Breckenridge resident receives kidney from Florida firefighter
December 10, 2018
Heidi Hughes is on the road to recovery and she's feeling like a completely different person.
Hughes, a long-time Breckenridge resident, has spent the last decade combating serious kidney failure with less than 20 percent function in her one working kidney. But all of that changed last month when David Blair, a firefighter in Florida, decided to donate a kidney to Hughes, a complete stranger.
While complications arose following the somewhat untraditional procedure, the surgery was successful and both Hughes and Blair are on the mend.
"That there was a stranger that was willing to put his life on hold and donate part of his body to somebody he's never even met is just so amazing," said Hughes of Blair's donation. "It's just a wonderful feeling knowing that there's people like that out there in this world."
Hughes, a Florida native, was born with a rare genetic disease called cystinosis, a condition characterized by the accumulation of cystine crystals within cells. The buildup can have severe and far reaching effects on the body, causing problems in a variety of organs and tissues, though the kidneys are often the most vulnerable.
Hughes had her first kidney transplant at the National Institutes of Health in 2002, after her father, Garry Hughes, donated his own kidney for the procedure. While the surgery was successful, the new kidney only served as a temporary solution. In 2008, Hughes was again diagnosed with kidney failure and it took more than a year for her to be added back to the transplant list in Florida. But Hughes decided not to be defeated by her illness and moved to Colorado to embrace life.
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"I took it not as a life sentence or a diagnosis, but as a challenge," said Hughes. "I moved to Breckenridge in 2010 and basically lived the life we all live out there. I would snowboard, splitboard, hike and mountain bike. All those things we do. And I truly think that the whole eight-year period really helped me prolong my kidney's life. I was at 20 percent function or less for about nine years and that's kind of unheard of.
"But if you passed me on the street or on the slopes you'd have no idea. I was hiking 14ers, and doing what I could to stay healthy and positive. I really believe that Summit County and all the people and the environment allowed me to embrace life and the life that I had left."
But about a year ago, things took a turn. Hughes said that as she continued to get sicker and weaken, the life she moved to Breckenridge to live was no longer an option. It was time to pursue a second kidney transplant more aggressively.
Hughes reached out to Dr. Allan Kirk, the surgeon who completed her first transplant who now chairs the Duke University School of Medicine Department of Surgery. Kirk agreed to oversee the procedure, if Hughes could find a donor.
Earlier this year Hughes was placed on the living donor list, but her family wasn't content to sit around and wait. Her parents launched a social media campaign on Facebook to try and bring attention to Hughes' story, and her father, a 34-year firefighter, began spreading the word to his colleagues as well. It was there, amongst the close knit community of firefighters in Florida, that they found their man.
David Blair, a lieutenant and EMT with the Edgewater Fire Department, didn't know who Heidi Hughes was. But he did recognize her father, at least by name. The two knew each other somewhat through their work at the Daytona International Speedway, which brings in firefighters for races. Moved by the Hughes' story, Blair decided to give the ultimate gift.
"I have two daughters," said Blair. "I related to that, and to Garry not being able to donate because he already had. I thought about what I would do in that situation and I'd hope someone would help out. I'm also a man of faith, and it's always been preached to love one another and help people out. Those two things were prevalent in my mind."
From there Blair and Hughes began the process at Duke University Hospital, taking surveys and tests trying to find out if Blair was compatible. As it turned out, Blair and Hughes have completely different blood types, but the doctors at Duke were able to work their magic.
"We didn't have blood types that matched, but Duke is on the cutting edge medically with all these new treatments, and I decided to accept an ABO non-compatible match," said Hughes.
As a result of the difference in blood types, Hughes was forced to undergo a slew of other procedures to assure that her body wouldn't reject Blair's organ such as blood transfusions and numerous procedures called plasmapheresis, a process similar to dialysis which removed antibodies that would negatively react to Blair's kidney.
The two had the procedure on Nov. 15, performed by Dr. Aparna Rege and overseen by Kirk. The surgery was successful, though there were a number of complications. Just three days after the transplantation, during Hughes' fourth round of plasmapheresis, she went into anaphylactic shock and stopped breathing. She was immediately rushed to the intensive care unit where she was saved.
Hughes was released from the hospital about a week later, but was forced into emergency surgery the next day after doctors found two hematomas — swelling of clotted blood within the tissue — which needed to be surgically removed. Doctors decided to leave Hughes' wound open, opting to use a "wound VAC" — inserting a sponge into the wound along with a vacuum device that sucks out possible infection. On Dec. 3 Hughes went into surgery again to have the device removed and no infections were discovered. She was finally released on Dec. 4, after more than three weeks in the hospital.
Hughes will be staying in North Carolina for the next six months so that doctors can keep a close eye on her. She'll head back to the hospital twice a week for checkups and blood draws, but is already beginning to feel better. Blair said that he's back home in Edgewater with his wife, Jennifer, and his two daughters, Jordan and Haley. He said he's still a little sore and fatigued, but gaining his strength back quickly and getting back to normal.
Both Hughes and Blair noted that they hope their respective stories will lead to more individuals becoming organ donors, and even to more people joining live donor lists.
"My goal in talking to the newspapers locally and now in Colorado is that someone else will see it and it will spark an interest in being a donor," Blair said, "and maybe another person who needs a kidney will benefit from our story. It's a straightforward process, so hopefully someone will read our story and be inspired to help a family member or a stranger."
For Hughes, there are still a lot of question marks. She noted that there's no guarantees in regards to how long her new kidney will last and that she still faces continued issues with her cystinosis. But she's dedicated to keeping herself as healthy as possible, and making the most of life.
"I still have everything that comes in hand with my disease like muscle wasting and crystals in my eyes that could lead to blindness," said Hughes. "But if I take my medications and stay on top of my health and happiness, and do everything in my power than I'm looking forward to having a long, happy and extraordinary life. And hopefully I can go back out to explore Colorado and out west. It's all an opportunity that I'm so excited to have now."