A diagnosis of kidney failure is life-changing. Because kidney failure has no cure, patients need dialysis or a transplant to live, and the vast majority of patients will be on dialysis. Adjusting to life on dialysis can be challenging. There’s a lot to think about, from choosing a treatment option, to finding new ways to enjoy your favorite activities, to managing a new diet.
We asked our Facebook community to tell us how they adjusted to the “new normal” of life as a dialysis patient. Here are six tips they shared.
1. Learn. Though it can feel like information overload in the beginning, patients who have been there agree that learning as much as you can—about your disease, about dialysis and medications, and about your body--is one of the most important things you can do.
Our Facebook follower Mon C. says you should “know your illness, research, research and research some more. If you don't know your body yet, learn it, listen to it, do something when something just isn't right!” Brenda R. says she adjusted by “educating and empowering myself as much as possible about this disease.”
Erin S. found that knowledge helped keep her calm. “I learned as much as I could. Looked up side effects of my meds so I wasn’t so scared when new things would happen to me daily. When you’re new at this and your body is changing, it can be really scary if you don’t know what’s happening.” Scott W. agrees: “The more you know, the calmer you will be.”
2. Lean on your support system. Our Facebook followers take strength from other patients, their families, their medical teams and their faith.
Santos G. says he adjusted to dialysis “by having faith and believing and talking to other patients—and having a strong family that stood by my side that keeps pushing me.” Shelby H. says “a super strong husband, family and friends to support me” helped her the most.
When it comes to the health care team, Scott W. says the key was “trusting my doctors, nurses and technicians and following their recommendations.” Beth H. says “I ask for help when I need it.” She also joined the Renal Support Network “to be able to get advice and education from people who have been through similar experiences.”
3. Develop good habits. Right from the beginning, according to Lisa E., it’s important to get with the program: “Eat right, take your meds, follow doctors’ orders,” she says. Bonnie S. encourages patients not to give up: “Change your eating habits and get out and exercise.”
Ron G. says, “Most important is watching everything that you put in your body.” Ken V. stresses the importance of “limiting my fluid intake.”
Adjusting to the treatment regimen can be especially challenging for patients who get an unexpected diagnosis of kidney failure. Dialysis takes a lot of time, but Matt C. warns patients, “Don’t be stubborn. Do your treatment as scheduled.”
4. Take one day at a time. Many AKF Facebook followers say that adjusting to kidney failure is easier if you take it day-by-day. Lisa E. says she got through it by “taking one day, one moment at a time, and having faith that all will be well, regardless of what the circumstances look like.”
“Sure, you have bad days, but when tomorrow comes, the bad day has passed,” says Virginia A. You can live a normal life if you put your mind to it.” Toney G. agrees: “Truly, one day at time. There are good days and really bad days, but I know that tomorrow will bring possibly a perfect day. I have those, too!”
5. Stay positive. Focusing on the positive—and accepting that dialysis is what allows you to live—“Always keep a positive attitude,” says Margaret O.
Erin S. says, “I remind myself every day I am as strong as an ox and can fight this battle!” Shelby H. recounts her adjustment: “I always knew I would not only survive but would stay positive and thankful every day for being alive. I did not allow myself to feel sorry for myself or to question ‘why me.”
Margaret O. adds a bit of realism, since it can be difficult to keep a positive attitude: “Remember this: it is OK to feel angry about your situation. You’re allowed to have those feelings—just don’t let them rule your life.”
6. Be your own advocate. Patients who have been there know how important it is to be an active participant in your own care. Beth H. adjusted to dialysis by “being my own patient advocate as part of my health care team along with my doctors, nurses and coordinators. Beth says she kept up with “every blood draw, took my own blood pressure and weighed myself every day to keep up with the changes, so I could easily catch possible problems.”
Mon C. says, “Take control of your health, including the health care team. Never give up!”
If you are new to dialysis, check out the American Kidney Fund’s FIRST30 educational campaign for tips and tools to help you adjust to your “new normal.”