Please allow me to introduce myself. Some of these articles you are reading, I wrote with firsthand knowledge of the topics—because I was a dialysis patient. I was on in-center hemodialysis for years before receiving a cadaveric kidney transplant.
Years ago, after some tests, my doctors told me that I had stage 4 chronic kidney disease. And soon after that, my disease progressed to end stage renal disease (ESRD), chronic renal failure.
I had no family members who could qualify as living kidney donors. My doctors recommended that I prepare for regular dialysis treatments as soon as possible, and that I apply at a hospital to be put on the waiting list for a cadaveric kidney transplant. And so began my life on hemodialysis.
At first I found my new life on hemodialysis to be very stressful. My emotional state was poor to begin with. I was still trying to process how ESRD might affect my life from then on. Evidently the disease had made me more irritable and had also impaired my memory and ability to concentrate. The constant severe itching kept me from getting a good night’s sleep, which further worsened my physical and psychological condition. Yet suddenly I had to learn and do a lot of things quickly: Take new medications; eat a renal diet; get a temporary access; go for regular hemodialysis treatments; get a permanent access. My emotions were raw, and at times I despaired.
But as time went on, the treatments began to make me feel better both mentally and physically. That “mental fog” I had been in for so long began to clear. I thought better of myself, and I gradually got used to this new regimen. In time, I even appreciated how it was helping me.
Other dialysis patients have experienced the same thing. They found the first months to be difficult; but as their condition improved, they began to appreciate how dialysis was helping them:
“I feel physically better and have more appetite now that I am on dialysis.”
“At first the PD [peritoneal dialysis] cycler was hard to sleep with. Now it is hard to sleep without.”
But I still wanted to ensure that I was getting the best health care possible. I had a very good medical team treating me. But they could not possibly know everything, especially since the field of medicine is advancing so rapidly.
And so I decided to do research on my own. I was determined to master this disease. I started learning as much as I could about kidney disease and about hemodialysis, the mode of dialysis I had chosen. I reviewed each of my monthly blood tests, and charted my progress with Microsoft Excel.
I found that understanding the nature of the challenge confronting me was a big help. Knowledge really is power. And it helped me stay in control of my situation. Other dialysis patients have realized that too:
“Information is the best way to overcome the fears of dialysis treatment.”
“It [dialysis] hasn’t changed, but I understand now how things work around there.”
“The more you educate yourself, the more likely you’ll…make good decisions about your healthcare.”
Health literacy is the ability of a patient to read and understand medical information, to help him make informed medical decisions. One scientific study has shown that patients with higher health literacy had better treatment outcomes. And the value of health literacy is not limited to ESRD. Other studies have shown how health literacy improves treatment outcomes for patients with diabetes, which many ESRD patients suffer from.
Have you started dialysis? Then just as it was with me, your first source of information will be your treatment team: Your nephrologist, other doctors, nurses, dialysis technicians and social workers. If there’s anything you don’t understand, ask. That’s what I did. But don’t limit yourself to what they are telling you. Do research on your own. Explore as many options as possible.
At first, as a new dialysis patient, your illness and your anxiety about it may make it hard for you to understand or remember all this information. So take copious notes. Or when you’re talking with a member of your treatment team, ask a loved one or friend to accompany you and take notes for you. Or if your treatment team is agreeable, record your conversations with them and play them back at your leisure.
And when it comes to interacting with hospitals, insurance companies, Medicare, and other organizations, do what I did: Keep careful records of every conversation. Record the name and telephone number of everyone you spoke with. Service representatives rotate frequently. Often the replacement didn’t know that his or her predecessor spoke with me, let alone what we spoke about. Having a complete history of everyone I talked to helped keep my discussions with them complete and consistent.
I believe that every patient is unique; what works for some patients may not work for others. Your symptoms may be more or less severe than mine. And perhaps you have other health conditions than I do. Perhaps you also suffer from diabetes, or high blood pressure, or some respiratory ailment.
But I urge you to do what I did: Take charge of your health. Ask tough questions. Get believable, understandable answers. Get second opinions—or even third opinions. Make sure you understand as much as you can about your health, your treatment, and your prognosis. Learn on your own. Learn whether your own current treatments can be further improved or modernized. Track your progress with charts and careful records. Ask your family to help whenever they can.
After all, it’s your life.
It’s your life.