Dr. Jackie Miller, Washington, can still remember the day about 10 years ago when she knew she wanted to donate one of her kidneys to someone waiting for a transplant.
A patient of hers was in kidney failure and searching for a matching donor. Miller was eager to be tested, but then her patient found his match elsewhere.
The urgency subsided, but Miller’s interest didn’t. She still wanted to donate a kidney, for anyone who might be in the same situation that her patient was — in desperate need of a lifesaving transplant, but having trouble finding a matching donor.
But the timing wasn’t right for her family. Miller’s children were young, and she is the sole breadwinner.
“She’s the heart and soul of our family,” Miller’s husband, Tim Huber, remarked.
He suggested waiting until their children were older, and she agreed. Life went on.
Fastforward to 2014. Miller was talking with a dentist she knows who told her how he had recently donated a kidney to an old friend who had kidney failure and was on dialysis, an artificial process that cleans the blood of toxins, which is the function of the kidneys when they are working properly.
That started Miller thinking again.
Miller made a call to the Washington University and Barnes-Jewish Transplant Center in St. Louis (855-925-0631) and talked with a nurse coordinator about the procedure for being an altruistic kidney donor, meaning she wasn’t donating her kidney to someone she knew.
Then last August she did it. Miller underwent surgery Aug. 18 to donate her left kidney to a complete stranger.
It was only a month ago that Miller found out the recipient’s name and that he is doing well. So far they have only communicated by email and text messages, but just knowing that he is doing well has brought her true joy.
Not many people realize that offering to donate a kidney without having a specific recipient in mind is even an option, said Gene Ridolfi, R.N., program director of the Washington University and Barnes-Jewish Transplant Center.
These donors are called “altruistic” or “undirected,” and they are rare.
“It is unusual, like only 3 percent of total kidney transplants are altruistic donors,” said Ridolfi.
Yet all organ donors — whether they are undirected or directed — are “exceptional,” Ridolfi noted.
“It’s part of their nature to want to help people, even if it means going through a surgical procedure and donating a kidney,” he said.
Becoming a Living Donor
The process to becoming a living kidney donor, directed or undirected, begins with providing an extensive health history, which is followed by extensive testing to make sure the donor is completely healthy and so are both of her kidneys — the one she will donate and the one that she will keep.
“They check you from head to toe,” said Miller, noting she had to have blood and urine tests, her annual mammogram and have meetings with a social worker, a psychologist and, finally, the surgeon before she could be cleared to donate.
“The requirements are really very strict about who can donate, because from our perspective, this is an otherwise totally healthy person who doesn’t need a surgical intervention, which is what we will be doing when we take one of their kidneys, so we want to make sure they are absolutely 100 percent healthy and have the highest likelihood of having no impact from donation,” said Ridolfi.
Miller said as the process went on, she took the passing of each test as a sign from God that she was doing His will.
“I prayed a lot about this, but each test that I passed was another indication to me that this was something I was hoping God was willing me to do,” she said. “I did a lot of research and a lot of praying.”
Huber and their children felt the same way.
“If God didn’t want her to do this, He would have put up a roadblock in there, and I had to trust in that,” said Huber.
The extensive medical history and testing that Miller underwent before being cleared for donation was especially critical since her father, the late Dr. Frank Miller, died of kidney cancer, and one of her daughters has had some issues with her kidneys (although she is not in need of a transplant).
As an undirected kidney donor, Miller was able to set the time frame for when she donated. That allowed her to select a time of year that is usually slower at her office, Walde Miller Orthodontic Specialists.
She was able to have the surgery done laproscopically, which meant that recovery would be much easier and faster.
Five days after surgery, Miller was feeling well enough that she walked 2 miles, and at 13 days after surgery, she was back to work. She was tired, but that was to be expected.
“They prepared me so well,” said Miller of the transplant team. “They told me what to expect, and they were there for me. I could call anytime. The recovery was really no big deal.”
