Julie Jones has always been a big believer in donating the gift of life – blood, tissue, and organs – because of the great need for them. It’s part of the reason she has been the on-site coordinator for blood drives in Lynnville for several years. But in November, Jones took her desire to help up a level by donating one of her kidneys to her friend’s son, Andy Long.
Jones’ journey to kidney donation started with a desire sparked as a youth and included many experiences, including a “God-directed conversation,” that led her to gifting a kidney to Long eight weeks ago.
DONATION MOTIVATION
Since her surgery, Jones has frequently been asked why she decided to donate. The Sully resident credits several experiences over her lifetime that pointed her in that direction.”
“I don’t remember if it was in junior high or high school when I first read the statement, ‘Don’t take your organs to heaven. Heaven knows we need them here.’ That statement really spoke to me, and once I got my driver’s license, I always made sure that I was marked as an organ donor,” Jones said.
Several years ago, a friend of Jones was having kidney issues. Without any reservation, Jones offered that if her friend needed a kidney, she would donate one. Fortunately, the friend’s kidney function improved, but that was the first time Jones thought of being a living kidney donor.
Jones’ awareness of kidney disease and interest in kidney donation increased on a mission trip to Cambodia in February 2018. Her missionary friend there, Brianna, had a sister who had been a kidney donation recipient. Also, Brianna and her husband had a close friend, Borith, whose 30th birthday they celebrated while Jones was there. Borith had recently been diagnosed with kidney disease and needed dialysis, which was quite a challenge for him logistically and financially living in a remote area of a third-world country.
“I would have donated a kidney to him in a heartbeat, however, health care in general is quite lacking in third-world countries, and kidney donation is not an option,” Jones said. “Tragically, Borith passed away of his kidney disease in February 2021, leaving behind his wife and two young children. His death broke my heart, and I couldn’t help but to regret I hadn’t found a way to donate a kidney to him.”
Jones learned a lot of what it looks like to live with dialysis from a dear friend who cared for her adult son until his passing in April 2021. He was not eligible for a kidney transplant due to the very aggressive genetic disorder he had that had caused his kidney disease.
“It was heartbreaking to see his health decline and the devastation his parents felt in losing him,” Jones said.
Meanwhile, toward the end of 2020, Jones read a KCCI news story of a family looking for a kidney donor for their young son. Jones filled out a couple of questionnaires detailing her health history through the University of Iowa Organ Transplant Center.
Jones didn’t hear anything further about the young boy until May 2021, when she received a letter saying that the boy had received a kidney and was doing well. The letter asked if she would consider being an altruistic donor, meaning would she donate to whomever she was a match for? The same day she received the letter, Jones called and said yes, she would consider that.
GETTING APPROVED TO DONATE
Over the next two months, Jones answered a lot more questions, did a “ton” of lab work, had “tubes and tubes and tubes of blood work” done, and did a 24-hour urine collection test. After she passed all those tests, she was asked to schedule a full day’s worth of appointments at the University of Iowa Hospital Transplant Department.
On Aug. 11, Jones and her husband, Eric, met one by one with the entire transplant team – a surgeon, nephrologist, nurse coordinator, social worker, psychologist, living kidney donor advocate, dietitian, pharmacist, etc. She underwent more lab work and scans. After all that, on Aug. 16, she was notified that she was an excellent candidate to be a living kidney donor.
Now the question was, who would be the recipient? With more than 100,000 Americans waiting for a kidney, it would not be a matter of “if” a match would be found for Jones’ kidney; it would just be a matter of when.
“A GOD-DIRECTED CONVERSATION”
The day after Jones’ full day of appointments in Iowa City, Jones sat beside Cathy Van Maanen at a Lynnville Friends Church council meeting. After the meeting, in the midst of their conversation, Jones learned Van Maanen’s son, Andy Long, had kidney disease and was on dialysis. After some questioning, Jones learned Long was in the process of being worked up for a kidney transplant at the hospital in Iowa City.
Jones could hardly believe her ears. She then told Van Maanen she was in the process of being worked up as a kidney donor and had just completed her final round of testing at Iowa City the day before.
“The next day,” Jones said, “Cathy told me she didn’t know why she had told me about her son because it was a matter they really had not discussed outside of their family, to which I responded, ‘I think I know why you told me that; it was a God-directed conversation.’”
Jones informed her coordinator that she had possibly found someone she wanted to receive her kidney. After Long was approved as a kidney recipient, extensive testing revealed Jones’ kidney would be a good match for him.
Long and his wife, Lori, were shocked when they received the phone call that a kidney had been found for him because he wasn’t even on the active list for being matched for a donor yet, plus they had been told the wait could be a few years. They were even more shocked when they found out the surgery was scheduled to take place in just a couple of months on Nov. 11, 2021.
WAITING TO DONATE
For Jones, Nov. 11 could not get here quickly enough. She was ready to have the surgery done and was a little impatient, but she did have the distraction of finishing her training for and running the New York City Marathon on Nov. 7, a mere four days before the surgery.
“I joked that my usual post-marathon tradition was donating blood, but this time I just kicked it up a notch by donating an organ,” Jones said.
She’s had people ask her if it was a difficult decision to make to donate her kidney, however, she feels like she never really wrestled with the decision at all.
