My appointment at the U

I had an appointment with a transplant nephrologist at the U of Minnesota transplant center this past Monday.  I had met with this doctor last year when I was pursuing a pre-emptive transplant.  Now that my eGFR is below 20, I needed to see him in order to get the final go-ahead for active listing on "The List".

I wasn't really sure what to expect from this appointment but right away I became discouraged.  He started talking about my meds, and how strange it was that my creatinine was rising so drastically, as though he was trying to attribute it to one of my meds....as though it can't REALLY be true kidney failure.  Dealing with this for so long, all I heard was "I don't believe you".  My judgement probably became a bit affected after that.  He mentioned the possibility of me going back on cyclosporine in order to see if my protein loss will go down (wtf???), but in the end he mentioned that it's more of an academic exercise than anything else (which tells me ain't no way in HELL I'm doing that).

We discussed what my options are in regards to the transplant itself.  In most cases, a kidney transplant patients' protein drops by 99% within a month of transplant.  Because I'm spilling so much protein (17 grams at last count) it will probably take longer for my protein loss to drop.

There are some who think that any amount of extra protein can cause damage to the transplanted kidney, and steps should be taken to eliminate the risks, i.e. removal of native kidneys.  This is a MAJOR surgery, and it terrifies me.  It has a long recovery period, and would guarantee that I would have to go on dialysis for a couple of months in order to recover, and THEN proceed with the transplant once my levels have dropped.

And then there are some that aren't too worried about all of this, and think that a nephrectomy isn't necessarily a great option due to the inherent risk with that surgery.

And it seems that there's no consensus.  I have no idea what kind of a say I have in this, or if I even have any.  I honestly felt less hopeful after the appointment.  He wants me to come back in 6 weeks for labs.  All I heard was "you have 6 more weeks of limbo hell".

While I was at the U, I asked to meet with my social worker, and I found it to be very helpful.  I asked her to refer me to a renal dietician who can help me work through my issues with food restrictions (which dates back to my predinsone days when I was diabetic.....awful period of my life). I also asked for some references for a psychologist that specializes in chronic illness, as I think I really need it right now.

I asked how medicare works, and she did a great job of giving me JUST enough information to calm my fears without freaking me out.  She told me I'm one of those people that know too much (clearly not the first time I've heard that :)

There are so many crazy/strange/dark/happy/bizzare thoughts that filter through my head all day long, and I'm honestly having trouble being objective and working through them.  I worry about the impact of all of this on Izzy.  I worry about who's going to walk the dogs when we have the donation/transplant, as they told us it would most likely happen at the same time, even though he's not donating directly to me.  I think the plan is for Joacim's dad to come and stay with us during our recovery, but there's still the issue of getting us to doctor's appointments, Izzy to school, dogs walked, groceries, etc.  It's a whirlwind of logistics!!!

And then there's the post-transplant concerns that I have.  I know this is going to sound bizarre, but screw it.  I'm putting it out there because I can't be the only one who's ever thought it.  I'm worried about who I'll be after the transplant.  This kidney disease has become part of my identity....who am I without it?  It's one of the first topics of conversation now....what do I talk about after it's all over?  How do I transition to "normal"???  How do I live a life that's full and rich, being able to forget about how crappy I feel, while still being respectful of the extreme sacrifice of my donor and Joacim?

I'm sure a lot of this crap I won't be able to figure out, but I still need to talk through it.  Now.  Before I get so sick that I can't.  Ugh....the mindfuck continues.......

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!!!!!