Why did you sign up for this???

I was diagnosed with Kidney Disease July 3rd of 2013, a little more than 2 months ago. I was 31 years old. I had somehow made it through 31 years without knowing that I had only 1 kidney and the one that I did have was less than enthusiastic about normal operation. So I started dialysis on July 15th and learned to live a different kind of life. 

Life on dialysis is scary and complicated but I was determined to not let it rule me; I would still be in charge of my life. I only missed about 1 week of work and then I was back to a fairly normal schedule working a full 40 hrs a week; tired and stressed to the max but still determined. At the advice of the clinic social worker I began to seek out support from others on dialysis. I have joined several facebook groups and online forums and have met a ton of amazing inspirational people. 

I have also learned that there is a HUGE gap in the services provided by insurance and medicare. Some people are lucky and have good jobs or spouses/ family that can support them, but others are not so lucky. 

They struggle to afford medication, basic utilities or food. People are disabled and require a wheelchair or walker but cannot afford to install a wheelchair ramp to gain access to their own homes. Patients are often left feeling alone and scared and have no idea where they should turn for help. Dialysis clinics offer what they can but at the end of the day they are limited to what the corporation allows them to provide. New patients facing dialysis have little to no idea what to expect from dialysis, they don't know enough about the process or what is happening with their bodies to be an effective advocate for their own treatment. 

I am establishing Oregon Kidney Outreach to help bridge this gap; to help patients find resources and to be a resource when there is no one else to turn to. To educate patients about dialysis and what to expect and how to be a good advocate for themselves. Most of all I want to create a community where people can get in contact with someone in their own community, someone who knows what they are going through and who can help take some of the mystery out of the process. I know it will be a long road and I fully have my work cut out for me, establishing a non profit is no easy feat, but one step at a time it can be done!   

I want to thank those who have supported and encouraged me since being diagnosed with Kidney Disease, I would be nowhere without my amazing family.