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.

Playing the waiting game

We're one week out from Day 1.

V went to the hospital today.

The doctor who ordered the labs that came back last week (the Bad News) told V she should make an appointment with her regular doctor. She did but they scheduled it two weeks out. After spending a few hours together yesterday we insisted that she go see her doctor today.

She was in with that doctor for about five minutes before she was told to get herself to the hospital asap.

She checked in to the er half an hour later. Then waited. And waited. And waited.

Why a nephrologist couldn't find their way downstairs for a consultation is beyond me.

They finally got her set up in a bed around midnight, right his after her arrival. I hate that about hospitals. Always have.

She's sleeping now, thank goodness.  She'll be admitted at some point. There's some speculation that she won't need dialysis right away, which is probably a good sign. I'm skeptical but we'll see.

In the meantime I'm wide awake at 2am. Can't eat, can't sleep, can't do much of anything but wait and worry.

On a side note we planted the cherry tree and the roses V helped us pick out. Is it morbid for me to say I hope she is able to come visit to see the rose she picked in bloom and eat some of the cherries? The cherry tree probably won't fruit for a few years but the rose should bloom this summer. It is morbid. But, you know, I'm thinking it anyway.

Day 6

Feeling more normal today. I have my appetite back which is nice. Why am I feeling less devastated?

1) The offers for kidneys have started to trickle in. That is unbelievably comforting. UC Davis, which is where the transplant will happen if V qualifies, participates in a nifty program. If your donor isn't a suitable match then their kidney is matched to someone else whose dinner wasn't a suitable match and vice versa. Amazing that no one thought of this sooner.

2) My husband finally called V to talk about what's going on. It's going to be VERY DIFFICULT for me to learn that he will have to process this is his own way. I freely admit I was angry and hurt that it took him so long to pick up the phone. Now that he's done it I understand he needed to be in the right place in his own head to be the strong, endlessly optimistic man she loves and needs.  His optimism is a necessary balance to my pragmatism. He is the warm, comforting, unfailingly positive half. I am the realistic, down to business, face the facts, get this stuff done half. We're both necessary, too each other and to V.

I love them both very much.

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.

electric pineapples are peachy keen!!

three days ago i discovered a nail/nail art blog out of Turkey that absolutely tickled me.  i saw a mani there that i had to get on my own nails asap.  here's my version of emerald sparkled's pinkberry mani:

i used mostly china glaze products - my first time with this brand. ulta was having a deal: buy two polishes and get a base or top coat free.  yay!  free is my favorite price!!!  index and pinky fingers are peachy keen with splotches of electric pineapple and sally hansen xtreme white on.  middle finger is electric pineapple with white on dots made with a dotting tool.  ring finger is white on with a swirl of peachy keen painted on with a detail brush.my thumb, which didn't photograph well, is electric pineapple with a peachy keen swirl on a white out circle.  so fun!

it wasn't as hard as it looks! one of the things i love about nail polish as a medium is how the lacquer relaxes onto the nail after it's applied.  everything smooths out and softens and many oopses just disappear.  :)  i'm excited to wear this one to work today!!! 

on a side note...i've never eaten at pinkberry before.  one opened about two miles away but it's always jam packed. i mean absolutely jam packed.  we've got a big spoon about three blocks away so our frozen yogurt dollars go there.  maybe i should do a frozen yogurt mani based on what i always get there: tangy original with blueberries, blackberries and strawberries with chopped almonds.  yummmm!  stay tuned................