Kick the "Holly"-Cystic Kidneys to the Curb

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.

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.

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.

They look SO GOOD!!!
Thank you Heather for all of your hard work!

💚 More orders for Holly's tribe heading out! 💚

If you'd like to support Holly on her journey to find a kidney, please reach out to either of us and we will get you set up.

Decals, t-shirts and hoodies - always available!

Kick the "Holly"-Cystic Kidneys to the Curb

My favourite part is the kidney ribbon is on my window. 💜💚

😍
How awesome does the decal look? 10/10
💜💜💜
Thanks for spreading my story out in MANITOBA, CANADA!

*everytime I stand up.

I thought I would check in here today.
Last weekend, Dustin and I went to the NF concert in Toronto, it was a really great show and now I have had a sinus infection that I've been dealing with.

While we were in Toronto, I also received word that the interview I had with the Hometown St Thomas magazine was officially published! I received a copy yesterday but was also able to read online! I will post a link in the comments! Would love to know what your favourite picture was from my spread!💜

T-Shirts and decals are done, I am just waiting for the business cards I had printed to finish printing and then pickups and drop offs can happen!
I am so excited for these!!!!

Hope everyone has a wonderful weekend! We are headed to the airshow! Not sure how Sofia is going to like it, but we'll see 🤣

The renal arteries are part of the circulatory system. They carry large amounts of blood from the aorta (the heart’s main artery) to the kidneys. Approximately 1/2 cup of blood passes through your kidneys from the renal arteries every minute.

Rejection occurs when the body recognizes that the transplanted
kidney is not its own and mobilizes the immune system to fight
against it. Rejection can occur at any time after the transplant, but is
more common in the early months.
Different medications are used to prevent rejection, either alone,
or in combination. These medications work by blocking the activity
of the immune system. However, rejection may occur even when
these medications are taken faithfully.

Prednisone can help prevent organ rejection after a kidney transplant because of its ability to suppress the immune system.

When you have too much potassium in your blood, it is called hyperkalemia, or high potassium. Having too much potassium in your blood can be dangerous. Hyperkalemia can even cause a heart attack.

The primary benefit of phosphate binders is that they lower the amount of phosphates in your body, which helps prevent hyperphosphatemia - also called "high phosphorus".

Normal working kidneys can remove extra phosphorus in your blood. When you have chronic kidney disease, your kidneys cannot remove phosphorus very well. High phosphorus levels can cause damage to your body. Extra phosphorus causes body changes that pull calcium out of your bones, making them weak.

Another type of dialysis

Today my family got up super early and went with me to university hospital for a morning packed full of appointments.

I'm exhausted.
So much information thrown my way.
😴

Paired exchange is when two separate but willing donors are each unable to donate to their intended recipients due to blood group (ABO) incompatibility or more rarely because of incompatibility of cross matching. The willing donors are matched with the other's respective recipient so that each recipient can receive a kidney with a compatible blood type. The Kidney Paired Donation Program is administered by Canadian Blood Services.

It is one of the most important sources of organs for transplantation. It accounted for 255 transplants in Ontario in 2012 and represents a significant portion of the increase in organ donation over the past ten years. However, the availability of organs from living donors does not meet the crucial need of about 1,400 Ontarians on transplant waiting lists. This is why it is critically important to encourage colleagues, friends and family to consider registering their consent to organ and tissue donation. Living donors are most often family members or close friends of the recipient. Other types of living donation are available and include anonymous donation, list exchange and paired exchange.

A common question is "Do I have to have the same blood type?"
The short answer is NO!

Because of the paired kidney donation program, donors are able to be matched with others and pair up someone else in the same situation.

https://professionaleducation.blood.ca/en/organs-and-tissues/programs/kidney-paired-donation-kpd-program

Normally, kidneys are about the size of a fist or 10 to 12 cm (about 5 inches).

My kidneys are roughly 26cm a piece - The length my 1 pound daughter was.

🙈🙈🙈🙈

Hypertension is common and occurs in a majority of autosomal dominant polycystic kidney disease (ADPKD) patients prior to loss of kidney function. Hypertension relates to progressive kidney enlargement, and is a significant independent risk factor for progression to end stage renal disease.