Back at square one

Sadly, we found out last week that my potential donor won't be able to donate due to issues with her own kidneys.  Thankfully the issues aren't life-threatening for Buffy, but it has eliminated her from being a kidney donor to me.  So what does that mean for me?

It means I'm back at square one.

This is tough because I know that Buffy reads this, and I don't want her to feel bad about anything at all.  What she offered to do for me is incredible, and I will never be able to thank her enough for it.  I am so thankful that we were all able to have dinner while she and her family were up here for Buffy's evaluation

But at the same time, I can't put in to words exactly how I feel right now.  I feel a bit hopeless, to be honest.  I feel like a ship adrift.  I feel like I'm slugging through every day, waiting for a bit of good news, but nothing's come my way so far.  It's depressing, and it's hard to imagine waking up feeling like this every day for the foreseeable future.

The way I see it, I'm a minimum of 6 more months out from a transplant, and that's being wildly optimistic.  Think about it....first, someone needs to actually call Mayo on my behalf.  Then there's the blood tests, and if that goes well, a visit to Mayo.  If all that checks out, then there's schedules to work with.  All in all, it could easily take 6 months, and that was if I had the next donor lined up (which I DON'T).

I called the donor team at Mayo last week to see if they could help me figure out what's next.  To say that they aren't very reassuring to me is an understatement.  Here's what I know right now:

• 10 people have called on my behalf overall
• 3 have been ruled out due to medical reasons
• 2 would be a positive crossmatch with me
• one was sent a kit and never returned it
• 2 additional donors contacted Mayo through the online questionnaire
• both were not responded to by Mayo, so they're following-up

All of that is depressing.  Mayo is telling me to ask my network, and this is something that I find very hard to do.  I post on this blog, and I post it to Facebook and Twitter, hoping that someone will read it and feel a call to help me.  I don't want to create another FB page solely for the purpose of finding me  a kidney...it's just another thing to manage right now.  I just have to hope that people will take the time to read my posts, and that something I say resonates with them.

I am thankful that I'm coping well with dialysis.  A part of me hesitates at this point to put anything positive here lest people think that I'm OK.

Let me reassure everyone that I AM NOT OK.  I CANNOT LIVE LIKE THIS FOREVER.

There...got that out of the way.  I am grateful that I handle dialysis well.  It's been 6 months that I've been on PD so far, and I'm managing it.

I did another adequacy test 2 weeks ago to measure how well dialysis is working for me.  We strive for 1.7, and I'm at 3.09, so that's great.  However, the last adequacy for me was 3.99, so it's dropped a little.  My PD nurse, Amy, says that's likely due to the fact that my urine output has dropped drastically since my last test, and I'm currently functioning at about 3% remaining kidney function.  Hopefully it doesn't drop any further, but I guess we'll see in 3 months when I test it again.

Izzy continues to be a fantastic little helper.  She love helping me do my meds every Sunday (which is great because I hate it) and she likes to be in the room when I'm setting up the cycler at night and tearing it down and emptying everything the next day.  She's incredibly curious, and I'm more than happy to help explain everything to her.

I did suffer from my first bout of sickness the last couple of weeks.  Two weeks ago, I woke up on a Wednesday with my eye matted shut like a sick kitten.  The culprit:  pinkeye.  Who in the hell gets pinkeye at 40, and they're kid is PERFECTLY fine???  THIS lucky girl, that's who.

I hate to tape my eye shut because it was so painful and gross.

The pinkeye eventually turned into a sore throat and cough, and eventually a full-blown sinus infection.  Throw in one night of insomnia (something I struggle with occasionally) on Monday, and I was an absolute wreck.  It couldn't have come at a worse time as Joacim was traveling last week.  I'll admit that I was terrified to leave the house, but it was spring break and I had to drive Izzy to daycare for the day.  That was the scariest 10 minute trip ever.  I felt like I was drugged, but I made it there safely, dropped her off and headed home, where I spent the entire day in bed.  Seriously, this whole thing kicked my ass....I was out of commission for 7 full days, and I wasn't able to work out for over 14 days.  FINALLY, I was able to make it back to yoga, although I haven't been hitting it as hard as before.  I've lost a lot of weight recently (10 pounds) so I'm just trying to be careful with how many calories I burn as I'm having difficulty eating right now.  Nothing tastes like anything.  I have no cravings, and I don't feel hungry at all, so it's something I'll need to keep an eye on.

This week promises to be challenging, with a 2-day trade-show, plus setup tomorrow.  It sounds like a lot of time spent on my feet being social.  Hopefully I can suck it up enough and pull it off.