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Living with chronic illness: Retired reservist seeks life-saving organ donor

Retired Master Sgt. Derrell White, currently a government civilian for the Defense Contracting Management Agency, sits in his wife's office at the 920th Rescue Wing, Patrick Air Force Base, Fla., Oct. 3, 2015. White, who retired from the Air Force Reserve in 2013, was diagnosed with the chronic kidney condition IgA Nephropathy in 1986. He is now in stage four, meaning his kidneys are operating at below 20 percent of normal, and is seeking a kidney donor to help save his life. (U.S. Air Force photo by 2nd Lt. Anna-Marie Wyant)

Retired Master Sgt. Derrell White, currently a government civilian for the Defense Contracting Management Agency, sits in his wife's office at the 920th Rescue Wing, Patrick Air Force Base, Fla., Oct. 3, 2015. White, who retired from the Air Force Reserve in 2013, was diagnosed with the chronic kidney condition IgA Nephropathy in 1986. He is now in stage four, meaning his kidneys are operating at below 20 percent of normal, and is seeking a kidney donor to help save his life. (U.S. Air Force photo by 2nd Lt. Anna-Marie Wyant)

Retired Master Sgt. Derrell White visits his wife, Master Sgt. Heidi White, in her office at the 920th Rescue Wing, Patrick Air Force Base, Fla., Oct. 3, 2015. Derrell, who retired from the Air Force Reserve in 2013, was diagnosed with the chronic kidney condition IgA Nephropathy in 1986. He is now in stage four, meaning his kidneys are operating at below 20 percent of normal, and is seeking a kidney donor to help save his life. Heidi is the unit training manager for the 920th Maintenance Group at Patrick. (U.S. Air Force photo by 2nd Lt. Anna-Marie Wyant)

Retired Master Sgt. Derrell White visits his wife, Master Sgt. Heidi White, in her office at the 920th Rescue Wing, Patrick Air Force Base, Fla., Oct. 3, 2015. Derrell, who retired from the Air Force Reserve in 2013, was diagnosed with the chronic kidney condition IgA Nephropathy in 1986. He is now in stage four, meaning his kidneys are operating at below 20 percent of normal, and is seeking a kidney donor to help save his life. Heidi is the unit training manager for the 920th Maintenance Group at Patrick. (U.S. Air Force photo by 2nd Lt. Anna-Marie Wyant)

PATRICK AIR FORCE BASE, Fla. -- In fall 2014, recently retired Master Sgt. Derrell White faced a harsh reality: his kidneys were slowly failing, and his survival depended on a kidney transplant. Although he heard those words nearly 30 years earlier, finding out his kidneys were operating at only 18 percent, combined with the fact that he recently became anemic and was regularly fighting fatigue, made this all the more real.

While he'd known since 1986 that he had IgA Nephropathy, a chronic kidney condition, he hadn't felt the effects for nearly three decades. Aside from a strict diet and regular doctor visits, he was living a normal life with his wife, Master Sgt. Heidi White, and their daughter. He was taking all the necessary precautions to properly manage his overall health and physical fitness, but it was no longer enough.

"My best option by far is a living donor," Derrell said.

His life isn't really in his own hands anymore; he has to depend on someone else for survival.

Perfect match -- or not

The first person to step up to volunteer as a kidney donor was his wife. Heidi was a match, which they thought would solve their problems. Upon further tests, doctors determined she had bilateral kidney stones, meaning one or more stones in both kidneys, which eliminated her from being a donor. They were devastated.

"It's so frustrating that tiny little bilateral kidney stones that I can't even feel mean that I'm not good enough to donate," Heidi said through tears. "You get your hopes up, then they're dashed."

The process of finding a donor has been an emotional rollercoaster for their family. Derrell said his three sisters volunteered to donate, but all were ruled out either for medical reasons or in the screening process. His brother-in-law volunteered, but their blood types don't match. A close friend also volunteered, but he, too, was ruled out for medical reasons.

Disappointed yet hopeful, Derrell signed up for the national kidney donation registry in June. It could be years -- or too late -- by the time he would be contacted for a transplant. At least that was what he thought.

High hopes

One night in July, Derrell received a call from Jackson Memorial Hospital in Miami. The hospital had a kidney from a cadaver, and they would be able to perform the transplant on Derrell at 5:30 a.m. if he could get to the hospital in time. He and Heidi immediately rushed to the hospital and arrived at 1 a.m.

"It was surreal," Heidi said. "The drive down was tense. The waiting at the hospital was nerve wracking."

