March 19, 2024

Voices of PKD: Mary Banman and Amanda Armstrong, London ON

Mary’s story

My name is Mary, and here is a bit about my journey. Growing up, I lived a normal life. I didn’t even know what was in store for me.

When I was 25, my doctor told me they found cysts on my kidneys, and that I had PKD. He asked if any others in my family had it. I said I didn't know.

Since everyone in my family had the same doctor, he tested them all, and all were negative for PKD. The doctor told me not to worry about it, and that I could enjoy my life until the age of 55-65. I shrugged it off, because way back then I was young, and didn’t think it was serious.

Fast forward to the age of 47. I was sent to a nephrologist, and from him I learned that if no-one else in the family has PKD, it is called a spontaneous mutation. Only 5 percent of ADPKD patients are the result of a spontaneous mutation.

At this point I still had 60 percent kidney function. Long before I even needed to look for a donor, my two nieces and my youngest daughter said that when the time came, they would donate.

Mary_Amanda_1.pngWhen I was 54, I was told it was time for dialysis. Since I had family members who wanted to be tested to be a donor for me, I went with a chest catheter for dialysis, and we chose home hemodialysis. It took 8 weeks to learn how to dialyze at home, and I was blessed that my husband learned how to do it.

First my brothers tried testing to become my donor, but they didn’t meet the requirements. So many others also offered to be a donor, went through the testing process, only to find out they weren’t eligible: friends of friends; my daughter.

One niece almost made it through the testing process, but the last test indicated that she wasn’t eligible to donate, either. I saw how emotional everyone got when they told me they couldn’t donate. We had a Facebook Page to spread the word about my need for a kidney, and it had lots of shares, but I still didn’t find a donor.

I had to go to the emergency room frequently because of bursting cysts. My enlarged kidneys pushed on every organ inside of me. My surgeon, Dr. Luke from London Health Sciences Centre’s University Hospital, told me he would be willing to take out both of my kidneys, along with performing a transplant.

Mary_Amanda_2.pngA year and 8 months went by. When I was 57, one of my nieces, Amanda, who from the beginning had said she wanted to donate, started the testing process to see if she was eligible to be my donor. I knew she passed the first few tests, but then I didn’t hear anything more about how testing was going.

Amanda called me near Christmas of 2021, and said she saw something at a store that reminded her of me, and she was going to bring it down. My family was over that day as well, so we all visited a bit, then Amanda gave me the present. I didn’t think much of it, as we have always had inside jokes and funny gifts in our family.

I started opening it, fearing that something was going to pop out and startle me. Inside the package was a can of kidney beans and a note. I was really confused that beans reminded her of me, and didn’t even notice everyone saying, “What kind of beans are they?”

Mary_Amanda_3.pngSo I looked at the note, and it read, “To my second mom; God has blessed me with two healthy kidneys, and I’m about to give you one of them!” She had been approved to be a kidney donor!

A feeling that I can’t explain came over me. I cried lots of happy tears! The room was full of emotion, not a dry eye anywhere.

Although Amanda was approved to be a kidney donor, she was not a match for me, and so we entered into the Kidney Paired Donation (KPD) program. We were told that it could take weeks to years for us to be matched into a paired-exchange chain.

Our names were entered in the KPD program in February of 2022, and within a few days Amanda called me. They had found a match for us already! They would call back soon with a date for the surgeries. There were more happy tears.

I went to the grocery store at the end of April, when suddenly my phone rang. It was Amanda. She said, “The big day is May 11!”

I started bawling in the grocery store, and a few people looked at me strangely! I remember saying to Amanda, “That’s 11 days!” I was excited, and scared. They asked if I could have my transplant on May 11th, and if Amanda could donate her kidney on June 1st.

Mary_Amanda_4.pngWhen the day of my surgery came, I asked my surgeon to take pictures of my kidneys, and he did. I wasn’t a very big person, but my kidneys were almost 19 inches and 23 inches. The little donated kidney from the paired-exchange donor was beautiful; my surgeon showed me a picture of it, too. When I awoke from surgery, I felt so much better with my PKD kidneys removed!

