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.

Joacim's donor workup

Joacim had his donor workup last Friday at the U of Minnesota Transplant Center.  As I had already been through a workup last year as a recipient, I was familiar with the testing that he'd go through.  The only thing that really differed was that he had to do a CT of his kidney using contrast dye in order to see if all of the vessels and arteries were working properly.  His transplant coordinator told him that they essentially build a 3-D image of his kidneys where they can move them into any viewing angle they need.  It actually sounds really cool, I just wish we could see them too!

Here's the patient filling out one of a gazillion forms

Anyway, so far, it looks like Joacim is pretty healthy.  His a1c was high though (well, higher than than they want, which is below 6.0).  A1c measures the average blood glucose control over the past 2-3 months (and he's been on a candy binge lately)   That doesn't necessarily preclude him from being able to donate, it just means that it's something they'll take into account when evaluating him.  His blood pressure is ridiculously fantastic, and he's lost a decent amount of weight in the last year, all of which is great...he just needs to watch his sugars, which is probably one of the hardest things for him to do.  He LOVES candy.  I mean....REALLY LOVES CANDY.  But this week, he's been great.  He's not eating any candy until this Saturday, when he'll then treat himself a little (all in moderation).  He's been very good about the amount of carbs he's been eating all week, going back to hard bread instead of regular bread.   I made pasta the other night and he didn't eat any, opting for something that wasn't so carb laden, so I think that's great!  He's got WAY more willpower than I do!!!!!

I don't know what his labs indicate as I haven't seen those results yet, but so far everything appears positive.  The transplant committee will meet next Monday to review his case, and then make the determination as to whether or not he can donate.  If he can, then they'll run our info through the databases and see if there's a match on the first pass.  If there is, then it's a pretty positive sign that this whole thing will work out.  Of course, this is totally dependent on whether or not he can even donate, and we won't find out anything until sometime next week.  The anticipation is killing me....again, more limbo.  If he can't donate, then I need to start reaching out to people, and I will absolutely hate every minute of it, but I'll do it.

In a weird way, part of me is almost relieved that Joacim can't donate to me directly.  There are a ton of emotions/thoughts associated with this whole process, and to have that in my home every single day sounds like a lot of pressure.  That's not to say that doing a paired donation is any less pressure, but it's just different.  I'm finding it so much harder to articulate the thoughts that I have now.  I think I need to just sit down and write more...I spend a lot of time thinking about this (nearly every second of the day :) and my thoughts go into all of the dark places no one wants to go.

Please everyone.....please send positive vibes that he can donate!!!!!