What made you want to become an ambassador?

Mark Johnson

I was diagnosed with ESRD 10 years ago. I struggled for 3 years keeping my small restaurant in operation and treating my kidney failure. But, the increasing demands of dialysis and my worsening health forced me to finally give up my life’s passion.  For several years, I was depressed. That changed 3 years ago when I saw a notice at my dialysis unit for a patient representative to join the Heartland Kidney Network. I found myself in a new world where I can talk with other kidney patients and my day-to-day struggles are understood. I soon became a member of the national organization, the NPFE-LAN. I have been able to have an input in a small measure in the lives of fellow kidney warriors.

Since CMS is such an integral part of my continued existence, my next step in patient advocacy needed to be in political activism on the national level. This allows my voice to be magnified exponentially. 

How has being an ambassador helped you?

Personally, being an ambassador has allowed me to be a part of something much greater than      myself. Instead of dreading waking and being hooked up to a machine for 4 ½ hours 3 times a week, I look forward to the day’s challenges.                                                                  

What have you learned from being an ambassador?

An IMMENSE amount of behind-the-scenes work by a large support group (the AKF staff) is essential to make my job as ambassador successful.         

Why should others become ambassador?

The more involved, the louder and more effective our voice.

What is something you’ve learned about kidney disease and dialysis that you wish you knew a lot sooner?

I crashed into kidney failure with 170 pounds of excess fluid. At no time during the previous years did a physician perform a simple test to check my kidneys. This needs to be done annually.

How would you like to stay connected to other advocates?

Social media

What are your best tips to get through the dialysis treatments?

Do NOT just sleep during dialysis. Find something you are interested in that is possible to do. Read a book, listen to audiobooks. I occupy my time with my touchscreen laptop.   

What do you wish elected officials knew about dialysis patients?

We want to be productive members of society. We need their help to accomplish this goal. 

Do you have any advice for newly diagnosed kidney patients?

Your life is NOT over. You can thrive, not just survive.
 
How does it help having a family member be part of the process?

The vast majority of people do not have any concept of what it means to have ESRD. My mother for   several years was my care partner when I was on home hemodialysis. She saw me through my struggles both physically and emotionally.

What do you wish other family members knew about kidney disease or knew about helping others?

It would be helpful for family members to witness the dialysis process so that they have somewhat of an understanding of what a kidney patient needs to do to stay alive. They also need to have their own kidney functions medically checked.