Walking The Thin Man

In May 2005, I learned that I had developed amyloidosis, a rare protein folding disease. This is my story.

Wednesday, August 16, 2006

Admission Day

(from the movie "Airplane!")

Old Lady: Nervous?
Ted Striker: Yes.
Old Lady: First time?
Ted Striker: No, I've been nervous lots of times.
For some reason, that movie quote came into my head as I admitted myself into Boston Medical this morning, for what would be the first of many visits. This is typically the easy part, as you are not drugged up at this point (and still have all your hair and dignity).

We left early to deal with a much more stressful issue -- getting my mother adjusted to Boston traffic. She is from a place with people use their directionals, and get into the proper lanes to turn, so driving here has been quite a reckless experience for her. I've been letting her take the wheel since she arrived yesterday, so that can feel comfortable changing lanes at will and cutting off people without any remorse like the rest of us. So far, we're not there yet, as she still has difficulty with her defensive driving. This is making me very nervous. Well, at least I can cut down on the low-blood pressure medicine for a while.

At the hospital, I met with two of the doctors that will be managing my treatment. Although I've had some quality-of-life issues with the kidney damage, they say I am holding up extremely well. They are still impressed that I was able to get through the first transplant without needing to stay in the hospital, or even requiring a blood transfusion. (Almost everyone doing through a transplant does both at least once).

Eating the hospital cafeteria food leaves me dazed and confused.

So, this goes back to the $64,000 dollar question: what will be my dosage for the second transplant? I received the full dose first time around, and my protocol calls for a medium dose on the second transplant. However, due to my age and my (relatively) excellent health, they are willing to entertain giving me the higher dose. But the decision is a complicated one. A higher dose carries a longer recovery period, more suffering on my end, and a bit more risk (I could die from the treatment), but may provide a slightly better chance for a complete remission. But it is important to mention that I have the thing on the ropes right now, and maybe the medium dose will be all I need to put it away for good.

All of the doctors on my team were supposed to meet at 3 p.m. today to discuss my case. It was predicted that they would be split down the middle on their opinion on giving me the higher treatment. Do we violate the protocol to give me a slightly better odds?

Tomorrow I will be getting the catheter installed in my chest, and will hear the results of the meeting. Afterwards, it will be up to me to make the decision on my treatment. It is ironic that you read all of the statistics, and weigh pros and cons of each option, yet in the end, it will be my "gut instinct" that will make the decision.

In the end, I know that I will be able to make the right choice. Or maybe I'll just flip a coin.

4 Comments:

At 8/16/2006 8:49 PM , Anonymous Anonymous said...

Hi Anthony & Aunt Patty,
Just a quick note in telling you both to hang in there, though this. May God give you both strenghth during this whole ordeal. We are praying for you, in full force. Take care and hang in there.

Love,
Nickolas, Little Andrea & Jeff

 
At 8/17/2006 1:58 AM , Anonymous Anonymous said...

Hi Tony,

I am Jack Moore's sister Sue who met you in the hospital. Jack sent us his journal and it made me think of you. I am feeling sad to hear that you are going through another transplant, but darn it, guy, this will be the one that knocks out that junk from your body. You are amazing. Just know that! And keep up the good work! My prayers and thoughts are with you.

Give your mother my love.

Sue Keith

 
At 8/17/2006 11:46 AM , Anonymous Anonymous said...

Hey Tony!
I have been reading your blog for about a month now. My dad (56 years old) was just diagnosed with Amloidosis. He will have a SCT very soon here in Alabama. Keep up the fight and my prayers and wishes are with you.

Jill

 
At 8/17/2006 5:50 PM , Blogger Tony said...

Thank you all for your kind words. I will try to keep posting my progress on a daily basis, as long as I am able.

-Tony

 

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