Home Hemodialysis Patient Advocate George Harper Doesn't Let Retirement Slow Him Down One Bit

Introduction

One thing you can say about George Harper, MEd, EdS, a retired high school counselor and premier home hemodialysis (HHD) patient advocate: he doesn't let retirement slow him down. You could even say his dedication to taking frequent trips in his spacious motor home is downright awe-inspiring. Consider this...

George and his wife, Irene, have a two-story house in his hometown of Rome, GA, a town of about 50,000 in the foothills of the Appalachian Mountains approximately 65 miles northwest of Atlanta. As a HHD patient, his dialysis room is on the second floor. It houses a large, 250-pound dialysis machine with volumetric control. George says it's an excellent machine that provides every-other-day dialysis for him, but it's not exactly ideal for frequent travel—particularly from a second-story perspective. There's also a 100-pound reverse osmosis (RO) system for water treatment.

But George and Irene are not only dedicated to each other—they downright love their vacation time.

They have a porch on the second floor with a hoist mounted on it. The winch has a steel cable.

"We roll the machine through another bedroom onto the porch," Harper explained to FPO. "Then we hook up a sling to the machine. The hoist is swung out, lowering the machine to the ground."

Since they live on a hill, the motor home has to be driven down to the street and parked perpendicular to the driveway. Four eight-foot long boards are used as ramps. In between the two sets of boards, two two-foot stepladders are set up. Two of the ramps lead from the ground up to the stepladders while the remaining two ramps go from the ladders to the entrance of the motor home. The long ramps cut down on having to struggle up a sharp incline.

Then George and Irene carefully roll the dialysis and RO machines down the driveway

"We tie a rope around them, and Irene gets up in the motor home," George remarked. "Then she pulls, and I push them up those ramps. We decided we would have to be gone at least a week to make it worthwhile going through all that. Nonetheless, it has been a wonderful source of satisfaction and psychological freedom to know I can still travel [and dialyze at the same time]."

"Qn the Road Again..."

The Harpers take it all in good humor, and, by now, they ought to be used to it. They have been doing it since 1982. For 10 years, they had a small motor home. Then, in 1993, they bought a much larger, bus-sized one, making the moves easier—or, at least, spacier. Fortunately, motor homes have the three basics for dialysis—electric, water, and sewer capabilities. Even so, George had to make some electrical and plumbing modifications.

But, as any patient who travels while doing dialysis knows, you can occasionally have some "hair-raising" experiences. Apparently, the water at spots in the Appalachians has a very low mineral content, George believes, and "the RO thinks it is not doing its job. An alarm sounds. Then I have to take a pair of alligator clips and short out the alarm. The RO measures the conductivity of both the incoming raw water and the product water. There should be a difference indicating the machine cleans the water. If you have water with a low ionic content, however, there's not much difference. Therefore, the machine thinks it hasn't done its job and sounds the alarm. That shuts it down, and you can't use it."

There can also be voltage problems. Irene said a number of the campgrounds were built many years ago, "when there weren't so many motor homes with air conditioners and microwave ovens" and other equipment dependent upon drawing extra voltage. Therefore, there is sometimes not enough power to accommodate a lot of motor homes in an older campground. The voltage "trips out," sounding the alarms on the dialysis equipment. "Then we have to turn things off in the motor home," including the air conditioner, and, at times, even the refrigerator.

"Getting Backup Treatment"

But it's all been worth it. George and Irene have traveled a lot since he has been on dialysis. One favorite jaunt has been to Key West, FL, during Christmas vacation when they were still working. They have also motored to Bar Harbor, ME, Plymouth, MA, through New Hampshire, and Cabot Trail, Nova Scotia, Canada. Last September, they drove their motor home to Denver, CO, for the annual meeting of the American Association of Kidney Patients (AAKP). (See FPO, July/August 1996, pg. 12). From there, they met some friends in Rocky Mountain National Park and also visited the Grand Tetons and Yellowstone National park in Wyoming. And, last month (February), George and Irene left yet another vacation spot in Tampa, FL, and flew out to Denver again—this time to participate with Zyblut J. Twardowski, MD, FACP, PhD, in a presentation on the "buttonhole" method of needle insertion, in which one or more permanent "needlestick" sites are used with each dialysis treatment and which George has been using for the past eight or so years, at the Seventeenth Annual Conference on Peritoneal Dialysis. (See Contemporary Dialysis & Nephrology, February 1997, pg. 18).

