Received some bad news....

We received some bad news regarding Joacim's potential as a donor.  Essentially, his glucose numbers didn't budge from 3 months ago.  Mayo has also determined that the antibodies I have against his are too high to consider him a suitable direct donor to me, which we kind of already knew, but I still had hopes that they'd work a miracle here but I guess not.  At this point I'm not even sure he's a viable candidate to be a donor to anyone, which means I'm not sure if he'll be able to be in the paired exchange program as my donor.  This is kind of a big freaking deal, ad I'm not sure how to deal with it all.

I have had a few people calling in to donate on my behalf so the donor team will focus on those people first to see if they'll be a match.  In order to maintain privacy, I'm not going to reveal any details about these people unless they read this and give me permission to do so :)  I will say that I've been in recent contact with one of them, and it looks like things are moving forward.  It feels like this process is taking a really long time, but I'm honestly not sure how long it's supposed to take, so I'm trying my hardest to be patient, but it's clearly not easy for me.  I'm in several transplant/dialysis related kidney groups on Facebook, and I see so many people who seem to know they have a match within days, and it frustrates me because I don't have that.  At the same time, I also believe that Mayo is one of the best transplant centers, and that they're working to ensure the best outcome for me.

I clearly need to blog more or I'll never get a new kidney.  I need to be constantly in people's faces, talking about donation.  This truly is the best way for me to get a new kidney, but it's hard....hard to find time and focus in order to get my message across to as many people as possible.  Sometimes I don't think I have it in me, but then I realize how far I've come and that I deserve to have a happy ending.

Whew.....thankful for Christmas break....

I went back to work the Monday after Thanksgiving, and since then it's been an absolute whirlwind.  Work has been very busy since I came back, which is great.  It's good to feel missed, but I'm kinda worn out and am ready for a little break again.  Life after work has been....well....lacking lately.  I've been stressing about the holidays and how empty it all feels this year.  I've done the decorating, the Christmas carol-listening, but it doesn't seem to be of much use....I'm just not into it this year.  Maybe part of it's due to going on dialysis...somewhere deep inside that's affecting things.  There's also absolutely zero snow here, and I seriously thought that it was nearly guaranteed to have a white Christmas here in Minnesota.  I'm calling this year the Year of the Christmas Fail.

It also feels like there's not much to my life other than work and dialysis right now.  Here's what a typical day looks like:

• I wake up usually during the last drain of my cycle because it's pretty damn painful (think labor contraction for my mom friends).  I've already missed helping Izzy get ready for school...some days she doesn't even say good-bye because she assumes I'm asleep, or not able to say goodbye because I'm still hooked up.  I think the machine, in general, freaks her out a teeny bit, and she pretty much stays away from it, and me when I'm on it.  
• After she and Joacim are gone, I get ready and go to work, where I'll spend the day sitting down in various meetings (both internal and customer) and eating.  As the days goes, I'll swell, and it's especially bad on work days because I'm usually sitting the entire day (either at my desk, in a meeting or in my car).  
• Eventually I get home, and I'm thinking about what I have going on the next day in order to figure out what's the latest time I need to get on the machine in order to be finished for the next day's appointments.  I also need to figure out which bags to use for the night based off of my fluid gain during the day.  The last couple of weeks this has been more difficult because I'm running low on the green bags (I usually use 2/night), so I've had to get creative with my remaining supply until the next delivery (which was on Christmas Eve).
• There's also homework with Izzy, scrambling to figure out what to feed my family, and doing the dishes (ALWAYS dishes).
• And then there's a shower and off to bed.

Pretty exciting, right?  For now, I prefer to stay connected to the machine once I initially connect.  This, of course, forces me into a much more rigid schedule (which I'm complaining about) but I'm nervous about infection, and the more times I connect/disconnect, the more opportunities there are for screw ups and infection, so I stay connected.  This isn't going to work much longer, as the demands of life will start to take over a bit, so I'll have to do lots of practicing over Christmas break in order to be ready for it when it's needed.  There will come a day soon where I won't get on the machine early enough, and I'll have a super-early meeting the next day.  I'll have to bypass the normal run, and figure out how to make it up later in the day manually.  I'm also going to practice connecting, doing the initial drain and first fill, and then disconnecting in order to get a few more things done around the house (the machine is actually running during this time, but I'm in a dwell, so all it's doing is counting down until it's time to drain).  I'l have to make sure I get re-connected to the machine before the drain cycle starts, but that should be doable.

I know that PD is much more flexible than other options but I'm not fully taking advantage of it yet.  I know I will in time, but for now, it's all hard to figure out how to make all of the pieces of this puzzle fit together in the way that benefits everyone/everything.

So far I think PD is doing a great job of clearing things out.  I have a lot more energy, I'm no longer regularly nauseous (sometimes still, but not nearly to the extent before) and I'm not out of breath walking up the stairs every time.  My labs are looking really good too!  I started doing yoga again and I'm thrilled, but I'm pretty disappointed about all of the strength and flexibility that I lost.  I was SUPER nervous on my first forward fold because I was afraid I'd feel the catheter, but it didn't bother me at all.  The hose outside DID bother me, as I'm not exactly sure where to put it all.  Sometimes I literally tuck it into the waist of my pants.  Other times I coil it and tape it to my abdomen, but I hate doing this because the tape forms this CRAZY bond with my skin and it hurts to pull it off (plus I'm always sticky on my side now because the adhesive stays on the skin instead of getting pulled off with the tape).  I'm definitely nervous about how to fit yoga back in to my life now, as I know that I need to do it with some frequency in order to see the benefits.

Ahhhhhh....so many moving parts.....