An Accidental Hero… The true story of a dialysis family Pt 1

How did I accidentally end up working in the medical field during a global pandemic? Life sometimes takes you in directions you never could have imagined. Never in a million years would I have guessed that me of all people would be labeled a hero for going to work. By the end of this story I would have learned so much about a disease that not that long ago I knew nothing about. The thing is that after this life changing experience I am obligated to share the knowledge I have because in the not so well known world of dialysis there are two groups of people that do not get the recognition or respect from the world that they so deserve. Before I get into that we have to rewind quite a bit.

First let me introduce myself, I’ve been called many names over the years but most people know me as Rick or @Rickpiercings and lately @needlesbyrick. Back before we would’ve ever imagined that the world would change so drastically I started a career in body art at a small tattoo studio in Philadelphia. This was and is the best job anyone could wish for. I get to hang out with my friends who happen to be some very talented artists and support me and my family at the same time. As I typically do I dove right in and wanted to know everything there was to learn about the business and this new medium of body art that I would perform with a needle. I quickly learned that I had a skill with a needle that would bring me to levels in life that I had not imagined. At the time I was a young single father of two and not too long after I met Melissa, the girl who would become my wife, give me two more children and be by my side through everything that life could throw at us. Life was great.

My Wife’s mother Carmen was a force in her family and a hustler just like me. She was always smiling and cooking and trying to make a dollar. She was the glue that held her family together. It took a bit because Melissa was her baby and she was not willing to let go of her but once she got past all my tattoos and realized I spoke Spanish and would eat almost everything she gave me we got along great. She would teach me many things over the years about love, loyalty, cooking techniques and eventually a whole new skill with a needle.

One day I took Carmen to a doctor’s appointment at Temple University Hospital. Even though I didn’t know it at the time this appointment would end up changing all our lives. When we arrived I parked and we went in to her Nephrology appointment. I’m not going to lie neither one of us had any Idea what Nephrology even was. She didn’t speak much English so I translated for her. When the doctor came in to see us he was a really nice young guy that seemed super smart. He introduced himself as Dr Gillespie and what he told us was essentially that Carmen was at stage three kidney failure and we would need to start preparing her to eventually be on Dialysis. He asked if she had support at home and if we would be interested in learning about home dialysis. This was my introduction into the world of Nephrology. Not too long after I would be running a small hospital room in my house and a few years later while still grieving from the loss of the Matriarch of my wife’s family and the person that by this time was my right hand I would take another step into this world when I got the call that the doctors at the clinic that ran the home program liked me so much they were going to hire me to be a tech.

Now that we are all caught up on the short version of my background lets get back to the two groups of underappreciated people I was speaking about earlier. The first group are the patients and their immediate families and the second is the direct patient care staff.

First are the patients. They are the first that get my utmost respect and admiration. ESRD is what it is labeled. They call it end stage renal disease because at this point it is terminal. There are only a few options to stay alive a bit longer at this point, none of them are a cure and all have downsides. This isn’t something that people like to say because our job in the nephrology field is to keep them alive and as healthy as possible for as long as possible. You can’t even try to understand how strong a person has to be mentally and physically to grasp that this is their life. The most common treatment in the United States is Hemodialysis and it pretty much means you have to sit in a chair three times a week for about four hours and have your blood cleaned by a machine that removes all the extra fluid and toxins that your body doesn’t know how to get rid of. This is a physically draining process that is also dependent on the second group. A patient that sits down for a treatment knows that there is always a chance that they may not make it out of that chair. If you have sat in a clinic long enough you have seen your fellow patient and friends have to endure cramps worse than anything you could imagine if the fluid is removed to fast and their blood pressure drops, they have had to witness techs go into lifesaving mode when someone is crashing and too many times they have had to sit next to an empty chair when someone is not coming back.

Second is the staff, specifically the CCHT’s and the Nurses. In dialysis our day started no later than 4:30am. Add an hour of driving and time to get yourself up and ready. Most of us would get up around 2:30 to 3:00 am. If you were lucky enough to have a “short” shift you could expect to clock out around three three thirty to four. If you had the long shift you could expect to be done around 8pm. The one thing that kept me going was the fact that it was always better to be standing next to the chair helping than to be sitting in the chair. Remember these are human beings sitting in these chairs and everyday we go to the clinic we all go by choice the difference being that if I choose not to go anymore I am not going to die. My biggest flaw as an employee is that as a self described empath I could not turn off the human aspect of it in my brain. The type of employees they want are emotionless robots that can run for fifteen hours straight on no sleep and a little bit of coffee. Me on the other hand I would feel the pain, sadness, fear and anger that comes with this diagnosis and it would rip me apart every day. Helping them live a better, more comfortable life would become my driving force that would keep me going even as I let my own life fall apart due to the demanding schedules that we were required to keep. I would listen to all the stories of the past from some of the most amazing people I would ever meet. When you live a long life you see so many things and the thing I enjoyed the most was hearing all these stories. There was the city sheriff that would talk about his 50 year run transporting people sometimes as far as from California, the ex security guard that had his share of confrontations with the sheriff in their time, The vet that rescued his whole team is Vietnam, the Grandmother who started all.over in life when she tragically lost her child and took over as a guardian for all her grandchildren, the ex boxer that I always greeted as champ the grandmother who always gave me advice and loved to talk about her pride and joy thirteen year old granddaughter that she was raising. These are just a few and sadly most of them are not with us anymore. The problem with getting to hear all these stories is that as they start to accept and trust you as family the same goes vice versa. In this field you expect that there will be patients that die but no one was prepared to see them go at the rate that they were about to start leaving us. Years ago if you had kidney failure you didn’t have much time left but with the medical advances in the last 50 years or so we can now slow the process down quite a bit. Just as I was starting to get “accustomed” to this life here comes Covid 19 to complicate things.

To be continued……

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