Most of the time, there have been no major problems. A couple of years ago, however, they were motoring through Lenoir, NC, in the Great Smokey Mountains, when the dialysis equipment broke down, and George needed a treatment. The local dialysis unit, however, would not treat him because of its 30-day notification policy. But the company that services George's dialysis machines sent a technician who worked on the machine, and everyone thought it was fixed. That night, however, it malfunctioned again. Even though he didn't normally work on weekends, the technician came to the rescue again. He even had to order a part, then pick it up at the airport, and deliver it to the motor home, on Saturday. Just in time, too, because George hadn't had a treatment since Wednesday. The Harpers will always remember the kindness of strangers.

"A Long Haul"

But it's been a long haul for George. There has never been a time when kidney disease was not a part of his life. His first brush with it came in 1946, the year he was born. His brother Billy died that year at the young age of 15 from what was then called "chronic hereditary nephritis. George is pretty sure it was really Alport's Syndrome because he and his two male siblings contracted it.

Then, in 1960, his surviving brother, Tommy, succumbed from the disease the same month (March) that Belding Scribner, MD, the father of continuous dialysis, began dialyzing the first patient with his revolutionary chronic dialysis shunt. Tommy had gone to Peter Bent Brigham Hospital in Boston, MA, and was cared for by nephrology and transplant pioneers, John B. Merrill, MD, and Joseph E. Murray, MD (a Nobel Prize recipient). In one of the early transplant operations, he received an infant kidney, but there were no effective immunosuppressant drugs back then, and he had to receive total body irradiation. Along with nine other patients in an experimental group of 11, Tommy died.

When George was only four, he was diagnosed with hematuria (an abnormal amount of blood in the urine). At nine, it was acute nephritis, and he was ordered home from school for three months of total bed rest. Two months after Tommy died, he went to Boston himself and saw Merrill, who put him on an experimental program in which he took Imuran and "massive doses of prednisone." At first, they thought he was suffering from some sort of autoimmune disease, and "they were trying to treat me like a transplant patient." He was only 14.

High School Counselor

Other than these early setbacks, Harper's life was pretty normal for about the next two decades. He began working as a high school counselor in the Atlanta area in 1974. He met Irene at a high school in Lithonia, a suburb of Atlanta where they were both employed. They were married on Valentine's Day, 1976, and he and Irene moved back to Rome that August. Then he began a 19-year counseling career at Tepperell High School, retiring in 1995.

George counseled students in a number of areas, including college placement and personal matters such as family and child abuse problems. But, later on, he specialized in conflict resolution.

"I did a lot of work with angry teenagers who were about to get into a fight," George stated. "I would negotiate a settlement between them. That work was very satisfying, and I could see immediate results. I discovered that most people who are upset and angry don't really want to fight. They just want their feelings to be protected and given an adequate airing. If they are given a respectable solution, it preserves their self-respect, integrity and dignity. Students are very happy with that."

Beginning Dialysis

Harper began dialysis in Rome on October 1, 1980. His nephrologist thought he would be a good candidate for HHD, and he was trained for that. Even today, he believes HHD has the longest-term survival rate, but the key is "your helper. I have to give credit to Irene for being such an able and devoted aid during these 16+ years. It can put a real strain on a relationship."

Irene admitted it was a "real strain" at first, particularly since she was fearful she might do something to jeopardize her husband's well-being, and, even, survival.

"For the first few months, it was real scary and was one of the hardest things I have ever done," she remarked. "Now, I think it was the best decision we ever made together. I believe George has been happier and more in control of his life. He always sought the best treatment alternatives. He wouldn't settle for second best. I believe patients at home do take more control of their lives. George is very responsible concerning his diet, fluid control, and weight gain. We can watch television and do the things together while he's dialyzing that we would be doing anyhow. But it is George who has always been the one in charge of his own treatment. I was only there to assist him. That has worked very well for us." The interest of both George and Irene in not only their own welfare as a chronic dialysis family but as strong patient advocates earned them, in October 1991, what was then the AAKP's highest honor—the Samuel J. Orenstein Award for "extraordinary service and contributions toward the advancement of AAKP's goals."

