You can take it with you, home dialysis, that is

barry-meeks-2It was by chance that Barry Meek discovered he had kidney disease. A minor mishap sent him to the hospital in 1992. Routine blood work indicated renal failure caused by high blood pressure – something he did not know he had. Years later, his medical journey introduced him to home dialysis – giving him more flexibility to live his life at home and away.

Lifestyle changes

After his initial diagnosis, Barry started taking blood pressure medicine, stopped smoking and changed his diet. Barry said, “I stopped eating fried food and junk food. I also quit smoking and drinking ““ since one without the other wasn’t much fun. I continued working at the American Red Cross and kept my life going as normal as possible.” These changes kept him off dialysis for five more years.

Barry didn’t let his kidney health slow him down. In 1996, he took a second job with the St. Louis Rams as a guest services host. His duties include crowd control and making sure the media doesn’t come too far onto the field when filming. “It’s a fine job – I get to see all the home football games. Unfortunately, we did not get Super Bowl rings – now that would have been nice.”

In early 1997, Barry was told by his Washington University physicians, internist Lewis Fishbein, MD and renal specialist David Windus, MD, it was time to start dialysis. Barry was on dialysis for a little over a year when he received a kidney transplant.

Life saving, not life restricting

Barry’s kidney transplant was rejected in 2001 and he had to start dialysis again. He had been coming to the Washington University dialysis center for two months when renal specialist Brent Miller, MD, suggested home dialysis. Lisa Koester, a nurse practitioner, trained me to do home dialysis – she is very special to me. I now do nocturnal (when I’m sleeping) home dialysis six nights a week – sometimes it’s six nights in a row and some weeks I’ll do three nights on, one night off, three nights on – it’s my choice. The home program gives me the freedom to keep working both jobs, travel, and do whatever I want to do. I also see Dr. Miller once a month – I wouldn’t trade him for anything.”

As a big fan of home dialysis, Barry talks up the advantages to others on dialysis. But he says the fear of sticking themselves with needles is what keeps most people from trying it. He tells them “You’d be surprised at what you can do if you have to do it to survive.”

Barry has his dialysis routine down to a science. He tries to be on the machine by 10 pm and off by 6 am, for a total of eight hours. That gives him time in the morning to remove his lines, sterilize the machine, get ready for work, eat a little breakfast, have his coffee and watch the news before he heads out the door for the day.

Have machine, will travel

Being on home nocturnal dialysis has allowed Barry to travel. His new machine is small enough (about 18″ x 15″) to be portable and is easily transported on a dolly (airlines do not charge for medical equipment). Barry and his wife recently were able to go on a cruise. When they arrived at the ship, all his supplies were waiting for him in his stateroom. “I always wanted to go on a cruise, but I felt restricted. There’s really not much I can’t do now.”

Two wishes

Once his kidney was rejected, Barry was eligible to go back on the transplant list. But he was doing so well with the home dialysis, he put a hold on getting a transplant. He said, “My health was good ““ if something’s not broken, why mess with it?”

He decided it’s now time to get another transplant, before he gets too old. Besides his wish for another kidney, Barry’s wish would be for a dialysis machine that uses one needle instead of two. Hopefully both wishes will come true.

Physician profile: Brent Miller, MD

Brent Miller, MD is an associate professor of medicine in the division of renal diseases. He is medical director of home dialysis. His areas of clinical interest include kidney transplantation, home dialysis, nocturnal hemodialysis and peritoneal dialysis.

Why did you choose nephrology?

During my internal medicine residency I wasn’t sure what specialty to pursue because I liked being involved in the many different areas we were exposed to on a daily basis. I was attracted to nephrology during my third year of residency because of the diversity of patients and problems. Every day and literally every patient was something unique. I found it interesting, challenging and stimulating.

