My Tolerance Story: Edward Jones
I was originally diagnosed with kidney disease in around 1995, but I felt nothing from it. The only way I knew was from the blood work—I never felt sick. I even got on the fire department in 1999 with no issues.
Then, around 2006, my blood work showed that my kidney function was starting to go down. It got to the point where the doctors told me my kidney function was at around 20%. I was still doing everything I did on a regular basis. I did my job as a firefighter, I would go out running every few days—I never felt anything, never felt sick.
I went on the transplant list in 2008 or 2009. After one of my lab days, they called me back and said that my potassium levels were so high that it could trigger a heart event at any time. They wanted to put me on dialysis.

They put a temporary port in my neck, and I started dialysis. I was on dialysis for six months before the transplant. I was a miserable dialysis patient. I was such an active person, and I just wasn’t used to having to sit down for three hours and do absolutely nothing. I couldn’t work as a firefighter because they couldn’t risk anything happening to the port. I did go back to work but they gave me a new job installing radios in stations.
I started asking people to become a donor. I asked nearly 30 people to be my donor. My son was in college, and I did not want to interrupt his life because he was doing so well. One of my brothers went to do his lab work and they ended up keeping him because he had had some sort of heart attack. My other brother was also sick and was not eligible to donate. My wife and my mother were the ones who asked my son. He was on board from the start—no hesitation at all.
Dr. Leventhal called me to tell me about the tolerance study. I was on board from the start because he said they could possibly wean me off medications within a year. That was good for me because I am terrible at keeping a medication schedule. There have been many times over the years when they say, “finish this medication” and a month later I have a bottle with five tablets in it. I know how I am. Once I start feeling better, I say, “Oh I don’t need this anymore.” This tolerance study was for me.
I was still on dialysis during this time. I was never a good dialysis patient. I complained about everything they did, I watched everything they did, I even caught some mistakes I thought they made. They were just as happy to get rid of me as a patient as I was to stop dialysis. I did go back to see them after the fact, and they were all happy to see me.
I was never a good dialysis patient. I complained about everything they did, I watched everything they did, I even caught some mistakes I thought they made. They were just as happy to get rid of me as a patient as I was to stop dialysis.
Edward Jones
I never even told them I was going to have a transplant. They wanted to have my arm prepped for dialysis. I said, “You’re not going to chop up my arm.” They had the person who ran the whole facility come talk to me and he said, “I am going to set up an appointment to have your arm done and you are going to go.” I went to the appointment. They had the table set up with all the instruments and they asked if I was ready and I said, “Just clean this port and I’ll be on my way. That’s all I’m having done.” He came to see me and said, “What happened?” and I said, “I told you, I am not having that done.” He said, “Well you could get an infection,” and I said, “Well, you better be careful then.”
Before my surgery, I had a couple sessions of chemotherapy and radiation and my last dialysis session. The night before my surgery, we had a family day in Chicago. I live in Northwest Indiana, about 45 minutes from Northwestern Memorial Hospital. I have four kids. At the time, my son was in his early 20s, I had a teenager and then two young kids, maybe five and seven at the time. We had a ball. We stayed out pretty much all day, went home late at night, and my wife and I had to be at the hospital at 6 o’clock in the morning. I had my transplant in October 2010. Everything went really smoothly, and the kidney functioned great from the start. The day of the transplant, I remember them bringing my son in. We spoke for a few minutes and the next thing I knew it was all over.
The next day, I could hear my son walking in the hall telling jokes. I thought, wait a minute, I had surgery too and I don’t feel like that. I’m pushing the button for more morphine, and this guy’s in the hall telling jokes. They told me I had to get up and walk around and I said, “But I just had surgery!” They said it was the doctor’s orders. So I got up and walked around. I was in the hospital a total of eight days.

