Live Now is a movement to start living on your terms, with hope, optimism and strength. Kidney disease doesn't define your life - you do. It's time to get up, get out and live for today.
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Get back up and get on with life

After you've been diagnosed with kidney disease, you probably have more questions than answers. What is this disease? Why me? What are my options? How is my life going to change? Whenever you are faced with a change this big, it's natural to feel overwhelmed and these feelings and questions are often hard to deal with. Once you take a breath and pause for a minute you can begin to understand them. Then you can deal with them. You'll realize they're something you can overcome. That it is possible to do the things you love and still have a meaningful life.


Before his transplant, George was able to do Home Hemodialysis (HHD) and enjoy a full, active life with help from his wife, Carol.

Take control and start living your life

After being diagnosed with kidney disease, it's normal to feel anxious and uncertain about what you'll still be able to do and how your day-to-day life will be affected. One thing is certain. Kidney disease may change your life, but it doesn't have to control the way you live. With home therapies you can face the rest of your life with optimism and an attitude of empowerment knowing that a full and rich life is still possible. To take control of your life, follow the four steps listed below.

1. Be engaged in your care

It's important that you stay engaged in your care. Ask questions. Check out online message boards and user groups. Ask your doctor and nurses how to make contact with other patients. Take part in decisions related to your dialysis treatment. Follow your kidney-friendly diet and medication guidelines. Keep in close contact with your health care team. It's important to get involved in decisions about when, where and how you will be dialyzing. Studies show that the more involved patients are in the treatment selection, the better their outcomes.1

2. Be honest with yourself and others about your abilities and needs

There are some things you've done easily in the past that may now be a bit more challenging. Know what you can comfortably do on your own and don't be afraid to ask for help when you need it. Remember that if you're honest with yourself and others, you can get the help you need, when you need it. And you can focus less of your energy on your disease and more of it on living your life.

3. Be optimistic

It's easy to lose sight of what's really important when you're weighed down by overwhelming thoughts about your kidney disease. Try to stay upbeat about your situation and focus on taking care of yourself. Once your dialysis treatments start, you will begin to get relief from some of the symptoms, and you'll find it easier to look past your disease and start enjoying the rest of your life. For examples of how other patients stay upbeat and positive, watch any of the videos featured on this website. 

4. Help your family understand your needs

Once you've started dialysis, other family members may need to take on new roles. Your work schedule might change and another family member may have to help you make ends meet. It might be difficult for you to accept their help. You might feel guilty or even feel like you're losing some of who you are. It's important to remember that the changes you are going through are out of your control. Your family needs to know that, too. Since it's not “their” disease, sometimes it can be hard for them to understand what you're going through. They might not know what you can and can't do. They might not understand your dietary needs. All they need is a little help from you. If you need help explaining it, your nurse, social worker, dietitian, doctor and other patients in the clinic have access to tools and resources and can meet with your family. Once they realize how your disease works, your family will be able to help you get back in control of your life. They'll be able to help you live life to its fullest.



Learn More About Kidney Disease

American Association of Kidney Patients (AAKP)

The AAKP is a national non-profit organization founded by kidney patients for kidney patients. It's a great place to learn more about kidney disease, find important information and publications, and get support from people who understand exactly what you're going through. 
www.aakp.org
1-800-749-2257

Talk to someone who can share your experience

Renal Support Network (RSN)
The Renal Support Network is a patient-focused, patient-run organization. Their website provides a wealth of useful information and support for people affected by Chronic Kidney Disease (CKD) and on dialysis.   
www.renalnetwork.org
Patient-to-patient help and support is only a phone call away on the Patient HOPEline: 1-800-579-1970 from 10am to 8pm PST

Ihatedialysis.com

This patient-to-patient forum provides an online community that is very supportive of each other and helps new patients and experienced patients with kidney disease cope with the daily struggles of living with their illness. 
www.ihatedialysis.com

Home Dialysis Central

Sometimes, you may have a question or just want another patient's viewpoint. On the Home Dialysis Central Forum, you can post questions to, and read posts from, Peritoneal Dialysis (PD) or Home Hemodialysis (HHD) patients, as well as professionals.
forums.homedialysis.org

Home Dialyzors United

homedialyzorsunited.org

How To Cook for Dialysis Patients

Culinary Kidney Cooks

A dialysis diet cookbook written by health care professionals.
www.culinarykidneycooks.com

National Kidney Foundation

The National Kidney Foundation has a well-researched list of cookbooks for kidney dialysis patients. The Kidney Kitchen provides important support and education about dietary requirements and modifications that could potentially slow the progression of kidney disease and improve overall health outcomes.
www.kidney.org

Look online for kidney-friendly recipes and diet information

To find kidney-friendly recipes and diets on the Internet, search for the following terms:
Renal diet
Kidney diet
Dialysis diet
Kidney disease diet

Traveling on Dialysis

Dialysis Finder

A simple website that lets you search for a dialysis center anywhere in the country. You can find the address, contact information and get a map and general information on the area. Perfect for traveling while on In-center Hemodialysis.
www.dialysisfinder.com




1 Stack A, Martin D. "Association of patient autonomy with increased transplantation and survival among new dialysis patients in the united states." Am J Kidney Dis. 2005;45: 730-742.

 

Find more resources to help you make the best of living with kidney disease: Resources for Life



...in talking with patients, the most important thing for them to hear is they have hope. Where's the hope in treatment? And how can you structure the future so that I believe I can have hope? There is a lot of hope that's linked to successful treatment of kidney disease.  

Dr. Martin Schreiber, Nephrologist 
Chairman of Dept. of Nephrology and Hypertension 
Cleveland Clinic
Cleveland, OH 



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