How To Be A Resilient Kidney Patient

Jen Jones

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I TRULY BELIEVE THERE ARE NO SUCH THINGS AS COINCIDENCES.

I’ve been hyper-focused on taking care of my kidney transplant. I felt the not so pleasant familiar symptoms when my native kidneys deteriorated. I contacted my Nephrologist, and he had me get labs drawn at once. My lab work showed that I had to adjust not only my medications, but the amount of meat protein that I consumed, and I needed to drink way more water.

My response to it all was to have a panic attack. Knowing I had to spend time in the hospital and the fear of losing my kidney transplant was highly upsetting to me. I let out all of my feelings about the situation the night before going to Walter Reed, but I maintained focus and optimism while I was there. Everything went well, and my kidney function improved. I was relieved, but at the same time physically and emotionally drained.

It forced me to put everything that I was doing on hold so I could recover and the Marine in me was guilty. Whenever I have to stop, it’s so hard to get back on track. One of my limiting beliefs that arise is if I “do too much” this will happen again. After I recovered, I pushed myself to do the things I know will make me better and regain focus. I still have residual negative feelings about my recent experience, but I remind myself how grateful I am that everything did turn out fine.

The other day I received the sign that now is the time to focus on Gen Resilient and kidney disease advocacy again. An email was sent to me with the question, how can one be resilient with kidney disease? I ended up almost writing a book to the gentleman who asked because, for me, there are steps to maintaining resilience with this challenging illness. My reply inspired me to create this video which includes tips for the kidney patient and their caregiver.



RESOURCES:

The American Association of Kidney Patients has a wealth of free educational resources that you can download.

I highly recommend becoming a member, it’s free to join and it’s the oldest and largest fully independent kidney patient organization in the U.S.

Carry a copy of this with you to medical appointments as a reminder to receive all of the information you need to have an effective dialogue with your medical care team.

 Kidney Precision Medicine Project

Kidney Health Initiative

KidneyX

Clinical Trials Transformation Initiative

Center for Dialysis Innovation

Kidney-friendly meal and nutrition resources.

(Not inclusive) List of support groups *Please check your local hospital or dialysis clinic as well.

An extensive list of other kidney disease resources provided by the Renal Support Network.  

Connect with your renal network for more resources and if you ever have to file a grievance with the dialysis facility.

Kidney Community Emergency Response

Medline Plus which provides Caregiver resources.

Caregiver Action Network

Facebook Groups and Pages: Kindness For Kidneys International, Inc.

Veterans Transplantation Association

Urban Health Outreach Media

Dialysis Bootcamp 101

Kidney Stories 2

Kidney Solutions: A Network of Transplant Experiences

Meshia’s Hope

YNOTT Foundation

The Iya Foundation - Kidney Resource Center

If you have an organization or group that you would like for me to include, please send me a message!

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