Aaron Barnes really doesn’t want this kidney.
But he does need it.
“I just didn’t want it this way,” Barnes said. “I didn’t want it from her because what scares me the most is both parents going under the table, and if the kids lose both of us, boy, that brings tears to my eyes right now, and that’s why I didn’t want it to be her.
“If something happens to me, fine, they have another parent, but something happens to both of us … wow … and that’s why I wanted the kidney to come from someone else.”
Barnes, a 50-year-old Wesley Chapel resident, has been dealing with chronic kidney failure (CKF) for decades. Only in 2022 did it deteriorate his health so rapidly that while he was planning to get a kidney transplant, the need for the procedure was expedited.
He is on the national transplant list, but it’s a waiting game to be awarded a kidney or for someone to donate a kidney directly to him.
That is, until he found the perfect donor.
His wife of 20 years, Andrea.
In sickness and in health
Andrea is scared.
“Oh yeah, very scared., I’ve never had major surgery — well, c-sections — but never had an organ taken out,” the mother of three said. “We’re constantly trying to figure something out, but we’ll get through it. We’ve done it together and we’ll continue to do it together, quite literally.”
Sometime in February, Andrea will give her husband one of her kidneys. It will extend and better his life, one filled with dialysis sessions three times a week and a year of health deterioration that has taken its toll on the family of five.
The couple will travel to the Mayo Clinic in Jacksonville and be there more than a month. Each will have a procedure, with Andrea undergoing a nephrectomy, or removing of the kidney. Aaron, on the other side, will receive the kidney, which will be placed in his lower abdomen, near his hip and the renal artery.
Aaron’s doctor also decided to remove his left kidney, as it was found to have a hematoma and is not functioning properly enough, even with dialysis.
It’s a process that has taken well over a year to get to, and it all started with a sharp decline in Aaron’s health in late 2021.
“I’m just 1 out of 39 million with CKD (chronic kidney disease),” Aaron said. “As a guy, they don’t tell you everything you go through, with kidney failure or a transplant. It just happens and you start going through all this and it takes everything from you: job, energy, your drive — it’s bad, but I always try to look at the positives and that it could be worse.”
It hasn’t been easy on Aaron and his family.
For years, Aaron had been dealing with CKD through kidney-sensitive diets and other healthy ways of living. However, once his glomerular filtration rate (or GFR, the way to test how well kidneys are working) fell below 20, that’s when dialysis began and it required an immediate life change.
Each session zaps Aaron of any energy and he’s done for the day less than a half hour afterwards. He couldn’t work. He couldn’t help around the house. He couldn’t do things with his kids.
That’s when the depression set in.
Lowest of lows
It hit Aaron hard.
Yes, dialysis took its toll on him, but not as much as the depression. And while going through this health crisis and major change in life would bring anyone down, the dialysis did cause a lot of it.
He would be in a fog, which can occur to patients who receive dialysis and then feel depressed.
“When this happened to me, I finally experienced depression for the first time and it was way worse than the health crisis I am experiencing,” Aaron said. “(The depression) scared me more than anything else.
“When you’re that depressed, when you’re emotionless, you get to that point where you’re that down, you’re that depressed and no one can help you, not even your family — that scared the hell out of me, man.”
“I didn’t consider myself to be suicidal, but the lack of caring, the lack of desire to eat or get out of it, I might as well have been.”
For most of 2022, it was just dialysis and depression. Eventually, it was time to tell the kids: A.T., 15; A’saph, 13; and Azalea Barnes, 9.
“We kept them in the dark a little bit, but then it got really bad, and I had to have that hard conversation with them,” Aaron said. “I am OK with my fate, but then what it does to the whole household can be miserable. It impacts the whole family, and that’s what bothers me the most.”
“It did bring us closer together, a little,” Andrea added. “He was in a lot of pain, so the boys would come in and rub his head or we would all sleep together in the same bed when he first started dialysis at home.
“And it’s a lot, and they’re also trying to live regular lives, as teenagers, and they come home to our house and chaos!”
The chaos would get more chaotic. When Aaron’s GFR got too low (3), he was admitted to AdventHealth Wesley Chapel, staying there over a month.
His weight loss was dramatic, dropping to 139 pounds. Doctors opted to place a hemodialysis port in his chest to aid with his dialysis sessions. He had a low platelet count for four days after surgery, leaving him at extreme risk.
“It took me a long time to get out of depression,” Aaron said. “And getting critically ill, it helped in that, on this journey, it’s a fight. You have to fight, so I did.”
“And it’s a fight,” Andrea added, “that never ends.”
As Aaron, Andrea and their children move forward, it will, again, be another life-altering change for the family.
As long as the surgeries are successful, both Aaron and Andrea will recover, but in very different ways. Andrea will need up to a week to recover, however, it will take some time to get back to her job as co-owner of Tru U Fitness Studio in Lutz.
“And I have to be his caregiver,” said Andrea, who went through the six-month process to get approved as a match to donate to Aaron. “Then we need someone to stay with the kids for about a month — it’s a lot.”
Aaron’s recovery will be more extensive, including starting an intense daily regimen of anti-rejection medication.
“Transplant is not a real solution — it’s a work-around,” Andrea said. “So it’s partly a solution, then it’s still work, it still changes everything and you adapt.”
The alternative is staying on dialysis, which isn’t a solution either. Dialysis raises a patient’s blood pressure to extreme levels. In fact, Aaron’s high blood pressure was delaying the surgery, as it needed to come down. So, Andrea would shoulder the burden of two parents.
Andrea wouldn’t necessarily tell Aaron everything happening with their teenagers, to keep Aaron from stressing out.
Soon, Aaron and Andrea will be closer than ever. Because an actual piece of his wife will help him live.
“No, not anymore am I scared,” Aaron said of the impending procedure. “After being in critical condition four times and almost dying four times, I’m not scared anymore.
“At this point, I can’t be scared anymore because this is what I need not to die.”
Becoming a Living Kidney Donor
While a kidney donation can come from someone who is on the organ donor list — someone who passes and has been allowed to be harvested to aid others — there is the option to become a living kidney donor. However, this is a lengthy process that involves several aspects.
For starters, it takes about six months from start to finish, with numerous tests to determine if one is healthy enough to donate — meaning a donor must be free of uncontrolled high blood pressure, diabetes, cancer, HIV, hepatitis or acute infections. Then there will be psychiatric tests to determine mental stability, plus one has to be a nonsmoker and can’t be pregnant.
As living donors, they can make a directed donation to a specific person — family member, friend, acquaintance, etc. — or a non-directed donation to an anonymous patient on the waiting list.
Every 10 minutes, another person is added to the national transplant waiting list — and 82% of patients waiting are in need of a kidney. On average, a living donor kidney can function anywhere between 12 years to 20 years, and a deceased donor kidney can improve quality of life for 8 years to 12 years.
Additionally, the average wait time for an organ from the deceased donor list is 3 years to 5 years, while getting a living donation, a patient may be able to receive a transplant in a year or less.
For more information about becoming a living kidney donor, visit Kidney.org/transplantation.
Published January 11, 2023