Rough few days....

I feel pretty rough right now.  The last few days have been a struggle for me, physically.  I'm still riding my high, but days like I've had recently ground me quickly.

I've spent a stupid amount of time the last 3 days sitting.  Sitting in meetings. Sitting in my car.  Sitting in my desk.  Sitting at lunch.  This job seems to entail a LOT of sitting, and it's killing me, literally.  Days like these I gain wait.  I feel sluggish.  I feel awful.

I've been struggling with diarrhea (tmi, I know, but deal with it), so that's no picnic.  All of the swelling is limiting my range of motion, and I'm cramping a hell of a lot.  I had one in a meeting yesterday, and it took everything in my will to not cry.  I'm tired of putting on a good face at work.

I went to yoga, FINALLY, tonight. This was the first night that I thought I could actually make i though the class.  I did, but just barely.  There's such  drastic difference between when I go to yoga in the morning and when I go after work.  In the morning, I'm full of energy, an feel graceful and beautiful and strong.  In the evening after a long day at work, I feel like an elephant crammed into spandex doing yoga on a balance beam.  It's not pretty.

I got home, took a shower, and this overwhelming exhaustion game over me. I even asked Joacim to brush my teeth for me, but he didn't take me up on it.  Then I started to feel REALLY bad.   My blood pressure is okay, but my heart rate is up around 100, resting, and it's normally around 70 (not much better :(.  My heart rate freaks me out, especially when I compare it to Adam's.

His lowest measurement was 37bpm.  Holy hell, that's awesome.  Granted, he nearly rode enough miles on his bike during the month of June to go to New Orleans, but still :)

I have such an uphill climb to get to where I want to be physically, and it's daunting.  I can tell that this is getting harder.  My sleep is not as great as it was in the beginning, and it's getting REALLY hard to wake up, even though I'm in this bed 9.5 hours a day.  I have no idea how much is enough sleep, as I haven't reached that point yet.

So.....when's the big day?

"When's the date?"  This is a question I get asked daily.  Totally makes sense since I got THE BEST NEWS EVER a week ago, but unfortunately, I don't have an answer to THIS question....yet.

The last time I was at Mayo was back in October to get evaluated for transplant.  This was BEFORE I  started dialysis and I was pretty sick at that time.  Since then, all of my care has been through Davita, so Mayo has no idea if I'm better or worse because they haven't seen any labs.  I've been in contact with my donor nurse coordinator (Tammy), and she's now in contact with my amazing PD nurse, Amy.  Together, these two ladies will do whatever they can to keep this process going.

I had my regularly scheduled nephrologist appointment on Monday, which was great because Tammy was able to talk with Amy before and get lab orders created.  I did a random urine collection at my appointment, and they did a blood draw as well.  These will be processed at Davita, and the results sent to Mayo.  Amy also sent my last 4 months of labs to Mayo as well.  The only thing we didn't already have was microalbuminuria, which is what the blood draw and urine collection will be used to measure.

Once Tammy has everything she needs, she'll work with the nephrologists on the transplant team to determine a course of action.  The biggest concern right now for me is my albumin.  It's at 1.9 right now, which is better than October when it was 1.6.  Unfortunately, normal people have an albumin that's 4.0 or higher, and I'm pretty far away from that.

I've been working on bringing my albumin up for years, but it doesn't budge much because no matter how much protein I eat, I pee most of it out.  Oddly enough, right now, my biggest hurdle to getting a new kidney is trying to get my existing ones to stop completely.  Often times, people on dialysis stop urinating completely, but I'm still going, which means my kidneys are too.  And while my kidneys are still working, they're still spilling protein.  The question is how much protein.

The reason all of this is important is primarily because of the FSGS Protcol that I need to follow.  Because my disease has a higher chance of recurrence after transplant (meaning it can come back in the new kidney and we start this whole rodeo all over again), I have a medical protocol to follow to help ensure I'm in the best condition possible to prevent recurrence.  That protcol entails taking one dose of a drug called Rituximab (or Rituxan), waiting 2 weeks, taking another dose (this is by IV, btw), and then waiting 2-3 months to see if there's been any reduction in B-cells.  If there has, then I do plasmapheresis (basically dialysis) to clean out the cells from my blood.  

But I can't do ANY of this until my albumin goes up.  Based off of my October labs, this makes sense, because I could go through the process of getting the Rituximab, but I'd just pee it all out.  So, here's what the future looks like:

1. get labs done at Davita
2. wait
3. hope
4. work with Mayo to determine course of action to get me healthy enough for FSGS Protocol
5. get healthy enough
6. Rituximab
7. wait
8. Rituximab
9. wait for what seems like an eternity
10. hope like hell that it worked
11. plasmapheresis
12. GET ADAM'S KIDNEY!!!!

So, what are some of the options that could be presented to me once Mayo gets all of my labs? Honestly, I'm not sure, but I've got a couple of possible scenarios (this is all me guessing by my own research, btw):

1. albumin infusions - seems least effective because if I'm still losing a lot of protein through my urine, then I'll just pee out the albumin too
2. possibly change to hemo as there is some extra protein loss daily from the PD fluid - this also seems unlikely based off conversations with my dialysis nephrologist, but not sure how unlikely
3. take a bunch of NSAIDs to knock 'em out
4. cut of blood supply to kidneys (via radiology) so they essentially starve and die. This was described to me as potentially painful, as it's like giving your kidney's a heart attack.  I haven't researched this too much yet though

Overall, it's a bit frustrating because I don't have answers, yet it's not NEARLY as frustrating as not having a donor.  Having Adam approved opened up the door to having these conversations now.  I'm frustrated because I'm not patient, and it feels like I've waited forever, but I can wait a few more months if I know it increases my chance of success.

And I still can't wipe this smile from my face.