Overdue Mayo Update

I saw Dr. Fervenza for a follow up appointment on July 30th.  My parents came out to stay with Morgan, and Michael and I flew up to Rochester, MN for a long weekend.  We were able to visit a friend from college and meet her adorable little one (miss you E!).  We also got the chance to meet two awesome ladies who are dealing with kidney disease.  It is always funny to meet someone in person after talking with them so much online and on the phone.  I feel like I've known these girls for a few months now, but on the other hand, I technically just met them.  Social interaction and making new friends when I was growing up didn't involve a computer.  It is a new experience for me, but one I am incredibly thankful for!! 

Dr. Fervenza was pretty excited by my labs.  He called them beautiful actually and kept grinning and crossing his fingers.  My 24 hr clearance results came back at 69mg.  I've gotten back spot rate checks in the last couple months that have been in the 80mg range, and that has been really exciting.  Anything below 150mg per day is perfectly normal.  Those were just spot rate checks that use a little math to calculate the 24 hr rate.  This 69mg result was the actual measured amount that came out of my body**.  Relief doesn't cut it.  I was spilling 27g at the end of March.  That is 27,000mg and 3 orders of magnitude larger!  My kidneys have recovered, and I am in complete remission.

I'm beginning a full blown medication taper now.  I am able to drop the lipitor, prilosec, lisinopril, and bactrim outright.  I am also taking too much Prograf and can drop to 6mg per day.  The injections I can stop in two weeks.  My discontinued medication box is overflowing, while my active medication box is nearly empty.

 

 

If my labs remain stable for the next 3 months, I can begin a 1mg per month taper of the Prograf.  This will be the tricky part.  If I relapse during the taper, the doctors can hopefully figure out the lowest does of Prograf to keep me in remission.  Granted staying on a drug that can itself be nephrotoxic for the benefit of remaining in remission for proteinuria is not optimal.  We'll cross that bridge and weigh those pro & cons when we get there I suppose.  For now, the important thing is that I am a completely normal person, and I have the lab results to prove it :)

 

 

 

 

**Side Note:  It was actually explained to me that the lab takes your, um, "clearance" and shakes it up in your little jug to get it nice and homogenous.  They then take a little sample, run their tests, and calculate the clearance using the total volume of the sample you provided to them.