For People with Kidney Disease, Hope is as Necessary as Oxygen

This blog post was made by Dori Schatell, MS, Executive Director, Medical Education Institute on July 29th, 2013.
For People with Kidney Disease, Hope is as Necessary as Oxygen

For People with Kidney Disease, Hope is as Necessary as Oxygen

Dori Schatell, MS, Executive Director, Medical Education Institute

Why is my first post to our new blog site about hope? Because hope is absolutely central to how renal professionals need to educate people around treatment option choice in chronic kidney disease (CKD)—or any other topic. Years ago, I remember reading a booklet that started out something like: "So, your kidneys have failed. Here are your treatment options." There was no acknowledgement of what it felt like to be told that you have kidney failure, and no sense that a good life could be pulled out of the abyss. Just the cold, hard facts, ma'am.

We do need facts. But, facts alone do not change behavior. (Think about it. How many of us know it's a great idea to exercise? And...how many of us follow through?) In health education, we are always trying to change behavior. We want to equip people to self-manage: to eat and drink (or not) in certain ways, to take medications at certain times, to report symptoms and get treatments. It's easy to tell people what to do, and even why to do it, though this is much less common. What's harder is to tap into people's motivation for following through.

That's where hope comes in.

People who feel as if their lives are over can't hear what you tell them. They are in full-on crisis mode. They're terrified, depressed, angry, guilty—or all of these at the same time. CKD may feel like the biggest catastrophe in their lives. Surprisingly, to me anyway, there has only been one study of hope in people on dialysis.1 It's from the UK, and only of 103 people. But this study found exactly what we might expect: those on dialysis who felt more hopeful were less depressed, less anxious, felt less burdened by their disease—and their mental functioning was better. We know that better mental function predicts less hospitalization and death.2 Hope may truly save lives!

Before we give a single fact to people with CKD, we need to start with, "You CAN have a good life, even if your kidneys fail." It's even better if we can share examples of people who have done just that, like my friend Nancy Spaeth, from Seattle, who went through a life and death committee in Seattle to get dialysis in 1966 when her kidneys failed at age 19. Today, she's a grandma of two, and retired from her nursing job. (Nancy is a terrific speaker, too! http://www.nancyspaeth.com/.) You no doubt have examples of your own that you can use.

Once people know that there is a chance to have a good life with CKD, we can help them use their coping skills to come to terms with the diagnosis. "Reframing" exercises can help them see that each experience in life, even kidney failure, can be looked at in more than one way. They can think about their life goals and what they want to do. Then, we can start explaining how they can have the life they are envisioning—by keeping a positive Attitude, getting Answers, and taking Action.

Need some help giving hope and helping people come to terms with CKD? We can help. Download our free How to Have a Good Future toolkit at http://www.lifeoptions.org/goodfuture. The first deck is called Coming to Terms, and can be used at any stage of CKD all the way through dialysis and transplant. There are speaker's notes, quizzes, learning objectives, patient handouts, and a how-to guide. You can adapt them, too—we didn't copyright them.

It doesn't cost a cent to give people hope—and you may be surprised at how much of a difference it makes in your educational efforts.

  1. Billington E, Simpson J, Unwin J, Bray D, Giles D. Does hope predict adjustment to end-stage renal failure and consequent dialysis? Br J Health Psychol. 2008, 13:683-99
  2. Lowrie EG, Curtin RB, Leain N, Schatell D. Am J Kidney Dis. 2003, 41:1286-92

Tags: lifestyle, hope

Comments

  • Dori

    Sep 7, 8:58 AM

    I'm glad that your transplant has been such a blessing for you, Carole, and that you have no regrets. :-)

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  • Dori

    Jul 27, 2:25 PM

    Hi Carol,
    If you did any home dialysis treatment and would like us to review your book for possible inclusion in our "Helpful Products Catalog" (http://www.homedialysis.org/life-at-home/helpful-products), just send us a review copy. Electronic is fine. :-) Our contact information is here: http://homedialysis.org/about-us/contact.

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  • Carole Imber Soloff

    Jul 24, 6:43 PM

    While on dialysis for almost two years, I wrote a book in both poetry and prose which I published in 2010, one year after I received a kidney from a Good Samaritan donor. I received my transplanted kidney on April 29, 2009, a date that is etched in my memory.

    "And then I Saw a Rainbow, the Journey of a Dialysis" is not just my story but it the story of every dialysis patient who rides the roller coaster of both hope and desondency while on dialysis.
    www.kidneydiseasehope.com

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    • Carole Imber Soloff

      Sep 6, 3:34 AM

      Dear Dori,

      Having been fortunate enough to receive a kidney from a living donor in 2009, I have been blessed to be living a good life for the past 7 years.
      I have been extremely careful to take care of myself, never missing my meds, eating well and exercising a bit everyday. However, because of my age, I will be turning 75 in February, the length of time I have been taking my meds and whatever wear and tear there has been on my body, I have in time been developing side effects.

      I do not regret my decision to have the transplant which has given me so many good years without dialysis and I will not be greedy. I still feel extremely blessed.

      Carole www.kidneydiseasehope.com

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