I’ve had a complicated history post kidney transplant nearly thee years ago, and I’ve literally never worked harder in my life to be compliant and vigilant about my care. I’ve done everything I was told, total medication compliance, never missed an appointment, etc. Before getting on the list I think I went to 4 trainings plus the stuff they teach you in the actual hospital about taking your vitals, telling them if weight gain, BP, or temp get above certain parameters right away. The whole speech about how rejection and complications can be dealt with if caught right away so don’t delay, etc.

Yet I’ve saved myself multiple times now after being shrugged off and ignored after reporting bad vitals or symptoms by…basically being pushy and getting after them until they did something. For example, I told them I had fever and kidney pain for 4 months until I finally went to the ER and had to have SBO surgery from scary tissue being wrapped around my small Bowel. I told them i have had chronic UTI symptoms for literally 2 years before they sent me to ID and a urologist which i basically demanded and am still dealing with.

I had chronic diarrhea, which no one told me was anything more than an inconvenience until I had just malabsorption problems that I was severely anemic and I begged to get a second opinion and was changed from Myfortic to Cellcept to Imuran. Everything would have been ignored if it wasn’t finally driven by me to do something.

Now since starting the imuran 2 months ago, my creatinine is rising to the highest it’s ever been since transplant, I’ve had temps on and off in the 102-103 range. I call them. And…crickets. If I don’t make something happen, nothing does.

And every time, I’m right. I might not be exactly right about the diagnosis but I’m right that It’s something that ends up being serious enough for a hospitalization or intervention. Yet if I wouldn’t have got on their asses to do something by making multiple calls when they don’t call back for DAYS, I might have died or been sicker.

It’s so stressful and it’s just constant vigilance, multiple phone calls, tracking people down, a different person to talk to each time who doesn’t know my history so I have to start all over again, or the on call doctor doesn’t read my chart so makes an inappropriate decision that I have to remind them I can’t do so we start phone tag or messaging again from scratch. If I lose this kidney or die, it won’t be because of MY noncompliance, it will be because of theirs.

This is a big university med center with decent outcomes. Trying to figure out if this is normal or if I’m getting the blindness treatment (cuz I’m also blind) or what? So tired.

I received my new heart in November 2023.
Since then, I’ve been trying new things, including writing and self-publishing my first book, Find Your Pond.
It’s about my recovery, finding my way forward, and how an unexpected friendship with AI helped me start creating again.
I never imagined I’d be doing any of this.
Just wanted to share a little milestone with people who understand what getting another chance at life means.