Another reason I became interested in nephrology was both my grandfathers had kidney failure. My mom’s father lived in rural Indiana in the late 1960s and there wasn’t a dialysis machine anywhere close to his home. He essentially died of renal failure. My dad’s father was actually one of the early patients on peritoneal dialysis in rural Indiana in the late 1970s and early 1980s. I got to see what dialysis was like 30 years ago, compared to what it is now — it is so much different. Watching what both my grandfathers went through was the start of my interest in renal failure.

What brought you to Washington University?

I guess I’m what is known as a “lifer” ““ I came to Washington University as a medical student in 1986 and have been here ever since. I’ve developed long-lasting personal and professional bonds here.

Which aspect of your practice is most interesting?

I deal with a patient population that has a fairly serious illness, and yet we’re able to offer some hope for improvement in their condition. I enjoy being able to help people who might have been told by other physicians that a complete and active life was not possible for them.

In addition, it has taken a lot of work and time, but by changing the way we do dialysis, we’ve been able to have an impact on evolving therapy on a national and international basis. We’ve also been involved in moving kidney transplant forward from where it was 15 years ago.

The part that I enjoy the most is having an idea and seeing an opportunity to improve the way something is done — then watch it develop years later. More than ten years ago, we recognized that if dialysis was moved into patient’s home, it could be done more frequently than three times a week, and the patient would do better. Washington University was one of the first programs in the United States to offer home dialysis. Now it is part of routine care. It has been immensely enjoyable to see an idea go from something on paper to where it is now — a practice that almost every medical center offers.

I’ve also enjoyed changing the process of how patients are treated after transplant. It was a team approach working with Dan Brennan, MD, the surgeons and Barnes-Jewish Hospital transplant program. We were some of the pioneers in figuring out how to prevent patients from getting a viral infection, such as CMV, after transplant. We were also able to reduce rejection rates. When I started as a fellow, rejection rates were 30-40%, and now they are less than 10%. That is quite an impact.

How does the home dialysis work?

We have a smaller machine that’s much easier to use and we teach patients how to do it themselves — typically 5-7 days a week. We have some patients who choose to do it while they sleep at night so they get their days free. They have the flexibility to have dialysis any time of day, in any room in their home. We’re trying to make it less and less cumbersome. Dialysis is never going to be fun, and there is always going to be a certain amount of inconvenience. But we’re trying to make it just one of life’s annoyances rather than a devastating, life-changing event.

What are some of the new developments in your field?

Since integrated circuits were introduced, dialysis machines haven’t changed very much in the last 25-30 years ““ we’re still at the “mainframe” computer stage. The major advance in the field is going to be technological. If I can use an analogy — our goal is to take dialysis from early mainframe that’s the size of a refrigerator, to today’s laptops with WiFi. We hope to make machines lighter, about 40 pounds, with smart technology so that they can be controlled by the patient with a touch pad. The graphic interface and remote connections will allow the machine’s data to feed directly to the doctor’s office, giving him or her the ability to review what’s going on in almost real time.

We’re also trying to go from using two needles to just one. A lot of people might not think that’s a big deal. But ask a patient, “Would you rather be stuck with one or two needles?” Considering the number of times a dialysis patient gets stuck, it makes a difference.

How recent is the invention of dialysis?

Dialysis was first proposed in the 1940s. Willem Kolff, MD, built the first successful dialysis machine in the Netherlands during WWII. Because there was a shortage of supplies, he used a wrecked airplane carriage for the dialysis bath. But there were a lot of problems — of his first 14 patients, only one survived. No one realized that when blood is taken out of the body and run through artificial tubing, it almost instantly clots. Anti-coagulants, such as heparin, had yet to be developed. Plus, there were other advancements that needed to happen in order for dialysis to be effective — such as semi-permeable membranes to filter the blood; and IVs, fistulas and grafts to access the blood. It wasn’t until the late 1960s and early 1970s that dialysis was available on a wide scale.

Dr. Kolff’s initial view was that he thought dialysis might be able to help people in the hospital with acute renal failure until the kidneys could recover. He had no hope that dialysis would ever be able to keep people alive with chronic kidney failure. Dr. Kolff lived until 2009, so over the past 60 years he was able to see that his invention actually could prevent people from dying.

