It's all been done before

I am sorry for how long this post has taken to be made. I know you have questions and I am profoundly grateful for your care and support.

I’m still figuring out what is going on to be honest with you; but I will attempt to clarify what I can.

As you all know on Thanksgiving

weekend in 2024 my life changed for the better. I finally got the call that a deceased donor kidney meeting my needs had become available.

In a moment of sheer universal serendipity Frank was bestowed to me by a family braving the ultimate sacrifice. Their compassion and selflessness can never be repaid.

Frank was the runt of a pair of kidneys belonging to a unnam d young man. His more robust twin was given to a male fellow patient. Frank’s twin worked well straight away, but sadly wee Frank was what we call “sleepy”. This can happen with deceased donor source organs due to normal delays in metabolic function during the time they are “dead”

In a stroke of irony my sick, flawed body was VERY good at creating antibodies to attack Frank (who was doing his darned best)- and as a result I experienced early rejection.

Thanks to the best expertise of the UHN team and their quick actions, a plan of action consisting of several costly and medically advanced treatment, my team saved Frank and kept him functioning for a year.

It is part of the transplant process for a one-year ultrasound, bloodwork and general check up be preferred. So my 1-year appointment was scheduled for Dec. 6.

For the last couple of months I’d been more tired than expected. My nausea was more often. Life in our home is hectic; both kids are on the spectrum and Nahanni has had a very tough first semester of grade 9.

I hate to admit it; but I believe in self-accountability- I was overwhelmed. Back in the workforce after 5 years (though just part-time), balancing my role as a caregiver for 2 ASD teens and one medically dependent parent in LTC. There was too much to do and not enough Angie to do it.

And so I missed a few bloodwork appointments. No biggie right?

I made a change in my medication packing system. But I *knew* I was distracted and scattered brained and didn’t do my diligence in ensuring the sweet little 18 year old helping me understood my instructions. A little over two weeks missed of one of my five antirejection drugs missed. *Big dumb oops* Definitely my fault.

So I knew to expect something. Did I anticipate full-blown epic rejection? No. And often these issues would be manageable. Unfortunately in a cosmic game of irony my own immune response is XMEN Wolverine level- so though I’m a hot mess in every way medically, my body kicks ass at making pesky new white warrior blood cells. Of course my own body betrays me with white supremacy (jokes, don’t cancel me).

So what does this mean?

Basically the new antibodies my system custom created took millions of tiny bites out of Frank leaving him utterly destroyed.

After the signs of rejection were identified via bloodwork, I was admitted to Toronto General Hospital as inpatient and scheduled for a biopsy. Three cores were removed from my kidney.

It took a couple days of analyzing but it was revealed that it was as severe of a case of antibody rejection as can get. Frank is palliative.

Ordinarily this would just be a simple matter of restoring veins access via a AV fistula or Cv tunneled PICC line.

The thing about Angie Knowlton is that she is a walking medical disaster. One of the challenges I faced while in dialysis before Frank was veinous access.

Due to diabetes and cardiovascular issues inherited at birth my veins are garbage. Stenosis (hardening via calcium), poor vascular stability etc. made creating and maintaining access a dodgey endeavor. So much so I was “offered” MAID several times by specialists who believed a quick end would be kinder then the slow death that comes with untreated ESRD.

I of course patently disagree, but I’m only human and can only maintain motivation so long in the face of such callous defeatism.

One of the hurtles to finding a kidney donor- living or not; are your individual antibodies. Each person creates their own Batman-like utility belt of cellular defense. Some people have zero antibodies. Worst case scenario is 💯 antibodies. Guess where I fall?

Before Frank I was between 92-96% antibodies.

After Frank: 100%.

This one score that you don’t want to be perfect.

What does that mean in terms of odds of finding a match?

I have approximately 1 in 650, 000 odds in finding a Canadian match. Approx 65 potential kidneys across Canada.

On top of that, I’m on a clock. The average range of life expectancy without dialysis varies. From a couple of weeks to a few (maybe three at best) months.

There are a few more barriers and complications that I will explain as I post more but these are the most relevant highlights.

I will be posting frequently and about all kinds of topics. See this weekends spicy and introspective topics below. I invite you to pop over and read and share to your hearts content. I appreciate you walking this journey with me.

Upcoming blogs:

- “Doulaing Death: meditations on mortality”

- “You gotta be Kidney-ing me- laughing through the shit show “

- “Spilling the pee: kidney disease smut and gross edition “

I want to thank everyone for the outpouring of love and support. I’m truly greatfulbeyond words for your kindness and friendship. Co.e what may, I have no regrets about the lessons I’ve learned. My only real regrets lay in loosing touch with people I loved and not learning to be more flexible much earlier. I ask you to be patience with me as I begin my farewell tour (gotta be a bit dramatic one last time guys). I am hoping to reconnect with many loved ones to acknowledge how grateful I am for all of you. I've been fortunate to meet some amazing people and make remarkable friends. I love you all.

No matter what comes, thank you for putting up with me, it takes a village to raise an Angie 😆