Home
My Story
Stem Cell Transplant
One Year Update
View Point
Advocacy
Clinical Trials
NJSCREF.org
List of Treatable Diseases
Current News
Guest Columnist
Funding
Readings
Transplant Survivors
Wrinkles
Health Monitoring Equipment
|
|
Before you begin reading this, please go to the Clinical
Trials section for up to date information.
I have been 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 Cytoxan, which ultimately did not help. I was
put on Bosentan (Tracleer), which gave me enough strength to
continue teaching for three 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 adultstem 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.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 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 is one thing I try 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 '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, Incontenence, the list
just keeps growing!
The 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
suppplemental oxygen during the day. By the end
of the second month, I was no longer using it at night.
The skin involvement is returning to normal. My fatigue went
away. The rash on my face disappeared. I could walk at my
normal pace. I still get winded but it isimprovings 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 takes anywhere from 6 months to a year. It has
been two years since my transplant. 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
in 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.
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 PH. 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 local
pulmonologist, or to to clinicaltrials.gov and 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.
|
|
