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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 doctor’s 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. I’d 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
don’t 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 clinicaltrials.gov
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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