You have to learn to live with what you can't rise above....

Yesterday at clinic I arrived at 7:15am and had the obligatory bloodwork done and true to their word when I walked into clinic at 8:30 they already had most of the results.
Incredible.
I was then greeted by Dr. Yang, not Dr. Narins as I had expected.

- A little aside here.

Dr. Yang is the "Big Chief" at Pinnacle transplant center, he is a brilliant man, a renown transplant surgeon who has been at it for a very long time, and everyone highly respects his expertise and skill.
However, where Dr. Narins (one of the surgeons who actually operated on me) will come in and sit down, talk to me, discuss things in detail, answer all my questions to my satisfaction, examine me, and explain the next course of action, Dr. Yang comes in with a wonderful smile, shakes my hand, tells me how great I look, explains that my "numbers" are perfect, (textbook perfect yesterday.) and gives me short answers to my questions and leaves.
He is very amiable, but he is very busy man and I get that feeling.

Dr. Narins had told me he would change me off one of my meds to something different yesterday to ease the tremors. Dr. Yang, not so much. Instead he boosted one of my drugs that I'm already on in an attempt to calm things down but does not want to make the big drug change until.......and get this.......
AFTER NEW YEARS.

Can you say GRRRRRRRRR?

I about swallowed my tongue!!! I said WHAT?!?!?!?!? I mean these tremors are really bringing me down. They are relentless - 24/7.
The only pretzel-logic answer I got was: "You don't want to be in the hospital over the holidays!"
"True words" I said, "But Thanksgiving is still two months away!" to which he repeated:
"You do NOT want to be in the hospital over the holidays!
Just tolerate the tremors through the holidays then we will make the big switch afterwards."
Maybe it's just me but......this seemingly significant possibility of "being in the hospital" because of a med change doesn't sound like a very good way to start the new year.

Bob is a bit bummed. I mean, everyday, people ask me how I am feeling and I want to say "Great!"
instead I have to say "As soon as they get the meds worked out I will be great."

On other fronts, they took me off of CellCept (after I just received 60 days worth from the pharmacy) and put me on Myfortic which is a slight derivation of CellCept, hopefully w/o the side effects associated with CellCept.

I know, I know,....you warned me about this Jan.

As for the nagging cough, they agree with Dr. Daly's treatment and want me to follow his instructions.

So what started with the joy of "Your numbers are text-book perfect" was tempered a bit with everything else.

But this is my road and I'll walk it.

Sorry for all the bitchin' today. I'll cheer up for next time.

Thanks for checking here.

Dos Meses

Two Months

 

Well it's kinda hard for me to believe that it's been two months since my transplant surgery, I mean it's been a twisty, curvy, sometimes rocky road and two months ago, at this very moment, I was under....waaaaay under and under the knife. I remember being wheeled to pre-op and thinking "I can't believe that this is actually going down" and resigning myself, as the song goes, "to gravity and the unknown."  In retrospect, I should have been a lot more scared but the Pinnacle people know just the right mix of drugs to give you so the anxiety level is maintainable. Looking back at some of the posts from that day now almost seems like history.

 

And so.....as I mentioned at the one month benchmark (and probably will again for months to come)

I have been looking at the clock and thinking about where things were at this time on August 2nd.

 

 

Again, thanks to all of you for your support, and prayers through it all.

Please keep 'em coming.

 

 

As for news.... tomorrow I was scheduled to have clinic in Harrisburg at 8:30 but they called this morning and want me to come up at 7:15am to the hospital to have some extra blood labs done as they are finally trying to address some of my most severe side effects namely the ttttttttremors, nagging cough, and fitful sleep. They called yesterday morning to tell me to get a chest xray and then had me go see my primary care physician Dr. Daly. This cough has been increasingly troublesome for the past three weeks and it is really hurting my longest incision over my pancreas to the point where I darn near double over when I cough. 

So I hope we get some closure on that AND the tremors.

 

My bloodwork from Monday showed my platelets are running high so I'm sure they'll adjust something to work on that too. All my other important numbers - creatinine, white cells, lipase, glucose are all super. So despite side effects the docs are going to say - 

"The organs are working wonderfully!"

And really......that is the goal.

What a lucky guy I am.

 

I'll let you know what I find out tomorrow.

 

Thanks for checking.