How About a Transplant?

It is obvious that George loves his life in his hometown of Rome, GA. He lives in what he calls "a very beautiful setting"—where two rivers with Cherokee Indian names, the Etowah and Oostanaula, come together to form a third—the Coosa. The rivers, he said, "are very important to the community," which has started developing attractive walking paths along the river banks while an excursion boat navigates the waterways.

It was during a recent walk with Irene along one of these paths that George began to reconsider his decades-long conflict as to whether or not he should place himself on the transplant waiting list.

Some of his close friends in the AAKP—including A. Peter Lundin III, MD, and John Newmann, PhD, both past presidents—as well as numerous others had all gotten transplanted, and he began to think that maybe his was a lone voice in the wilderness still extolling the virtues of dialysis. But he had been skeptical of transplantation for himself for a long time. When he first started dialysis, the one-year graft survival rate was only about 50%, with the patient mortality rate close to 30%. Now, of course, both are well up in the 90% percentile range. He began thinking: while a transplant would free him from dialysis, he didn't have a bad lifestyle on it at all. He was able to travel and do just about anything he wanted to do. Besides, "one of the nice things about dialysis is that it is very predictable. When I get on the machine, I know what it is going to do. I know I am going to feel a whole lot better when I get off."

"Then," he said, "as we were walking one day on one of the river trails, I turned to Irene and said: 'Now, wait a minute. I just had another thought about this. What if the hospital called and said they could give me a six-antigen match organ? I'd probably be a fool to say 'no' to that. So, I listed myself for a perfect match."

So, George and Irene Harper are ready for yet another challenge, no matter what. George Harper just may be the exception to the rule that you can't have your cake and eat it, too.

Dialysis-on-the-Road Presents Some Interesting Challenges, But It is a Recipe For the Independent Spirit

Introduction

My wife, Irene, and I have been dialyzing and traveling in a recreational vehicle (RV) for over 16 years. I have been on home hemodialysis (HHD) for more than 18 years. My final choice of that modality was based on my desire to continue working, which seemed like the best way to rehabilitate myself. I wanted dialysis to cause the least impact on my life as possible. HHD also gave me control of my treatment, which allowed me to assure quality care and keep my life as normal as possible.

The first two years were spent adjusting to dialysis. Before dialysis, we had enjoyed travel. Early on, we took a Dialysis at Sea cruise and enjoyed it very much. On that cruise, we were very fortunate to meet Dr. and Mrs. Peter Lundin. Dr. Lundin is that medical rarity: he is both a nephrologist and a patient of his own specialty. He is also past president of the American Association of Kidney Patients (AAKP). [See FPO Interview, July/August 1996, pg. 22.] We became friends, and he remains my dialysis "mentor" and is a tremendous inspiration.

"A Monumental Challenge"

Irene's family had a vacation home on Dog Island, FL, where we had spent many enjoyable summers. It is a remote place three miles off the Florida gulf coast, which can be reached only by private plane or boat. So, after the dialysis adjustment and learning period, we vowed we would continue to vacation there.

Dialyzing on Dog Island was a monumental challenge. It has only barely passable sand roads. We borrowed a van from a friend and loaded it with our COBE Centry II dialysis machine, a reverse osmosis (RO) system, a month's worth of dialysis supplies, a three-wheeled Honda all-terrain vehicle (ATV), a homemade trailer for the Honda, and the first week's supply of groceries. (Dog Island had only one store with only snack-type foods.)

We drove the 375 miles from our home in Rome, GA, to Carrabelle, FL, the embarkation point for Dog Island. The contents of the van were unloaded onto a boat that took us to the island dock. We unloaded the boat, attached the trailer to the Honda ATV and began a series of trips to the beachhouse with all the trailer could hold each time. Then we discovered that the pipe from the water well to the house had been severed. Obviously, this problem had to be quickly repaired. The necessary parts were obtained from the mainland, and the problem was soon solved.

