HI. I ‘M KRISTA!
Let me start by saying thank you!
If you are reading this, you have chosen to be here, and I appreciate it more than you could imagine. I’ve always been a person who likes to help others, so asking others for help is difficult for me, but I realize that telling my story is necessary. I am 49 years old, married to my soulmate, and do work that brings me great joy. I enjoy spending time with family and friends, gardening and doing yoga in my spare time. Essentially, I feel like I am in the prime of my life and I am grateful for all the experiences that I’ve had. However, the past 18 months has brought some difficult news that will require a lot of strength, perseverance and determination.
I’ve always been a person who likes to help others, so asking others for help is difficult for me, but I realize that telling my story is necessary.
Diagnosis
I was diagnosed with Autosomal Dominant Polycystic Kidney Disease (ADPKD) in my mid-twenties. I had noticed blood in my urine and went to see my family doctor who ordered an abdominal ultrasound. The ultrasound showed multiple cysts in my kidneys, consistent with PKD and I was referred to a Nephrologist (Kidney specialist). I won’t go into detail about PKD here – use this link if you want to know more about it - but in short, ADPKD is the most common genetic cause of kidney failure, meaning it is a genetic disease that children have a 50% chance of getting from their parents. I was the first person in my immediate family to be diagnosed with PKD, and since it does not skip generations, it meant I got it from either my mother, father, or both. My father had already passed away, so my mom was tested, and it was discovered that she had ADPKD as well. Since then, some other members on my mother’s side of the family have also been diagnosed.
Meeting with a Nephrologist for the first time, she explained that PKD and its outcomes are usually predictable based on the way the disease progresses in other family members. At that time there was no treatment, and I was told that there was nothing I could do to alter the course of the disease or to stop / slow the growth of the cysts. Since neither of my mom’s parents had kidney failure and my mom had decent kidney function, the Nephrologist assured me that it was unlikely that I would experience kidney failure in my lifetime and I just needed to be monitored on an annual basis. In my mid-twenties, I understood that to mean ‘something else would kill me first’ and so I found a way to continue on with my life and not worry about it.
Disease Progression
For the next 25 years, I was monitored by a Nephrologist every 6-12 months and they kept an eye on my kidney function. At one point, my mom and I had the same Nephrologist, and we would go to our appointments together. I recall at the last appointment we attended together, the Nephrologist told me that my kidney function was worse than my mother’s – it wasn’t by much - but in hindsight, I probably should have questioned why that would be. However, then the covid pandemic hit and I did not have any follow-up for about 3 years because we moved, my Nephrologist retired, and I was without a family doctor or Nephrologist during that time. Sadly, my mother passed away in late 2021.
In early 2023, I finally found a family doctor and he ordered the standard blood work as part of an annual physical. To my surprise, my kidney function had declined significantly. Previously, my function had only been declining 2-4% a year, but in the 3 years over covid, my function had declined from 60% in 2019 to 28% in 2023. I was immediately referred to a new Nephrologist in London, Ontario and saw him for the first time in May 2023. He ran my numbers through several PKD models which estimated that I probably had approximately 5-10 years before my kidneys would fail. While I struggled with this new information (remember, I always thought that ‘something else would kill me’), I also figured I had some time to adjust to this and to learn more about what kidney failure meant and what my options were.
If I continue to lose function, I could experience kidney failure in the very near future and require a transplant to survive.
Another Kidney Disease?
In September 2023, I had another follow-up with my new Nephrologist and my kidney function had fallen to 25%. This decline in function was faster than the models had suggested and upon further examination of my history, my nephrologist suspects that I may also have a second genetic kidney disease that affects the kidney filters. With just one of the diseases, it is possible that my kidney function would have been fine to last me through life. However, he suspects that the combination of the two diseases is what has led to the more rapid decline in function. Most recently, my kidney function was 18% in June 2024. Kidney failure usually occurs somewhere around 7-10%. Unfortunately, there is no way to predict exactly when my kidney function will reach the point of failure. It is possible that could happen this year, or in 1-3 years.
I am pretty overwhelmed at the thought of what I am facing in the months ahead and try to take things one day at a time. I choose to appreciate what I have now rather than worrying too much about the future.
How Does This Impact My Life?
Currently I am feeling ok. Health wise to look at me, you probably wouldn’t be able to tell that I am sick however, I am starting to experience symptoms associated with kidney failure such as severe fatigue, nausea & loss of appetite. I understand that this will only continue to get worse as my function continues to decline. I try to exercise fairly regularly – my husband & I do hot yoga, although I don’t have the same stamina in classes as I had even 6 months ago.
Last year, I also worked with a kidney dietician. Dietary needs are very complex when you have chronic kidney disease and vary greatly depending on each individual’s blood work as well as the actual cause of kidney function decline. While there is still nothing I can do to stop the progression, recent research suggests that there may be ways to slow the growth of PKD cysts and possibly delay the onset of kidney failure. I hope that research will one day find a cure or at least some viable treatment to delay kidney failure for those living with PKD.
I am pretty overwhelmed at the thought of what I am facing in the months and years ahead and try to take things one day at a time. I choose to appreciate what I have now rather than worrying too much about the future, but the symptoms and knowing what is to come definitely takes a mental toll. I am super grateful for my husband, step-son, sister and all the extended family, friends and colleagues who are so supportive. Plus we have this fluffy orange cat whose cuddles and purr has so much healing energy - I can’t even explain!
What Does This Mean For My Future?
While I try not to dwell too much on the challenges that lie ahead, I also realize that I can’t bury my head in the sand. I will require dialysis or a living donor in the very near future and the process to evaluate a donor takes several months. While dialysis would help to keep me alive, it is tough on the mind and body, and the ideal treatment, with the best outcome, is to have a living donor transplant. Additionally, having a living donor transplant before needing dialysis increases the odds of transplant success and reduces the number of medical procedures I would have to endure. Unfortunately, there are factors that prevent many of my immediate family from being a living donor – this is often the case with PKD since it is genetic and runs in families. So, I am hopeful that I can find a living donor among extended family, friends, colleagues, or a complete stranger. I have now begun the transplant evaluation process and my transplant center is also ready to receive inquiries from potential donors. The evaluation process is lengthy as they want to ensure safety for both donor and recipient, so if you are interested in understanding more about donation, please follow the link below.
As a side note, you might be wondering about a deceased donor. Due to the number of people waiting for a kidney, the list for a deceased donor is very long and often people are on dialysis for several years before receiving a deceased donor kidney. Additionally, a living donor kidney lasts longer on average than a deceased donor kidney.
Wondering Where I’m At In This Process?
I am posting regular updates on the blog page. Please visit there for the most recent information on my journey.
How Can You Help?
My goal is to find a living donor so that I do not have to go on dialysis, and the fact that you are here, reading my story, helps. You could be the reason I find a donor. The more people who know about my need, the better chance I have. Here are a few ways you can help:
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This is the ultimate gift. If you would like to find out more about being a living donor,
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For me to find a living donor, my story needs to be shared widely. Word of mouth, email, social media - sharing my story with the people you know could help me find the donor I need. We’ve made it easy -
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This is going to be a challenging journey and I would love your support. If you’d like to sign up to be a part of my cheering squad and be kept in the loop
click the button below to find out how to help.
I can’t believe it’s August! It feels like this summer (and year) is flying by! I have several updates for you since my last blog post, so I’ll waste no time and get right to them! But before I do, I want to once again express my gratitude for you being here and reading this!