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Special Google Health Search
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.