I think I overdid it today.

Okay...I don't think I overdid it....I KNOW I did.

Joacim and I took Izzy to ValleyFair today.  For anyone that doesn't know what that is, here's a link to their website.  It's a local amusement park a short drive south of us, and it's pretty great.  We try to go at least once a year, and we had planned on taking my family when they were here visiting in July but couldn't because it rained.  Since I'm off now and school is starting next week, this seemed like a great time to go.

The weather was pretty perfect....not too warm, not too cold..mostly cloudy (which is great because baking in the sun isn't what I had in mind today :).  Everything was great, except for my toxin-filled body.  I just didn't have any energy today, and all of that walking really took a toll on me.  Have you ever had that feeling of sheer exhaustion after a lot of physical activity?  Well, that's how I feel when I get out of bed in the morning right now, so it does't take much physical activity for me to feel wasted, and walking around in an amusement park is a LOT of physical activity, and it was just too much.  Apparently I can handle short bouts of activity (like yoga or bike riding) but an entire day of walking is too much.

I was pretty frustrated today.  I hate telling Izzy that we need to go home because I don't feel well.  It just is so unfair to her.  And I realized that Joacim and I are sometimes just no fun.  I used to LOVE roller coasters...I still think I do, but the damn kiddy rides that go round and round send our stomachs flipping and it's hard to recover.  All it took was one of those to put me out of roller-coaster riding form for the day, and Joacim wasn't a whole lot better off.

I used to be so fun!  I used to have fun!  Now, I'm a puddle.  A very frustrated, very tired, very sore puddle.  As soon as we got home this afternoon, I headed straight for the couch and didn't move.  I went to bed at 9 just so I could prop my feet up.  I'm hooked up and dwelling right now, still feeling like a beached whale.  Luckily, the program changes worked last night with no alarms, and I was able to pull off a good amount of fluid too.  I did wake up this morning feeling like some of my brain fog has lifted, so hopefully a few more days of better dialysis will help even more.

I've planned another day of a lot of walking tomorrow (school shopping) so I hope I recover while I'm sleeping.

Mayo update and dialysis change

I had a follow-up appointment at Mayo yesterday to draw labs.  The original plan was to wait 30 days after the 2nd infusion, but I guess this is where it pays to be an "interesting patient"...it leaves doctor's curious and anxious to see labs :)  I also got a chance to see the doctor again which was great.  All of my labs hasn't been processed in time for my afternoon appointment (specifically my B cells which we're hoping are at 0), but we did get to see some of them, and those weren't all that great.  My albumin is steady at 2.6 (which is great for me) but it's unchanged from the last draw, and I got the feeling that he expected it to be higher.  We talked again about how PD wasn't the best option for someone like me with low albumin, but he completely understands why I chose it and he doesn't intend to change it (whew!).  My creatinine is also quite high at 16.7, up from 13.7 a month ago.  And my hemoglobin is at 9.5 (down from 10.3).  And my BUN is at 70.  Even though the numbers aren't very good, we did set a tentative transplant date of November 3rd.  I had been hoping for October 15, because that's the stat of fall break here in Minnesota, but the doctor is set on 3 months after the first infusion.  The date of November 3rd worked out quite well for me, actually, as it will be exactly 1 year that I've been on dialysis.  What a great anniversary gift...a NEW KIDNEY!!!!!!

I've been on Short Term Disability for a little over a week now, and I'm really glad I did it.  I've been able to go to yoga regularly, start cooking more meals and checking things off my list.  But what I can't explain is the exhaustion I've been feeling. I've been trying to keep on a fairly regular schedule since I started, going to bed at the same time as Joacim and Izzy and getting up "early" in the morning.  I've been getting enough hours of sleep, working out and eating better, and yet I'm still exhausted.  I've been feeling crappy lately, very reminiscent of how I felt before I started dialysis.  My muscles never seem to recover from their workouts, and my brain is foggier than normal.

I had my monthly appointment with my dialysis nephrologist today and we talked about my numbers.  My Mayo doctor had actually called her yesterday (which I think is awesome) and were able to talk about me and put a game plan together to get/keep me as healthy as possible for transplant.  The numbers that I'm working with right now are terrible...my dialysis nephrologist said that it's as if I'm not even doing dialysis right now, and that totally explains why i've been feeling so crappy.  My urine output has drastically declined, and I think it will always surprise me how much of an impact that has.

All of this has led to a change in my PD "prescription".  Instead of 4 cycles totally 6600 ml of solution used, my new program will have 5 cycles for a total of 11,000ml of solution, so my fills have gone from ~1600mL to 2000mL.  That might not seem like a lot, but I'm in my first dwell right now of the new program, and it's REALLY hard to breathe.  I mean...I'm like a beached whale stuffed in a straightjacket.  This new program will also require me to change from 5L bags that I typically use to 6L bags (which I didn't even know they made ;).  Until my new shipment arrives next Thursday, I'll use 3 bags each night to get through, which will also help me reduce the supply I have in the basement.  These changes, although uncomfortable, should immediately start helping the toxin removal, which will make me feel a whole lot better.  I have my next adequacy test next Monday to see if it's working.  Here's my new 3-bag setup:

And I just checked my labs at Mayo and B cells are zero!!!!!

WOOOHOOOOOOOO!  That EXACTLY what we want to see!!!!  Great news!!!!  That makes me feel MUCH better!!!!  Okay, I'm off to see if this beached whale can get some sleep. :)