Where are you from?

I’m from a large family in northern Indiana. After high school, I moved across the country to attend Stanford University. It was a very good experience ““ it made me grow up and become independent. The cultural differences between living in a small town in Indiana and the Bay area were very interesting for an 18-year-old.

Which particular award or achievement is most gratifying?

It’s gratifying when professionals from other universities and medical centers visit us to observe and duplicate some of the processes we’ve done. There is no award or plaque on my wall, but I would hold that up as my biggest achievement ““ we’ve had an impact and are recognized as respected leaders in developing this type of patient care.

Something else that is very satisfying is being able to successfully offer home hemodialysis. When we started thinking about this in 1999, people laughed at us and said it would never work ““ but it does work. And those who doubted us are now doing it. That is very rewarding.

What is the best advice you’ve ever received?

The best advice I’ve received is a baseball analogy. When times are tough, take two pitches to see what’s going on, and then hit it to right field. In other words, if things aren’t going well, take a step back — you don’t have to act immediately. Don’t try to hit it out of the park, just hit it to the opposite field and get a single.

Another way to say this is to not get caught in the day-to-day ups and downs. Sometimes you can’t see how it’s going to work out, but if you consistently do the right thing, it will work out.

If you weren’t a doctor, what would you like to be doing?

I would be involved in engineering or architecture. I like working with tools, doing minor carpentry and repair work around the house. I enjoy creating and building.

It’s interesting working in transplant and dialysis because you get to see solutions invented for your patients. It’s amazing when you talk to the engineers and tell them what you need ““ a precise blood flow, a specific composition of calcium, or better venous alarm. They come back a few months later with diagrams on how it could be done and then they figure out how to manufacture it. It’s just incredible people can be that creative without knowing the medical side of it. I would love to be able to do that.

Life begins at 45: A story of a transplant

With a new kidney, Stephen has found time for some of the fun he didn’t know he was missing. He no longer sleeps his evenings and weekends away.

With a new kidney, Stephen has found time for some of the fun he didn’t know he was missing. He no longer sleeps his evenings and weekends away.

Stephen Farley spent almost his entire life with damaged kidneys. At age four he had an obstruction between his kidneys and bladder causing urine to back up into his kidneys – resulting in permanent damage. This is the story of how a kidney transplant changed his life at age 45.

His wife knows best

For many years Stephen’s low-functioning kidneys had almost no impact on his life or activities ““ even though doctors told his parents he would probably need a kidney transplant by age 16. Stephen did not give a second thought to his 20% kidney function until he turned 40. It was then that his wife insisted he get a physical – he had not seen a doctor since he left home at age 21.

Stephen’s doctor saw the blood test results and phoned him right away. He told Stephen his kidneys were failing and urgently recommended he see David Windus, MD, a Washington University renal specialist as soon as possible. The doctor’s phone call panicked Stephen; he thought he felt and looked fine. He did not realize how bad his kidneys were.

Always tired

“I thought the physical nature of my job in the shipping department for an auto parts manufacturer was why I was always tired,” said Stephen. “It is true, I would come home from work and lay down for the rest of the night. I used to play ball with the neighborhood kids, but afterwards, I was just drained. My son wanted to know why I slept all the time. It never occurred to me that it was my kidneys.”

Time for dialysis

When Stephen’s creatinine levels reached 8.9 (normal levels are .5 to 1.2), he was put on a transplant waiting list. He started dialysis when his creatinine hit 13.9 — he was on dialysis for only one month when it was determined that his son and two sisters, Cheryl and Debbie were all matches as donors. Stephen did not want to use his son’s kidney because he was so young, so his sister Debbie stepped up and agreed to give him one of her kidneys.

