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Online Support Groups for Kidney Patients

By Denise Steininger, AAKP Ambassador

My name is Denise Steininger. I was diagnosed with IGA Neuropathy in Dec of 2017. My creatinine went from 2.0 to 4.0 literally overnight, and I was hospitalized for a week. I couldn’t understand what the big fuss was since I didn’t feel sick but my blood pressure was high, and I was bloated. It was a lot to take in, diet changes and dialysis looming over me. There were so many things to wrap my head around and the emotions I had were overwhelming. I was told I needed to see a nephrologist for the rest of my life.  I was scared and alone, but I started searching for positives and began to change the things I could change to hang onto what kidney function I had remaining. I asked about support groups and people looked at me like I was from another planet! Who could I talk to that was going through the same things? Nobody seemed to have answers.

I went online to Facebook and found a couple of groups. To join, they ask questions and your answers are reviewed.  Just like that, I was part of an online group!  Imagine, a group full of people with the same questions I had. Some were new to kidney disease and some were not so new, all sharing their experiences and their feelings. Old and young alike, we all are facing a new way of living.

I found the online support group very comforting. Of course, like anything else, you have to listen to your doctor and dietician and go from there.

The support group has helped answer questions about night alarms, buried catheters, showers, traveling with dialysis, sex. You name it, we talk about it. 

I’ve cheered people on who are going to get a transplant and cried for warriors that have lost their battle, but what’s most important is that we have each other. Somehow the road seems a little less dark and scary when you’re not traveling it alone.

The online group’s I belong to are:

Home Peritoneal Dialysis 

Living with Kidney Failure – End Stage Renal Disease (ESRD) Support Group

My advice, don’t go at this alone, seek others who are going through similar experiences and be open about your fears, concerns and successes. Social media has opened the door to a whole new type of support group, allowing those who don’t have a support group in their local community or who are shy meeting in person, the ability to connect with others. I encourage you to search out these support groups online, see if they are right for you. Also, visit https://aakp.org/center-for-patient-engagement-and-advocacy/support-groups/ to see if there’s a support group in your area.

About Being an AAKP Ambassador:

Once diagnosed, I began to read and educate myself online and found AAKP.  I joined as a FREE member, and began to get involved in as much as I could to help raise awareness and help answer questions for others. I took my involvement with AAKP to the next level and became an AAKP Ambassador for my state of Colorado. To learn more about the AAKP Ambassador Program contact Erin Kahle at ekahle@aakp.org .

The only way to overcome fear of the unknown is to learn as much as possible and help others understand what we go through every single day.” – Denise