Voices of PKD: Kelly Konieczny, AB
Hello, my name is Kelly Konieczny. I am a daughter, sister, auntie, wife and mother in my family and a friend to many. I live in a small farming community in Alberta and am currently on medical leave from an Educational Assistant position I held for 25 years.
This is my story in a nutshell.
I found out about my disease at the age of 21.
I had severe stomach pain throughout my teenage years and one night my boyfriend at the time (now my husband) had to take me into the ER. It was then that they found cysts covering my kidneys and my liver.
I was referred to a kidney specialist the next day and was followed closely by this same specialist for many years. He told me right from the start by the age of around 50 I would need a transplant and that this disease would progressively get worse throughout my life.
From my early 20’s until the age of about 45, I did my best to ward off the progression of the disease. I watched what I ate; made sure I was getting exercise; limiting my stress; and trying to be as healthy as possible.
My husband and I had three daughters. We travelled; we camped; moved onto a farm; and were enjoying life.
At the age of around 44, I started taking classes on dialysis and learning about the next steps of how to deal with my disease. It was determined that I was getting close to starting dialysis as my kidney function was getting quite low. I was not feeling well, unable to eat, feeling nauseous, very tired, and had low energy. I had constant headaches and my blood pressure was getting higher and higher. My backaches and stomach pain were getting really bad too.
It was at this time that my husband and a few of my family members took the first steps to see if they could be a live donor. Until you start dialysis, are in the process of starting it, or are in dire struggles, they will not move you onto the deceased donor list, and they will not actively help you in lining up a living donor. We were hoping that we could bypass dialysis and go straight to a live donor transplant, but we had no luck finding a match.
In 2019, I had the surgery to insert a PD catheter, which is where a special saline filters through your abdomen and clears the toxins that your kidney should. I sat with that for a few months until they thought it was time to get started. Once the time had come for the training however, it was determined that because of my body frame and the size of my enlarged kidneys, I was not able to carry enough fluid to be able to filter toxins. I was very disappointed because although PD filtering is more time-consuming, you can do it portably. Being able to travel was always very important to me, but now this was not an option.
Within two weeks, they had me in for training to do home hemodialysis. Hemodialysis treatment is usually held in a clinic. Because of my age (46) and the fact that I had support at home, they agreed that I could train and do my treatments at home.
This was all going on during Covid, so the surgeries I had to remove the abdomen catheter and add a chest catheter were done all on my own, which was scary.
My husband and I moved to Edmonton for a month in November/December 2020 to learn how to run the hemodialysis machine on our own. We made it home just in time for Christmas.
It is nice being able to do treatments at home at a time that works for me each day, but the sole responsibility of running the machine (its care, the treatment set up, and how the treatment goes each day) is solely on our shoulders. Honestly, every morning I wake up and the stress sets in that I have to dialyze. Will it go well? How will I feel? Will my machine have problems? If I had to go to a clinic to dialyze, I’d have to drive 45 minutes to the nearest clinic four times a week. We finished our training just before Christmas of 2020 and have been doing hemodialysis at home ever since.
It is very draining waking up every morning during the week knowing that I have to do a treatment. A lot of the times I come off my machine feeling pretty rotten and feel that way for the rest of the day.
I have to dialyze four times a week at least and often try to do five. It takes an hour to set up the machine, I dialyze for 2 1/2 hours and it takes about 40 minutes to clean everything up. So as you can see, it’s a very big part of our days.
Some of the symptoms I have after treatments are high blood pressure, severe headaches, muscle cramping and pain, general nausea and tiredness. It wears on your mind when you know you have to do dialysis to help your kidneys filter toxins from your body, but it makes you feel so rotten.
We are still trying to pinpoint why I feel this way during and after treatments. It has taken nearly two years of trying numerous things. Just when something works, my body changes or something throws a wrench into things and we are back at square one.
In March 2021, I had my right kidney removed. Because of the progression of the disease, I was starting to feel sick and my stomach pain was getting worse. They were hoping that I would be prepared for a transplant by having it removed ahead of time and healing from that surgery before getting a new one. We have been waiting ever since. We have been waiting before that actually.
I have found out that I have 100% antibody sensitivity. This means that I have the highest possible sensitivity to other organs and antibodies from other people. As you can imagine this makes it very difficult to find a match, because I would ultimately reject it. I am told that other people with 100% antibody sensitivity have had successful transplants, but the percentages are very low. In the surgeons words, “it’s not impossible but it is going to be very, very tricky. Be prepared to be on dialysis for a very long time.”
I am currently on the Canada-wide deceased list (for easily matched patients, this wait list averages at 7 years). I am also in the Paired Exchange Canada wide program, where four times a year they try to make chains of patients and donor matches by seeing if exchanges can be made. We are also working through a list of live donors. I am trying desperately to add people to it daily, in order to help look for a living donor match.
I have had several people do the initial testing but none have been a match for me. I must continue to be my own advocate and keep adding people to this list, in hopes that my needle in the haystack is found.
This story is not only my story. It is my husband’s story, my children and my family’s story. They carry stress and worry. They wonder if I’ll ever be healthy again and be able to enjoy growing old with them. It’s very sad that my daughters have to help take care of their mom at the age of 48. They should be enjoying their young adulthood. My husband is a saint and it weights heavily on my mind that right when we could be enjoying our time together, it is clouded by the fact that my disease is so controlling. I consider myself a strong person, but the mental health aspect of dealing with this everyday is very daunting. 27 years of dealing with this is taking a toll.
I am A+ blood type, so any A or O types might work. BUT… they tell me to not turn anyone away just because of blood type.
Thanks for joining me here, for reading my story and for sharing it with others. I hope you will consider contacting the info below. Even if not for me…for someone.
For more info on how you can help.