Part 3: Giving, and Receiving, the Gift of Life
Last week’s installment: So here I was—I had just turned 17, in high school, and I started doing dialysis.
It was time to go back on dialysis. I was only 17 years of age and felt like an eighty years old man.
I used to be so frail. I couldn’t walk home from school without having to stop and rest due to extreme fatigue—the illness robbed me of all the energy and passion that I had. I would get so mad when walking the hallways of my school and seeing other kids laugh and smile. No one knew the horrors I faced day after day. Every time I had a check-up, I was told I shouldn’t be doing something that I was doing. Everything that I found important, the doctors seemed to think it was a risk.
My first love in life was running, and it was yet another thing I was not able or allowed to do. It was only a matter of weeks that I went from running strong to struggling to just walk from class to class. I can remember once in gym class we had to run a timed mile. I was unable to run at the time, so I just stood there watching. My classmates ridiculed me to the point where I had to choke back tears. The illness was nothing but torture for me. I did not know how much more of this life I could withstand. I often thought of just letting myself give up.
My sister wanted me to be in her wedding on May 5, 1990. I rejected her offer, stating that I’m getting called for a kidney that day. May 5th came and went and no kidney. But on May 8th, I received the call. I was out in the yard playing basketball with some friends. One of my friends asked me when I was going to have another transplant. I said, “I really don’t know, but I wish it was today.” A couple of minutes later, my sister yelled out the door, “You got a kidney!” I guess that I did not believe her or that I was in shock, so I just stood there. It seemed like a lifetime had passed as I stood there, praying that this was not some cruel sibling joke. Then, in all of her glory, with her deep ragged, yet sweet voice, my mother screamed, “Get in this house and get ready to go!” I was so excited.
The operation went well. The kidney was producing some urine, but not a lot. After about two months of different operations and strong medication, I was sent home with an understanding that I will have to start dialysis again. I was so angry and sad that after the long battle I fought all summer, I would not come out on top. One thing that I learned from St. Chris was to be thankful for what you have. The terrors I have seen on some of these poor children were enough to take down the strongest of men.
Upon returning to the hospital, we were handed the most wonderful news. My kidney started to work! I recall driving home with such hope and joy. When I got home, I told my younger brother that my kidney was working. For the first time I can recall, he hugged me and said he was beyond happy. This is the same little boy who would wake up in the middle of the night and walk over to my bed to see if I was breathing.
My second kidney had seen me through some amazing things—15 years of bliss. I realized my dream to treat patients in a hemodialysis setting as a patent care technician. I fell in love and married my best friend. We purchased a home and came to work at a wonderful little dialysis company known as DaVita. In those 15 years, I have had a share of scares, from cancer to heart issues. However, this kidney gave me the ability to race again. I once told my father after a treatment that I saw a pamphlet for the United States Transplant Games and that I wanted to participate. My father took me to Indianapolis to compete in the 1990 Games. I felt I finally can compete on a level playing field, racing against my peers. My father witnessed me racing to victory in my newly-found passions of cycling, road racing and swimming.
All good things come to an end. Shortly after I was married, I was told that I will need a new kidney. Life sometimes can give you lemons, and it is up to us to make lemonade. My wife was hired to work at The Florida School for the Deaf and the Blind in St. Augustine, FL. She moved out of our house in New Jersey to a condo in Florida. I was active on a waiting list and didn’t want to leave my list of doctors until I felt stable. This time, I opted for peritoneal dialysis (PD) over hemodialysis. For the next two years of my life, it was work and dialysis. I couldn’t stand being away from my wife any longer, so we sold the house and I started my move south.
It was a long hard road trip from New Jersey to Florida. My brother and his oldest son were helping me move south. As we drove south I started to get what I thought was motion sickness. Apparently, I was in and out of consciousness. My brother called 911, and I was picked up on Route 95 by a first responder. I was taken to a nearby hospital and diagnosed with peritonitis. As a result, I was unable to continue on PD, so back to hemodialysis I went.
Eventually I recovered and went to our new home in Florida. I had to find a center and I was lucky to have a DaVita center four miles from my new home. For the next two years, I was dialyzed in center hoping to get the call. April 1st rolled around, and I got the call! Off to the Mayo Clinic I went and after a very long wait, the kidney wasn’t a good match. At this point, I was excited because I knew I was high on the waiting list. The following month, I got the call again from the Mayo Clinic that there was another kidney. I called my wife’s school asking them to make her aware that I got the call. My wife arrived home around 6 pm.
My fears were apparent—my last two transplants were very difficult to say the least. The staff took my blood work for tissue typing. While we waited for the results of the blood test, I tried to warn my wife what to expect after the operation. We were told that the results of the test won’t be back for hours. My wife fell asleep, and finally at 11 p.m., I tapped my beautiful sleeping wife and told her that the transplant is a go! We waited until 1 a.m., the following morning, for the staff to come get me. My wife walked as far as the staff would allow her, and she gave me a kiss on the head and a warm smile then she sent me off. I am sure people could hear my heart beating from fear. I moved from the rolling bed to the operating table. The staff was amazing. When I am nervous, I tend to use sign language. So, there were times when I signed to the staff. This one nurse was very chatty with me and said that her daughter is deaf. As it turned out, her daughter was one of my wife’s students.
My wife told me later that at around 4 a.m., a nurse turned on the lights in my room waking her up and said a few things. We guessed that the nurse didn’t know that my wife is deaf. As to this day, we have no idea what she said. This amazing surgeon arrived shortly after and with a smile, he handed Mandy a note that read:
- Joe is doing very well
- The kidney went in with no issues.
- Joe didn’t require any blood transfusions.
- Joe will return within 1.5 to 3 hours from the recovery room.
This transplant was so much easier than my last two. I was up and standing shortly after arriving from the recovery room. My wife was very sneaky and was in touch with my younger brother. She gave him updates to share with the rest of our family. My younger brother, Chuck, arranged to fly down that night. Around 7 p.m., there was a knock at my door. This very young Doogie Howser looking doctor walked in. I struggled to figure out why this doctor looked so familiar for several seconds. I gasped and realized that it was my loving brother, Chuck! I was left speechless, and for those who know me, that is quite the rarity.
Ten years later, I am happy, healthy and working. My journey with renal failure has taught me very important lessons. This treatment is a marathon, not a sprint. A person with issues like mine needs to be active in his or her health. We need to champion our own needs. Life is what we make of it. I am blessed to have a loving family and an amazing wife! At DaVita, we believe that everything we do is for the betterment of our patients. If you love what you do, you will never work a day in your life. Without those caring souls who gave me life, I can never be more thankful. I know it time I will be required to have a 4th transplant. I have no fear, just hope. The famous bumper sticker pretty much says it all: “Don’t take your organs to heaven. Heaven knows we need them here!”