Whole lotta' shaking going on......

Not a whole lot to report this week.....my blood labs from Monday were all acceptable.
We'll see what today's lab results are tomorrow. The people at the local annex all know me by name now because they've seen me at least twice a week for weeks now ...how sad is that ?

Tomorrow, the nurse from Coram comes to give me my second 3 hour IV of Cytogam.
Hopefully all of that will go well again.

My next official clinic appointment isn't until October 31st so I'm hoping for a treat (maybe in the form of a med change to get rid of these tremors) and no tricks.

That's all I got for now.

Thanks for checking here.

It's funny when things change so much... It's all state of mind

Things got a little interesting this week as I changed one of my main immunosuppressant drugs from CellCept to Myfortic as I had posted earlier. 

Myfortic is a slight derivation of CellCept but supposedly without some of the nasty side effects, so far this seems to be pretty much the case. Not total absolution of side effects, but definitely less.

The other item of interest was the call I got this week from the tx center as it seems word had gotten back to Dr. Yang that I was not totally down with his quick dismissal of the tremors for an additional 3-4 months. The good doctor wanted me to come up and see him Thursday morning so he could explain things a bit more succinctly, which he did. 

What I hadn't realized to the fullest extent was just how wigged out the whole team had been about the one, brief, episode of rejection that put me back in the hospital at the end of August. Evidently such sudden episodes aren't quite the norm so early in the immediate post hospital days.

At the time, it seemed to me, that they handled everything so quickly and so matter-of-factly that this wasn't anything too big to worry about.

Thursday, I learned that they were a bit more worried than what I was initially led to believe. And so with this episode in the not so distant past, Dr. Yang does not want to risk any such episode again any time soon. He told me that most transplant surgeons do not mess with the time proven cocktail of the three immunosuppressants that I'm currently on until, at the very least, the 3 month mark and prefer waiting until 6 months out.

Not completely dismissing my problem with the tremors this time, he scheduled me to see him on Halloween (very close to the 3 month mark.) He will then review my blood labs from the past 3 months and will council me as to whether or not we can safely make a switch.

And so it goes.

Thanks for checking in here.

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.

 

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.

Thanks for checking here.

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.

Thanks for looking here.

Richter Report...

I started the Astagraf XL this morning with high hopes that this new approach would help curb the tremors, but by about lunch time it was apparent that was not going to be the case.

Not only are the tremors 2x worse, but the lo-grade fever is back and my heart rate is really high.

Argh.

I called the tx center and the nurse advised me to tough it out today and go back to the standard Prograf twice a day tomorrow 

And we all know how that works.

I would be game for trying to give new drug a shot for a few days if there's light at the end of the tunnel (especially since I've got a 2 month supply of it now) but I have to go by what they tell me so my drug pioneering days may be over.

I'll keep you posted.