Voices of PKD: Kelly Konieczny, AB
Hello, my name is Kelly Konieczny. I first shared my PKD story with this community in September of 2022. At the time, my kidneys had failed (one had been completely removed) and I was on dialysis four or five times per week, waiting for a kidney donation.
I'm still waiting.
I've been on dialysis now for over three years, and I've been waiting for a kidney transplant for more than four years.
I'm on the Canada-wide deceased transplant list. This waitlist averages about four years for easily-matched patients. Unfortunately, I fall into the category of highly-sensitized patients. I have high levels of antibodies that would react to a transplanted organ.
I never had any idea that sensitivity was even a thing. When they told me that my antibody sensitivity was 100%, meaning that out of a 100 people, 100 of them wouldn't be a match, I was really shocked.
How does the sensitivity happen?
Your body builds up antibodies to foreign tissues, from organ transplants, blood transfusions, or pregnancies. I've had three pregnancies. It just so happened that my antibodies grew to 100%. It's not impossible to find a kidney match for me, but it makes it that much harder. There's a possibility that if someone was a close-enough match, the transplant team might be able to make it work.
I've been trying my best not to dwell on my odds, but I have to share this information, because those of us with 100% sensitivity, how else are we ever going to let that information be known if we don't share it?
To improve my odds of finding a kidney, I've been enrolled in the Kidney Paired Donation (KPD) program for about three years. The KPD matches transplant candidates with living donors. If you have someone in your life willing to donate a kidney, but their kidney is not a match for you, you both enter the KPD where they try to create chains to find another donor that is a match for you, and a recipient for your donor's kidney.
Every four months the KPD, run by Canadian Blood Services, has a Match Cycle. You have to be cleared through testing into the Match Cycle in order to be considered for a match during those four months.
Recently I've had a really difficult setback in my search for a kidney. My transplant coordinator called me on January 11, 2024, and told me that my provincial health authority had withdrawn the Northern part of the transplant program from the winter KPD Match Cycle (from February to June 2024), because of a shortage of anesthesiologists in northern Alberta.
You never know when your matching donor will be in the system. If I'm not in the paired exchange for four months, then there's a zero chance that I'm going to get a kidney transplant through the KPD during that time.
I need a miracle.
I work very hard to bring potential donors to the table, but I feel like I need to be given every opportunity I can. Not being put into the paired exchange for the next four months is hard. I have two people in the paired exchange with me, and I have a third person on the waiting list if one of the others can't follow through.
I'm not sure if there's anything else I could do to get back on the upcoming Match Cycle, but I wonder why they can't include patients who are highly sensitive like me. A kidney transplant would change my life in so many ways, and this feels like a setback.
Life on dialysis
Dialysis hasn't been easy for me. Until about six or seven months ago, I would feel quite ill after I dialyzed. And the whole dialysis process itself is very draining.
I dialyze at home, and four days out of seven I'm on my machine. Set-up takes 45 minutes to an hour, and then I dialyze for 3 1/2 hours, and then it takes another 20 minutes to clean up and re-prep the machine for next time. It's a real constraint on your day.
If something comes up to kind of throw a wrench in the routine, that's when the anxiety might start to take over. Maybe something happens to the machine; maybe something happens to our water filtration system. Maybe I'm getting alarms on the dialysis machine, and I have to troubleshoot. There's always a number that you can call, but you're still alone.
It is nice to be able to dialyze at home, rather than going to a clinic on their timeline. It would be an hour's drive for me each way, to get to the nearest clinic. I still have to go there periodically to fine-tune my levels.
I don't work anymore. I never know what my days are going to be like - how I'll be feeling before my dialysis run, and after my run. It limits your daily planning. It wears on you. I'm starting to find that it's really affecting my mental health. Each morning I wake up, the first thing I think of is whether I have to dialyze that day or not. I've been on dialysis for 3 1/2 years now.
When I first went on dialysis, I was very optimistic. I thought it wouldn't take long to find a kidney match and get a transplant, because I knew a lot of people willing to step forward and donate for me. None have been a match yet.
I take Wednesdays off - I need to have one day where I'm not feeling the anxious dread of having to dialyze that day.
I try to stay positive, but it's getting harder. I'm going to be 50 this year. My children have moved out, they're starting their own lives. I should be looking forward to an empty nest, but it's so hard.
I often think that I shouldn't say anything about how hard it is, and I shouldn't complain, but I also believe that it's okay to feel discouraged. I need to validate my own feelings.
I don't look unhealthy; the majority of people don't understand the depth of my concern, and my daily struggle - the work that I have to put in to try to stay healthy and positive, and to keep my mind healthy.
I meditate, and I'm part of a strong spiritual group, and I believe that that has helped me. And chatting with people who are in the same boat, or who are working on their personal growth, has helped too. It's harder when you don't have anyone to talk to.
I do a lot of physical and mental work on my own. But you also have to be vulnerable and admit the things that are truly troublesome for you. I think sharing your wounds and your vulnerability helps yourself, and helps others as well.
Update as of January 23, 2024: After advocating for myself, and consideration by the regional decision-makers, highly sensitized patients and their donors will be re-entered into the February Match Cycle run.
Of course, this does not mean that I will automatically get a match. Because of my antibody situation, it is still a needle in the haystack, but at least I’m being given the opportunity.
Canadian Blood Services prefers that transplants are completed within three months of a match, but because of the current surgery backlog in northern Alberta, this cannot be guaranteed.
In my particular case, I am okay with that, because the alternative meant that I wouldn’t even be included in the February matching run. So waiting extra time for surgery if I do get a match, is welcome.
It is unfortunate that all of the northern Alberta recipients were not put back in the exchange, but it is a start to have the highly sensitized ones re-entered.
This is something that I am going to continue to advocate for.
Some suggestions that I have for other patients who find themselves in a situation where they need to advocate for their needs:
- Have a supportive group of people around you.
- Don't be afraid to ask questions, and do your own research.
- Use your voice to advocate for yourself.
Some other steps that may be helpful:
- Reach out to a mental health professional through your family or nephrology healthcare team, if possible, to help you cope with your feelings, and brainstorm other professionals to connect with, who may be able to help.
- Reach out to others in your community who are also dealing with the same situation, to rally together, strengthen your mutual efforts, and amplify your message.
- Reach out to the leadership of the local or regional healthcare facility or organization, asking for more information about any concerning change in decisions or policy change.
- Reach out to the appropriate local or regional government representative (e.g. Member of Provincial Parliament, Provincial Health Minister, etc.) to advocate for yourself or your community.
- Reach out to your local or provincial news media, especially if there has been a recent decision or change that affects a number of people across the region.
- Reach out to the PKD Foundation of Canada to raise awareness and spread the word through our community.
The PKD Foundation of Canada will be offering a patient webinar in February 2024 on the topic of the Kidney Paired Donation program. Watch our website and social media for more details, or sign up for our emails to be kept up-to-date with all PKD news and educational programming.
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