Dog Island Days

We spent a wonderful month on Dog Island fishing, swimming, and walking the beach. One day, however, a barge struck and damaged the underwater power cable. Utility company workers came to the island intending to cut off the power long enough to make the repair. One of the islanders who knew me learned of this and warned us.

I was on dialysis at the time. A friend who was staying with us persuaded the power company crew to give me enough time to finish dialysis before cutting the power. Skeptical, one of the linemen came to the house to investigate. I was in a bedroom dialyzing when he stuck his head through the doorway and looked at me. He immediately turned around and went back out on the porch.

"There's a man in here with his blood going around in a machine, and I am not turning the power off!" he radioed back to his boss.

I was able to finish the treatment.

We did have some equipment problems while on the island which resulted in a memorable experience for the COBE technician. Our sailboat was at Dog Island. We met the tech in Carrabelle and sailed him over to the island. Then we transferred him to the trailer of the Honda ATV He sat on an ice chest while we ferried him over the sandy roads to the beach-house. Over dinner, he confessed that he had had many memorable service calls, but this one topped them all.

"Bound and Determined"

While we were on the island, someone told us of a man who traveled with his dialysis equipment in a van and dialyzed in campgrounds. A seed was planted in my brain. I realized that, from a utility standpoint, dialysis required only three things: a source of electricity, potable water, and a drain.

By the time we left Dog Island, I was bound and determined to dialyze in an RV, thereby expanding our travel options. Back home, I looked at RVs. We soon selected a class C motorhome. Anxious to start traveling, I had a plumber add the necessary water supply line and drain. We were ready for our first dialysis-on-the-road experience.

Road Trouble

On a 575-mile trip to New Bern, NC, to visit friends, we learned that motor homes can give a lot of mechanical trouble. We had just passed Atlanta when it started losing power on hills and would not go over 40 mph. At the next town, we tried to get someone to check it out, but found little help since it was Saturday. So, we continued the trip. In New Bern, we took the coach to the Chevrolet dealer, but told them we would have to have it back the next day due to the need to dialyze.

Leaving New Bern, we headed south to visit Irene's family in Valdosta, GA. While passing through Jesup, GA, I saw a tremendous cloud of white smoke boiling out from the rear. We decided to try driving the short distance to the Chevrolet dealer. A couple behind us, seeing our plight, offered us a ride to Valdosta, about 100 miles away, where I assumed I would be able to get a transient treatment at the dialysis facility there. Unfortunately, they were not able to take me. I then called the dealer in Jesup and said I would need the coach back the next day. Luckily, the dealer complied. The transmission had been improperly assembled at the factory, which caused a leak. The fluid dropped onto the exhaust pipe, creating the smoke.

Key West Blackout

Our first trip taught us some lessons and introduced us to some of the problems of dialysis-on-the-road. We were undaunted, however, and continued to enjoy our travels. Our favorite trips were during the Christmas breaks from our jobs in education when we would travel to Key West, FL.

I guess those were the best of times, but there were some problems. On one trip to Key West, unusually cold temperatures in south Florida caused the power company to rotate blackouts of different neighborhoods and areas of town. I went to the utility company in Key West and explained that I was doing dialysis at the campground. They agreed to give me enough time to complete the treatment before blacking out our section of town the next evening.

"Not a Good Trip"

We had the class C coach for 10 years, and our longest trip in it lasted one month. This was a journey with friends to New England and the Canadian province of Nova Scotia (NS). It was not a good trip. Although we had many enjoyable experiences, problems with the dialysis machine and the motor home definitely took the edge off our enjoyment.

The trip was our first with the COBE Centrysystem 3 machine. On several occasions, during setup, an internal hose on the C-3 would pop off and make a small flood inside the machine. Phoning the COBE technician, I learned to put the hose back on and was able to get a treatment. In Boothbay Harbor, ME, the CRT (computer screen) burned out. The machine cannot be operated without this screen. I had already been advised before the trip by COBE that I could not receive machine service while in Canada. I called COBE, and they arranged to have a technician meet us in Portland, ME, at the Federal Express (FedEx) office, where the new CRT was flown in. The FedEx people were very cooperative and allowed us to plug into power and water at their office so the tech could check out the machine.