“I started working my way through the process and prayed that if it was God’s will for it to happen, that He would open the door, and if it was not His will, that He would close the door. Every step in the process, the door just kept opening wider and wider … I have felt beyond a shadow of a doubt that God has orchestrated every detail of this journey perfectly, and I give Him all the glory!”
DONATION DAY
Finally, Nov. 11 arrived, and Jones underwent the surgery, called a hand-assisted laparoscopic donor nephrectomy. Once her kidney was removed, it was taken to Long’s operating room. As soon as his artery and vein were connected to it, the kidney immediately started producing urine.
Jones went home the day after surgery. She admits the first couple weeks were pretty rough, but added how it really is amazing how quickly the body can heal itself. She has been told it will take three months for her pelvic muscles to heal completely.
For kidney recipient Long, the first six weeks of recovery involved close monitoring for any signs of rejection, multiple procedures done, and frequent blood work. It has been a bit of a roller coaster ride with good news and then concerning news and then good news again, but he has been assured all these things are normal.
Even just a couple days after surgery, Long realized that although he thought he felt good on dialysis, it was night-and-day different to how good he felt with a healthy, functioning kidney.
Long and Jones both had restrictions following their surgeries, including not lifting more than 10 pounds for six weeks. Both were able to return to their regular job duties on Dec. 27. For Jones, that meant returning to her role as a radiation therapist, though she technically returned to work on Dec. 3 on light duty as she filled in for secretaries.
MEETING THE ORGAN RECIPIENT
Julie Jones is pictured with the recipient of her kidney, Andy Long, at Lynnville Friends Church, where they met for the first time on Dec. 24.
Although a physical piece of Jones was given to Long on the day of the kidney transplant, Jones didn’t meet Long in person until Christmas Eve. That’s when Long, his wife, and three of their six kids came to Lynnville to have Christmas at his mom’s house. They attended the Lynnville Friends Church (LFC) candlelight service, where Jones was also in attendance.
“It was so very special to meet them face to face, to hug them,” Jones said, “and we visited for about an hour before deciding we should each head off to our respective family Christmas gatherings, although we could have talked for much longer.”
As they near the two-month mark since the surgery, Jones is beyond thankful for all the prayers, support, and encouragement she and Long have received from their family and friends, especially from the people at LFC. The congregation was given the opportunity to donate financially toward Long’s medical expenses, and the community was also given the opportunity to donate blood in his honor at the December blood drive at LFC.
THE GIFT OF LIFE
The entire kidney donation journey has given Jones the desire to raise awareness of kidney disease. One of the many things the kidney does is produce a hormone that tells the bone marrow to produce red blood cells. When the kidneys are not functioning properly, a person is at risk of anemia, which was the case for Long. He needed 20 units of blood in the 18 months he was on dialysis leading up to his transplant. A total of 58 units of blood were donated in his honor at the blood drive in Lynnville last month. Interesting to note, Long’s mom, Cathy, has been providing delicious cookies and bars for the blood drives in Lynnville the last couple of years.
By donating her kidney, Jones indeed gave a gift to Long, including a better quality of life for hopefully years to come. Since the kidney came from a living donor, it has a higher likelihood of lasting longer than a kidney from a deceased donor.
“Best-case-scenario statistics show Andy’s new kidney could last up to 20 years,” Jones said, “but my prayer has been from Ephesians 3:20, that God can do immeasurably more than we can ask or imagine, so I am praying for the kidney to last even longer than 20 years.”
Jones is happy to share her story of kidney donation in hopes that it inspires others to consider giving the gift of life, too.
“Organ donation is certainly not for everyone,” she said, “but if anyone out there would even remotely consider it and wants more information, I’d be happy to sit down with them and share more details of my story – the good, the bad, the ugly as well as the absolutely incredible and amazing! I would totally do it again, if I could!”
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MAKING A NEW FRIEND
One amazing connection Jones made through her organ donation is with a woman from Cedar Rapids named Jama, who donated a kidney the same day as Jones, both at the University of Iowa Hospital. They are pictured at left with their nurse coordinators as well as one of the transplant surgeons and are wearing the T-shirts the university gave them that say, “I’m an organ donor, #recycleyourself.”
From left: A nurse coordinator, Jama, Julie Jones, another nurse coordinator, and a transplant surgeon are pictured at Jones’ and Jama’s two-week follow-up appointments after they each donated a kidney on Nov. 11.
Jones and Jama connected before their surgeries through a private Facebook group for living kidney donors, which was a great source of information and support for them both. The two ended up being in side-by-side operating rooms at the same time on Nov. 11.
Amazingly, Jama had recently reconnected with a college friend who happens to be friends with Andy Long – Jones’ kidney recipient. Jama’s kidney was flown to Colorado to her matched recipient, whom she hopes to meet one day if the recipient is willing.
“Jama and I have messaged back-and-forth with each other every day since the day of surgery and have become good friends after sharing this incredible experience,” Jones said. “It was very special to meet her and her husband in person at the University of Iowa Hospital Transplant Center the day of our two-week follow-up appointments, which was the day before Thanksgiving. It has been so great for us to share our experiences and our recovery process. In donating a kidney, I have gained a great friend!”
