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Julia Browning Devine, 44, is living proof that one’s body, mind and spirit can endure far more than many of us can even imagine.
She’s lived with kidney disease since the age of 15. At 33, she received a kidney transplant. Six years later, doctors discovered she had a brain tumor and it had to be removed. The toll of brain surgery, along with complications of chronic rejection, and ongoing infections, caused her transplanted kidney to fail. Today, she has no kidneys and has to undergo dialysis treatment three days a week for more than three hours each day.
But, you won’t hear her complaining.
Yes, she desperately wants to get a new kidney, but she’s grateful that she’s able to receive treatment and live a somewhat normal life.
“When you are given these circumstances, you can either lay down and cry about it or you can deal with it and live life,” Devine said.
Kidney disease diagnosis
Extremely high blood pressure is what led doctors to discover that Devine had kidney disease when she was 15. Being so young and having no real health problems, it seemed very unusual for her blood pressure to be so high.
Devine’s family doctor ordered some labs and urine tests, which showed some abnormalities. Her doctor referred her to a urologist and it was later discovered that her kidneys had multiple cysts. She was diagnosed with Polycystic Kidney Disease, which affects an estimated one in 500 people, according to the PKD Foundation.
A normal kidney is the size of a human fist and weighs about a third of a pound. However, with the presence of PKD, cysts develop in both kidneys. When many cysts develop, the kidneys can increase in both size and weight, sometimes weighing many pounds each. There might be just a few cysts or many, and the cysts may range in size from a pinhead to the size of a grapefruit. The cysts can sometimes grow to the point of rupturing, which can be very painful and cause infection.
“I was terrified,” Devine said. “When they told me I had PKD and that it would ultimately end in kidney failure… I couldn’t wrap my head around that.”
Doctors told Devine and her family that she would eventually have to get a kidney transplant and possibility undergo dialysis treatments.
“I used to see all those patients and they just looked like they were so sick and I thought ‘Oh my God, that is going to be me,’” Devine said. “It was overwhelming. I remember thinking, ‘I’m not going to let this ruin my senior year.’”
And, she didn’t. She continued to be active, playing softball, and enjoying her last year of high school. But, doctors told Devine and her family that she would most likely need a kidney transplant within the next five to seven years. She was also referred to a neurologist to address some “blackout spells” that she was having, which were later diagnosed as petit mal seizures. During her first year of college at St. Catharine College, she actually suffered a seizure while driving. She was near McDonald’s in Lebanon when it happened.
“I fell back in the seat. My car drove through the light and hit another car head on,” Devine said. “Thank goodness I wasn’t going very fast and no one got hurt.”
Getting a new kidney
Devine was able to prolong the need for a kidney transplant for 18 years. But, during that time, she suffered from periodic kidney infections, which were very painful. As her renal function declined, her symptoms worsened. She began to lose weight and was extremely fatigued and anemic.
“My first year in college, I lost 20 pounds,” Devine said.
Her kidney function had to decline to 15 percent before she could begin the transplant process. In May of 2003, her nephrologist said it was time to get her on the transplant list. Just six months later, she received a call that a kidney was available.
“My sister and me were in Lexington getting ready to go shopping and I got the call,” Devine said. “They said they needed me to come to Jewish Hospital immediately. We did a U-turn on Nicholasville Road.”
As soon as she arrived at the hospital, doctors immediately took her in for tests, blood work, etc. By the time she got to her hospital room her family had already been given the news that she was a match for the kidney. While she was relieved, she was also scared because this was a major surgery. Devine said she can remember thinking, “Is this kidney going to do what it’s supposed to do?”
The procedure took four to five hours to complete, and the next day was rough.
“It was the worst pain I’ve ever felt,” Devine said. “I felt like I had been run over by a train.”
Devine was in the intensive care unit for two to three days and each day her condition improved. Within days, her friends and family were complimenting her on how much better she looked. Before the surgery, Devine weighed 112 pounds, which is extremely thin for her 5’7” frame.
“I looked horrible,” she said.
After her kidney transplant, her friends couldn’t believe how fast the color came back in her face.
“Well, give me a mirror. I want to see,” Devine said to her friends.
