Fulton educator dreams of a kidney

Jason Rosenstengel, a Fulton resident, hopes to find a match to replace his failing kidney. One kidney was removed after cancer was found, he said.
Jason Rosenstengel, a Fulton resident, hopes to find a match to replace his failing kidney. One kidney was removed after cancer was found, he said.

Jason Rosenstengel, a para-educator at Fulton high school for special-needs students, didn't get to choose his lot in life. In fact, it was by mere chance he even discovered the illness that now governs his every move.

"I had high blood pressure," Rosenstengel said. "I was seeing my physician for it in 2015. He would take my blood every other visit."

Those routine check-ups saved his life, Rosenstengel said.

"It was the last day of February, and I went in to the appointment," he said. "They took my blood, and I went about my day. Later, that same day, I got a call from my doctor."

The concern in the doctor's voice, Rosenstengel said, instantly put him on edge.

"He said, 'We got the results of the blood test. We want you to go to University Hospital,'" he said. "It freaked me out a little."

The concern in his doctor's voice was not without merit. Rosenstengel said the blood test showed his kidneys were showing signs of failure.

"It really didn't hit me how serious it was till I got to the hospital," he said. "It just snuck up on me."

Rosenstengel said knowing what he knows now, there were instances that pointed to kidney trouble. Many times, however, people can ignore the obvious signs in front of them, or there are no signs at all, he said.

His kidney failure was just the beginning of his troubles, Rosenstengel said.

"On May 1, I had a doctor's visit with a specialist for testing," he said. "They found a spot of cancer on my (right) kidney. They said 'It's not aggressive, so let's just remove the kidney.'"

Removing the kidney fixed the cancer, but it left Rosenstengel with a conundrum.

"Because they removed my kidney, and the other was working at about 15 percent, I had to go on dialysis," he said. "I have been on dialysis since May of 2015."

Due to the scarring on his remaining kidney, Rosenstengel said, it's now functioning in the single digits, leaving him dependent on dialysis.

"I go to dialysis three days a week," he said. "Once I'm there, I am on the machine for about four hours."

Rosenstengel said he tries to stay positive, but the medical care he needs to live takes up a huge chunk of his life.

"I guess it's not that bad," he said. "I have TV, music, my phone and Netflix. But it's an intrusive entity. I'm away from my family isolated in that chair. The bad days are really bad. But there are good days, and they are pretty good."

Dialysis is not without its drawbacks and complications, Rosenstengel said.

"While cleaning the blood, they are also removing fluid," he said. "It causes cramping. Sometimes, it affects me the day after. I get this really low energy level."

Not only does he feel physical draw backs, Rosenstengel said, the dialysis also changes his entire week.

"Because of the time I spend in dialysis, I have to move my entire week into nights I'm not there," he said. "I also have a second job, and that pushes my little remaining time into the weekend."

Rosenstengel said he also has a highly restricted diet, which makes his days even more strenuous.

"I can't enjoy eating," he said. "If I cheat even a little, I have to spend the rest of the week worried about (correcting that). Before, I ate whatever. Now I'm on the renal diet, the worst diet."

His diet becomes especially troublesome when he is around his family, Rosenstengel said.

"The rest of the family doesn't have to limit themselves," he said. "That makes it hard. They feel guilty."

Even if his family does feel guilty, Rosenstengel said, they are his bedrock.

"They are an awesome support system," he said. "My entire family is. My friends and coworkers, too. They are people I can vent my frustrations to. I constantly have people saying they will pray for me. It's overwhelming."

Rosenstengel said chief among all his supporters is his wife, Mandy.

"She is amazing," he said. "She is always there for me; she puts up with my depression and frustration. She is going through this, too. Even then, she pulls me back when I am feeling too sorry for myself. She gets me back and grounds me."

Spending 22 months going to dialysis three times a week is, to put it lightly, financially taxing, Rosenstengel said.

"It's definitely a strain financially," he said. "Insurance covers a lot, but the medical bills they put a lot of pressure on you. It's overwhelming and causes some stress, especially seeing them pile up."

While it may seem like he is in dire straights, Rosenstengel said, a person can live in his situation.

"This is not a life or death situation," he said. "You can live a fairly normal life on dialyses."

Rosenstengel said he keeps his situation in perspective.

"I tell myself that there are people out there that have it a lot worse," he said. "This is a temporary inconvenience for me, but it could be a lot worse. I call the things I have to do the 'new normal.' Watching my food, going to dialysis I just have to get used to it."

On the list

All that being said, he does still need a new kidney, Rosenstengel said. Once, he thought he had a match, but then it turned out the donor had the same disease he has.

"My quality of life and health would vastly improve with a transplant," he said. "I'm on a list for a 'cadaver' donor, which is where they harvest organs from donors who pass away. But a living donor is better and healthier. It's the best option."

Right now, Rosenstengel said he is trying to get the word out about donating kidneys. Not just for him, but every one in his situation.

"I'm concentrating on educating," he said. "It's an uncomfortable situation when you need an organ. I have never said, 'I need a kidney, go get tested.' I just share my story."

Rosenstengel said letting people know what it takes to be a donor is half the battle.

"They don't always know they only need one kidney," he said. "They also don't know that my insurance will pay for the testing and procedure. The cost falls on me."

Getting the word out has been effective, but fruitless, Rosenstengel said.

"People have contacted me, saying that they will get tested," he said. "None have been a match."

To be a donor match, Rosenstengel said there are several requirements. "We have to have the same blood type," he said. "Mine is O negative, which is pretty rare. Next, (the doctors) do a lot of testing. They want to make sure the donor will live a healthy life with only one kidney."

Rosenstengel said people who don't match him should keep going, since there are others out there just like him who are waiting on a kidney. "At the end of the day, I am very lucky," he said. "Considering all the stuff that has happened, I try to keep from complaining too much."

Rosenstengel said his hope is someone will come along and be a match, but they have to take the first step.

"Look into (being a donor)," he said. "Not just for me, but for everyone out their waiting on someone to be their hero."

If you would like to learn about being a organ donor, contact Catherine Ashbaugh at the University Transplant office by calling 573-882-9974.