Post-transplant update

I'd like to apologize for the complete radio silence from me, but it was necessary.  You spend 10 years  waiting for an event, and when that event doesn't go as planned, it stings.  I'm not going to be able to catch up on everything because, well, I'm tired and I just don't feel like I have the energy to dedicate to a post like that.  This blog deserves that, as do the people that take the time to read it.  I WILL catch up eventually, because my OCD nature will compel me to, but I'm not putting myself on a timeline.

I'm going to keep this pretty short.

My FSGS is back.

So now what?  The first few days we were just watching it, getting more data points to see the general trend which was up.  And then it would lower, and then it would go up again but not as high as the highest, so it was really hard to see where it would land.  This morning's blood work showed that my albumin/creatinine ratio had reached ~2700 which is pretty high.  My blood pressure has also been steadily rising...this morning it was around 145/93.  I was discharged from the hospital without blood pressure medications, but today's results change things.

So, this afternoon I started plasmapheresis treatments again.  I'll do 3 days in a row, and then every other day.  Plasmapheresis removes 70% of the antibodies in my system and replaces them with albumin.  So tomorrow, I'll have 70% fewer antibodies in my system, plus the new ones that my body is continually making, and we'll remove 70% of all that tomorrow.  Repeat on Wednesday, and then every other day.  It's not bad...kinda like dialysis but MUCH slower run rates which limits the feeling of vibration.  They also give me something to combat that vibration when it happens.  I just wish they did that same thing during dialysis because it's AMAZING how fast it works.

We're also adding blood pressure medication to the mix, starting with a rather low dose of Losartan (Cozaar) twice a day.  My prograf trough level dropped from yesterday's 4.2 to 4.0, and we want it somewhere between 8-10, so my doctor raised it to 6mg 2x/day.

I met with the in-clinic nephrologist today to review my labs and check out my incision to see how it's healing.  He was great..patient, listened.  I then met with the social worker because I have specific Medicare questions that need to get answered because our open enrollment with Joacim's work ends next Wednesday.  Joacim and Izzy stayed an extra night so he could be there for the conversation.  They left right after that, which makes me sad, but Izzy was so happy to go back to school and be home!!!

So the plan is to take it day by day and see how it goes.  My doctor's are still very happy with Adam's kidney....it's handling the stress remarkably well.  My creatinine is 1.4, and my doctor said anything between 1.5 and 2.0 is great, so that was a bit of a relief.  I tell you, that's basically the only reason I'm not utterly freaking out.  The changes we're making are good ones.  I, of course, will do whatever they tell me to do, but I'm REALLY happy that we started plasmapheresis today.  Tomorrow morning's lab results may not show any difference.  In fact, my protein may creep up a little bit more because (oversharing here) I had awful diarrhea today.  That can happen with Cellcept, so not totally unexpected, but not pleasant at all.  I swear I'm drinking as much water as I feel possible, but it still may not have been enough today.  We'll see.

Just want to end this post with a quick picture of my new meds.  That's 36 pills a day my friends.