After recovering from the surgery, Devine went home to begin life with her new kidney. For the first six months, she had to wear a facemask everywhere she went and avoid large crowds. She was required to take multiple medications to keep her body from rejecting the new kidney, and she had to get labs done weekly to monitor her medication levels and creatnine levels. Everything seemed to be going well until 2008 when a biopsy showed her new kidney was in acute rejection. Tests also showed that her kidney had mild hydronephrosis, which is swelling that interferes with urine being able to drain from the kidney to the bladder. Doctors monitored her closely, and Devine’s entire focus was on caring for her kidney.
In 2009, she was faced with another health concern. Devine began suffering from ongoing severe headaches in her left temple, which caused her to get dizzy and feel nauseous. She began having more seizures and went to her family doctor who ordered an MRI.
“I will never forget Dr. Salem calling me at home that night and asking me if I was sitting down,” Devine said. “He told me that the MRI showed that I had a brain tumor in the left temperal area and it would need to be removed. The tumor appeared to be pressing on the left side of my brain.”
Dr. Salem scheduled an appointment with a surgical neurologist who confirmed that it was a tumor that had probably been there her entire life and it had grown to the point that it was pressing on the left side of her brain. It needed to removed as soon as possible, so Devine went in for surgery on July 2, 2009. Fortunately, tests showed that the tumor was benign.
“The surgery was very invasive, and required several days in the hospital and a few days at Frazier Rehab for speech and physical therapy,” Devine said. “But recovery went well. My biggest concern was the impact this major surgery would have on my transplanted kidney.”
In early 2010, she began having complications with her kidney. Acute rejection had become chronic rejection, and she spent much of her time at the hospital.
“It seemed like the hospital had become my second home,” Devine said. “I was lucky to go a week without symptoms reoccurring from infections.”
In December of 2010, Devine’s nephrologist gave her the bad news that her kidney would probably not last another year, and he wanted to start preparing her for a second transplant and possibly dialysis. During the next several months, Devine’s condition worsened, and in May of 2011, her kidney failed.
On May 13, 2011, she spent the night with her brother, David, because she was afraid to be alone. She felt awful. The next morning, she woke up very disoriented, her breathing was very shallow and she was suffering from severe leg cramps.
“My breathing was like panting,” Devine said. “I scared the hell out of my brother.”
Her parents took her to Spring View Hospital’s Emergency Room, and doctors could tell immediately that her kidney had failed. Her lungs had already filled with fluid. They sent her, by ambulance, to Jewish Hospital in Louisville to begin emergency dialysis. She had to do a four-hour dialysis treatment, and during the treatment, she developed disequilibrium syndrome (known as DDS), which is likely to occur in first-time dialysis patients who also have a medical history of seizures.
“They had never had a patient do that before,” Devine said.
They had to sedate her in order to complete the dialysis treatment.
The next day, the doctors and medical staff had a staff meeting to review the syndrome Devine had suffered from during her treatment because many of them had never dealt with it before.
“There’s another chapter in my book,” Devine said, laughing.
She was in the hospital for more than a week, and while she was there they removed her transplanted kidney but left her native kidneys intact, for the time being.
She left the hospital on May 23, 2011, and has been undergoing dialysis treatments ever since.
“In the beginning, it was an adjustment,” Devine said. “It was scary. I wanted someone to go with me the first two or three treatments. But, now it’s second nature. I just look at it like a job. Only, I don’t get paid.”
Another big adjustment for Devine has been restricting her fluid intake. She must stay within 32 ounces a day.
“I was used to drinking two cups of coffee in the morning, but those days are gone,” she said. “You kind of have to pick and choose when you drink. I eat so much ice it’s crazy. I think I’m going to break my jaw by eating so much ice.”
Out with the old, waiting for the new
Devine would have one last surgery in February of 2012 when doctors removed her native kidneys because they were a major source of infection and were basically useless. Feb. 7, 2012, the day of the surgery, was the last day she passed urine. Since then, she’s been infection free, and while she wishes she had at least one fully functioning kidney, there are some positives for this self-professed “germaphobe.”
“It’s nice not having to go into disgusting public bathrooms,” Devine said, laughing. “You have to make a positive out of a negative.”
