Day 2

This is the day when I start up the research again. Which of the equally horrible sounding options is currently offering the best result?

Dialysis? Nope. Still just a short term solution, and not a very attractive one. The most restrictive of diets, tubes in and out of the arms or the abdomen, anemia, infection, hours and hours of treatment every week.

Transplant? Better long term prognosis but will she be a candidate? Because not everyone is. And then it's up to 20 pills a day for the life of the new kidney. But not my kidney because high blood pressure eliminates me as a candidate. There are all kinds of feelings that brings up but I don't have time for them right now. Also, V says she doesn't want a transplant. She is TERRIFIED of forgetting to take a dose of the anti-rejection medication.

Someone in the UK grew an itty bitty kidney that was able to produce urine. That's a good start. They implanted it into a rat and it have the rat the equivalent of 5% kidney function. Not so good. But maybe, someday...

UCSF just got fast-tracked for clinical trials of an implantable artificial kidney. Fast track = clinical trials in two years. The time line could work. They need money and publicity.

A whole stinky bouquet of un-lovely flowers picked by someone other than me. Thanks.

Reintroductions

Just about forever ago I started this blog.

I'd written a blog a while before and it had done pretty well. My husband and daughter encouraged me to start a new one and this was it. Problem: nothing compelling to write about. The damn thing didn't even hold my interest so how could it hold anyone else's?

Now I'm back and I've got something compelling to write about.

There are lots of, I'm Sick, My Spouse is Sick, My Parent is Sick and My Kid is Sick blogs. Cancer is a popular topic. So is Alzheimer's. Rare genetic diseases, yep.

I went online looking for a blog I needed to read: My Young Adult Child is Sick and Isn't Going to Get Better. I couldn't find one. Not one. I'm sure there's something out there but I looked pretty hard and couldn't find it. So that's what I'm going to write about for a while.

The purpose here is to:

1) Give me a vehicle to vent. As an INTJ I am disinclined to discuss my feelings. That does not mean I don't have them. They are pretty yucky right now and I'd like to get them out.

2) Broadcast a wide net in which to catch a new kidney for my daughter. And money to pay for the $100k plus PER YEAR that dialysis and anti-rejection medications cost, only some of which is covered by insurance.

3) Raise awareness around ESRD and CKD. These are diseases that primarily affect those with diabetes, old age, bad accidents, etc. Maybe that's why the research to find therapies beyond dialysis and transplant don't get a lot of funding/attention. Those fat, old, unlucky people are gonna die anyway so why bother? Yes, that is how I think most people feel about the thing that is killing my daughter.

4) Leave a cairn or "duck" behind to help out anyone on this trail behind me. It is immensely comforting to see a sign that someone has walked the road you're currently on.

Reasons 2-4 are why this is a blog and not just a diary.

That's all I have to say for now. That and blah, my head sure hurts.

Falling off a cliff.

Day 1 of The Bad News.

So my daughter was born with crappy kidneys. We've know since day 1 that they had an expiration date. Every few years her kidney function would fall off a cliff and then stabilize. There were four big cliffs: age seven, age eleven, and age fourteen. Now, at age twenty three (twenty four in a few weeks) her kidney function has landed on the canyon floor, just like Wile E Coyote. It made the "poof" sound and everything. See the road runner there? He's holding up a sign in the dust cloud that says, "ESRD." End stage renal disease. End stage. End.

The expiration date is now.

Without immediate medical intervention my daughter is going to die.

Day 5

Five days out from the bad news and two things happened that surprised me:

1) One of my employees said enthusiastically, "She can have one of my kidneys!!" She was serious, too. This is the first person who has offered and she did it so matter-of-fact-ly. "I'm not using it! I'm an orgasm donor anyway so I might add well donate an organ while I'm alive and see the benefit." Absolutely blew my mind. If I weren't all cried out for today I would have lost it.

2) I received a phone call from a work acquaintance who said, " Your voice sounded so sad I didn't even think it was you." That's me now. The new me. Sad voice on the other end of the phone.

V told me how exhausted she's been feeling. I think she used the expression, "dead blood syndrome." I don't know if that's a thing or an expression she's made up. It sounds awful. I suggested chlorophyll water as it stimulates red blood cell growth and it's not nephrotoxic It also tastes pretty good. I'll bring her some when I see her next. Thanks #pressedjuicery. Who knew?

We're going to have lunch tomorrow. It will be good too see her with my own eyes.