While normal kidneys are the size of a person's fist, Joel Novak's kidneys are the size of a football - and they're still growing.
The reason is because Novak, an Iraq veteran from Alexandria, has polycystic kidneys. This is a genetic disorder that causes cysts to grow on the inside and outside of his kidneys, enlarging them and forcing them to push on other vital organs.
While Novak knew his kidneys would one day be affected by this disorder, it wasn't supposed to be so soon. In fact, his kidneys shouldn't have even started declining until age 60. But the 57-year-old's kidneys are currently functioning at less than 17 percent. He says the prescription of certain medications while in the military damaged his kidneys early on, setting the decline in motion.
Though a donor has been lined up, Novak and his wife, Susan, are still facing many unknowns, such as where they will stay while Novak is recuperating from the transplant.
The military years
Over the course of his 30-year military career, Novak was placed on sick leave twice for high blood pressure. The first time, he was put on a medication, but after a week his blood pressure hadn't gone down. So the doctor doubled the dosage.
Later, while in Iraq, a doctor he saw wanted to double the dosage yet again. But another doctor stepped in, asking whether Novak had kidney problems.
"The doctor said that this medication is exactly the wrong type of medication for someone with polycystic kidneys to be on," Novak said. "It causes fluid and salt to built up around kidneys. He said, 'If they double it, even if your kidneys are working 100 percent, you'll be dead in a week.'"
The workup revealed that Novak's kidneys were only functioning at 60 percent. He was advised to return to the United States. However, he felt he was needed in Iraq for another month, so he stayed and did his best to manage his kidney function.
After a month, he was flown back to Colorado. He called Susan, who was unaware of his condition, to pick him up from the airport.
"He was unrecognizable," she said. "He was extremely bloated with gray skin. I knew he was deathly ill from looking at him. He needed a kidney then, and that was 2005."
Novak retired from the military in 2008 and eventually returned to his hometown of Alexandria. His kidney problems continued to escalate. He eventually began to see a decline in his energy levels.
"Now I look back and can see the steady trail of deterioration," he said. "A little over a year ago, the bottom fell out."
Novak was added to the transplant list 11 months ago. Between March and June of 2017, his kidney function dipped below 17 percent, making him eligible for dialysis. However, Novak chose not to have dialysis, because it would make a transplant less likely to be successful.
An action plan
Now, a transplant is necessary - and soon. Without one, Novak may only have six months to live. Because of the size of his kidneys, his other organs are starting to be affected. The kidneys are pushing his intestines into his heart and lungs, causing pain and problems breathing.
Typically with a kidney transplant, the old kidneys are left in and the new one is placed. But because of the size of Novak's kidneys, he will likely need both removed, making the procedure more complicated than normal.
Numerous people, including Susan, were tested and were not found to be a match for Novak. Then, in April, a family friend reached out wanting to be tested. He was not a match for Novak, either. However, he still wanted to help.
"He said, 'I am willing to donate to a complete stranger if someone in that family matches you (Joel Novak) and will donate to you,'" Susan recalled.
This set a transplant chain in motion. Novak is set to receive the kidney of a 54-year-old woman, though the actual procedure has yet to be scheduled. For a number of reasons, it will likely be short notice when Joel and Susan need to head to the University of Minnesota Medical Center for the surgery.
The unknown timing complicates things, because it makes planning housing nearly impossible. Also adding to the stress is that fact that the Novaks have no idea how long they need to have housing, as the recovery time differs for everyone. The University of Minnesota Medical Center - which is the location where Novak must have the surgery for insurance reasons - does not provide housing for those recovering from transplants.
"The U of M is probably the best transplant center in the world," Novak said. "Only four places in Minnesota do transplants, and only one has a place for patients to recover. If you look outside Minnesota, the majority have places to recover. While we're ahead in some ways, we're behind in others."
The Novaks can afford to spend about three weeks in a hotel in Minneapolis if necessary. But any longer would wreak havoc on their finances, Susan says. The hospital has told them they may have to stay in the area up to a year, which could cost about $36,000 for a hotel or rental.
The Novaks are in the planning stages of a fundraiser. If they raise more money than they need, they have a plan to give back.
"Say we raise the $36,000 to stay for a year, and we only have to stay for two weeks," Novak said. "Then we use the $36,000 to buy a residence in the area for the next poor guy that comes along (and faces this issue)."
In the meantime, Susan says the stress of the unknown is affecting their everyday life. Rather than focusing solely on Novak's health, she's had the other added stressors and says other families shouldn't have to deal with the same.
"We've both just kind of diminished," Susan said. "We just go through the motions of getting through each day, doing the paperwork, paying the bills, making the phone calls. You find your world just shrinking. Other people shouldn't have to do this. They should be able to focus on getting healthy again."
Novak agrees, stating help for housing and recovery just shouldn't be this hard to come by.
"This shouldn't happen to any military retirees, it shouldn't happen to any veteran who honorably served and it really shouldn't happen to anyone who just needs help," he said.