I got my lab results on Friday. My kidney function is down to 32% (from 37-38% in January), which is discouraging. It's the single largest drop in function for any testing period in the last four years, and it probably indicates that things are moving more rapidly now.
Which is not entirely surprising, given how generally crappy I've been feeling, but it still sucks to see it in black and white. I'm still officially in Stage 3 of kidney failure -- 30% is the dividing line between stages 3 and 4 -- and most patients don't need dialysis or transplantation until they get down around 20%. This disease does not follow a steady progression, but if it did, that would probably mean I'm looking at 2 years or so.
Right now I'm thanking my stars that I loaded up on disability insurance when I did...
Monday, June 29, 2009
Tuesday, June 23, 2009
SAVE THE DATE!
We have finally secured a date for a PKD fundraising event to be held at the Players Club of Swarthmore this fall. Mark your calendars for Friday, October 2 for silent auction, cabaret performance, raffle baskets, and lots of other hijinx.
Also, if you're local and out running errands tomorrow morning, swing by the Swarthmore Co-Op and sample some goodies from the Sweet Pleasures product line (including some new offerings!). I'll be there offering tastings from 10am until 1pm, or while supplies last.
Sunday, I plan to be in a coma.
Smoochies!
Also, if you're local and out running errands tomorrow morning, swing by the Swarthmore Co-Op and sample some goodies from the Sweet Pleasures product line (including some new offerings!). I'll be there offering tastings from 10am until 1pm, or while supplies last.
Sunday, I plan to be in a coma.
Smoochies!
And How Was Your Morning?
I spent the morning holding Quinlan's hand while a doctor we had just met removed part of his right big toenail.
(Pause while everyone winces......)
And it reminded me of the time I stayed home with Quin one Monday morning over two years ago (because his tummy was hurting and he'd vomited a bit and he was in constant pain), and his eyes were the same then as they were this morning as the doctor administered the local: I know you can't stop it, they beseeched, but please, Mommy, MAKE IT GO AWAY.
And I remember how that Monday we went to the pediatrician who didn't think it was appendicitis, but wanted us to try some suppositories in case he was backed up. And I remember how the suppositories didn't do jack, and how by 4PM I was asking the pediatrician which emergency room I should take him to.
I remember being whisked through triage at CHOP around dinnertime, and standing baffled in the ER hallway being told that the blood work showed pancreatitis -- an ailment usually affecting heavy drinkers, not ten-year-old boys.
I remember wheeling Quin down to ultrasound on Tuesday so the doctors could rule out any abnormality of the bile duct or gall bladder. And I remember knowing with absolute certainty even before the technician touched the ultrasound wand that we were going to find cysts in his kidneys.
I remember bawling my eyes out in the hallway outside Quin's room when the doctor confirmed the PKD diagnosis, even though I'd already seen the cysts with my own two eyes.
And I remember sleeping on the thin padded bench in his hospital room the next three nights while he received IV fluids, as the only treatment for pancreatitis is complete bowel rest. And at some point during those five days, I ripped a cuticle, which became infected. And by the time I sought treatment a month later, the infection was in my nailbed and unresponsive to antibiotics.
So I went and allowed some doctor I had just met to remove part of my right index fingernail. Which didn't work, entirely, so a month later I went and allowed him to do it again.
I hope first time's the charm for Quin.
(Pause while everyone winces......)
And it reminded me of the time I stayed home with Quin one Monday morning over two years ago (because his tummy was hurting and he'd vomited a bit and he was in constant pain), and his eyes were the same then as they were this morning as the doctor administered the local: I know you can't stop it, they beseeched, but please, Mommy, MAKE IT GO AWAY.
And I remember how that Monday we went to the pediatrician who didn't think it was appendicitis, but wanted us to try some suppositories in case he was backed up. And I remember how the suppositories didn't do jack, and how by 4PM I was asking the pediatrician which emergency room I should take him to.
I remember being whisked through triage at CHOP around dinnertime, and standing baffled in the ER hallway being told that the blood work showed pancreatitis -- an ailment usually affecting heavy drinkers, not ten-year-old boys.
I remember wheeling Quin down to ultrasound on Tuesday so the doctors could rule out any abnormality of the bile duct or gall bladder. And I remember knowing with absolute certainty even before the technician touched the ultrasound wand that we were going to find cysts in his kidneys.
I remember bawling my eyes out in the hallway outside Quin's room when the doctor confirmed the PKD diagnosis, even though I'd already seen the cysts with my own two eyes.
And I remember sleeping on the thin padded bench in his hospital room the next three nights while he received IV fluids, as the only treatment for pancreatitis is complete bowel rest. And at some point during those five days, I ripped a cuticle, which became infected. And by the time I sought treatment a month later, the infection was in my nailbed and unresponsive to antibiotics.
So I went and allowed some doctor I had just met to remove part of my right index fingernail. Which didn't work, entirely, so a month later I went and allowed him to do it again.
I hope first time's the charm for Quin.
Friday, June 19, 2009
Losing My Religion
I just don't think I can do it all anymore. Bone-deep fatigue has taken up permanent residence and I spend afternoons at work trying to trick my brain to wake up when all I want to do is put my head on my desk. I spend evenings trying to fulfill my baking commitments when what I really want to do is lie down at 7:30PM and not move. I'm not experiencing nausea yet, but I am often a bit light-headed and I have some pain in my kidneys virtually every day. Last night I hit the wall at 10PM after three hours of baking, and when I lay down the room was spinning.
None of this is a surprise. With my kidneys failing, toxins are building up in my bloodstream and oxygen is not being transported effectively to my muscles and brain. But because of the incremental nature of the disease, it's like slow torture. Some days, maybe two out of seven, I feel pretty good and have a normal day. I clean house and make lists and plan new projects. Most days, though, I am very grateful that I have a private office at work so no one can see how little work I'm getting done.
It hasn't been all bad the last few weeks -- some major work stress has been resolved (for the moment), Garrick graduated from elementary school, and we had a great yard sale (raising $159 for PKD research) -- but my recovery times seem to be getting longer and longer and my physical stamina is definitely waning. I'm going in for blood work next week to see how far things have progressed. And I'm trying not to listen to the voice in my head that wishes that we could just get this over with. I'm not sick enough for dialysis or a transplant, and until I am, I'm just going to be exhausted and not have the energy to do the things I want to do.
I want it over with, already.
None of this is a surprise. With my kidneys failing, toxins are building up in my bloodstream and oxygen is not being transported effectively to my muscles and brain. But because of the incremental nature of the disease, it's like slow torture. Some days, maybe two out of seven, I feel pretty good and have a normal day. I clean house and make lists and plan new projects. Most days, though, I am very grateful that I have a private office at work so no one can see how little work I'm getting done.
It hasn't been all bad the last few weeks -- some major work stress has been resolved (for the moment), Garrick graduated from elementary school, and we had a great yard sale (raising $159 for PKD research) -- but my recovery times seem to be getting longer and longer and my physical stamina is definitely waning. I'm going in for blood work next week to see how far things have progressed. And I'm trying not to listen to the voice in my head that wishes that we could just get this over with. I'm not sick enough for dialysis or a transplant, and until I am, I'm just going to be exhausted and not have the energy to do the things I want to do.
I want it over with, already.
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