Derrell said he was nervous and excited as he prepared for the transplant. Suddenly, there was a change of plans.

"They were rolling me down the hall for surgery, then they said 'time out,'" Derrell recalled. "The kidney was flown from Texas, but the problem was when it got to Florida, it had been out of the body too long."

The doctor ran some tests to ensure the kidney was functioning properly, but he was uncomfortable with the test results. Again, Derrell and Heidi had gotten their hopes up only to have them abruptly dashed. He said they drove back home feeling helpless.

The search continues

Derrell and Heidi also sought alternate options for a donor. They looked into the paired kidney exchange program, where transplant centers help incompatible pairs of recipients and donors and involves two living donors and two recipients.

According to the National Kidney Foundation, if a donor from one pair is compatible with the recipient from the other pair and vice versa, the transplant center can arrange a "swap" for simultaneous transplants. This allows the two transplant candidates to receive kidneys and two donors to give kidneys even if the original recipient/donor pairs were unable to do so with one another.

In addition, the Whites learned about the Never Ending Altruistic Donor chain program, in which a potential donor is matched with a recipient who has a willing but incompatible donor. The recipient's incompatible donor then gives to another incompatible pair, and so the chain goes on.

These are options, but finding a willing and qualified donor has proven to be the biggest challenge. Heidi said prior to Derrell needing a transplant she knew almost nothing about becoming a kidney donor. She researched the topic heavily and does her best to spread the word.

"One of the things that I learned is that after you donate your kidney, the remaining kidney will start to grow and increase in function to compensate for the loss of the other one," she said.  "Another very critical thing I learned is that if for some reason your remaining kidney starts to fail sometime down the line, as a donor you are given priority on the waiting list for transplant."

Derrell and Heidi strongly encourage those interested in donating or learning more about the donation process to visit Florida Hospital's Kidney Transplant page or the National Kidney Foundation's donor page.

An alternative

If Derrell is unable to find a donor as his kidney function continues to decrease, he said the near-term alternative is dialysis, an invasive treatment usually done in a hospital or medical center.

According to the National Kidney Foundation, dialysis keeps the body in balance by doing the kidney's regular functions, including removing waste, excess salt and water from body; keeping safe levels of potassium, sodium and bicarbonate in the blood; and helping to control blood pressure. Dialysis is usually needed when kidneys reach 85 to 90 percent failure. Derrell's kidneys are only 3 percent above this level.

While it would help keep Derrell alive, dialysis is not a long-term alternative to a functioning kidney.

"Average life expectancy on dialysis is 5-10 years," according to the National Kidney Foundation.

Depending on each other

Despite the ups and downs and uncertainties ahead, Derrell and Heidi say they have always been there for one another in good times and bad and will remain positive.

"Heidi goes with me to all my appointments, picks up my prescriptions, and is always inquiring about my wellbeing, ensuring that I have everything I need to be comfortable," Derrell said. "She has been very proactive about getting the word out about my condition and spearheading the campaign to find a living donor."

Heidi said Derrell is equally supportive of her, especially her involvement as a reservist with the 920th Rescue Wing here.

"He's always completely understanding," Heidi said. "The sacrifices that he makes allow me to focus on the unit and do the things that I need to do."

She said it's difficult for her to see her husband suffering and feels helpless that she is unable to make it better. She now stays focused on trying to help find a donor.

The 920th Rescue Wing's motto is "These things we do, that others may live." Heidi and Derrell hope there is someone out there who is a successful match so he can continue his life.

Still searching

At this time, Derrell is still seeking potential donors. This summer he switched from Jackson Memorial to Florida Hospital in Orlando to have a closer location to home. In addition to the national kidney transplant registry, each hospital has its own criteria for patients and donors. In October, Derrell was able to transfer his name and time in waiting from Jackson Memorial to Florida Hospital.

Heidi and Derrell said they want to spread awareness about Derrell and others like him in need of life-saving donors. While there are strict criteria to be a donor, Derrell said he knows there are a lot of people out there who would be eligible to save his or other lives.

"If anybody were interested, don't automatically think you don't qualify," Derrell said. "It's important to go ahead make the phone call. They do an interview, get your history and let them decide whether you're a good candidate or not."

Heidi said she is inspired by her husband's resilience and positive attitude throughout this difficult time.

"Derrell has this huge force of will," Heidi said. "The pain might be there, but he fights it every step of the way."

This is the second of a two-part series about living with chronic illness. Read more in the first article, Living with chronic illness: Retired reservist seeks life-saving organ donor.