Last night was the worst night ever. I know, that seems like hyperbole, it’s not. (In a side note I’ve always wanted to be able to use the word “hyperbole”!)

10:30 Hookup. No worries, it the weekend and I’ve got no morning plans. I do my hook up routine and settle  in for a movie before I go to  sleep. I like to stay up for the first exchange just to make sure nothing goes wrong.

11:00 Alarm. Low drain volume. I check. It’s too low to bypass…about 500ML short of my low volume allowance. I expected this. I didn’t do an exchange during the day. I press go and let it try for more.

11:20 Alarm. Low drain volume, again. I switch positions and press go.

11:40 Alarm. Low drain volume, still. I check the volume. Sonofa, it has increased by maybe 60ML. I stand and start dancing around. I know, seems weird. I find I like the dancing more than twisting and shifting without purpose.

12:10 Alarm. Ok, this is  ridiculous. I lie back down in a new position and cross my fingers.

12:30 Alarm. Check patient line. This is new. Alright, I straighten the tubbing and lay back down. At least it’s not low drain volume.

12:35 Alarm. Check patient line. Yeah, it’s not blocked. Shut up machine.

12:40 Alarm. You’ve got to be kidding me! This goes on until about 1:00am. I suck it up and call Baxter’s 24-hr help line. With customer service’s help I find that while dancing or getting into bed thereafter, I knocked the clamp on the patient line closed. During my embarrassment I also notice 4 good-sized clumps  of fibrin in my patient line. Now I also know why my drain volume is low. The customer service guy tells me to call me PD nurse since my issue is medical. The bonus is that my volume actually went down, it now reads 1250ML instead of 1260ML.

I hate calling the nurse on call. I feel silly and it’s late and I’m more than likely waking her, so I decide rather quickly to go ahead and call her.

We discuss the fibrin and low initial drain volume. I make sure it’s ok to go ahead and bypass with so little out. I ask some more questions about what to do if I keep alarming through the night. She tells me that if I keep having problems, depending on how far I got in to my program that I can also do a manual exchange first thing in the morning.  I will also be stopping by the hospital Monday to pick up some heparin and syringes. Joy.

The machine alarms a few more times. I got the ok to bypass, so I think I’ll be alright through the night.

Alarms. I don’t know what time it is. I don’t care. I wake up this morning, feeling more tired and crappier than usual, to overnight numbers that are abysmal. Not only was my total ultra fill 47ML, but my last fill is only 1386ML. The bag is empty. I turn off the alarm and decide I can have Baxter coach me getting off the machine properly after I’ve had more/real sleep. It keeps going off every 20 minutes or so.

I suck it up and call Baxter again. The customer service guy guides me through ending my program, judgement free. I am free! And I feel horrible!

I need to eat before I start the manual exchange I need desperately to feel better. Then I can nap…all day.


Tell me about it

I know it seems a little dramatic to keep focussing on that day, February 24, 2012, but its the day my life changed. It’s the only time in my life with all seriousness I can say, “I almost died”.

I find it crazy and surreal. I consider that nearly a year before I was fighting with the monster in my head. Fighting against despair. And then, as I saw the light at the end of the tunnel, I was suddenly fighting for my life. With my body. It betrayed me.

I was thinking the other day how I’ve maybe changed. I know I take more responsibility for my nutrition and for any choices that keep me from or make me feel crappy in a given day.

While I still slack with a workout, I do at least one exercise a day. It seems small, but I think it’s helping. It’s a plank for 60 seconds. They’re hard, trust me. I always describe it as the top of a push-up. Even when I’m exhausted, I do one for at least 30-60 seconds. See, I miss yoga. I’ve slacked on my practice a while back and with the fluid in my abdomen, it seems harder to get  back in to. My stomach won’t condense. My forword folds lack form and I can’t get comfortable in child’s pose. So, I’ve started small.

Any change is super slow. But I know I’m starting to have a waist again and my arms are taking up less room in sleeves. My cardio leaves a lot to be desired but I need to do 30  minutes 3x per week. Starting today.

I know I will have to lose weight for the transplant. I’m thinking about 50 lbs. At least I know that’s my goal weight. So, I’m also trying to follow a high protein, high fiber, low phosphorous diet.

Its hit or miss and fortunately, I have very few restrictions if any. I am the anti-kidney patient patient. Fortunately all my labs are good and my general nutrition is good. Now I just have to figure out how to adjust it so I can lose weight.

I don’t typically talk about this stuff. I feel like if I share my diet and workout, I’ll stop. So I’m taking a chance on you.

Here we go.