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.

Pills to prevent Ills........

Even though I didn't have clinic in Harrisburg this week, the transplant center continues to review all the bloodwork that I've had done and for the third time this week, they've called and again changed my meds.

Today I received yet another box of drugs overnighted from the pharmacy in Long Island with a brand new alternative to the Prograf that I've been taking.
 Prograf is a strong immunosuppressive drug that beats down your immune system to help avoid rejection of the new organs.
Prograf is also one of the main culprits in the causing of the tremors that continue to bug me.
I've been taking a dose in the morning and double that dose in the evening.

Dr. Yangs thinks that perhaps the spikes in the amount of this drug in my body is a big contributor to all the shaking going on and has discontinued my current regiment of Prograf and replaced it with a new drug that's only been available in this country for two months called Astagraf XL which is basically the same compound, just extended release.

So I will take a double dose once a day in the morning now and we'll see how things work out.

In a strange twist of fate, Pinnacle was one of the transplant centers where this drug was initially put through experimental trials and researched more than ten years ago and so with it's recent release,
I am one of the first to be put on it post transplant.

Just call me "Cutting Edge Bob" (well...it beats the heck out of Shaky Jake.)

That's all for now.

Thanks for checking.

No Problema

OK, well as far as a three hour IV goes, that wasn't too bad. 

The Cytogam Cytomegalovirus Immune Globulin Therapy Dose #1 seemed to go well.

No need for EMS. No harsh reactions.

They caution about muscle pain later but it's way too nice of a day so I'm not  going to anticipate any trouble. 

Seems like a lot of hype for just an IV (as I've gotten pretty darn used to them) but it IS a blood product and as the nurse said: "Better to error on the side of caution."

Thanks for checking in here.

There's no reason to get excited...

So the drug delivery man came tonight at 8:30 with 3 packages of drugs, an IV pump, IV pole, sharps container, bags, syringes,  swabs, tubing, additional Cytogam info, and about 15 pages of paperwork for me to sign.

One of the most interesting was this page:

....listing all the risks and possible side effects of tomorrow's Immunoglobulin IV therapy.

 

 

Guess I better cross my heart and spit.

I'm seriously hoping that it all goes rather uneventfully.

I'll let you know.

Two Weeks Out...

Today has marked two whole weeks that I've been out of the hospital now and although the recovery life runs at a slow pace there has been some improving albeit slowly. Thus the reason for no daily posts lately.

There were a few changes in my meds after clinic on Monday. 

Magnesium Oxide was doubled to stave off the hand and leg cramping which had begun to bug me.

Sleep is still very fitful and tremor city continues.

Thursday, I had bloodwork labs done first thing and then later I had an appointment with my nephrologist. Although they had been apprised of my transplant and kept very up to date by the staff at Pinnacle, the reception that I received there was unbelievable. The office staff were authentically excited to see me. 

Dr. Schendel met me in the waiting room with an ear to ear smile, congratulations, and a hearty handshake. He was like a kid at Christmas - so psyched that all had gone the way it has. He was very enthusiastic, full of questions about the whole experience with a very genuine interest and just a hint of a "I knew it would be this good for you" attitude. 

He examined me, reviewed all my new meds, answered questions, and assured me that I'm doing quite well. As far as the swelling in my abdomen he tells me that a lot of it right now is edema and that it's not going away until my body is ready to absorb or otherwise get rid of these extra fluids.

My nephrologist is second to none. And as with the rest of what I commonly refer to as my "hand picked medical team" 

I am extremely fortunate to have him / and all the rest of them.

Today the IV drugs that they are to give me on Tuesday were to be delivered today but nothing came. I'll be sure to post how it goes on Tuesday as there has been a good deal of hype about it so we'll see.

I continue to enjoy these fine late summer days with a renewed appreciation.

Hope things are well with all of you.

I'll post again soon.