Mayo visit update (2nd appt) : FSGS Sucks

Hey all!  I just got back from my 2nd appointment at Mayo, and I continue to be amazed/impressed/thrilled.  I had to leave at a gawd-awful early time (6:00am), but it's worth it.  Hey, if they tell me to be there, I can make it at any time (not so much with everything else, but that's another story :).  My friend, Caroline, joined me.  She's becoming my "Mayo buddy", and it's great to have her to keep me company (plus, I think she remembered how to get around there better than I did!)

I'll make this quick, because I've only got about 20 minutes left of the silent bliss that is in my house right now before the family gets home.

I think Dr. Fervenza is fantastic.  My protein has gone up (from 10135 to 15600) but that's not necessarily indicating that I'm getting worse (meaning I'm pretty much already as bad as it gets :)  .  He took the time to show me a chart that displayed how variable protein spillage is.  He actually took A LOT of time for me, which is amazing considering his schedule.  He answered all of my questions, joked around with me,..he even wanted to see a picture of Izzy, which I take as a VERY good sign of someone who cares about ME...not just my kidneys.

He understood that the Cellcept side effects were just too great for me (at least while I'm working), so we're going to bump up the Prograf to hopefully get to 7mg/day.  My last experience with it wasn't great (tremendous headaches and tremors), but that's more tolerable than the cellcept, so I'm game.  I'm going to bump it up a gram each week and see how I feel.  We're also doubling my dose of Acthar, from 40 units to 80 units...still twice a week.  He really wants to be more aggressive, and who am I to disagree with that?

I talked to him a bit about plasmapheresis, and while we didn't go into a deep discussion, he said that they have little experience with it in adults...children yes, and adults/children after transplant but not before.  He said let's give this another month, but that NOTHING is off the table, and that's exactly the answer I wanted to hear.  That he's willing to consider different things is important to me, and I thanked him for his honesty and openness.

It was another great appointment.  He even let the nurse know that he would still be ale to see me if he was scheduled for the hospital that day.  Apparently that means I'm special (hey...in the GOOD way!!!)

 So, keep your fingers crossed for me that we start to see some improvements, but be thankful that I found THE BEST place for me.