Kick the "Holly"-Cystic Kidneys to the Curb

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Kick the "Holly"-Cystic Kidneys to the Curb

Join me on my journey to find a living kidney donor and living with Polycystic Kidney Disease.

09/04/2025

August 27th, they came out!
Sept 2nd, I came home!

Kidney is happy and thriving!
🤞for a smooth recovery!

08/26/2025

Now that the big day is finally here, I just wanted to take a sec and thank everyone for helping me get here to this point.

To my best friends, I'm sorry that my life has been a drama whirlwind over these past 4 years and that you've had to listen to me cry, complain and come through all of my struggles, every single day. I wouldn't have gotten through what I did without your shoulders and there could never be enough words to express just exactly how much just being there for me means, I've been lucky to have met and made such wonderful friends in this crazy life.

To my mom, I don't even know where to start. Thank you for being my rock for the entirety of my life. Thank you for taking care of me, and my daughter while I've been declining and needing all the help. I really don't know where I'd be without you, and your love, support and sometimes firm rulings. It's incredible what you do for me and know it hasn't gone unnoticed.

To the people I've met along the way, that have supported us through the Sofia stuff and now my own scary health journey, being able to talk about the stuff on my chest when I feel like I've unloaded too much on my friends or my family has been so appreciated. All the kind words and love sent my way means so much to me.

To Dustin, Thank you for giving me your kidney. What a selfless thing to do, to undergo unnecessary surgery (for you) to give me more time with our daughter. I don't think there are words for what that means to me. Sofia doesn't know it yet, but she will once she understands everything.

The next time you hear from me, I'll have one kidney, and probably be in a world of pain 🙈
💚💚💚💚💚💚💚💚

08/18/2025

Well, today was a long freaking day.

Halfway to the hospital, mom's car broke down, so Dustin came and picked us all up and took us, and the carseat over to university hospital. I carried the car seat around the hospital, 😅 never again.

Meetings, meetings and more meetings was what today looked like. A chat with the social worker, my nurse coordinator, the pharmacist, an ecg (yes, I just did one 3 weeks ago), a chest xray and finally a meeting with the transplant surgeon.

We talked about visitors, for extra ears for all of the information that's going to be thrown my way, and anti rejection medications, and all the details, including making sure to take a picture of my huge cysty twins and exactly how the procedure will go.

Finally the day was done, and my uncle rescued us and drove us all home. Sofia fell asleep on the way home but I just have to mention how good she is. Growing up in the hospital has sure been a weird experience for the both of us.

9 days to go.

07/29/2025

Well.......

The long awaited day has finally arrived.

We have a "Holly-cystic" kidney eviction date.
The cyst-y twins are making their exit....

Aug 27.

After 4 years of continuous decline, 4 long (short) weeks to go.
And if you ask me how I'm feeling about it,
All panic, no excitement. 😅
😭🤮😭
The nerves, the worry, the never ending list of stuff to do.

So, there it is.
Booked!

07/11/2025

I'm not going to lie,
I did not go into today's appointment very hopeful.
It's only been two weeks since my last appointment, and though nothing is changed from then really in terms of my bloodwork, they've decided its time to ask the transplant team to find a date.

So,
After literal years of badgering, and general exhaustion, they're FINDING ME A DATE!!!

They've also increased my baking soda meds and added tums, because my blood is a little too spicy for their liking currently.

Overall, it was a shorter appointment and I must have looked crazy in this heat wave carrying my sweater, but I sure was glad to have it sitting in that room waiting.

Not sure how I feel yet, obviously this is exciting because it's one step closer to the bump-on-a-log part of my life being over, but the looming surgery, and very hard recovery is at the forefront of my brain.

Ive got an echo coming next week and Aug 8 I return to see the doc. Not sure if I need to remeet with the surgeons again, but 🤷🏽‍♀️ guess we will see.

💜

💜

06/28/2025

An update:

My appointment today felt so long, with so many people coming to talk - the social worker, the dietician, the nurse case manager, the student and finally, my nephrologist.

It's always so much information to take in, and often leads to just feeling completely overwhelmed. I took some time tonight to myself to just listen to some music and process my thoughts and so, here they are.

We communicated about all of the things that are happening to me, more regularly than ever before, like cysts getting caught in my ribs and being uncomfortable for days, because you laughed too hard with your best friend, or the backstabbing pain that happened last week just opening a jar. And all the times I almost pass out standing up too quickly, which happens often with a four year old and three dogs.

My blood pressure was 106/65, which they want, to prevent the cysts from growing too much too fast, because high blood pressure makes them grow.

Today I left the appointment with another appointment, July 11.

I have an echo/ecg the following week, and then hopefully the month after I'll have my date, provided my kidneys can hold on that long.🤞

It wasn't a date, but the wheels are in motion, so there's that.

Fingers crossed my kidneys can just hold on this last little bit, until my retests are all finished and they can figure out a time and date.
Thank you for supporting me through this. I can't even explain how much it means to me to have such an incredible network of loving supportive people behind me through this.

💚

06/25/2025

It was almost a whole year since I've posted here, and though I'm still waiting for my lifechanging date 🤞 I've got an appointment with my nephrologist on Friday.

Thanks to the internet and the bloodlab, I'm able to read my own bloodwork results and since February, where my function was 13%, it has dropped by almost half, to 7%.

Here's hoping that it's not much longer now. Kidney failure is exhausting, and these days, I'm not doin much.

Please keep us in your thoughts, and your fingers crossed for a date, or at the very least, no dialysis and a promise of a date.

💚

06/16/2025

Bloodwork day🥳👀

Always a blast 🤭

07/03/2024

Hi,
Its been a while since I've updated here. I'm a couple weeks away from another appointment with my nephrologist but still haven't heard ANYTHING about a potential date for surgery.

Overall, I'm feeling okay. Okay looks different everyday. Some days I'm exhausted, others I hurt, but the hardest part to sit with is the constant living in limbo, or on pause.

I haven't been to work since October 2020 and though I have thoroughly enjoyed being able to stay home with Sofia, I miss my job, the getting out of the house, talking to people, I think that's what I miss the most. The regulars and the occasionals, the stories they love, whatever they're celebrating.

🤞our time comes soon.

02/29/2024

Apparantly it is rare disease day.

It's everyday for me.
Polycystic kidney disease.

Multiple cysts that have grown on my kidney, weighing ME down and decreasing function.

02/25/2024

An update, though it's not much, and it's everything all at the same time.
I've reached 11% function - and am exhausted 90% of my day.

Doc says they're pushing to find an OR, as I'm asking for a much longer than normal surgery, to live as pain-free as possible post transplant.

Will know more soon, hopefully.

12/09/2023

Yesterday was another checkup with my nephrologist.

My function dropped again (13%), which isn't surprising. My function won't go up and it will likely drop function quicker going forward. I also have been feeling lucky because he said last September that I'd need to be starting dialysis within 6 months.
It's been over a year since then and excuse my language, but my body said "f**k you and that" and has held on for the life of them.

I've also lost more weight. I started having to lose weight in order to get placed on the transplant list. I started at around 220 lbs, and I'm down to 169 currently. It was not easy and definitely would not recommend using kidney failure as a weight loss journey. 👎

My blood pressure was low, they took it while I was sitting, and then again standing. They want it low because high blood pressure makes the disease progress.

Just a couple more things and then our teams can communicate.
Scary.

That's all for now.

Address

Saint Thomas, ON

Website

http://linktr.ee/hollyspkdjourney

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