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
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