I write to my fellow kidney patients as a dialysis old-timer. I wear that title as a badge of honor because, with my background, I expected to die in my early 20s. Instead, I have not only survived but have lived well with kidney failure for the past 26 years. There have been key people along the way who have helped me, the first of whom is Irene, my wife and home dialysis helper for the 21 years I was on home hemodialysis (HD).
Dialysis: In the Nick of Time
My two brothers died before me of the hereditary nephritis that afflicted my family. I survived because I was the youngest and, luckily, did not experience kidney failure until chronic dialysis treatments had become available. When I was told I had to go on dialysis, it came almost as a relief because, from about the third grade on, I expected to die of the disease as my brothers had.
For most people, a sudden and unexpected diagnosis of kidney failure comes as a terrible shock. You wonder: “Will I be OK? Will I lose my job? How will this affect my wife and family? How will my friends accept it?” Plus, when the news comes, you are already pretty sick.
The good news is that you will feel much, much better once you start dialysis. I was ecstatic to feel so much better and to have escaped what had been tantamount to a death sentence. I started planning all kinds of things I wanted to do once I started feeling better. This included traveling in a motor home (with my dialysis machine!).
Work and the Family
A person on dialysis doesn’t have to stop working and shouldn’t, in my opinion. Work helps give our lives meaning and gives us a sense of self-worth. The Americans with Disabilities Act requires your employer to make reasonable accommodations for your medical condition so that you can keep working.
A chronic illness places stress on family relationships, but good families adapt and go on. Be careful not to slip into the “sick role.” I allowed myself to act as if I were perfectly healthy. I assumed I could do anything I wanted unless shown otherwise. On the other hand, don’t get into the denial game, either. Don’t think you don’t have to stay on your diet, or that you can get off dialysis early without consequences. You have a serious chronic condition, and you will have to accept it 100% and spend time and attention managing it successfully. If you steer carefully around these pitfalls, you can live a good and long life with kidney failure, as I have.
Starting Home Hemodialysis
Your medical team should explain all the different treatment options to you so that you can make an informed decision. Do some research on your own. There is a wealth of information on the Internet. Learn more about the different options and then make a choice that works for you and your family. When I started dialysis in 1980, I chose home HD, which has always been the gold standard of dialysis therapy.
The main reason I chose this modality in the beginning was because it allowed me to dialyze at night so that I could keep working. But later I realized it had other advantages too, such as allowing me to better control the quality of care I received. After all, there is no place like home! I enjoyed reading my mail, watching TV, and even eating dinner while on dialysis.
PD vs. HD
Peritoneal dialysis (PD) is a type of treatment that allows you to avoid putting needles in your arm. Instead, you drain a dialysis fluid into your abdominal cavity through a surgically implanted catheter. PD can work well for a few years, but eventually the abdominal membrane becomes scarred (limiting the effectiveness of the treatment) and/or peritonitis become a too frequent problem.
HD is a longer-term therapy, but it does require the insertion of needles into a vascular access (a way to gain I remember that, at first, it was very hard to seemingly harm myself by putting a needle in my arm, but it wasn’t long before I was doing it quite well. I would definitely recommend that you learn to “stick” yourself. It simply hurts less, and because you control it, it is less likely that your access will be damaged. You must protect and preserve your access because it is your lifeline.
“More Frequent or Longer Treatments”
The latest (but historically oldest) trend in hemodialysis is more frequent or longer treatments, which usually can be done only at home. Regular three-times-per-week dialysis, usually performed at a dialysis facility, substitutes for only about 10% of normal kidney function, whereas performing dialysis more often or for longer periods tends to make up for more of your lost kidney function. Additionally, medical studies have found that short daily dialysis (two to three hours per treatment) or long nocturnal dialysis (performed during the night while you sleep, six to seven nights per week) have many added health and lifestyle benefits.
One of the weak links in home HD is that you will need a helper, someone who will be trained with you to set up the machine and perform the treatments. In truth, the day-in and day-out routine of dialysis can be a lot to expect from someone. I was very fortunate to have a committed wife who helped me all those years.
