My Sister is A Match! Countdown Starts.

12 days ago from the time writing this, I got an email from  a wonderful Onco NP Medico  at  Duke.

Hello Mr. Siegel,

Thanks for checking in.  It sounds like you are agreeable with proceeding to transplant.

We just received the report for your sister's HLA typing late yesterday.
Congrats, Laurie is a perfect match for you!
This means we can start planning any time.

You may tell her yourself, or I can do that for you, either is fine with me.

Incidentally, there were several matched unrelated donors on the registry that are also perfect matches for you, had your sister not been a match for you...

Have a great weekend.
We look forward to seeing you soon.
Kind Regards,

Your NP who shall remain anon.

So it begins.

The decision to undergo Bone Marrow Transplant (BMT) is not an easy one, as the morbidity rate for someone of my age is a bit of a crap shoot. But the odds are worth it when one weighs the chance of recovery and survival against the slow, transfusion-dependent demise I am currently experiencing. The doctors are optimistic, and we are too. 

My Re-Birthday is scheduled for April 3, 2013.  Actually it is more of a relaunching, since I was born again once before.

Anne will be my full time caregiver, and the procedure requires that we be in Durham for at least 4 months, spent as both an in and out patient.

Duke has an arrangement with http://www.oakwood.com/  for ground floor apartments that are a few minutes from the Hospitals and we will be renting one for the duration.  More on that in a later post.


Thought I forgot the Soundtrack?
Countdown - flashback to 1969

Time is now measured in NASA-speak, backwards from T minus Zero

Today is T-22, or DOT minus 22:  Twenty two days until Day Of  Transplant.   

The way it works is as follows: 

T- 6  through T-2  In the week run up to my BMT, I will receive doses of chemo, and possibly radiation to kill off all my defective marrow stem cells.  Concurrently my sister Laurie, as Donor, starts a series of Neupogen shots to stimulate her White Blood Cell  production. 

T-1   I get to rest for a day, after getting toasted.  Laurie continues with Neupogen, and starts Apheresis.
More on that later.

Day 0 ,  Laurie has Neupogen, injections, Apheresis, and labs.  I get infused with donor marrow.

Then the counting is DOT +1 , +2. etc. 

Post transplant I will be kept alive by transfusions and IV abx as needed,  and after 28 days Laurie's Stem Cells should have engrafted,and set up shop in my marrow, and started to produce new healthy blood.
So My blood type will change from O+ to Laurie's type, and I will have two y chromosomes.  

Outpatient

As soon as possible post BMT, I will move back into the apartment where Anne will have been living, but return to the hospital every day for monitoring, therapy, exercise, etc. During this period the potential for Graft Versus Host Disease is very high. Assuming the new blood does not “see” my organs as “other” and try to destroy them, I should be out of the woods.

If I make it 100 days, I get to go home to Beaufort, and there starts a new set of risks as my new immune system adapts to the dust, microbes, germs, molds, etc, that everyone encounters daily. If I make it a year, I will probably make it 5, if I make it 5, I will probably make it 10.

So right now I am trying to build up my strength for the Transplant, and putting things in order. The paper work part is done (new wills, power of attny, etc)  and I hauled the boat yesterday. 


More to come, 

Chris