http://linktr.ee/hollyspkdjourney

Kick the "Holly"-Cystic Kidneys to the Curb, Saint Thomas, ON (2026)

02/28/2026

From two barely working kidneys, a year ago to one highly functioning kidney.

11/19/2025

Well, its been almost 3 months post transplant now. Basically one week away, but I've got some updates to share.

The first one,
I had my stent removed finally two weeks ago and that all went fine and then the surgeon called me yesterday and told me that I have no more weight lift restrictions, and I'm cleared from his standpoint! The second I got off of the phone with him i picked sofia up and gave her the biggest hug. Its been a long time coming!

Shortly after I got off the phone with him, the kidney clinic called and informed me that they found something called a ' BK ' Virus in my routine testing. In true Holly fashion, I couldn't discern the difference between 'dk' and 'bk', so to confirm the difference, I asked "like donkey Kong?" No.... more like Bob King. Cue the panic!
What does this mean for my kidney?
How serious?
What's the treatment?

So to ease my mind, I spoke to other transplant patients and asked them if they had had it. I'm so thankful that social media exists in today's day and age because being able to speak to my other kidney friends really helped calm my mind.

Basically, its a dormant virus we (mostly) all get as a child and once my immune suppressant medication took over, it let the virus surface. So they're cutting my one anti rejection med in half to let my body fight and monitoring. This worried me, because what if my body decides to also fight my kidney. I feel less stressed about this now, because my kidney friends are also on the same dosage of medication and thiving! There's no symptoms for me, but things to watch out for are vision changes, urine changing colour and weakness.

Overall, still feeling good. Went to my first little concert/show last week since transplant and really enjoyed my time out getting back to "my normal". Thank you to everyone still following this journey and for all the encouragement for all this time.

Can't explain what it means 💚🫶

10/13/2025

Happy Thanksgiving to all of our friends and family!

When 2025 started, life sure looked very different. My kidneys were still holding on to 13%- 14% function, I felt lost, stuck in some limbo hell of battling between my brain - who wanted experiences and to travel, show Sofia what the world has to offer and just not be limited by my illness, and my body - who wanted nothing to do with any of that.

Then came the drop in function, which increased the urgency to book the surgeons. The fear of the surgery itself, the fear of the post surgery which held a lot of unknowns. Would the kidney work? Would my body reject? The pain, from phantom kidneys or incision pain. The mental anguish of being cut open, down my entire torso and how I'll view myself with a giant scar. The week before transplant was spent beating my brain with worry, and to look back on that now, it was torture and unnecessary. I've seen first hand what the transplant experience looks like. I'm not the first in my family to transplant, and you know what else? I probably won't be the last either.

Its been a really eye opening experience, to say the least. Post transplant, there's clarity. I view myself stronger and while at the moment I'm incredibly weak, the point is that every day is better than the one before it. I'm just happy that my gut isn't protruding out anymore, that was really hard to accept mentally after delivering Sofia at 25 weeks, this giant gut and questions from the peanut gallery about why I look pregnant when I'm not. If there's one thing that I've learned from all of this, it's that PKD is not for the faint of heart.

In true Holly fashion, I still have more to say, so I'll move onto that now.

I'm thankful to be where I am sitting today. Thankful to have the people i have in my life, walking alongside me through this journey. Thankful to be able to care about people and be cared about too. Thankful to be able to eat a delicious meal and enjoy it without not being able to breathe because my abdomen is so packed with organs and cysty kidneys that nothing can expand. And I guess, just thankful to be alive to be able to celebrate these things with my loved ones for years to come.

I hope you all enjoy your day and also take some time to reflect on why you're thankful today. 🫶💜

🦃🦃🦃

09/19/2025

Here we are 3 weeks post transplant!

A couple of quick notes:
Thank you to everyone who shared and donated to the gofundme, stopped by with gift cards for groceries and gas, sent cards, checked in on us. The support is so appreciated!

A reminder to any and everyone who comes in contact with us, if you're sick or feel unwell - please do not approach me. The immune suppressant medication that I now have to take for life, allows me to catch any and everything that comes my way. I thank you for your continued understanding of this.

Now for the juicy goods.
They've changed my one uncovered medication to another one that also needs considerations unlocked from my benefits company however, this new one has a financial assistance program so those are currently 100% covered while we wait for my benefits company to get its act together and cover what I'm asking for, as well as reimburse me for alllllll the other medication I've paid for out of pocket.

Second, when they discharged me, on Sept 2nd, they told me to expect 2x a week visits for at least 4 to 6 weeks. I am now just over 3 weeks post transplant and they're comfortable letting me go two weeks between visits. I'm shocked but also so thankful that everything is going easier than I thought it was going to.

Third, lots of questions about how I'm feeling. I'm starving, and it's probably the prednisone, but i feel like I haven't stopped eating since I've come home. I barely ate pretransplant because with the size of my kidneys, there wasn't room for my stomach to hold meals, and for my lungs to expand at the same time. What a thing it is, to be able to breathe better. I've been off of painkillers since I left the hospital, barely taking regular tylenol and the biggest thing I guess is my energy levels. I take a lot of naps.

My creatinine, which was 651 when I was admitted with my bad kidneys, was 81 yesterday. So the kidney is working well and doin its job well.

Anyways,
I figured it was time for another update, so there we have it!

💚Thank you again for all of the love and support!!💚

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 🤭

Kick the "Holly"-Cystic Kidneys to the Curb

02/28/2026

11/19/2025

10/13/2025

09/19/2025

09/04/2025

08/26/2025

08/18/2025

07/29/2025

07/11/2025

06/28/2025

06/25/2025

06/16/2025

Address

Website

Alerts

Shortcuts

Share

Category