Dialysis from the Inside (Part 1)

My name is Marco Antonio Santana and I was born in Paterson, New Jersey.  My large family spent only the first few years of my life there before moving to Massachusetts, where we have lived ever since.  My childhood was very normal and included all the typical bumps and bruises associated with having four siblings.  I managed to keep myself away from broken bones and major health issues all through my childhood and through my teens.  

That all changed after I became a Preschool teacher after high school and was directly exposed to the myriad of germs and interesting other cooties that children can bring in with them.   A week before my 21st birthday I was diagnosed with End Stage Renal Disease after a quick and painful bout of streptococcal glomerulonephritis (Strep Throat).  My whole life to that point had never involved hospitals and medicines or being the “sick one”.  From that moment on it felt like my life was put on pause and that I could not ever dream of bigger and better things for myself.  I felt defeated by my onset of health issues and the fact that I was not aware of my options.  Dialysis for me started right around my 21st birthday.  It slowed down my personal, professional and educational life so as to better cope with the ups and downs of kidney failure. 

My emotions were all over the place and I basically felt as though I wouldn’t survive it so why fight it.   The first nurse that took care of me on dialysis, decided I would not be dying anytime soon and that she would guide me through this new journey in life.   I spent over ten years on dialysis, struggling to maintain a brave face while enduring surgery after surgery on account of my non compliant ways.  The nurses and doctors that guided me through all my years on dialysis made me feel truly cared for, watched out for and like I was a part of a family that fought hard to not let me fail.

I had never known the importance or even the function of my kidneys and how they would change my life forever. I had given up on hopes, dreams and ideas of doing the things in life that made me happiest.  Many years passed me by on dialysis and it was only because I chose to let them.  I became comfortable in the day to day battle.  Some days I felt ok but most days I felt rundown and depressed because I wanted there to be more.  I knew that I wanted to be more present in the lives of my family and friends and in my own.

I finally decided it was time to get my act together and with the patience and support of the team at DaVita, strive for a better way of life.  On April 30th, 2010 I received the phone call that changed it all.  The call that made doors open and window blinds open to let the sun shine in.  I was determined to be successful and this phone call made that first huge step for me.

Throughout my voyage in dialysis, the nurses, doctors and techs that truly took care of me made a difference, so much so that this is my focus now.  I presently work in the DaVita clinic I was a patient in and every day is a humbling experience.  I am in awe of the quality of care and compassion I received as a patient and that I can see them giving to all our patients now that I am on the other side.  I love that I am part of a team that is truly making a difference in peoples’ lives like they did for me.  As an ex-patient turned teammate I hope that I bring a different perspective to the clinic, teammates and especially for the patients.  I have firsthand knowledge of what the patients are going through each and every day on dialysis and it truly feels good being able to say, ‘Yes, I understand”.  

Since my transplant in 2010 I have been volunteering with the New England Organ Bank, running donor drives and doing presentations about my experience on dialysis and transplantation.  I have presented at the University of Massachusetts Medical School, Worcester Polytechnic Institute as well local high schools. I was also chosen to be the spokesman for National Minority Kidney Awareness Month and was part of a campaign that put my face on banners across a few New England states.  My story has reached the ears of a few congressmen in Massachusetts and while meeting with them, we have found personal connections through kidneys and politics.  I volunteer with the National Kidney Foundation on the kidney walks and round table discussions with patients within the different stages of renal disease.  I have even traveled to Maine to speak on behalf of the exquisite care I received at DaVita at a public hearing for Total Renal Care, Inc. c/o DaVita, Inc., acquisition of Assets of Eastern Maine Medical Center’s Dialysis Programs.  

My hope is to get involved with the DaVita Patient Citizens and offer my point of view and efforts to furtherize awareness of our dialysis community.  It also makes me happy to be able to find a little extra time to volunteer with the local housing authority’s elderly population by donating hundreds of cupcakes for their bake sales as well as teaching their grandchildren cake decorating skills.  I have the strength, support and opportunities now to work towards my goals.  I never thought I would want to go into the medical field.  Being a part of DaVita has opened my eyes to the possibilities of helping people like me that were once scared and in pain.  My future plans include going back to school in 2015 and becoming a nurse, building my cake business and giving back in any way I can.  While I am waiting to begin nursing school I am taking certifications in Medical Interpreting and American Sign Language so that I may add to my skill set.

Every day that passes makes me more grateful for the opportunities afforded to me and the amount of life skills I am privy to because of dialysis.   I figure if I can help at least one person feel a little more comfortable with dialysis or help them find the bright side of each day then I will truly be making the most of this second chance at life. 

Marco Santana

Centralized Anemia Manger

Davita Kidney Care

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