D(onor) day

A pale and listless Stephen and healthy Deb before his surgery

A pale and listless Stephen and healthy Deb before his surgery

July 2, 2009 was emotional day for Stephen and his family. He wasn’t frightened because he felt God had taken care of him so far, but he was very nervous.

The 6 ½ hour surgery was performed by a team of Washington University transplant surgeons at Barnes-Jewish Hospital . Before and after pictures showed the contrast of a sick, pale Stephen with an almost immediate transformation to a healthy, glowing Stephen.

Stephen had a bet with his sister about who would be up and walking around first. You can see if the photo below, he won.

Monique

Debbie named the kidney she donated to her brother – she has named it Monique. Monique will have her own set of birthdays.

Today Stephen has to take 13 pills a day, and will every day for the rest of his life, but he doesn’t see it as a big hassle. He feels better than he has ever before.

“I got there first!” Stephen was bound to win the bet.

“I got there first!” Stephen was bound to win the bet.

He also feels honored and humbled that so many people care for him. He’s gained 20 pounds, and never sleeps the evening away on the couch.

Stephen’s new kidney changed his appearance, his energy and his life. He says “I credit God for my life and will never forget what my sister has done for me. Every month she texts me on the day I had my transplant — she lives in Kentucky, but to me she is much, much closer.”


Stephen’s sister Deb read this to her friends at a church fund raiser for Stephen

The top ten reasons I am donating my kidney

  1. I love my brother very much and he will owe me for the rest of his life!
  2. They told me at work in order to get eight weeks off, I had to donate a kidney or get pregnant.
  3. I will be related to the only real man with a female organ.
  4. Someone told me I can apply for a handicap sticker.
  5. I can’t sell my kidney, but I can make up a rental agreement.
  6. Blood test confirmed he was a true University of Louisville Cardinal fan.
  7. I found out that my kidney donation could be tax deductible if he becomes a inister.
  8. I can have all my friends visit me without having a Tupperware Party.
  9. I can’t wait to see my sister-in-law, Gena, waiting on him hand and foot.
  10. My mother made me do it!

Beyond the canvas

Mr. Boccia paints his masterpieces a decade after his kidney transplant

Mr. Boccia paints his masterpieces a decade after his kidney transplant

In 2002, Edward Boccia, a world-rated expressionist painter and poet was doing some drawing studies from a model. He had become so weak from his kidney failure, that he had difficulty holding the chalk. “It felt like it weighed 50 pounds,” he says, “I could hardly lift it.” But since his kidney transplant at age 81, Mr. Boccia wields both the chalk and the brush. He has gone on to paint many more masterpieces.

Early diagnosis, anything but a still life

In his early 30s, Mr. Boccia was told by his primary physician that his kidneys were damaged – probably as a a result of the chronic high blood pressure he had for many years. His doctor told Mr. Boccia he would need a new kidney someday, but not at least for 30 years.

Actually he was luckier than that. Edward Boccia led a full life ““ teaching art for 35 years at Washington University, painting four days a week and summers. He took his family with him to Europe for several sabbatical studies. He published books of poetry. He received many national and European awards and prizes for both art and poetry. He was knighted to the Cavaliere al Merito della Republica of Italy by the Italian government. He received many local prizes and awards, including the Order of the Crown, King St Louis IX of France, from St. Louis University. Mr. Boccia retired as professor emeritus from Washington University at 65 and continued his productive and creative life.

Mr. Boccia says during all this time, he felt no symptoms of his kidney disease. “I was in great shape, I didn’t feel particularly tired, I ate a normal diet.” It wasn’t until he was 75 that the symptoms of his kidney disease began to interfere with his life ““ his energy was sapped, his mood altered. Several years later, he began hemodialysis dialysis three times a week, which he received from a dialysis center in the community. At that time, Mr. Boccia’s name was put on a list requesting a kidney donor.

The unexpected call

One evening in January 2003, feeling particularly down, Mr. Boccia went into his bedroom and said to himself, “This is it, you are going to die.” And that very night, actually at 2:00 a.m. in the morning, the phone rang. It was the transplant office at Barnes-Jewish Hospital. “We have a kidney for you.” He got the new kidney that day from an anonymous donor.

