Over the years, I have given a lot of advice to patients as their dietitian. Some of them know what I would advise in any given situation that I ask them to tell me what went wrong. I have been impressed with the knowledge and tenacity of my patients, having to manage a chronic disease on a daily basis with strength and peace.

This month I decided to ask them to share their tips on how to manage being on dialysis. This could be about any part of it: nutrition, fluid, treatment, managing other responsibilities, balancing home-life, work, other health issues, or anything they saw fit to share. Here are their responses:

My advice would be to keep trusting God. Let negative stuff go and seize the positive.” – Kimberly Alexander

Get ice from Sonic. It has more air in it, so you drink less fluid. They sell it in a 5# bag for $3.00.” – Chris O’Dell

Eat protein!” – Marshall Goats

Keep your appointments! Always watch your diet!” – Christine Jenkins

Eat right.” – Jessica George

Eat and drink Ensure as needed.” – Carole Eklund

Stay informed. Get as much information as possible. Keep your appointments, stick with the diet, and take your meds. It’s the total package – do it all. Get help if you are struggling with anything.” – Melba Jackson

Avoid fluid overload!” – Lashoan Smith

A good support system is crucial. Everyone from my granddaughter to my wife help me.” – Scott West

Have a little bit of everything.” – Isaias Contreras

Take your binders. Watch your fluids. Weigh yourself at home. Mentally log what you are eating. Keep track of everything, meds included. Note how you feel. Be diligent!” – Geoffrey Yuen

Try to keep busy most of the time. If you can’t walk, keep your mind busy by reading. You can also watch t.v. or walk your dog. Make yourself a goal a day and challenge the difficult obstacles with a positive mind. Exercise and talk to your loved ones. Do not isolate yourself.” –Jorge Rocha

Don’t miss a day of dialysis. You become very bloated and sick.” – Gloria Cuellar

Eat better. Go to all your doctor’s appointments. Don’t miss a day of dialysis!” – Phylicia Johnson

I like coming to dialysis because it helps keep my blood clean. It is the best place I have ever been to. Thanks to all the staff and nurses. I am doing my best to keep my diet healthy. Thank you to all there who help! – Mario Chavarria

Don’t do hemo, do peritoneal dialysis, if you can. It is more gentle. You can do it at night while you sleep. It helps me feel more normal.” – Stephan Smith

Pray, sun-up to sun-down. Then read a Joyce Meyer book. She is very inspirational.” – Shellon Johnson

Exercise for your heart, to keep blood flowing, and to avoid weight gain.” – Kim Townsend

You can have anything you want, just not very much, and not all the time. Don’t miss any treatments or cut them short. It’s only yourself that gets shorted.” – Robert Kistner

Watch you labs, and only treat yourself in moderation.” – Adrian Dawson

The best doctor for a patient is the patient.” – Ahmad Arbabi

Use Otter Pops to help control your thirst. They help keep portions small.” – Susan Cash

Stay away from dairy.” – Damion Fletcher

Take care of yourself. Stay positive. You are not down, you are up. And eat healthy!!” – Emmanuel Brown

Stay happy. Go to church. Serve others. Read your scriptures. Keep your family close.” – Ike Tupu

Just deal with it. Continue doing what you do. Don’t get depressed. It’s not the end of the world.” – Raynell Nicholson

Get familiar with the Kidney Buzz – an online information and support group for anyone with kidney disease. Also, include the patient’s family in all education and treatment plans for dialysis, so they can better support one another.” – Gregory Baker

Learn the WHY of all the instructions and recommendations that you receive, so it is easier to follow the advice.” – Lewis Corswell

Know yourself. Know your body and how the things you do affect it.” – Sandy Lee

Make sure you do personal research on reputable web sites to learn about treatments that may help you. Just because any old doctor says it, doesn’t make it true. He may not know you. Treating each patient is not an exact science. Patient treatment is not cookie cutter. You may need to play around with meds until you find the right fit for you.” – Trevis Lee

My best advice to share is to accept being on dialysis. Second is to stay busy and find a hobby – crafts, sewing, drawing, walking, reading, bowling, walking on a treadmill, and basketball. Even just to walk and window shop is good.” – Terza Hendricks

Exercise is the best solution to feeling great, along with diet choices.” – John Walker

Eat in moderation and watch your fluids.” – Derrick Hall

Drink enough water, but not too much!” – Marval Ririe

Make all of your appointments.” – Glenn Jennings

Just go. Go to dialysis.” – Alubar Altalac

To avoid getting on dialysis, follow a healthy diet and don’t smoke.” – Jacobus Vermeulen

Being on dialysis is a very hard life, and controlling the diet is not an easy task. However, with a good dietitian, treatment, and hard work, it is easier.” – Anonymous

By Christina Lund, RDN and her patients