Saturday, September 21, 2013

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.

Friday, September 20, 2013

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.

Tuesday, September 17, 2013

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.

Monday, September 16, 2013

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.