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A True Story of Three Sisters: An Incredible Year of Recovery and the Miracle of Living Donor Transplants

Christine Whelan FEO, May 9, 2024, VOL. 5 ISSUE 18

While one sister celebrates a first anniversary, the other sister celebrates the life-saving gesture of a lifelong friend.

Two weeks ago, I sat around the kitchen on a Friday evening, talking kidney transplants with Barb Hampel, Carolyn Nagel and Sue Ward.

It was more of an emotionally charged discussion than an interview as I was able to relate and contribute; my son, Aaron, and I just celebrated our fifth anniversary. On February 13, 2019, I donated a kidney to him. Barb, Carolyn and Sue liked hearing my success story. We are both doing well.

As they verbally compared incisions and paces of recovery, the three were in high spirits, proud. “These are our battle scars.” The battle has been against PKD.

Polycystic Kidney Disease is a genetic disorder that causes many fluid-filled cysts to grow in the kidneys. Unlike the usually harmless, simple kidney cysts that can form in the kidneys later in life, PKD cysts can change the shape of the kidneys, making them much larger. In families who have it, with every pregnancy, there’s a 50/50 chance.

Barb recalled, “I started my journey, with my catheter put in, April 6, 2023.” Barb had to have a port put in her chest for dialysis.

Carolyn followed, “I had my transplant that April 19.”

Carolyn got her call from the Cadaver Program, giving her only a few hours to pack and get herself to the hospital for her transplant a year ago last month.

She had been informed, “I was in the top 5% of the most difficult to match because my antibodies were through the roof.” So, when a match comes in for someone so difficult to match, they get the first chance.

And on April 20, 2023, Barb had her nephrectomy, a surgical removal of her kidney.

At this point, Barb, on dialysis, had to start considering a donor. She needed a new kidney.

She explained her limited options. “My husband, Wayne, was going to donate two years ago. After passing all the initial testing, when he went to be tested to see which kidney would be taken out, he was told, ‘You are disqualified. You have bilateral kidney stones.'”

She added, “And because PKD is hereditary, family members couldn’t consider donating.”

Sue’s Journey

Barb and Sue Ward have known each other since they were three years old. They call each other sisters from another mother.

“I had done my research a while back, years ago. I was waiting until it was the right time,” Sue admitted. “The transplant option was only going to be available to Barb once she ‘fell off the cliff’’, as it’s put.”

So, when Sue found out from Barb, it was time, “I started to do more background work. To ask the questions and try and find somebody else who had donated before without Barb knowing.”

She explained, “I didn’t want to get anyone’s hopes up, knowing what happened with Wayne.  I didn’t want to say anything to anyone in case I wasn’t eligible.”

Her testing was done at the Charlton Campus of St. Joe’s Healthcare in Hamilton.

And it took Sue only one day!

She explained the Living Kidney Donor Program, 1-day testing. “They take a limited number of people for that one day. It is offered once a month. You have to register for it.”

This donor program used to take several trips into Hamilton for testing spread out over time. This was hard for those who lived out of town and worked.

“It’s a long day. By the end of that day, I knew I was healthy enough and qualified to be a donor.” “Once she was deemed eligible physically, she met with a Social Worker for a psychological test.

Barb said, “Sue called me up and said, ‘I’m going to be your donor. I passed everything.'”

However, while Sue was physically and, mentally capable, with a support system and her affairs in order, she didn’t know yet if she was a match for Barb.

The next test was done. Sue explained, “They mixed our blood to see if Barb and I were compatible. We found out that, because of the antibodies, Barb would reject my kidney.”

This was a letdown for everyone—First Wayne, now Sue.

“But that was ok,” Sue perked up the mood. “Because we were met with a different opportunity.”

The option at this point was the Kidney Paired Donation Program.

Kidney Paired Donation Program

How Kidney Paired Donation Works is when a person (Recipient A) is in need of a kidney and has a willing donor (Donor A), but Donor A is either a poor match to Recipient A or not a match at all, the National Kidney Registrar, can find a recipient who is in need of a kidney (Recipient B) and has a donor (Donor B)

Carolyn had been in the pairing program with her cousin who lives in Colorado. “My cousin went through all the testing and then the last test with the antibodies, she didn’t match,” similar to Barb and Sue.