The transplant nurse told him he was going to feel great after surgery.” I thought it was just a pep talk, but it was true. Immediately after surgery, a big weight left my shoulders, I was sitting up in my bed having a good time and my wife was shocked.”

Life changes

The physical manifestations of kidney disease immediately resolved ““ the grey pale complexion, the excess fluid in his abdomen and legs. He looked healthy. The new energy provided by the kidney transplant has let Mr. Boccia continue to paint and be shown, and write and be published.

His Washington University renal specialist, Daniel Brennan, MD says the decision about who receives a kidney is not made based on age, but on the general health and expected activity level of the recipient. Mr. Boccia was never told any facts about the donor, but he is grateful to whoever it was. Grateful too is the art world, which has been able to enjoy his work for another decade.

A positive attitude takes you a long way

Bank on the road again

Bank on the road again

Mr. Dana Clay was only 23 when his kidneys failed. He was an active young man, but one day he came home from the gym feeling queasy and lightheaded. The doctor thought it was his tonsils, so he was started on antibiotics. When that didn’t help, Mr. Clay went to the hospital. Tests showed he had 7-8% kidney function.

Even though Mr. Clay had never been seriously sick, other than the occasional cold, his kidneys were failing. He didn’t have a year or two to get used to the idea that someday he would have to go on dialysis — he had to start immediately.

At home or in-center dialysis – there is no right or wrong decision

Home dialysis was the first option Mr. Clay chose. He was trained at Barnes-Jewish Dialysis Center and did home dialysis for five years ““ until he received a kidney transplant.

Unfortunately the transplanted kidney never did function 100%. Mr. Clay then returned to the dialysis center for in-center treatment and has been going ever since.

When asked if he would consider home dialysis again, Mr. Clay replied, “Home dialysis worked for me when I was younger. In-center dialysis works best for me now. I prefer to let someone else do all the work. At home I had to do everything, here I do nothing.”

Mr. Clay has dialysis three times a week — he starts about 5:45 am and finishes around 9:30 am. Then he goes on with the rest of his day.

Ask questions, get answers

“I was a bad patient at first,” said Mr. Clay. But he had a nurse who told him to ask everybody questions about everything. When procedures and doctor’s orders were explained to him, he became more cooperative because he was informed.

His best asset was attitude. He said to himself, “OK, if I have to do this, I’m going to be the best at it. What can I do to make this better for me?” He discovered it was important to eat the right foods, exercise and learn as much as he could to stay healthy. “Once you master it, life becomes easy.”

When Mr. Clay learned he could still do just about everything, he was much happier. “I really didn’t care about being on dialysis because it didn’t stop me from doing what I enjoyed. I could still play basketball. I could still go places. It was just a little inconvenience.”

Destination dialysis

Being on dialysis, says Mr. Clay, does not mean an end to vacations. Most dialysis centers have toll free numbers or online searches to make it very easy to make arrangements when you are away from home. Call the toll free number and tell them where you are going, and they will set it up for you. Or go online and type in the zip code of your destination — dialysis center locations pop up within a ten mile radius. “Dialysis is dialysis wherever you go.”

Barnes-Jewish Dialysis Center now has an in-house person who is dedicated to helping patients schedule their dialysis when they are traveling.

Even keel

Mr. Clay’s advice for not feeling drained after dialysis is simple ““ just regulate what you eat and drink. “If you keep the amount of fluid you gain to a minimum of two to three kilos between treatments, you can avoid the peaks and valleys to keep your energy level on an even keel after dialysis. The less fluid they have to pull off to get you back to your “dry weight”, the better you will feel.”

It’s a partnership

Mr. Clay is a speaker at National Kidney Foundation seminars for people who are new to in-center hemodialysis. “I tell them that life isn’t over. They can still do just about everything they did before dialysis ““ they can work, travel, and enjoy their family and friends. The only downside is that it takes time out of your day. It’s a small speed bump.”