To Transplant… or Not?
I stayed on dialysis for 21 years because, when I started the treatments in 1980, the one-year graft survival rate (how long the organ keeps working) for kidney transplants was only 50%, and only two of every three transplant recipients made it through the first year. By the turn of the 21st century, tremendous progress in transplantation led me to go that route, and I received my kidney in 2002.
Again, it is very important to study and inform yourself of the facts about the various treatment options before selecting one.
One thing I liked about dialysis was that it was very predictable. If done right, it would do exactly what it was supposed to do every time. Even today, it is hard to predict how a transplant will go. Most of the time they go well, but they can still fail or have serious complications, all of which are very hard to foresee. I have been very fortunate, and my transplant has gone very well for almost five years now.
Are You Getting Enough Dialysis?
As I alluded to previously when I discussed more frequent dialysis, the most important thing for you to do if you are on dialysis is to make sure you get enough dialysis. Many experts believe that it is not possible to get too much dialysis, but it is very easy not to get enough. If you receive your treatments in a dialysis center, ask for more dialysis, not less, and don’t ask to get taken off the machine early.
The Renal Diet
Whether you are on dialysis or have received a transplant, you need to follow a “renal diet,” which means that you need to stay away from certain foods, such as those high in sodium (salt). I believe that sticking closely to my renal diet is one of the reasons why I can proudly say that I’m a long-time kidney disease survivor.
If you’re on dialysis, there are some simple ways in which sticking to your renal diet can be made easier. When eating out at a restaurant, ask them not to use salt when they’re cooking your food. When you’re in the grocery store, read the food labels to see how much sodium those foods contain. You need to limit your sodium intake because sodium makes you thirsty, and when you get thirsty you drink! Because your body can no longer eliminate fluid, it will need to be removed by dialysis. And carrying around too much fluid between dialysis treatments (fluid overload) can lead to complications, which you really want to avoid.
There are other aspects to the renal diet. Ask you renal dietitian for suggestions on how to eat healthy and still eat well. (There are a lot of tasty recipes out there for kidney patients!)
Once you begin to feel better on dialysis and get control of your treatment, you may want to start helping other patients. That is the last stage of your rehabilitation. I would recommend that you associate with other patients in organizations such as the American Association of Kidney Patients and the Renal Support Network.
Lori Hartwell is a great example of a patient who wanted to help other patients. She did it so well that she was able to found the Renal Support Network in 1993 and has helped countless patients ever since. In 2002, I founded the Georgia Association of Kidney Patients in my state. Helping others can be very rehabilitative.
As you turn attention away from yourself and towards others, you might use humor to put people at ease about your disability. My kidneys quit working shortly after I began dialysis. I used to tell people that “I haven’t been to the bathroom since October 1, 1980,” or “I’m the only man listed in the Guinness Book of World Records ever to drive nonstop from Atlanta, GA, to Miami, FL.” I would always get a laugh, and it would help make people comfortable with the fact that I was on dialysis.
Finally, as you react to and cope with a diagnosis of the failure of a major organ system, you may find, as I did, those inner strengths you didn’t realize you had. Your survival instinct will come to the forefront, and you will do what you have to do to survive. You will feel new confidence in yourself for having overcome seemingly insurmountable odds, and this confidence will help you with other aspects of your life and simply make you a better person.
I wish you the very best of luck as you overcome the challenge of kidney failure and go on to live a happy and successful life.
About the Author
George Harper, MEd, EdS, is a former home hemodialysis and current transplant patient who lives in Rome, GA. He is also an Editorial Advisory Board Member of Nephrology News & Issues. In 1987, he led an effort to convince the Georgia legislature to require informed consent for dialyzer reuse. In 2000, George was instrumental in convincing the legislature to license the state’s dialysis facilities and set standards to protect patient health and safety. In 2002, he founded the Georgia Association of Kidney Patients.
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