“So we both went into pairing.”

They were in that program, going through the process, when Carolyn, who was also in the cadaver program, got her call last April 19.

Confidentiality

Barb and Sue both admitted this part was nerve-racking. Until the surgeries were done, they couldn’t tell anyone. For many reasons, the pairing program had strict privacy rules. If any details were leaked out, the process was in jeopardy. They had to make sure they didn’t let anything out, as well as not get sick.

January 22, 2024: Transplant Day!

Once things got rolling, transportation was time-sensitive.

Sue stated, “My kidney went by police, from St. Joe’s to the airport, to another province.” She was told, “They fly with the pilot.” This way they limit uprising concerns.

And Barb, “My kidney got flown in from another province.”

In Toronto, drones can be used to transport the kidneys to get them past inner-city gridlock.

Free will is prioritized in this donor program. Sue was asked at the beginning, throughout the process, and to the last moments before going under if she was sure she wanted to go through with the surgery. “Until the mask went on me to put me under, I would still have the legal right to change my mind, no questions asked.”

Recovery

Barb and Sue were in the same hospital at the same time, but seemed so far away from each other, in different towers.

As the donor, Sue’s stay was much less than Barb’s. She was out of the hospital the following day. “But I wasn’t leaving until I could see Barb.”

Sue worked hard every day to recover, “To be the example to show others, it’s ok to be a donor. And I am now living a normal life. Unless you saw my scar, you wouldn’t know I am missing an organ.” She was back to work in two weeks.

Sue says the only thing she cannot do is contact sports where she might take a hit where the kidney was. “Other than that, I have no restrictions.”

Barb’s recovery took longer, as expected. But she stated that by this past April 6, the catheter and staples were out and she was doing well.

Support Systems

Carolyn, Barb and Sue have had good support systems of friends, family, co-workers and neighbours – before, during and especially after their surgeries.

“We’re so fortunate that we all had our villages around us,” Sue commented.

Carolyn added, “And the community became our village. Because I’m telling you, people stepped up, like dropping food and gift cards for places that delivered off.” They were so grateful for the help with food.

Congratulations to Carolyn – ONE YEAR!

On April 19, Carolyn celebrated one year with her new kidney with thankful enthusiasm.

“I had a pizza party with my aunt and cousins. Then, I celebrated at a restaurant with my son, Nicholas.” She added in gratitude, “I wanted to celebrate with my son, too, because he’s been through hell and back, taking care of and helping me.”

Carolyn smiled, “The first year is huge. And I feel amazing.” She noticed how she was not struggling anymore as she was before her transplant. She was able to get back to playing baseball last year and plans to return to it this season.

The Renal Transplant Clinic at St. Joe’s

They marvelled at how well the system is organized, with all the moving parts involved.

Carolyn admired, “They do their due diligence and are so thorough.”

“They were well-oiled. Transparent to me. Upfront. And the reimbursement program with the Trillium Gift of Life Network is helpful.” Sue was both impressed and thankful.

Living Organ Donor Expense Reimbursement Program is a program that helps reduce the financial expenses that come up for the donor.

About Finding Donors

When it was time to look for donors, what could the sisters do?

Carolyn shared, “We’ve had this condition for a very long time and we’ve just lived with it. Most people didn’t know about it. We didn’t talk about it. And I wasn’t going to go up to someone and ask them to give me one of their kidneys.”

So, she turned to her doctors and asked what to do. “They said to just start telling my story. You don’t have to ask anyone. Just tell your story. People who want to donate will come forward.”

Barb sighed, “To have people step up is so amazing.” She looked at her friend with emotion in her voice. “Honestly, you can’t imagine how it feels when someone steps up and offers. I still can’t believe Sue did it,” smiling.

Carolyn added, “None of us can.”

For those who are looking for a donor, some postcards can be given out to anyone who asks about how they could donate a kidney. “I had business cards made up like the postcards,” Carolyn said.

If you are interested in learning more about being a living donor, begin by doing your research and asking questions. You can call 905-522-1155 ext. 32156 or email livingdonors@stjoes.ca

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