Become a Smart Patient and Save Your Own Life - Part 2: Empower Yourself

In Part 1, Follow the Money, we described the adverse consequences for kidney failure patients of in-center dialysis economics and inadequate dialysis training of nephrologists. Treated with what is described as “adequate” dialysis in dialysis centers, fewer than four out of five survive the first year and fewer than 40% survive 5 years… and they feel ill too much of the time. The answer for feeling well and living long, known and practiced for decades, is longer, more frequent treatments, possible only at home.

Dialysis centers provide the training, supervision, equipment and supplies for home dialysis, but vary in the home options they support, if any. Larger metropolitan areas have many centers from which to choose. Don’t hesitate to talk to several, if your dialysis choice does not seem to be fully supported, or you don’t like the way you are treated. Seek to talk with their patients sharing your dialysis preference. While the choice for in-center patients must be largely dictated by proximity, home patients typically need to visit their center only once a month after training is completed so location is much less important. I would not hesitate to travel 100 miles or more to a center that would support my home dialysis choice, if necessary.

In your first meeting with the home dialysis nurse, be on guard for another adverse consequence of the cost battle between Medicare and the dialysis industry. If your nephrologist has not specified hemodialysis, you may find yourself on the receiving end of a pitch for peritoneal dialysis. While appropriate for a subset of patients (generally, only those still making urine), the long-term outlook for peritoneal patients is often no better than for in-center hemodialysis patients. Many must convert from peritoneal to hemodialysis within two years or so. There is, however, a benefit for the dialysis center; reimbursement from Medicare for training for peritoneal dialysis fully covers training costs, but not so for hemodialysis. Hence, the profit margins on peritoneal patients are markedly better—once again, money rears its ugly head!

All of us are expert in something—accounting or French cooking or plumbing or fly fishing or fire fighting or quilt-making (like my daughter). Have you ever noticed that when you ask someone about his or her area of expertise, but about which you know little, the conversation is usually short, shallow, and perfunctory? Often, you are just politely brushed off when it becomes evident you know hardly anything about the subject. Conversely, when you engage a person in conversation and it quickly becomes apparent that that you share a common interest and substantial knowledge, the conversation gets much deeper and mutual respect grows. You are also more careful as you realize the other person may know as much (or more) than you do.

Nephrologists and dialysis nurses share this human tendency with the rest of us. In this sense, they will treat you the way you deserve to be treated. It is no different than the way an auto mechanic treats customers. The more you know about cars, the more likely you will get quickly back on the road at the lowest cost. The more you know about your kidneys and dialysis, the better your outcome is likely to be. So another step in becoming a smart patient is to learn as much as you possibly can that is relevant to your illness and your treatment, not just to earn the respect and care you deserve, but also to become the manager—not the doctor---but the manager of your own care.

If you are still at Stage 4 chronic kidney disease (but not Stage 5, when people need it most!) you are entitled under Medicare to 6 hours of one-on-one education on every aspect of your disease, including your treatment options, by your physician or by a professional to whom he refers you (Kidney Disease Education, it’s called – ask your nephrologist about it). If you avail yourself of this hidden resource on your way to becoming a smart patient, you will be among only 2% who do.* Remember, nephrologists make smart patients and 90% choose home dialysis for themselves, while 90% of their patients wind up in the dialysis center!

* No access to this one-on-one education? Here is a free set of classes you can view any time.

Even more important, information you need in becoming a smart patient is available to you on this website. Beyond the invaluable information on the website itself, order a copy of “Help, I Need Dialysis,” the best book I have ever found for patients and care partners. You will learn not only why home dialysis is superior to in-center dialysis, but also why the various home dialysis options offer significantly different results…and much more!

Your home dialysis training will focus on how—the techniques required to operate your dialysis machine and related tasks—and on issues—the range of situations that you may encounter and how to recognize and deal with them. It will give you invaluable “hands on” experience under the guidance of your hemodialysis nurse. But the Home Dialysis Central website and “Help, I Need Dialysis” will take you beyond your training into why and a deeper understanding of what is really going on. Read Dr. John Agar’s blogs on this site, and you’ll see what I mean.

As you master the basics, you will want to go even deeper to learn about specific issues of interest or concern to you, including the most recent published research that might improve your care. It is impossible to overstate the importance of the contribution that Internet search engines make by placing access to the world’s information at our fingertips. The Web can play a major role on your way to becoming a smart patient. But it can also be a dangerous place. It is not called the New Wild West for nothing! The accuracy of information and the motivation of authors are often hard to discern.

