Neal's Question about BMT

[Guest guest]

Neal,

I am and my 20 yo daughter had a BMT August 10th last month for

CML.  Her CML was showing signs of no longer being responsive to gleevic or the

other meds, but mostly gleevic.  She has come through it magnificantly so far. 

I don't know if going into it if I had ever had such a high level of anxiety in

my life, but fortunately so far our worst fears have not been realized.  The

doctors planned to release her to the Mc house yesterday, but at

the last minute her left eye got swollen and puffy until it was closed.  The

docs are keeping her for at least another week.  They are not sure why this

happened.  By last night it started going down and when I talked to she

thinks she might have given herself a black eye by rubbing it because it

itched.  It all happened in a short period of time.  She took a morning nap and

when she woke up an hour later is when it happened.  When she was on the chemo

she was miserable

and mostly slept.  The have various medications that combat most all of the

unpleasant side effects and when she was asleep she was at least at rest.  She

is bald now, but I am so proud of her because she lifts the spirits of those

around her.  With the eye thing yesterday I said she must look like a pirate and

she said it was more like Quasi Moto.  I wanted to sign her head like a cast,

but she wont let me, I just don't understand.  The restrictions she will be on

after she gets to leave the hospital are pretty extensive, no public indoor

places, no shopping, no milk, wear the mask near construction sites, etc etc. 

The restrictions are in place for about a year.  The doctors are extremely happy

with her progress and said it may be some sort of record her recovery, but they

indicate that her recovery may be from havine a very close sibling match.  There

are also some potential long term consequences of the high doses of the chemo,

but with the

reading I have done on BMT, but most people that have a BMT say their quality

of life improved afterwards.  I know this is pretty long winded, which is

unusual for me, but I have been witnessing a BMT process over the past 30 days. 

Something else is when the bone marrow was going in it is done through an IV

into her hickman and they monitored her blood pressure very close because adding

all that bone marrow into the blood stream increases the volume of fluid in the

blood stream.  If you go through with the process when they hook up all the

lines for the fluids/medications that will be going into your body you will look

like one of those over loaded outlets with all the Christmas wires plugged into

it that you hear about.  Also when she was feeling the most miserable and not

eating they give her TPN.  Total parental nutrients through the IV so you will

still be gettng essential vitamins.

I wish you great luck with your decision and prognosis.