After the transplant, they wanted me to come back three times a week for maybe the first three weeks. The first week I was home, I felt really weak and I didn’t have an appetite at all—I didn’t even want to drink water. At my first checkup, they told me I was dehydrated and I had to drink water. So I would sip on one bottle of water all day.
At my second appointment, I was dehydrated again and almost passed out, so they gave me an IV. At the next appointment, I was dehydrated again. He gave me two liters of fluid and threatened me. He said, “If you come back dehydrated again, I am going to give you three liters.
On the way home, the 40-minute ride took maybe an hour and a half because I had to stop at every restaurant and rest stop so I could go to the bathroom. For the next appointment, I made sure I got my water down.
I had to deal with a lot for the stem cell part. I once heard Dr. Leventhal describe recovering from a kidney transplant as like getting hit by a car and going through stem cell treatment as like getting hit by a truck. That is no exaggeration. I developed a skin rash that lasted close to a month. Then I started getting bladder infections, and it was two months before those cleared up.
There were a lot of different medicines involved. At one point I was taking 20 pills a day. One was a fluorescent yellow liquid medication that had the most godawful taste of anything I have ever endured in my life. I stopped taking it. My nurse asked if I was taking it and I said, “Well…” She said I had to take it—if I didn’t, I could develop a lung infection.
I had to deal with a lot for the stem cell part. I once heard Dr. Leventhal describe recovering from a kidney transplant as like getting hit by a car and going through stem cell treatment as like getting hit by a truck. That is no exaggeration.
Edward Jones
Well, I developed a leak in my attic, and I went up there to see about it. It was pretty moldy up there and the next day I was coughing almost nonstop. I had to go to the hospital, and I ended up having a lung infection just like she said. I had mold in my lungs as well as some type of bacteria. I had to have a lung biopsy, which is an awful procedure, and they found out I had pneumonia. So I had to take another medication that made me unable to see the colors green and blue—they both looked gray. I was on that for a few weeks. After that cleared up, I was ready to go back to work again and then my left eye stopped moving. They couldn’t determine the cause of it, but it lasted for maybe a month.
That was in September 2011. In October, the last thing that happened was my platelet count dropped, and they couldn’t figure out why. By this time, they had started weaning me off a lot of the medication. I had to go through several tests, and they tried several medications that didn’t work, so they had to do a slow steroid drip that made me want to eat all the time. That was for three hours three days a week. It was just like being back on dialysis again. That was an awful feeling for me. I also had to do a bone marrow biopsy, which is extremely painful. They were trying to determine whether I had some type of cancer, but it was just one of those things. Eventually, my platelet count started to come back up. I went from 175 pounds to 205 in about a month.
They were able to wean me off my last medication in November 2011 and I went back to work the next month. In 13 months, I was weaned off all antirejection medication. Looking back, it was a rough road, but to me, it was really worth it.
Edward Jones
They were able to wean me off my last medication in November 2011 and I went back to work the next month. In 13 months, I was weaned off all antirejection medication. Looking back, it was a rough road, but to me, it was really worth it. Sometimes I forget that I went through that. It’s such a faded memory because there’s no more dialysis and I am not on any prescription medications. It’s easy to forget it actually happened.
My son is doing great, too. He donated on Thursday, was back to school on Monday, and hasn’t stopped since. Knowing how terrible I am at taking medications, I wouldn’t have wanted to waste my son’s kidney because I did not follow the protocol for medications. I think about the complications that could have resulted from missing a few days. The tolerance program has given me a lot more security.
About the Author

Edward Jones was born in Gary, Indiana, in 1967, the middle child of a blended family. He was the joker/life of the bunch, so he got in trouble often as a kid. He went to the Coast Guard fresh out of high school. After the USCG, he worked in various positions at one of the local hospitals in the Greater Northwest Indiana area until joining the Gary Fire Department in 1999, where he served as a fire Investigator and Senior Inspector. During his time in the fire service, he also went to college, earning his bachelor’s degree in business management. He retired in July 2022. He has spent his retirement traveling to some bucket list destinations like South Africa, the Dominican Republic, and Colombia to name a few. He spends a lot of his free time creating artwork with watercolors and pastels.