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Navigating Kidney Disease: A Journey of Mind and Body

By Jennifer Jones, U.S.M.C., AAKP Vice President

My journey with kidney disease has been a profound lesson in the importance of nurturing both the mind and body.

In May 2020, I faced a challenging period of hospital visits while battling transplant rejection and severe anemia. This experience, coupled with the isolation of COVID-19, led to significant physical and emotional turmoil. However, it also taught me the vital role of the mind-body connection in managing chronic kidney disease (CKD).

The mind-body connection is all about how your thoughts, feelings, and beliefs can affect your overall health. It works in two ways: how you think and feel can change your body’s health, and whether your body is healthy or not can also change how you think and feel. I know that positive thinking alone couldn’t reverse my kidney issues. However, maintaining a healthy mindset is a crucial element in managing the disease.

So many practices are available, but I want to share five that have helped me nurture my own mind-body connection. These practices are not just personal to my journey with CKD; they’re common tools that can help anyone facing similar life or health challenges. They were instrumental in helping me through some of my toughest times, such as when I received my second kidney transplant in 2021, gifted by my deceased donor who decided that their last act of kindness on earth would be to donate their organs so that others could have another chance at life.

I continue to use these practices as I recover both mentally and physically, and I believe these practices can benefit you, too.

Key Practices for Nurturing the Mind-Body Connection

Embracing Small, Achievable Exercise Goals:

Start Small: Begin with manageable goals, like a 10-minute walk a couple of days per week to avoid feeling overwhelmed. Gradually increase the number of days and/or length of your walks.
Choose Enjoyable Activities: Select exercises you enjoy, such as chair yoga or resistance band workouts to keep motivation high. Consider enlisting a family member or friend for companionship.
Celebrate Every Victory: Acknowledge each achievement, no matter how small, to build confidence and a sense of progress. How you celebrate is up to you, but consider keeping a journal, tracking your efforts on a dry-erase board, or downloading an app on your smart device.
Listen to Your Body: Adjust your activities based on how you feel each day and remember that some movement is always better than none. However, when your body says to rest, please listen and rest.
Consistency Matters: Try to integrate these activities into your daily routine. If you need to pause due to health, pick it up again when you’re able, but don’t get down on yourself.

Practicing Mindfulness and Grounding Techniques:
5-4-3-2-1 Grounding Exercise:
This technique helps refocus your attention and reduce anxiety by engaging your senses.

• Notice five things you can see
• Notice four things you can touch
• Notice three things you can hear
• Notice two things you can smell
• Notice one thing you can taste

Cultivating Self-Compassion:

Mindful Acknowledgment: Recognize negative thoughts and understand they do not fully represent who you are.
Speak Kindly to Yourself: Address yourself with the same compassion and understanding you would offer a good friend.
Write a Letter to Yourself: Pen a letter from the perspective of a compassionate friend, focusing on your strengths and journey with CKD.
Celebrate Small Victories: Recognize and honor the small steps and achievements in your daily life.
Practice Gratitude: Shift your focus to what you have and can do rather than what you feel is lacking.

Nurturing Virtual Connections:

• Regular Calls/Video Chats: Schedule frequent check-ins with friends and family to maintain social connections.
• Shared Online Activities: Participate in virtual book clubs, online games, or cooking sessions to engage in shared interests.
• Finding Online Communities: Join forums or groups that align with your hobbies or interests for additional support and interaction.
• Express Your Feelings: Share your experiences and feelings and offer support to others in similar situations.

Becoming an Advocate for CKD and Regaining Autonomy:

Empowerment Through Advocacy: Engage in activities that influence policy and care decisions to regain control over your health journey. By raising your voice for better policies and care, you actively influence the factors directly impacting your life. Your efforts will have a butterfly effect, meaning you are also helping others going through a similar situation to yours, and paving a better way for those who have yet to be diagnosed.
Community Support: Connect with others facing similar challenges for emotional support and shared experiences. You may connect with someone who can act like a mentor to you, and you yourself may become someone else’s mentor. Both are gratifying experiences.
Stress Reduction: Channel your energy into advocacy to focus on positive changes, reducing stress, and improving well-being.
Don’t Do This Alone: AAKP’s programs, events, and initiatives provide resources for training and tools to learn how to articulate your experiences and perspectives, becoming a key player in the quest for better kidney care and health policies. We provide a community of like-minded individuals passionate about improving the quality of life for kidney patients and their families and supporting them in achieving their aspirations.

My journey has taught me how incorporating practices like these nurtures our mind and body connection and how vital they are for not just living with CKD, but truly thriving despite it. Each step we take in caring for our mind and body weaves together a stronger, more resilient version of ourselves. 

Jennifer Jones, USMC, retired, received her first transplant from a living donor in April 2015 and her second from a deceased donor in November of 2021.

While forward deployed to Afghanistan in 2011, serving as a Combat Camera Videographer, she experienced a sudden rapid kidney decline. After being medically evacuated back to the United States, she was diagnosed with a rare autoimmune disease called Membranoproliferative Glomerulonephritis, Type 1 Idiopathic (MPGN).

Despite facing numerous health challenges, Jennifer has pursued her passions and advocacy work with
the American Association of Kidney Patients (AAKP) and launched a business as a certified Resilience Practitioner. Currently, as the Vice President of AAKP, Jennifer is actively involved in various advisory boards and organizations, advocating for policies that enhance the quality of life for kidney patients and their families. She is deeply passionate about patient-centered education, community building, and removing barriers to living organ donation and innovation.