends. A real 'go-getter,' Nicole's also extremely driven and has been busy climbing the corporate ladder, thoroughly enjoying what she does for a living. In fact, she was recently promoted to Chief Financial Officer of her company.
This past May, after a series of tests for her constant migraines, Nicole received a harsh blow. She found out she had kidney disease - and that she needed to go on dialysis. The doctor explained her options, one of which involved going on 'disability,' and starting the daily, 4+ hour process of dialysis treatments in a center.
"Dialysis isn't pleasant, but finding a treatment that allows me to be me was a relief"
With her drive to continue working and commitment to her high-level position, going on disability to manage her disease was NOT an option. Her doctor then suggested home dialysis. Nicole's boss got wind of this suggestion and contacted DaVita at Home herself to help Nicole and her family get treatment started.
In June, Nicole became one of the first local residents trained to perform dialysis at home while she sleeps. DaVita at Home provided the training (something Nicole, her husband and her mother were able to learn easily and quickly), the equipment (she's using NxStage) and support needed to conduct these treatments.
Nicole celebrates her 10th anniversary with her North Carolina-based Scurry Construction in February and is feeling more energetic than ever. Even more remarkable is how she refused to give up her healthy, active lifestyle, strong work ethic and positive attitude.
"Dialysis isn't pleasant, but finding a treatment that allows me to be me was a relief. If you're in a bad situation, you have to do everything you can to make it better!"
While Nicole notes she's "blessed to have so many great people in her life," she wants others in her situation to know how important it is to learn about all the options out there. DaVita at Home was it for her, and it could be for you, too.
Barbara
Barbara has always lived life to its fullest and maintained a busy professional, family and social schedule, with little time to waste. After being diagnosed with kidney failure in 1981, Barbara did not let it slow her down and kept going full steam ahead. When diagnosed, she recalls how she didn't feel depressed. "I never thought my life was over," she says.
Barbara started dialysis in 1983 and remained on it for several years until she received a transplant. Unfortunately, her transplant failed, and at first, she returned to dialysis in a center. Barbara recalls the center environment being hard to handle: "When I looked around at the people sitting in the chairs I would think, 'these are sick people,' and I don't feel like that." Now, with her husband as her supportive dialysis partner, Barbara enjoys being able to do dialysis at home. "I feel really lucky that we're in this together," says Barbara.
Barbara enjoys that she can be very proactive in her care. "I can monitor my own treatment. I am attuned to my body better than anyone else. I can tell when I'm going to cramp, when my blood pressure is dropping and I know what to do about it. It means I can take care of myself better than anyone else," Barbara adds. She and her husband have developed a routine that works dialysis into her busy schedule, which involves work, friends and family. "On dialysis nights, my husband sets up the dialysis machine, which is located in the master bedroom, before I get home from work. It only takes up about 36 square feet and it's a very comfortable setup," she explains.
To Barbara, the greatest benefit of DaVita at Home dialysis is the freedom and flexibility it allows her. Recently Barbara was able to attend her son's college graduation without having to worry about dialysis. "I was able to attend his ceremony and then got on the machine three hours later than I normally do. It didn't make a bit of a difference. But in the unit, you can't do that," recalls Barbara.
Barbara continues to live an active and in-control lifestyle, which includes taking walks with her husband, piano lessons and gardening. "It's important to have the right attitude about dialysis," Barbara advises.
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