My Story . . .
   "Stem cell transplants work.   I am living, breathing proof."


My Story

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I was a high school teacher of choral music for 35 years.
In 1998 I began to notice some changes in my body.
Digestive problems, aches, pains, and not being able to speak
for 8 hours without damage to my throat.  I had to use a 
microphone for last ten years of my teaching career.  Each time I 
would go to the doctor they could not find a reason 
for my symptoms. I began to feel like the crazy 
woman of my town. 

My hands began to swell.  They had been numb upon waking
for years, and I just never did anything about it. Then my
hands became suddenly cold.  Then they would get warm. 
Someone mentioned Raynaud's Syndrome to me.  When I 
could not feel the piano keys any longer, I knew it was time to 
go back to the doctor.

My Primary Doctor sent me to a rheumatologist.  He informed 
me, without benefit of a blood test, that I had Rheumatoid 
Arthritis.  After three months, he told me to go to a 
pulmonologist, because he could hear something in my lungs.
The pulmonologist ordered a CAT scan.  With that
information he told me I needed a lung biopsy.  The lung
biopsy showed I had Pulmonary Fibrosis.  I was also diagnosed 
with Pulmonary Hypertension. I was 54 years old.  

A round of second opinions brought me to a Rheumatologist
who diagnosed my situation as Scleroderma.  I began 
treatment with chemotherapy, which ultimately did not help.  I was 
put on Bosentan (Tracleer), a treatment for Pulmonary Hypertension, 
which was being used for Scleroderma off label It allowed me to 
continue teaching for two years. 

  I was taking about 12 pills  twice a  day, for GERD, pain,
cough, hypertension, the list was endless.  

Most of the team felt that a lung transplant was in order. 
I did not. In late 2003 one of my Team told me about  the 
future Adult Stem Cell Transplant.  If I could stay healthy 
until it was ready, I might be a candidate.  It became 
available in 2004. Most of my Team were not in favor of the  
stem cell transplant. I went for an evaluation anyway, and 
was found to be a good candidate for the procedure.  There 
were 10 people before me who had participated in this 
particular trial.  All are alive and improving. I was 
scheduled for the transplant in July 2005.

Understand please, we are NOT talking about embryonic stem 
cells.  They are not viable to date.  It may be for another 
generation to uncover the mystery where they are concerned.  
But we do have ADULT stem cells, right in our own body!!  
Why not use what is available on the planet?  In our own 
back yards? 
People of all walks of life need to be reeducated about 
stem cells, including, I'm sorry to say, a lot of physicians.  
This  in my small way, is what I am trying to do.

Briefly, the history of how this all came about was through the
stem cell transplants being done on cancer patients like 
those who had Leukemia.  Patients with Rheumatoid Arthritis also  
discovered that their arthritis disappeared.  Doctors decided to 
try stem cell transplants on Lupus patients.  That research 
has been going on for 9 years, with excellent success.  The 
natural progression was to move on to Scleroderma, since those 
diseases are somewhat related.  

From there, the field broke wide open,and new clinical trials 
are appearing every day for all types of disease heretofore 
deemed  chronic or 'incurable.' Some of the over 70 diseases 
include:  Multiple Sclerosis, Lupus, Diabetes I, as well as 
stem cell transplants for heart patients, knee replacement, 
Sickle Cell Anemia, Incontinence, the list just keeps growing!

My transplant took about 2 months, including the outpatient  
time.  I had been using oxygen 24/7 during the entire time at 
the doctorís request. I had been using it on demand before 
that, which was getting to be more often each day.

By 4 weeks after the transplant, I had weaned myself off the 
supplemental oxygen during the day.  By the end 
of the second month, I was no longer  using it at night, either.  
The skin involvement  returned to normal.  My fatigue went 
away.  The rash on my face disappeared.  I could walk at my 
normal pace.  I still got winded but it improved all 
the time.  I walk a mile and one half each day. The first 
few minutes are breathless, but then I get a 'second wind,' 
if you will. Iíd rather be out of breath for a couple of 
minutes and enjoy my new life.

Recovery time  from a stem cell transplant takes anywhere 
from 6 months to a year.  It has been three years since 
my transplant. I have returned to a nearly normal life. 

I was part of the ASSIST clinical trial.  The protocol 
that was used for me has a mortality rate of 0%. 

There are 100 diseases which have a stem cell transplant. 
Some are approved by FDA, some are still not yet ready for 
trials. Each disease situation is different, but that is 
part of your research. If you think you might be a candidate, 
you can call or email the doctors and they will be more than 
willing to talk with you.  They are eager to get information 
to prospective patients.

  A stem cell transplant might  not be for you.  But if you 
donít do the research and make the call, you will never know. 
You must be aggressive for your health, your life.  Do not 
take 'no' for an answer.  Keep searching. 

I wish I had better news regarding Pulmonary Fibrosis per se, 
most especially since that was what my first diagnosis was.
I am not ignoring Pulmonary Hypertension, either.  There 
is not a transplant so far.  However, there are other 
clinical trials going on right now which might or might 
not be useful.  Call your doctor, or to to 
on the weband type in Pulmonary Fibrosis, and Pulmonary 
Hypertension.  As information becomes available I will 
include it here.

In April of 2007 I again climbed the podium and conducted 
Mendelssohn's  Oratorio, "Elijah" with chorus and orchestra.  
It was something I thought I would never be able to do again.

Today, April, 2008, I live a nearly normal life. Improvements 
are more subtle, but some things continue to improve.  I kayak, 
study Pilates three days a week, sing in the church choir and 
other places, and volunteer for different civic groups. I am 
nearly finished preparing the final draft of this journey, 
and I speak anywhere to groups who wish to hear and be 
reeducated about how adult--not embryonic, stem cells work today.  
You can contact me about that in the advocacy section of the site. 
I am quite busy!

Stem cell transplants work.  I am living, breathing proof 
that they do.

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