This incident is a good example of the wonderful equipment service that we have always had on the road from COBE, whose technicians have repaired our machines at many campgrounds.

"Our Scariest Experience"

The worst was yet to come on this trip. Our itinerary called for us to drive to Peggy's Cove, NS. The road there is built on top of the rocks and boulders that drop off to the sea.

Our friends were ahead of us in their car, and we communicated by citizens' band (CB) radio. We stopped on a narrow pull-off to look at the beautiful scenery. Our friend thought he was out in the road a bit and radioed for us to back up. Doing so, our right rear wheels slipped off the pavement. The coach slowly slid down on the right side, but fortunately stopped short of rolling down the embankment. The coach, however, was leaning at a very sharp angle on its heavy side, which contained the dialysis machine. I thought we might roll over and told Irene to slowly crawl to my side in order to get all the weight we could on the high side. Then we both exited the vehicle to safety. My first concern was for the dialysis machine, not the coach. So, my priorities were quickly revealed.

A normal-sized tow truck came from Peggy's Cove and tried to pull the rear of the coach back on the road. This only made the front end tend to slide off, too. A heavy-duty tow truck was called in from Halifax, NS. The small tow truck was attached to the front of the coach to prevent it from sliding off while the big one pulled the rear end up. They finally got us back on the road. I guess that was our scariest experience to date.

Overland Express

In 1993, while planning for retirement in 1995, we opted for a larger coach—a 38-foot Overland class A diesel pusher. The class C was only 24 feet.

The Overland offered us several advantages over the class C, including a separate bedroom in the rear. And having the engine 30 feet to the rear virtually eliminates engine noise and heat in the cab area—a real advantage.

I might mention here that, if you are thinking of adopting the RV lifestyle, and, especially if you plan to do dialysis, you need to have some pretty good plumbing, electrical, and mechanical skills. All motor homes have problems. It is the nature of the beast. It may have something to do with the complexity of their many systems. Another may be the fact that an RV is continually subjected to the equivalent of an earthquake as it rumbles down the road. I was trained as an educator and counselor, but I always liked to tinker with machines. So, I educated myself in the technical areas needed to keep up a motor home.

"A Great Adventure"

As soon as we had worked out most of the bugs, we put the Overland to the test—a month's trip out west. It was a great adventure. We visited the Grand Canyon; Zion National Park (NP); Bryce Canyon NP; Lake Powell; Monument Valley; Mesa Verde NP; Durango, CO, where we rode the Durango-to-Silverton narrow gauge railroad; Golden, CO; and Rocky Mountain NP.

We had no problems with dialysis, but did have one problem with the Overland. As we were descending a 10,000-foot mountain, one of the front brakes went out.

This caused the Overland to pull to one side when braking, but we drove on to Golden, where I determined that it was a stopped-up hydraulic brakeline to one of the front brakes, which Irene and I replaced in the campground.

I know I am mentioning a lot of problems we have had, but I want the reader to understand that this is all part of the landscape if one wants to dialyze and travel in an RV. On the other hand, I can't emphasize enough how much fun this kind of travel is. There is nothing like traveling with your own home and sleeping in your own bed. Nor do you have to stop to go to the bathroom or get something to eat.

"A Lot of Preparation"

Before we leave home for our dialysis-on-the-road, there is a lot of necessary preparation. The dialysis equipment is in an upstairs bedroom. We roll the machines out onto an upstairs porch. A small hoist with a boat trailer winch and steel cable is mounted there. The machines are hoisted down to the first floor, then rolled down the driveway to the street, where the Overland is parked. Two sets of 10-foot boards, supported in the middle by two two-foot ladders, form a ramp that allows us to push and pull the machines from the driveway up into the Overland. Upon returning home, the reverse operation is necessary.

Due to the effort involved, we have decided that a trip must be at least one week in length to make it worthwhile. Now that we are retired, we usually leave the machines in the Overland during the travel season so we may make a trip with short notice.

