The Unprepared Patient
This blog post comes to us from our Co-Investigator, Peter Woods.
During my years as a Sergeant for the NYPD I thought I saw and experienced everything. As a matter of fact, I think I saw too much. I was a first responder at 9/11and spent months working at Ground Zero. I decided to retire when my job was done at Ground Zero. I was hired by the US Marshall service as a subcontractor to do Court Security at the Federal Courthouse in lower Manhattan. I had major plans to move on with a new career and spend more time with my family. There is an old saying “When you make plans God laughs”. One day I wasn’t feeling well. I went to the doctor and had several tests conducted. I was diagnosed with an auto-immune Kidney disease and an auto-immune Lung disease. So much for working at Ground Zero and the EPA stating that the air was fine, but that is a subject for another day.
As I was being treated for my Kidney disease I brought up the question of Dialysis. It was not really addressed and I was told that my numbers are ok and not to worry about dialysis. So I went on with my life until I ended up in the emergency room. My Nephrologist met with me and she told me that my numbers were very bad and I have to start dialysis. The date was June 17, 2008 and I had no idea what I was in for. I had so many questions and sometimes got bad information. I remember asking about dialysis just before surgery to insert a chest catheter. One of the staff told me not to worry because I can get a kidney transplant and things will be fine. Are you kidding me? Like kidneys grow on trees and you can just pick one out for yourself.. I decided I needed to educate myself. I call this my Shock and Awe period in my life.
First, how to deal with dialysis. I felt I no longer have control over my life and I need to take it back. I had to learn how to accept dialysis and I have to make it my best friend because it is keeping me alive. I also had to learn how to deal with loss. The loss of a job, the loss of your freedom, and eating and drinking. So many restrictions on so many aspects of my life. I also had to deal with the affects of dialysis on my family. I had to explain to my children who were small at the time that I will not be around every other day for four hours and when I come home I will not be feeling well. I explained to the kids that I need my blood washed and it goes through a machine to wash it. My youngest came up with the name wishy washy. So when she didn’t see me she would ask me if I had to go to wishy washy. I think this is how she dealt with my dialysis.
For me, it was on the job training when it comes to dialysis. Every dialysis patient knows what it is like. I still to this day cannot believe how ignorant and misinformed I was. This is why I volunteered for this study. I do not want another patient to go through what I went through. Knowledge is true power. Especially when it comes to dialysis.
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