Miller said there was no expense to her for the donation, except for the time she needed off of work. If anything, it felt like a gift to her that she was able to help someone else who was in such great need.
“I feel blessed, I really do, that I could donate,” Miller remarked. “It was an incredible journey.”
Recipient Calls the Kidney ‘Jackie Lou’
Miller wasn’t allowed to know anything about her kidney recipient or how he was doing after the surgery, so she prayed a lot for his well-being.
“That was my biggest concern,” she said. “I was so worried about the recipient, hoping everything went well.”
In February this year, Miller went in for her six-month follow-up, and learned that her health is perfect. Her bloodwork was good, and her right kidney has actually grown to make up for the missing left kidney.
Shortly after that, Miller heard from her recipient. He sent her a short note to express his deep gratitude:
“You are certainly my Hero!” he wrote. “Your precious gift has forever changed my life for the better and given me time for my family and to be alive again. The graciousness with what you bestowed on myself and my family has been a wonderful delight and reinvigorated my faith as well as my health and happiness.
“I am a simple man who has worked hard my whole life . . . I believe that I have been blessed many times in my life, but through your goodness and kindness and learning the art of humbleness and faith in humanity, I have received one of the biggest blessings ever from your selfless gift . . . I want you to understand the gratefulness and thankfulness I have for what you have done. Nothing less than saving my life. You are really amazing.”
Miller said reading that the first time brought tears to her eyes.
“He said all of his tests are great. It’s a very strong kidney. He calls it Jackie Lou, now that he knows my name,” she said with a laugh.
Some 85,000 People in Need of Kidney Transplants
Miller said her goal in sharing her story of being an altruistic kidney donor is that it encourages more people to consider doing the same and look into the possibility to see if it’s right for them.
Ridolfi said Miller’s story is a good reminder of how important organ and tissue donation is to the community and around the world.
According to the United Network for Organ Sharing (UNOS), nearly 120,000 people are waiting for an organ transplant, and a new person joins that list every 10 minutes.
Of those 120,000 people in need, around 85,000 or 90,000 are waiting for a kidney transplant, said Ridolfi. The list at the Washington University and Barnes-Jewish Transplant Center includes between 1,300 and 1,400 people in need of an organ transplant, and probably 900 of those are waiting for a kidney, he said.
“A kidney transplant is the best treatment for someone with end-stage kidney disease,” said Ridolfi.
“Toxins in the blood are excreted through urine, and when your kidneys aren’t functioning, you’re not making urine and in the short run, that is what dialysis does in place of the kidneys,” he said. “It doesn’t ever do it as good as the kidneys, and dialysis can cause a lot of other problems as well.”
Miller, who many people across Franklin County know for her longtime work with the Washington Overseas Mission, which plans annual trips to Honduras to provide free dental and medical care to people who have no other means of receiving it, is hopeful that more people who are able to donate a kidney will consider doing it.
“It was an absolute joy for me,” Miller remarked. “It was a beautiful journey.
“We’re given so many gifts. We are so blessed . . . And if we are able to give those blessings to others, that’s what it’s all about,” she said.
Miller is willing to talk with anyone who may have questions about being an altruistic kidney donor. They can reach her by email at email@example.com.
Union Woman Is in Need of Kidney Transplant
Mary Kriete, Union, is one of those 85,000 people or so who are waiting and praying that a suitable kidney donor will be found for them soon.
Come July, she will have been on the transplant list for three years.
“I was told that I am moving up on the list, but I don’t know what that means really. They told me to start fundraising because there will be costs (from the transplant) that are not covered by insurance, medications and things,” said Kriete.
Currently Kriete has dialysis four times a day, for about an hour each time. Her kidneys are functioning at 8 percent, down from 20 percent when she first started receiving dialysis.
“The doctor said I might get to the point where I have to do dialysis five times a day,” said Kriete.
Having kidney failure has meant that Kriete isn’t able to work anymore. She had been a home health nurse. Nor is she able to do any activities or exercise because she just doesn’t have the energy.
