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.

Now for something completely different......

Today 9/11, is my Dad's Birthday and for those of you that are lucky enough to know him - you know he rocks.

He has helped so much with everything since the transplant. Taking me back and forth to the hospital (a couple of times) to clinic, and just helping here at home with my family.

I am forever grateful.

Here's a repost of an earlier pic of him Skyping from home while I was in the hospital.

 

How cool is that?

Happy Birthday Dad!

Love ya!

Times will change.....

Clinic today seemed to go well.

Dr. Narins and his staff were all really happy at how good my incisions look on the outside but caution that the majority of the heavy healing is going on underneath and inside. He waived me off of doing anything more than walking short distances for exercise. Explicitly - no sit ups for now and no simple bike riding (my latest idea). 

Argh.

He wants to see me back in Clinic in two weeks but he will continue to monitor the bloodwork labs that I will continue to have done twice a week for the foreseeable future. 

Dr. Narins also says that if the tremors continue (which he admits I have a pretty darn good case of) he will eventually look at putting me on some "alternative" medicines. He wants to hold that card for now as he says that the meds that I'm on now are the best (albeit the side effects) for my given situation.

He and his whole staff seem very happy with my improvement. My creatinine is steady at .09 and my bloodsugars are spot-on. Where I see my limitations, easy fatigue, and side effects - they see progress. The doc said today "You've had not one but TWO transplants, we rearranged your insides, you're healing but it's going to take some time!"

I am lucky to have such a team.

I'll write more soon.