He serves as an example that you can survive this diagnosis and do very well. “It’s important to work with your dietitians and your doctors – to be in partnership with them and not just be a patient.”

One of the great rewards Mr. Clay gets is the positive feedback from the people he has spoken to. They are grateful for the advice he gave them. “You just do it because it’s the right thing to do.”

A donor’s story

There are some people for whom giving is just a way of life. People like parents, police officers, organ donors. People like Phillip Wisely.

Wisely, 54, a native of Murphysboro, IL, is a married father of three. He is a former police officer from the Metro East. He currently works in the compliance department at Edward Jones, Inc. And on Sept. 9, 2010, he donated one of his kidneys to a complete stranger.

It’s nothing special

Yet Wisely doesn’t think he’s done anything special or out of the ordinary.

“To me, the doctors are the heroes,” he says. “They do this all the time. I’m just a simple person, a country boy from southern Illinois.”

Before August 2009, Wisely had never thought about organ donation. Other than seeing the occasional news story on TV, he didn’t know much about organ transplant. But one day, while reading the business section of STLToday online, he noticed a link to a story about a young person who needed a kidney transplant.

Wisely says he’s not sure why, but he clicked on the link. He read the story about a young area woman who wanted to start college after getting a transplant, but who was having trouble finding a donor because of antibodies in her blood.

Wisely says the thought just occurred to him to that maybe he could become a donor for the girl.

“I really have no explanation for it,” he says. “I’ve never known anyone who’s been a donor. I’ve never really known anyone who’s had a transplant. I’m very religious and I guess God just directed me to that [news story].”

He looked up the patient’s phone number and called. Her family directed him to Jean Bowe, a living donor transplant coordinator at Barnes-Jewish Hospital.

Bowe met with Wisely and started working him up as a potential living donor. Testing showed that as an avid bicyclist, Wisely was an excellent candidate to be a kidney donor.

“I am in pretty good shape,” he admits. “I try to ride 20-30 miles a day about five days a week. But don’t get the wrong idea – I ride so that I can eat.”

Further testing showed that he’d be a good match for the young woman he had read about. Wisely began preparing to donate his kidney. His wife and children were worried at first about him and his health down the road.

Donors live longer

Organ donors, because of the thorough testing they undergo, are extremely healthy and very, very rarely have long-term problems, Wisely told them. In fact, statistics show that organ donors tend to live longer than the general population, doctors say.

Wisely’s family came to support his choice wholeheartedly, he says.

But before the transplant could be scheduled, the young woman was able to get a kidney from another source. Wisely was happy for the young lady, and thought his opportunity to be a kidney donor had passed.

Several weeks later, Jean Bowe called Wisely. Comparing his test results with other people on the waiting list for a kidney at Barnes-Jewish, she had found what looked like a perfect match. Would he be willing to give his kidney to a perfect stranger?

Wisely says he didn’t think twice about it.

And so, without ever meeting the person he was giving it to, he checked into Barnes-Jewish and donated his kidney.

Why did he do it?

Wisely says he felt no fear before and had almost no pain after the surgery. He donated on a Thursday, was discharged on Saturday and was working from home on Monday. He’s since returned to his normal life ““ working, riding his bicycle and attending his son’s wedding this past New Year’s Eve.

Wisely briefly met his recipient before they were discharged from Barnes-Jewish, and has exchanged a few emails with him. But they don’t keep in close touch.

“This really hasn’t changed my life,” he says. “Especially not health-wise.”

So why’d he do it?

“I never would have known [about the girl who needed the kidney]. I think God directed me to look at that article on STLToday that day,” he says. God works in mysterious ways.

But what made him go through testing and surgery to help someone he’d never met?

Phil Wisely says that John F. Kennedy was one of his favorite presidents, and Kennedy is famously known for urging Americans to give of themselves. For Wisely, that’s a way of life.