There is a better way to search the web in becoming a smarter patient that may not be familiar to you, called Google Scholar. It is the door to the published scholarly literature of the world, including medicine, and contains nearly all peer-reviewed journal articles published in English. To access it, just type “Google scholar” into your regular search engine search box. Select ‘scholar.google.com’ at the top of the resulting list. The Google Scholar home page will come up with a new search box to use just like your regular search engine. When you type in your search terms and hit “Enter,” you will get a list of journal articles sorted by relevance or date or since a specified year. Clicking on an article brings up the abstract (summary) and the opportunity to purchase the whole article (some are free). The abstract alone will often provide the information you are seeking. Each article listed in response to your search gives you the opportunity to click on “Cited by (number)” to view all subsequent journal articles that refer to the original article. This enables you follow the research thread on any topic of interest to you. Or, you can also click on “Related Articles.”

This is powerful stuff! The language of medicine may be unfamiliar to you at first, but you can look up medical definitions with a medical dictionary or your regular search engine. Since you are focused on just your own kidney disease and just your own dialysis issues, you may be surprised how rapidly can get to a level to discuss important issues with your doctor and dialysis nurse. Remember that your purpose in becoming a smart patient is optimum care, not to show off your newfound knowledge or use up your valuable 20-minute monthly appointment with your nephrologist talking about anything that doesn’t bear directly on decisions about your care.

As a home patient, your 20-minute appointment is very important. I urge you take two things with you each time—your care partner and a written agenda. How often have you thought of something you wanted to ask (or tell) your doctor about—and how often have you left the office kicking yourself because you forgot? And, either you or your care partner should take notes during your appointment, and then compare your understanding of what your doctor said after your appointment. Your doctor’s advice and instructions are crucial to the best possible outcome for you.

Your agenda should be no more than one side of one page written in a terse, “bullet list” style that can be scanned in 10 seconds by your nephrologist, priming him to ask follow-up questions, as necessary. Include whether you feel better or worse than last month, weight change, any illnesses or symptom changes, dates and dosages of prescribed home-administered medications (ESAs, IV iron, etc.) whose dosage may be dependent on lab values (Hgb for ESA, TSat and ferritin for IV iron, etc.) to support dosage change decisions, significant changes in other illnesses treated by other doctors (including new prescriptions) and, finally, any questions you have that might affect your treatment.

When you prepare for your appointment, ask for copies of your lab test results from your nephrologist’s office, learn which tests are especially important for you and do your homework on how to interpret them. After you start dialysis at home and are drawing your own blood specimens, schedule your routine drawing a few days before your monthly appointment with your doctor, and have your dialysis nurse email you a copy of the lab report so you can include key results in your agenda. (I’ve found that taking a copy of the complete report with you protects against the few occasions when the report has not found its way into your patient chart or your nephrologist’s computer screen).

Doctors have their own mental agenda for each patient encounter. He or she may display mild annoyance when first confronted with the need to also respond to your written agenda in your brief time together each month. Your purpose is not to displace your doctor’s agenda, but to assure that your agenda is also addressed. Your nephrologist will come to respect you as a smart patient as you both seek (and contribute) to the same goal—your well-being and long life.

I’ve never met a home dialysis nurse who did not believe that home treatment was superior to in-center care—despite the economic conundrum facing his or her organization—and do everything possible to assure your success as a home patient. Schedule your monthly appointment with your home dialysis nurse for right after you see your doctor. Share your agenda, your notes and instructions and any new prescriptions from your doctor as well as any remaining questions. Call when you have concerns. Keep your nurse posted about any changes.

The last important resource to support you in being a smart patient and your own dialysis manager is your dialysis machine manufacturer through their patient support lines. Occasionally, you will encounter an issue you don’t know how to handle when setting up or performing a dialysis treatment. My experience over a dozen years was limited to Fresenius, when home, and NxStage, when traveling—always at night as we were doing nocturnal dialysis. Both companies provided excellent support by competent, unflappable people, Fresenius on a 10-15 minute call back basis, and NxStage on an immediate answer basis, never a significant hold.

Starting out, it is quite normal to be apprehensive about technical problems, particularly if you’re not technically inclined. I’ll never forget the advice we received from Chris, our first dialysis nurse who trained us, “If you can’t figure it out, just close the clamps, shut off the machine, cut the lines with a pair of scissors and go back to sleep!” We never reached that point because of the support we had from the two companies, and so even when we had a rare hard failure we were able to shut down in a more orderly manner. But Chris’ solution put it all in the right perspective. Worst case: you lose a cup of blood. Undesirable, but not life threatening…and extremely rare.

Kidney failure is almost unique among serious, life threatening illnesses. It offers you the opportunity to save your own life—to once again feel well and live a long time. Franklin Roosevelt, when he took office at the depths of the Great Depression, said, “The only thing we have to fear is fear itself.” So it is in committing yourself to home dialysis. Like driving alone onto a freeway for the first time, doing your own dialysis at home for the first time with no dialysis nurse around is undeniably scary. But fear fades as confidence grows over the first weeks. And the fear is replaced by a sense of empowerment, the feeling you are no longer dependent, not a captive of the dialysis “system” and the never-ending struggle over costs. You have become a smart patient and have moved on to optimum (not just “adequate”) treatment…and back into control of your own life.