Less than stellar news to report

We got the electron microscopy results back from my biopsy today, and it does appear that the FSGS is being rather aggressive and affecting my new kidney.  Preliminary results that I talked about yesterday didn't show it, but EM is the most accurate way to diagnose FSGS.

Obviously, not so stellar news.

I spoke to both my PA (in person) and my doctor (via phone today) to discuss next steps.  As of tonight (and I say that tongue in cheek because a game plan for me is a moving target), the plan is for me to be aggressive with plasmapheresis, so I'll do it tomorrow, Sunday and Monday, which will make 4 days in a row counting the session I had early this morning.  We'll do urine tests every day to see if the protein level is dropping, and on Monday I'll have another dose of thymoglobulin, which means another incredibly long day.  Plasmapheresis takes about an hour, and I usually nap through it, but the thymo infusion is around 4.5 hours, and time just crawls.  I will probably be at Mayo until around 9:00pm Monday night, so it looks like Annika and I will be spending the night down there.

It's a tricky balance right now.  It would be great if we could stop plasmapheresis temporarily to give the thymoglobulin time to work on the rejection.  The risk is that, if we stop, my protein will go through the roof and we'll never get it back down again, so we're trying to figure out what the optimal frequency is for someone like me.  I got the "you're an interesting case" schpeel again today, and prior to transplant I thought this was a good thing, because that meant more eyes on my case.  Now, that usually just means shitty news, and today was no exception.

I told Joacim and Annika that I needed some alone time, and I plan on going to Mayo by myself tomorrow and Sunday.  Plasmapheresis is pretty easy, and I'm able to drive by myself again since it's been a couple of days since I took oxycodone.

I could REALLY use a good night's sleep, but that is also elusive right now due to my high dose of prednisone.  I'm starting to taper from 60mg but it'll be another week before I'm back to 15mg, so another week of shit sleep.  To give you an idea of how bad it is, the other night I took 2 benadry. 1.5mg Xanax and an Ativan, and I still only got 4 hours of sleep.  I just lie there and thoughts swirl around my head, and there is no sleepiness.  I don't feel tired (sleepy) during the day, but I am tired of all of the lying around that I do.  There is just no way to keep myself entertained sufficiently during these treatments.

I miss yoga, but I'm a ways off from attempting even the most rudimentary of poses.  I don't want to risk a hernia developing anywhere near my scar, as that sounds truly awful.  The scar itself is healing quite nicely, but there is one area that's a bit hard, for lack of a better description.  It's right where my underwear and pants wear on it.  The weird thing is that I still have pretty much total numbness in the area of the kidney, as well as the top of my right thing, but I do get prickly sensations when fabric starts to rub against it too much.  Sensations are coming back, but slowly.

I did ask today how they determine that the rejection is reversing, and the only way to do that is via biopsy, so it looks like I may have to have another one around Christmas time.  Yippee.