23-days post-transplant

I thought my reality post-transplant would be different than it is.  There have been so many ups and downs, and I can't possibly keep track of them all, but I'm going to try to bring everyone up to speed.

First off, I'd like to say a huge "Thank You" to everyone that is still hanging out with me on this journey.  I know that a lot of you are looking for frequent updates because I'm usually pretty good at it, but everything that I've been through has definitely pulled the rug out from under me.  There has been several times that I wanted to write something, but I didn't think I could find a single positive thing to write about, and after awhile I just sound really depressing, so I stopped writing entirely.  I was also worried that Adam would somehow think that I didn't appreciate his amazing act.  Believe me, I do.  This is still SO MUCH BETTER THAN DIALYSIS.  I'm not sure if I'm a whole lot better off, but I figure it's time to dig my heels in again and keep moving forward, and getting it out of my mind and into this blog usually helps, so I figured I'd give it a shot.

Since October 29th, I've had the following tests/procedures:

• 21 blood tests
• 21 urine tests
• 1 kidney transplant
• 15 plasmapheresis treatments
• 2 IVIG infusions
• 3 thymoglobulin infusions
• 1 blood transfusions
• 1 kidney biopsy on my transplanted kidney

Yes, it's a lot.  Every day that I have a blood or urine test is fraught with fear and anxiety over what the results will be.  A bad result will wreck my entire day, and maybe the next day if I don't have another blood test scheduled for the following day.  And the longer this goes on, the harder it is to pull myself up by the bootstraps and look forward to what's next.

My FSGS is back.  It's mild so far, but it's definitely back.  When I came to Mayo, I was spilling over 40 grams of protein a day.  Right now, I'm spilling 2.5 grams, which is a HUGE improvement, but my brain can't get past the fact that I remember the course my disease took the last time, and it wasn't pretty.  Around 5-6 grams was when I started swelling severely......anyone that I worked closely with at Lilly will remember the days when I could hardly wear shoes.  I think about that, and I get so scared I can't even stand it.  And no one knows what course the disease will take this time, or how long it will take, and that unknown has stripped my spirit.  I've talked at length about how awful the state of limbo is for me, and guess what?  I'm right back in it.  I thought after transplant that I would at least have a significant period of time where I didn't have these worries, but I only really had 2 days before FSGS reared it's ugly head again.  I was totally robbed, and will spend the rest of this transplant worrying or wondering if the end is near.

On the plus side, my creatinine is 1.3 (pre-transplant it was near 18) and that's an amazing, which means that my new bean is handling all of the stress the rest of my body is putting on it with elegance, grace and determination.  I don't know how long it will last, but I'm incredibly thankful for it right now because it's the one source of hope.

I had a biopsy done on Tuesday, which was unplanned and honestly terrified me.  I got preliminary results and was able to speak with my doctor on Wednesday afternoon.  Great news is that my glomeruli (filters) look completely normal (i.e. unaffected yet by the FSGS).  This is great news because once the scarring starts, it can't be repaired, so we're definitely early in the game which means a better opportunity to reverse this.  The bad news is that the biopsy showed some mild rejection.  This isn't totally abnormal but it is something I'm worried about.  This might explain why, even after 15 plasmapheresis treatments, that my protein spillage is still above 2 grams.  All of those plasmapheresis treatments probably removed most of the thymoglobulin (IV anti-rejection medicine) that I received during and after the transplant.  The current plan is to increase my prednisone to 60mg for 3 days (I was at 15) and then slowly wean down again.  I'll do blood and urine labs tomorrow morning, then plasmapheresis, and then I'll do a thymoglobulin infusion after that.  That particular infusion is a longer one (~4 hours) so it sounds as though all of us are going to Rochester tomorrow.  We'll drive back home after that and spend the weekend here, and then Annika and I will go back to Rochester early Monday for more blood and urine labs, appointment with my PA (physician's assistant) and Dr. and then do another plasmapheresis treatment.  The hope is that the thymo will have a chance to work over the weekend, and combined with the plasmapheresis on Monday that we'll start to see my protein decrease.

That's the plan for now, but it can change at anytime.  I should get the EM (electron microscope) results of my biopsy tomorrow, so that may change things a bit.  We've hopefully checked out of the hotel for good, and will be able to drive down for the days where I have appointments.  My prograf level seems to be fairly stable right now, and the tremors aren't awful but it is difficult to do any handwriting at this time (which is why I'm such a fast typer...I had to compensate because my handwriting is dreadful on these drugs).  Don't be surprised if my Christmas cards seem completely impersonal because I'll be using pre-made address labels :)