Life Upgrade

It was a very early morning today.

First blood test was at 6:15, followed by me taking my CellCept and a second bloodtest 30 minutes later, then a two hour layover and yet a third bloodtest.

 This is a cool new feature at Pinnacle.

After all that it was a good day at clinic as I got to see Dawn, Becca, and Deb, a trifecta of great people at the transplant center. Then I was examined by Dr. Narins who is very happy with my overall progress. Both he and Deb said they want me "to start living." 

Living.....i.e. being able to go to the farmer's markets, being able to ride my bike (cautiously), start other lite exercise, and even go to church.

(Again with instruction to be one of the last ones there and one of the first to leave, keeping handshakes, etc. to a minimun.)

So this is wonderful and very welcome news to me!

In a bit of a departure from what I've experienced in the past when I've told the docs about the side effects and they've said "Well your new organs are working fine."... today Dr. Narins wanted to address the tremors head on.

He has taken me off of the"new drug" Astagraf XL because not only didn't it help with the tremors, but it also wasn't staying in my bloodstream for as long as I need it. So back to Prograf I go... but just for now. They want to see me back at clinic next Thursday and Dr. Narins plans to put me on another, different, immunosuppressive alternative all in the hopes of losing these darn shakes.

He also rearranged my CellCept doses to alleviate some other nasty side effects, and he has given me the OK to use cough medicine to treat a nagging cough that has been buggin for the past three weeks.

So even though they had most of my bloodwork from this morning available to review at clinic today, there are other results that are still pending.

All in all, it was a long, but good clinic checkup day.

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Astagraf Redux

After the last post I got to thinking and sorta felt embarrassed that I was going to bail on this new drug after the rough start.

So flying in the face of what the nurse had told me, I decided that I would give it a go and try to continue taking the Astagraf XL.

Yeah this kind of free thinking has gotten me in trouble before so I was sort of bracing for some fallout from the transplant team but when the nurse called me this morning with the alternative plan and I told her what I had been doing she was actually kinda psyched. 

She was definitely happy that I had stayed the course. 

So the moral of the story is: 

"free thinking rules."

Or maybe "even a blind squirrel finds a nut sometimes."

So the coming week is full of adventure.

Blood labs this morning.

Dexascan tomorrow morning to get a base line of my bone density to use a reference since the high amounts of steroids tend to wreak havoc with the aforementioned.

And starting yesterday I'm back to taking two major doses of CellCept am/pm exactly at the same time each day for the next four days and then on Thursday, at clinic (6:15 am), they are going to test me for CellCept absorption or some such matter. I just know it is pretty darn early, I can't eat or drink anything for 12 hours prior, and they're going to take three separate blood draws over three hours.

I can't make this stuff up.

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