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First
Stem cell transplant patient in
USA undergoing this procedure.
Hi, my name is Jennifer.
I am 33 years old, have never been sick
and in the last 2 1/2 years have been slowly declining and
debilitating from CIDP. I was initially diagnosed with
GBS in 11/02. At that time I was placed on IVIG which
helped in reversing my debilitating weakness but quickly
lost its effectiveness. I have been on plasmapheresis
since 1/03. For me this has been the most effective
treatment. At first when I was on inconsistent
plasmapheresis series I would physically decline rapidly
needing assistance for basic needs such as dressing,
bathing, eating and walking. I was wheelchair bound a
couple times. I went to MAYO Clinic in the Summer of
2003 and was placed on a chronic treatment planof
plasmapheresis 1-2X/week since that time along with high
dose immunosuppressant drug therapy. I have required 7
central lines as well as a permanent AV graft in my left arm
in order to have access for the plasmapheresis. I have
been hospitalized numerous times for central line infections
and I have since developed subclavian stenosis. I am
currently undergoing treatment for an autogolous stem cell
transplant at Northwestern Hospital in Chicago, Illinois.
This is going to be a long and difficult process but in the
end the hope is to put me in full remission or cure me.
I am the first person in the United States to undergo this
treatment for CIDP and only the second in the world.
The parameters that I had to meet to be a candidate for the
transplant were very strict. I would like to tell my
story and get the public to know about CIDP as well as the
treatment that I am undergoing. I do not want anyone
else to go through what me and my family have gone through
with insurance, finances, and the horrible quality of life
that I (we) have had during the last 2 1/2 years.
Please contact me soon and hopefully I
can get back to you. I will be getting very sick from
chemo etc. etc. in the next few weeks.
Sincerely,
Jennifer
Please read below for more information by Jennifer.
Another Note By Jennifer , on the
research information about stem cells ....
The article on the other patient that went through stem cell
transplant for CIDP was done in the Netherlands
approximately 2 years ago. As far as we have heard
that patient is in full remission yet today. Though I
am the first one in the U.S to undergo this transplant for
CIDP Northwestern has done 130 stem cell transplants for
other diseases such as lupus and M.S. The statistics
from those 130 transplants are: 65% are in full
remission after 7 years or less, 25% are not in remission
but are doing much better then they were prior to transplant
and 10% are back at the same point or worse after
transplant.
I will keep in touch if you request that.
Sincerely,
Jennifer
Recent update March 7th 2005
Hello
gentlemen.
You asked for continued updates on Jennifer's
progress so I have a few for you. Also, I update
the website on Jennifer quite frequently if you
are interested. The website is:
www.caringbridge.org/il/jeno
Jennifer was taken off of her 1000mg BID
cellcept last week. She has been declining
physically since then but not too rapidly. This
was expected. Jennifer has been giving herself
600mcg neupogen injections for the last week.
This was given to stimulate her stem cell growth
and also for the stem cells to become very
active coming out of her bone marrow.
Jennifer had home health coming frequently last
week to monitor her labwork. On the 4th and 5th
of March Jen was neutropenic. Her WBC count
dropped to 0.7. Jen also had severe bone pain.
She was miserable and hurt so badly; however,
this was a good sign. It signified that the stem
cells were active and coming out of her bone
marrow.
Yesterday (March 7th) we had the first stem cell
harvest. Jen was on the machine for 5 hours.
They pheresed 5X her blood volume (15 liters).
At last count they were able to collect
18,000,000 of Jen's stem cells. Jen will need to
have 2,000,000 to do the transplant. Though
18,000,000 sounds like enough; after they get
done processing the stem cells we may be under
2,000,000 and then we will have to do additional
harvests. This is not expected to happen,
however. Jen was extremely weak and fatigued
after the harvest yesterday.
We have attracted alot of media attention. We
have been in 5 papers and Chicago CBS2 News is
videotaping a story on Jen to be aired after the
transplant. We have also heard rumors that
Discovery Health and National Geographic will be
calling.
Thank you for your interest in Jen and her
status and for placing Jen's story on the
CIDPUSA website. We have not forgotten to send
you the entire story, we are a little
overwhelmed right now as you can imagine.
We return to Northwestern on the 24th of March
for the long in-patient stay (4-?? weeks).
I will write again when it is pertinent.
Rick O.
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