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6th Annual Garage Sale This Weekend for Kidney Disease

Christine Whelan FEO, May 11, 2023, VOL. 4 ISSUE 19

With two more procedures behind them now, sisters Barb Hampel and Carolyn Nagel are focused on awareness and encouraging people to “share your spare”.

Since the sisters “on a mission to end PKD” were photographed for the cover of the Fort Erie Observer’s last edition, a lot has happened. In fact, one sister has had a kidney removed and the other received a new one.

The garage sale is still a go May 12-13 at 3824 Disher Street, Ridgeway. The price of everything is a donation to the foundation.

Barb and Carolyn belong to the Polycystic Kidney Foundation. Barb explained, “We are doing the garage sale this month for the foundation and then there’s the walk-a-thon in Toronto and we always go.

“Our team is called Family Affair and our logo is Share Your Spare. We wear T-shirts with the team name on the front and the logo on the back for the walk-a-thon.”

The sisters are not physically capable of doing the garage sale but friends and family have stepped up and are going to run it for them.

Barb added in awe, “Because of the article in the last Observer, the Ridgeway Legion, Branch 230 at 2028 South Mill Street in Ridgeway, has stepped up and they are going to run a garage sale the same Saturday and all their money is going to the Polycystic Kidney Foundation.”

If it rains on Saturday, everything at Carolyn’s will be moved to the Legion.

“We are hoping with this awareness, more people will come forward and be living donors,” Barb explained with purpose.

About TKD

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.

Barb explained on a personal level, “Our kidneys are too big. Most people’s kidneys are the size of a fist. Ours are the size of a football. It’s very hereditary. But if a family member doesn’t have it, they don’t pass it on. With every pregnancy, it’s a 50/50 chance.”

Two out of Barb’s three sons have it. “My third one is 31. So far, nothing has shown up, but it can show up by the time someone’s 40.”

Their dad passed away at 35. “He had a stroke at 29 then a second one due to high blood pressure. They never knew about this disease back then.

“When we were kids, we didn’t know it was hereditary but when Carolyn got sick when she was 18 with a bad kidney infection, the doctor began to wonder. That’s when we all got tested.

“In the last eight to ten years, Carolyn’s condition started getting worse. And then she had the aneurysm. That was a big thing. Luckily, she survived that.”


Barb had to have a port put in her chest, ready for dialysis, on April 6 of this year, and on April 20, she had a kidney taken out.

There’s a process. Barb explained, “I have to go to dialysis now three times a week. I wasn’t on dialysis until I had a donor. I couldn’t go on the Kidney Paired Program until I had a kidney out. You have to be ready to go so that’s why I had all this done.”

Barb’s Donor: A Living Donor

Barb’s friend, Sue Ward, is donating her kidney. “We’ve been friends since we are three years old. We’re not a direct match. So, in June there will be a pairing. She’s still going to be my donor, but we will be matched up with others. Hopefully, there will be matches in June. She will donate to somebody else and then, full circle, I’ll get a kidney.

“Sue is so excited about being a donor. She’s so proud of it. I said to her, ‘You should be. You are going to change people’s lives.”

Barb was surprised to learn while talking with people that not many are aware there is such a thing as a living donor. The sisters are on a mission to get the word out there that this is an option and that people are needed to be living donors.

We talked about what happens with a living donor. “They go over your health with a fine-tooth comb.”

Besides the many different physical tests, there are several questions asked, making sure the donor is not being coerced, there is a support system for them and a psych test is done to make sure the potential donor is emotionally able to go through the process. St. Joeseph’s Healthcare in Hamilton, where the surgeries take place, is very thorough.

“Hopefully in June, they find me a donor and in July or August, I will get the transplant. If not, they are confident by September and then I will get mine in October or November.”

While Barb had a kidney taken out on April 20 in preparation for a new one, Carolyn is further ahead. She got her new kidney on April 19.


The younger sister also shared her journey. “When they took out my kidney last year, I had a really rough go. It wasn’t the surgery so much. It was everything else afterward.”

She explained that one rough day, in tears, she called her sister, “Do me a favour. Just go live your life. This is going to be you soon. Just go have fun.”

Carolyn’s antibodies are so high that she is in the top five percent of most difficult matches to find. “My cousin from Colorado had gone through all the testing to be my donor. Every test came back a match until the very last one. Our antibodies didn’t match.”

Her cousin agreed to go into the pairing program. “That’s why I had to have my kidney out in July, to be healed and ready for October.”

With the pairing program, she got a match but it didn’t work out in the end. She was put through all the programs after that.

“And then they put me on the deceased donor list.” She was put on the top of the list.

“My sister and I kept saying, this is our year.”

Carolyn’s Donor: A Cadaver Donor

On April 18, Carolyn’s cell phone rang. “And I was told, ‘We have a kidney for you. We have a possible donor.’

“He said it was going to be a cadaver donor. Then I just started bawling. It was unbelievable, just so emotional. It was amazing news, but I realized, there’s another family going through hell.” I could hear the different levels of emotions in Carolyn’s voice.

“I heard, ‘How soon can you get here?’ I told him I was an hour and a half from St. Joe’s. That was about 6:00 pm. He told me to pack an overnight bag and get there between 8:00 and 9:00.”

She got there at 8:30. “They ran tests that night. By 2:00 pm the next day, I was told, my kidney had arrived. It’s a go.”

Carolyn described an amazing moment for her. “When I got wheeled into the OR, it felt like it was just like the movies. I could see the woman sitting at a table, like a kidney basin, and the kidney was in there. I could see it. She was working on it, squirting water on it. And I thought, oh my gosh, that’s mine!”

Carolyn now goes for regular follow-up tests, “All my tests are coming back great.”

She will keep the second kidney. “As long as there are no issues with it. The second one doesn’t normally grow as rapidly. The one they took out was 31 centimetres. Normal size is about five.”


It has been so important to Carolyn that the family of the donor knows she is grateful. The normal procedure includes the anonymity of the donor but she needed, somehow, for the family to know. “I have said, please, just tell them I am so thankful. When the chaplain came in to pray with me, I asked him to please pray for the family.”

She talked about the massive support that has come in, letters and phone calls to their mom. “It’s all so emotional. The community has been just unbelievable.”

State of Mind

Barb and Carolyn didn’t let the disease stop them. “Most people didn’t even know we had TKD,” Carolyn added that with this disease, typically there is pain but neither of the sisters had the pain with it.

Carolyn was diagnosed when she was 18 years old. “And it never changed my life until my aneurysm.”

She said each night she would sit outside a bit. One night, Barb came up to her and said, “I’ve got a very serious question for you.” There was a pause. “Where should I put the belly button ring?” We both laughed. It was an example of how humour has been ever-present and a great way of coping, to help them get through it all.

Looking forward, Carolyn says she plans on getting back into baseball. “I was told, to give it a couple of months, and when I’m totally healed, I can play.” She added, “I can’t wait to get back to baseball.” I could hear the smile in her voice.

It seems, what the sisters have been saying has turned out to be true — this year really is their year.

Please come out to find great treasures and support a great cause. garage sale is

May 12-13 at 3824 Disher Street, Ridgeway.

The price of everything is a donation to the foundation

Photo: Carolyn Nagel, Sue Ward & Barb Hampel

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