My little bean started working while they were stitching me up, and now in 2024 I’m doing great. This kidney is a fighter. Amanda went in for her surgery as scheduled, and donated her kidney. She did really well - I was surprised at how quickly she bounced back. I tell Amanda that she saved two lives: mine, and the person's she donated to. The same goes to my anonymous donor.

We are sharing our story because my oldest daughter has inherited PKD. Her kidneys are now failing at the early age of 37. We want to get the word out about how many people are in need of kidney donors.

This is also for the son of a friend my age that I met online several years ago. She had PKD, and was transplanted the same year as I, in September. Her son has also inherited PKD.

I plan to meet my friend face-to-face one day. We supported and encouraged each other online for almost 5 years. Her PKD was also a spontaneous mutation, so we had each other to lean on.

A huge ‘thank you’ goes out to my niece Amanda, and the donor who donated to me, as well as the whole transplant team, my surgeon, and all those involved in the transplant process. I’m also incredibly thankful for all those willing to get tested, to see if they were eligible to donate a kidney for me.

I hope that one day there will be a cure for PKD, and all kidney diseases. God has shown me miracle after miracle. Amen.

This is my side of the kidney donation story, and my niece Amanda would like to share her story, as well.

Amanda’s story

For as long as I can remember, I have offered my aunt one of my kidneys if she ever needed it. It became reality when her kidneys started to fail.

In 2020, a few family members went to get tested to see if they were eligible to donate. Unfortunately, one by one they went through the extensive testing process, only to find out they weren’t eligible to donate after all.

For many of them, the testing process was both a disappointment and a blessing. If they hadn’t been tested, they wouldn't have found out that they had certain health issues, themselves.

Mary_Amanda_6.pngI went to get tested in 2021. That is where my journey starts. I called up the London Health Sciences Centre and told them I would like to be tested for my aunt, Mary Banman. They sent me the paperwork, and I filled it out and sent it back. I was then called in to do the testing. I was disappointed to find out I wasn’t a match after all; my aunt has type O-negative blood, and I had type B-positive. 

LHSC introduced us to the Kidney Paired Donation (KPD) program, where I would donate to a stranger, and my aunt would be guaranteed a kidney from another stranger. At this point, I still didn't know if I had even qualified to donate.

While Mary was on dialysis for what seemed like forever, I got the call in November of 2021 that my kidneys were very healthy, and that I was able to donate!

Mary's oldest daughter was with me when I got the call, and I was offered the opportunity to tell my aunt the great news myself, before she heard from her transplant coordinator. My cousin and I planned to go to Mary's house to tell her the news!

We went and bought a can of kidney beans and some flowers, and I wrote a letter to Mary, and wrapped up the gift.

It said, “To my second mother; God has blessed me with two healthy kidneys, and I am going to bless you with one of them!” (Even though she wasn't directly getting one of mine.) It was close to Christmas, so my note ended with, “Merry Christmas!”

It just so happened that I was with her daughter, her grandson, and my mother (Mary's sister) when I went to share the news. Mary's husband and son were coincidentally also there at the time; her husband was home for lunch, and her son had happened to come by for lunch as well.

A few months after telling her the news, I got a call from the transplant team, and they told us that they had found a match through the KPD program! I booked Mary in for the next possible transplant day, May 11, and mine for June 1, 2022.

Mary_Amanda_5.pngBoth surgeries went very well. Mary's new kidney started working right away, and my donated kidney did, too. I had a great support team!

This is my side of the story, from the donor’s point of view. To see my aunt thrive again, able to enjoy her kids and grandkids, has made it all worth it.

On June 1, 2024, it will be two years since I have donated. If I could keep donating, I would! Many think that living with one kidney must really affect your life. But I don't even notice that I am living with only one.

People have asked, “Well what if your kids need one?”

My response is, “What if they don't need one?”

I would hope that someone would come along and donate to them if they should ever need a transplant. I have no regrets.

My question now to everyone is, “What are you waiting for?”

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