My Journey with PKD - Keith's Story

Hello, my name is Keith. I am 75 years old, and I am Indigenous, from the Tyendinaga Indian Reserve in Deseronto, Ontario. I have lived a simple life, working in construction most of my working years, then running an asphalt plant for a construction company until I retired in 2014.

I first found out I had polycystic kidney disease (PKD) back in 1994 when my oldest brother had a brain aneurysm. He was put on life support, and unfortunately passed away shortly afterwards. When it became time to donate his organs, they found cysts on his kidneys and told us he had PKD. It was the first any of us had heard of this disease. Quite foreign to us. My other brother and I were then tested for PKD, and we both found out we had PKD too. I was about 45 years old then. Unfortunately, my second brother also passed away with PKD.

It was a shock finding out about PKD, but I kept going, trying not to think about this kidney disease. I kept working and for the longest time, PKD did not change much in my life. My parents had already passed away, so I did not know their health history, or how this disease was passed to us children. Later on, I found out PKD is quite common among Indigenous people on my reserve.

Slowing the Disease

For years, PKD was just something lurking in the background, but in 2014, my blood tests showed my kidneys were starting to struggle. I saw a nephrologist in Kingston, who told me about a new drug called Jinarc™. He did not think I would qualify for it, but when I later moved to London, my new nephrologist put me on Jinarc™ right away. I have now been taking Jinarc™ since 2015. It has really helped slow down the progression of PKD, but now my kidney function is down to 11%. We knew Jinarc™ would not cure PKD, but would slow down the progression of this disease, which it has.

These days, my stomach, back, and sides are all much larger, but I am managing. I can still bend down alright, and I do not have any pain or kidney stones, which I am very grateful for. I get up a couple of times during the night to use the bathroom. Jinarc™ makes me drink a lot of water - about seven litres a day - and I always have to think about where the nearest bathroom is when I go out anywhere. Not pleasant, but it has to be - putting off dialysis as long as possible.

Gillian and Ellie

My wife, Gillian, is my rock. She has been with me throughout my fight with PKD, and she takes excellent care of me, ensuring I stick to my special kidney diet and watching out for me at all times. I miss some foods: lasagna, spaghetti, chili, bananas, potatoes, and even a simple baloney sandwich. My nephrologist and nutritionist help me, as well, to keep things in check, and I do what I can to stay healthy. I also try to walk each day for exercise, but I do tire easily now.

I am an animal lover, and have a precious and affectionate two-year-old miniature poodle, Ellie. She lays on my chest most days, keeping me company. She is keeping me motivated to keep my hopes up, and to push through any dark days I may have. Unconditional love, hands down.

PKD affects more than just my kidneys; it has caused fluid to build up in my lungs. I have edema in my legs and feet, also. I think about my illness every day. I am hanging in there, still walking around, and know I am luckier than others, who have PKD worse than I do. My hope is to stay off dialysis as long as I can, or to find a kidney donor sooner rather than later. My energy level is dwindling, and I am tired and cold all the time, which limits what I can do, now.

Searching for a Living Donor

I have been trying to find a kidney donor for about a year now. I started getting the word out through newsletters on many Native Reserves. A cousin of mine offered me one of her kidneys – such a selfless gift of life! But during the donor testing phase, she found out her kidneys were not strong enough for the transplant, and so the transplant didn’t move ahead. It was so disappointing – getting so close and then back to square one, searching for another donor again, or facing dialysis soon.

I do not like asking for help, but it is very difficult to find a donor on my own. I still have dreams, simple ones – to see my daughter in Arizona, to go out for a restaurant meal, to be able to travel again, or to just do normal things without the constant weight of PKD hanging over me. If you feel moved to help or want to know more information about PKD or donating a kidney, please reach out to me.

I am grateful for my wife, my family, my friends, and to all those who have supported me throughout my PKD journey. Thank you for listening to my story.

Sincerely,

Keith

Keith Through My Eyes: Gillian's Story

Keith and I have been together for 35 years, and married for 33 years. I do not know where I would be today without him; he is my right hand and my life. He keeps me grounded every day. Keith is a quiet, very sincere, and honest man. He has a gentle soul, but is a strong man, with a heart of gold, and spoils me rotten. We rarely have any kind of miscommunication – we are soul partners through and through, connected in a way that I cannot quite put into words. We were absolutely meant to be together, especially on this PKD journey. Ours is true love.

Quiet Strength

Keith does not say a lot, but when he does, his words have a wise and profound meaning and effect. Keith is deep in thought most of the time, and even though he is quiet, his presence always speaks volumes. We can finish each other’s thoughts many a time, as we are usually on the same wavelength. Amazing! It is like we were meant to be on this journey of life together.

Keith does not like flattery; he is a very down-to-earth man. He is a humble, quiet man, and I admire him deeply for how he has handled everything life has thrown at him, particularly in the past 12 years or so. He’s been through so much, and yet he manages to stay strong, not just for himself but for me as well. His strength is his quiet and methodical nature, and so he is able to put life traumas into perspective. It is very evident by the manner in which he handles the difficult and trying times.

Caring Gestures

We always hold hands when we go out. It is just our little way of staying connected, just by grabbing each other’s hand, giving one another a silent squeeze to say, “I love you.” I was given a stuffed heart years ago at a work-related management meeting. (Not sure what the heart represented then!) This little heart has carried tremendous meaning for Keith and I though for years.

We take turns hiding it in drawers, cupboards, etc., and every now and then, when you least expect it, you will open a drawer or whatever, and find this little heart looking up at you. It immediately places a smile on your face. It is our little secret – a simple but effective reminder of our love for one another. When Keith used to travel, I would tuck that little red heart inside one of his socks. It is hard to explain, but I suppose it simply means our hearts are still connected, even when miles apart. It is those small and quiet gestures that make our lives solid and connected.

Mindset

These days, I try to look after him as best I can. I make sure he is hydrated, does not get overly tired, and stays as comfortable as he can be. Keith keeps his life struggles inside, even when times can be challenging. Sometimes as he sits quietly, I will ask him what he is thinking about. His famous last words are, “I’m okay.” That’s Keith in a nutshell – never complains about his PKD or anything else, and always keeps things closely inside, not wanting to burden anyone with any of his struggles.

We both try to stay positive. We know that dwelling on the negative will not do us any good, but it is not always easy to do. There are days when the weight of this PKD journey feels very heavy, but we hold on to each other, and that seems enough to carry on to the next day or time. Keith is my heart and soul, my strength, and my quiet place. I love him more than words could ever give justice to, and my only wish is to have him well again. He is a wonderful, kind, caring, thoughtful, genuine and loving man.

I pray that we will be able to find a new kidney for him soon, so that he can have a transplant, stay off dialysis, and live a normal and happy life once again – feeling well, full of energy, eating normally and having his life back. Not having to pretend anymore that he is well, but genuinely feeling well once again.

Just little things, but huge to us.

Sincerely,

Gillian

More

If you would like to learn more about donating a kidney to Keith, you can email the PKD Foundation of Canada and we'll forward any inquiries to Keith and Gillian.

To learn more about the process of becoming a living kidney donor, check out the resources available on the Canadian Blood Services website, here.

If, like Keith, you're searching for a living kidney donor, there are a number of excellent resources available on the Centre for Living Donation's website, the Transplant Ambassador Program (TAP) website, and the website for the Having Your Donor Find YOU! program.

We also have a number of webinar recordings about living organ donation.

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