Tuesday, December 15, 2015

Today is 6-weeks post-transplant

It's been 12 days since my last post.  It's been 42 days since my transplant, and yet here I am, still going to Mayo 3-4 times per week.  I honestly thought I'd be on the road to healing by this point, but a continuous stream of setbacks keeps the future uncertain.

I had plasmapheresis a couple of times last week...the attempt is to slowly keep weaning me down and see how my protein levels change.  I had a session last Thursday, and my protein was around 1600 after that.  I was able to spend 3 solid days at home (yippee for small wins), and went back to Mayo on Monday for plasmapheresis, and it was up to 2300 by then.

I was talking to my doctor about the new side effects that I had been experiencing lately....well, since last Thursday, specifically.  I started to notice some pitting edema in my right leg, which continued to get more and more severe as the weekend wore on.  I ended up wearing my hospital-grade compression stockings 2 days in a row and that did seem to help a lot, but it also felt like it just pushed all of the fluid to my torso, and it was making it very hard to breathe.  My bowels continue to be an issue, and my blood pressure is skyrocketing (~170/100).  I also "felt" the kidney all the time...like there was a bunch of pressure behind it and it was pushing out.  I just generally felt pretty crappy.

When I had my biopsy a couple of weeks ago, they noted that there were a couple of fluid pockets around the kidney at that time, but they were considered small enough that my body would eventually reabsorb them.  After describing my symptoms and seeing my blood pressure readings (167/87 at plasmapheresis yesterday morning), my doctor decided to get an ultrasound done as soon as possible to see what was going on.  He suspected that the fluid pocket was larger, and was putting pressure on both my ureter (drains urine from kidney to bladder) and on the blood vessel that goes down my right leg.  Initially they couldn't get me in until Tuesday afternoon, but my doctor worked his magic again and was able to get me in yesterday afternoon.

It was probably THE LONGEST ultrasound I'd ever had.  The tech was clearly seeing things he didn't expect, but he couldn't tell me anything.  After about 40 minutes he was finished, and left me in the room to consult the doctors.  So I just laid there in that room, alone with nothing but my thoughts.  Eventually he came back and said I was free to go, and I just didn't know what to think.  My doctor eventually called me that evening and told me that they had found exactly what he suspected.  I was honestly relieved because mechanical problems have solutions and fixes, unlike all of the other problems I was having.  The solution was to drain the fluid.  The hope is that, by draining the excess fluid, there will be reduced pressure on the blood vessel and the swelling will resolve itself, as well as the back pressure my kidney is experiencing from the fluid pressure on the ureter.  This should lower my blood pressure eventually as well as hopefully lower my creatinine and protein.  It's going to take a few days to see any actual results though.

So, Joacim and I headed to Mayo bright and early this morning for another procedure.  We went to get labs done at Charleton first, and then headed over to St. Mary's (which I had actually never been to before) to have a drain put in my abdomen.  Awesome, right?  Another tube hanging out of my belly.  Now, they could've just drained the fluid using a needle, but there's a good chance that they would've had to do it again in a few days, so from a long-term perspective, having this JP drain put in saves me from future procedures.  The procedure went off without a hitch...I actually ended up having the same doctor that did my kidney biopsy, so it was nice to see a familiar face.  I have the drain in now, and it's already removed a lot of fluid....over 250cc's so far.  I think I can feel a difference near the kidney, but my leg is pretty swollen still.  I'm patient though...I know it'll take some time to resolve.

The plan is to keep this drain in for 4-5 days, and hope that the fluid pocket kind of collapses on itself.  Then they'll keep the drain in but cap it off for a couple of days to make sure no more fluid pockets form, and then eventually it'll be removed.

The drain is under the big square bandage, and that beautiful bulb in my hand is full of fluid.  Totally gross, I know.  And there's NO WAY of hiding this thing, so it looks like I'll continue to be a recluse for the next week or so :(


These are all of the supplies that I need to maintain this thing.  I have to empty it whenever it's half-full (which is about every 2 hours), and I have to flush the lines with saline two times per day.  I can take a shower (thankfully) but need to try to keep it as dry as possible (which will be impossible).  Luckily they sent plenty of bandages.
It's pretty clear that Joacim is nearly as excited as I am ;)
Honestly, this is not at all what I thought it would be like...not by a long shot.  I've been in this medical bubble for 7 weeks now (counting the week I spent at Mayo pre-transplant) and it literally is all I know.  I've run into a few people "on the outside" and I honestly just felt awkward.  Most of the time people have no idea what to say to me, and I totally understand that.  In their mind, they probably thought I'd be fine after transplant, never considering that this alternative was a possibility.  I'm sure my mind is playing tricks on me as well.  I'm so self-conscious right now because I think I have a bit of a moon face, and my eyes are pretty puffy from the fluid retention.  I think people just don't know what to think.  I find that I'm VERY uncomfortable in the land of healthy people right now.  I mean, let's pretend for a second to not talk about my kidney....what else would we talk about? I mean, I've been living in my medical bubble for a long time now....I haven't done anything that isn't somehow related to my kidney, which makes me a pretty shitty conversationalist at this point.

If you happen to see me out and I'm all hells-awkward, now you know why :)

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