We have found it very useful to have checklists to make sure we have everything before leaving home. This is especially important since we are doing dialysis. There are three checklists: one for leaving home (turn off the hot water heater, hold the mail, etc.), one for the motor home to make sure it is mechanically ready for the road, and one for dialysis supplies.

If a lengthy trip is planned, I call each End-Stage Renal Disease (ESRD) Network along our route and request the names, phone numbers, and addresses of all the dialysis facilities along the route. This is in case we have equipment failure and the machine cannot be repaired in time for my next dialysis. I carry a letter from my nephrologist which states I am a stable patient who may need back-up dialysis.

I also take the medical records that are usually required for a transient treatment in a dialysis facility. Unfortunately, however, transient dialysis has become harder and harder to obtain. Most facilities have hard-and-fast rules which usually require 30 days notice before a treatment can be scheduled. Obviously, this does not meet my need when I require a back-up treatment due to equipment failure on the road. Fortunately, so far, COBE technicians have been able to repair the equipment on the road in time for the next treatment. One time in North Carolina, it looked as if the machine could not be repaired, and I attempted to get a backup treatment, but was told they would not take me without 30 days' notice. The COBE technician came on a Saturday, something he is not required to do, and repaired the machine at the last minute.

Water Treatment

Anyone contemplating dialysis in an RV should pay very close attention to water treatment. In our travels, we have encountered all kinds of water sources, so it is necessary to have a "worst case" water treatment system.

An RO is required to protect against the possibility of bacteria in the water source as well as to remove ionic content. Chlorine and chloramine in municipal water supplies can be very dangerous to dialysis patients, and only a small exposure can cause hemolysis (the breakdown of red blood cells). A large amount of carbon is therefore required—preferably two carbon tanks with the ability to test for chlorine and chloramine in between using highly sensitive test strips. This way, if one tank breaks through during treatment, there will still be a backup tank. Sediment, mud, and organic particles can be really bad in some parts of the country, especially Florida, so we take plenty of five micron prefilters. The RO manufacturer is a good source of advice on water treatment.

"Low Electrical Voltage"

Another problem we have encountered is low electrical voltage in some campgrounds. Many times, the wiring is old or inadequate. We have found it is best to hook up a separate electrical line dedicated to the dialysis machines. That way, if the RV trips out due to low voltage, the dialysis equipment will be unaffected.

It is also a good idea to have the RV equipped with a generator. If all else fails, the dialysis equipment can be operated from that.

Conclusion

In summary, it is possible to travel in an RV and do on-the-road hemodialysis. In my case, this has made all the difference in my adjustment to life with ESRD. It has given me a wonderful sense of freedom and independence—a feeling that I am not tied to home, that I can enjoy travel and vacations like anyone else.

I believe this ability to travel with the dialysis machine in an RV has elevated my HHD lifestyle nearly to the level of a transplant patient. There are problems with motor homes and the dialysis equipment. With the proper advance preparation and contingency planning, however, these problems can be overcome.

The end result? A wonderful lifestyle of RV travel that Irene and I wouldn't trade for anything. We take pride in the fact that we have learned to overcome the problems and have been able to take dialysis-on-the-road. Our travels have given us a wealth of wonderful memories as well as a few "tall" tales to tell.

George Harper lives with his wife and traveling companion, Irene, in Rome, GA. He has been a home hemodialysis patient for more than 18 years and has done dialysis-on-the-road for more than 16. He is very active with the AAKP and is a past vice president and board member of that kidney patient group. Both he and Irene were recipients of the Samuel Orenstein Award, AAKP's highest honor for service to the organization. Harper is also a past board member of the National Kidney Foundation. He is the patient perspective editor for a nephrology journal and has been a contributor to other nephrology journals. He is also the patient member of the Medical Review Board of ESRD Network 6.

Harper would be happy to talk with any reader interested in RV dialysis-on-the-road. Contact him at
11 London Lane, SE
Rome, GA 30161-9467
phone (706) 232-0793 e-mail: harperg@mail.floyd.public.lib.ga.us