Kriete is hopeful that once she receives a kidney transplant, she’ll be able to go back to work. She’s also looking forward to doing things like swimming.
“That’s the first thing I want to do when my incision is healed,” Kriete remarked. “I want to get really physically fit. I just want to do so many physical things that I’m too tired to do now.
“I want to get another pet too. I had to get rid of my kitty because they told me cats like to go after the tubing. I miss my cat, and I hope I can get another pet,” she said. “There are just so many things I want to do when I get my new kidney.”
To find a living donor to provide a kidney would be the best scenario, since kidneys from living donors lead to better outcomes for the recipients. That’s because only the best kidneys are taken for transplant from living donors, said Ridolfi.
“We’ve been able to thoroughly test the donor and know that it is a healthy kidney. In all cases, it’s typically a very, very good match, otherwise, we probably wouldn’t consider them for donation,” he explained.
Kriete, who has Type O blood, has had around eight or nine people offer to donate a kidney to her, but they didn’t pass the medical clearance.
“People have been very generous wanting to try to help me,” she said.
Friends have been holding fundraisers to help Kriete raise the money she’ll need to cover the portion of her transplant not covered by insurance. They are working with Help Hope Live, a nonprofit fundraising organization.
Its mission is “to support community-based fundraising for people with unmet medical and related expenses due to cell and organ transplants or catastrophic injuries and illnesses.”
Several fundraisers have already been held to benefit Kriete and more are planned for this year:
• A Scripture Tile Class, Paint ’n Sip, at Artzy Walls, 520 E. Main St., Union, will be held Saturday, April 22, from 4 to 6 p.m.
Participants will make an 8-by8-inch tile with a Scripture verse. Cost is $40 per person. People can bring their own drinks and snacks.
To register, go to http://bit.ly/2pqdHt7, call Lyn at 314-581-1099 or purchase a ticket at the studio, open Monday through Wednesday, 9 a.m. to 5 p.m.
• High Tea at Jennie & Grace, including a silent auction, will be held Sunday, May 7, from 2 to 4 p.m.
Kriete’s birthday is May 5, so guests are encouraged to bring her a birthday card.
Refreshments will include tea sandwiches, sweets and drinks. Tickets are $25 per person and can be purchased at Jennie & Grace, 219 W. Main St., in Downtown Washington, or by contacting Andi Kempf at 636-221-4991 or firstname.lastname@example.org.
• Dine to Donate at Applebee’s has been set for Wednesday, Nov. 15, from 4 to 8 p.m.
There also are donation cans set up at Wimpy’s restaurant and Williams Brothers Meat Market, both in Washington.
Direct donations also can be made online at www.helphopelive.org (search for Mary Kriete) or by calling 1-800-642-8399.
Checks payable to Help Hope Live with “In Honor of Mary Kriete” noted in the memo section, can be mailed to:
Help Hope Live, 2 Radnor Corporate, 100 Matsonford Road, Suite 100, Radnor, PA 19087.
All donations are tax-deductible.
For more information on those events or on helping Kriete, people may contact Andi Kempf, 636-221-4991 or email@example.com.
Tell Family, Friends You Want to Be a Donor
For people who are not able to be living organ donors but still want to donate their organs once they pass away, there are several ways to go about doing that:
Signing the back of your driver’s license is a great idea, but that may not be seen until it is too late.
The No. 1 way to ensure your organs are donated after you pass is to talk to your family and friends about your wishes because ultimately they are the ones communiating with the doctors, said Ridolfi.
“Often times we’ll see in a crisis event where the family says, ‘No, I don’t want to donate the organs,’ but if that person had talked to their family first, told them how important it is to them, the outcome could have been different and maybe we would be able to help more people,” said Ridolfi.
To learn more about becoming a living kidney donor, people can go to Barnes-Jewish.org/transplant.
To make an appointment or to start the evaluation process, people can call the Washington University and Barnes-Jewish Transplant Center at 855-925-0631.