Since her last surgery, Devine has been infection free for two years. Along with having dialysis treatments three times a week, she is very mindful of her fluid intake and follows a special renal diet, which not only means limiting fluids, but also eating a high-protein diet, restricting salt, potassium, phosphorous and other electrolytes.
“Dialysis is not a cure. It is a treatment and I am so very grateful for it,” Devine said. “I’m even more grateful that I’m a good candidate for a transplant. So many people don’t have the option due to other health issues. But, I’m anxiously awaiting my second gift.”
Devine is currently listed on the transplant list. Her blood type is O negative, which means people with O blood type are possible matches for her, but she faces an additional hurdle now because her body has built up antibodies since her last kidney transplant.
“It’s going to be harder to find a match this time,” Devine said.
But, she hasn’t given up hope. She’s had a few people contact her via social media, but nothing has panned out quite yet.
“If you have an O blood type, and are serious about it, you can contact me,” Devine said. “I would love nothing more than to find a living donor. They say the longevity of a kidney from a living donor is much better.”
Receiving a new kidney would mean she could get back to living a more normal life. She desperately wants to work full-time again.
“Being on disability for five years it just limits you,” Devine said. “It’s such a small income and I have to live on that. It’s so hard. My family has helped me out tremendously.”
Devine said she also wants to go on a vacation again, especially to a beach.
Devine’s dreams of having children will probably never happen, but that’s something she has come to terms with, considering her health problems.
“There is a chance my child could inherit Polycystic Kidney Disease, and I didn’t want my child to go through what I have went through,” she said. “Thank God I have nieces and nephews. I can spoil them rotten and not have to send them to college.”
Devine’s two older brothers and two older sisters have blessed her with 10 nieces and nephews. Her family, including her parents John Dennie and Christine Browning of Lebanon, her friends, and her boyfriend John have been an amazing support system. Her brother, David, said his little sister is the amazing one.
“If you didn’t know Julie, you would think that no one could survive what she’s been through,” he said. “I believe she’s been a patient in just about every hospital in Louisville. She’s seen the inside of just about every room at Spring View Hospital. I often joke that she is just an ongoing science experiment for the doctors and specialists… But, she’s never lost that fighting spirit.”
And she’s never lost her sense of humor. Recently, on Facebook, Devine wrote that when she receives a new kidney she plans on naming it “Francis after the most awesome Pope!”
Devine also has some advice for those of us who still have our kidneys.
“Take care of those kidneys,” she said. “You’d be surprised what those little suckers do.”
Are you a possible match?
Do you have an O blood type? If so, you are a possible match to donate a kidney to Devine. If you are interested in finding out more, contact Lynn Polly, Transplant Living Donor Coordinator, at 859-323-5737.
When a living donor donates a kidney…
• His or her remaining kidney grows in size to compensate for the absence of the donated kidney.
• Pregnancy is possible after living donation, but is not recommended for at least six months after surgery for recovery.
• Living donation surgery is not as invasive as it used to be. It is now done laparoscopically.
• Living donation does not affect life expectancy or increase risk of kidney failure.
• People can live normal lives with one kidney.
• The recipient’s insurance pays for all testing and surgery for the donor, in most cases.
Organ donation facts
• 121,525 people are waiting for an organ
• 18 people will die each day waiting for an organ
• One organ donor can save up to eight lives
• Anyone, regardless of age or medical history, can sign up to be a donor.
• Most major religions in the United States support organ donation and consider donation as the final act of love and generosity toward others.
• There is no cost to donors or their families for organ or tissue donation.
• Only designated procurement personnel will have access to the donor registry, and access to the registry would only occur at such times that would confirm an individual’s wishes regarding donation, i.e. upon the death of the individual.
• All information submitted to the Kentucky Organ Donor Registry will be kept confidential and secure at all times.
• The Kentucky Association of Circuit Court Clerks created the Trust For Life to educate Kentuckians about the life-saving mission of organ donation. You can sign up for the Kentucky Organ Donor Registry when you get your driver’s license.
• You can also make a donation to The Trust For Life is a 501c(3) non-profit organization. The Trust For Life is 100 percent funded by community and personal donations. It does not receive any federal or state funding. Donations are tax-deductible.
• For detailed information about organ and tissue donation and transplantation, please click on www.kyorgandonor.org or www.trustforlife.org.