And in the end....

Today was my last installment  of the Cytomegalovirus Immune Globulin IV.

With a little bit of pre-IV Tylenol and Benadryl, the chills were kept to a minimum this time. So although I still take a very pricey drug called Valcyte twice a day to protect against CMV, the IV portion of the program is over.

With the new drug that I started 10 days ago the tremors have gotten a wee bit better at times. And as I was out to dinner with some friends last Saturday night I noticed, quite unbelievingly, that for the first time since the surgery, I was as steady as a stone. Then, much to my chagrin, Sunday I had the tremors back full force.

At clinic yesterday Dr. Yang actually seemed excited to see me and find out how the new drug Neoral is doing controlling the tremors. I told him that I've noticed a small, slight improvement and this was all it took to make him happy. This and the fact that the results of my blood labs on Monday were excellent. He had been concerned that changing this primary anti-rejection drug might cause things to go south and was super happy to see that all my numbers were still good. Now he wants to continue to watch my blood numbers and, if they hold, in three weeks he wants to lower my dose of Neoral to see if it continues to diminish the tremors.

The "Fine Tuning" portion of our program.

That's how we're finishing the first half of this month of November.

Thanks for checking here.

Dang!!!! Flippin' ARGH!!!!

                                                              REJECTED.

                                                       Bob is not a happy boy.

In a rather revolting development the oral surgeon Dr. Seitz took a  "Whoa Nellie!!!" mindset after learning that I'm only 3 months post transplant.

 He took a quick, very cautiously quick look and said: "I'll give you some meds to deal with that for now but we are going to try everything we can to wait for the customary six month time after transplant to do any removal."

After all my work to get myself in a zen-like state and after all the prerequisite, pre-event antibiotics. Dang.

The tx center hadn't been real happy that I needed tooth removal right now stating that everybody's mouth (and BTW-TMI) is just a virtual vat of infection waiting for an opportune moment. This, along with my rather... ahem...well documented history of extensive bleeding after surgery, was the deciding factor in the Doc canceling today's eXtraction.

He says it's a fine line that we're walking here because my transplant - being so recent, and me being so immunosuppressed, that infection could flare in this tooth at anytime but, by the same means, opening up things right now could be an invitation to a bad party and so we are going to try to hold out, wait and see. 

The Doc did give me a scrip for more antibiotics and a few other drugs (yep. more pills.) and told me if things become intolerable that they will get me in on a moment's notice and it will be done.

So I got that goin' for me....which is nice.

That's all the non-news for now.

Clinic and some more Yin with Dr. Yang tomorrow.

Thanks for checking.

Time isn't holding us.....

This coming week is action packed with blood tests, a few large doses of prophylactic antibiotics for certain necessary dental maneuvers, (i.e. - wisdom tooth removal), clinic appointment, more blood labs, and I finish out the week on Friday with the third, and hopefully final, installment of the 3 hour Cytogam IV therapy.

Sans chills.

Doesn't seem fair that only some of us get to have all this fun.

If you care to hear how any of it goes check back later. 

I'll be sure to post something.

Thanks for checking in.

Three Month Mark

         Started the new med today.

   These buggers are as big as they look.

Ch..Ch..Ch..Changes.....

October went out with yet another change in meds as directed by Dr. Yang at clinic yesterday.

It's sorta-kinda big because it's one of the magic three immunosuppressants that make up the "magic cocktail" that they don't fool with too much. The doc wants me to switch from Progaf to Neoral which he says should reduce the tremors that I have by a whopping 50%. 

Hmmmm.

I'm keeping an open mind.

They've also cut back on another drug and added some more new ones.

Such is life after transplant.

I mean somebody has to support these drug companies. 

(No offense to all the Pfizer folks in my family.) I am very  grateful for the medications and what they do for me.

Even with these changes, the tx team is happy with my progress. They took 8 tubes of blood for more tests yesterday and Dr. Yang made it a big point to tell me just how great my creatinine, BUN, glucose, amylase and lipase levels, among others, are.

They want to see me back at clinic in two weeks.

Tomorrow is my three month mark and despite my occasional grumbling about the side effects, I am a heck of a lot better than I was three months before the surgery. 

And I am forever thankful for that.

Thanks for checking here.

Ice in my veins....

Sorry Laura!

I did kinda leave that hanging! 

The Cytogam IV went well for the most part last Friday. It just took a little longer than the usual 3 hours because 2 hours into things I got a wicked case of the chills.

A kind of "rattle you out of your skin" chills. The nurse sussed it out pretty quickly and took my vitals and unhooked me from the IV. I tried to persuade her that all the shaking was just me bouncing my leg (which I do.)

She didn't buy it. 

So I then I apologized for keeping my house so cool.

She saw through that like a cheap suprise.

Then I tried: "Well I DO have tremors!"

Un Uh......Nope......No way.

She responded by asking me how close EMS was. 

She wanted me to lay down and cover up but I got her to settle for me putting on a sweatshirt and having a cup of hot tea.

Over the next 45 minutes the nurse took my vitals 5 times asking me questions the whole time. After the 45 minutes or so....the tea worked or least that's what I tried to sell. She said it was the current absence of Cytogam and then after a dozen more questions, she restarted the IV at a much slower rate. Nurse Barb tells me that this is one of a myriad of side effects that are possible with Cytogam. She was just super happy that it didn't progress to anything else.

I did have chills (not quite to this extent) at the end of the first treatment, but I wrote it off and persuaded the nurse that it was nothing. She made note of it and let it go.

This nurse Barb (the first nurse was named Barb as well) was a real stickler for every detail.

Afterwards, I was fine. My Dad came to visit later in the afternoon and we had a great weekend. 

So all is well that ends well.

Final installment of Cytogam is slated for November 15th and then I'll be done with this noise.

Thanks for checking Laura!

More soon.

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.